USEFUL TEST LIST FOR CFS (Post 9)

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)

(before this post: 5.536 visits)
Note: You can see the original version of this post with all kind of links to sources cliquing in the title of this post.

CFS-CFIDS-ME, etc, are multi systemic illnesses which have, in most cases, a strong viral and/or toxic component. Several systems are deregulated, or perhaps permanently damaged, including the immune system, the endocrine system and the neurological system.

When we revise all the research trends published they converge in the following theory for CFS:

An external stressor such as toxics, heavy metals, viral infection, trauma, surgery... forces the adrenals, and under this oxidative stress status, glutathione is consumed and exhausted. When this stressor continues and becomes chronic, leads to a blockage of the methylation cycle, which also blocks the Krebs cycle, the immune system, urea cycle, etc... Under this situation, a mitochondrial failure is developed that brings fatigue as a result among many other alterations, like cardiac implications demonstrated by Cheney and Lener... Once the illness has become chronic, with the detox system blocked, a debilitated immune system due to the mitochondrial failure and the lack of genetic material to function properly, opportunistic infections arise and toxics accumulate in the body, aggravating more the condition of patients.

A)Diagnostic Valuable Test Although not generally accepted as a diagnostic test, they have been claimed by researchers to be useful markers for the disease and tend to be present in most of the patients. Nevertheless the value of these is more for diagnosis than for treatment of the condition.In order of importance: RNASe-L, PKR and Elastase levels, Nitric Oxide in serum and oxidation levels, SPECT and xenon SPECT scans of the brain, MRI scans of the brain, PET scans of the brain, Neuropsychological testing, EEG brain maps and QEEG brain maps, Erythrocyte sedimentation rate (ESR), Insulin levels and glucose tolerance tests, 24-Hour Holter monitor, Tilt table examination, Exercise testing and chemical stress tests, Neurological examination and the Romberg or tandem Romberg test.

B)Aditional abnormalities test found in CFS patients should be checked at least once, and based on the criteria of the physician that is treating you, it might be necessary to repeat them periodically to evaluate the evolution of the protocol followed in your case.

-Tests of the immune system: The Th1-Th2 relationship of the immune system, Low NK activity (as opposed to levels), T-Activated Linfocites Count, % Linfocites, Cellular Inversion at CHMI and/or CHMII level, Elevations of circulating cytokines, Immunoglobulin deficiencies
-Serology Test: IgG for viruses such as Epstein-Barr, CMV, HHV6. Additionally we need to get tested for all possible infections that could have caused a reaction in our hormonal stress, and therefore in the serology we should include: mononucleosis, Hepatitis B & C, LES markers, Toxoplasma, antibodies of candida albicans, Babesia, Erchilia, Bartonella, Borrelia etc...
-Levels of amino acids in blood and urine 24h or spot.
-Liver function
-Candida levels, in order to detect subclinical fungi infections like candida albicans, there are special urine test that measure the metabolites that will help us to rule it out it also can be observed the metabolites through an Organic Acids Test.

According to the results, patients should seek be treated for each one of the abnormalities which show up. There are allopathic treatments (can be problematic for some, as CFS-MEers tend to have also Chemical Sensitivities) or homeopathic treatments (in Germany, they are very commonly used).
Diet is also important regarding dealing with chemical sensitivities, amino acid levels, candida levels.

C) Advance testing on CFS: Besides theses regular, although not standard test mentioned above, there are additional test that can be run, and will deliver relevant input for CFS patients. There is a protocol to regulate these different abnormalities, which might be causing part of the symptoms in CFS, as a few of the latest research published postulates. We will discuss below some of them in here:


-Mitochondrial Profile This is in the latest research the main responsible for CFS. There is a test run in UK by Dr. Myhill. This test measures the enzyme SODase (Superoxide Dismutasa) This enzyme is necessary in the detox process of free radicals of the mitochondria, as well as the CoQ10 levels, Niacinamide and Intracellular Magnesium. And most of all the efficiency of the mitochondria in converting ADP into ATP. It also measures the free ADN which is a nice marker to observe the cellular damage and apoptosis or PKR which is the programmed cellular death due to oxidative stress.

-Adrenal Hormones in Saliva: This test is useful to treat the adrenal failure, because there is a treatment for it. The test is run during a whole day (8:00, 12:00, 16:00, 20:00) Cortisol and DHEA levels are tested. Also is necessary to test for a potential subclinical Thyroids problem (TSH, T3 and T4). Preferably in urine 24h, because subclinical thyroids is not always detectable in serum. Additionally a hair mineral test can be done to observe the unbalance existing in terms of minerals caused by suprarenal malfunction and correct it accordingly. Last but not least,

-HPU Test: This test measures a metabolic disorder, often occuring as a biochemical-enzymatic familiarly during the chemical reaction of formation of the red blood pigment. (Hemosynthesis).
It can be said that Kryptopyrrolurea is not a symptom, but rather the primal cause for different symptoms and disease states, among others hipoglucemia.
In the German-speaking countries, is abbreviated as KPU. In the Netherlands HPU. In England the abbreviation is HPL.

-Hypercoagulation Testing
: As a part of Hemex's research, they have developed a test to determine if a patient has this hypercoagulation disorder. The Immune System Activation of Coagulation (ISAC) tests five substances; abnormal results on any two of the five is considered to be a positive indicator of hypercoagulation. Their results thus far have found 79-92 percent of the CFS and/or FM patients they tested have hypercoagulation. As with many of the more detailed blood tests developed in the past decade, the defects causing hypercoagulation are rarely or not at all detectable by the standard laboratory tests performed at general labs, such as Unilab, Quest Diagnostics, etc. The standard coagulation workup done by these labs assess only the risk of actual clotting, whereas the ISAC panel is 10-20 times more sensitive.

-Metilation Panel (methionine cycle): This blood test is meant to observe the potential blockage of the methylation cycle, and therefore the potential detox treatment and follow up through urine. If after this analysis, you observe a blocked Methylation Cycle, then is wise to do a metal in urine test to have a starting point for the detox treatment. This test will be useful to follow up the metal excretion in the detox protocol or / and adapt the mineral doses intake.

The role of the methylation cycle in the sulfur metabolism is to supply sulfur-containing metabolites to form a variety of important substances, including cysteine, glutathione, taurine and sulfate, via its connection with the transsulfuration pathway.

In autism the methylation cycle was found to be blocked at methionine synthase, which is the step involving methylation of homocysteine to form methionine, resulting in lower plasma levels of cysteine and glutathione and a lowered ratio of reduced to oxidized glutathione. This lowered ratio reflects a state of oxidative stress.

It is known from studies of twins that genetics plays an important predisposing role in autism.The fact that the rate of incidence of autism has increased dramatically in recent years is evidence that there is also an important environmental component in the development of cases of autism, since the population’s genetic inheritance is relatively constant over much longer periods.

Evidence suggests that this same dysfunction is also present in chronic fatigue syndrome: Low methionine levels in serum and urine, below-normal levels of carnitine, coenzyme Q10 and melatonin. All these substances require methylation for their biosynthesis.

RNase-L remains activated in CFS because of the suppression of the cell-mediated immune response and the consequent failure to defeat the viral infection

There is abundant and compelling evidence that the glutathione depletion methylation cycle block mechanism is an important part of the pathogenesis for at least a substantial subset of chronic fatigue syndrome patients.

-Glutathione and Selenium Test: The best complement to Methylation Panel, would be to check Reduced Glutathione RBC GSH, Oxidated Glutathione (RBC GSSG) and Total Glutathione (RBC). The important one is RBC GSH, and also the ratio of this one versus RBC GSSG. This is relevant given that the low levels of glutathione due to the blocked methylation cycle, is the main responsible for the symptoms of CFS. In the initial states of oxidative stress in this illness Total Glutathione could be miss leading and be normal or even high, that is why we test for the other two as well. Besides, even if Glutathione comes normal, if Selenium level is low, the enzymes could not work properly.

Depletion of reduced glutathione likewise causes a shift to Th2. Depletion of reduced glutathione is the trigger for the reactivation of latent viral and intracellular bacteria in CFS. In general, intracellular glutathione depletion is associated with the activation of several types of viruses. It is likely that glutathione depletion is responsible for reactivation of Epstein-Barr virus, cytomegalovirus and HHV-6 in CFS. Populations more deficient in selenium would be expected to be more vulnerable to Coxsackie B3 infection.

-LITOCROMO P450 (Genetic Profile of the Urine Cycle) This is a genetic study that can be done later, and it reflects the pharma genetic of the liver taking into account 15 genes and 92 polyforms. This study will give us information of what foods or medications are not assimilated by our liver and therefore should be skipped. The problem again is that insurance only covers you this study when you have cancer or aids… This test is particularly useful in the case that Glutathione and Selenium comes out normal, but what is not working are the enzymes that regulate it due to their genetic polyforms.

-DETOXIFICATION TEST: Our bodies must be able to detoxify, or neutralize, toxins from the external environment as well as those produced within our own bodies. This process takes place mostly in the liver, and consists of two phases. In Phase I toxins are activated, which means that they are altered in such a way that carrier molecules (Phase II) are able to transport them out of the body. A handy analogy is the bagging of our trash (Phase I), so that the garbage man can pick it up and cart it away (Phase II). Phase I is accomplished by a family of enzymes called "cytochrome P450", and Phase II takes place via a number of important mechanisms, four of which we measure in this test, with the help of the challenge substances, caffeine, acetaminophen and aspirin. Both Phase I and Phase II of detoxification must function adequately so that toxins are able to be neutralized, and the two phases must be in balance with each other so that the activated compounds from Phase I cannot accumulate in the body and cause damage. Laboratory: Genova Diagnostics

-Porphyrine Test is different of methylation panel, in the sense that is useful to corroborate that toxicity comes from mercury or lead. Metals would not normally show up in the urine unless you are following a detox protocol, the reason for this is that they are accumulated in the organs. Elevations of the individual porphyrin species can have a number of causes, including heredity and environmental contact. Chronic exposure to toxic metals, including lead, mercury, arsenic, aluminum, and cadmium often results in organ-specific accumulation that compromises target organ physiological function. Heavy metals impair many aspects of metabolism, while chronic exposure to organic chemicals, such as pesticides, can have deleterious effects on the body’s biochemistry and adversely affect cellular function.

