Question for Plateletgal

[Quadmother]

Hi Plateletgal,

I've come across your posts under Neurology, etc., and I wonder if you know how to find a *qualified* doctor or lab to test for Lyme?  My PCP has been as thorough as he can be...he's drawn labs for everything we can think of for my symptoms (see posts under Neurology)...aside from Diagnosis of Iron Deficient and Pernicious Anemia my basic, disabling symptom is Severe Fatigue and joint and muscle pains/spasms and problems with my balance...PCP drew for Lyme (and Sprue and other possibilities) and sent to Mayo for lab work...all came back negative.  Is it possible I have Lyme and it was missed?

Also, following a link from Neuro forum I found info on M.E./Chronic Fatigue syndrome...I have a lot of those symptoms (ME) but also don't have a lot (chronic sore throat, for instance).

I've been out of work for a year now (and am primary earner for my family!) and some days are OK, but others I cannot rise from bed for more than a half hour or so.  If I exert myself on a "good day" I'm in for a "bad day" the following...Advil, in large doses, takes edge of joint/muscle pain.

Social Security is sending me to a Psychologist to see if it's "real" I suppose.  2 Psychopharmacologists and therapist all think "organic"...but no diagnosis is no diagnosis...I live in Boston, Mass. area.  Any ideas would be appreciated.

[Quadmother]

Thank you so much for the information you provided.  I'm seeing my PCP on Friday and will get together info on the Marshall Protocol and request a new Lyme test.

The thing that resonates with me is this - in December, 2004, I came down with some virus that the NP and MD could not identify.  The lymph glands in my neck - all of them, up and down the back and in front were so swollen I could hardly turn my head.  The NP even brought in a student to see me 'cause she'd never seen anything like it...NP referred me to a surgeon...but the glands went down after a week or so and I never kept the appt. with the surgeon.

At the same time I was going through the lengthy and traumatic illness of my father and finally, his death.  Everything focussed in 2005 on dealing with my grief and the deep depression it spawned...

All of this to say - it's hard to pinpoint when the worst symptoms - Fatigue, spasms, etc. started 'cause there has been so much going on for so long..

I do not remember a bullseye bite - and I'm on the lookout 'cause I have four kids and we live on the East Coast...but that's not to say I didn't receive a bite in a place I can't see or didn't notice...

Again...thanks for pointing me in the directions you did!

[PlateletGal]

I just read a report the other day about a man who was diagnosed with CFS and he actually had lyme disease instead. I heard that lyme disease is among the top 10 misdiagnosed diseases. Unfortunately, many of the symptoms of lyme disease are the same as CFS and/or other conditions. Do you ever recall ever having a rash and especially a rash that looked like a "bullseye" ? If so, then definitely lyme disease would be suspect. Also, if you recall being around ticks or getting bitten by a tick.

As far as the testing, the reasons why so many lyme disease patients' have negative test results is that their immune system is compromised and they are not producing the antibodies that the lab tech needs to see to make the diagnosis. Also, one vial of blood may not contain the bacteria, borrelia burgdorferi, that causes lyme disease and another vial of blood may have the bacteria in it.

Lyme disease patients' can have encephalitis (inflammation in the brain). Usually the symptoms in the first stage of lyme diseae are fatigue, chills and fever, headache, muscle/joint pain and swollen lymph nodes. The second stage --- meningitis (fever, stiff neck, severe neckaches), paralysis of facial muscles and numbness and pain in the arms or legs. The third stage symptoms, called chronic lyme, is nervous system problems (memory loss), chronic pain) & brief bouts of swelling (usually in the knees).

The western blot test is the most accurate test for lyme disease. You may want to consider to keep getting retested and/or checked for encephalitis. In addition, you may want to google for the CFIDS Association of America and see if you may have that. You might also be interested in a research protocol (Marshall Protocol) that I'm on for CFS. The protocol is research, but the medications aren't. The beauty of this protocol is that it treats both lyme patients and CFS patients ! However, it is a research protocol --- relatively new, but they do post their success stories on their website. There are two blood tests that people can get to find out whether or not this protocol may help them (vitamin D -- vitamin D 1,25 hydroxy). They also have a physicians' request on their website, on the General Board where you can request that one of their  Moderators send you a private message with MP physicians in your area.