Scleroderma Sine Scleroderma

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Scleroderma Sine Scleroderma

Postby rainbow2 » Sun Mar 13, 2011 12:06 am

I think that I have Scleroderma Sine Scleroderma but continue to be misdiagnosed. I have Raynaud's, Esophagus Dysfunction (trouble swallowing), and GI problems, but because I don't have any hard skin, the rheumatologist won't take me seriously. He insists that I just have Fibromyalgia, refuses to test me for SD, and told me to come back in six months. Fibromyalgia doesn't produce those symptoms! I'm losing TIME with this doctor's stonewalling. I'm scared that the doctors won't figure out what's really wrong with me until I'm on my deathbed. :cry:

Without a diagnosis, how will I ever get prescribed the AP Treatment?

I would greatly appreciate any advice.

Thank you,

Rain
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Re: Scleroderma Sine Scleroderma

Postby hopefulmama » Sun Mar 13, 2011 1:34 am

Hi Rain,

I am sure that a volunteer on this board will happily forward you the name of an AP doc in your area who can assess you thoroughly. AP docs don't require you to have a prior diagnosis before seeing you, to my knowledge. I certainly did not need a referral to get into see my current (excellent) AP rheumatologist.

That said, I would not be so quick to assume you have scleroderma sine. I myself have esophageal dysmotility (lower 2/3 of my esophagus has almost no peristalsis) and I have Raynaud's and GI issues, just like you. I have seen my AP doc for 8 months now and had a million tests and several thorough clinical exams and he assures me I do not have scleroderma. Of any kind. He does, however, feel that I have autoimmune issues (e.g my thyroiditis) caused by mycoplasma infection.

Many people diagnosed with scleroderma on this board have also come up positive for lyme disease and co-infections via IgeneX testing so if you are looking for a worthy next step you might want to consider getting tested for borrelia, babesia, bartonella, etc.

Best of luck to you and hang in there, it is a bumpy road to getting a diagnosis but I am happy to say that the people I have "met" on this board who started AP at the time I was first going through my diagnosis period are all improving on AP and I truly believe that you will be ok too. By the way, my GI says that motility issues are not specific to scleroderma and Raynaud's is certainly not specific to SD either... it is quite common in lupus, RA and many other autoimmune challenges.

Take care and you'll be in my prayers.
A
2010: Lyme+, Adrenal Fatigue, Myco+, Hashi's 12/2007, Esophageal Motility Dysfunction 8/2010. Tried AP from 2010-2012. Gluten/soy/sugar/shellfish/nut free. Try to avoid dairy too... but it's tough ;) Off AP since 5/12... health much improved. 2013: No longer anemic, TPO-antibodies have dropped by 1000 and my adrenals have corrected. Wishing health and happiness to everyone here.
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Re: Scleroderma Sine Scleroderma

Postby rainbow2 » Sun Mar 13, 2011 5:08 pm

Hi A,

Thank you for your kindness.

Yes, I think that my next step will be testing for lyme disease and co-infections via IgeneX.

Thanks again,

Rain
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Re: Scleroderma Sine Scleroderma

Postby richie » Sun Mar 13, 2011 7:47 pm

Hi--CREST which is a very common form of scleroderma and --CREst does not have skin involvement --CREST stands for Calcinosis -Raynauds --Esophageal involvement --Sclerodactyl {sp] and telangacietasia - Very basically the CREST set of symptoms with skin involvement is in reality diffuse --I would suggest you change doctors !!!!--
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Re: Scleroderma Sine Scleroderma

Postby Maz » Sun Mar 13, 2011 11:03 pm

rainbow2 wrote:
Without a diagnosis, how will I ever get prescribed the AP Treatment?



Hi Rain,

Where are you in New England? If you'd like a listing of AP (antibiotic protocol) Physicians, I'd be happy to send them to you. If you can get to Boston, there is a rheumatologist there, Dr. T., who could give you a good clinical work-up for diagnosis and would likely be open to getting you started on minocycline monotherapy, if indicated, while you are looking into the Lyme question. Lyme, if involved, is a very different kettle of fish and would require a different type of physician for both diagnosis and treatment. Seeing Dr. T., however, might be a good place to begin and help you get going on a basic abx therapy protocol. As a conventional rheumatologist with a good deal of SD experience, you could also rest assured that he would be more able than many rheumies (who likely don't see as many SD cases in their practice) to identify what type of SD may (or may not be) in question....and an additional benefit is that he takes insurance!

