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Introducing myself! I have had Lyme Disease for nearly 8 years, 4 of those undiagnosed because of NHS ignorance. Struggling to get treatment and have had to fork out a fortune for private treatment.

Then I got Subacute Thyroiditis from the Lyme, was told it would resolve in time. Still have a painful swollen thyroid 4 years on.

Lyme doctor refused to give me any more antibiotics after two and a half years of fairly conservative treatment. Had a gap of 8 months trying to find a new Lyme doctor, going downhill all the time. Started new anbx in Dec with new Lyme doctor eventually, and after 10 days had a severe reaction to them, shaking uncontrollably. Over the next week or so, also started reacting to paracetamol, probiotic pills, and Evening Primrose supplement. Lyme doctor said it may be Dysautonomia as it is common in Lyme AND in thyroiditis.

Spent Christmas feeling ghastly with just about every symptom on the list on this website, though not fainting. I think I may have Dysautonomia without any POTS. Also now have symptoms of Sjorgen's syndrome, to top it all.

Have made private appt to see the London neurologist, as can't wait 8 months to see him with my Lyme continuing to get worse. I work full-time and am the breadwinner for the family so need a diagnosis soon.

Gp had never heard of Dysautonomia. But my understanding is that if I can get back on anbx and attack the Lyme, the Thyroiditis and Dysautonomia will also resolve. So I need a route to de-sensitise my body so I can start taking medication again. Lyme dr says Immunotherapy to tackle allergies will help, but her quote for this is £3k for the first three months!!

Anyone had anything similar? Want to get well but don't want to be bankrupt or waste money on treatment that doesn't work.

The whole thing is ghastly!


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hi Allotmenteer, just wanted to say welcome!

I'm American but live in northwest England (currently in the States visiting family). I have had the same experience as you: I have yet to meet a GP who's even heard of dysautonomia, let alone neurally mediated hypotension. However, I've just recently switched to a new GP and surgery, and tho they haven't heard of these conditions, they are quite willing to at least acknowledge and learn. It makes all the difference in the world!

Unfortunately, I am not familiar with immunotherapy or thyroiditis. I hope you find some answers here. Welcome to the forum.

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Hi Allotmenteer, and welcome

Quite a story you have. I'm really sorry you're struggling with all these health issues, and on top of that you have to deal with the medical system as well. From what I read, there is a lot of controversy in the medical world as far as Lyme disease is concerned, and there are very few Lyme literate drs you can actually count on.

I am not in the UK, so I wouldn't know what to suggest in terms of drs or places to go in order to get some answers, but I've heard about dr Murakami in Canada/US - he is a retired physician who has been involved in Lyme disease for a long time, and continues to try to help people around the world for free. I'm not sure of the level of help he can provide, or if he has a long "waiting list" but maybe he can shed some light into your problems.

Here is his website: http://murakamicentreforlyme.org/About%20Dr%20Murakami.htm

you'll find there a lot of info on Lyme (not that you need any more of that) and his contact info. You have to basically complete a form and fax it to him. He will then contact you by phone, free of charge, on a priority sequence basis. Worth a try...?!

Also I recently read some testimonies from former Lyme patients that had all their other symptoms (dysautonomia, autoimmune, thyroid, etc) vanish once their Lyme was cured. Maybe if you get to the bottom of this, everything else will get back to normal as well.

I hope you'll be able to find some answers here on the forum, as well as the kind of support you are looking for.



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