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VDR alleles

Lotus97

Senior Member
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2,041
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Huh ???? Sorry but I do care !!!!

For those others may be confused by you cutting out a snippet out of context, here is my original paragraph:

Heck personally I see a lot of people on here with bad health states but with honestly not that bad of genotypes (at least for SNPs we know of). Also though I am on these boards ... I don't have CFS. Rich and I arrived at that conclusion a couple years ago looking at a NutraEval from Genova and multiple other labs. Later I learned I have an autoimmune disease of the CNS (and periphery) and not a benign one. So why am I here? Because supplementing for the folate and methylation cycles helps me with some (I note SOME) of my symptoms. On the other hand if you took my glucocorticoids away from me, you might as well put a gun to my head. My point, as unsatisfying as it may be, is there may be MANY causes or triggers, but so many of us end up in similar places and treating some of the most fundamental biochemical cycles is one of only ways after years and years of damage to get the body to do some constructive rebuilding from the inside.

People have been chasing autoimmune and viral links for CFS / ME for awhile. XRMV for example was pushed for years but is a total bust. We will see if HERV pans out. Anything is possible.

The problem is CFS is not likely from one source anyways. People arrive at the same place for different reasons. That is what makes it multifactorial and so complicated. That being said now that it is an accepted disorder I am sure headway will be made and I would not put it past a micro-organism root cause for many CFS patients.
I think you misunderstood my post. What I meant was that I wasn't trying to convince you that you have CFS from that article. Some people who use these forums say they "have a B12 deficiency, but not CFS". I assumed you did not want to be labeled as having CFS for whatever reason. I'm not sure why you took that as an insult because that wasn't my intention at all. And since my response to your post had nothing to do with methylation or SNPs I didn't see the need for including those lines "for context". I don't necessarily disagree with you either about being many triggers leading to the same illness, but if you think that then I don't know why you don't say you have CFS/ME. Lyme disease seems to be the cause of my illness. I don't know if that means I have CFS/ME or not. I'm not really concerned with labels. Some people have suggested that Lyme disease is an autoimmune condition. I don't know if that's true or not, but there doesn't seem to any consensus on that. I'm also not sure how much that has an impact on treatment. Someone told me about the HERV information when that article came out because they thought it was significant, but I haven't read through the article myself. I'm more interested in things that I can immediately apply to my own health. That's also why I haven't spent much time learning about the theory behind methylation as far as what is actually going on. I don't have the brainpower for that kind of stuff right now, but maybe later I would like to have a greater understanding of these subjects.
 

dbkita

Senior Member
Messages
655
I think you misunderstood my post. What I meant was that I wasn't trying to convince you that you have CFS from that article. Some people who use these forums say they "have a B12 deficiency, but not CFS". I assumed you did not want to be labeled as having CFS for whatever reason. I'm not sure why you took that as an insult because that wasn't my intention at all.

Fair enough. But I am sorry what you wrote in the prior post "I don't care if you don't have CFS/ME," not sure how else to interpret that without additional context like you just provided. Ergo my response.

And since my response to your post had nothing to do with methylation or SNPs I didn't see the need for including those lines "for context".

I obviously did that because others who may be reading the end of the thread and not the whole thing may not otherwise understand why I was talking about my own situation as an example. Also I think it was directly relevant to may later point in the post about there being many ways to end up in the same place and looking for a one shot explanation is a fruitless endeavor.[/quote]

I don't necessarily disagree with you either about being many triggers leading to the same illness, but if you think that then I don't know why you don't say you have CFS/ME.

Because it is illogical to put well defined autoimmune disorders and lump them into CFS. An MS patient has MS. A Hashimoto's has Hashimoto's. A person with Lyme's has Lyme's. Some would argue the latter causes CFS symptoms. Big deal. The important thing is each need their OWN treatment protocol.

If you want to label every autoimmune or chronic infection disorder as CFS then got for it. It simply devalues the disorder in terms of diagnostic scope and accuracy. All that matters is the end "prize" of what is the appropriate treatment protocol to get better health. Everything else is sophistry imo. For many people sadly CFS is NOT the real diagnosis. It is a kitchen sink they get classified into by various alternative MDs.

