Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 20, 2013.
This is a short interview with Lombardi on this paper.
Hi Caledonia and all,I do agree with you. Dr.Kenny de Meirleir was invited for a talk to the IAOMT group in Sweden. Researchers and doctors considered afterwards that he was more describing and treating symptoms, than the real cause of ME/CFS. Of course in IAOMT we are prone to blame most symptons on mercury poisoning- but as we think, this is of good reasons. Some PWME´s consulted KDM but had some weird experiences from that. No effect in the long run.I recall that Rich (vank) told that he had seen more than 200 testresults from Vitamindiagnotics Methylation Panels sent to him from people with ME. All, except a few, showed a decreased methylation and low levels of glutathione. As we can see from the gene tests MTHFR and MTR/MTRR polymorphisms are very common in our group and these gene defects, or one of them, are sufficient to make people vulnerable for a partial methylation blockage.It will be very interesting to see more of the results from 23and me. I would guess that many will have polymorphisms in the GST genes which means that they propbably can´t make use of their glutathione in a proper way. At least this is what I have seen when I have studied genetest results from Yasko´s Comprehensive Methylation Panel + Genovations genetest, that includes some GST genes, from a group in Sweden diagnosed with ME and mercury poisoning.If we can´t make glutathione due to decreased methylation , and then can´t make use of the glutathione that we actually have in our bodies, then we can´t detox eg. mercury, mold, toxins from viruses and bacteria in a proper way.Maybe this is a little of topic in this thread, but I just wanted to explain why we in the IAOMT group in Sweden are very sceptical to KDM´s hypothesis. It would be very interesting to get inputs from you on this. Helen
Thanks for answering my questions
Thanks Helene, will write to them, good suggestion. Did you test positive for both ltt elispot and western blot? Did you also test positive for the two co infections tested? I did cpn and bartonella and was negative for both of these. Many thanks
dear Anniekim, alas, I did test positive for everything I sent in.
But I must be honest, and I have wonder if CFS is not an umbrella for a few comparable conditions, or conversely, is it that all these strange manifestations, borrelia, viral infections are all really one condition. I am having serious trouble with this.
Ps. I note we have another Helen in the thread, so I will just sign off Helene-Canada, don't want my babble mistaken for her lucid texts
What you say corresponds to what Rich van K told me after looking at lots of my tests. Glutathione not functioning properly. Rich sent me to KDM, in fact, to address the gut, however, this has not happened as yet.
Cannot eat without pain. Helene-canada
Hi Helene-canada ,
My friends who tried treatment by KDM got even more trouble with their guts so they finished. One of them started on Rich´s protocol and is feeling good after one year of treatment - have been sick for 20. (She also removed her amalgam many years ago).
This study might be relevant in this thread:
Clinical activity of folinic acid in patients with chronic fatigue syndrome.
Joel, thank you very much for your article. I hope you don´t mind my doubts of the trial.
Lansbergen, it is interesting that some of the studies that you link to are about treatment of oral lichen. In Sweden you get free amalgam removal if you have oral lichen. It is stated, they mean, that oral lichen is caused by mercury in amalgam. Maybe they treated a symptom, not a cause in the trials.
In the IAOMT group in Sweden we wished that KDM had noted if his patients had amalgam fillings, or had before.
Yes, dear Rich suggested Folinic acid, and I did as he said, with this and Vit b12, but nothing seemed to alter . The dose is not specified there.
I miss Rich very much. He was always willing to adjust things, to help, such a decent man...I just don't know where to turn with him gone.
The other point I wish to make is that for a decade now, I have gone to a variety of CFS specialists,borrelia specialists, and the cardinal problem is that they give a protocol, and then one just goes home and has to try it. The doctor is far, overseas, across the continent. This results in telephone medicine. Ok, so I tried to park myself near the doctor, but that did,not change because he is usually busy sees you for a few minutes, and agin, off you go with try this.
Some folks aren't that sick, and this works, but for delicate constitutions and very sick people there should be a clinic like setting where one is helped and monitored every day for several months.
I looked at evita, but they have no MD doctors there, only naturopaths. The closest I see is Augsburg, but,you do not sleep there.
Snowathlete, may I ask which gut tests you have recently done? Perhaps cdsa, sibo, leaky gut? Many thanks
Not at all Helen. I welcome a healthy discussion and sharing of views!
I've had the stool test to look for bacteria etc, the redlebs one. Also soluble CD14. I understand this is an indicator of leaky gut. I think it's related to lipopolysaccharide (LPS) in your blood, that can get through your leaky gut, but i dont know much more than that yet.
" if CFS is not an umbrella for a few comparable conditions"
Most likely so. We have a condition with multiple, somewhat vague definitions each of which circumscribe a wide variety of symptoms. Some of these are specific, such as getting vertigo after acceleration (being passenger in traffic), becoming suddenly knocked out a certain time after exposure to normal heat (hot shower, normal hot outdoor temps), while others, at least in words, describe effects of any debilitating chronic disease.
Fatigue in particular is a misleading term; I've done 180 mile bike rides through hilly country and had nothing like the wipeout delivered by CF/ME/whateveryacallit. It's a sensation more like one's blood draining out.
A more specific list of symptoms may correlate to a specific underlying disease, and we may find several symptom patters which _may_ link to different diseases. We could also be in different stages or manifestations of a common disease.
But right now we only know the effects and have a feel for the causes.
