posted
Hey Folks, It has been about 5 year check-in. has lyme for about 35years.
I am 46 now. Was told I would never get out of bed. Blah Blah Blah
Fought for treatment got 2.5 years of Orals. Thank you Dr. D.
I then moved to Florida as Boston winters were brutal and the warm weather has helped so much. I was also able to 8 Months IV rocephin here. Thanks Dr. H.
Here is my question... After 1 year of Phyisical therapy.
My Hip pain is gone via PT. but this led to some neck issue's was diagnosed as having 2 Cervical spinal cord stenosis. Also have a thoracic spinal cord stenosis.
As PT has continued I am falling apart. jaw pain, wrist pain, elbow pain, knee pain and back. haha
I realize the treatment, prolo therapy and plasma therapy is bringing my central nervous back on line.
X rays show my bones are fine. However ultrasound and mri show torn ligaments and cartiledge damage.
I am now being sent to Rhumatolgist for evaluation for connective tissue disease.
I really amazingly better. Out of bed but still need some detailed cleanup of lingering joint issues.
Does this sound familiar to anyone? Finally started treatment in "05"
Take care
**edited names of cities**
[ 06-05-2011, 10:07 PM: Message edited by: Lymetoo ]
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
Ruematoid ra and lupus... not really expecting to see much. But if I have to have surgery on these elbow tendons they tall me look like beef jerky under ultrasound. Take them to dear friend pathologist in Boston. he is a genuis. i want the on slides. Haha I will do it.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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TerryK
Frequent Contributor (5K+ posts)
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posted
I'd be careful with your tendons and ligaments. I don't know if everyone with lyme has issues with them but I know I do and I figure at least a percentage of lyme patients do since lyme affects connective tissue.
I fell last year and broke and dislocated my finger. It was a serious injury. I told the surgeon that my muscles, tendons and ligaments are not normal but he didn't believe me until after he opended up my finger. He said everything that could go wrong went wrong.
The PT stretched my ligament permenantly and even with another surgery it could not be repaired. I consulted with a prolotherapist but they said they could do nothing for me because my finger was so messed up. Now my finger is twisted as a result of the stretched ligament and it will not bend. The PT kept assuring me that it was impossible to do any damage to my finger by bending it really far during the course of the therapy but that simply was not true for me.
They don't know why my finger will not bend by itself now. I can only bend it if I bend it with my other hand. I think they damaged something with the PT.
Personally I would stop the PT and get to an LLMD for help in figuring out what is happening. Ask your LLMD if you need to see a rheumatologist
Best wishes, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Thanks for your perspective. My LLMD is part of the Team making these decisions as well as what I feel my body can handle.
At one point I was missing 13 of the 16 reflex points throughout the body.
I have not felt this alive in 17 years. My CNS has suffered severe insult and seems to be flickering on again. How can I have torn elbows ligaments when I have done nothing?
the only thing we have done is massage and E-stimulation. I have never lifted a finger at physical therapy.
Once the stiff neck and headaches were better. Suddenly by elbows ached, again after doing nothing.
My docs believe they have been torn for years. it is just now as the CNS is coming back that the pain message is now getting through to the brain.
I will continue ahead with the Prolo therapy injections and soon plasma injections to rebuild damaged cartliledge and tendons with these injections.
I also get my neck put in traction to hopefully straighten out my 3 spinal cord stenosis.
Not ready to make nice with Lyme or Bush... it can go to hell and I will kick it all the way there!
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
My injection never have any steroids. They are homeopathic with good things and things to stir up the pain and thus the blood flow to the area of injury and surrounding tissue.
After 3 injections at each site. 4 in total neck. back 2 places and elbows now.
They will take my blood spin it to plasma and begin injecting my own plasma in my joints cartiledge and tendons.
Had this done for a toe bone spur. Worked amaxing!!!
But never steroids.. no no never!!!
My Testosterone was in the tank so I do do shots as well as being for low thyroid. Lyme has kicked my ass! I am finally starting to kick back.
I was bedridden and pooping myself 5 years ago. The fact that I can walk and sleep with no pain in my hips is no short of amazing!
We are all built so differently and have many different and mutant strains of Lyme. None of us present the same. So our path out of this hell will also be different.
I wish you all the courage you can muster to say the hell with Lyme. I am still here...
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
From what I understand all strains would likely affect connective tissue. Buhner wrote in his book "Healing Lyme" that borrelia swims through the tissues liquifying and eating our collagen. Collagen is the main component of connective tissue.
It's great that you are so much better! I too am much better after 5 years of treatment but still have a long way to go.
Thanks for your well wishes. I'll never give into lyme. Will fight to the death if necessary.
Hang in there. I hope you get some answers soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Have you checked out the website www.roadback,com? It's foundation is that most autoimmune disease is based in infection. It's premise is low dose antibiotics, but over the years now encompasses everything including lyme.
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