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Hello,
I am new here. In Feb 2017 I got strep. I was put on a round of Amoxcillan. Three weeks later my life as I knew it was over. It started with a tingling sensation on my face, followed by a sensation of heat and facial flushinf. All of a sudden I had super high BP and pulse. My skin started to look red and shiny and my nails got red. I suddenly had no appetite. Burning all over my body. Then skin started to get tight. My skin started getting a sticky feeling and I seemed to be losing fat in my finger pads. Skin got dry and started to get tight. Dry mouth and eyes. Skin tightening and turning tan all
Over body. Joint cracking and pain. What sounds like tendon friction rubs. Gerd, feeling like I cant breathe, recently fingers turning blue. My face has gotten so tight it is starting to effect my vision. I was a premie born at 26 weeks. I have retina issuss, cataracts and am missing a lot of small intestine. This seems like diffuse scleroderma but Ana by Ifa is negetive as well
As skin biopsy. Every day I seem go be getting worse and no diagnosis. I did however get a diagnosis tbe other day of IgG positive lyme ( but not from one of the big 3 labs) I know the strep kicked on something but I am at a loss. I am not seeing a LLMD at this time but they want me on doxy right away. I am scared. I am only 28. I don’t want to die. Any advice please!Hi Goldbergl,
Very sorry to hear about your recent run-in with scleroderma-like symptoms. As you have a positive IgG for Lyme disease, my best fellow-patient suggestion would be to go to an experienced Lyme Literate MD (LLMD) asap. You can access the “most experienced” LLMD list by clicking on the Resources tab above and then selecting Doctor Search. This automated doc search system allows you to select up to 3 LLMD lists (either 3 states or 2 states and the “most experienced” LLMD list). Just carefully follow the instructions on the Doctor Search page and you will find the links to access the automated system below the instructions on that page. If in the US, select US LLMDs. Once you have selected your 3 lists, they are automatically email to the address you provide. After using the system, your IP will be blocked, so if further docs are needed, just let me know. The “most experienced” LLMD list has some really good docs on it, but certain parts of the US have a real dearth of docs, so sometimes travel is necessary. Many of these docs don’t accept insurance, so selecting a doc carefully may be important to you in terms of costs, distance, approach to treatment, and degree of experience.
You will find some scleroderma/Lyme research here:
Scleroderma Research Infections/antibiotics
Let us know how we can help further.
Hi Maz,
Thank you. I feel like things are getting worse every day and I am
Scared. This morning I woke up and felt like the tight skin is around my heart now and that someone is choking me.Goldbergl, there is a moderator here, Pinkmoth. She was in a similar condition last summer (now 90% better) and I think she can help to provide some reassurance by sharing her experience with you. If you have trouble finding her on this forum, then let me know and I will try to get you in touch. Till then, hang in there!
I sent you a private message gold
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, biocidinHi Goldbergl
Hang in there! I have Lyme induced scleroderma diagnosed 2011. I began AP for scleroderma initially and then a few months later when the Lyme was diagnosed I began more aggressive treatment and lots of alternative healing and supplements to support my system. I agree with Maz about finding a good Lyme doctor. Anti inflammatory diet is very important and all the things you can do to lower your stress level. These are things you can do without waiting. My lyme and scleroderma are under control now and almost no symptoms other than some fatigue and my neck is slightly tight on one side. I got on treatment pretty quickly and even though I have diffuse with lots of initial skin involvement it has never advanced to my organs. Feel free to message any time. If you have a long wait for Lyme treatment perhaps your GP can start you on minocycline.
It is a scary time but read some of the testimonials and try not to panic.
sending you healing
kateSystemic 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, CHaving had diffuse scleroderma –it sure sounds like full blown diffuse scleroderma –ANA is not a marker for scleroderma –ask your doctor for a nail fold capillary test –its so nothing and tells so much –In my opinion while an LLMD may be good for the over-all disease -you have many many symptoms that really need to be managed by an internist or other doctors –reflux -esophagus issues –Raynauds sounds to me you have these issues as well as skin issues which resolved with me as the over-all disease was treated -You MUST take care of these symptoms to prevent serious damage —
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