Aa
Aa
A
A
A
Close
1495274 tn?1289739272

LYME DISEASE OR THE GREAT IMPOSTER?

In March 2009 in had a 6 inch characteristic bulls eye rash.  It had a calloused dark red center, then clear, then ringed with solid red.  Raised, but not itchy or painful.  Lasted about 5 weeks.  Saw my internist at week one.  He order Western Blot, which was non-reactive.  So didn't treat.  (In hindsight- after doing some research- It seems as though this test should have been done 2 to 3 months after the bite.  Also I am on Celebrex, which could have given a false negative).  In Sept 2009 I began to have long bone leg pain in my shins.  It feels like someone has taken a tuning fork and put it on my heels causing vibrations up my legs.  The only way to get relief is to rapidly wiggle my legs.  It was keeping me up at night.  I mentioned this to my sleep apnea doctor and he thought maybe restless leg and put me on Mirapex, which made the pain worse.  I notice I was irritable a lot and taking naps often - thought maybe because I wasn't sleeping well.  Mention to Dr. that something is wrong with my memory.  My husband is worried.  He tells me things, and I don't remember.  I notice that in conversations, I will suddenly forget a word, and compensate quickly, by saying "you know".  Started having joint pain and knee pain.  Had arthroscopic surgery on left knee in January 2010.  In May 2010 had severe bone pain in legs, thought I might have a bone infection from the surgery.  Sed rate normal, Calcium, Vit D Vit B12 CRP and Met Panel all normal, but TSH at 0.0.19. CRP normal October 2010 bone pain now in arms and numbness and tingling in hands and feel.  More headaches lately. Noticing how the joints in my hands are stiff and I am having trouble getting out of bed in the morning - very stiff.  I have also become incontinent in the last month. Saw Internist last week.  Ordered MRI of brain and lumbar spine  Normal non-contrast MRI of Brain . Multi level disc disease and facet arthropathy of spine. Moderate stenosis L3-4 L4-5. L5S1disc herniation L4-5L5-S1 moderate foramina narrowing.  
I have a follow up appoint today with my Internist.  When I saw him last week, I don't think he remembered that he had seen me 18 months ago for the RASH.  I don't think he was thinking about Lyme disease.  There have only been a handful of cases in SB county.  I have a show dog who sleeps on my bed, but he wasn't at a show in March.  I hike 3 days a week in the mountains, but have been told it would be rare to have an infected tick in this area.  Based on my symptoms, which seem so consistent with Lyme, should I have another ELISA or should I have some other more definitive test?  Should I be treated regardless of the test results, based on my symptoms?  What other diseases should we be looking for?  I would be happy to send you a picture of the rash.  Is there a specialist in So Cal that I can see?  Are there any clinical studies I can participate in?  I am in constant low grade pain/discomfort.  I am very motivated to resolve this condition.  I appreciate your time and consideration  
4 Responses
Sort by: Helpful Oldest Newest
Avatar universal
(sorry if this is a little disjointed ... I got interrupted a few times and don't have time to reread just now, so sending in its rough condition)
==============================================
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 --
Helpful - 0
1495274 tn?1289739272
Jackie, Here's some new info.  Would like feeback from any and all.  Thanks.
Went to Urgent Care because of pain in legs, and I wanted a second opinion on the my idea that I had lyme disease, (Instead of carpal tunnel in my hands, and a pinched nerve in my back - as my IM was diagnosising me as having).  The Urgent doc took one look at the picture of my bulls eye rash from 18 months ago, listened to my symptoms, and put me on IV Rochephin until the lab tests came back.  On Saturday the IgG and IgM came back normal.  Protein electrophoresis also normal.  Because they were negative, the Urgent Care doc took me off the Rochephin and suggested followup with Neurologist,. Saw Neurologist, he says Fibromyalgia.  Started me on Lyrica, Tramodol and Ambien for sleep.  He wants me to see a Rheumatologist for the joint pain and second opinion.
Here's my questions.  Should I go with the Fibro diagnosis, and stick with Neurologist and see a Rheumatologist, or should I continue to pursue the Lyme Disease hypothesis.  I have an appt with an Infectious Disease doc tomorrow.
In your opinion, is there much difference in clinical presentation of Lyme and Fibro? How do you think the ID doctors will react, if I say, Keep Looking.  I don't necessarily want to "settle" for a Fibro Diagnosis is I can be treated for late stage Lyme.
So, again, how does Lyme present differently thank Fibromyalgia?  Thank you,
Helpful - 0
Avatar universal
In my experience Fibro and Lyme are completely different.  Although Fibro is disabling, Lyme is extremely serious and can lead to neurological problems and organ problems like hepatitis for example, In my opinion, you should pursue the Lyme Disease diagnosis and don't fall into the FIbro diagnosis especially with a classic bulls eye rash.  Good luck
Helpful - 0
Avatar universal
Sorry, just now saw your message from a few days ago.  I agree with ree4tu1's comment about pursuing Lyme.  ID docs, rheumies, and most docs aren't big on diagnosing Lyme.  

The urgent care doc seems to have been on a reasonable path, but then got himself sidetracked based on the negative IgG and IgM tests.  Those tests look for antibodies your body makes against the Lyme bacteria; the tests do NOT locate Lyme bacteria.  Therefore if your body doesn't make enough antibodies to show up on the test, the test will be negative, but you can still have Lyme.  Right after infection, your body may not have had enough time to ramp up the antibody production:  thus a negative test.  Also, if you are tested some time after infection, your immune system may have given up making the antibodies and just watches the bacteria sitting in your body causing trouble.  The tests are lousy, and a wise doc will not rely on them heavily.  Old fashioned history taking and diagnostic skills are what is important.

This is a longer way of saying I agree with ree4tu1's comments:  find an LLMD and get a work up and if the LLMD agrees, get treated.  Go for it -- I would.  Absolutely.  Let us know how you do, okay?

Best wishes --
Helpful - 0
Have an Answer?

You are reading content posted in the Lyme Disease Community

Top Infectious Diseases Answerers
1415174 tn?1453243103
CA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods