Has anyone had experience with this Lyme treatment?

[DianaW13]

Hi everyone,

I found out in the New Year that I test positive for Lyme (I believe I was infected over 20 years ago). I will talk to my doctor about further testing to see if I test positive for RA yet (have been diagnosed sero-neg for the last few years). I’m still taking 200mg Teva Mino 5 days, 100 mg on the 2 days I take 500mg Azithromycine. I started LDN a few months ago (2.5 mg topical), and it seems to give me more energy. My doctor would like me to consider two other treatments as well, and I wondered if anyone has tried either, and what your thoughts were on them. I am leaning more towards the first.

https://www.draraelmajian.ca/lyme-disease/

http://www.resultsrna.com/ultimate-lyme-disease-support-system/

Thankyou, I appreciate you all so much 🙂

Diana

[PhilC]

Hi Diana,

The antibiotics that you are taking are almost enough to treat Lyme Disease. An LLMD could tweak your antibiotic regimen to make it effective for treating Lyme Disease.

If your doctor is not an LLMD, there is an LLMD in Seattle, WA who does online consultations for people who live too far away to see him in person. If you’re interested, I could send you his info.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[DianaW13]

Hi Phil,

Yes, the antibiotics have helped A LOT. The doctor I am seeing is one recommended by Roadback (here in Ottawa) – I waited 4 years to get in to see her! She is the only doctor I have seen in those years who thought I have Lyme – who even tested me! I mentioned Lyme to other doctors, even my rheumy, but……. The first link to the recommended treatments (LDI) looks very interesting, I wondered if anyone else has looked into it and/or tried it. It is a link provided by my doctor for info on the treatment – the clinic on the link is not hers (but her office does do the treatment).

As always, thank you for your kind reply Phil. Did you look at the info? Your thoughts? I thought I was done researching, now I am starting all over again!

Diana

[PhilC]

Hi Diana,

DianaW13 wrote:

I started LDN a few months ago (2.5 mg topical), and it seems to give me more energy.

Why topical LDN and not oral?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[DianaW13]

To be honest, I really don’t know. I have wondered this myself – I see her at the end of the month, that is one of my many questions. But, I can tell you that it seems to agree with me. Perhaps slower absorption,less herxing???

[PhilC]

Hi Diana,

DianaW13 wrote:

Perhaps slower absorption,less herxing???

In the case of LDN, slower absorption means less effectiveness. Ideally, what one wants is for the naltrexone to be absorbed, do its thing, and be excreted as quickly as possible. That’s why slow-release fillers must be avoided when pharmacists compound oral LDN.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lynnie_sydney]

Phil is right.

Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an “SR” or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt “spike” in the blood stream, its therapeutic effects may be inhibited.

http://www.lowdosenaltrexone.org/#What_is_low_dose_naltrexone

But I think your topical LDN is probably absorbed quicker, not slower as it will go faster into the bloodstream. A good question to ask your Doc next time you see her. Sounds like she is pretty experienced.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[DianaW13]

Yes, I found something on line that said it was absorbed into the blood stream much faster when applied topically. It seems to be working, so that is good.

The LDI treatment (first link in original post) is the treatment that I am not currently on and am trying to see if anyone has had experience with it. I have read mixed reviews about it.

My doctor is very experienced, I don’t doubt her, just new to this whole Lyme thing. Threw me a curve ball for sure.

Thanks Phil and Lynnie, always appreciate your input 🙂

Diana

[PhilC]

Hi Diana,

I want to add that I don’t think too much of those two treatments that you asked about. Perhaps if nothing else has worked they’d be worth pursuing, but if you’re not even on proper antibiotic treatment for Lyme Disease, then you are not at that point.

Regarding the first one, the immunotherapy, I don’t understand how training your immune system to ignore the Lyme bacteria would be a good thing. You should want your immune system to attack and kill those bacteria, not ignore them. I have to wonder if the person who originally came up with that idea is/was a believer in “post-Lyme syndrome” (i.e., someone who doesn’t believe that chronic Lyme Disease exists).

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

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