This is definitely a condition of no interest to the lazy of mind. They don't "get it" and never will.
you know whats interesting...a couple of months after i got sick, i started having weird gut reactions to food....and also i would go through phases of diarrhea and constipation ..i knew there was something wrong in there but didnt know what. i would wake up with the WORSE imagineable nausea for months. these episodes went on for years.
eventually, the old gut symptoms stopped. but then, i started having HORRIBLE flatulence. and these weren't just any farts......they were so intense and horrid, that my own family would not want to sit beside me anymore. my own mother got up from a bus seat beside me once and changed places!! again, i knew there was something very very wrong inside me but didnt know what.
that went on for several months..maybe a year or 2...i cannot remember....and then it all stopped. now..i KNEW that didn't mean i was better, cuz my CFS was very bad....i kind of felt like, the gut reactions i was having was sort of a good thing - like my body was trying to do something - but it had lost and given up. it couldnt kill the bad bacteria anymore, hence maybe the gases had stopped(?)
then, another strange thing started to happen....my whole back and shoulders started to get cystic acne! this went on for a couple of years..i even went to dermatologists and used topical creams because I could not even sleep sometimes from the painful pustules! i think i still have some scarring.
again, my CFS was getting worse and worse and I knew something very insidious was going on. it was as if the bacteria was going from my gut, right into my bloodstream! my gut could no longer stop it!
this is certainly what happened to me. got a pretty bad "cold", after which i was lactose intolerant. lost my immune system right there. And, as the old saying goes, it was all downhill from there. one thing progressing to the next. will be checking for lymphoma soon, actually asap.
Hi Everyone. Not sure what to make of this paper. Other than to say it certainly seems relevent to me presently. Ive always had gut problems. recently had two ( just outside of the colon ) abcesses, and will be haveing a crohns test. I am also suffering from and being tested for bone problems ( possibly inflamation) in my shoulders knees and feet. and recently suspected stomach ulcer. over production of stomach acid. Body aching i would certainly suggest is autoimmune, as might be bowel and stomach problems that i have always had. And are now getting far worse. I will keep everyone updated on the crohns test and the bone investigations. Interesting paper. Autoimmune is a word ive been reading a lot lately with my present problems Hmmm
Wow - thanks Joel - this explains so much - and thanks to KDM for his sheer hard work and persistance.
This confirms other studies. The HERV study results from Tufts University are due this year. The current scientific understanding is that certain viruses such as EBV and herpes viruses 1-9 re-activate HERV viruses which are inherited and part of human DNA. These HERV viruses contain super-antigens which cause havoc for the immune system. This leads to chronic activation of the immune system and higher usage of ATP and to total exhaustion of the body.
HERV's are also implicated in AIDS and MS, but they are not the root causes. HERV is a secondary effect of some other attack such as Herpes viruses 1-9 or some other virus which acts as the trigger mechanism.
On superantigens and autoimmune disease:
It has been proposed that SAgs might contribute to the pathogenesis of autoimmune disease by activating T cells that are specific for self antigens. Although there is no direct evidence of SAg involvement, it has been suggested that SAgs could, under the right conditions, break the tolerance or suppression of auto-reactive T cell clones and induce a state of autoimmunity. Evidence for this hypothesis came from an animal model of multiple sclerosis: experimental autoimmune encephalomyelitis (EAE), where it was shown that administration of SEB to mice recovering from EAE triggered direct stimulation of the Vβ3 positive auto-reactive MBP peptide specific T cells resulting in a rapid relapse of the disease [73,74].
Conrad and colleagues found a biased TcR usage in T cells from IDMM patients towards Vβ7 suggesting the activity of a SAg . They showed that the mitogenic activity was encoded by a gene residing on an endogenous retrovirus, named IDDMK1,222 and that viral expression occurred only in IDMM patients. It was shown later by the same group that IDDMK1,222 is identical to one allele of the EBV-inducible HERV-K18 carrying the Vβ7-specific SAg K18·3  (see above)." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1808794/
I would like to point out though that if we have LPS in the blood, and we have any of the bacteria or viruses that produce superantigens, then superantigens will likely get into our general circulation as well - LPS is a marker of detox failure in my opinion. Staph aureus is the classic superantigen producer, but it is far from alone. Various staph and strep bacteria produce these. Its also worth noting that we tend to have chronic staph or strep nasal infections. Even mycobacteria make them. EBV is thought to have a superantigen.
I am interested in gamma delta T cells due to their super sensitivity to bacterial toxins/markers and their function in suppressing excess immune stimulation. They activate or deactivate the immune system, talk to dendritic cells, and accelerate wound healing.
It would seem, most of the degenerative diseases would originate and emanate from the gut, as that is where most of the things enter our body, good and bad. It would also explain why the immune system also evolved mostly in the gut, to deal with this stuff. We should know much more than we do!
i agree. no wonder the small and large intestines are supposed to be as big as a football field, if combined and unfolded....and it has been largely ignored all this time! the brain is full of folds too and we hardly know anything about that either.....the gut is like a second brain, they say now.
my doc says "whats there to know? there is bacteria...it digests your food, your nutrients are absorbed, thats about it" WTF!!!
Hi to everybody,
I first studied the paper and throw several questions, that I have yet to discuss with some of you to try to solve them. I will also consult with some experts on the subject. Anyhow, and after having "dissected" again the study, I have actually realized that my doubts are actually beyond what it's explained in the paper, in an effort to put together these pieces in order to understand how all this could actually lead to an autoimmune process and finally to the symptoms of CFS.
I have written an article quite similar to that of Joel, in Spanish. I am posting it here for what it may be worth:
There's no need to translate this into English, thanks to the fantastic job Joel and others are doing. However, I enjoyed preparing this drawing in English, and I thought I would share it with you. Maybe some of you can help me out with the interrogation marks I have placed in the sketch, and of course, probably some of you will correct it... It can be funny!
You can also try a Google Site Search
Separate names with a comma.