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Hi everyone, has anyone been to Dr. T.M. in Connecticut?
RBFV edit to remove full name of LLMD as per forum policy. Thanks for understanding.
Hi Cherrybaby,
Yes, I see this LLMD. Do you have any questions about him? I think you might be the lady who posted on his FB page yesterday and we had a brief exchange? 😀
Maz,
Yes it was me! I am seriously considering traveling to Dr. TM in Connecticut since there is no one in Texas and I have to travel anyway might as well travel to one of the experts. Thank you for reminding me about this group! I am just trying to research and make sure that this financial expense will be worth while and was hoping to find other families that went to him for Lyme induced scleroderma and if they had any recommendations for an out of state patient. Wanted to know the typical protocol he would use for Lyme induced scleroderma… how long on antibiotics, administered which route? This is all so confusing and scary, feels like this can’t all really be happening you know?
Thank you for listening and your direction!Hi Cherrybaby,
Thanks for confirming it is you! Well, I just wrote you a post and lost the whole lot, as my laptop decided to run updates and shut down!
You’ve found a place here where you will find many others with various forms of scleroderma, at various stages of their “roads back,” and some of whom have Lyme-induced scleroderma. It is critical to be aware that it is a long-term therapy and there are no quick fixes for this tricky (set of) infection(s). The thing about Lyme is that there are 100s of strains of it, some more virulent than others, it shape-shifts and hangs out in biofilm colonies to evade immune detection and antibiotics, requiring different antibiotics in combination to treat these multiple forms, as well as any coinfections that a tick may have passed. It’s been said that 90% of people who get Lyme can take 2-4 weeks of doxy and are fine, if caught early, and yet others may relapse and have lingering symptoms that require re-treatment with longer courses of antibiotics. Unfortunately, if Lyme triggers and perpetuates autoimmunity, it is a bit more complex than this and, for the most part, people with SD prefer to remain on minocycline for life rather than to risk relapse. The upside is that your son has youth on his side, has not been ill for years and reversals for the most part tend to be swifter for the young. Minocycline was developed for teen acne, is well-tolerated, and can be taken long-term without too much concern. E.g,, a co-founder of Road Back who was a patient of Dr. Brown’s, has taken minocycline for well over 3 decades, and remained in remission! If you decide to continue to read and post here, you will find there are ways to support minocycline therapy, such as taking probiotics to protect the gut, vitamin C to prevent skin hyperpigmentation, systemic enzymes to help break down scar tissue, N-AC to protect the lungs, etc., and plenty of supporters along the way. It’s just smart to remember that each person’s journey is unique and what works for one person may not work for another, so becoming your own best advocate (or your son’s) is the ideal, researching everything of interest, and working with a doc who knows their stuff.
I’ve been seeing Dr. M. since 2011 and he has seen a number of scleroderma patients from RBF. He is aware of the work of Dr. Brown and why minocycline is an ideal, central therapy for SD patients. He takes time to assess the whole health picture of each patient, running additional testing to look for tickb0rne coinfections that may need further antibiotic therapies, and offers numerous adjunctive therapies to help get the body’s “terrain” back in balance. This is very much an individualized approach, so you won’t find any set protocols for all patients. It really depends on the person’s unique pathogen load, whether they have tickborne coinfections, a history of other infections (e.g., strep, pneumonia, dental infections, etc) and overall state of health.
Minocycline should be the core therapy for SD, simply because it has superior tissue penetration (more easily crosses the outer lipid layer of cells, as this class of antibiotic works on intracellular microbes) than the other tetracyclines. Minocycline is rather special, because it has numerous other immune-modulating properties that are particularly helpful for SD. It is a long-term therapy, however, and as a general rule, the first year of therapy is about slowing down the SD freight train, preventing progression, after which clear signs of improvement should be noted. If you’ve had a chance to read some of the SD stories on this site, you’ll get an idea of the very individual journeys people have taken to reach remission.
I am happy to share more about Dr. M’s approach to treatment with you and will private message (PM) you. Of course, deciding to fly cross-country at great expense is only something you can decide, so hopefully other SD/Lymies here will chime in to share their journeys with you. Hang in there Mom. Your head must be spinning, trying to wade through all the info and good-hearted souls reaching out on social media, but you’ll find it’s a pretty warm, calm forum here and a pretty rich archive of posts if you ever want to run searches on particular topics.
Is Dr. K not practicing in Texas anymore?
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, minoMWFHi Spiffy1, yes – no worries! Dr. K. in Lufkin, is still there. The ILADs referral system just doesn’t have that doc on their official LLMD list. To receive the “LLMD” designation, docs become affiliated with ILADs and receive their physician training.
Oh, that is good news. She has to cover a large territory!
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
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