-Complete Stool Analysis including parasites: Stools are teeming with bacteria, some beneficial, some neutral, and some that can be harmful. It is important to know what you have, especially if you have health problems. Health-enhancing intestinal bacteria serve to prevent the overgrowth of potentially harmful bacteria in the gut. Stool testing can also assess your body’s ability to digest food, the pH, and the amount of mucus present. A Triple Faeces Test is recommended for parasite testing, given that specificity drops when a single sample is taken. Three days in a row is recommended and scraped in the external annus is also necessary, given that is where parasites eggs are normally displayed.

-Metabolic Analysis Profile or Organic Acids Test: This profile measures 39 organic acids that play a role in four critical areas: gastrointestinal function and dysbiosis, cellular and mitochondrial energy metabolism, neurotransmitter metabolism, and nutritional assessment of vitamins and minerals that serve as critical enzyme cofactors. Test results allow practitioners to design comprehensive, customized therapies to restore optimal metabolic health. This test can be done at Genova Diagnostics USA

Urinary organic acid analysis for metabolic profiling has traditionally been used for detection of neonatal inborn errors of metabolism. Since the reporting of isovaleric acidemia in 1966, there has been a rapidly growing list of disorders resulting in elevated excretion of metabolic intermediates. The application of the testing to assess special nutrient requirements of individuals is discussed in a variety of sources. Organic acid profiling has also been useful in identification of the source of toxicants from the environment and the gut.

When you do the Organic Acids Test plus Figlue (Formiminoglutamic acid), then is not necessary a MAP.
MAP is a variation of organic acids test, but besides looks at FIGLU, which is necessary to know the state of methylation cycle. FIGLU will be high if there is a deficiency of Tetrahidrofolate (THF), a type of B9, and this occurs when there is a blocked methylation cycle. If you run a Methylation Panel, they already look at THF level, and therefore FIGLU is not necessary. In conclusion, when you run a methylation panel plus an organic Acids Test, a MAP won’t be necessary, neither the FIGLU.

For further interpretation of additional test results, visit: http://www.metametrix.com/content/Home

D) Ruling out test: Numerous CFS specialists have reported that a subgroup of those diagnosed with CFS, especially those whose CFS was gradual-onset as opposed to sudden-onset, have been misdiagnosed and actually have another chronic medical condition. The following medical conditions should be ruled out before a diagnosis of CFS can be made:

•Multiple Sclerosis (MS). ~5% of cases are missed MS according to Dr. Byron Hyde.
•Systemic Lupus Erythematosus (SLE). ~5% of cases are missed SLE according to Dr. Chris Reading.
•Myocardial infarcts. At least 5-10% of cases according to Dr. Byron Hyde. (1)
•Cerebral-Arterial Obstructions.
•Primary adrenal insufficiency (Addison's Disease). (2)
•Primary hypothyroidism (3)
•Liver disease.
•Renal (kidney) disease.
•Haemochromatosis.
•Parathyroidism.
•Rheumatoid arthritis.
•Reiter's disease.
•Sjogren's syndrome.
•Diabetes mellitus.
•Inflammatory bowel disease.
•Hepatitis B/C & HIV.
•Scleroderma.
•Malignancy.
•Cancer Screening test Ca 125 (Ovarian Cancer)
•Espirometry and full functional study including effort test (Neumologyst)
•Ross River Vius (Australian mosquito, in case you have travelled in the area)
•Colonoscopy for Celiac Disease
•Lyme Test: This is something that need to be ruled out, and the Elisa test that checks for IgG and IgM for Borrelia has a very low specificity, and therefore is not enough. Also need to test for potential coinfections: Babesia, Erchilia, Bartonella... Preferably a Western Blot test and CD57 count should be run to rule out this disease. Igenex and Labcorp in the US are the best labs to get tested. In Europe you can try Melisa labs in Germany. Lyme disease is as controversial as CFS. Some say that is simply part of SCF, because normally Lyme should be cure with a short time set of antibiotics, and some other say is a different illness with an specific long term antibiotic protocol. Either case, it will help you to know if you have an active tick bite toxicity in your body. Note that infectious pathogens are included among the possible biological stressors that can contribute to the onset of CFS. In particular, Borrelia burgdorferi, the bacterium responsible for Lyme disease, has been found to deplete glutathione in its host. This may explain the very similar pathophysiologies of chronic Lyme disease and CFS. This may also explain the epidemic clusters of CFS, which seem to have been produced by a virulent infectious pathogen (or pathogens). Perhaps the genetic factors are less important in producing the onset if a very virulent pathogen is present.
•Notes:
(1)Electrocardiogram & Ecocardiogram - Doppler (Cardiologyst)
(2)Not to be confused with sub-clinical adrenal insufficiency secondary to pituitary dysfunction, which is a common feature of CFS.
(3)Not to be confused with sub-clinical thyroid dysfunction, which is a common feature of CFS.


Note: Obviously the vast majority o these tests are not covered by the insurance companies, given the unfair status that this medical condition has at the moment. All this testing can contribute to a significant improvement on the quality of life of patients. It could also help researchers to find better protocols and treatment if the size of the CFS patients sample was bigger, while being covered by insurers. This eventually could lead to a cure.

Also you can check this laboratory in europe for many of the test described in C) Advance Testing:

EUROPEAN LABORATORY OF NUTRIENTS
REGULIERENRING 9, 3981 LA BUNNIK
POSTBUS 10, 3980 CA BUNNIK

Dr E. F. Vogelaar (This laboratory is the only one in Europe that they do the methylation panel)
Prof Clinitian Nutrition
Benadir University, Mogadishu
Tel: +31 30 287 14 92
Fax: +31 30 280 26 88
Work Mail: e.vogelaar@healthdiagnostics.nl
Website: http://www.europeanlaboratory.com/

Besides there is also another good choice in The Netherlands which is a subsidiary of Genova Diagnostics (www.genovadiagnostics.com):

IFG
Biltstraat 152
3572 BN Utrecht
Nederland
info@ivfg.nl
www.ivfg.nl
www.ivfg.nl/Spain.htm
Tel.: +31 (0) 24 3572545
Fax: +31 (0) 24 6452899

In the US, this is the laboratory that runs the methylation panel:

Vitamin Diagnostics
Industrial Drive & Route 35
Cliffwood Beach, N.J. 07735 USA
(732) 583-7773
Email: vitamindia@aol.com
Phone: 1 (732) 583-7773
Fax: 1 (732) 583-7774)

THIS WORKS! Immunology and the treatment of CFS (Post 8)

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)


As you can see in the chart, I have been registering the "status" of my days scoring days from 1 to 10 based on my symptoms and intensity. Since I am following the protocol of my immunologist Josepa Rigau, I am experiencing a clear average score improvement.

For those of you that follow my blog and want to leave a comment, be aware that most of the time i can't respond to you. So if you want me to respond, is better to send me an email or to leave an email in your comment. My email is carlitos.gonzalez@gmail.com, and yes Catalunya is in Spain :-)

In this post I will talk about my new approach to CFS through an immunologist that I just visited in Tarragona (Catalunya). It changes the whole approach for treatments, and on top of making a lot of sense, it is working big time, or at least to me.

The latest studies of CFS points to a chronic infection in the stomach of enterovirus. The theory for this illness is that they always appear after a viral insult to the body that leaves the intestine affected and exposed to the leak of all kind of toxins and heavy metals. Besides the flora gets unbalanced and that is why we develop so many intolerances such as gluten, etc.

After trying a lot of treatments with antiviral, antibiotics, supplements… and after having several doctors: Dr. Quintana, Dr. De Meirleir, Dr. Kurk… I can’t say that they have solved the problem. I think that they have done their best, and they have achieved some progress, but the underlying condition remains there: recurrent infections, intestinal parasites, fungi, faringitis, extreme fatigue depending on the day or the moment… Also I did not like the fact that these doctors sometimes prescribed antibiotics, without really confirming the presence of a pathogen, only assuming it... I prefer to use antibiotics, ONLY when is necessary and the pathogen has been identified...

The new protocol that I am trying does not contain a single medication, and is working the best so far up until now. Dra. Josepa Rigau is an immunologist specialized in treating cancer patients, but she started to treat some people with CFS by azar, when a cousin of her came to her with the problem. She realized that it was an immune problem from the very beginning. She treated her with autovaccum for cytomegalovirus and other supplements, and she is doing quite well now. The same I can say for myself. She gave a presentation in Barcelona recently: (in spanish, but soon to be translated)
http://www.ligasfc.org/index.php?name=News&file=article&sid=167


In her opinion, with viruses, and pathogens in general, the best strategy is not the use of antiviral, antibiotics, etc… because that helps to kill them, but also kills the whole immune system. The way to go in her opinion is to create a hostile environment in our body for this viruses and parasites, so that they do not feel comfortable anymore in there and they tend to leave. Just as an example, if we fill our colon with the gas oz Ozone which will nourish the lining of the colon with oxygen, that will make that parasites that live in the intestine wall do not feel well there anymore, as they can’t live in the oxygen, and they will go with the food trying to look for another place to live.

Here is my meeting with Dr. Rigau and the results of Analysis performed and treatment proposed:

SUMMARY OF MY VISIT TO IMMUNOLOGIST DR. JOSEPA RIGAU


IMMUNITY ANALYSIS

In Madrid I run some blood test called IMI in Labs CERBA in order to check for amino acids and serology and the functioning of my white cells. Depending on that we would decide to go for the autovaccum or the homeopathic antiviral.

The autovaccum consists on extracting some blood, treat it with alcohol and eater, covert it into powder, and inject it under the skin, where the lymphocytes T act, and not the Lymphocytes B that acts in the blood stream.

Al alternative to the autovaccum is the homeopathic antiviral from Labo Life, there are versions for EBV, CMV, HHV6, etc… This acts as an immune activator and as a blocker of cellular division that avoids the mutation of active viruses.

The Transfer Factor that I used to take, acts as an immune modulator, but stays in the intestine, and therefore is not comparable to the autovaccum or the homeopathic antiviral of Labo Life. Finally after receiving my results, the doctor opted for Labo Life in my case, given that my immune system responds properly to viruses.


