How to know if scleroderma is lyme induced?

[Jewels]

I was diagnosed about a year and a half ago with scleroderma. Never had skin tightening just joint pain. I found a ap doctor and she started me on minocycline and clyndamyacin oral 10 days out of the month. At first the herxing was pretty severe but did get better. I have been under intense stress recently and joint pain is back with a vengeance. I also have lymph node burning and pain frequently. My question is should I get tested for lyme? If its positive do I go to lyme dr to treat scleroderma? Just still not for sure what I am dealing with. Thank you all for your help.

[Uptowngirl]

I don’t think that it ever hurts to get Lyme testing, especially if you are in a Lyme endemic area. You will find many different opinions about which test to get and even which company to send the testing to. For me, Lyme testing results were borderline so they did treat me for Lyme, but some people remain on Lyme medications for a long time. I still don’t know whether I will need to treat Lyme again. Unfortunately, nothing is black and white when it comes to Lyme.

Reactive Arthritis/ Adult Rheumatic Fever due to strep throat. History of probable Lyme disease. Current medication: Amoxicillin and supplements. Daughter of the late Richie (scleroderma and AP patient for 19 years).

[Cheryl F]

Jewels~

Through informal observation on this forum, we RBF volunteers have noticed a strong association between scleroderma and Lyme (Or Lyme coinfections). So much so that we have discussed supporting research to scientifically quantify the relationship (or lack there of).

Additionally, I can tell you that I am certain that stress plays a significant roll in the severity and/or progression of these diseases. I just posted to UpTownGirl about this. There are hundreds of published research papers on stress and RA (not scleroderma per de, but I think it is not a big leap to apply the results to SD).

Take care~

Cheryl

[Pinkmoth]

I agree that more info (getting the test) couldn’t hurt. I’ve been seeing a Lyme doctor to get rotations of other abx that target Lyme/coinfections and that seems to be very helpful for me. I’m a few months away from my 2 yr anniversary since starting AP and I don’t really have any scleroderma symptoms anymore (had an ultrasound on hands a few weeks ago and no active inflammation could be seen)
That being said, no matter what other stuff my LLmD threw at me, I never strayed from staying on minocycline 100mg twice daily. The llmd doesn’t agree and doesn’t understand that. So you may still want/need to keep your AP doc in addition to an LLMD.

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Spiffy1]

There are varying opinions on this but according to Igenex they like for you to be off all antibiotics before testing for Lyme. This can be a little scary in itself. Some people say it doesn’t matter. I was doing a doxycycline washout before moving over to minocyclene so the two weeks came at a good time for me. That test is very expensive so I chose to follow their instructions.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Jewels]

Thank you all for taking the time to reply. I just had labs again and my scl-70 is up. It jumped from 2.7 to 3.4 which is a big jump for me. I am scared of this nasty disease. I am still on mino x2 a day and clindy oral 10 days out of the month. All suggestions are appreciated. I did just have a hysterectomy 5 weeks ago. Was wondering if anyone elses scl-70 stayed positive or did it fluctuate? Thank you all who help on this site. You are certainly Angel’s sent from above.

[Luck20]

Jewels, I think any surgery is going to be hard on the body and a small step back. Healing takes time, stay the course. It sounds like your on the right track. 🙂

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Luck20]

I tried Olive Leaf Extract and I think its what is helping with pain. Suddenly my pain is down about 30-40%. I read reviews of people using it for arthritis, thats why I ventured to use it. It seems very safe, its suppose to help fight candida and mycoplasma too.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Lynne G.SD]

Hi Luck
I found that Artemisinin was great for my Lyme.I was reading an article about it a couple weeks ago and whoever it was said that it might well work without taking antibiotics.Darned if I can remember where I saw it but it was a veterinary article.If I come across it again I will post it here.

[kater]

My Scleroderma is lyme and myco p induced. I think that is quite common. I treated the Lyme and the scleroderma went. I like the Elispot from Armin as it tests for current infection. I have never paid huge amounts for testing through Igenix or Armnin– I don’t feel its necessary to spend a fortune. Good luck 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

[Luck20]

Wow, thats amazing kater! Thanks for mentioning it, it gives a lot of hope. I’m so happy to hear your efforts payed off.

Thanks for the reply Lynn G.SD. I see so many references to artemisia. Its nice to hear it again, that confirms I should check into it further. There was some reason I was hesitant about it, bit I didn’t bother to jot down why…I guess my note taking could use some improvement. 🙂

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Luck20]

Kater- what are the details of the Elispot by Armine test? Can you take it while on mino? Does a dr have to order it or can it be done at home? How much is it? I assume insurance won’t pay without a positive lyme test.

Thanks so much for your comments. 🙂

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

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