Friday, December 15, 2006

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...

10 comments:

Anonymous said...

Dear Carlitos,

I am a patient of Dr. De Meirleir too, and I would like to warn you on his prognosys. He is ALWAYS too positive, and that's a way to encourage a patient, but eventually your doctor in Spain is right, he will not guess.
He once told me that in a year I would be healed, then he changed his mind and said that the prognosys is always unknown and that the only way to get healed is "spontaneosly"... this is literally what he told me.
I had all the viral markers being negative, nevertheless he prescribed a non recognized anti-viral medicine called Nexavir with many doubtful side-effects...
Not to discourage you, but take everything he tells you with a double opinion from your spanish doctor.
Ciao ciao!
Massimo (maxupolo@tiscali.it)

mario ruiz said...

Hola Carlos, me ha encantado tu blog, todo lo que cuentas en él y más aún la forma de contarlo. No así la causa por lo que lo haces claro.

Perdona que no escriba en ingles, pero se me va la olla y el vocabaulario se me va, yo tambien tengo SFC.

Tu información es muy buena y clara.

Gracias de nuevo. Feliz año.

Mario Ruiz.
www.fibrofatiga-unidos.info

tom said...

good luck to you - i have no more info on valganciclovir than i linked to in my blog entry - as to your other question, no, nothing ever worked for me. i stopped even trying more than 10 years ago, so i can say nothing about more recent therapies

Anonymous said...

Your blog is very interesting, I will check back to read updates. I am wondering if I should investigate getting Dr Meirleir's tests for myself. Do you know of anyone who has got better using his treatment?

I am looking at your list of links, and I can't see a link to this website - http://www.investinme.org/ - you can see on that website that there will be a conference in May in London, and Dr Meirleir is one of the speakers. You should tell your doctor about it, in case they will go to it and learn more.

carlitos said...

Anonimo:

More than geting De Meirleir test, you might first try to get a specialist in CFS/ME to see if you meet the clinical diagnostic. After that you can obtain confirmation measuring your RNASe L, elastases, Nitric Oxid in seum, NK cells, Heavy metals or virus activity by PCR with De Merlier, that will reflect if you have those abnormalities in your immune system, but is not an oficial diagnostic test that can be claimed legally, but it will be enough for yourself to know...
As for your questin if i know someone that has been cured by him, the answer is not, and my Spanish doctor already told me that a immune condition can be controlled and improved, but not cured... so basically you need first to know if you hold this diagnostic ruling out the rest of possibilities, ad after that get treatment to make the best out of it...and a lot can be done to improve your condition... but i am still on the road to recovery, improving, but still having bad relapses... i just record my progress here, so that it can be useful for somebody else as well..
All the best
Carlos

Anonymous said...

Carlos - I have been ill for over 10 years. I am in England - my diagnosis is CFS, but there is no ME/CFS specialist to confirm this. But I think I do have it. If I have the RNase test that will confirm it to me.

carlitos said...

anonymous:

I can't reply to you directly because you are anonymous, but the answer is already in my previous anwser... RNASE-L is just a confirmatory test, which is not yet official, which means that altough it is quite significant test with a high grade of validity, oponents still say that RNASE-L could show abnormalities in other illnesses as well... That is why a clinical diagnostic by a specialist in CFS is needed before you do these test. If you want an appointment with De Meirleir, you will need to travel to Brussels, his number is +3222668740 But again, I would first look for a local specialist, and would try to rule out all the other possibilities... Hope this helps.

Louis said...

Carlos, this advice may sound very simplistic but try taking a high dose of vitamin D for a while and see if that helps your symptoms. I had very similar symptoms to those you described and it was determined by blood test that I had a vitamin D deficiency. I imagine that you living in Amsterdam don't get a lot of sun exposure which could contribute to a vitamin D deficiency. I have been taking vitD at 1600IU/day for about two weeks now and have noticed a marked improvement in my symptoms. At the dosage I am recommending it would take many months before you develop any sort of toxicity of vitamin D. Try it. I hope it helps you.

Louis

Anonymous said...
This comment has been removed by a blog administrator.
zanahoria said...

You have a very interesting and well written page, thank you.
I wonder if you know about the Yasko treatment and the DAN treatment (Defeat autism now). There are so many similarities. What they do is basically remove everything that irritates the body, such as viruses, infections, gluten and casein. It is very similar to the treatment you are already followinng, but with these additions:
removal of heavy metals if that is a problem
methyl B12 instead of ordinary B12 for those who lack the bacteria to change the cyanocobalamin to the form we use, methyl cobalamin
SCD diet for wrong microflora in the stomach. A diet without starch and sugar. In the beginning only greens and fat and meat and fish, then adding in first fruits and nuts then when you are well starch and sugar
a lot of probiotics including remented vegetables such as achar or sauerkraut
enormous amounts of vitamin C whenever you get the flu etc
nevrofeedback for better concentration
low oxalic acid diet for muscle pain but also other symptoms. See yahoo group "trying low oxalates"
excercise - but this is difficult with M.E. :-(

Did you consider these additions to you treatment?
I did everything except the heavy metals and the parasites. I am so weird that I hope I have parasites, because that would explain a lot of my problems the last ten years! :-)

Tove from Norway