Diagnosed with RA... Is it really Lyme?

bdavis said...


After putting in a request from ILADS for an LLMD in my area, it turns out the ONLY one they came up with near me works in the same team of doctors as the one I'm seeing. My doctor even spoke with her about my case a couple weeks ago. So I guess I am in good hands, even though, I really have to be my own advocate in requesting tests for Lyme/coinfections, or nothing will get done. I have requested these tests, which my insurance will cover, in hopes of possibly finding the infections, so I don't have to shell out the big bucks for Igenex:

Lyme AB IGG IGM (trying again)
Lyme PCR
Mycoplasma Pneu AB IGG IGM
Mycoplasma Pneu PCR
Bartonella AB
Bartonella PCM

I'm now waiting to hear back on whether he will approve them. If these don't get me anywhere, then I'll go with the Igenex WB and bartonella tests. Sound like a good plan?

Doc also wants me to do a DMSA provoked heavy metal "body burden" test, to see if possibly being overburdened with mercury might by contributing to my symptoms.

Have you checked into the other resources for finding a LLMD? Not every list has every doctor. I believe I may have some listings in your area so that you have some more choices if you are interested.

Here are all the other options that I'm aware of:
You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And a new resourcewww.LymeDoc.org

evianangel said...
Hi bdavis,

So sorry to hear you are dealing with this....

My symptoms started in a similar fashion with migrating joint pain. I had a positive ANA, but my RA factor was negative so they would not give me an RA diagnosis.

I now know it has been lyme causing my issues all along because I have been treating it and I feel my symptoms are slowly being alleviated. As well as my test results were indicative of having lyme in my system.

I would tend to agree with others here that maybe you should see an LLMD.

Your treatments for RA are not effective? Would you say you have gotten worse since taking the treatments? Steroids suppress the immune system and if you have Lyme it could make it worse.

Do you have autoimmune diseases that run in your family? Anyone else with RA related to you?

I don't see any harm in investigating lyme & coinfections as a potential culprit to your health issues.

Wishing you all the best.

My Aunt has Lupus and RA. Dad has HLA-b27.

All the treatments we tried for RA / automimmune have not worked. Yes, my symptoms have gotten worse. This is why the doc thinks that a hidden infection is the root of my problems.

A rhumatologist initially diagnosed my with RA. After realizing she had no intention on getting me better, and only wanted to pump me full of drugs, I went to a function medicine doctor. He tested me for other stuff. Initially we found brucella antibodies in my blood, so he figured that was the cause. I started on Doxycycline, but after 10 days, it was tearing up my stomach and I just couldn't handle it any longer, plus it hadn't helped, I was still getting flare ups. Upon further, better brucella tests, we realized it was a false positive anyway, but I've had in my mind since then that maybe some other infection in my body cross reacted with brucella to make that false positive test.

We kept treating for autoimmune - Took all sorts of things for leaky guy - bone broth, kefir, probiotics, supplements.I removed all grains and gluten from diet. Removed nightshades. Allergy testing and desensitization for proteus, klebsiella and other potential autoimmune causing things. I even had my own blood serum extracted and have been taking an extract of that to try to desensitize my system to my own blood. Tried urine therapy. At one point, after reading mycoplasma can be a cause of RA, I stared taking serrapeptase. It was very shortly after this I had the worst, middle of the night, kill me now, flare up of my life. Don't know if that was some kind of Herx or just coincidence (because my symptoms come in waves anyway) but it was bad. Going after mycoplasma, I began using, along with the serrapeptase, olive leaf extract and borax. But nothing ever improved.

I tried low dose naltrexone. After even that having no positive effect, doc said, "That works on almost everyone that has a true auto-immune condition. I think we're missing something. You may have a stealth Lyme or Lyme-like infection. Your symptoms of collagen structures being attacked matches up with what borrelia does."

But he thinks the Lyme tests are too unreliable, told me to read Buhner's book, and we are further investigating mercury. So that's where I'm at now.

Post Edited (bdavis) : 6/2/2016 12:27:33 PM (GMT-6)

evianangel said...
I couldn't tolerate the antibiotics either. Now I am taking Buhner's core lyme protocol and thinking of adding some of the other ones in for coinfections, as well as his protocol for lyme arthritis. Maybe you could look into trying some of his protocols?

Sounds like you have been through a lot. Do you have his latest book? If not email me and I can send you the stuff on his arthritis protocols.

Thanks for the offer, but I did get his latest book, and have started on (most of) the core protocol. Its just hard, not knowing if this is really Lyme or now, or what other co-infections I may have. To treat something for 8-12 months and potentially find out its not what you had would suck.

You say you're thinking of adding in some of the things for co-infections, how have you personally discovered what co-infections you have?

