"This is our most desperate hour. Help me *Obi Wan Kenobi. You're my only hope!"
*Substitute Dr Vincent
*Substitute Dr Vincent
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Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme
- Thread starter Lemnia
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I can see there being a good case for mast cell activation syndrome (MCAS) playing a role in ME/CFS in some patients.
Though isn't the problem with MCAS the great difficulty in diagnosis? MCAS can produce myriad symptoms in numerous organs and areas of the body, and each patient presents with a different manifestation.
So with this difficulty in diagnosis, wouldn't it make it harder to research any connection between MCAS and ME/CFS. However, I did find two papers on MCAS and ME/CFS:
Chronic fatigue syndrome, mast cells, and tricyclic antidepressants
Amitriptyline and prochlorperazine inhibit pro-inflammatory mediator release from human mast cells– Possible relevance to chronic fatigue syndrome
Note though that MCAS appears to be common: 17% of the general population have MCAS, according to this German study. So if we are going to conclude that MCAS is more common in ME/CFS, the percentage of ME/CFS patients with MCAS would need to be significantly higher than 17%.
Nevertheless, even if MCAS was not more prevalent in ME/CFS, I guess it could well be that once you develop ME/CFS, any MCAS you may have might make your ME/CFS worse.
If MCAS were playing a role in ME/CFS, it might perhaps help explain the following:
• MCAS could offer an explanation for some of the mysterious food and medication sensitivities that quite a few ME/CFS patients have — some of these sensitivities might simply be caused by substances triggering mast cell activation in MCAS patients.
• MCAS might also conceivably play a role in the sensitivity that many ME/CFS patients have with emotional stress/discord, since it is known that stress can trigger mast cell activation in MCAS patients.
• MCAS might help explain the anecdotal accounts of how some ME/CFS patients can occasionally achieve remission or major improvements from psychological therapies alone. Since we know that mast cells can be triggered by emotional / psychological stress in MCAS patients, an individual who has a habit of responding in a highly stressful manner to external stressors may be constantly triggering their mast cells. But once they re-educate themselves using psychological therapies so as not to respond so stressfully to stressors, perhaps that significantly reduces their overall mast cell activation, which in turn improves their ME/CFS condition.
• I have also speculated in the past that the reason why raw food diets have occasionally been reported to help ME/CFS might due to the fact that such diets are free of advanced glycation end-products (AGEs), which are known to trigger mast cells.
Though isn't the problem with MCAS the great difficulty in diagnosis? MCAS can produce myriad symptoms in numerous organs and areas of the body, and each patient presents with a different manifestation.
So with this difficulty in diagnosis, wouldn't it make it harder to research any connection between MCAS and ME/CFS. However, I did find two papers on MCAS and ME/CFS:
Chronic fatigue syndrome, mast cells, and tricyclic antidepressants
Amitriptyline and prochlorperazine inhibit pro-inflammatory mediator release from human mast cells– Possible relevance to chronic fatigue syndrome
Note though that MCAS appears to be common: 17% of the general population have MCAS, according to this German study. So if we are going to conclude that MCAS is more common in ME/CFS, the percentage of ME/CFS patients with MCAS would need to be significantly higher than 17%.
Nevertheless, even if MCAS was not more prevalent in ME/CFS, I guess it could well be that once you develop ME/CFS, any MCAS you may have might make your ME/CFS worse.
If MCAS were playing a role in ME/CFS, it might perhaps help explain the following:
• MCAS could offer an explanation for some of the mysterious food and medication sensitivities that quite a few ME/CFS patients have — some of these sensitivities might simply be caused by substances triggering mast cell activation in MCAS patients.
• MCAS might also conceivably play a role in the sensitivity that many ME/CFS patients have with emotional stress/discord, since it is known that stress can trigger mast cell activation in MCAS patients.
• MCAS might help explain the anecdotal accounts of how some ME/CFS patients can occasionally achieve remission or major improvements from psychological therapies alone. Since we know that mast cells can be triggered by emotional / psychological stress in MCAS patients, an individual who has a habit of responding in a highly stressful manner to external stressors may be constantly triggering their mast cells. But once they re-educate themselves using psychological therapies so as not to respond so stressfully to stressors, perhaps that significantly reduces their overall mast cell activation, which in turn improves their ME/CFS condition.
