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» LymeNet Flash » Questions and Discussion » Medical Questions » Awaiting diagnosis

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Author Topic: Awaiting diagnosis
armchairangel
Junior Member
Member # 28409

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I'm fairly certain I have lyme. I had a rashless tick bite about 20 years ago. For the past 15 years I've had chronic pain and fatigue, coming to a head about a year ago, resulting in a fibromyalgia diagnosis. I've had what I thought were little flares throughout the whole year until now. MONSTROUS huge flare that is worse than my initial fibro dx flare, and I'm on pain meds.

Now, after my pain doc recommended seeing a rheumatogist to be sure that fibro is all I'm dealing with, through talking with some people, and thinking about the past 15 years, I think that its probably lyme. I've been reading the Burrascano guide and it all sounds way too eerily familiar. Today I went through his symptom list and out of the 62 listed symptoms and groups of symptoms, I only answered no to 15 of them. Of the 47 that I do experience, only 16 I consider mild or occasional.

I have an appt on the 21st with a rheumatologist who has lyme disease listed on his personal info page under special interests. I'm planning on calling the office tomorrow and asking someone a bunch of questions to see what sort of approach he takes.

I know its a bad question, but I'm wondering what others think of my fit with the Burrascano guide. Is it pretty dang probable and should I chase the diagnosis?

I'm actually pretty tempted to ask for a giant round of abx and see how I react to it. I'm planning on taking the whole 37 pages of the B. guide with me and showing him the symptom pages and where I sit on it all. It kind of seems like a no-brainer to me though.

I'm having a really hard time not thinking about it before my appt even though there's nothing I can do to start helping me get better.

I'm also concerned about my 2 year old daughter considering my bite was so long ago and I've been feeling terrible for forever. She has crunchy shoulders and knees and a little heart murmur.

Anyway, sorry for the babble but I think everyone probably understands...

Posts: 8 | From Twin Cities, MN | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I had it for 42 yrs before being diagnosed...so it is VERY possible for you to have Lyme and VERY probable too.

I'll be back tomorrow to check on you!!!

see this site:

www.roadback.org

Plus.. I really would pass on the rheumie unless you find out he really and truly treats Lyme disease long term.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95723 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
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I agree. I do not see a Rheumy treating you for as long as it takes to get you well. I would seek a LLMD to help you. You can post over in Seeking a Doctor section for help.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
Hoops123
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I brought the Dr B checklist to me for my first LLMD visit and to my surprise, that exact checklist was given to my by the office staff to fill out with my paperwork.
Posts: 749 | From State full of ticks | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
lou
Frequent Contributor (5K+ posts)
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Most rheums are clueless, so the chances are not good. This might be an exception, but you should really check with support groups in your state before you waste your time and get trashed. This is hard on a person and takes up valuable energy.
Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
armchairangel
Junior Member
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Well, I called the office of the rheumy to see exactly what he meant when he listed lyme disease under his special interests. I got the run around and eventually was able to talk to one of the nurses. He didn't know anything. *shrugs*

I think I'm gonna keep the appt, if nothing else to get another huge panel of bloodwork done to rule everything else out again and make sure there's nothing else besides the fibro and lyme.

I'm going to keep looking for an LLMD in the meantime. My husband talked to a dr well-known in the local area for her activism with lyme. She gave us the name of a good dr nearby. I called over lunch hour and got their answering machine. Of course, now its after business hours, so I'll have to try again tomorrow.

I also called Igenex to send me a testing kit that I can take with to my appt so I'm sure I get the right tests. It should be here in 2-5 business days. Plenty of time before my appt!

Now we're just trying to get our ducks in a row in terms of help for while I'm in treatment. Yanno, rallying up the family and friends to all pitch in with childcare (we have a 2 year old), keeping up the house and meals so my husband doesn't lose his job.

Posts: 8 | From Twin Cities, MN | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Pinelady
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The tests will not work if you are not producing antibodies.

So if it shows nothing don't take it as writ in stone that you are neg.

Many have to challenge by taking antibiotics and killing some first to get any bands to show in the test...

I did for 3 months to get what I got. Always get copies of all tests results as my doc tried to tell me I was neg...

When clearly I was not.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
littlebit27
Frequent Contributor (1K+ posts)
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Agree with Pinelady. My first WB was almost completely neg, only band 41. Second WB was Igenex Pos and that was after the abx challenge.

Good Luck

--------------------
*Brittany Lyme Aware on FB*
http://littlebithaslyme.wordpress.com/

Posts: 2310 | From Southeast | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
   

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