If you have Hashimoto's you will NEVER get better without proper thyroid treatment (and I don't mean levothyroxine). If you have Sjorgren's you will NEVER get better without glucocorticoids. If you have Celiac's you will NEVER get better unless you stop ingesting gluten. If you have Lyme's you have to work with a qualified LLMD and got about treating Lyme's. Whereas if you took a random CFS patient off the streets and gave them Lyme's abx and herbs they would feel like *bleep* and I am not talking about Herx reactions. Then there are others who despite oodles of differential diagnosis fall through the cracks and are still sick and no one really knows why. At least some of the pioneers on these forums like Rich and others set out to look for common ground that would help people across a myriad spectrum of problems that had been lumped under CFS.

I really don't get your logic that if there are indeed multiple trigger for CFS that ALL triggers imply CFS. That is not logical imo. And even then it is not helpful. Personally, I have a well-defined autoimmune disorder along with Celiac's and diabetes insipidus. I did not start to get better UNTIL the actual REAL diagnoses were made and appropriate treatment selected. I came to these forums looking for possible answers and if I had CFS and found out I did not. But some of the folate / methylation protocols still aid me in certain ways.

Lyme disease seems to be the cause of my illness. I don't know if that means I have CFS/ME or not. I'm not really concerned with labels.

I am sorry to hear that. Then why not start working with an LLMD. Get test verification and start treatment. Treatment can be rough but is essential for a Lyme's sufferer. Messing around with supplements will imo do squat for someone with Lyme's or other co-infections. I apologize if that is not something you want to hear.

Some people have suggested that Lyme disease is an autoimmune condition. I don't know if that's true or not, but there doesn't seem to any consensus on that.

First time I have heard that one. I always though Lyme's was a complicated infection with three different disease states because of its various life cycle forms. If autoimmune in anture, what antibodies are being produced that attack endogenous tissue? Odd since autoimmune disease are treated with immunosuppressants in most cases (exception Hashimoto's to bypass thyroid with T4/T3 medication). But I had always heard people with Lyme's who go on prednisone or other similar meds tend to get MUCH worse over time. For example one doctor who originally though I might have Lyme's and put me on a trial Lyme's treatment protocol (that btw was really awful), admits that my chronic use of supra-physiological glucocorticoids for my autoimmune disease would have completely destroyed me if I had Lyme's via immuno suppression.


I'm more interested in things that I can immediately apply to my own health. That's also why I haven't spent much time learning about the theory behind methylation as far as what is actually going on. I don't have the brainpower for that kind of stuff right now, but maybe later I would like to have a greater understanding of these subjects.

Fair enough. Then if you think it is Lyme's why not see an LLMD and get started? Good luck and God bless!
 

greenshots

Senior Member
Messages
399
Location
California
I agree with you dbkita, it seems that many roads lead to Rome but chasing down that one bug like Lyme or XMRV or whatever hasn't been very helpful. But I also think Lotus wasn't trying to say she didn't care in the literal sense, I took it as she didn't think it mattered whether someone had another chronic problem or CFS, that we're in the same boat. I learned a while back that the way I phrased some things rubbed people the wrong way when I really didn't mean it harshly or critically. Internet conversations really lack some important parts of communcation.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Because it is illogical to put well defined autoimmune disorders and lump them into CFS. An MS patient has MS. A Hashimoto's has Hashimoto's. A person with Lyme's has Lyme's. Some would argue the latter causes CFS symptoms. Big deal. The important thing is each need their OWN treatment protocol.

If you want to label every autoimmune or chronic infection disorder as CFS then got for it. It simply devalues the disorder in terms of diagnostic scope and accuracy. All that matters is the end "prize" of what is the appropriate treatment protocol to get better health. Everything else is sophistry imo. For many people sadly CFS is NOT the real diagnosis. It is a kitchen sink they get classified into by various alternative MDs.

