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

Yesterday I had my appointment up in London with my neurologist. I had been really looking forward to this appointment, as I wanted his opinion on a couple of things. Firstly on my new leg spasm and if there was any treatments he could suggest that could help it. I am taking 45mg/ml of Baclofen a day for it and whilst this is controlling it, it impacts my cognitive ability greatly. I am able to hold a conversation but anything that requires me to start actually using my brain and answering questions is too much and I am unable to do so, I end up relying on my mum or whoever is with me at the time to do so for me.The second thing I wanted his opinion on was on a type of splint that my physios are arranging for me to try called Second Skin. It’s a lycra based splint that provides  feedback to the brain, and it seems to work either really well or not at all.

For my leg he had no idea what to do other than keeping me on the Baclofen.  He is referring me for more intensive physiotherapy to see if that will help but other than that he was lost for ideas. So I guess all we can do is hope that these new splints when I try them work, because otherwise I do not know what to do. In regards to the splints he did not say too much, he said they could do no harm which is always good to know and that they may help but didn’t say much more on the subject.

The main reason I had been looking forward to yesterday’s appointment is that in a letter I had received from my neurologist the other week he had stated in it that he hoped to have an answer for me about my IV treatment for Neurological Lyme Disease by the time he next saw me. I took this as a positive statement when I read it as recently in conversations with my doctors it had all been looking like it could go ahead if someone could be found to oversee it. Sadly this is not this the case. The hospital that originally said this can be set up if you find a neurologist to oversee it, is now saying they want more evidence that I have Lyme. By evidence they mean a positive Lumbar Puncture result.

My neurologist has said that he can arrange for me to have a Lumbar Puncture very quickly and it is up to me whether or not I agree to go through with it. He is not very happy for me to have one done as it puts me at risk of developing new symptoms or my current symptoms getting worse. There is also the problem that I cannot actually guarantee I can stay still due to body spasms so for them to realistically be able to do the Lumbar Puncture I would have to be under a General Anesthetic. The tests for Lyme Disease are also extremely unreliable giving false positives and negatives, and with a years worth of oral antibiotics in my system its more likely to come back negative.

I started taking oral antibiotics for Neurological Lyme Disease this time last year, and we have battled for the correct treatment which is IV antibiotics for the last year. For a whole year I have been put under the impression that I would get IV it would just be a bit difficult to set up. Now I am extremely upset. All I have done since I left the hospital yesterday is cry on and off. The IV would not cure my Dystonia but it would cure my Lyme, and who knows how much of my body is that! I had all my hopes pinned on this!! I am terrified that now when they take me off my oral antibiotics, which I know will happen soon, that my symptoms like my hand spasms, that improved may come back. I could not cope with that!

My plan today is to phone a local private hospital that I know treat Lyme Disease and see if they will consider treating me without the Lumbar Puncture. If they won’t then I will have the Lumbar Puncture done as I would rather risk it and hopefully get treated then spend my whole life wondering what if I had done it.

I am feeling very lost, and sad right now and I know things can only get better. It’s just hard after spending a whole year having all my hopes pinned on this treatment to have it snatched away. On a positive note I did get my injections done, and he was so lovely and apologetic. I am lucky that I have him. I  just have to struggle on.struggle

 

Comments on: "Disappointed & Disheartened" (2)

  1. Hi sorry to hear your problems but your experience is like so many others. A lumber puncture for Lyme Disease is only a very small percent chance of picking up the infection even if it is in the body – haven’t time to look this up but about 11% so is it worth such a risk. Then what would NHS give in the way of IV well currently they say two weeks maximum so again is it worth it for so little IV.

    Dystonia can actually be caused by Lyme Disease as I am sure by now you know. Not sure what order you suspect the two illnesses but many of us realise that we are often ill from earlier tick bite before further ones project us into worse health.

    NHS have their heads in the sand with Lyme and so there is not one Consultant I have heard of yet in NHS who has a clue about Chronic Lyme and how to treat it they all follow PHE who are in process of updating their guidance since James Lind Alliance found so many uncertainties that they base their guidance on. So don’t hold your breath for any helpful treatment for Lyme on NHS in near future most doctors will say they don’t accept that Chronic Lyme exists!

    Good luck in finding someone experienced in treating Lyme disease and then you might just find some of your dystonia symptoms improve too as others have found.

  2. Hi. I have focal dystonia, organic, over-usage associated, and parkinsonism. I just started having leg spasms and jerks these past two months. Also leg and toes are cramping which started a few months ago. Went to my neurologist, and he couldn’t tell me what is causing the problems in my leg(s) and feet. Said he is still scratching his head over this. I was very frustrated and distressed as I don’t know if the leg thing is myoclonic dystonia (which would be hereditary, and there is absolutely no one my family with this now or in the past) or myoclonic Parkinsons. Or if I’m just plum crazy. But he did increase my medication quite a bit, and it’s helped the leg issues and toes, considering it’s only been a week. I am taking Artane, and I don’t seem to have any side affects. He said he may try me on Baclofen if the Artane does not work. Maybe I should be having some physiotherapy? Have you tried Artane? Did you doctor diagnosis your leg symptoms? I am looking forward to hearing how your leg splints work. I wish you well in receiving your lumbar punch and moving forward with a diagnosis in order for you to make some plans proactively with your treatments.

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