BLOOD TEST

SEROLOGY

HHV-6 IgG 1/80 >1/40 POSITIVE
HHV-6 IgM NEGATIVE <1/10 NEGATIVE
Borrelia Burgdorferi IgG 0,58 <1 NEGATIVE
AC Borrelia Burgdorferi IgM 0,07 <1 NEGATIVE
AC Herpes Simplex1 IgG 0,48 <0,9 NEGATIVE
AC Herpes Simplex1 IgM 0,24 <0,9 NEGATIVE
AC Herpes Simplex2 IgG 0,15 <0,9 NEGATIVE
AC Herpes Simplex2 IgM 0,36 <0,9 NEGATIVE
AC Varicela Zorster IgG 1,77 >0,9 POSITIVE
AC Varicela Zoster IgM 0,32 <0,9 NEGATIVE
AC EBV IgM V.C.A. 1/10 >1/10 POSITIVE (greater or equal to)
AC EBV IgG V.C.A. 1/640 >1/10 POSITIVE
AC EBV IgG ANTI E.B.N.A. 1/320 >1/10 POSITIVE
AC EBV IgG ANTI E.A. 1/5 <1/10 NEGATIVE
AC CMV IgM 0,19 <0,4 NEGATIVE
AC CMV IgG 233,2 >15 POSITIVE

CONCLUSIONS:

The results of the analysis, showed a high level of cholesterol and LDL. As well there was presence of antibodies of IgG HHV6. The proteic profile did not show inflammatory signs.

The results of the virology test reveal the presence of Herpes Zoster under normal limits. Nevertheless there is a clear chronic mononucleosis infection by Epstein Barr Virus. There is evidence of the existence of antibodies of anti-EBNA (Epstein Barr Nuclear Antigens), together with presence of antibodies IgG anti-VCA (Anti viral capside ). This is the typical case of a constant state of infection where there has not been reached any immunity. There is also clear activity of Cytomegalovirus, where we should see an IgG below 100 in order to consider that immunity has been reached.
EBV and CMV act many times together, therefore we will try to reduce both through homeopathic antiviral of Labo Life.

The lymphocyte count reveals a situation of normal activity from the immune system point of view. There is a good response of the CHM I, nevertheless important to mention that there is a cellular inversion in the CHM II and a dip below normal limits in the tactive cells (precursors for T8cit).

In theory, this let us observe a deficiency of the immune system against intestinal parasites, fungi and pathogens, probably due to the extra effort that the immune system is doing in the viral part.


BIOLOGIC STUDY OF CARLOS GONZALEZ

AMINOACIDS AND PROTEINS

ESENTIAL AMINOACIDS

Arginina 61 40-102
Fenilalanina 51 37-61
Histidina 56 45-61
Isoleucina 62 37-87
Leucina 126 82-153
Lisina 124 123-237
Metionina * 35,5 19-31
Treonina * 52,7 87-124
Triptofano * 38,2 44-55
Valina 230,8 177-298

NON ESENTIALS

Alanita 285 240-405
Asparragina 63 45-65
Aspartico 3,6 2-4,65
Cisterna 16,2 8,5-24
Glicina 177 166-300
Glutámico 41,1 30-57
Glutamina * 435 490-600
Prolina 152 130-220
Serina 93 72-119
Tirosina 62 42-70

THE REST

Metilhistidina 0 <10
Alfa amino adipico 0 <5
Alfa amino butirico 15,4 11-25
Anserina 0
Beta Alanita 0 4,5-8
Carnitina 0
Cistationina-1 0
Cistationina-2 0
Beta amino isobutirico 0
Citrulina 25 25-40
Fosfoetanolamina 0,7 3,3-8,3
Fosfoserina 2,9 5,3-10,5
Gamma Aminobutirico 4,2 0,8-8,1
Hidroxilisina-1y2 0
Hidroxiprolina 9,1 4,3-23
Ornitina 88,5 60-129
Taurina* 68,8 80-152


COMMENTS:

A) Amino acids that contain sulfur

Taurina Low Level: Indicates digestive problems with fat, deficit of lipolitic proteins. They are associated with high cholesterol levels, cardiovascular alterations and beta adrenergic dysfunctions.

Metionina high level, is associated with hepatic detox function, ileocecal and gastric resection or unbalanced intestinal flora.

B) Amino acids for polypeptides and sources of energy. They are used to sensitize peptides and proteins. Represent 50% of ingestion.


Treonina Low Levels are associated with hypoglycemia manifested with fatigue, headaches and anxiety.


Neurotransmitters and precursors

Triptofano Precursor of serotonin (stabilizer of mood ) and melatonin (controller of sleep/insomnia). Low level implies tendency to depression.

Amino acids related with the cycle of UREA. This is a critical metabolic process.

Glutamine: Is the source of energy of enterocites and neurons. Is a natural balance. Reflects problems of desintoxication from the ammonia and / or a diet poor in essential amino acids.

Amino acids related with Glicina and Serina

Fosfoetanolamina Competes in the brain with GABA and controls its inhibitory action.
Fosfoserina, in neurodegeneration.

Beta Aminoácids. Does not make part of the proteins. Is a precursor of biliar acids, antioxidants of neurotransmitters and metabolic control.


Beta Alanita low, status of exhaustation..

ANTI FREE RADICALS

In general is recommended to eat antioxidants in a natural way: 5 pieces of fruits or vegetables a day, mixing 4 different colors: white, green, red and yellow. What counts is the color of what you eat. In that way you will have daily all the minerals that you need.


PROPOSED TREATMENT IN MI CASE

With the meals:

- Eye-Q (Vitae): 2 pills in each meal. Is an Omega 3 that alleviates the dry eyes and lowers the cholesterol..
- L’equilibrium Vital (Minerals -2 in each meal ), take it only when the PH in the urine is unbalanced. Its rol is to balance the acids and the alkaline among the things we eat. We need to measure the PH in the urine 3 times a day, once every 10 days.
- Microfloriana: probiotic to restore the flora in the intestine. Preferably take at the same time we do the cleansing with Puricorp.
Semana1: 5cc with breakfast
Week 2: 5cc with breakfast and 5cc with dinner
Week 3: 10cc with breakfast y 10cc with dinner
Week 4: 10cc with breakfast, 10cc with lunch y 10cc with dinner
From the 5th week onwards, take 10cc in the morning until you finish the product., and then switch to another probiotic: Darmocare, Acydophilus, Lactobacilus, VSL-3...
- Milk thistle, artichoke and chlorophyll in pills or solution diluted in juice. This will help the liver to detox, take with the main meals, especially when there is fat or proteins. Cat’s Claw in an activator of the immune system, but I do not need it at this time
- Chlorella & espirulina, one cleans you from minerals, and the other one does them, and although seems like a contradiction to take both at the same time, both of them have chlorophyll, and therefore oxygenates the intestinal tract and prevent bacteria to remain there.

Out of the Meals:


(Morning and night cocktail)

- Envozyme (Papaya Enzyme Complex) doses of 6 pills, to be taken out of meals, and only when there is muscle pain and illness sensation.
- Puricorp (Suravitasan-Antiparasites treatment of 21 days- 5 in the morning and 5 in the night – not with the meals
- Citrobiotic/Citriplus: Extract of grape frut seeds to fight fungical infections. Take daily during 3 months, and then one week out of 4. Always dilute 15 drops in water in the morning and the night without mixing it with probiotics. Also can be used as an antiseptic in the skin, but not directly, but mixed with water.
- Glutamine: Twice a day, in the morning and the night. It is a source of energy for the intestinal mucosa and the brain.
- Ergytaurina (Nutergia) twice a day with the meals.

(Only in the mornings : Can still take what I used to)

- NAC + Vitamin C in ascorbat form
- Multivitamin supplement

(Sublinguals- only in the morning)

- 2LEBV (Labolife) once a day with no food in the stomach. (Continue until June to check again the blood)
- 2LCMV (Labolife) once a day with no food in the stomach, not in the night because it could alter the quality of sleep. (Continue until June, but only the first 10 days of each month, and the in June check again the blood)
- Magnesium+Vitamin B6 (PHO) Discoflash one tablet
- Mucosa Compositum (Heel) Is an activator of the intestinal mucosa. Box1 (one a day with empty stomach), Box 2 (3 per week with empty stomach), Box 3 and 4 (2 per week with empty stomach)
- Coenzyme Compositum (Heel) Is the same principal, but for the liver. Take once you are done with the previous one. Box1 (one a day with empty stomach), Box 2 (3 per week with empty stomach), Box 3 and 4 (2 per week with empty stomach)

(Only in the night)

- 5 http/Solgar (one a day) This one enhances the mood and offsets the low level of triptofano which is the precursor of serotonin.

Additional Treatments Recommended:

Colon cleansing with oxygen (ozone treatment) Institute of Biological Medicine (Dr. Domingo Garcia de Leon)
Blood cleansing with ozone treatment (like a dialysis) This one is less recommendable, given that the anticoagulant can cause allergies, and therefore is an effective but invasive method.

These treatments, oxygen our blood and our colon, and both viruses and parasites feel quite uncomfortable in a place where there is oxygen. Therefore we will become more resistant to these pathogens, and our immune systems is stronger. This is the objective actually, to save work to the immune system creating an alkaline environment and oxygenated that does not allow the virus to divide and creates an unfriendly ambience for pathogens.

Genetic Profile of the urine:

This is a genetic study that can be done later, and it reflects the farmacogenetic of the liver taking into account 15 genes and 92 poliformisms. This is called LITOCROMO P450, and it also is done out of Spain. This study will give us information of what foods or medications are not assimilated by our liver and therefore should be skipped. The problem is that insurance only covers you this study when you have cancer or aids…

Advice for the comments I received: (Please better send me an email, I can't otherwise answer an anonymous comment)

Is definitely worth to pay a visit to Dr. Josepa Rigau, since I started her protocol i feel a clear improvement, not yet 100%, but my average day is 60%, when it used to be 40%, so is only 4 months since i started, and i already feel a difference. Josepa Rigau: +34977220358

It would be very revealing to check your flora, when you have a disbiosys (altered balance of good and bad bacteria) your whole immune system can be depressed and could explain why you are not able to fight viruses or other infections. To check your flora, you need to pass a TFT (Triple Faeces Test - 3 samples, 3 days in a row). If they find a pathogen like entamoeba Histolitica, Giardia Lambia, etc you will be treated with antibiotics, if so, take a lot of probiotics to restore your flora. In any case, even if you only show comensals such as blastocystis hominis, endollimax nana, entamoeba coli, etc... still it is a good idea to use probiotics regularly. Witch brands so that you put inside a variety of good bacterias: acydophilus, lactobacilus, etc... Also very highly recomended to search for a doctor that puts ozone in your colon with gas, it is a natural antibiotic and wont harm you at al, and will make your colon an unfriendly place for parasites, bacteria and viruses...all that will boost your immune system.

