Don't want to be here, But I am here...Hello

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maunsie
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/21/2010 11:20 AM (GMT -6)   
Hi all I am new here. from uk
 
my poor husband got a very suspicious lyme rash 6 years ago (before we had internet so was never able to find out how bad this could be).
 
Went to the doc with the rash - she suspected lymes - but opted for blood tests and a weeks worth of anti B's. - Then a second blood test - Both were negative - so doc never persued any more treatment.
 
6 years on and symptoms are extreme fatigue, achy muscles, brain fog, loose bowels, headache.
 
Another anti-body test taken - which were away at 2 labs for 6 weeks - all came back negative, but somehow I don't believe it - The doc thinks we are barking up the wrong tree.....and should forget the lyme issue.
 
I so confused - we will get further confirmation on those tests in next couple of days - I need to know the facts so I can put this behind me? or not??
 
Anyone give any helpful comments?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 1/21/2010 11:37 AM (GMT -6)   
Hi Maunsie!
So glad you found us! Although I'm sorry you have a need for this site. Please, please go to the sticky at the top of the forum (New to Lyme? Start here) & read, read, read!! You have to be your own advocate when any tick-borne illness is suspected.

I didn't test pos. until AFTER I had been on strong abx for a full yr. Lyme & other TBI's (tick-borne illness) can literally hide in the body & avoid detection. Even the U.S. CDC says that LD needs to be clinically evaluated, which most docs won't do.

I do fel the need to point out that the UK can have a different strain of Lyme than those of us here in the U.S. can be infected with. There are a couple of websites based in the UK that will undoubtedly have info specifically for those strains.

BUT!!- don't run off from here, as I'm sure you will find a great deal of info that is useful, as well as support & understanding!!

There are actually very few docs that have any clue about Lyme Disease - even though they are quick to tell you that they DO know!

IMHO- If , after doing some reading in the 'New to Lyme" sticky, & maybe use the search option - you find that you do have reason to suspect LD &/or other TBI's, that you not allow yourselves to be pushed aside.

Please, please read, read, read!!! You HAVE to be your own advocate if you suspect Lyme.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


maunsie
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/21/2010 11:48 AM (GMT -6)   
Hi - Thanks

They tested the blood here for the anti-bodies - which they couldn't find. They weren't testing for the actual bacteria which I gather can hide within.

I really want to believe my GP - but Gp said he could ty and get an appointment with rhumatoid specialist with an interest in Lyme.

The best offer we will get perhaps?
But doc is pretty sure - No lyme infection.

Do I believe the doc? - that is my big question - I'd love to forget this whole thing>! and move on to find treatment for the symptoms.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 1/21/2010 12:58 PM (GMT -6)   
That's a hard question to answer, for I am not medically trained. Honestly, I believe only the one who lives with it can really say whether or not to pursue a dx. There are docs in my area that will tell their patients to take a wait & see approach to a picture perfect EM rash & when it disappears, the patient is told & I quote, "See?? The rash is gone. It wasn't Lyme disease!" Makes me ill every time I think of it!!!

I does sound like you will need to go to another doc no matter what - LD is SUPPOSED to be clinically dxed - even if the blood work doesn't support it. That's what happened with me. I chose to pursue a dx - good thing too, as that IS what is wrong. It was the only thing that explained practically everything that I was having to live with.

As I said earlier - I had to be on a high dose of Minocycline for a full year before I ever tested positive! Although there are other conditions that could explain your hubby's sx as well - such as low thyroid function or Hashimoto's Thyroiditis - which I have & meds have helped. There are websites with a "symptom checker" that can help to get you started.

Please go to the sticky at the top of the forum "New to Lyme? Start here." and find the symptom list. Go over it with your hubby - if he is experiencing quite a bit of those symptoms, I would suggest that you hang in there until you can find a doc that will help you. A lot of us "Lymies" have to go that route in order to get any treatment.

Hope this helps some. =)
Trav
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


maunsie
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/21/2010 1:59 PM (GMT -6)   
He has had his thyroid checked - nothing is showing up. - Also - cause the origianal doc thought it to be lymes rash - but didn't give antibiotic treatment but opted for the wait and see and blood test option- does this mean they mis-treated - do we have a case to sue?

thanks for your time

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/21/2010 4:37 PM (GMT -6)   
maunsie,
Welcome to Healingwell. Sorry you are dealing with Lyme disease issues. Traveler has given you some really good advise!! Many of us affected with Lyme do not, or did not show positive early in our infection. The best way to find out if you, or your husband has Lyme disease and/or other co-infections is to see a Lyme literate doctor (LLMD). There are LLMD's in the UK, and Europe, but not many.

To find doctor referrals, and others in the UK try...

http://health.groups.yahoo.com/group/EuroLyme/

Does any of this sound familiar?

http://www.lymediseaseaction.org.uk/story/gill_reese.htm

You can also research at ilads.org

Best wishes

Post Edited (Cheezhead) : 1/21/2010 3:49:52 PM (GMT-7)

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