Been a long time since I posted here. To keep it brief -- hubby and I were dx 1987, got treatment, then got effective tx for LD and Co starting about 2004. I'm fairly well recovered. Hubby is mostly fighting babesia these days; no sx of LD or bart that we can point to.
Hubby has rheumatoid arthritis, presumably Lyme related, and it's getting worse at a faster rate this past year. Has anyone taking treatments for RA while treating LD/Co? The drugs for advanced RA all seem to be immune system modulators, which doesn't seem like a brilliant fit with TBD rx. If you have any recs for a LL rheumatologist -- on the west coast would be lovely -- please send me a message. Thanks!
And hi to some old Lymenet compadres. Sorry to see you here, if you know what I mean.
Posted by beaches (Member # 38251) on :
East coast here! Interested in folks treating RA as well. RA meds don't make much sense to me either for many reasons. Also interested in east coast rheumys! Pls PM if you know of anyone. Thx in advance.
Posted by Ellen101 (Member # 35432) on :
He should really try the Autoimmune Paleo diet. People with RA have had amazing results. My Rheumatologist wanted me to go on Enbrel and I could not believe how much my pain decreased just by changing my diet.
Aaargh. And just when I was getting all those lovely garden porn magazines and picking out nightshade veges...oh well. Doubt my hubby will try Paleo right off the bat, but I'm also fighting fatigue and stiffness so I will. Thanks! (I think. Aaargh. I love my home-made bread! Aaargh!)
Posted by lax mom (Member # 38743) on :
Protomyxzoa Rheumatica causes RA and other auto immune diseases - hence the last part of the name. If he has that he should be on a low fat (less than 15 grams) whole foods vegan diet. As PR has many symptoms similar to babesia, such as air hunger and fatigue, then he might have it.
It is really hard for most people to follow such a low fat diet. After two years of it, I finally got the idea of using fat binders like Proactol. I can eat 10 grams a meal and take one pill that will bind with all of it. I get essential fats in liposomal vitamin C and liposomal EDTA. I can't do the vegan but I am vegetarian.
Low Dose Naltrexone is the best and safest drug to use for RA or any other auto immune disease. Google LDN Homepage for more information. It boosts regulatory T-cells 300% to call off the attack. My son put his type one diabetes into remission with it.
Posted by marypart (Member # 27012) on :
I second the recommendation of roadback.org
Also, a lot of doctors think that as you kill off infections, sometimes other infections in the biofilm appear and cause problems.
There are doctors out there who will use antibiotics for arthritis.. not just lyme arthritis.
My son had arthritis all over-- it was beginning to look like RA or Ankylosing Spondylitis. His LLMD rheumy treated for multiple infections with combos of abx, antivirals, antifungals and antiparasitics. There are definitely Antibiotic Protocol doctors in CA, but I would think that most Lyme docs would be open to an AP protocol.
Some relevant studies:
Carter's work at South Florida where people went into remission on combos that included Rifampin.
These are just a couple of studies. There is tons of research out there connecting arthritis to infections--bacterial, viral, fungal and parasitic.
Posted by Judie (Member # 38323) on :
My body had a bad reaction to LDN. Everyone is different.
Doctors are actually giving doxycycline to RA patients now. I actually had one doc suggest it to me before I got infected with Lyme.
Here's an article: Antibiotics Helpful for Rheumatoid Arthritis By Jacob Teitelbaum, MD
"By 2001, 4 double-blind studies showed doxycycline to be effective in RA (and it is remarkable that these studies were able to be done without drug company funding). In a 2001 study4, the authors concluded “Four double-blind clinical trials have now clearly established the efficacy of minocycline in the treatment of RA. The mechanisms of action of almost all therapies for RA are poorly or incompletely understood; tetracyclines are no exception..."
Posted by lax mom (Member # 38743) on :
Low dose Mino was one of the meds I read about on the roadback website. I was on 50mg/day for most of last year. It was interesting that at that small of a dose, it kept my brain fog at bay.