Only if HHV6, EBV or CMV were an issue in your case, then labolife will help you to reduce the viral load.

This antivirals are supposed to lower the viral load through some months you should get tested again to see if it helped you. I do not know if there are other medications for HHV6, but before trying heavy stuff that Dr. Montoya is using for a clinical trial, I would try better the omeopatic antiviral I told you, it contains very mall dosis of interferon, and it will help you to reduce the virus.

How to get Labolife? www.labolife.com It is for sale in Spain, Italy and Belgium... Try to contact them, maybe there is a way to be sold overseas...

Labo'Life Belgium
Parc scientifique CREALYS
Rue Camille Hubert, 11
5032 Gembloux
BELGIQUE
tel : 00 32 81 40 87 81 - info@labolifebelgium.com

Labo'Life España S.A.
Avenida des Raiguer, 7
07330 Consell - Majorque
SPAIN
tel : 00 34 971 14 20 35 - info@labolifeesp.com

Labo'Life Italia s.r.l
Via Andrea Costa, 2
20131 Milano
ITALY
tel : 00 39 02 763 16 146 - info@labolifeitalia.it



Hope this helps you, and wish you the best....

Gut problems...the next step Post 7

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)


Well, here I come to continue this blog with an update of my current medical condition.

Because I had parasitosis, rectal bleeding, food intolerances and celiac markers in my serum, the gastroenterologist decided to run a colonoscopy and endoscopy with biopsy to rule out celiac disease or other diseases. The results of the biopsy were good, I am not celiac, but they diagnosed a espastic colon, which is no news to me, because I suffer from IBS for a long time already.

The thing is that during one month I have been eating gluten, lactose, and all the things that I am supposed to be intolerant to, due to this colonoscopy that had to be done. Probably because of this I have been feeling worse with my IBS. Besides I have experienced gastritis once or twice a month since June 2007, and unfortunatelly my EBV IgM became positive in my last blood test.

The 31st of October I obtained my last stool test, after 20 days treatment of my Entamoeba Hystolitica with yodoxin and metronidazol, and these were the results:

- Cysts of Endolimax nana (POSITIVE)
- Cysts of Iodamoeba butschlii (POSITIVE)
- Cysts of Blastocystis Hominis (POSITIVE)
- ELISA de Helicobacter Pylori (POSITIVE)

The good news is that there is no trace of Entamoeba Hystolitica, and the bad news is that Blastocystis Hominis is still present, as well as other commensals that point for an umbalanced flora in my gut.

In January I repeated the stool test, after taking a natural treatment with Puri-corp (roots to clean parasites), and the results were slightly better (one less):

- Cysts of Endolimax nana (POSITIVE)
- Cysts of Blastocystis Hominis (POSITIVE)
- ELISA de Helicobacter Pylori (POSITIVE)

Besides this, I am going to see an inmmunologist in Tarragona the 5th of November (Spain) that someone reccomended me, her name is:

Josepa Rigau
Av. Catalunya 12, 3º 1ª
43002 Tarragona
tel: 977220358

As well, I spoke with Jose Jimeno from ZELTIA (Cancer biotechnology company that just launched Yondelis in the market), and he tells me that a good friend of him, that is an oncologist, has specialized in CFS and is one of the best practicioners in Europe, his name is Humberto Tirelli, and is located in Aviano, close to Venice. I will get his address from Jose Jimeno soon, and I will also pay him a visit. (utirelli@cro.it / 0434 41416)

The reason for keep on seeking specialized medical help, is simply because I am still not recoverd, I have improved, yes I have, but I still suffer crisis, and the underlying condition is still there. So I hope that my experience keeps on bringing light to those of you that play in this team.

I consider myself lucky in many respects, my personality helps, I am a positive person, my economical situation helps as well, I had access to good professionals, my progression has been slow, but positive. I am full of hope, and confident that I will recover, and I beleive on that from my heart.

FEELING FUNCTIONAL NOW..update to come soon...

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)

Chronic Fatigue Syndrome, has been a lousy name for this illness. It has been inappropriately called like this, and that leads to stigmatization and lack of awareness among the medical opinion and undiagnosed patients.

I just came back from seeing my Doctor in Brussels (Kenny de Meirleir), and he told me that this illness should have been called cancer, aids, chron, or something like that, because indeed it shares a lo of similarities, like a deficiency of Natural Cell Killers necessary to fight viruses, damaged lining if the intestine that results in lack of absorption and inflammation, and an hyperactive immune system.

Luckily for me, the antiviral that I took in January this year have been able to put down my Epstein Barr Virus, which means my immune system is stronger as well. In December 2007 the PCR on EBV came positive, as it did always since September 2005 showing an acute infection by EBV. Nevertheless my Doctor prescribed after December 14 days under Zelitrex. This is a prodrug from acyclovir called Valaciclovir, which inhibits herpes DNA replication. This drug is a competitive inhibitor and when it gets incorporated into DNA, it acts as a chain terminator. This is probably the reason why the PCR on EBV performed 45 days after taking the drug came out negative. In April the test still showed a negative IgM, and a low IgG which shows no recent infection.

The fact that I was not suffering from EBV anymore since April 2007, as well as the fact that I have been eating without gluten and lactose for several months in order to avoid allergens, have allowed me to feel much better and functional. Indeed I have started to work again full time since June 15th. I hope that everything goes fine in this respect.

I am very careful with my health nevertheless, because I am aware that the genetic problem still remains with me, and this remission phase could be hampered by so many factors.

Currently Dr. De Meirleir is prescribing Nexavir during a maximum of one year to patients, weather that works or not, is still to be seen. He claims that 3 out of 4 patients responds well to the treatment, but he also said so when prescribed be intestinal antibiotics and probiotics to reestablish my flora in my intestines. And although I feel functional, I am still not at my 100%, lets say that I feel at 70% many of my days, instead of 30% like I used to feel, this is already a great achievement.

In April 2007 I showed presence of Blastocystis Hominis in my intestines, and apparently they were resistant to the antibiotics I took Jan-March (Paromomicice-Humatin). A new stool test performed in July 2007 revealed that I also have Helicobacter Pilory and Entamoeba Histolytica. I am currently treating E. Histolytica with YODOQUINOL 650mgr and METRONIDAZOL 750mgr. Lets see if that works within a month. I recommend everybody does a TFT (Three Faeces Test) in order to check for parasites, they can explain a lot of the symptoms and they are no so easy to detect in one single stool sample.

In April 2007, they found a positive ANA test in my blood. Low titer ANAs can also be found in the serum of many healthy elderly people, but I happen to be 37 years old. All positives will be further analyzed for DNA and ENA antibodies, which in my case were negative. There was also the presence of AC Anti-Gliadina IgA, and they will take a biopsy from my intestines to check if I could be celiac, or I am simply gluten intolerant and lactose intolerant due to the presence of long-term parasites and the long term Epstein Barr Virus infection that I had for almost 2 years.

I just suggest that governments should be spending more money research for health matters like this, instead of wars and guns. There is a still long way to go in terms of research for this illness. A lot has been done, but we still do not have a biomarker, neither an appropriate treatment that works for everybody. The Rnase-L has shown to be effective to distinguish ME/CFS patients from healthy patients, but still more money should be invested to see if this RNASe-L abnormalities are present in other illness. That still has to be done, because otherwise we run the risk to put in the bag of CFS/ME everything that we do not know or can't explain. It takes more than a year to rule out all the other possibilities before diagnosing ME/CFS, and indeed everything else needs to be ruled out.

I will update this, when I know more on the biopsy that I need to do.

-------------------------------------------------------------------------------------

This is a summary of the history of the lab test performed to me in the past:

HISTORY OF LAB TEST RESULTS:

HISTORY OF PARASITES:

August 2004 Strong flatulence after following a PEP treatment in July
25/08/05 Single White Worm 2.5 cm in stool (Medication taken:mebendazol) (I do not recall this...but is in my medical file)
August 2005 Blastocystis hominus and Entamoeba Coli
October 2005 No parasites found
Jan 2006 cysts of Giardia Lambia (Medication taken Flagyl)
March 2006 cysts of Entamoeba coli
June 2006 No parasites found
Jan 2007 No parasites found
April 2007 Blastocystis Hominis*
June 2007 Blastocystis Hominis, Helicobacter Pilory, Entamoeba Histolytica.

*Presence of Blastocytis Hominis. This presence of parasites came by surprise, specially after having taken intestinal antibiotic Humatin from January to March 2007, B.Hominis is quite difficult to erradicate, I was told to try Cotrimoxazol together with Humatin, but I will wait until I get rid of E. Histolytica first. There is a lot of controversy wether B. Hominis is a pathogen or not, but what seems to be clear is that when there are too many cysts in the sample, its might be pathogen or at least points the possibility that another pathogen is present, like in my case E. Histolytica.

HISTORY OF SEROLOGY TEST

September 05- March 05

Since I started the Infectious Mononucleosis by EBV in September 2005, cholesterol LDL-183 (Ref 120-160), spleen inflammation, GPT 61 (Ref 5-45), GOT 53 (Ref 5-40), low throbocytes level 122 (Ref<150), and high IgG titers of Mycoplasma Pneumonia IgG 37, HHV6 IgG 1/320 and CMV IgG 490 have been abnormal for many months, but most of them were normalized by March 2006.

