Has anyone here started AP without an official diagnosis?

[k-leigh]

Hi Everyone,

So far only my ana has come back positive. I am getting new and progressive sx all the time.

Swollen finger joints, difficulty swallowing, weak shoulders, sore hips, my feet hurt when I walk like I am walking on rocks, carpal tunnel,tingling body, no appetite, dry eyes and mouth, kidney infections, weight loss etc etc etc.

I went to the rheumatologist this week but he said he doesn’t think I have scleroderma because I have no skin involvement or Raynauds. It is so frustrating to have so many sx and negative antibody tests. And yes I have been tested for myositis, Lupus and RA. All negative.

I am wondering for those of you who do AP, did any of you start AP before official diagnosis?

I have a feeling it may take me a long time to be diagnosed since I do not have the classic sx but I want to start looking into treatment options now.

[kater]

Hi K-leigh
well having a diagnosis can be nice (or not lol) but in many respects doesn’t change much. There are so many overlap disorders and undiagnosed/undiagnosable things. And many times the docs don’t agree. The rheumy says I have SD, Lyme doc ( he will help you next week !!:-) thinks I have lyme that acts like SD. I do not have scl 70 antibody. To me it doesn’t really matter what I have–it is some sort of infection as I will never accept this autoimmune theory that my own body is trying to kill me–and the treatment is the same. If I were in your shoes I would just start AP as soon as you can. I am just dashing off for the evening, but regarding, your PM, yes the first symptoms I had were carpal tunnel and raynaud’s at the same time and then not much else for a year. In my knowing having raynaud’s and/or skin involvement are not prerequisites for SD. Local rheumies are not very knowledgable about SD IMHO. You might try mine for a second opinion. Hang in–you will be on the path next week I know it
hugs
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[lynnie_sydney]

Hi k-leigh
sounds like kater has suggested some kind of road forward – which, if yes, is great. I was going to suggest that you consider getting tested for Lyme (Igenex lab) and go see a Lyme Literate Doc (LLMD) who will treat you based on your clinical symptoms.

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)

[k-leigh]

Thanks Kater,

I see you tested positive for Lyme and mycoplasma. How did you get tested for these and who did it?
You can pm me if you want.

Hugs.

[k-leigh]

Thanks so much Lynnie I will look into Igenex.

Hugs.

[k-leigh]

Is getting tested for lyme in Canada basically useless? My local hospital lab can do the mycoplasma testing as long as have a req from a gp. Asking for all these tests is probably going to piss my gp off. Sigh.

[m.]

I had an unconventional dx. I had a sudden severe arthritis flare in 2008. I did not have good insurance, so a lot of my decisions were based on getting the most for my dollars spent, and not wasting time.

I knew I wanted to get on antibiotics ASAP.

I went to an alternative MD who I knew to be somewhat cooperative and open to ideas from patients. I requested to get tested for strep, mycoplasma, and Chlamydia from The Arthritis Research Center. He signed off on the kit, and did not insist on my having the traditional arthritis bloodwork panels done. No X-rays. No other testing except a CBC.

The TARCI test results came back positive and he gave me doxy. It wasn’t smooth sailing bc he was pushing for me to do another protocol. I can’t remember the name of the protocol now, but I was resistant and wanted to try doxy by itself first. He wasn’t happy, but agreed.

A few months into the protocol I had a setback and my joint pain got worse. It scared me. I called the alternative MD, but he was little help. He also wanted me to go down to the office, and an office visit was so expensive without getting much out of it. I decided I needed to get to someone experienced with Brown’s protocol, so I made an appointment with Dr. S in Iowa just before he retired. It was a long drive, in terrible weather, but I’m so glad I went.

I had my TARCI results, I had my doxy rx, and I had joint pain. That was enough. I declined IVs but wanted to know they were a future option if I did not respond to oral doxy. Since then, he has been writing my prescription and helps when I’ve hit a rough patch. It’s been a lifesaver.

Good luck!

[k-leigh]

Thanks so much M. I am in the same boat. Not a lot of money and no time to waste. How did you know to ask for chlamydia mycoplasma and strep tests? No lyme?

