CVID
I found a new doctor in my city who is an expert on bacterial infectionsi treating mostly patients with lyme, tuberculosis and he is into Cpni too knowing all the protocolsi and different approaches.
He says he never found anybody who kicked Cpn using one of these multi-abxi long time protocols. If Cpn is the real cause of a patients problems, you kick on Doxyi within a few weeks. If Cpn persists even by applying one of our protocols then it's the failure of the innate immunate system which enables Cpn to persist. Abxi can't win the battle over neither in such a case.
He told to go off abx, which I already had been since the beginning of December 2009. I've been only on enzyme Q10 und NACi since then. It has made no difference. Cpn-IgAi titres went back from negative to positive since then. That doesn't bother him. He says, titres are still pretty low and similar levels could be found in most of the population.
And here is his diagnosis:
CVID
http://en.wikipedia.org/wiki/Common_variable_immunodeficiency
According to that my pneunomniae in 2001 caused by heavy exposure to mycotoxines and Cpn brought my genetical dysfunctioning of the immunei systems to surface. It started it up like some diabetis 1 cases get triggered by viral infections. But it didn't cause it and therefore cannot be reversed by battling Cpn (alone).
Anys opinions on that anyone?
Greez
A
PS: He is highly suspicious of Marshall, too.
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Andreas, a doctor who; as you say "he is into Cpnii too knowing all the protocolsi and different approaches" is from my perspective, aware perhaps of different protocols but not a doctor that knows and understands the CAPi CPn protocols that are discussed here on this website.
"He says he never found anybody who kicked Cpn using one of these multi-abxii long time protocols." It sounds like he has not used any of these CAP protocols and therefore would not of course have found anybody doing well on them or after the recommended duration of time on them from what I hear in your statement.
"If Cpn is the real cause of a patients problems, you kick on Doxyii within a few weeks. If Cpn persists even by applying one of our protocols then it's the failure of the innate immunate system which enables Cpn to persist." Well perhaps this could be true if most people have acute CPn infectionsi treated when they are new into the body. But since CPn was not considered a bacteria but had been seen as a virus until the early 1990's then most of those in my generation had a great number of these respiratory infections as "bad coughs and colds" over the course of our lives, or they were considered "walking pneumoniae of viral origin and they were not so overwhelming that many went out and about and to work etc spreading the EB's as they coughed repeatedly.
Going of abxi "made not difference". That statement does not give much information regarding your situation what did you mean by it?
"According to that my pneunomniae in 2001 caused by heavy exposure to mycotoxines and Cpn brought my genetical dysfunctioning of the immuneii systems to surface."
Currently I am persuing genetic testing you might look at some of my recent topic forum posts. However one describes why some folks tolerate large loads of CPn co-inhabiting their bodies and others do not, the fact that there is persistent chronic intracellulari infections making life unbearable, choosing not to treat it is up to you but one year on this protocol is not long enough to stop cold if you really are harboring the pathogen. It will potentially be back to haunt you perhaps.
Good luck with your new approach. Louise
Just because a doctor is 'an expert' in infectious disease, doesn't make them proficient or current, nor does it make them all-knowing. Doctors are mere humans; they have egos, predispositions, prejudices and failings.
Sorry, but this doctor sounds like the big-shot infectious disease doctor I saw`when I first started abxi; an ostrich, with her head planted firmly in the sand.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
>Going of abxii "made not difference". That statement does not give much information regarding your situation what did you mean by it?
It made no difference on my level of energy, my food intolerances and my lack of libido. All these things improved temporarily during my time on the capi but then went back to the usual plight.
And during the last couple of metroi pulses I had no reactions to them either. The whole cap didn't effect me anymore at some point I had reached about 6 month being on it.
This is difficult to interpret though. I know I'm just guessing.
And another astonishing thing: My MBL level is perfectly low. MBL is Monase Binding Lectin. It indicates any kind of infection in case it is high. You can be sure to have no infection when it is low. But my interferon gammai is high and interleukin 2 is high, too. The interpretation of my new Doc is: the immunei system is neurotic keeping itself in high gear without necessity thus causing trouble. A panic without a cause, so to say. Now he wants to find out how to make it become more relaxed doing blood testing on different pacifying substances.
A
Male(44).Germany.Immunei defficiency.Cpni+.CAP08/2008-12/2009.Q10,NACi.Diagnosis:CVID.
MBL is another thing I hadn't heard of. Google tells me that the proper spelling is probably "Mannose" binding lectin. It does seem to indicate infection, but the absolutist statement that "you can be sure to have no infection when it is low" is most unlikely to be true.
As for "If Cpni is the real cause of a patient's problems, you kick on Doxyi within a few weeks", it sounds like this guy has never read any of the laboratory research which finds that Cpn has a persistent state in which it is resistant to antibioticsi. This is not fringe stuff, in the research community, but rather completely accepted, with many papers published on it over many years.
CVID "with prevailing T cell dysregulation" is (literally) my new Doc's diagnosis.
Let's see what happens in the further course of treatment. I'll keep you posted.
