Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Whilst sitting in a waiting room the other day my mum stumbled across an article about Lyme Disease. Lyme Disease is carried by some ticks and can be transferred via a bite. Later that day my mum did some research about the disease after remembering that I had been bitten by one when I was six up in Scotland, and the area is known to have ticks carrying the disease.  When reading through the symptoms she found that the majority of medical issues I have had through out my life fits with Lyme Disease.

Lyme Disease can cause a majority of problems. In late stages of the disease neurological problems can occur such as muscle spasms, memory loss, twitches etc and can cause Dystonia. I was never tested for Lyme Disease at the time as my parents did not know of the condition. The tick was attached to me for 24 hours and I developed a large rash afterwards. Testing for Lyme is unfortunately not accurate. The tests can result in many false positives and false negatives, some Lyme patients have been tested over 5 times before they got a positive result. The test is only about 30% accurate.

I visited my GP this morning with my mum to discuss this with him. We went armed with information from medical sites, and prepared to fight for a test. Amazingly we did not have to fight! My GP listened to us carefully and decided that instead of ordering the blood test he would start me on a high dose of oral antibiotics instead. I am to take these for a month and see if I get any improvement.

From what I have read if you have late stage Lyme Disease IV antibiotics are the best line of treatment and this goes on for several months. Often antibiotics do not show any positive results for months, in some cases it has taken up to a year. I know that I am unlikely to have any improvement on just one course of antibiotics and that I may have to fight to get another course of them, but I am extremely thankful that he has agreed to put me straight on them.

The information I have read is extremely interesting and whilst there is a chance that I do not have Lyme Disease and that is just a coincidence that my symptoms through out my life fit so well, I cannot help but hope that we may just have stumbled across the organic cause for my Dystonia.

 

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Comments on: "Have we found stumbled across the cause??" (9)

  1. Wow, that’s really amazing.
    And that’s great that you’ve been put on antis straight away.
    I sincerely hope it works and you will gain some relief.
    Angie.

  2. Wow this is actually interesting to learn about. Although can all cases of Dystonia be linked to Lyme Disease? Would be interesting to see as there are many different types of Dystonia.

    • Hiya, I am not sure if all can be linked as in some cases the disease is simple mimicking the condition, but Lyme Disease can defiantly cause it especially in the late stages of it.

  3. Diane Garchow said:

    Interesting. I care for a young lady who suffers from dystonia. Hers is directly connected to the DYT1 gene. I am very excited to hear of the outcome of the antibiotic regimen.

  4. Elizabeth said:

    Very interesting. I just had broad spectrum antibiotics in hospital, we willl see what happens. It could be anything, one man wrote a book “blaming” mercury in teeth fillings. Very good writing and interesting.

  5. Dear Rebecca, I think every one has to investigate their premorbid history to better understand the probable causes that had influence in dystonia. In my case, in my family I have some relatives like uncles and grandparents who had Parkinson’s bad, I had problems at birth. I was born cyanotic. At my birth, doctors used the method forceps and really hurt my head. All these are determining factors for dystonia.

  6. Mary Lou said:

    Hi, my husband has Lyme Disease…and if you had a tick bite and a “bulls eye” rash, you were infected with Lyme Disease. It does not always show up right away, but can stay dormant in your body for a long time, maybe years, until something stresses your system, and it can attack that area, causing your symptoms. One dose of antibiotics taken within maybe 1 or 2 days of being bit with a tick with Lyme, can clear up the infection. But if it’s years…you will need years of antibiotics and it still may not help. What we have found to help most is “natural” antibiotics and herbs. My husband never had a rash, but just got sick..he thought he had a heat attack…and it took ONE YEAR for over 14 different doctors and in 4 hospitals to finally determine he has Lyme Disease…it mimics many other diseases. I wish you the best, I hope you can get more antibiotics or find a LLMD (Lyme Literate Medical Doctor) who will help you.

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