I posted a topic a while back regarding my skepticism about my recent diagnosis of Lyme disease. It's not that I am skeptical that I have the infection really, but rather I think that most of my symptoms are caused by thoracic outlet compression and an elongated styloid process.
I am relying on family for assistance while I am being treated since I cannot work. Like I said in the previous post, I have been diagnosed with vascular thoracic outlet compression since 2008. I have had extensive studies done and many doctors who have corroborated this diagnosis. I don't want to go over my entire history again in this post.
They have recommended decompression surgery given the extensive compression and backed up blood flow and circulatory problems in my head, neck, chest and arms.
My parents are very stubborn and they believe that ALL my problems are related to Lyme and nothing else. But I cannot see how this can be the case. I have now been working with two lyme literate doctors for seven months and I haven't noticed any change or improvement and I have been perfectly compliant. I have done everything right, my diet is excellent, I have been taking the antiobiotics every day and a couple dozen other herbs and supplements and I have been exercising as much as I possibly can. And I had previously worked with a lyme literate doctor who suspected I had lyme a couple years ago. I worked with him for seven months or so and I didn't notice any changes either.
I need to know whether or not it is advisable for me to go ahead and treat the thoracic compression or whether you think these symptoms are or could be related to Lyme? I have read a lot of the literature on Lyme and I haven't heard of the sort of impingement problems that exist with vascular TOS.
I had two extensive workups with Dr James Collins, who is probably the worlds expert in diagnosing thoracic outlet syndrome. He works at UCLA. The MRIs take almost three hours to complete and then he spends another three hours going over the results of the tests in great detail.
I would greatly appreciate it if you could look over this report that he made about the findings of those tests he took and tell me whether this has anything to do with Lyme disease and whether I should feel confident in treating it ASAP?
I have already asked Dr G, who is a lyme literate doctor, whether it is okay to have the recommended surgery to correct this problem, and he said it is okay. My parents are under the impression though that he is just protecting himself so he doesn't get sued if I die or something like that. Though he was very clear that he thought that vascular TOS is quite separate from Lyme and needed to be treated as a separate entity entirely.
I really appreciate the help.
[ 10-12-2014, 12:15 PM: Message edited by: faithful777 ]
Posts: 6 | From California | Registered: Aug 2014
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I can't open that link/report. Can you copy and paste it here so I can read it?
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
The Eagle syndrome problem is a little bit more speculative. I have pain when turning my neck and pain around my hyoid bone. However, it is very difficult to definitively prove that there is compression from a Styloid process. Usually they just see whether or not the bone is longer than "normal" and if you also have symptoms that COULD be caused by compression. They they remove the bone and see if you feel better.
The TOS is far better understood by doctors and more conclusively proven on radiology studies. It may be that TOS is the main problem.
I'm just trying to figure out whether or not Lyme disease has any relationship to thoracic outlet syndrome or vascular compression? I've not heard anyone say that it does, in fact most have said the opposite.
Is it possible for other conditions to cause a low CD57 score? I'm just wondering whether the vascular compression problems caused by TOS could be contributing to abnormal bloodwork that is causing some doctors to overemphasize the Lyme problem?
And on a completely separate note, have any of you ever tried prolotherapy for joint pain caused by Lyme disease? I have used it with some success several years ago, but this is way before anyone suggested I had Lyme.
For those that don't know, prolotherapy involves injections into joints and soft tissue areas. It causes collagen growth and strengthening of tendons and ligaments. It can cure many types of chronic pain.
Has anyone had success with using this for Lyme related joint pain?
Thanks.
Posts: 6 | From California | Registered: Aug 2014
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi jrodfeld...
Your report says your symptoms began around 2004 when you fell and injured your neck.
Can you elaborate on that?
What exactly in your history/symptoms/testing, etc., alerted your parents to consider Lyme disease?
Posts: 2072 | From Earth | Registered: Jul 2013
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