K.

[m.]

@k-leigh wrote:

Thanks so much M. I am in the same boat. Not a lot of money and no time to waste. How did you know to ask for chlamydia mycoplasma and strep tests? No lyme?

K.

No short answer to that one. I had read The New Arthritis Breakthrough. Someone on a Yahoo Group of all places strongly suggested testing with TARCI as the starting point. The director of the lab used to work with Brown.

Anyways, rather than get paralyzed with too much varied information, I followed most of this person’s advice. It was just one of those “this feels right” decisions on my part, & it also fit in with my financial limitations.

I did the TARCI testing for a baseline before starting abx. I tested both myco & chlam to see what I had, and strep was important to test for bc that would need a different abx.

The plan was to do a baseline test, then a follow up test in about 12 months. I also started out with 50 mg doxy MWF and raised it slowly.

I skipped Lyme testing due to cost, and also because this same person felt Lyme would clear with Brown’s protocol of low dose pulsing abx.

If I did not respond as well as I did to the low dose pulsing doxy, then maybe I would have gone ahead & tested for Lyme, or gotten IVs, or rotated in other abx.

[kater]

Hi K-leigh
Well, Doc C who you are seeing Wednesday IS a Lyme Doc. And a good one. He does other things (believes in infectious cause) but Lyme is his specialty. Yes you can get myco testing through your gp from the provincial lab and it will be covered under your health insurance. Dr. C will do the testing through Igenex for you–tests 188 and 189 and it costs about 200$ plus 70 for shipping. If you can’t afford all that on top of the visit I can tell you how to get it done a bit later. He may diagnose you on symptoms and is very fair and reasonable if you tell him costs are a concern. I will hold you in my thoughts and hope to hear how it went next week. Until then, keep the faith–you are on the right path!
cheers
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[k-leigh]

Ok, Kater,

I was actually thinking of cancelling my appt because I am starting to feel kind of hopeless. I feel like I am pissing off the regular dr’s with my constant requests for different tests. I also feel like the regular dr’s and specialists don’t believe in the lyme tests done through the states. But I feel like I am slowly dying and I can only eat boiled spinach and shakes at this point my swallowing is so bad.

So I will keep my appt with Dr C.
Can he do the mycoplasma test too Kater?

[kater]

Hi K-leigh
don’t give up! Yes the conventional docs do not believe in the Igenex testing–least not any I have found. Doc C is not a conventional doc though. 🙂 He is a naturopathic Lyme doc. He can order the myco testing but anything that a naturopath orders you have to pay for plus a 17$ fee. Grrrrr. No idea what that test costs. Why not see my rheumy for a second opinion? He doesn’t believe in AP–or at least he didn’t before seeing me improve–but he is a brilliant man in his field and may diagnose you or order tests. He now says I should probably be on mino for life –as he says “if that is all it takes,,,,,” and prescribes it for me.
I also saw a rheumy in Vancouver who I really liked. Can PM you his name if you like. Take care. kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Krys]

@k-leigh wrote:

So I will keep my appt with Dr C.
Can he do the mycoplasma test too?

Yes, LLMDs do run those tests, too. I did mine through my LLMD’s office.
Krys

[Randy]

Hi K-Leigh,

To make a long story short. I was a living autopsy, and all my tests were negative. However, I was on a “sorta AP” dose of 50 mg doxy twice daily from July-Oct ’07 while my Rhuemy #2 did not know what I had. He said he had read a report about it working. Although I suspected I had SD, when idiot Rheumy #1 found out I was on “AP”, she ordered me off immediately, saying, “I know what SD is, and you don’t have it!”. She said a lot of other stupid things too. Unfortunately, upon being off of the “sorta AP”, my symptoms came roaring in like a lion within 6 wks. Then the dx was a slam dunk.

According to Dr. F.’s office, since I had started “AP” pretty early (within 4 months of my 1st symtoms), had I stayed on AP without stopping I may have “derailed” the SD from getting on the tracks.

What do you have to lose by starting AP immediately before dx? Some acne?

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[k-leigh]

Thanks for the info Krys!

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