• I have also speculated in the past that the reason why raw food diets have occasionally been reported to help ME/CFS might due to the fact that such diets are free of advanced glycation end-products (AGEs), which are known to trigger mast cells.
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Food intolerances would mostly be noticed via symptoms. Elimination diets are used for that purpose, and IgG testing for reaction to specific foods, but there hasn't much research into either of those.
If you say "allergies" to a doctor (Hi @Jonathan Edwards !) when you're talking about intolerances and similar non-allergic reactions, they're going to be disagreeable
In my case, I have no food allergies, except for mangoes. But I have intolerances to wheat (gluten?), eggs, dairy, and cranberries. A normal food allergy test after I started having these intolerances turned up completely negative. IgG intolerance testing showed mild elevations in those categories. But my physical reaction is bad enough that my entire body visibly swells ("non-pitting soft tissue swelling"), which is rather uncomfortable, albeit useful for freaking out doctors.
If you say "allergies" to a doctor (Hi @Jonathan Edwards !) when you're talking about intolerances and similar non-allergic reactions, they're going to be disagreeable
In my case, I have no food allergies, except for mangoes. But I have intolerances to wheat (gluten?), eggs, dairy, and cranberries. A normal food allergy test after I started having these intolerances turned up completely negative. IgG intolerance testing showed mild elevations in those categories. But my physical reaction is bad enough that my entire body visibly swells ("non-pitting soft tissue swelling"), which is rather uncomfortable, albeit useful for freaking out doctors.
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Lisa Klimas at mastattack.org just posted a four part series of articles and references re: MCAS and a variety of topics in case it could be helpful or interesting to anyone.
@Hip there are ways to test for MCAS such as histamine and prostaglandin levels in the blood and urine (and tryptase for mastocytosis.) I actually think it is easier to get a definitive diagnosis for MCAS than ME/CFS although it doesn't necessarily make the treatment easier or the symptoms improve and like ME/CFS there are very few specialists throughout the US and world.
I know this thread is about LDI so hoping it will get back on track. I was just very surprised to hear a doctor state there was no connection between the two illnesses but I will get over it as I always do!
@Hip there are ways to test for MCAS such as histamine and prostaglandin levels in the blood and urine (and tryptase for mastocytosis.) I actually think it is easier to get a definitive diagnosis for MCAS than ME/CFS although it doesn't necessarily make the treatment easier or the symptoms improve and like ME/CFS there are very few specialists throughout the US and world.
I know this thread is about LDI so hoping it will get back on track. I was just very surprised to hear a doctor state there was no connection between the two illnesses but I will get over it as I always do!
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I do wonder if it is worth contributing to threads like this one when I could be getting going with the work on Freedom of Information requests I have promised to help with. But I would like to make a few last points:
1. My mind is completely open - I am simply asking for information. It appears that others have decided what the facts are in advance.
2. Mentioning Fluge and Mella made me smile - remember that the only reason I am on this forum is that I took F and M seriously when others did not and wrote in support of them to PLOS ONE.
3. An association between ME and allergy would mean a statistical one - what percentage of an unbiased sample of PWME have allergy. Individuals with both tell us nothing. There are individuals with allergy and no ME. We need to know numbers and I cannot find any. This is not dotting i's and crossing t's. It is just establishing basic information.
4. Allergy refers to responses including mast cell degranulation that are triggered by specific antibody- antigen interactions. Mast cell activation without antibody is not allergy. So LDI is irrelevant to mast cell activation that does not involve antibody (IgE) as far as I can see. As far as I can see MCAS is a term intended for people who do not actually have evidence of allergy, although definition seems to be uncertain. I don't think we are interested in a link between MCAS and ME in the context of LDI (as Gingergrrl's doctor seems to agree).
5. I did not know that Ramsey included postural tachycardia and that is interesting, but I am unclear whether it has held up.
The real problem for me is when people use the words of science and string them together in a way that does not make sense in terms of the scientific meaning. I worry about upsetting people who may find such explanations comforting - I apologise sincerely if I do. But if this forum is to be useful to PWME in general we surely need to point out where things make no sense or information is missing. I prefer magical theories to pseudoscience. I am currently in the process of trying to persuade the world (even the Daily Telegraph maybe) that PWME are not people with funny ideas but a highly intelligent group who as a community know their science better than certain doctors making unjustified claims about treatments who claim to be harassed. It can be hard work but I think we will get there because in the main it is true!!
1. My mind is completely open - I am simply asking for information. It appears that others have decided what the facts are in advance.
2. Mentioning Fluge and Mella made me smile - remember that the only reason I am on this forum is that I took F and M seriously when others did not and wrote in support of them to PLOS ONE.
3. An association between ME and allergy would mean a statistical one - what percentage of an unbiased sample of PWME have allergy. Individuals with both tell us nothing. There are individuals with allergy and no ME. We need to know numbers and I cannot find any. This is not dotting i's and crossing t's. It is just establishing basic information.
4. Allergy refers to responses including mast cell degranulation that are triggered by specific antibody- antigen interactions. Mast cell activation without antibody is not allergy. So LDI is irrelevant to mast cell activation that does not involve antibody (IgE) as far as I can see. As far as I can see MCAS is a term intended for people who do not actually have evidence of allergy, although definition seems to be uncertain. I don't think we are interested in a link between MCAS and ME in the context of LDI (as Gingergrrl's doctor seems to agree).
5. I did not know that Ramsey included postural tachycardia and that is interesting, but I am unclear whether it has held up.
The real problem for me is when people use the words of science and string them together in a way that does not make sense in terms of the scientific meaning. I worry about upsetting people who may find such explanations comforting - I apologise sincerely if I do. But if this forum is to be useful to PWME in general we surely need to point out where things make no sense or information is missing. I prefer magical theories to pseudoscience. I am currently in the process of trying to persuade the world (even the Daily Telegraph maybe) that PWME are not people with funny ideas but a highly intelligent group who as a community know their science better than certain doctors making unjustified claims about treatments who claim to be harassed. It can be hard work but I think we will get there because in the main it is true!!
Dear Minkeygirl, they were excellent GI doctors who helped enormously with my daughter's GI bleeds when she was in the hospital.they were not CFS doctors. I try all sorts of stuff, gracious, I'd be a laughing stock if I outlined what we tried. I would really like to hear from some folks who have been doing this LDI for several months. No, mainstream doctors can't help with ME. It's a devastating illness,so extreme can it be, that it is shocking there are still physicians who think it's " psychosocial". My daughter has a severe case, and I'm desperate for help.
Can we get this back to discussing LDI VS what is an allergy and what is an tolerance?
The good thing about PR Is there are and always have been plenty of informed and intelligent people with ME/CFS to discuss the pros and cons, the science and maybe not so science of our illness. They don't go around patting themselves on the back when they have new theories or suggest they have better things to do when challenged
Their views are as valid as anyone's and meant to inform, not comfort. Not to pat us on the head and say there there I hope you feel better.
People who are sick and have a medical and science background are for more credible to me.
ME ain't for sissies. It takes guts and courage to survive with this disease. We want and deserve to try anything available. Right now, here on this thread it's LDI. I can't remember the last time anything new was available to us that took a new approach.
Let's get this thead back to what it was. A discussion about LDI/LDA.
Their views are as valid as anyone's and meant to inform, not comfort. Not to pat us on the head and say there there I hope you feel better.
People who are sick and have a medical and science background are for more credible to me.
ME ain't for sissies. It takes guts and courage to survive with this disease. We want and deserve to try anything available. Right now, here on this thread it's LDI. I can't remember the last time anything new was available to us that took a new approach.
Let's get this thead back to what it was. A discussion about LDI/LDA.
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@Mary @minkeygirl I second that emotion Mainstream docs have done and for the most part do nothing. The only help I have gotten have been from experimental off the beaten path treatments and docs who have a certain kind of brilliance, courage, compassion and curiosity to stand alone and forge ahead.