For collagen repair I love this stuff!!

www.proteinessentials.com/#!protein-essentials-home-page-1/phm1s/!/Peptan%C2%AE-Hydrolyzed-Collagen%E2%80%93Unflavored-2-LB-BAG/p/62054897/category=0

And I also take this and it makes a huge difference in my hair, nails and skin so I know it is working on my innards

www.biosilusa.com/products/

I put the first one in my coffee in the morning, it does not alter the taste, and the second one I put right in with my herbal tinctures.

I'm confused? Were you on Buhner's protocol when you initially wrote this post? Otherwise your math is a little off on the 16 days.

And, dang you moved up very quickly if you got to whole protocol in 16 days. I imagine you have herxed a lot???

I do want to caution you on the anxiousness. Being anxious is stressful to our bodies and one thing that lyme thrives on is stress. Stress weakens our immune system. When we are weakened like that the lyme takes advantage and grows because there are no bullets being fired at it from our immune system.

So we have to learn to be patient. This was difficult for me. And, you can count on not being well for a long time. This wellness will come subtly and slowly.

As you slowly peel away layer by layer of the lyme disease, you sometimes barely notice when a symptom is gone. I think that is because you treat it for so long that you get used to that symptom. Then one day you realize, oh my gosh that leg doesn't hurt! And you wonder when did it quit hurting.

This is why I love a journal. My journal helped me keep track of my meds, my aches, my blood pressure and my feelings. I noted if it was stormy or a full moon. This allows me to not guess at when I took what herb. It is so very useful. But I do admit that there were weeks where I tired of writing and let it go. But oh well.....

Anyway, hang in there is the jest of this post. This will take time.

Magnesium and vitamin c can cause diarrhea. How much of those are you taking?

I still think 16 days getting up the entire core protocol is way too fast. But we all are different. However.....

Please read this, it is very important! www.tiredoflyme.com/the-herxheimer-reaction.html

The last thing you want is to be sicker.

Dry brushing does work!! Our skin is the largest organ on our body. Those nasty toxins need clear paths to get out of our body. I love dry brushing.

Don't feel badly about how you did the protocol. But I do suggest that when you switch to tinctures you go slow and one at a time for a couple of days so you can see how you react to it.

I had horrible reactions to 2 of the buhner herbs. For some reason they just do not work for me. I found alternative herbs, but it is good to know that those were not welcome in my body.

Traveler said...
Dry skin brushing also help move along the lymph fluid to help us flush those toxins out of our blood easier.

Lyme causes high fibrin for some people, causing "thick blood". www.anapsid.org/cnd/diffdx/hypercoagulation.html

I'll have to pick up one of those. Traveler, how did you determine the mycoplasma coinfection? The test I just did looks for mycoplasma pneumonea but I understand that mycoplasma fermentans is far more common in co-infections with lyme and a causative factor for RA. Unfortunately Lab Corp doesn't test for the fermentans variety.

Seems like myco fermentans by itself could cause most of the same symptoms as borreliosis, but there even fewer options for testing for it.

PeteZa said...
Dry brushing does work!! Our skin is the largest organ on our body. Those nasty toxins need clear paths to get out of our body. I love dry brushing.

Don't feel badly about how you did the protocol. But I do suggest that when you switch to tinctures you go slow and one at a time for a couple of days so you can see how you react to it.

I had horrible reactions to 2 of the buhner herbs. For some reason they just do not work for me. I found alternative herbs, but it is good to know that those were not welcome in my body.

You must be talking about andrographis for one of them. That seems like the harshest one to me, definitely worst tasting :p I'd like to try eliminating it but don't want to give those spirochetes a break!

bdavis said...

PeteZa said...
Dry brushing does work!! Our skin is the largest organ on our body. Those nasty toxins need clear paths to get out of our body. I love dry brushing.

Don't feel badly about how you did the protocol. But I do suggest that when you switch to tinctures you go slow and one at a time for a couple of days so you can see how you react to it.

I had horrible reactions to 2 of the buhner herbs. For some reason they just do not work for me. I found alternative herbs, but it is good to know that those were not welcome in my body.

You must be talking about andrographis for one of them. That seems like the harshest one to me, definitely worst tasting :p I'd like to try eliminating it but don't want to give those spirochetes a break!

Actually I did fine on andrographis, it was the strangest thing that I could not handle eleuthero or sida acuta. One gave me rapid heart beat and the other gave me what I called a butterfly heart beat. Both scary to me so I stopped them immediately. I did great on Andrographis.

I'm not familiar with Mycoplasma symptoms and I don't remember your background.

Do you have symptoms that line up with lyme and don't all fit the mycoplasma 'diagnosis'?