Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

justy

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If you can frame the question, I'll also ask it on the LDI Facebook page.
Thanks Sushi - I'm not sure the LDI group will necessarily have enough knowledge of MCAD's to be able to answer?
I guess the question would be something like:

'can LDI be used by people with Mastocytosis and Mast cell activation syndrome safely? by what mechanism is LDI different to EPD and LDA?, do any of the Drs or patients have experience of working with MCAD's?'
 

Gingergrrl

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@justy from my research thus far I agree with you that LDI is far too risky if you have severe MCAS like I do (but I am no expert so take this with a grain of salt.)
 

Sushi

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Thanks Sushi - I'm not sure the LDI group will necessarily have enough knowledge of MCAD's to be able to answer?
Here are the responses so far: https://www.facebook.com/groups/828673227222144/ But I don't think the link will work unless you are a member of the group.
  • My Dr. says yes LDA/I is safe for Mast Cell Disorders also Dr. V has said it is safe also. I am hoping that is the case as I am really looking like a Mast Cell Disorder myself. Just started the testing. Im doing my #6 foods and #4 Lyme next week. I am not seeing any postive reactions as yet other than cleared siniuses for a few days here and there after the shots. We are still trying to find my dose as I am sooo reactive. The LDA/I have not caused the severe reactions it is why I started this treatment.
  • It should be, as it inhibits degranulation, so I'd expect it to be actually very useful... AS for LDA/LDI/EPD, they are the same. The only difference is that LDA/I should not contain in theory "pathogens antigens" as per FDA prohibitions... What of course isn't true at all, so not sure how are they making it to use the bacteral antigens...
  • I forgot to add even the Mast Cell Dr. I seen was pleased I am doing LDA/I said it will help. { I was shocked he had even heard of it }
Dr. V. (Vincent) is the most knowledgeable doctor on this and @justy, the second comment is from a medical student you know.
 

justy

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Thanks Sushi, great to have some feedback and answers. might have a look into it a bit more as im not able to take abx I need to find a way to encourage my immune system to fight it itself - sounds like a tall order but im sure there must be a way.
 

Sushi

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The use of these terms is confusing as different practitioners are using them in a different manner. LDI seems to be a newer approach, using different methods of preparing the remedies and, I believe, using much lower doses.

There is a conference coming up in early October where both Drs. Vincent and Shrader are speaking and perhaps we will have some clarifications afterwards.
 

Rrrr

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Hi, Good to hear you are doing well. I did not feel comfortable staying with the London doctor, we left the £400. consult without confidence in him or the experience he has with this. I then contacted quite a lot of people on Ty Vincent's list of doctors he has trained and I found one in CT willing to treat me via Skype. My consult was on Friday last week and they are shipping me my first Lyme dose of 15c which should arrive next week! Lyme dose first and then the yeast at 15C. I am excited to be on my was to trying it. I will also ask about the Mycoplasma/Chlamydia pneumonia LDI as I tested positive for these. Keep me posted on how you all do and the best of luck to you!
Hi @Lemnia, where did you find the list of doctors who have been trained by Ty Vincent? Thx!
 
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What does @Jonathan Edwards think of this type of treatment?
In the context of ME this sounds like nonsense. Low dose antigen therapy has been used for allergies but I am not sure how effective it has proved to be. It is completely irrelevant to rheumatoid arthritis so any physician who claims it works for that sounds like someone to be avoided.
 
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Has anyone approached or is having treatment with Dr B in CT? She is on the Schrader list ( I nearly said Schindler) ! Good movie- she is also on Dr V list on his website. I would like to see if it's possible to have treatment in the UK. Dr V isn't treating overseas patients according to his receptionist.
 
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Has anyone approached or is having treatment with Dr B in CT? She is on the Schrader list ( I nearly said Schindler) ! Good movie- she is also on Dr V list on his website. I would like to see if it's possible to have treatment in the UK. Dr V isn't treating overseas patients according to his receptionist.
I consider the same Riverview - I am in EU. Hope she takes patients from here as I was also told that Dr. V doesn't take us in. Too bad. Do you know if she is the only one on the list that does skype (is she does that?) and will accept us?
 
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Hi. I am in the UK and am being treated LDI by Dr. B in the States. I have had my first dose shipped to me and took it approx 3 weeks ago. Dose was a mix of Lyme and Yeast at 15C. I felt pretty ill for about 4 days after (could have been my normal up and down of symptoms) but then had a run of about 6 days really a lot improved (6 good days in a row is great for me!). I had less pain and a little more energy.

I have been very ill indeed for 3 years, tried everything except antibiotics. I was about to start on antibiotics when I came across Ty Vincent and how he is pioneering this new treatment and felt I needed to go this route. Finally found Dr. B in CT who agreed to treat me. I'm their first patient to be treated oversees via Skype, so really I'm a sort of Guinea pig trial for them. But I'm grateful as was also informed Dr. Vincent is not treating outside of the US.

There is one other trained by Dr. Vincent (on his list) who is in the UK. I saw him and felt strongly for reasons I probably shouldn't post on here that he was not the right person to start this treatment with. Thus my search eventually found Dr. B. My 'booster' shot is on it's way to me and will arrive this week and I will take it when it arrives as I have slipped back to my normal level of illness. My next regular shot will be Oct 15th.

The most difficult part of LDI is finding each persons correct dose. If dose is too strong you flare. Too week and no change. It's hitting the mark and getting the right amount that often takes time and patience. However, when you as ill as I have been and you see the remarkable results that are coming out of this treatment, then time and patience is a small price to pay for what may be a way out of this very dark tunnel of pain and disability.
 
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@Lemina Hello. It's good to hear from someone who is in the UK and having treatment with Dr B. I have a Skype app this coming Saturday. I hope it turns out that I'm suitable for LDI treatment. I have had IV & oral abx over several years. One of my worse symptoms are fatigue & muscle weakness. My legs are very weak I can't walk very far. Most if the time I am housebound or bed bound. I have been ill with Lyme & co since 2009. When you say shot- is it an injection? How did you decide on dosage? Did she send you info & instructions to follow? I'm so glad you have had a good reaction. Long may it continue.
 
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Hi. By shot I mean it comes in a syringe and can be given under the skin or (as I take it) sublingually under the tongue. So as Dr. Ty Vincent sees no difference I'm happy to take under the tongue as I can do it myself. Dr. B took all my symptoms and info into account, including that I am very sensitive to medications and herbals since becoming ill and decided my dose would start at 15C. My booster that is in the mail now is 15.5 and the next full dose on Oct 15 (I must wait the full 7 weeks till the next dose as I felt a slight improvement). Dr B covers everything with you. If you can, switch on Radio 2 today as Jeremy Vine is discussing Lyme disease in UK at about 1pm today !!