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Lyme Disease After Six Years...
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Lyme Disease After Six Years...

Dear RPS:

I won't rehash my symptoms again as I think by now you are familiar with my story (fascics, burning, visual disturbances, mouth sores, fatigue, etc).  I have a friend I met via the internet 4 years ago...our symptoms have always been amazingly similar.  Well she, finally, after six years has had a positive Lyme test.  Her symptoms worsened over the last year to include extreme debiliting fatigue and balance disorder.  She was tested once before early on in the process and it was negative.  There is no way of knowing whether it has been the problem all along or not.  She is now on IV antiobiotics.  Here is my question:  you here over and over again the Lyme Disease advocates saying don't give up you might have Lyme.  Well here is a good case in point:  Martha DID have Lyme.  I have had two or three negative antibody tests and one recent negative Western Blot.  What other tests pick up neurological Lyme?  Is a lumbar puncture the only way to know for absolute sure?  That is the only test I have never had and I am very afraid to get it and to risk the spinal h/a afterwards (I have three children and a husband who works and is in school full-time).  Do you know anything aobut the Lyme Urine Antigen Test?  I am asking because whenever I review a lyme disease checklist my symptoms match in many respects.  I am happy my friend finally has an answer although if it has been Lyme all along I understand that is not so great...any thoughts would be appreciated.  When do you give up on Lyme?  Thanks so much.
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Dear Maureen:

There are several things to consider.  One is the location you live and the places where you have been.  If they are in an area of high lyme disease then one would worry more that what you may have is lyme disease.  Second, the fact that the western blot was negative is a very good sign that you don't have lyme disease.  This is a very sensitive test, more than the antigen tests.  I read about people who have lyme disease, and we tend to check it in people who we think may have it, symptoms may suggest, or to rule out the remote possibility that it may be causing symptoms.  I must say, that when there is a thought that it is present, we usually find proof.  There are many doctors who make a nice living testing everyone for lyme.  There is no one definitive test for lyme that is fool proof.  Anything is possible and one never knows.  You must try and do what you think is best for your health.  With the several negative tests, I would think you don't have lyme, but only you can make a decision to have another test.

Sincerely,

CCF Neuro MD
9 Comments
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Avatar_n_tn
Thanks for your reply.  I understand what you are saying.  I am going to try to find out how prevalent it is in an area in Michigan where I was vacationing right before I got my very first symptoms.  Otherwise, I did grow up in an area in PA where it is very common (I have family members who have had it...).  I am hoping you can comment on the lumbar puncture as a tool for detecting Lyme when all other tests have been negative (antibody, Western Blot, etc). The Philadelphia doctor does have it on my differential if I get a LP. Thank you.  Maureen
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Avatar_n_tn
Dear Maureen:

PCR of the CSF is very sensitive test, if the organism is in the cells taken in the CSF fluid.  I would think that the physician will also try and culture the organism.  One never knows and if you and this physician think an answer might be obtained then that will help ease your mind on the diagnosis.  I would prepare yourself if the answer is negative, then what?

Sincerely,

CCF Neuro MD
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Avatar_n_tn
Dear CCF Neuro,

There are lots of doctors who test everyone for Lyme, however, there are also lots of doctors who misdiagnose Lyme as MS, Lupus, stress, fibromyalgia, rheum arthritis etc. and I've heard from lots of them, some formerly in wheelchairs who are now running! I went to a "respected" neurologist who did not test me in spite of the fact I told her "I haven't felt like this since I had Lyme 10 years ago." I took her word for it that Lyme was not a factor, and suffered for 6 more months until I found a Lyme symptom list (my first bout only featured headaches, fatigue, so I was unaware that my neuropathies, visual symptoms, joint pain, strange rashes, etc, etc. were related - oh and yes I had a psychologist tell me it was definately NOT in my head and to find someone who would listen and dx me correctly.

Lyme tests are horribly innaccurate - I guess I don't understand the reasoning on the part of the medical community that they will let people suffer instead of giving a trial of antibiotics to people who possibly have this disease. Lyme IS a CLINICAL diagnosis, as I'm sure you are aware. Most of the misdiagnosed illness for Lyme are clinical as well. I guess telling people they have a host of other diseases with no proven cause scientifically makes a lot more sense than realizing that the Lyme tests, are for a variety of reasons inaccurate.

I happen to think that lots of Neurologist make a good living off treating "MS" and perhaps are afraid that at least some of these people might get cured, or if it is found out they really had something curable, might sue the pants off the neuros who were too arrogant to look at Lyme as a cause of symptoms. After all, antibiotics are NOT harmful if a patient is misdiagnosed with Lyme instead of MS, but the MS drugs (steroids) DO harm Lyme victims misdxed with MS. In my mind, given the unreliabilty of Lyme tests, it would make sense to treat all "posible/probable cases of the previous list as Lyme to see if there is an improvement. I'd bet doctors would agree if it was thier child facing life in a wheelchair. Alas, if that were to happen, there may no longer be any doctors willing to treat Lyme.

I've been on abx for a month and a half and am beginning to feel somewhat back to normal. Thank God I found a docor who treats Lyme seriously. He was smart enough to start my therapy before waiting for my lab results - my serology was positive but my antigen test negative, however my reaction on medication was exactly what you'd expect from a person w/Lyme.

I hope the original poster has the sense to look into the possibility of Lyme a little closer, read the studies for yourself and get on the Lyme sites. Many people are seronegative and some of the sites will give you reasons why that sometimes happens. It very well may not be Lyme but in case it is....
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Avatar_n_tn
Dear Anon:

There are multiple issues concerning Lyme disease.  It can mimic many diseases and as you correctly identify, it is sometimes difficult to treat.  Usually, patients should know that they have been bitten by a tick, and that they live or visited a know lyme infested area.  Often there is a characteristic rash.  It is when the patient doesn't know if they have been bitten by a tick and then presents with non-diagnostic signs and symtpoms that Lyme disease becomes an issue.  Still, the tests pick up over 60% of patients.  One always needs to rule out all possibilities in patients with non-specific symtpoms.

CCF Neuro MD
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Avatar_n_tn
If tests pick up 60% of the patients that's 40% they don't pick up. Would you bet your health on odds like that? I wouldn't. Some of the tests have much lower rates than 60%.

Lots of patients do not remember the tick bite - you'd not be likely to notice one in your hair, armpit, back, behind a knee, etc, In fact I'd guess you wouldn't be likely to notice one on about 40% of your body.
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Avatar_n_tn
thanks for your comment.

CCF Neuro MD
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Avatar_n_tn
Thank you for the information.  This is exactly what has happened with my friend.  She does NOT remember a tick bite.  So now here she is 5 years later, 26 years of age, and in very rough shape.  She is now on IV Rocephin.  

I am seeing a Lyme literate doctor in Philadelphia area on May 1.  I live in Chicago area.  I would love to chat with you privately if you could e-mail me.  Thank you so much.  ***@****
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Avatar_n_tn
thanks for the comment.

CCF Neuro MD
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