But thats pretty much true of the history in all areas of the human condition be it politics, medicine, science, etc……
No Fear
But thats pretty much true of the history in all areas of the human condition be it politics, medicine, science, etc……
No Fear
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We are all sick here and some of us are taking care of children and pets and just trying to survive the day. We are trying to contribute on PR to share information to help others (at least I am.) If you feel the need to tell us that you have better things to do than respond to a discussion it is a little insulting at least to me.
I just provided a link to Lisa Klimas (a scientist) website "mast attack.org" in which she lists four pages of scientifically published articles on mast cell disease and mastocytosis and how it relates to all different topics. If there were studies funded on the connection between MCAS and ME/CFS, I would list them. We all know these studies have not occurred yet.
I did not mention F & M so have no info on this one.
The percentage of PWME with allergies, MCAS, intolerances to food & meds, etc is quite high. I cannot tell you how high b/c the studies are sadly not there.
In MCAS, foods containing or liberating histamine from the mast cells triggers a reaction. In many people with MCAS these reactions can be triggered by medications, contrast dyes, food dyes, strong smells, weather changes especially low pressure weather, friction on skin, stress, etc. For me the #1 trigger which sent me to the hospital for a week is food that I ingest. I have no real interest or any agenda in LDI other than being open-minded to hear if it will help others (as I am with all treatments.) But statements that there is no connections between MCAS, allergies and ME/CFS shocked me as I said.
This shocks me as well. Postural tachycardia and dysautonomia is a key component of ME/CFS from Ramsey to the present day. If tachycardia, dysautonomia, MCAS/allergies, are not part of ME/CFS than I have a different illness.
I am not sure if this is directed at me or others but I am the first to acknowledge that I lack a strong science background. Not everyone who became ill had a science background and this forum used to be a safe place to share anecdotal information on what has worked or not worked for real people who have tried these treatments. And yes, there is some level of comfort in doing that. You can refer to us as people with "funny ideas" but many doctors and researchers experiments had funny ideas until they solved the equation or found the cure. I hope you would not refer to Ron Davis or those willing to test ALL potential ideas in that category.
I just provided a link to Lisa Klimas (a scientist) website "mast attack.org" in which she lists four pages of scientifically published articles on mast cell disease and mastocytosis and how it relates to all different topics. If there were studies funded on the connection between MCAS and ME/CFS, I would list them. We all know these studies have not occurred yet.
I did not mention F & M so have no info on this one.
The percentage of PWME with allergies, MCAS, intolerances to food & meds, etc is quite high. I cannot tell you how high b/c the studies are sadly not there.
In MCAS, foods containing or liberating histamine from the mast cells triggers a reaction. In many people with MCAS these reactions can be triggered by medications, contrast dyes, food dyes, strong smells, weather changes especially low pressure weather, friction on skin, stress, etc. For me the #1 trigger which sent me to the hospital for a week is food that I ingest. I have no real interest or any agenda in LDI other than being open-minded to hear if it will help others (as I am with all treatments.) But statements that there is no connections between MCAS, allergies and ME/CFS shocked me as I said.
This shocks me as well. Postural tachycardia and dysautonomia is a key component of ME/CFS from Ramsey to the present day. If tachycardia, dysautonomia, MCAS/allergies, are not part of ME/CFS than I have a different illness.
I am not sure if this is directed at me or others but I am the first to acknowledge that I lack a strong science background. Not everyone who became ill had a science background and this forum used to be a safe place to share anecdotal information on what has worked or not worked for real people who have tried these treatments. And yes, there is some level of comfort in doing that. You can refer to us as people with "funny ideas" but many doctors and researchers experiments had funny ideas until they solved the equation or found the cure. I hope you would not refer to Ron Davis or those willing to test ALL potential ideas in that category.
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This shocks me too as I have had an email from dysautonomia international stating their researchers are very much aware of the mast cell connection to many forms of dysautonomia, pots being one.
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Yes and the trio of illnesses that are tied together are POTS, MCAS, and EDS. I do not have the EDS part but it is well established by dysautonomia international and the autonomic specialists who are familiar with the greater picture.
