Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

[Jonathan Edwards]

It seems to be known that POTS and mast cell activation syndrome may go together, and of course POTS is pretty well associated with ME. This isn't true IgE mediated allergy, to me it seems much much much worse than that.

Yes but psoriasis and arthritis go together and arthritis and autoantibodies go together but psoriasis and autoantibodies don't go together. The paper on mast cells and POTS makes no mention of fatigue. And a lot of people talk of ME being more associated with orthostatic intolerance of other sorts than POTS. I still don't see evidence for a link between allergy and ME.

 

[halcyon]

And a lot of people talk of ME being more associated with orthostatic intolerance of other sorts than POTS.

Depends on who you ask I guess. Orthostatic tachycardia was part of Ramsay's criteria for the disease.

MCAS wasn't even named until 2007. If there is any disease more poorly understood or studied than ME it would be MCAS.

 

[minkeygirl]

@Mary Someone on FB said Dr. Hirani in Culver City. No details.

 

[Gingergrrl]

Depends on who you ask I guess. Orthostatic tachycardia was part of Ramsay's criteria for the disease.

MCAS wasn't even named until 2007. If there is any disease more poorly understood or studied than ME it would be MCAS.

@halycon Like you, I thought the connection between ME/CFS, different types of dysautonomia, OI, POTS, MCAS, etc, was a well known fact. Am kind of surprised to learn that some view it differently but that is okay and I guess nothing should surprise me any more.

My ME/CFS specialist explained it to me once (the connection in his opinion of how my immune system shifted to the allergy/MCAS side) but I cannot find it right now even though I searched through my notes and do not want to misquote him.

I lack the science background to quote articles but hoping someone else can explain it here better than me. I thought dysautonomia and immune/allergic reactions were a core part of the illness.

 

[Mary]

@Mary Someone on FB said Dr. Hirani in Culver City. No details.

Thanks @minkeygirl - I'm thinking, if I was going to try it, I probably would go with Dr. Vincent - no travel time, which is huge for me (and most of us!), and the cost of the solution is reasonable. Most doctors I talked to were charging I think a couple of hundred dollars for each injection. so the office visit might have been cheaper, but the injection costs more than made up for it, and travel time for each visit, etc.

I'm trying a couple of other things rights now, so this is on the back burner for me at the moment, but am thinking of making an appointment since he's booked so far out, and when I get cured before then I can just cancel

Seriously, I am very curious to see how others do with this, paving the way for the rest of us --

 

[Gingergrrl]

I'm trying a couple of other things rights now, so this is on the back burner for me at the moment, but am thinking of making an appointment since he's booked so far out, and when I get cured before then I can just cancel

Seriously, I am very curious to see how others do with this, paving the way for the rest of us --

@Mary and @minkeygirl am hoping everyone who tries this keeps us posted! I am not trying it or making an appt yet b/c am trying some other treatments that I feel are helping and I am cautiously optimistic but keep this one on the back burner like Mary said.

 

[minkeygirl]

@Valentijn i know this isn't a simple question but can you explain dumbed down how I would know I had food intolerances?

 

[heapsreal]

Can you give me any references to the higher rate of mast cell disorders or allergies in PWME, Gingergrrl? I have never seen it mentioned at a research conference. If there is actually a link why is it not considered to be a biomarker? Is it actually a fact? This is what I find so frustrating. There seem to be all these facts but to be any use for research they need to be documented somewhere in a form that one can reasonably assess as reliable. I have never heard of anyone trying to tie in allergy with ME mechanisms and I find it hard to see how one would. Intolerances are easy to fit in but allergy is a very specific pathway.

Why do u always ask for references to what people say about cfsme when we know there is very little research into this disorder. We could use this argument to discount what anyone says about cfsme.

Most cfsers will say something is common by what they find from others on PR. Its not double blinded placebo study, peer reviewed, but that goes with most theories, symptoms, treatments etc for cfsme. Doesnt mean its wrong or doesnt exist.

But using it as an excuse is an easy way to discount something even though research hasnt disproved it and fits their own pet theory . An open mind is a must with an illness which has little research .

 

[minkeygirl]

. An open mind is a must with an illness which has little research .

An open mind is a must for any illness to continue find better and more effective treatments

I'm sure plenty of people thought Fluge and Mela were nuts using a cancer medication to treat ME/CFS. What if they were asked to site studies in order to pursue their interests?

They led the charge. Someone has to be the leader with new ways to treat us.

 

[Sushi]

With LDI, at this stage, "the proof will be in the pudding," so we'll find out, even though it means being guinea pigs.

 

[minkeygirl]

With LDI, at this stage, "the proof will be in the pudding," so we'll find out, even though it means being guinea pigs.

We're always guines pigs! This is probably easier on us than AV's. Won't destroy our livers.

 

[heapsreal]

An open mind is a must for any illness to continue find better and more effective treatments

I'm sure plenty of people thought Fluge and Mela were nuts using a cancer medication to treat ME/CFS. What if they were asked to site studies in order to pursue their interests?