A
Male(44).Germany.Immunei defficiency.Cpni+.CAP08/2008-12/2009.Q10,NACi.Diagnosis:CVID.
I got new results. The lab checked serveral immunei parameters twice over the last few weeks. My new Doc says the overall picture appears to be stable and the results leave no room for various interpretations. The message is: there is some herpes viruses and there is some Cpni, but all of them are irrelevant. He distinguishes "deep infectionsi" from light ones. And all my other immune parameters clearly indicate that there is no deep infections at the present time.
He's not denying Cpn about a year ago before I went on the Wheldon protocol might well had been a deep infection. And it probably caused what was also found now: interferon gammai is much to high. Doc says, some deep infection brought my interferon gamma out of range and this still goes on even though the primary cause has been removed. What's left is an immune regulation problem.
Interferon gamma being continiously to high leads to lack of energy, misguided immune activity and overall poor immune performance. He says there is a range of immune activity leading to good immune performance. If your parameter is out of range you run into trouble no matter wether it's to low or it's to high.
He prescribed me a product called "Biobran" in order to elevate interleukin 10 which is the antagonist to interferon gamma. This will lead to a balance on a to high level, but then there will be a balance after all. Then both will be regulated down simultaneously.
All I can say so far is that it feels good. I've been on it for about 2 weeks now. I'll keep you posted.
A
PS: As to Biobran: http://www.biobran.org/
Male(44).Germany.Immunei defficiency.Cpni+.CAP08/2008-12/2009.Q10,NACi.Diagnosis:CVID.
Male(44).Germany.Immunei defficiency.Cpni+.CAP08/2008-12/2009.Q10,NACi.Diagnosis:CVID.
"If Cpni is the real cause of a patients problems, you kick on Doxyii within a few weeks"
It took me about 6 months of azi AND doxy to get rid of my asthmai. I've been free of asthma for 1.5 years now. If I had stopped taking abxi after just a few weeks I would still have asthma today. Sorry, but he does not know what he's talking about.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
>What, exactly, does 'kick on doxyii' mean?
You're on Doxy and still you can't get the bug back under control
A
Male(44).Germany.Immunei defficiency.Cpni+.CAP08/2008-12/2009.Q10,NACi.Diagnosis:CVID.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
>Okay, your new doctor is saying you should be able to 'kick', or wipe out, cpnii with a few weeks of doxycycline?
Partly right. He says, a few weeks Doxy should suffice in order to reduce Cpn from a deep infection back to a light one. He says, it suffices to reduce it from deep to light to be healthy again. It's not necessary to wipe it out completely which is almost impossible.
A friend of mine has even higher Cpn titres then I ever had and is completely healthy. My ex-wife had the same kind of troubles I've had. She had elevated Cpn titres at that time, too. She took Doxy for about 3 weeks, had terrible herx and bounced immediately back to normal, her Cpn titres unchanged.
My new Doc says, all my immunei parameters indicate that I have no deep infection what so ever. There is no bug be it bacterial, viral or protozoe which is troubling me. What troubles me is my own way to active immune system. Trying to calm it down being his approach of therapy...
A
Male(44).Germany.Immunei defficiency.Cpni+.CAP08/2008-12/2009.Q10,NACi.Diagnosis:CVID.
My new Doc follows the theory outlined in this book:
http://www.amazon.de/gp/product/images/1595941797/sr=8-1/qid=1269973826/...
A
Male(44).Germany.Immunei defficiency.Cpni+.CAP08/2008-12/2009.Q10,NACi.Diagnosis:CVID.
AndreasHH, Dr. Bell was one of the first to recognize and treat CFIDSi..
http://www.prohealth.com/library/showarticle.cfm?libid=13124
My daughter (11) had a pneumoniae recently. She was in hospital for a week. They treated her with Clarithromycin and another antibiotic, which I don't know. Doctors in the hospital asume the pathogen was either Mycoplasma pn. or Cpni.
I got infected, too. One night it felt like I was going to develope a pneumoniae, too. But by the next morning the plight was gone and turned into what felt like a normal flu. It stayed around for a couple of days than vanished. I did apply no antibioticsi at all. I restarted taking NACi in order kill Cpn spore and test for Cpn load - no reaction at all. Taking NAC simply made no difference.
What is most amazing: I feel much better since I ran into this nearby pneumoniae. My level of energy has improved, food intolerances further reduced.
I can get rid of a Mycoplasma pn. or Cpn infection without even applying a single antibiotic, doesn't that proof, the bugs don't have a hold on me any longer?
My new Doc says a shock sometimes sets immunei dysregulation straight, reboots the system so to say. He was about to treat my with Viathen A, a substance which in laboratory testing turned out to work best on regulation. Now he put me on a 4 weeks wait to see how I develope on my own.
(Being prone to bacterial infectionsi of the respiratory organs seems to be in my family. My father was inclined to that kind of infections, too. It must be in our genesi.)
A
Male(44).Germany.Immunei defficiency.Cpni+.CAP08/2008-12/2009.Q10,NACi.Diagnosis:CVID.