I am HLA DR4 positive, so I have a tendency to go auto-immune.
Posted by nefferdun (Member # 20157) on :
The first few times I tried to use LDN I thought I was having a reaction to it. No matter how low the dose I would immediately develop urinary problems that were driving me crazy. I gave up.
6 months later I tested positive for protomyxzoa. I began the low fat diet and ivermectin. At the same time, I was having what seemed to be a thyroid flair. I have Hashimoto's. I was rapidly losing weight even though I ate constantly and could not sleep. I was very irritable.
I decided to give LDN another shot. This time I had no trouble with it and my thyroid symptoms disappeared. I had been having a fever all winter and that went away. In two months, I felt as close to well as I have been since 2006.
So to all those who have had a bad experience with LDN, it might be causing a herx and not a side effect. LDN is the best drug you can take for MS, RA , Crohn's or almost any auto immune disease.
The Promise Of Low Dose Naltrexone is extremely informative. Up the Creek without a Paddle is the story of a woman whose husband had MS. It took sometime to convince him to give LDN a try but when he did, his MS stopped progressing. The trouble with any auto immune disease is once the damage is done, it is usually permanent. That is why it is important to try LDN sooner rather than later.
Posted by beaches (Member # 38251) on :
Excellent comment re: LDN nefferdun. My kids are taking this med and will be on it forever if only to just prevent autoimmune issues that run in the family. I am hoping my BFF will listen to me and start taking it as well.
I cannot take LDN unfortunately. I am very interested in mino and doxy for my issues and I am FINALLY going to an LLMD soon that I think will help me.
Thanks to everyone who responded to this post. And thanks to MinouCatAgain for posting in the first place.
I'd really love more feedback Posted by Tincup (Member # 5829) on :
Hey hey Minou!
Sort of good to see you again, if you know what I mean! Sorry to hear about hubby's problems advancing as they are.
I, too, would suggest the roadback foundation. I flip out seeing all these drugs thrown on the market for RA and other "auto-immune" disorders. The list of side effects is enough to put me in a tizzy!!!
No one will ever convince me that in the past couple of decades all sorts of people who are not connected to each other suddenly have developed bodies that have turned on them and are now destroying them.
Hogwash!
I believe it is infection based. The 9/10 people who the Lyme and other tests missed perhaps? When I compared the numbers of auto-immune and missed Lyme cases, they were so close it was scary!!! Anyhow....
If no one knew I had Lyme, for example, they'd think I had RA, so I see and experience the destruction and feel that pain.
I have less problems/pain/advancement when on antibiotics. So that is what I'd suggest checking into, at least from my perspective.
Hope your garden is a winner, and you stay warm and dry up there! So nice to see you! Really!!!
Posted by MinouCatAgain (Member # 43263) on :
It's pretty clear that the RA is related to an ongoing TBD. Hubby has not been able to go off babesia meds, although Bb and the other coinfections seem to have been kicked aside. He's currently on minocycline -- although not low dose -- and other babesia tx. Abx (including herbal ones) definitely help with the arthritis.
He has treated extensively for parasites with anti-protozoals etc. He and his doc discussed ivermectin, but I don't think he's tried it yet -- not sure if parasites are still part of the picture for him. Good thing to bring up at his next appt.
He's also done a ton of anti-viral tx. Haven't had his viral load checked recently, but as of a year ago it was much reduced (it was off the charts when he first checked it 10 years ago; treating for viruses helped considerably). We've both also done (and do) pretty comprehensive yeast and biofilm protocols. They also helped a great deal. In fact, he had a truly remarkable improvement about 3 years ago and it looked like he was galloping towards genuine health, but he seems to have plateaued and now is declining again. Bugger this illness.
Interesting re your experience with the low dose LDN, nefferdum. He's tried it twice with negative -- although not, I think, allergic -- responses; now that his general bacterial and viral load are much reduced it may be time to try again.
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