They led the charge. Someone has to be the leader with new ways to treat us.

Exactly. I guess it can be easy to get tunnel vision and miss the big picture. Where the person with an open mind can have tunnel vision but can also zoom out for the big picture every so often to keep on track.

 

[minkeygirl]

@heapsreal I've found seeing docs who can't look beyond the scope of their limited area are worthless to me. Not just with CFS but with everything.

I don't get docs who are not curious. Who don't wonder why some things don't make sense instead of trying it to fit into their frame of reference

 

[Hip]

Most cfsers will say something is common by what they find from others on PR.

When it comes to allergies, though, ME/CFS patients and the general public alike often use that term loosely: many use "allergy" to mean any substance or food which triggers some symptoms, or exacerbates existing symptoms.

Now someone may feel worse on exposure to a substance, but that does not necessarily mean they have an allergy (it requires the mounting of an IgE antibody response to the allergen to be a real allergy).


Like many ME/CFS patients, I find I am sensitive to quite a few medications and supplements, and my IBS symptoms get worse with even small amounts of alcohol, spices or chloramine from my tap drinking water. However, I doubt that any allergy is involved in most of this.

In fact, I am not sure how you would medically classify the increased sensitivities to medications and supplements ME/CFS patients often have.

In the Canadian Consensus Criteria, they do mention both sensitivities and allergies:

SENSITIVITIES AND ALLERGY HISTORY: including new sensitivities and allergies and change in
status of preexisting ones

New sensitivities to food, medication and/or chemicals

Many patients are hypersensitive to medication so begin dosage at a lower level than recommended.

The CCC also mention that allergies and multiple chemical sensitivities (MCS) can appear as comorbid conditions in ME/CFS.

 

[perrier]

@perrier If people never tried things that sounded like they shouldn't work then we might as well just hang it up. Blanket statements to avoid things because they aren't yet understood makes no sense. Where would we be if someone didn't think about Ampligen or Rituximab. Lots of things aren't understood, that doesn't mean we should avoid them.

Dr. Vincent has a new approach which doesn't mean killing and attacking things. He wants to get to the source of the problem.

I would listen to the 10/31/15 YouTube video if you want to understand how it works. Hear it directly from Dr. Vincent. Don't be mislead by the Lyme heading. He address many things.

Here's one of many interview you can hear on Youtube.

Dear Minkeygirl, we have tried so many things, I'm embarrassed to say. A desperate mother grasps at any straw and is vulnerable to snake oil doctors for sure. I don't disagree with you. I have respect for Dr Edwards and wanted to hear more from him. My daughter is so sick that she can't do much for herself, and I don't know where to turn anymore. So many doctors told us they would help her, took our hard earned cash and really gave us supplements they own. Countless times this happened. May they all rot in hell! I hope they do. It's vile to take outlandish sums of money from the disabled, the utterly vulnerable. It's probably one if the ugliest things I've seen in this journey. And two mainstream doctors warned, saying: watch out. Lots of these guys are after cash. But I keep paying because I don't know what to do to help my suffering daughter.

 

[Gingergrrl]

Now someone may feel worse on exposure to a substance, but that does not necessarily mean they have an allergy (it requires the mounting of an IgE antibody response to the allergen to be a real allergy).

I agree that not everything is a true IgE allergy and this is not what I was responding to. But if someone has a reaction to a food, medication, food dye/artificial color, etc, and it causes mast cells to degranulate to the point of anaphylaxis and hospitalization, I don't think IgE vs. histamine matters in that moment! The number of people with ME/CFS whose immune systems go haywire leading to histamine/MCAS reactions is staggering and I agree with @heapsreal that we can't always site studies b/c the studies are not there.

 

[minkeygirl]

I've been sick for 20 years. I'm housebound, live on the poverty level and have no help.

LDI and Dr Vincent is the most interesting thing that is affordable and available to me now. Not In 5-10 years when I'm bedbound and unable to feed myself.

I prefer to surround myself with open minded, medically curious doctors who are willing to try various protocols. Docs who can't see past their own agenda don't interest me.

I can't and wont wait when Something is available now.

 

[minkeygirl]

@perrier and could the docs who warned you about scammers help you? Not one mainstream doc has helped me.

Everyone here is sick and wants help. Everyone spends money and Anyone can take your money. You decide who it is.

 

[heapsreal]

@Hip
I understand the difference between an allergy and a sensitivity but what causes such sensitivities when the obvious are equal such as sex, height , weight etc. Is it a different type of immunological response or neurological or a mixture of both, maybe something we dont even know??

 

[Mary]

With LDI, at this stage, "the proof will be in the pudding," so we'll find out, even though it means being guinea pigs.

You're so right - I've been a guinea pig too many times to count! It's the only way I've made any progress. And a few times it's paid off - and as @minkeygirl said above, not one mainstream doctor has helped me. We are for the most part on our own, the cavalry isn't coming, and Timmy is stuck in in the well (to mix a few metaphors!)