Many years ago my wife went through LDI. The doctor was very convincing, very professional, and very thorough. The "testing" alone took nearly a week in his office as I recall. There is no doubt that you can provoke some interesting reactions using low dose antigens, but whether it treats anything is another question.
My wife's experience was that the dose that the doctor determined was a constantly moving target...and over a period of years it was "adjusted" endlessly, with little in the way of real progress. In the end, after thousands of miles of travel, scores of doctors visits, and many thousands of dollars I would say that the whole thing was absolutely worthless...even for her conventional allergies, never mind CFS.
That was our experience, so take it for what it's worth, but I surely couldn't recommend it to anyone. On the plus side, if someone is resolved to trying it, the only damage I think you'll suffer is to your time, energy, and wallet.
My wife's experience was that the dose that the doctor determined was a constantly moving target...and over a period of years it was "adjusted" endlessly, with little in the way of real progress. In the end, after thousands of miles of travel, scores of doctors visits, and many thousands of dollars I would say that the whole thing was absolutely worthless...even for her conventional allergies, never mind CFS.
That was our experience, so take it for what it's worth, but I surely couldn't recommend it to anyone. On the plus side, if someone is resolved to trying it, the only damage I think you'll suffer is to your time, energy, and wallet.
I cannot find any info on MCAS being associated with orthostatic hypotension or neurally mediated hypotension (two common orthostatic intolerances found in ME/CFS in addition to POTS).
I can only find a link between POTS and MCAS. And it is only the hyperadrenergic subtype of POTS (similar to low flow POTS) where MCAS is found, if I have understood this study correctly. About 20% of POTS patients are low flow, so I am guessing that means no more than 20% of POTS patients will have MCAS.
And in ME/CFS itself, one study found 27% of ME/CFS patients had POTS.
So that would mean that no more than 20% x 27% = around 5% of ME/CFS patients will have MCAS from a POTS origin.
I can only find a link between POTS and MCAS. And it is only the hyperadrenergic subtype of POTS (similar to low flow POTS) where MCAS is found, if I have understood this study correctly. About 20% of POTS patients are low flow, so I am guessing that means no more than 20% of POTS patients will have MCAS.
And in ME/CFS itself, one study found 27% of ME/CFS patients had POTS.
So that would mean that no more than 20% x 27% = around 5% of ME/CFS patients will have MCAS from a POTS origin.
I just came across this study and can´t find that it has been posted on PR before. I think it would fit in the earlier discussion about mast cell activation as the prevalence of Lyme disease seems to be higher in PWME .
Infect Immun. 1999 Mar; 67(3): 1107–1115.
PMCID: PMC96436
Borrelia burgdorferi Spirochetes Induce Mast Cell Activation and Cytokine Release
Jeffrey Talkington and Steven P. Nickell*
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/
Infect Immun. 1999 Mar; 67(3): 1107–1115.
PMCID: PMC96436
Borrelia burgdorferi Spirochetes Induce Mast Cell Activation and Cytokine Release
Jeffrey Talkington and Steven P. Nickell*
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/
This thread is so off topic. It's about LDI.
LDI, in its present form, has only been used for about 2 years, though of course it built on earlier forms of low dose immunotherapy.
I think that most of those in this thread are most interested in its application for Lyme and co-infections (see thread title), and for treating other pathogens that have had a low success rate with conventional approaches.
The plus for LDI (as it has been presented in this thread) is that there need be no travel, almost no "time and energy" involved and it is quite inexpensive compared to other roads we might have followed. The time and energy component is basically reading, watching interviews and perhaps interacting with others who are trying it. Administering the treatment takes about 30 seconds every few weeks.
I think that most of those in this thread are most interested in its application for Lyme and co-infections (see thread title), and for treating other pathogens that have had a low success rate with conventional approaches.
The plus for LDI (as it has been presented in this thread) is that there need be no travel, almost no "time and energy" involved and it is quite inexpensive compared to other roads we might have followed. The time and energy component is basically reading, watching interviews and perhaps interacting with others who are trying it. Administering the treatment takes about 30 seconds every few weeks.
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Agreed and I will bow out of this thread unless I have a question re: LDI which I do not at this time.