Lyme or RA or parasites or something else?

[needhelp]

Background: diagnosed w/RA 9/13: rapid onset- (RA onset was preceded 1 month before by fever, cough, rash). W/onset, totally immobilized & crying out w/pain (RF originally 2443) now RF down to 1722 a year later after taking mino & paquenil & ibuprofen. Making progress on AP: less pain & knees swelling has stopped. Anti CCP is still >250.

Still too thin from weightloss of 50lbs which occurred after RA? onset. Terrible fatigue & weakness & insomnia. Take probiotics/PB8, but contracted thrush from dr’s addition of 4mg/daily prednisolone. Dr gave me Rx for fluconazole for the thrush.

Positive for 18 Igg and P23 IgM on 9/2013 Western blot. Positive for mycoplasma, parvovirus, EpB.
Been to 3 rheumies (no AP drs in NJ). Close friend thinks I have Lyme’s parasite, or something else and not RA because of extraordinarily high RF, and that I should see a LLMD.

How do you determine whether you have RA, Lyme, parasites or something else and are getting appropriate treatment? Should I see an LLMD? Are there any LLMDs in NJ?

[Maz]

@needhelp wrote:

Positive for 18 Igg and P23 IgM on 9/2013 Western blot. Positive for mycoplasma, parvovirus, EpB.
Been to 3 rheumies (no AP drs in NJ). Close friend thinks I have Lyme’s parasite, or something else and not RA because of extraordinarily high RF, and that I should see a LLMD.

How do you determine whether you have RA, Lyme, parasites or something else and are getting appropriate treatment? Should I see an LLMD? Are there any LLMDs in NJ?

Hi Needhelp,

Would be happy to send you the full LLMD list for NJ and NY (some of the best are in/around NYC). An experienced LLMD will be able to provide you with a full clinical work-up to determine if you are dealing with Lyme, parasites, other tickborne infections, etc. If you send an email to maz@roadback.org, I’ll send you a list tomorrow.

PS. Did you catch Dr. H’s interview on the Autoimmune Summit? He explained that the critical antibody bands on a western blot are as follows: 23-25 (Osp C), 31 (Osp A), 34 (Osp B), 39 and 83. He says that if a person has reactivity to any one of these antibody bands, he suspects Lyme. In this context, Osp stands for the “outer surface proteins” of the borrelia bug and some of these are so specific for Lyme that they can be due to nothing else. Unfortunately, if you just had a standard western blot run, then you wouldn’t know if you were positive or not on Bands 31 and 34 as these were removed from the test, but are two of the most specific of all. This is one reason why many people prefer to get their western blot done through IGeneX labs in CA, as this lab is more specific, including these important antibody bands.

[m.]

How do you determine whether you have RA, Lyme, parasites or something else and are getting appropriate treatment?

That’s a good question!

It’s not a bad idea to test for a wide range of infections (including viral, GI), hormones imbalances (thyroid, adrenal, sex), and basic blood markers.

Then, you and your physician can come up with a game plan of attack, continuing to test to see if what you’re doing is actually working.

I’ve always wondered if the overall infection burden is reduced, can the immune system take over? In other words, is it necessary to directly treat every single pathogen found on a test result? (Ex: If we reduce our burden of mycoplasma or cpn with antibiotics, will our EBV titers come down too without using anti-virals?)

With a 50# loss and too thin, it might be worthwhile to investigate GI health. Is the GI tract inflamed? Do you need to be taking digestive enzymes and/or HCl to help you digest your food? Is there a gluten problem? Parasites? A good doctor should be able to investigate these avenues for you.

Good luck!

[Karel]

My situation is kind of similar with some differences. I also has a long lasting cough and misere (walking pneumonia?) 6 years before my RA started, I may have had a possible tick bite spot on my arm, I am IGG positive for most virusses and infections and my RA came up overnight, but still is, even after two years, seronegative. My lyme is now Igenex and CDC positive. My impression is that you won’t find out what the actual cause is but it may help finding evidence of eg.Lyme or parasites to start a treatment both for encouragement as well as for insurance purposes. For RA, I believe now, there is no simple causal relation between, cause (bacterial infection) and result (RA), although the infection can play a very important trigger like role. Trial and error is the way I look at things now. Igenex is the better lab for Lyme, but i would, as suggested by various resources be off any medication for a week or longer before doing the test for optimal results. I used to do comprehensive stool test by Metametrix for parasites etc., but since they joined with Genova, my results are so different that I have had a hard time deciding wheather this new test has been an improvement over the old one. The test claims to be more sensitive then a docters test which is generally microscopic vs Genova/Metametrix DNA based. Test can be ordered via doctor or via some internet providers. Success!

[Author]

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