Since March 2006, the only abnormally active infection was an abnormally high level of % lymphocytes 48 (Ref 20-45), High Levels of Bilirrubine 31 (Ref 1-17) and a still positive EBV which continued to show acute infection in blood samples either by IgM or by PCR until February 2007:

October 05.......................IgM 23,70 IgG 489 (INFECTIOUS MONONUCLEOSIS)
November 05................... IgM 22,90 IgG 438
December 05................... IgM 33,30 IgG 493
March 7th 06....................IgM 32,00 IgG 560
June 20th 06 ....................gM 32,00 IgG 490
December 06 ..................PCR EBV POSITIVE
February 2007.................PCR EBV NEGATIVE
April 2007.......................IgM NEGATIVE IgG1/160 very low, in the limit.
Augost 2007......................IgM 30 IgG 160


Other Laboratory Test performed in December 2006 in RED LABS in Belgium:

Bartonella Henselae antibody titer IgG 1/128 (this indicates recent infection, although I have not seen a cat in 2 years, which is why immune problem is suspected)
PCR for detection of EBV POSITIVE
PCR for detection of mycoplasma, HHV6, HHV7, CMV, chlamydia NEGATIVE
Melisa: Normal for Hg++/Nj++
Immunobilan: Normal
Immunophenotyping: Normal
Elastase: mildly increased
Elastase 654 in January 2006 vs 358 in October 2006 vs Reference Value <150 (Elastase came down after a 4 month antibiotic treatment with zithromax jam April 2006)
LMW RnaseL: ratio 1,0 (normal 0,5): increased enzymatic activity
RNASe Quantity 1,2 in January 2006 vs 1 in October 2006 vs Reference Value <0,5
RNASe Activity 224 in January 2006 vs 187 in October 2006 vs Reference Value <50
Natural Killer cells: low % and reduced activity
NKC1( %NK Cells in Blood) 4,2 (abnormally low vs Normal Range 9-21)
NKC2 Specific cell Lysis 15,8 (abnormally low vs Normal Range 18,4-43,8)
NKC3 Lytic Activity Index 37,6 (abnormally high vs Normal Range 10-30)
Nitric Oxide in serum: increased
NOSL Nitric Oxide Serum Level 27,7 (abnormally high vs Normal Range <12)
Lactose challenge test: Lactose intolerance (due to bacteria overgrowth probably)
Fructose challenge test: Normal
Stool test: Presence of undigested proteins. No parasites found at that time.

CURRENT SEROLOGY (IgG´s) April 2007


HIV NEGATIVE
BORRELIA NEGATIVE
CANDIDA NEGATIVE
CRIPTOCOCO NEGATIVE
DENGUE NEGATIVE
SIFILIS NEGATIVE
GOTA GRUESA NEGATIVE
MONONUCLEOSIS INFECCIOSA IN THE LIMIT IgG (1/160) IgM Negative
MYCOPLASMA PNEUMONIA POSITIVE IgG 1/512 (IgM Negative)
VHB NEGATIVE
VHC NEGATIVE

VHA POSITIVE
RUBEOLA POSITIVE
SARAMPION POSITIVE
PAROTIDITIS POSITIVE
VARICELA POSITIVE
CMV POSITIVE (IgG 40 very low, no recent infection)



AUTOIMMUNE DISEASES

Anticuerpos Antinucleares (ANA) POSITIVE 1/80
Anticuerpos Anti-DNA 1.7 IU/mL Ref(0.0 - 15.0)
Anticuerpos Extractables (ENA) NEGATIVE

Ac. Celiaquia
Ac. anti-tTransglutaminasa IgA NEGATIVE
Ac. Anti-Gliadina IgA POSITIVE (I will run biopsy soon in my thin intestine to rule out celiac disease)

RECENT CASUAL FINDINGS

Polyp observed through MRI in the left maxillary area close to the nose. It is supposed not to be pathogenic and precise no follow up. Is just mucus. 25% of population has it.

Papiloma observed in the throat by optical exploration by the specialist. (berruga) It is non pathogenic and precise no follow up.

Cyst observed in the right testicule. No pathogenic and precise no follow up.


STANDARD FOOD PANEL (July 2007)

FOOD stats ELISA (IgG)

Highly reactive foods:
Almond and egg whites.

Moderately reactive foods:
Blueberry, sesame seed, sugar cane
Gluten Wheat, Wheat Whole, dairy family products, egg yolk, coffee bean, banana, pineapple and oyster.


---------------------------------------------------------------------------------------------------------


SPECIAL NOTE REGARDING BLASTOCYSTIS HOMINIS AND ITS TREATMENT

B hominis can suppress your immune system and worsen food allergies or intolerance. Some doctors think is a pathogen, some others think is a comensal, and therefore no need to be treated. What is probably sure is that its abundant presence in our flora denotes a poor immune system probably hiding another pathogen such as Entamoeba Hystolitica etc... Please do a TFT to make sure you do not have anything else. Beware that the antibiotica proposed below is quite controversial, and could damage your flora and immunity severily, and needs to be discussed with your physician.

OPTION A

Blastocystis hominis is a real pig of a parasite to treat. Metronidazole sometimes does the trick but there are no guarantees. Alternatively it can be tried the combination of paromomycin 20mg/kg/day with doxycycline 100 mg twice a day for 14 days.

http://www.drmyhill.co.uk/article.cfm?id=44

OPTION B

And another alternatively is a stronger treatment proposed from an Australian website called www.badbugs.org which is the following:

The B.hominis treatment which cures 85% and more of Blasto. infections originate from a Sydney GI clinic. When the clinic began treating this parasite in 2001 they discovered just how resistant it can be to metronidazole (Flagyl), tinidazole (Tinidimax) and Septrin - all drugs which are regularly prescribed to treat this parasite. Because of this resistance problem they went on to trial a number of drug combinations over 3 years before finally settling on their current treatment (below).

Nitazoxinide 500mg 2x daily
Secnidazole 400mg 3 x daily
Furazolidone 100mg 3 x daily

all combined for 10 days

(*A cure is determined by resolution, or great reduction in symptoms combined with 3 fixed samples tested 4 weeks post-treatment)

The meds are available from www.medsmex.com (Mexican based on-line pharmacy) w/out a script. Furazolidone is listed as Furoxone and Secnidazole as Secnidal. They are also available from pharmacies inside of Mexico.

OPTION C

The clinic suggest the following alternatives if Furazolidone and/or Secnidazole are unavailable However Blasto. can be difficult to treat and these treatments may not be as effective as their primary.

Septrin DS (dosage standardized)
Tetracycline hydrochloride 500mg 3xdaily
Nitazoxanide 500mg twice daily

all combined for 10 days.

or

OPTION D

Iodoquinol 630 mg 3xdaily,
Humatin/Paromomycin: 500mg 3xdaily
Septrin DS

all for 10 days.

OPTION E

The natural way with natural remedies suggests the following:

B hominis can suppress your immune system and worsen food allergies or intolerance. Both Berberis and Artemisia annua in combination offer an effective treatment (Tokai J Exp Clin Med, 1990; 15: 417-23), though you need to continue treatment for up to three months.




Amsterdam 8th of July, 2007

CFS Treatment validated by my internist (Post 6)

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)

I just came to see Dr. Garcia Quintana in Barcelona to get a second opinion for the treatment I received from Kenny De Meirleir.

The reasons for this were two. On one hand She is my doctor that has been treating me for the last year, and on the other hand I wanted an expert opinion to validate the treatment proposed. Her opinion was in favor to follow those medications, because all of them make sense in my specific case, therefore I will.

I told her about the skepticism that I found from my house doctor in Amsterdam, who did not want to be held responsible for the treatment, and only gave me prescription for Zenitrex, which is the antiviral proposed by De Meirleir due to my active Epstein Barr Virus through PCR. In Holland doctors are very conservative and are often bound by rules of their practice, the local community and the law. In all medical publications, CBT is still the only effective treatment mentioned and the family doctors only act within what they know, they themselves are not researchers.

The EBV test did get me the Zelitrex, but for the rest there is no clear evidence in his view. The reasons my house doctor argued against this treatment were that Colitofalk is prescribed for severe cases of Crohn disease or colon disease that have not been reflected in my colonoscopy. My internist in Barcelona explained that the undigested protein shows that there is inflammation in my intestines, which cannot be seen through a colonoscopy, because it is actually the thin intestine that suffers from inflammation and bacteria overgrowth in CFS.

As for the L- Glutathione and the Vitamin C and B-12, my internist tells me that this is the same as the cocktail I take of Acetylcisteine with Vitamin C plus injections of Vitamin B12. Basically Acetylcisteine becomes Glutathione after digested, therefore She told me to skip the cocktail and stick to this format.

As for the Zelitrex, She tells me that is meant for Herpes virus, but not specifically for Epstein Barr, but She guess that the doses he is prescribing is high, and that could have a positive effect on Epstein Barr. She explains that with this illness it we have to think out of the box, because only like that we can expect reaction on the body of an immune compromised person, such as CFS patients. There is are studies that Zelitrex at high doses improve the symptoms of EBV, but more research has to be done. She agrees to give it a go.

As for Gabbroral and VLS-3, She says that is a mix of intestinal antibiotics and probiotics, and therefore is a safe combination. She did treat me with Zithromax in the past and my elastase decreased significantly since then. Elastase is a proteolytic enzyme participating in the inflammatory response.

In conclusion:

I will order the rest of the medicines in order to start treatment as soon as possible. My internist in Barcelona agreed with the treatment, but disagreed on such positive prognosis that I will heal completely, in the sense that immune conditions can be controlled and improved, but not cured because they have a genetic base. Well If I do control it and have quality of life is good enough for me... Will keep you posted how do I evolve with the treatment...

De Meirleir visit (Post 5)

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)

I just came back from obtaining my results of lab test performed by Dr. De Meirleir in Belgium. This professor is considered the best professional in Europe for CFS treatment, and is currently making lobby with European Institutions to oficialize the biological markers such as RNASe as a diagnostic tool for CFS, as well as get funds to keep on the research for treatment and causes.

He has the same approach to this illness than my Dr. Ana Garcia Quintana in Barcelona, in the sense that they both use the RNASe test as a confirmatory test for diagnostic, and the use of betalactamic antibiotics for reducing elastases or anti-parasite and antifungal medications to eliminate intestinal protozoos and parasites. Besides the use of probiotics to restablish the intestinal flora.

The following is a trancript of his Medical Report:

1. Medical History:

1.1.Present Medical problems

He became ill in September 2005 after a period of severe stress. After several months he was diagnosed with CFS in Barcelona.
Today he complains of: fatigue (made worse by physical exercise), atention deficit disorder, memory disturbances, spatial disorientation, frequently saying the wrong word, depression, anxiety, emotional liability, sleep disturbance, numb or tingling feelings, severe muscular weakness, non-restorative sleep, decreased libido, recurrent flue-like illness, sore throat, weight gain, muscle spam, muscle aches, abdominal pain, fever, heart palpitations, rashes, hair loss, chest pain, dyspnea exertion, multiple sensitivities with medicines, food and other substances. The symptoms are worsened by extremes of temperature.

