LYME DISEASE OR THE GREAT IMPOSTER?

[Dustbuster]

March 09 had 6" characteric bulls ey rash. Lsated 5 weeks.  Had Western Blot at 1 week, non reactive.Treated with doxy for 10 days.( in hindsight - it seems test should have been done 3=2 to 3 mo after bite Also I'm on Celebrex, which could give false negative) in sept 09 long bone pain in shins. Sensations like a tuning fork  put on my heels causing vibrations up my legs.  Only relief was to rapidly wiggle my legs. Not sleeping.  DX with restless leg.  Mirapex made pain worse.  Extreme irritability and fatigue.  Mention to dr that something wrong with memory.  Husband worried.  He tells me things and I don't remember.  I notice that I will suddenly forget a word and compensate quickly by saying "you know".  Started having joint pain and knee pain.  Had rather surgery on left knee in Jan 2010.  In May have sever bone pain in legs.  Tested for bone infection.  Sed rate normal, Calcium, Vit jD, Vit B12 CRP, andMet Panel all normal, but TSH at 0.019.  CRP normal Oct 2010 bone pain now ine arms and numbness and tingling in hands and feet. Joints in hands stiff.  MRI on friday of Brain and lumbar spine.  Brain normal, Lumbar multil level disc disease L45-, L5-S1 herniation L4-5, L5-S1 foramina narrowing.  Saw internist today.  Wont treat me for  LYME or do another ELISA - says no lyme in Santa Barbara CO .  He did refer me to a neurologist.  Should I be treated regarless of test results. Should I have another ELISA or another test?

[gorbybelle]

Hi, I just wanted to say that I have had many similar 'rashes' as your picture - they were from mosquito/gnats - they were painful/itchy - my tick-bite never produced a 'bulls-eye' rash!

I have read that many biting insects can carry lyme.  My lyme symptoms started following the tick-bite - don't know if I already had 'dormant bacteria' from mosquito's/gnats.

Did you see a 'tick'.

[JackieCalifornia]

Owwie!  I never got a rash at ALL, so I can't say, but keep that photo.  Docs love show and tell.  

I didn't have any luck with endocrinologists or ID docs .... the endos know the thyroid aspects, but the ones I saw didn't know how to connect to the bigger picture of what was up with me.  I think I saw three of them, and one of them, very kindly, tested me for Lyme because she couldn't think of anything else to do.  The mildly positive results came back, but she assured me I could not have Lyme, because, as she said very sweetly:  "Oh, you couldn't possible have Lyme.  I have patients with Lyme, and they are all ... near ... death." Yeah, doc, if you don't TREAT them, they can be!  

I took that test result and found me an LLMD.  There is still much not known about Lyme and its systemic effects, but they do muck with the endocrine system.  

You might find an endocrinologist who is broadminded and has an interest in Lyme, but time's a-wasting, so I'd suggest you find an LLMD.  Stay in touch!  Be brave!

[Dustbuster]

I couldn't figure out how to upload a picture of my bull's eye rash, so I made it my Profile picture.  This was taken by my IM, I'm holding a tuning fork, for size reference.  This rash never itched, or hurt.

[Dustbuster]

Funny you should mention thyroid.  I've always been slightly hypothyroid.  , anywhere from 1.3 to 1.9 over the years.  Talked my gyno into giving me Armour thyroid, because I'm so exhausted all the time.  TSH dropped to to 0.2. and had remained constants. My bite was in March 2009, had TSH in December, part of routine physical, and it had jumped back to 1.8, despite being on Armour.  Gyno increased my dose, now when I went to IM last week for tingling etc, TSH at 0.01.  IM told me to back of the thyroid (which to me makes no sense, since I have symptoms of hypo not hyper).  I guess what you were basically saying is, not only see a ID doc, and Rhuem, but see  good Endocrinologist.  I guess they should rule thyroid problems out before giving me a DX of fibro, if they don't beleive I have lyme diseas.  Thanx for you input, you can't imagine how much I appreciate it.

[JackieCalifornia]

And PS about thyroid:  Lyme can affect the whole endocrine system including thyroid.  

I don't know if my thyroid problems started before I got Lyme or not, but I've recently started on thyroid meds and I'm very much better --- but that's different from the treatment for Lyme and the other diseases carried by ticks.