If you have Hashimoto's you will NEVER get better without proper thyroid treatment (and I don't mean levothyroxine). If you have Sjorgren's you will NEVER get better without glucocorticoids. If you have Celiac's you will NEVER get better unless you stop ingesting gluten. If you have Lyme's you have to work with a qualified LLMD and got about treating Lyme's. Whereas if you took a random CFS patient off the streets and gave them Lyme's abx and herbs they would feel like *bleep* and I am not talking about Herx reactions. Then there are others who despite oodles of differential diagnosis fall through the cracks and are still sick and no one really knows why. At least some of the pioneers on these forums like Rich and others set out to look for common ground that would help people across a myriad spectrum of problems that had been lumped under CFS.

I really don't get your logic that if there are indeed multiple trigger for CFS that ALL triggers imply CFS. That is not logical imo. And even then it is not helpful. Personally, I have a well-defined autoimmune disorder along with Celiac's and diabetes insipidus. I did not start to get better UNTIL the actual REAL diagnoses were made and appropriate treatment selected. I came to these forums looking for possible answers and if I had CFS and found out I did not. But some of the folate / methylation protocols still aid me in certain ways.
I agree with you for the most part about not lumping everyone together, but this actually sort of a paradox. It true that treatment needs to be custom-tailored to suit the individual, but then it also nice to have a place like Phoenix Rising to bring everyone together. And I also agree with what you said earlier about how methylation and ATP/mito supps will only take a person a certain distance. Maybe people with certain genetic issues related to metabolizing B12 and folate will experience a complete recovery, but I'm not sure about people with other underlying health issues. I was curious what you thought about that article partially because someone else I spoke to seemed to think it was important. I don't know enough to have an opinion. I hope it develops into something, but right now it seems too early to tell.
First time I have heard that one. I always though Lyme's was a complicated infection with three different disease states because of its various life cycle forms. If autoimmune in nature, what antibodies are being produced that attack endogenous tissue?
http://www.ncbi.nlm.nih.gov/pubmed/21281805
CD14 signaling reciprocally controls collagen deposition and turnover to regulate the development of lyme arthritis.
Abstract

CD14 is a glycosylphosphatidylinositol-anchored protein expressed primarily on myeloid cells (eg, neutrophils, macrophages, and dendritic cells). CD14(-/-) mice infected with Borrelia burgdorferi, the causative agent of Lyme disease, produce more proinflammatory cytokines and present with greater disease and bacterial burden in infected tissues. Recently, we uncovered a novel mechanism whereby CD14(-/-) macrophages mount a hyperinflammatory response, resulting from their inability to be tolerized by B. burgdorferi. Paradoxically, CD14 deficiency is associated with greater bacterial burden despite the presence of highly activated neutrophils and macrophages and elevated levels of cytokines with potent antimicrobial activities. Killing and clearance of Borrelia, especially in the joints, depend on the recruitment of neutrophils. Neutrophils can migrate in response to chemotactic gradients established through the action of gelatinases (eg, matrix metalloproteinase 9), which degrade collagen components of the extracellular matrix to generate tripeptide fragments of proline-glycine-proline. Using a mouse model of Lyme arthritis, we demonstrate that CD14 deficiency leads to decreased activation of matrix metalloproteinase 9, reduced degradation of collagen, and diminished recruitment of neutrophils. This reduction in neutrophil numbers is associated with greater numbers of Borrelia in infected tissues. Variation in the efficiency of neutrophil-mediated clearance of B. burgdorferi may underlie differences in the severity of Lyme arthritis observed in the patient population and suggests avenues for development of adjunctive therapy designed to augment host immunity.

http://onlinelibrary.wiley.com/doi/10.1111/j.1469-0691.2004.00895.x/pdf
Lyme borreliosis: from infection to autoimmunity
Lyme borreliosis in humans is an inflammatory disease affecting multiple organ systems, including the
nervous system, cardiovascular system, joints and muscles. The causative agent, the spirochaete Borrelia
burgdorferi, is transmitted to the host by a tick bite. The pathogenesis of the disease in its early stages is
associated largely with the presence of viable bacteria at the site of inflammation, whereas in the later
stages of disease, autoimmune features seem to contribute significantly. In addition, it has been
suggested that chronic persistence of B. burgdorferi in affected tissues is of pathogenic relevance. Longterm exposure of the host immune system to spirochaetes and⁄or borrelial compounds may induce
chronic autoimmune disease. The study of bacterium–host interactions has revealed a variety of
proinflammatory and also immunomodulatory–immunosuppressive features caused by the pathogen.
Therapeutic strategies using antibiotics are generally successful, but chronic disease may require
immunosuppressive treatment. Effective and safe vaccines using recombinant outer surface protein A
have been developed, but have not been propagated because of fears that autoimmunity might be
induced. Nevertheless, new insights into the modes of transmission of B. burgdorferi to the warmblooded host have been generated by studying the action of these vaccines.

http://www.medpagetoday.com/Rheumatology/Arthritis/36694
Refractory Lyme Arthritis May Be Autoimmune
The majority of patients with Lyme disease, even those with the late development of arthritis, recover with appropriate antibiotic treatment to eliminate the causative spirochete Borrelia burgdorferi.
But a subset of patients continues to have symptoms of arthritis long after treatment, and the management of these patients has remained controversial, wit
h many patient groups demanding long-term antibiotics.
Steere and colleagues have previously suggested that this persistence reflects infection-induced autoimmunity rather than ongoing infection.
The concept that autoimmunity is involved is supported by the observation that certain genetic HLA-DR alleles are common in patients with resistant Lyme disease.
These HLA molecules are capable of presenting autoantigens to T cells, which is thought to be an important event in autoimmunity.
To explore this autoimmune hypothesis, Steere and colleagues first performed a proteomic exploration to identify possible antigens.
Odd since autoimmune disease are treated with immunosuppressants in most cases
This is from Buhner's book about how late-stage/chronic Lyme can cause an overactive Th1 immune response.
index.php

Fair enough. Then if you think it is Lyme's why not see an LLMD and get started? Good luck and God bless!
I'm going to try Buhner's protocol first. If that doesn't work I'll look into antibiotics. I know your opinion about herbs, but I'd like to at least try before antibiotics. Recently, I've heard from a few people who've had success with antibiotics so I am more willing to do that now.
 

dbkita

Senior Member
Messages
655
Th1 elevated response does not necessarily mean a true autoimmune antibody response. Sepsis has severe elevated Th1 but you would never treat a person with sepsis with glucocorticoids. But I will grant that a chronic arthriris component is autoimmune in nature but that is very different than thinking Lyme' itself is autoimmune. It is a multifactorial infection. The autoimmune component is the remnant post treatment that never goes away. Also it is true most autoimmune diseases are Th1 elevated.

Interferon gamma is an amazing guy. IT is the one that drives 1, 25 calcitriol. In the past inteferon gamma was thought to be only pro inflammatory. But recent research suggests it is pro and anti and very important as a regulatory factor.

Before you try anything do you have a good LLMD? That seems essential.
 

Lotus97

Senior Member
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2,041
Location
United States
I also think Lotus wasn't trying to say she didn't care in the literal sense, I took it as she didn't think it mattered whether someone had another chronic problem or CFS, that we're in the same boat. I learned a while back that the way I phrased some things rubbed people the wrong way when I really didn't mean it harshly or critically. Internet conversations really lack some important parts of communcation.
Yeah. That's what I meant. When I typed "I don't care..." it made perfect sense to me, but I realize now it could be misconstrued.
I agree with you dbkita, it seems that many roads lead to Rome but chasing down that one bug like Lyme or XMRV or whatever hasn't been very helpful.
I don't know enough to have an opinion on this. That's part of the reason why I was curious what dbkita thought since he understands this stuff a lot better than I do. I had heard of XMRV, but didn't know what it was. I guess it's good I didn't waste my time learning about it.:p
 

dbkita

Senior Member
Messages
655
I do think though Lotus if you are seriously considering Lyme's and you have said some things before that has suggested a possible link (right?) ... then you may want to get with a LLMD who can really evaluate you for it. You might even need a second opinion until you find an LLMD you are comfortable with. The heavy handed, "everything is Herx, deal with it" is a load of **BLEEP** imho.

