Lyme Disease Help!

[jenn467]

Hi, I recently went to hospital with suspected Lyme Disease.  I was refered during a routine appointment for a thyroid check up.  I had a rash on my forehead and crippling pain in my shoulder, hand and knee.  Within a week I was almost imobilised.  I had n't felt fluey or but I ws extremely hot sometimes and felt like was geting a migraine but didnt.  Apart from that fine until the arthritis started.

I had been in the new forest twice during the summer once in July and once August.  It was on 31st Aug I was referred.

I had blood drawn and xrays and was sent home with doxycyline, prednisolone and diclofenac.  After a week or two the arthritis started to get better but I was still tired all the time.

The discharge letter said that they were waiting for the serological test for Lyme but this could take 3 weeks.  After 4 I called and they said they didnt have them.  To cut a long story short, I received a message saying that they didnt feel that it was necessary to send over the test as clinically they didnt think they needed to!!!!!!!!

I am shocked.  I was treated for it, signed off of work with suspected lyme disease and no one saw fit to send the test off.

Basically I wondered if anyone else has experienced anything like this?

Appreciate any responses

Jen

[jenn467]

Hi Jackie

Thank you so much for your response.  I will check out the MDs in England.  I am really shocked by all I am starting to read.  I had absolutely no idea how dismissive the medical profession are of Lyme Disease.

Thanks again

Jen

[JackieCalifornia]

Oh my, sorry to hear all of this.

There are MDs in the UK who take Lyme more seriously, and I just googled 'england lyme disease' and got some very good leads.

Lyme is a tricky infection, and can also be accompanied by other diseases that may not be susceptible to doxycycline, so can't say for certain whether another test would be affected by the doxy.  

Not everyone gets a rash or sees a tick, perhaps only half of us, so that is no sure indicator.  And the tests are very poor, not sensitive and not particularly accurate all too often.  

Mainstream medicine sees Lyme as a minor ailment easily and quickly cured, so finding a Lyme specialist would be my recommendation.  They often do not advertise themselves as such, esp. in places where the gov't sets diagnosis and treatment standards.  There is more leeway in the US for docs to treat acc. to conscience, but it varies here from state to state.

I'd be a bit concerned about the prednisone is sounds like you were given.  It suppresses the immune system, as I understand (not medically trained here), which is the opposite of what one would wish in a bacterial infection like Lyme.

Doxycycline is the traditional treatment given for Lyme, but the standard in the US of a couple of weeks' worth of it often is insufficient, due to particular characteristics of the Lyme bacteria.  Would an additional test be affected by the doxy that you took?  If you are very very lucky, it may have cured it, but I wouldn't assume so without confirmation from an MD who understands Lyme as a special case.  Would the doxy change the test results if you have them redone?  Perhaps, I don't know.  What is important to note is that the tests are VERY inaccurate and of poor quality, so the best thing to get is a new MD who understand all this about Lyme and will take your history and symptoms and test results all into account.

Time is very important -- the faster you move on this, the more likely to be cured and cured quickly.

Best wishes, and do go search for a Lyme specialist -- they are out there, they just keep a low profile.  Let us know how you do.

[jenn467]

I forgot to mention that I had a massive .... what looked like a bruise .. on my foot where i think the tick bite had been but when I arrived at the hospital (with ugg boots on) I didnt have any clue what lyme disease was and no idea that could have been the tick bite.  They asked if i had any other rash apart from on my head.  If I had known I could have shown them.  No doubt in my mind now that it was Lyme Disease and I also wondered if another test is carried out will that be affected by the doxcycline it have taken.

thank you :-)

Jen