Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

[snb358]

What kind of doctor prescribed it for you? An immunologist? Seems more accessible than LDI. Why was the environmental and food allergen chosen? Do you have a lot of environmental and food allergies? How much does LDA cost?

An allergist prescribes it for me. Environmental and food allergies are a key feature of my illness, thus the decision to pursue the relevant course of treatment. Based on what I've read, doses, which are administered bi-monthly, can range from $30 each to $300 each, depending on the provider you choose. My doctor is in Brooklyn and charges the $300. Most other doctors I see charge less than $100 per dose.

Note that this is not a common treatment, so you'll have to find a practitioner in your area. Here's a list I found of doctors: http://www.drshrader.com/lda_physicians.htm

I'm not advocating the treatment yet, and won't do so until I've had personal, long-term success with it. Fingers crossed, though.

 

[anuj]

Hi all, it’s been ages since I’ve posted here. Just haven’t felt up to it, but reading, reading, reading!

Curious as to any updates from those taking LDI treatments thus far. Looks like the last post was over a year ago. LDI has recently been recommended to me, and am just starting to read up on it. I have heard lots of negative things and a handful of positive.

I’m hesitant to start LDI, mostly on account of some horrible accounts I read about. And also because I tried LDN (low dose naltrexone) but had issues with side effects (could not progress from an ultra low dose to a low dose without worsening and prolonged symptoms) so I never stuck with it. But thankfully with LDN you eventually recover when you stop taking it. I’ve read multiple accounts of people doing LDI who have never recovered from its side effects.

So I wondered if anyone here is able to compare the two treatments in terms of how they affect the immune response (LDN appears to have a protective aspect, unsure if the same can be said of LDI), and also share personal experiences with symptom relief for either or both treatments. Has either made any difference at all, and if so, how? And is anyone taking both??

Thanks in advance!

 

[snb358]

Hi all, it’s been ages since I’ve posted here. Just haven’t felt up to it, but reading, reading, reading!

Curious as to any updates from those taking LDI treatments thus far. Looks like the last post was over a year ago. LDI has recently been recommended to me, and am just starting to read up on it. I have heard lots of negative things and a handful of positive.

I’m hesitant to start LDI, mostly on account of some horrible accounts I read about. And also because I tried LDN (low dose naltrexone) but had issues with side effects (could not progress from an ultra low dose to a low dose without worsening and prolonged symptoms) so I never stuck with it. But thankfully with LDN you eventually recover when you stop taking it. I’ve read multiple accounts of people doing LDI who have never recovered from its side effects.

So I wondered if anyone here is able to compare the two treatments in terms of how they affect the immune response (LDN appears to have a protective aspect, unsure if the same can be said of LDI), and also share personal experiences with symptom relief for either or both treatments. Has either made any difference at all, and if so, how? And is anyone taking both??

Thanks in advance!

I don't have any experience with LDN but ended up having a very negative experience with LDI/LDA. Is significantly worsened my joint issues and allergies. I would avoid at all costs.

 

[anuj]

I don't have any experience with LDN but ended up having a very negative experience with LDI/LDA. Is significantly worsened my joint issues and allergies. I would avoid at all costs.

Oh no, so sorry to hear Did it ever resolve eventually? Or are you still dealing with the fallout?

 

[snb358]

Oh no, so sorry to hear Did it ever resolve eventually? Or are you still dealing with the fallout?

Unfortunately, it's been almost a year since stopping and my allergies and joints have not yet returned to normal. It definitely f'd up my immune system. I think there's a lot of potential for this type of treatment but the doctors currently prescribing it are well ahead of the research and have zero clue how it works.

 

[anuj]

Unfortunately, it's been almost a year since stopping and my allergies and joints have not yet returned to normal. It definitely f'd up my immune system. I think there's a lot of potential for this type of treatment but the doctors currently prescribing it are well ahead of the research and have zero clue how it works.

I’m not so sure I want to continue being a Guinea pig. I’m almost at the point where I’d rather do nothing until the science catches up. Your story, sadly, has been what I have mostly encountered when readying about LDI. I hope you find some relief going forward. 🤗

 

[max_yazhbin]

Can anyone shed light on what they have experienced or know about LDA/LDI in regards to a new technique that seems to be working for so many. I came across this interview with Dr. Ty Vincent in Alaska who seems to be pioneering this form of treatment with remarkable results. This interviewhttps://www.youtube.com/watch?v=__Dnq_0iZGU (start about 25 minutes into recording. It's one of three interviews, all equally compelling) got my attention. I have now contacted the one doctor in London where I am who Dr. Vincent has trained in this approach and made an appointment. I'd like to hear from anyone who has information or can share info on this as it has me quite excited at the prospect of some hope. I have been severely ill for 2.5 years, firstly diagnosed with CFS/Fibromyalgia and then 3 months ago tested positive for Lyme Disease. So for me any ray of light out of this suffering is something I'm looking at!

https://forums.phoenixrising.me/threads/my-experience-with-lyme-disease.83923/, please let me know if my lyme article helps, hopefully what cured me will cure you too

 

[max_yazhbin]

@Lemnia - I don't know anything about LDA/LDI but it looks very very interesting. My sister has either rheumatoid arthritis or lyme, or rheumatoid lyme - in any event, she's floundering, trying so many different things, trying to avoid the toxic RA drugs.

Let us know how your appointment goes!

Best wishes -

https://forums.phoenixrising.me/threads/my-experience-with-lyme-disease.83923/, hopefully my article can help. If not, I can put you or your sister in touch with John Mionczynski, he might know some things about RA

 

[max_yazhbin]

I don't know much about this, but I don't think any Lyme association suggests treating Lyme with LDA/LDI. I would be suspicious of this if they haven't published any papers.

It is odd because LDA/LDI is supposed to downregulate an overactive immune system, but if you have lyme, wouldn't you rather have an upregulated immune system to fight the infection? Buhner describes how nasty lyme is in terms of getting into lots of places in the body, especially cartiledge.

 

[pete_parker]

I think I doctor in australia
is Dr Mark Westaway in Brisbane area.
also Macfadden in Sydney

WARNING: Do not approach his clinic, Dr Mark Westaway is constantly pressured into closing shop by Medicare Australia. The latest investigation is based on his receptionist "Susan" not giving patients there Medicare invoice for there rebate, there is strong evidence. Full thread posted on another forum.

 

[pete_parker]

It is odd because LDA/LDI is supposed to downregulate an overactive immune system, but if you have lyme, wouldn't you rather have an upregulated immune system to fight the infection? Buhner describes how nasty lyme is in terms of getting into lots of places in the body, especially cartiledge.

LD

It is odd because LDA/LDI is supposed to downregulate an overactive immune system, but if you have lyme, wouldn't you rather have an upregulated immune system to fight the infection? Buhner describes how nasty lyme is in terms of getting into lots of places in the body, especially cartiledge.

I believe it works by "balancing" the immune system which makes it more effective at killing pathogens. LDN is probably a safer bet, as it is generally better understood and less side effect prone.