treatment crossroads

[frhorngal]

Hi Everyone,

I'm looking for advice about where to proceed next with my treatment. I have 2 very experienced AP doctors who are recommending different courses of action. I had to do a 6 month washout after pursuing very high doses of antibiotics for Lyme due to gut/yeast issues. Both doctors want to get me back on to the minocycline but due to inflammation, want to add an additional treatment. Dr. E. wants to use LDN; Dr. T wants to use methotrexate. I like the idea of LDN, but I don't like the idea that I have to either compound it myself or receive it in the mail. MTX helped my friends with RA as well as my grandmother…gave them their life back. I'm 30 years old, an avid kayaker, skier, and pianist and my wrists are so inflamed I cannot use them.

I am gluten/dairy/soy/citrus/nightshade free, vegetarian, etc. I've tried MSM, saunas, enzymes, herbals, with no luck etc.

Your thoughts and advice are greatly appreciated.

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[jlc6166]

I can't speak to Mxt.  My wife is on day 5 of LDN for SD and so far has had amazing results.  Getting it in the mail was a very easy process.

[Trudi]

[user=414]frhorngal[/user] wrote:

I am gluten/dairy/soy/citrus/nightshade free, vegetarian, etc. I've tried MSM, saunas, enzymes, herbals, with no luck etc.

Your thoughts and advice are greatly appreciated.

When I went on an anti-inflammatory diet–no beef, pork, dairy, eggs, gluten–I got considerably worse.  I ached so much that my massages that I always look forward to turned into painful experiences.  Being on this diet, I found out later, caused me to turn to nuts and other foods for protein.  When I was tested for food allergies, tree nuts were a biggy.  Gluten came up so low as to be nonexistant.  Rice also turned out to be cautious of–who would think!  My doctor was actually surprised with this.  After resuming my normal diet, I felt much better.

My mother also had great success with methotrexate and wanted me to use it (although she had to stop it herself because of shingles).  I was very reluctant and that was a good thing because I eventually found out I have Lyme triggered RA and the methotrexate would have been counterproductive.

Many on this board are doing well on LDN.  I would give it a try.

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[PhilC]

LDN will work with the minocycline, and methotrexate will work against it. LDN should reduce your risk of getting cancer and methotrexate will increase it (as well as increasing the risk of infections). It shouldn't be a hard decision.

Phil

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

[spacehoppa]

I became really quite unwell on methotrexate myself, with constant colds and infections as well as near constant eye haemmorhages. It turns out I have Lyme, so maybe it's no wonder.

Anyway, if someone offered me LDN, I'd say Yes, yes, yes, even if it is a hassle. It's probably worth trying out. You can always turn to mtx later if LDN doesn't work for you.

[Parisa]

Getting the low dose naltrexone is fairly easy.  You can mail or fax the prescription to the pharmacy, arrange for payment and a little while later it shows up on your doorstep.  Considering the side effects of methotrexate, I would definitely try the LDN first.

[PhilC]

Are you sure Dr. T. is an experienced AP doctor? I really have to wonder since he wants to put you on methotrexate. To me, he sounds like he's another doctor (he's not the only one) who doesn't really believe in the AP and just sees minocycline as another DMARD.

Phil

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

[frhorngal]

Actually, Dr. T is a very experienced AP doctor and has done a lot of research on minocycline and it's use with RA. He wants to get me back on it as soon as possible but needs to get my inflammation under control. I have had significant disease progression on AP alone as shown by my recent Xrays.

I have 2 boxes of LDN sitting on my shelf…3 mg and 4.5mg. I have a hard time taking drugs that come in the mail. I guess I'm old school like that. I also want something that will definitely work. I have been on AP for 3 years and while I believe wholeheartedly in it, I have gotten worse.

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[PhilC]

What other antibiotics have they tried besides azithromycin, doxycycline, Flagyl, and minocycline? And have they tried any other drugs besides Plaquenil, like prednisone, sulfasalazine, Celebrex, etc.?

Phil

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

[lynnie_sydney]

frhorngal – if Lyme is now your diagnosis, then it may be an idea to now consult an LLMD – there are different protocols for Lyme. 

Anything immunosuppressive, as I understand it, is not recommended for Lyme. And that would include prednisone and mtx. Here is a relevant statement from the 2008 Burrascano Treatment Guidelines for Lyme Disease (page 12). Lynnie 

[align=left]Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. 

http://www.lymenet.org/BurrGuide200810.pdf<span style="font-size:2][/size%;”> [/align]
[align=left][/size] [/align]

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)

[superperroRA]

I've had a lot of success with the NSAID Voltaren (with prilosec or in suppository form, or both, to protect the stomach).

If Dr.T is the one in Boston, I'm not surprised he is prescribing MTX or Arava. He always does. I had a very bad experience with him. If you are interested, read my earlier posts.

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