Hope this helps, Rain...just let me know if you need a physician list...and a warm welcome to you! :)

PS It doesn't take a rheumy to prescribe abx therapy, but it will require a rheumy to fully evaluate your condition to provide a diagnosis.
RA/Lyme - ABX since 11/06
Personal Progress Thread: viewtopic.php?f=3&t=301
Current Abx Protocol:
Clarithromycin 250mg BID re-started 11/5/13
Moxatag 775mg BID started 3/8/14
Plaquenil 100mg BID
Ivermectin 1mg (rx compounded) daily, started 9/21/11
Various staple supps: Enhansa, NAC, ALA, Morinda Supreme, KriaXanthin, B Complex, Milk Thistle, Dessicated Adrenal, Adaptan-All, Probiotics, Systemic Enzymes, Vit D3, Magnesium Citrate, Sodium Ascorbate, ImmunoPro, Nrf2 Activator, Liposomal glutathione.
Intermittent supps: Chemet every third day, along with NAC and BioPure Chorella followed by BioActive Minerals day following oral chelation. Weekly Myer's Cocktails and Glutathione IV Pushes for detoxification. Tri-salts and Opticleanse GHI.
FIR Sauna and other detox methods as described in Personal Progress Thread.
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Re: Scleroderma Sine Scleroderma

Postby rainbow2 » Mon Mar 14, 2011 12:12 pm

Yes, I would love to see Dr T in Boston if he'd be willing to see me without a solid diagnosis.

I obviously wasn't happy with my first rheumy :lol: and will tell my insurance co. that I want to see Dr. T for a 2nd opinion.

Thank you, guys, for your support. I really appreciate it.

-Rain
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Re: Scleroderma Sine Scleroderma

Postby Maz » Mon Mar 14, 2011 12:46 pm

rainbow2 wrote:Yes, I would love to see Dr T in Boston if he'd be willing to see me without a solid diagnosis.

I obviously wasn't happy with my first rheumy :lol: and will tell my insurance co. that I want to see Dr. T for a 2nd opinion.

Thank you, guys, for your support. I really appreciate it.


Hi Rain,

I'll send you a PM (private message) with Dr. T's contact info - to retrieve your PM, just click above where it will say (1 new message) right beside the Control Panel tab.

Rheumies diagnose rheumatic diseases, as this is their specialty, so if you do have some form of SD, then Dr. T. should be able to pin it down for you. In any case, if it's not SD, then fibromyalgia is also treated with AP, so hopefully Dr. T. would be open to treating you anyway. If not, there is another AP doc in Northampton, MA (not a rheumy) who uses AP and will also do IV therapy.

Again, though, if you do have Lyme and possible coinfections, a LLMD (Lyme Literate MD) would be needed. ;)

Fingers crossed Dr. T. can at least figure out what is going on with you as he's seen a lot of SD in his time.
RA/Lyme - ABX since 11/06
Personal Progress Thread: viewtopic.php?f=3&t=301
Current Abx Protocol:
Clarithromycin 250mg BID re-started 11/5/13
Moxatag 775mg BID started 3/8/14
Plaquenil 100mg BID
Ivermectin 1mg (rx compounded) daily, started 9/21/11
Various staple supps: Enhansa, NAC, ALA, Morinda Supreme, KriaXanthin, B Complex, Milk Thistle, Dessicated Adrenal, Adaptan-All, Probiotics, Systemic Enzymes, Vit D3, Magnesium Citrate, Sodium Ascorbate, ImmunoPro, Nrf2 Activator, Liposomal glutathione.
Intermittent supps: Chemet every third day, along with NAC and BioPure Chorella followed by BioActive Minerals day following oral chelation. Weekly Myer's Cocktails and Glutathione IV Pushes for detoxification. Tri-salts and Opticleanse GHI.
FIR Sauna and other detox methods as described in Personal Progress Thread.
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