1.2. Past Medical history

Surgeries: none
Medication: nutriceuticals, tranxilium 10mg

1.3. Evaluation for presence of CFS criteria

a) Holmes (1988) NO
b) Fukuda (1994) YES

2. Physical examination

Not done

3. Other exams
3.1. Laboratory Test

Bartonella Henselae antibody titer IgG 1/128
Melisa: Normal for Hg++/Nj++
Immunobilan: Normal
Immunophenotyping: Normal
PCR for detection of mycoplasma, HHV6, HHV7, CMV, chlamydia NEGATIVE
PCR for detection of EBV POSITIVE
Elastase: mildly increased
LMW RnaseL: ratio 1,0 (normal 0,5): increased enzimatic activity
Natural Killer cells: low % and reduced activity
Nitric Oxide in serum: increased

3.2. Lactose challenge test

Lactose intolerance (due to bacteria overgrowth probably)

3.3. Fructose challenge test

Normal

3.4. Stool test

Presence of undigested proteins.

CONCLUSION:

A working hypothesis of CFS can be retained. However he probably suffers from intestinal dysbiosis with systemic consequences (inflammatory syndrome, immune dysfunction, reactivation of EBV)

Treatment proposed:

Diet Low in Lactose
Drink 3l a day
a)Gabbroral 250mg is an intestinal antibiotic for chronic giardias and amebiosis, which I had in the past, but i do not have now, at least they do not show up in the lab test.
b)Zelitrex 500mg is an antiviral for herpes virus, i guess that is meant for my epstein barr that came positive.
c)VSL-3 is a probiotic
d)Hydrozyme(tm) is an all-natural non-toxic enzyme product that safely digests most forms of proteins, dead roots and other organic matter
e)L- Glutathione 500mg is a biologically active sulfur amino acid tripetide compound containing three amino acids: L- Cysteine, L- Glutamic Acid, and Glycine
f)COLITOFALK 500MG TABLETS (in The Netherlands is called Salofalk) is used to treat inflammatory bowel disease, such as ulcerative colitis. It works inside the bowel by helping to reduce the inflammation and other symptoms of the disease.
g) Vitamin C 1000 mg a day
h) Vitamin B12 sublingual 10000mcg a day

I will try to book an appointment with him in March to follow up the results...
I will let you know ;-)

By the way, I got fungi again, and I took fluconazol to get rid of it once more, De Meirleir told me that if it happens again I should take Sporanox for 28 days and they won't come back.


Notes regarding NATURAL KILLER CELLS

http://www.immunitytoday.com/hhv6article.html

NK cells are large lymphocyts with a granular cytoplasm, distinguishable from T and B cells by the presence of the surface markers CD16 and CD56 and the lack of CD3 and surface immunoglobulin.

They have the capacity to lyse tumour and virus-infected cells without prior presentation of foreign proteins by antigen-presenting cells.

NK cells bind to carbohydrate ligands on target cells via surface receptors of the NKT-P1A and CD94 families in hmans, and NKR-P! molecules in rodents and secrete various proteases, nucleases and perforin, which results in the lysis of the target.

In addition to protection of the host from intracellular pathogens and tumorigenesis, NK cells secrete a large array of cytokines and are important in immune system regulation.

In vitro experiments as well as studies in humans and mice have revealed the importance of NK cells in the early, non-specific immune response to several viral pathogens.

Current evidence suggest a role for these cells in protecting the host from infection with herpes-viruses, coxsackieviruses, paramyxovirus infections, influenza A virus, hepatitis viruses B and C and HIV.

The spectrum of viruses sensitive to NK cell-mediated destruction is still to be determined, however.

Compromised NK function has been reported as part of a variety of chronic illnesses including genetic immunodeficiency syndromes, chronic fatigue syndrome, depression and AIDS.

Ampligen Treatment? ( Post#4 )

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)


Ampligen & Dr. Lapp ( Post#5 )

On my own initiative, I have contacted Hemispherx Laboratories in order to find out an estimation of when Ampligen will be available in the market, but their answer was that still there is not a date forecast, but it is currently being used as an experimental drug:

"The AMP 511 is a Cost Recovery Program approved by the FDA. This is the only program available at the moment. There are three sites that are accepting new patients (age 18-65).

Dr. Peterson, Incline Village, Nevada (775-832-0989) Dr. Lucinda Bateman, Salt Lake City, UT (801-359-7400) Dr. Charles Lapp, Charlotte, NC (704-543-9692), It may just be Dr. Lapp at this time.

The cost of the drug is $2400 every four weeks plus physicians costs "

The alternative to go to the US to take this program, would cost me 30.000$ a year only for Ampligen, plus living cost and that would imply to quite my job and my income. Besides, Ampligen does not cure CFS, but it improves slightly the symptoms in 50% of the patients, and improves significantly the symptoms in 20% of the patients. It has to be applied intravenously, and is a long treatment that gives results in 18 months.

I called Dr. Lapp to find out whether that was possible for me to take part of that program, and after telling him all my medical history and my situation at work, he advised me to stay in Europe and contact Dr. de Meirleir in Belgium.

He told me as well that the treatment I am receiving in Spain is correct, and that in Spain there are very good specialist on this illness. Nevertheless he recommends taking a second opinion with the team of Dr. Kenny De Meirleir in Brussels, which is where I did my biological markers for CFS prescribed by my doctor in Barcelona. He mentioned 3 names in that team: Dr. Nigf, Dr De Becker and Dr. De Meirleir. Apparently in Brussels they also did administered Ampligen in the past, so I could find it more convenient to try in there instead of joining the program in the US.

He also mentioned that he expects to finish with the last phase of Ampligen in 3 to 6 months, and then it takes 9 months more to put it in the market, once the FDA approves it.

I have already booked an appointment with Dr. De Meirleir in Brussels in October, of course none of this is covered by the medical insurance, but I don't care, because I need to improve my condition. I am starting to feel depressed now with the idea that it has passed a year since I feel sick with my Epstein Barr infection and still I hold the same symptoms. Is like realizing that this has only started, and I want to search for all the help that I can to make the road easier...

It is quite frustating to wake up one day, tired, but somewhat with some energy, start to plan your day while you shower, dress up, and by the time you are ready to go out, you realize that you are exhausted. I need to lay down for another hour before I go out and do 50% of the things you planned to do.

Medical update on my CFS case (Post # 3)

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)


Medical update on my case: (Post # 3)

I went to see my doctor in Barcelona again in August 21st 2006. The reason was that my symptoms had worsened in the last few weeks. This could be explain by various factors:

a) I am starting to work again, and I am increasing the number of days I work to 3, which definitely has an impact on my energy level, I am not always fit to go to the office, and on top of that I am experiencing stress when I am there. Somebody is sitting in my chair and I am switching chairs every week whenever there is a place free. I think I need reinvent a job that I can do with the flexibility that I need with my condition, and preferably in a different environment.

b) Additionally, I stopped with the cycle of antibiotics, and I wonder if that could have an impact and leave my immune system more vulnerable to inflammations due to high elastase levels.

c) Besides, I develop some yeast infection and fungi overgrowth. My doctor in Amsterdam indicated me a cream of Ketoconazol 20mg and Fluconazol 100gr/day until it goes. My doctor in Barcelona agreed with the treatment, although proposed a different doss: 150gr a week during 4 weeks.

Fluconazole is very often given in CFS to decrease the yeast in the intestines and elsewhere in the body. Fungi seem to grow more easily in CFS patients, and most patients get a good benefit from the fluconazole the first time they use it. Certainly the treatment I followed with azithromycin could also have caused some yeast overgrowth.

I took 10 days fluconazol 100gr/day, and it has been effective with the fungi, therefore I have already quit fluconazol, and I only keep on taking the cream for a few days as prevention.

Among the symptoms that have worsened since I do not take antibiotics, the most visible one is the fatigue and the lack of restorative sleep. When I wake up, my respiration acts as if I just run 10 floor stairs, I feel exhausted and with strong breathing. Despite of this, my doctor in Barcelona expects the polisomnography results to be normal, because this exertion after waking up is a very common symptom of this illness and not necessarily will be reflected in the sleep study they just did to me last week.

Another symptom that is worse now is the sore throat, but is also part of the immune dysfunction in the words of my doctor, is not a real faringitis, because there is no pus, there is only inflammation of the throat as a result of an hyperactive immune system to all the aero-viruses that come in through the nose and the mouth. I do not smoke already for 3 years, but I started to smoke socially and very occasionally. She warned me that this is not the time to start smoking because the hydrocarbons you inhale may have a negative toxicity in CFS patients as it has been suspected with other metals such as copper, mercury, etc. So basically, do not smoke in general, but even less if you have an immune dysfunction.

And the third thing that has worsened is the muscular pain and joint pain. This part worries me more, because apart from the general muscle and joint pain, my RSI symptoms are coming back to my arm and my shoulder and that is quite painful when it happens, and this painful symptoms worsen when i am more anxious or stressed.

My doctor has not changed my medication, and hesitated to continue with antibiotics, but decided to wait a bit longer to see the evolution of the symptoms, because it could be just a dip in a fluctuating pattern as it is normally the case.

The only thing She added is a special ginseng that is called Denterococo in order to get more energy. The rest of the treatment remains the same: Antioxidants, Vitamin C, Vitamin B-12, do not work too hard, take good sleep, energy management and rest.

My CFS Case (Post # 2)

Remember that this is juat a post of my blog, and it evolves, so to see the full story go to: www.pochoams.blogspot.com (English) or www.sfc-tratamiento.blogspot.com (Spanish)
My current doc: Josepa Rigau Av Catalunya, 12, 3º, 1ª 43002 Tarragona Spain +34977220358 (I do recommend! hoeopathy and biological medicine, significant improvement)
My previous docs: De Meirleir (www.redlabs.be), Dra Quintana (CMD), (Lots of medication, antibiotics etc... no significant improvement)


SUMMARY OF MY CASE


My name is Carlos Gonzalez and I live and work in The Netherlands since November 1.999.

I started to feel not well in October 2004, when I experienced pain in my wrist. The neurologist in Amsterdam (Dr. Stenvers) diagnosed me with RSI (Repetitive Strain Injury). He explained to me that this pain is caused by computer overuse and stress is a factor that worsens the symptoms. In order to control the symptoms I should reduce the number of hours and follow some exercise program plus physiotherapy.

My RSI complains did not improved as I had to face a difficult period of stress at work, and I searched for second opinions in Spain.

Dr. Verduras diagnosed fibromialgia and prescribed Neubrofen 600Mg and a Muscular Relaxant. I saw no improvement from his treatment, and I did not met the 11 points of fibromialgia, therefore I think I was misdiagnosed.

I went to see Dr. Domingo, and She diagnosed Chronic Neuropathic Pain and prescribed Gabapentine from 300Mg to 1.800Mg during 3 months. The 4th month She adds Amitriptiline to my medication, which I only take for 20 days, and I decide to stop the whole medication because of bad side effects. It was my mistake to do it in a sudden way, because I was supposed to do it gradually.

