Anyone have experience with low dose immunotherapy and Neuro Lyme?

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swimman
Regular Member


Date Joined Mar 2016
Total Posts : 32
   Posted 3/6/2018 9:17 PM (GMT -6)   
Anyone ever try low dose immunotherapy to treat Neuro Lyme?

I've tried a bunch of abx and herbals but my symptoms always return - head pressure, eye pressure, ear pressure, stiff neck, achy muscles, muscle twitches, constant headache.

My LLMD wants to start me on LDI which I'm on board with but I'm not certain it will help with Neuro Lyme. Part of me wants to get a lumbar punture to confirm and then possibly explore iv ceftriaxone or rocephine as a good number of people have seen positive results - although some side effects are not great.

Any input is appreciated.

Girlie
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Date Joined May 2014
Total Posts : 33925
   Posted 3/7/2018 12:08 AM (GMT -6)   
LDI was big a couple years ago, and some people got results...but not hearing anything about it lately - so not sure if it turned out to be effective for most people who tried it.

Certainly won't hurt to try it.

Did you treat Babesia? You mentioned had pressure, eye pressure..etc. For me, I think it's Babesia and it flares when I take Mepron to treat Babs.

I wouldn't get a lumbar puncture - just assume you do have neuro Lyme and treat accordingly.
Most people who have active Lyme that's chronic do have neuro lyme.

So you do get symptom relief, but it returns?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

swimman
Regular Member


Date Joined Mar 2016
Total Posts : 32
   Posted 3/7/2018 6:10 AM (GMT -6)   
Girlie - I have Babesia and Bartonella. Have treated with oral abx over the last two plus years and symptoms have come and gone although I don't think that is due to the abx. Not currently treating. My symptoms seems to come on strong and last for a few months and then abate for a few months. However, the headaches and pressure are now felt more continuously whereas in the past, I would get some relief every day or so.

I have some travel coming up and will most likely try LDI after. If that does not work, I'll talk to the doc about other abx that may be used.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33925
   Posted 3/7/2018 12:34 PM (GMT -6)   
So, will you be doing the LDI with your LLMD?

Or with Dr. Ty Vincent (the LDI guru)?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

swimman
Regular Member


Date Joined Mar 2016
Total Posts : 32
   Posted 3/7/2018 12:38 PM (GMT -6)   
My LLMD is one of Vincent's providers. I'll do it directly with her but it's his potions/protocol.

Also thinking about the Buhner protocol but don't want to do both at the same time.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33925
   Posted 3/7/2018 12:54 PM (GMT -6)   
swimman said...
My LLMD is one of Vincent's providers. I'll do it directly with her but it's his potions/protocol.

Also thinking about the Buhner protocol but don't want to do both at the same time.


I have heard from some people that the LLMD's he supplies the LDI to - don't always do a great job at knowing how much to lower or raise...etc.
and felt that may have been part of the reason that it didn't work for them.

So, if you don't get results...you could switch to Dr. TV himself - that is if he's still treating remotely.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

swimman
Regular Member


Date Joined Mar 2016
Total Posts : 32
   Posted 3/7/2018 2:43 PM (GMT -6)   
I'll keep that in mind and thanks for the info.

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 262
   Posted 3/7/2018 4:29 PM (GMT -6)   
I wonder if anyone in the forum has used Dr. Vincent?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33925
   Posted 3/7/2018 5:12 PM (GMT -6)   
I don't remember - but isn't it Crteativegrl (can't remember how to spell her name) one of the members who used it?

I found the sites below in my Lyme folder:


Here's some info on LDI and LDA (which is similar but uses chemicals, environmentals, and foods instead of dead pathogens):

www.voiceamerica.com/episode/87271/low-dose-immunotherapy-a-new-healing-tool
www.betterhealthguy.com/ldi
http://imcwc.com/html5-blank/low-dose-allergy-lda-therapy/

I'd really recommend this FB group for LDI:   
/www.facebook.com/groups/828673227222144/
There is a lot of info in their files and the people running it are quite knowledgeable. 

This FB group is also very good:
/www.facebook.com/groups/1416895628542629/
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 3/8/2018 6:32:45 PM (GMT-7)


k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2550
   Posted 3/7/2018 6:55 PM (GMT -6)   
cakegirl said...
I wonder if anyone in the forum has used Dr. Vincent?


I do. Haven’t noticed anything with my last two doses (although early on I thought it helped). I am not sure if I’ll continue.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33925
   Posted 3/7/2018 7:18 PM (GMT -6)   
k07 said...
cakegirl said...
I wonder if anyone in the forum has used Dr. Vincent?


I do. Haven’t noticed anything with my last two doses (although early on I thought it helped). I am not sure if I’ll continue.


Okay - it was you I was thinking of then. I remember you had some improvement early on.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 262
   Posted 3/7/2018 9:18 PM (GMT -6)   
k07 said...
cakegirl said...
I wonder if anyone in the forum has used Dr. Vincent?


I do. Haven’t noticed anything with my last two doses (although early on I thought it helped). I am not sure if I’ll continue.


Thanks for the links, Girlie.

k07, how long did you use it for? Did it seem to help with your immune system?

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2550
   Posted 3/8/2018 8:47 AM (GMT -6)   
I first tried it in 2015 - did maybe 3 or 4 doses. The buzzing sensation in my feet went away for about a week each time. I did feel I had better energy. Not sure if it helped my immune system. CD57 went up about 20 pts but I had also done about 8 weeks of antibiotics prior.

I just started again in the Fall. I've had no response to the doses (which are a lot lower than the ones I had response from the first time). They recently removed the beta glucuronidase and it is only diluted antigen now. I'm wondering if that is why I'm not seeing a response. Don't know if I'll do anymore.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33925
   Posted 3/8/2018 12:20 PM (GMT -6)   
You said you did lower doses - meaning lower “number” but stronger, right?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2550
   Posted 3/8/2018 2:08 PM (GMT -6)   
Yes, stronger. I had some results with 16c, 15c. This year did 14c, 13c with no response.

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 262
   Posted 3/8/2018 8:31 PM (GMT -6)   
k07, did Dr. V determine what antigens to use or did you ask for specific ones?

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2550
   Posted 3/8/2018 8:36 PM (GMT -6)   
He decided based on history & symptoms.

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 262
   Posted 3/8/2018 8:45 PM (GMT -6)   
Thanks, k07.

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 3/12/2018 9:37 AM (GMT -6)   
LDI (I did it a couple of yrs ago) seemed to push me into the scariest herx I've ever had, honestly. My blood pressure suddenly went higher than it's ever been (typically low) and I was having excruciating cardiac pain and other really scary symptoms. Finally it passed, but I hadn't done anything different but the LDI. I didn't get any "results" either. No improvements. So I actually believe it can make people have bad reactions, though I didn't hear of anyone else having something like that.

lymeInNEPA
New Member


Date Joined Jan 2018
Total Posts : 17
   Posted 3/22/2018 11:25 AM (GMT -6)   
I had an appointment with Dr T recently..and he has shipped the lyme and yeast mix, but I have seen no information besides his youtube videos. I have seen no success stories. I have searched hi and low. I was on the fb and other ppl questioning LDI effectiveness or lack of. I have found many ppl's ongoing challenges with doses and other pretty bad side effects from flares even compared to abx. Taking the borrelia in to your body is scary. Until I see more success stories from LDI, I will hold off. For now... I see Rife has had many ppl coming back and telling their success story..that is what I want to read and I do see many of these experiences.
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