@mad1max wrote:

One thing I forgot to mention concerning my daughter’s condition. Prior to her RA diagnosis, she has presented with Raynaulds – especially during the winter when it is cold – her hands turn very red or blue and very cold. It is not so noticeable now that the weather in Tucson is 90 degrees. She had not been diagnosed with SD, I know that Raynaulds is a strong indicator of SD – so I am wondering if anyone out here has any Raynaulds without SD or any insight as to tests that can be done to positively determine SD. No doctor has brought the possibility of SD up, however from what I am reading on these posts most with SD have Raynaulds…Max

Hi Max,

I have just RA and also had secondary Raynaud’s in my first year after diagnosis, but this resolved over time with abx therapy. Raynaud’s can be primary or secondary, meaning it can exist alone as a syndrome of symptoms or exist as an overlap with other inflammatory rheumatic conditions. While it is usually the first presenting symptom of scleroderma, it can present with other rheumatic conditions.

Trying to remember, was your daughter ANA-positive? The ANA test is usually run first to screen for autoimmune diseases. If positive, further testing can be run, depending upon the pattern exhibited, to screen for positive labs for specific diseases. The following Lab Tests Online link explains better than I can do:

http://labtestsonline.org/understanding/analytes/ana/tab/test

So, essentially, if the ANA returns with a speckled, nucleolar or centromere pattern, then further testing can be run to determine what type of scleroderma presentation – localized or systemic and all the variations that may occur.

Strangely, some folks will test positive for SD, but have a negative ANA, much as can happen with RA. A person may have a positive RF, but be ANA negative. Docs, in general, however, don’t like to make a scleroderma diagnosis unless both labs and symptoms are definitive and will not treat until symptoms become a problem. This is because there is nothing in conventional medicine to treat this disease, except palliatively.

There is a bit more info on the main RBF site in Appendix B of the Historical Protocol about various labs that you can read here, including the anti-SCL-70 test for SD and the anti-centromere test for CREST:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-7638

For Mixed Connective Tissue Disease (MCTD) presentations where scleroderma may also present with lupus, RA, or other rheumatic diseases, they will also test RNP antibodies, which are present 95% of the time in MCTD. You’ll find screening lab sites online, like the following:

http://www.arupconsult.com/Topics/MCTD.html

In any case, Raynaud’s can be secondary to many rheumatic diseases and not exclusive to scleroderma, probably by virtue of the fact that systemic inflammation affects blood vessels, too.

Ultimately, according to Dr. Brown, all rheumatic diseases were treatable to varying degrees with AP, as he believed they all had an infectious component. 🙂 And, there are some home remedies to help manage Raynaud’s until AP kicks in…for e.g. systemic enzymes like serrapeptase (break down fibrin) and help to thin blood, Far infrared sauna, hot wax paraffin baths (as used in nail salons and can be purchased inexpensively from Walmart), warming mitts, electric heating pads/blankets, etc. In my case, I used a combination of these (still use my FIR sauna and systemic enzymes), but really only had minor Raynaud’s in a few fingers and toes occasionally.

@mad1max wrote:

One more thing, spoke with a friend today who is an MD, who ask me about my daughtes condition and I told him we were trying the antibiotic route. He had not heard about AP before, however, he mentioned that he was having some stomach and esophagal issues and had been experiencing some migratory bone pain in his hands, fingers, elbows (he was worried that this might be the start of RA). However, on thinking back, when he took a 15 day course of Doxy to resolve the stomach issues, the bone pain quickly disappeared as well. This really got him tinking about the connection, and I gave him the RBF websight info and told him to get Shammell’s book.

Max, the stomach and esophageal issues as related to arthritis reminded me of the Italian studies that were run on RA patients who had helicobacter pylori…the spirochetal stomach infection that can cause severe acid stomach, gastritis, reflux, stomach cancer, etc. When the RA patients in this study were given clarithromycin (brand = biaxin), a macrolide abx used to treat H Pylori, they discovered that these patients had a significant reduction in RA disease activity over the course of two years! The Italian authors of this study strongly suspect H. Pylori as a causative pathogen involved in the etiology and disease progression of RA.

Study summary: http://www.ncbi.nlm.nih.gov/pubmed/12144579

Journal of Rheumatology commentary: http://www.yourhealthbase.com/database/a115b.htm

Full study: http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2036.2002.01284.x/full

Many bugs have been tied to RA, including but not exclusive to: various strains of mycoplasma, chlamydia pneumoniae, oral spirochetes, Lyme spirochetes, protozoan infections, e coli, staph, proteus mirabilis (causes UTIs), ureplasma, prevotella, strep…the list is pretty extensive and there is a wealth of research on these bugs and RA. When you mentioned the combination of symptoms your friend has experienced, the H Pylori study came to mind as something he may want to further look into. Here’s a couple more:

http://www.ncbi.nlm.nih.gov/pubmed/21902767

http://www.ncbi.nlm.nih.gov/pubmed/12102474

Helicobacter pylori is a common resident in the gut and it may be made worse by NSAIDs, DMARDs and biologics that suppress the immune system. So, it’s a bit of a chicken or egg situation with all this…but, the Italian study is pretty interesting in light of the fact that the RA symptoms were reduced so significantly with abx therapy. The length of treatment also suggests that long-term therapy is required for these patients and that H Pylori is a persistent infection. Not surprising, as spirochetal infections may also become chronic with various stages (acute, disseminated and chronic persistent), just like syphilis and lyme disease. Additionally, have to wonder if the RA patients would have done even better if they’d been given a more comprehensive abx therapy, including a tetra, a macrolide and a nitroimidazole, similar to the protocols as outlined by Barry Marshall, discoverer of H. Pylori and stomach ulcers.

http://helico.com/?q=node/8

Testing for H Pylori may not be as accurate as we may think either…these spirochetes are pesky critters, very pleomorphic (shape shift) and I have read that it can be difficult in some cases to detect without stomach lining biopsy. Even then, if the pathologist is only looking for cell-walled forms, then it could be missed. Empiric therapy, as your doctor had tried with doxy, seems to be the best test. 🙂

when I was on doxy for a while my AP doc suggested Doxylin was the best choice – but that is made by alphapharm and I think that’s an Australian based generic manufacturer. I think there are probably better generic manufacturers in the same way as for mino. Others may have insight on this. Vibramycin is the brand (maunfactured by Pfizer) and you should be okay with this

Today my daughter is not feeling well – no definite symptoms – just says she is not feeling well.

Max – that’s pretty common herx type symptom – a little flu-ey or just ‘not feeling well’