It was right after this episode, in September 2.005, that I start to feel very sick with extreme fatigue, dizziness, muscle pain, light fever, soar throat, high levels of anxiety, and a panic attack. I was not aware that I was suffering an infectious mononucleosis.

I was persuaded my the Arbo Doctor from the Bank to go to Spain to seek medical diagnostic and treatment. I went to a medical center to do a thorough study. In this medical center I saw every kind of specialist, and also they did all kind of test: Blood test, X-rays, Cervical Resonance, eco etc. What I did not know until then is that I had viruses attacking me and altering all my defenses, increasing dramatically my GOP-53,GPT-61 and cholesterol levels LDL-183. I had an active Epstein Barr Virus (IgM 33>20 IgG 560>20), and very high titers in the IgG of Cytomegalovirus 490 and HHV6 1/320, slight spleen inflammation, and low count of thrombocytes, which all pointed to an infectious mononucleosis, which normally do not last more than 12 weeks.

Commonly, when someone contracts an acute Epstein-Barr virus infection, their doctor says they have mononucleosis (mono). Acute mono causes swelling of the lymph glands, sore throat, sometimes swollen liver and extreme lassitude or fatigue; the patient is usually very ill. Most physicians recognize acute mono readily.

Doctors used to think that mono was just something teenagers contracted. In fact, mono earned the nickname the “kissing disease” because doctors believed teenagers passed the virus back and forth by kissing each other. The symptoms of patients suffering a reactivation phenomenon are usually not as severe. They don’t have the full-blown disease, yet they are not healthy. If they get more rest and take better care of themselves, their immune system becomes stronger and their symptoms improve somewhat. Unfortunately, if they ignore their body’s needs and push themselves too hard, their immune system slows down a little bit more, the virus is able to reproduce more, and their symptoms become worse. However some people with ME/CFS undergo the same viral reactivation scenario as people with acute mono. They endure swollen glands, sore throat, tenderness of the liver or spleen and severe fatigue.

Also, sometimes people with Chronic Fatigue have several of the laboratory changes associated with mononucleosis; for example, positive EBV/CMV titers and a lowering of the white blood cell count.

Because my symptoms were particularly suspicious, from Madrid they directed me to an internist in Barcelona Ana Garcia Quintana specialized in CFS (Chronic Fatigue Syndrome). After exploring me, and checking the test I run in Madrid, She told me that I definitely presented the symptoms of CFS, but there were strong reasons to hold the diagnostic, because I had an infectious mononucleosis still active, and I was in a window period of less than 6 months with extreme fatigue, and other illnesses needed to be ruled out. She also pointed I did have cysts of giardias in my intestines, bacterial entamoebe coli and blastocyste hominis and kidney stones as seen in the lab test and the eco.

Dr. Garcia Quintana performed the 26th of January 2.006 the biological marker on 2-Ä synthetase/RNaseL Antiviral pathway test in Barcelona to confirm her diagnosis for CFS. The lab test results came out positive and finally in February 2.006, I was diagnosed with Chronic Fatigue Syndrome after 6 months of extreme fatigue together with additional symptoms such as myalgia, joint pain, numbness, diarrhea, light fever, cognitive impairment, migraines, low respiration, general discomfort post exercise that extends more than 24 hours, non restorative sleep... These continue to be my symptoms currently with relapses and remissions.

This diagnosis has been supported by five specialist so far: Dr. Garcia Quintana, Pr. Dr. De Meirleir, Dr. Fernandez Sola and Dr. Kurk, Dr Rodriguez de Rivera. Many other test were performed to rule out other diseases such as cancer, depression, lyme, etc…

Dr. De Meirleir recently prescribed a treatment that overlaps at some extent with the one I was taking from Dr. Quintana, but adds new things such as antiviral and anti-inflammatory medications. Dr. Quintana supported his view and I add it to my treatment (see below).

As a result of my sickness, the length of the symptoms, and the hostile work environment, I experienced anxiety, which I treated through cognitive therapy in Madrid from January to April 2006, with psychologist (Javier Rodriguez de Rivera), who ruled out the depression, and agreed with the explanation of the internist for CFS.

There was definitely a before and after in my health and symptoms since September 2005 when I got the infectious mononucleosis, I never recovered from that and it is since then that I feel sick and tired as a default.

*Note:
For people who are genetically predisposed to CFS, a major stressful event is all that it takes to set off the illness, and interferon could be that stressful event, an Epstein Barr infection could have also been the trigger, a major stressful situation at work could have started the whole immune activation...

If some outside agent such as a viral infection comes along during a period of high stress, the system may overreact or even spiral permanently out of whack. This may have very well been my case, because after being exposed to high stress at work, I contracted a viral infection by Epstein Barr, and I haven't recovered since then. In this respect this disease started at work.

That being said, we do know that there are a lot of immune system activation problems in patients with CFS, but we do not necessarily know what the cause is, although the research done points to viral infections as the main responsible.

CURRENTLY:

What defines CFS are the symptoms, the most obvious one is fatigue. Basically you feel jet-lagged most of the time. Is like having a hangover without the fun of having gone out the previous night. There are other symptoms like nausea, joint pain, muscle pain, gases, and diarrhea... There's no known cure. Is like living in someone else body, that from now on is going to be yours. I cannot always think as clearly, and basically I have to relearn how to live life with my new body. It is a little bit like having mononucleosis that never goes. You feel very fatigued, very drained. And no matter how much you sleep, you're still going to feel tired.

A good example to understand how I feel is the following: Imaging that you are wealthy and own a credit card, you could spend a lot normally, and even if you run out of money for the day, you count on your credit card, and your balance will be guaranteed by your reserves. Now imagine that you are very poor, and you only have a debit card, that means that you can only spend what you have, and what you have is very little. Now substitute the word money for energy, and then you will understand your limitations, and if you exceed them they will put you in "jail", bedridden and very sick for a few days...

Since October 2005, my blood also shows typical abnormalities that help to mark this illness, such as low sedimentation rate, atypical high lymphocyte count and high cholesterol ratio. I mark positive for Tandem Romberg, I also show an active Epstein Barr virus, IgG 490 Normal<20 IgM 33 Normal<20.

At the time of the infection it could be observed a past mycoplasma pneumonia infection, Herpes Zoster, Herpes Simplex and high IgG titers of Cytomegalovirus and HHV6. Nevertheless, in recent lab test I did on November 2006 a PCR on HHV6 came negative, but on the other hand they obtained the following findings:

I do have various viruses in activity at the moment:

A) Bartonella henselae AL IgG 1/128. In the opinion of the doctor, Bartonella is a recent infection because of the elevated IgG. I remember that I went to my doctor a month ago because I suffered pleurisies with a strong chest pain, now I make the connection with this bartonella infection, because the pleurisies can be one of the symptoms after the infection. Basically my immune system is so low that I catch all kind of opportunistic infections.

Other bacteria observed in the intestines at the IgM level such as Hafnia alvei/M, Pseudomonas aeruginosa/M, Morganella morganii/M, Pseudomonas putida/M, Citrobacter koseri/M, Klebsiella pneumo/M, Hafnia alvei/A, Pseudomonas aeruginosa/A, Morganella morganii/A, Pseudomonas putida/A, Citrobacter koseri/A, Klebsiella pneumo/A...

Besides muscle tissue was found in my heces, which shows clear problems with undigested proteins.

B) Epstein Barr Virus is still active after one year of the infection; this is a fact after performing a PCR (Polymerase Chain Reaction) which is a DNA detection of this virus in the blood. This can't be put into question, like my arbo doctor or UWV used to suggest that it was an old infection. This shows that this virus actually reactivates and is the main responsible for my dizziness and fatigue. The reason for these viral reactivations is my impaired immune system, as it will be demonstrated by the count of my NK cells.

C) I also show lactose intolerance. Lactose intolerance is the inability to digest lactose, a type of sugar found in milk and other dairy products. It is caused by a deficiency of the enzyme lactase. Lactose intolerance occurs when the small intestine does not produce enough of the enzyme lactase. Lactase deficiency may also occur as a result of intestinal diseases such as celiac sprue and gastroenteritis. Temporary lactase deficiency can result from viral and bacterial enteritis, which could very well be my case.

D) My RNASe L Activity and Quantity remains more less at the same level than 9 months ago. Nevertheless my elastases have come down due to the antibiotics that I took during 4 months, I probably need to take more in the future.

RNASe Quantity 1,2 in January 2006 vs 1 in October 2006 vs Reference Value <0,5
RNASe Activity 224 in January 2006 vs 187 in October 2006 vs Reference Value <50
Elastase 654 in January 2006 vs 358 in October 2006 vs Reference Value <150

The deviation of RNASe from the Reference Value varies. In the Quantity (1 vs 0,5) and the Activity (187 vs 50). Basically RNASe Quantity is the double than the reference value, and therefore from the 187 counted of the RNASe Activity, 100 is the real deviation, and the extra 87 counted is explained by the active Epstein Barr viral infection. This is relevant in the sense that there is treatment for my case, by helping my immune system to get rid of the virus, and keeping on reducing my elastases, we can try to normalize my RNASe so that it can work properly against viral infections.

E) Natural Killer Cells show a totally depressed immune system in my case. Natural killer cell is a cell that can react against and destroy another cell without prior sensitization to it. Natural killer (NK) cells are part of our first line of defense against cancer cells and virus-infected cells.

NKC1( %NK Cells in Blood) 4,2 (abnormally low vs Normal Range 9-21)
NKC2 Specific cell Lysis 15,8 (abnormally low vs Normal Range 18,4-43,8)
NKC3 Lytic Activity Index 37,6 (abnormally high vs Normal Range 10-30)
NOSL Nitric Oxide Serum Level 27,7 (abnormally high vs Normal Range <12)

Basically, the interpretation of these abnormally high numbers is the following.
RNASE is located at the interferon level and is responsible for acting as the main antiviral response of the human body. When RNASE is abnormally high, means that there is a rupture in the molecule, and the immune system cannot work properly.

The high elastase is responsible for this anomaly in the RNASE, and that is why antibiotics that have an inhibitor role of the elastases are recommended, in order to normalize the RNASE.

The PKR is also affected, and this one is responsible for the functioning of the programmed intracellular dead, which is more less the cleaning of corrupted or infected cells. This malfunction may lead to an intracellular inflammation.

