Can Lyme activate connective tissue disorders? (EDS, Marfans...)

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Sean.scott787
Regular Member


Date Joined Jan 2016
Total Posts : 287
   Posted 1/29/2018 5:23 PM (GMT -6)   
Several doctors believe all my issues are from having a connective tissue disorder. The main one suspects loeys dietz syndrome which is similar to EDS but can start at anytime during ones life. I have several physical characteristics of connective tissue disorders but I never had a single joint, muscle, or tendon pain until I got sick 3 years ago.

I'm wondering if lyme can activate one of these disorders? And if so would you be stuck with if for life since they have no cure? Most of my symptoms are joint related and I'm steadily deteriorating. I'm just trying to find some answers since none of my lyme treatments seem to be working.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 1/29/2018 5:32 PM (GMT -6)   
Seanscott - We had a discussion about EDS and Lyme - here’s the link to the thread:

/www.healingwell.com/community/default.aspx?f=30&m=3945159

My son had hypermobile joints - but after being diagnosed with Celiac and going off gluten - eventually his hypermobility ceased.

Many years later - no joint issues.

So it’s possible that if Lyme is the cause and you treat Lyme and co’s effectively - your joiints wont be deteriorating anymore - but maybe damage done might not repair
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 1/29/2018 3:37:43 PM (GMT-7)


Sean.scott787
Regular Member


Date Joined Jan 2016
Total Posts : 287
   Posted 1/29/2018 5:37 PM (GMT -6)   
Yes I was hoping to hear from more people or perhaps new information. I'm getting near the point where I don't want to live so I'm pretty desperate.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 1/29/2018 5:38 PM (GMT -6)   
Have you had any improvements with some symptoms with treatment?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Sean.scott787
Regular Member


Date Joined Jan 2016
Total Posts : 287
   Posted 1/29/2018 5:49 PM (GMT -6)   
No, antibiotics helped a little but I had to stop because of severe GI problems. I've been doing herbals and Bee venom therapy since then and only getting worse.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/29/2018 6:01 PM (GMT -6)   
Here's an article that you may or may not have seen before that does talk about this:

" In the case of ligaments and tendons, collagen and elastic fibres predominate structurally. They are also the structures that are targeted by Borrelia."

/www.ncbi.nlm.nih.gov/pmc/articles/PMC3751012/

Depending on exactly what your symptoms are, it's likely one of the diseases that is often misdiagnosed instead of Lyme - unless your testing leaves no doubt.

Symptoms
Early indications of mixed connective tissue disease can include:

General feeling of being unwell. This malaise may be accompanied by increased fatigue and a mild fever.

Cold and numb fingers or toes (Raynaud's phenomenon). In response to cold or stress, your fingers or toes might turn white and then purplish blue. After warming, the fingers or toes turn red.

Swollen fingers or hands. Some people experience swelling to the point where the fingers resemble sausages.

Muscle and joint pain. Joints may become deformed, similar to what occurs with rheumatoid arthritis.

Rash. Red or reddish brown patches may appear over the knuckles.



I've had every one of those symptoms, and never had anything other than Lyme and company -although I have been evaluated for RA due to my fingers and toes twisting and turning.

What I'm saying is that Lyme is an ongoing infection, while these others are conditions we have to live with. Just be sure that they present you with very solid proof that you have these conditions and they aren't caused by Lyme and company, as mine have been.

If your protocol isn't helping you, then find another one to use. Not every protocol is right for every person.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Eiren
Regular Member


Date Joined Aug 2017
Total Posts : 58
   Posted 1/30/2018 1:29 PM (GMT -6)   
Yes, this is something I'm dealing with.

My symptoms, starting a few weeks after my initial doxy Rx, started with tendinitis in my hand.

I'd had tendinitis in it before, so it initially got waved away advice to rest it. I rested and it spread.

Along the way it was noted that I had hypermobility in my fingers. I've never thought myself particularly flexible (even with years of gymnastics and ballet when I was young), so that was a bit of a surprise.

So now, what? I obviously had Lyme, that's all noted in my medical file. So is it still Lyme? Well, my regular GP is hesitant about that, but it's clearly something. So what is it?

It's been noted by good (regular) authorities that Lyme can trigger peripheral neuropathy. So perhaps it can also be noted that Lyme triggers MCTD.

If you look at the various types of joint and tendon disorders it is usually noted that they can be caused by HIV or syphilis or chlamydia or malaria or whatnot. It's not much of a stretch to add Lyme to that list.

MCTD is a name. And is more descriptive than PTLD for me. It's a name that can be put in my medical file and I can take to specialists and physical therapists.

Maybe as I treat Lyme the MCTD will also resolve. Maybe not. I don't know yet.
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