Also while arthritis is consequence for advanced stage Lyme's you really need to focus on it as an infection and fight it like crazy in all of its three life cycle form IF it really is the problem. I have a really good friend who saw a top LLMD in the Bay Area (can't remember doctor's name, but he has six month waiting list to give you an idea). He correctly saw she did NOT have Lyme's but had ehrlichia and babesia and aggressively went after them. Helped her a lot but it took a long time. On the other hand I went to several doctors who all pushed Lyme's my way despite all negative lab tests and lack of neurological symptoms. So it is a tough thing if you don't get the right doctor.

This is all just my opinion of course and I wish you the best whichever road you take.

P.S. I apologize btw for misconstruing your earlier comment. I literally re-read that comment like 10 times and kept coming back to the same what I erroneously thought was inescapable conclusion. Internet communication is much harder in that respect than a phone call or open verbal dialog. Mea culpa.
 

Lotus97

Senior Member
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2,041
Location
United States
I have a really good friend who saw a top LLMD in the Bay Area (can't remember doctor's name, but he has six month waiting list to give you an idea). He correctly saw she did NOT have Lyme's but had ehrlichia and babesia and aggressively went after them. Helped her a lot but it took a long time. On the other hand I went to several doctors who all pushed Lyme's my way despite all negative lab tests and lack of neurological symptoms. So it is a tough thing if you don't get the right doctor.
I didn't realize you could have a coinfection, but not borrelia. I guess I should look into getting tested. It's just that the tests for Lyme itself are supposed to be inaccurate. The newer ones are supposed to be more accurate, but they're still not 100% What symptoms are you referring to in regards of "neurological"? Actually, I think I found a list
(I included the last half just because I have a feeling you were thinking the same thing;))
Neurological symptoms associated with Lyme disease are all over the map. They do include tremors, fasciculations, weakness, myoclonus, Parkinsonian features, MS features, ALS features, vertigo, dizziness, alterations in hearing- vision- sense of smell or taste, neurologically mediated stiffness, sleep disorders including sleep apnea, loss of balance, all manner of speech disturbances and psychiatric disorders as listed elsewhere, stiff neck of the meningitis variety, neurologically mediated changes in bowel and bladder function, pinched nerve syndromes, neurologically mediated pain syndromes of all sorts, trouble swallowing mediated by changes in the brain, stroke like symptoms, a wide variety of neuropathic symptoms not listed here, changes in heat and cold perception, HEADACHES, exacerbations of preexisting migraine or tension headache, ADD syndromes, personality changes, neuromuscular syndromes causing muscle atrophy and weakness--AND these are just a few of the symptoms that come to mind as I sit at my desk on my lunch break. My point is that any one symptoms can be taken out of context. There is a gestalt in diagnosing Lyme disease. Patients have multiple and varied symptoms which come together a whole.

Perhaps sometimes I write Blogs to encourage my readers to think- and to some extent, I am sharing my thoughts, as I think out loud. I hope that readers will understand my comment in this light.

Neck pain is extremely common in Lyme patients. AND it does suggest co-infection with Babesia. I have a general medical practice. One half the patients I see do not have Lyme disease. The vast majority of patients who complain of neck pain as their chief complaint do not have Lyme disease. Please understand this distinction.

If all horses are brown and you are brown it doesn't make you a horse.
This sound silly, but I think it was this sort of logic that brought the above described patients to my office for a consultation.
P.S. I apologize btw for misconstruing your earlier comment. I literally re-read that comment like 10 times and kept coming back to the same what I erroneously thought was inescapable conclusion. Internet communication is much harder in that respect than a phone call or open verbal dialog. Mea culpa.
I can understand why you would think that. I wasn't sure how to say it because I also didn't want to sound condescending like "I give you permission to use these forums even though you don't have CFS/ME". We don't even know what it is exactly. I don't even know if Lyme is included in CFS/ME. I suppose I shouldn't be too hasty assuming Lyme is my problem either, but I think having a recurring rash where I was bitten seems more accurate than some of the tests. Both times it happened it occurred within a month or two of seeing a chiropractor. The Lyme bacteria like to hang out in the spinal fluid so I think the chiropractic adjustments might have reactivated my illness. I had relapses after each time the rash occurred (2-3 years apart). Of course it could all be a coincidence. I also had amalgams put in 6-12 months before each of those relapses. Someone told me that there isn't an accurate test to access mercury toxicity and the only way is to take an ELISA test to determine mercury sensitivity. There don't seem to be any easy answers with this illness.
 