The RNASE test is the most specific immune system abnormality that has been discovered in ME/ICD-CFS. There is an increased activity and dysfunction of the 2-5A RNase-L antiviral pathway in lymphocytes. The deregulation of the RNase-L pathway strongly supports the hypothesis that viral infection plays a role in the pathogenesis of the illness. Between 80 - 94.7% of M.E. patients have evidence of an up-regulated 2-5A antiviral pathway; are so positive for this marker. The degree of elevation of 37 kDa Rnase L has also been shown to correlate with symptom severity. This test is as yet not widely available but looks like being one of the most useful tests in helping to diagnose ME/ICD-CFS in the future. (See "Red Labs" for testing information, and see the links:” diagnostic marker”,” markers" and "RNASA & PKR" to know more on this subject)

Dr Quintana originally prescribed the treatment that I follow, but recently She supported some additions of Dr. De Meirleir that I will start in December 2006 as well:

Diet Low in Lactose (Since December 2006)
Drink 3 litter of water
a) 2redoxon tablets a day (Vitamin-C) (Since December 2005)
b) Recuperat-ion (Sodium 740mg + Potassium 200mg + Calcium 15mg + Magnesium 15mg) (Since December 2005)
c) 2Flumicil 600mg (Acetylcisteine) From December 2005 until January 2007 (Not anymore, because I started taking a similar supplement: L- Glutathione n)
d) Acidophilus NAS super strain +B. bifidum Malyoth super strain L bulgaricus LB-51 super strain (Since September 2006)
e) Saccharomyces boulardi 56,5mg (2 pills a day) (Since May 2006)
f) Vitamin B12 injections weekly for 5 week cycles on and off (From July 2006 to December 2006)
g) Denterococo (Since August 2006)
h) Tranxilium 10mg (when required to reduce anxiety and sleep well, once or twice a month)
i) Zithromax (Azytromicine) Mondays, Wednesdays and Fridays with a stomach protector consistent of probiotics during 4 months (Since May until August 2006). They did reduce my elastases from 654 to 358.
j) Gabbroral 250mg (In Spain is called Humatin, generic is paromomycin) is an intestinal antibiotic for chronic giardias and amebiosis, which I had in the past, but i do not have now, at least they do not show up in the lab test.(Since January 2007 til March 2007 - 4 pills a day, the first 4 days of the month only)
k) Zelitrex 500mg is an antiviral for herpes virus, i guess that is meant for my Epstein barr that came positive. (14 days during December 2006)
l) VSL-3 is a probiotic (Since January 2007) ...for a few months, I will skip acidophilus d)
m) Hydrozyme(tm) is an all-natural non-toxic enzyme product that safely digests most forms of proteins, dead roots and other organic matter (Since January 2007)
n) L- Glutathione 500mg is a biologically active sulfur amino acid tripetide compound containing three amino acids: L- Cysteine, L- Glutamic Acid, and Glycine (Since January 2007) ...for a few months
(I will skip the Acetylcisteine (c) I was taking, because it becomes Glutathione after digestion, so I will stick to the L-Glutathione only)
o) COLITOFALK 500MG TABLETS (in Netherlands is called Salofalk, in Spain Claversal) is used to treat inflammatory bowel disease, such as ulcerative colitis or Crohn disease. It works inside the bowel by helping to reduce the inflammation and other symptoms of the disease that take place in the thin intestine, due to bacteria overgrowth, and this can't be seen with a colonoscopy.(Since January 2007) ...for a few months
p) Vitamin B12 sublingual 10000mcg a day (Since January 2007) ...for a few months
q) Additionally for recurrent infections I have used Flagyl to treat cysts of giardias twice in the past and fluconazol to treat fungi in my penis twice as well.

The antibiotics were not prescribed as such in my case, they are used to reduce the intracellular inflammation given by my RNASE, Elastase and PKR, and indeed my symptoms evolved favorably, and my elastase came down from 654 to 358 because of the antibiotics intake.

The treatment with certain antibiotics essentially of the group of the beta-lactámicos can be useful in cases of increase of elastasas, because indeed they have an inhibiting role on them.

A very frustrating thing of this illness is the combination of remission of symptoms periods followed by relapsing periods where the symptoms come back in a stronger way. It is very important not to overpass oneself limits, because normally when there is a remission of the symptoms, we tend to overdo physical and mental efforts, which leads us into a worse relapsing period with stronger symptoms. Once we fall into the relapsing period, we could expect to see ourselves in bed for a whole week.

Basically, what doctors are doing is treating my symptoms at the moment, because is the only thing that is possible to do, given that there is no cure currently for this illness. The best treatment is to rest and practice low aerobic exercise. The main triggers for the symptoms are stress, physical effort and mental effort. Her words to me were: "You have to be specially careful, precisely in your "good days", because is then when patients tend to overdo things"


The Following is a Summary of the Medical test performed in the last 3 years:

BLOOD TEST (DECEMBER 2006)

In the last Lab test of December 2006, besides a positive PCR on EBV it was found a high IgG of Bartonella Henselae 1/128 (showing a recent infection) Low Number of NKC1 NKC2 and High Levels of Nitric Oxide in Serum. Also Elastase levels were high and RNASe L was abnormally high showing a current infection.

BLOOD TEST OCTOBER-NOVEMBER-DECEMBER-MARCH-JUNE (2005-2006)

Acute Epstein Barr Virus Infection IgM 23,7(Ref >20) POSITIVE IgG 489(Ref >20) (INFECTIOUS MONONUCLEOSIS)
High Levels of GOP-53 (Ref 5-40), GPT-61 (Ref 5-45) and cholesterol LDL-183 (Ref 120-160)
Elevated IgG of HHV6 IgG 1/320, CMV IgG 490 and Mycoplasma Pneumonia IgG 37 signaling recent infection or reactivation.
Abnormally low level of thrombocytes 122 (Ref<150)
Abnormally high level of % linfocytes 48 (Ref 20-45)
High Levels of Bilirrubine 31 (Ref 1-17)

In the following months additional blood test were performed, and everything gradually normalized except for Bilirrubine and EBV. By Definition shows an Acute infection when IgM is higher than 20, and a past infection when only IgG is higher than 20. These are the registered results so far:

October 05........................ IgM 23,70 IgG 489
November 05................... IgM 22,90 IgG 438
December 05................... IgM 33,30 IgG 493
March 7th 06.................... IgM 32,00 IgG 560
March 24th 06.................... IgM 4,00 IgG 26 for the first time negative after going to a naturist clinic with an extreme detoxify program of fruits and vegetables
June 20th 06 ………………..IgM 32,00 IgG 490 (Again reactivated)
December 06 ………………PCR EBV POSITIVE

POLYSOMNOGRAPHY STUDY (2006)

Summary: little snoring patient with normally developed sleep pattern, but with somewhat low oxygen saturation (gem O2=57,4%) AHI=1,1

Conclusion: No indications for obstructive sleep apnea syndrome, normal hypnogram.

A) I do present 7 episodes of Apnea+Hypopnea, this means that every hour my respiration slows down almost to the point of not breathing, but immediately afterwards I start to breath again.

B) I also showed 33 Oxygen Desaturation Events. The total time analyzed was 477 minutes, in which the sleep period was 443 minutes with a Wake up during Sleep time of 68 minutes. The sleep efficiency was 85% with 2 awakenings.

SpO2 Statistics

Average Oxygen Saturation: 87.4% Saturation<90% 60.7% of the time 217 minutes
Lowest Oxygen Saturation: 54% Saturation<80% 6.9% of the time 25 minutes
Average Desaturation 6.7% Saturation<70% 3.3% of the time 12 minutes

Average Oxygen Saturation during wake: 89.7%
Average Oxygen Saturation during REM: 81.9%
Average Oxygen Saturation during NREM: 88.7%

C) The architecture of the sleep was normal: S1-34 minutes, S2-36 minutes, S3 or S4-47 minutes, and REM 79 minutes.
(It is tipical in CFS patients a greater % spent in Stage 3 and REM phase)

D) From the 5036 number of breaths detected 846 (16.8%) were below threshold.

Under the opinion of the specialist this results do not show a serious sleep apnea problem to treat, as it would be the case if it was Obstructive apnea. In his opinion my fatigue does not come from my sleep quality, but from the reasons my internist indicated in Spain: Post Viral Fatigue Syndrome.

EFFORT CAPACITY (FEBRUARY 2006)

Capacity of effort realized ́ a progressive test in cicloergómetro up to the maximum. The cardiovascular function was monitored ́ and respiration during the realization of the test. Is realized ́ the analysis of the production of lactate in the immediate post-effort. − observing values slightly below with regard to the expected theóric values, given his specifics characteristics (sex, age...) when reaching the maximum aerobic power, evaluated by the maximum consumption of oxygen realized during the test. An irregular adaptation was observed ́ to the successive imposed charges, observing a diminution of the consumption in proportion to the load realized in the high charges. - The working capacity evaluated by means of the developed work, was slightly low with regard to the theoric value given his characteristics. - The taquicardia was proportional with regard to the realized load

ABDOMINAL ECO (NOVEMBER 2005) CONCLUSION: ESPLENOMEGALIA (spleen inflammation) and Kidney Stone of 4 MM.

CERVICAL RESONANCE (NOVEMBER 2005) Beginning Degenerative Alteration in the Intravertebral discs C4-C5 and C6-C7, with diminishing intensity of signal in the sequence harnessed in T2, with a discreet degree of global protrusion of the disc ring in both levels, without alteration in the configuration of the neural channel.

LATERAL RX TORAX (NOVEMBER 2005) there are not appraised Pleuropulmonar alterations of interest. Cardio Silhouette of normal size and morphology and visible regional skeleton without alterations.

COLONOSCOPY (JANUARY 2006) Everything Normal, only a few INTERNAL HEMORROIDS were found.

COPROCULTIVE: EGGS and PARASITES IN LEES (JANUARY - 2006) Detect Cysts of GIARDIA in the second sample of three.

UROLOGIST EXPLORATION OF MY RIGHT TESTICULE (AUGUST 2005) is appraised a cyst in my right testicle, but it seems to be benign and made of fat. Besides is not right in the testicule but in a membrane adhered which is confirmed with an eco.

ELECTROMIOGRAMA (2004) is appraised an anomaly in the left annular finger, where apparently a conductive nerve does not exist, since two nerves go to the same finger. This fact does not seem to have relevance for the opinion of the neurologist and his diagnostic is RSI (Repetitive Strain Injury)