[JackieCalifornia]

Hi -- I answered your previous post that was made before you saw the internist.  I've pasted it below here, but the short answer is:  Lyme is everywhere, but the docs won't realize that.  Neurologists are often not tuned in either, but that's a gross generalization.  You might get lucky, but mostly neuros believe along with most other MDs that Lyme is hard to get and easy to cure.  

Your symptoms are not unlike what many of us have, and no two people get exactly the same symptoms.

I suggest strongly that you find a Lyme specialists.  There's more about that below here ======>

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By SB do you mean Santa Barbara County?  There is a Lyme doc in Malibu, I'll send you a private message with the name -- see the upper corner of your computer screen under the blue 'MedHelp' bar, and it will say "Inbox (1)" when there's a message there for you. Just click.

As to the doc's comments that "it would be rare to have an infected tick in this area" -- ROTFLMAO.  If only it were amusing.  

In your situation, I'd definitely see a Lyme specialist.  The tests are helpful, but only vaguely useful, and they must be interpreted by an MD who understands how to interpret them.  "Modern" medicine relies so heavily on tests as the absolute answer, but particularly with the two tests used in Lyme, a wise and broad-minded MD is needed to interpret them.  Unfortunately, even otherwise excellent MDs have been led astray by the dictates of the IDSA (Infectious Disease Society of America) which for political reasons has frozen its understanding of Lyme diagnosis and treatment at a primitive stage.  

You should probably also be tested for coinfections carried by the same ticks -- the prevalence it not certain, but I read that maybe half of all Lyme patients also have one or more coinfections, which must be tested separately and often treated with different meds than Lyme.

I suggest the ILADS [dot] org website, under the 'About Lyme' tab, and then go to Burrascano's 'Diagnostic Hints and Treatment Guidelines' if you are interested.  This is the more 'progressive' group among Lyme docs.

There is a California Lyme Disease Association (CALDA) which has a website and newsletter, fwiw.  There are also other websites you may find of interest:

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org ===> this is the CALDA website

But I'd start with ILADS.  Some of these websites have referral functions to help you find an MD.  Lyme docs fly under the radar because of possible harassment by local and state medical boards, but they are more open in California because of freedom of conscience under the law here...tho that doesn't mean nonLLMDs have open minds.  Infectious disease docs can be the worst Lyme deniers of them all, and non-infectious disease docs look to the ID docs for direction, so we end up going in circles ... it's the LLMDs who are scouting the way.

I have read (and believe from the experience of self, friends and family) that many of us have low grade infections with Lyme or something, and then there will be a catalyst that pushes the immune system over the cliff into florid symptoms, like a second infection incident.  Lyme is everywhere, no matter what the IDSA says -- ticks can't read maps after all.  

(fyi, the IDSA and CDC set up surveillance standards to track the spread of Lyme some years ago, and to ensure the integrity of the data, the bar was set very high to qualify as a confirmed Lyme case ... then the IDSA adopted those surveillance standards as minimum *diagnostic* standards, leaving many very sick people undiagnosed because they never saw a tick or a rash.  LLMDs, or MDs who take a broader view of Lyme etc. diagnosis and treatment, go the other way and diagnosis and treat based on the admittedly lousy testing combined with a careful clinical review of history and symptoms.)

btw LLMD is slang and not a professional qualification for a broadminded doc, a 'Lyme Literate MD'.  

In your situation, I'd get me to an LLMD asap, taking copies of the tests you have had done, get a thorough exam and history, and go from there.  I went through 20+ docs before getting diagnoses with Lyme and a coinfection, was getting well when I got bit again with a different coinfection, so this is a never ending battle considering Lyme is everywhere.  You hang in there, let us know if we can be of further assistance.

If you want to understand the big picture of Lyme, I highly recommend 'Cure Unknown' by Pamela Weintraub.  now in paperback ... she's a trained science writer whose family got Lyme, and the book weaves personal stories with the travesty of science that hte IDSA has in place.  It gave me comfort to understand why the 20+ docs turned me away as they did.

You are doing all the right things, particularly in being persistent.  Let us know if we can help further.

Best wishes --