greenshots

Senior Member
Messages
399
Location
California
Lotus, I think you are way in over your head here and shouldn't work up anything until you've done more research and have the information to back your intuitions up. When I started out, I did the same thing youre doing and wasted alotta time chasing after stuff I wish I hadn't. Everyone is in a hurry to get better so it makes sense but you don't want to waste all your money going down the wrong path. I can't say what your path will be but it seems to me that you came to the methylation forum for a reason. Take some time to weed thru it all and make some littler changes here and there until you find what you think is right.
 

Lotus97

Senior Member
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United States
Lotus, I think you are way in over your head here and shouldn't work up anything until you've done more research and have the information to back your intuitions up. When I started out, I did the same thing youre doing and wasted alotta time chasing after stuff I wish I hadn't. Everyone is in a hurry to get better so it makes sense but you don't want to waste all your money going down the wrong path. I can't say what your path will be but it seems to me that you came to the methylation forum for a reason. Take some time to weed thru it all and make some littler changes here and there until you find what you think is right.
I did make that mistake a few years ago and spent a lot of money with my previous doctor. My doctor now is covered by my insurance and so are the tests she runs and the prescriptions (provided they're generic) which is why I'm hesitant to go to a new doctor. The thing is, I was making a recovery and got to the point where I was working out at the gym, but then I had a severe relapse. I haven't left the house in the past 6 months except to go to doctor appointments. So I do need to address my underlying illness. I think dbkita is right that I shouldn't assume that Lyme is what's wrong with me until I know for sure, but that's easier said than done. I've been sick over 15 years so I'm not exactly "starting out", but that doesn't mean I can't still make more mistakes.:rolleyes: I do believe methylation is an effective treatment which is why I've dedicated so much of my time learning about it (though it does seem that there's so much about it I still don't know), but I also believe that isn't enough if the underlying illness isn't addressed.
 

greenshots

Senior Member
Messages
399
Location
California
Since methylation is the genetic underpinning for body chemistry, what are you referring to as the root cause? Infections, toxic waste, and metals are mostly the downfall of vulnerable genes, aka, methylation and of course our enormous level of environmental poisoning today. There are probably other genes we haven't discovered but methylation helps to turn on and turn off many genes. To me, this is the root cause and once you cover that, you go after remaining bugs that haven't responded or metals and other stuff.
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Since methylation is the genetic underpinning for body chemistry, what are you referring to as the root cause? Infections, toxic waste, and metals are mostly the downfall of vulnerable genes, aka, methylation and of course our enormous level of environmental poisoning today. There are probably other genes we haven't discovered but methylation helps to turn on and turn off many genes. To me, this is the root cause and once you cover that, you go after remaining bugs that haven't responded or metals and other stuff.
That's an interesting spin on the whole Nature vs. Nurture debate. You describe an incredibly complex system with an innumerable amount of variables. I do hope we learn more about SNPs (since I already ordered the test), but I think dbkita's response to Freddd's question earlier in this thread makes a lot of good points. Rich wrote a really good article which goes over all the factors in creating a block in the methylation cycle which does include genes, but also environmental stressors.
http://phoenixrising.me/research-2/...etion-theory-of-mecfs-by-rich-von-konynenburg
I recommend anyone following this thread to read the article. It explains things in very simple language and puts things very succinctly. I showed it to my dad and he understands my illness better now.

