@Rrrr my appointment is next April. I just tested high IgM mycoplasma and cmv (plus s bunch more im sure) so it's good to hear of someone getting treated for something other than lymes.
Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme
- Thread starter Lemnia
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@justy someone on the Facebook group when asked about Mast Cells
Dr V told me last week he hates the MCAD dx, as it is allergy's he says. Told me LDA/I will help as it is treating the allergy, but must go low and slow.
Dr V told me last week he hates the MCAD dx, as it is allergy's he says. Told me LDA/I will help as it is treating the allergy, but must go low and slow.
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@minkeygirl or @justy Do you mean that he doesn't think MCAD/MCAS (or mastocytosis) is a real diagnosis and it is just equal to having regular allergies? Just want to make sure I am understanding correctly? I am not on FB so getting information from you guys on this one.
He thinks it is a pattern of extreme allergic reaction. He prefers descriptions of "what is happening" symptom-wise, over specific labels, which often don't fully indicate the root of the problems.
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But if someone tested very high for histamine, prostaglandins, tryptase, etc, and had a diagnosed mast cell disorder by a specialist (in allergy, immunology, pulmonology, etc) and could not tolerate any of the histamine containing or histamine liberating foods or meds and benefited from mast cell stabilizers or an MCAS protocol would he accept this as real? Am only curious (and don't need it to validate my own situation) but I know there is a lot of disbelief out there. MCAS is different than a true IgE mediated allergy like someone who is deathly ill to peanuts as an example.
Of course he would. He would just want to know what the deeper cause of this description of symptoms might be.
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Makes sense and in my case it would be the toxic mold exposure but I know that varies from person to person. Was just curious! Thanks for explaining.
@Sushi what I got from listening to his 10/31 audio, he is not locked in to conventional causes of a disease. He has also had some happy accidents which is how he found out MS patients respond to Lyme. Or was it the other way around?
Did I understand that correctly?
Did I understand that correctly?
No, he doesn't seem to be "locked into" the cause of any set of symptoms/disease, though he certainly pays attention to research on different conditions. He has had some "happy accidents" where patients didn't respond to treatment that would have been predicted by their symptom set/diagnosis, and he tried something different that their history indicated might be involved--and they did respond.
One of the things I like about him is that he doesn't give up. He seems to regard each patient as a challenge and keeps at it until they respond.
He has found that a percentage of patients diagnosed with MS responded significantly (meaning their symptoms improved markedly) with treatment for Lyme and co-infections.
One of the things I like about him is that he doesn't give up. He seems to regard each patient as a challenge and keeps at it until they respond.
He has found that a percentage of patients diagnosed with MS responded significantly (meaning their symptoms improved markedly) with treatment for Lyme and co-infections.
@Sushi. There was something he said in the interview. I can't remember it exactly but when others said "you're not practicing standard medicine" he said "I'm not, I'm better". That is what did it for me.
He is what all doctors should be like. Why go to med school for all those years to do nothing but referrals and write rx's?
He is what all doctors should be like. Why go to med school for all those years to do nothing but referrals and write rx's?
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Some physicians will extol anything they can sell. Physicians started off as shamans who claimed to know about disease and have healing powers but did not. That only really started to change in 1950-1970 and a lot of doctors are still shamans at heart. ME patients may have allergies, although I have not come across any convincing evidence that they do more than anyone else. And if you treated an allergy in someone with ME I would have thought you might help the allergy, but I cannot see why it should help the ME. I do not see the connection. The symptoms of ME are not like the symptoms of allergy.
@Rrrr - please keep us posted how you do!
@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.
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.
This is with Dr. Vincent, right? Is this the first available appointment he had?
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I was trying to restrain myself from responding but can't let this one go. So the fact that ME patients go on to develop mast cell disorders (often leading to anaphylaxis reactions), multiple chemical sensitivities, extreme food allergies, medication allergies to micro doses of things, and some have to live in the desert to avoid mold, biotoxins, etc, is not enough convincing evidence that allergies are related to ME?!!! I am rarely shocked by what I read on PR anymore, but these statements shocked me!
@Mary yes dr Vincent. When I made my appointment a week or so ago he was booking late April.
I decided not to go with his local protege. Some protégés are not following his protocol re dosing and i'd much rather do sublingual than under the skin injections.
I decided not to go with his local protege. Some protégés are not following his protocol re dosing and i'd much rather do sublingual than under the skin injections.
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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.