Skyline also posted this diagram (I'm not sure if he made it himself)
http://forums.phoenixrising.me/index.php?threads/skylines-journal-progress-experiments.20914/page-3
ME-CFS-treatment-strategy.png
 

greenshots

Senior Member
Messages
399
Location
California
I'm familiar with Rich's stuff and the diagram above but didn't see what you felt the root cause was? If bacteria or virus is the root cause, do these advocates feel everything else falls apart from there? That methylation, mitochondrial dysfunction, and immune problems will fall in line if you treat the bug? I'm not challenging you, just trying to see what your thinking is.

For example, I learned along the way that methylation played such a key role since more people would probably have problems if it were simply a matter of vaccines, Lyme, herpes, or whatever. As my doc discussed it, you have people who appear to do just fine after a series of shots, even with a bad cold, or some who lived by Chernobyl (sp?) and seemed ok but eventually, toxic accumulation is going to catch up. Why do some get super sick right away when others might have dementia from the same exposure, 30 years later? My sense is that our genetic combo's and level of exposure have alott to do with this result.
 

Lotus97

Senior Member
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2,041
Location
United States
I'm familiar with Rich's stuff and the diagram above but didn't see what you felt the root cause was? If bacteria or virus is the root cause, do these advocates feel everything else falls apart from there? That methylation, mitochondrial dysfunction, and immune problems will fall in line if you treat the bug? I'm not challenging you, just trying to see what your thinking is.

For example, I learned along the way that methylation played such a key role since more people would probably have problems if it were simply a matter of vaccines, Lyme, herpes, or whatever. As my doc discussed it, you have people who appear to do just fine after a series of shots, even with a bad cold, or some who lived by Chernobyl (sp?) and seemed ok but eventually, toxic accumulation is going to catch up. Why do some get super sick right away when others might have dementia from the same exposure, 30 years later? My sense is that our genetic combo's and level of exposure have alott to do with this result.
My point was what I said earlier that "this is a complex system with innumerable variables". It's very difficult to untangle everything. Yes, a lot of people have improved from methylation and a lot of people have improved by treating viral or bacterial infections and many have success supporting the Krebs cycle and taking ATP/mito supplements and many need to do various detoxification for mold/metal/chemical toxicity. I'm relatively new to all of this so I don't really have an opinion other than it's complicated. I'm amazed at the number and variety of tests some of the people here are getting. Every other day I hear about a new kind of test that measures certain functions. Yes, I've been sick for over 15 years, but the research I've done in the past has been several layers removed. Since I've joined Phoenix Rising I feel sort of like I'm at the epicenter (or at least much closer than I was in the past) of...well, I'm not sure what exactly. But people like Rich and many others have all been doing research and collaborating and sharing ideas. There's over 5000 posts just on GcMAF. Someone started a thread the other day about impaired function of natural killer cells in people with ME/CFS and was questioning whether this was an actual occurrence or not and then I remembered a thread Rich started last year about how NK cells and CD8 cytoxic T lymphocytes were low in perforin (and how it could be due to glutathione depletion).
http://forums.phoenixrising.me/inde...lls-perforin-and-glutathione-depletion.17603/
In the thread the he also posted links to two recent studies done that had concluded that people with CFS/ME did have impaired NK cell function. And so I posted that information in the new thread. Where's this all going? I have no idea. I'm doing my part to contribute, but I don't understand this stuff on a technical level like some of the people here. I'll try to make sure that the information gets to others who can interpret and analyze it.

I'll just conclude with something Rich said to you last year. You may or may not remember it. I'm posting it partially to illustrate the points I made in this post, but also for anyone else following this thread who wants to hear Rich's assessment of where things stood (in his mind anyway) as of mid 2012 in terms of CFS/ME.
Hi, Angela.

I appreciate the high opinion you have expressed about my abilities. I have to be honest with you, though, and admit that there is a whole lot that I don't know about many of the topics that are discussed on these forums. One area that I don't know a lot about is the details of translating the genomic polymorphisms, and interpreting what all of them mean. While it's true that I had something to do with getting your doc interested in these things, I think she is way ahead of me now in her understanding of how to apply them, and I think you are very fortunate to be seeing her. I do think that there is a lot of potential in studying the genomics, and I'm glad that others here are doing so, too.

I also want to say that I gain a great deal by participating in these forums and the other ME/CFS internet groups as well. A lot of what I have been able to learn has come from people here and in the other groups over the years. Some of it has come from papers or articles people have posted, or from their own thoughts, and some has come from studying in an effort to answer questions raised by people.

I realize that not everyone in these forums and groups has a scientific or biomedical background, but personal experience of people who actually have the disorder is also very helpful to me, in keeping my research relevant to the real world of those who have ME/CFS. After all, it's considered a syndrome, which is composed of symptoms, and who has the symptoms? I don't, and many of the clinicians and other researchers don't, either. I prefer to get information about them first-hand.

Like everyone else, one of my big limits is time. I would like to get a grasp on all the relevant topics, but I have to choose my battles and try to be strategic, continuing to focus on the goal of completely cracking ME/CFS. At this point, in my own mind at least (and I know that there are many in the ME/CFS community who might not agree) I believe that I understand the core of the pathophysiology of ME/CFS. The main parts that I think I don't have a good grip on are the etiologies, i.e. the root causes, and also the things that accumulate because of dysfunction of the immune and detox systems after the onset of the illness, and how these parts fit together with the part I think I understand. These are the areas I think I most need to focus on now, so I'm planning to try to get more up to speed on the immune system and the infectious diseases we see in PWMEs, as well as the toxins and detox system.

The work with GcMAF is very promising. The Rituximab results are intriguing. There is more detailed analysis of cytokines now. There is better testing for Lyme disease. The gut microbiome research has become active. The work on biotoxins has become pretty detailed and advanced. I would like to be able to pull all of this together. I think that understanding these sorts of topics is what we need to bring more people to complete recovery, which we are still not able to do today.

Thanks again for your confidence in me!

Best regards,

Rich
 

greenshots

Senior Member
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I remember his post. We also had several private chats regarding some questions I had and I I think you may be confusing promising treatments vs. root issues. There might be alotta promising stuff on the horizon and some people might get better with different treatments but unless you deal with core weaknesses, your probably going to have some problems later. In other words, You might figure out your Lyme only to suffer from MS or dementia or something else in your 50's or 60's. I don't think methylation is the only genetic problem, just a key part of the genetic root cause. But one thing I'm pretty sure of is that if methylation is really messed up, you can use all kinds of bandaids now but your still gonna pay later.
 

Lotus97

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Some people say that pretty soon we'll be able to extend the lifespan of humans beyond 150 years. I'm not holding my breath. I'm sorry if that seems like a strawman argument, but it sort of sounds like the path you're going down. I agree with Rich that genomics seems "promising", but right now people in the SNP forums are posting their "detox results" and no one seems to know how to interpret them or what to do about it.
 

greenshots

Senior Member
Messages
399
Location
California
I know, I feel bad for them since I got lucky. Thanks to Rich, I found a doc who did know what to do with these results and now I have three normal kids (2/3 were autistic) and I'm no longer bedridden with ME. Its true that it wasn't an overnight sort of thing. I had to hang in there for almost two years, even when I couldn't stand waiting and feeling so bad. But I did get well and I watched so many in my old biomed group get well too. Its possible, we just need more docs willing to take it on. But since mine had to quit a profitable career in mainstream to learn it all, I don't hold much hope of that either.
 

Lotus97

Senior Member
Messages
2,041
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United States
It's hard enough just finding a doctor that knows how to treat ME/CFS. My current doctor is the best one I've had yet, but she still is sorely lacking in many areas. The one positive thing I can say about her is that she seems to genuinely care whether or not I get better.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Interferon gamma is an amazing guy. IT is the one that drives 1, 25 calcitriol. In the past inteferon gamma was thought to be only pro inflammatory. But recent research suggests it is pro and anti and very important as a regulatory factor.

@dbkita, Can you please help me find out more about interferon gamma and 1,25 calcitriol?

Do you have any references you could share?

Thank you!