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Sandpuff 09-29-2007 08:52 AM

Unexplained symptoms, what doctor should I see?
Hi - I've been having unexplained symptoms for the last year off & on: Night sweats, fatigue, temp runs a little high 99-100 off & on, swollen glands that never go away (some have been there for years), chest pain, lower back pain that bothers me mostly when I stand for a long time, rash that comes and goes on my chest for no reason, rash or just itchiness on my ankles.

All blood tests come back negative. Oncologist tested me for lyme but from what I've read the standard test is unreliable. Also did an ana for lupus which was normal I guess. This was in February and I felt pretty good all summer, then it hit me again about 6 weeks ago.

I was ready to give up getting a diagnosis (because I'm tired of doctors treating me like a hypochondriac) until I read in the paper this a.m. about a guy who has west nile and for the longest time doctors just told him his symptoms were stress related, even though he was losing feeling in his legs.

My gp said she wanted me to see an infectious disease doctor. Is this someone that would know how to look for lyme and other sometimes overlooked diseases? I just am tired of getting expensive tests done that don't show anything. I was thinking I have lymphoma but I guess the doctors aren't worried about that, at least if they are they're not telling me.

About 9 or 10 years ago I had spinal myoclonus which also never could get a diagnosis of what was causing it. Since then fatigue has been a problem, but in the last year it really hit me again. I've for the most part learned to live with being tired, but when I have bouts of feeling worse I'd really like some answers. Thanks for listening.

roro 09-29-2007 10:00 AM

Re: Unexplained symptoms, what doctor should I see?
your symptoms sound exactly like mine. I had the rash and was treated for lyme in 95, and went on a month of antibiotics and thought I was cured. then a year later started feeling sick, I had swollen glands, low grade fevers, joint pain, knee, now mostly back, fatigue, etc for years and never got a diagnosis. I never considered it could be a relapse of the lyme. I got a bunch of BS diagnoses like CFS, FMS, depression which I know now are bogus. then 3 years ago the sh1t hit the fan and I ended up in the hospital with pericarditis, meningitis, cranial nerve palsy, multi-system failure, etc. I figured, OK now they will get to the bottom of this, now they cant say its "all in my head" or I am a hypochondriac. I was dead wrong. even though my tests were positive at the time, they still told me it was not lyme. I went to 50+ specialists and got no where. they thought I had MS, ALS, myasthenia, and other scary things, but when I would go to the specialist to treat these, they would say i didn't have it. this went on for 3 years and I believe they were just going to let me die. My immune system was so shot and I was getting so sick that I was getting end-stage infections that people with AIDS get, like yeast, thrush, bladder infections. I finally went to a LLMD and I am now getting treatment. it is so nice to go to a dr who is more knowledgeable than me. he knows my symptoms and which co-infections go with each one, and how to treat them. I cannot say enough about LLMD's. Regular infectious disease will usually not diagnose lyme, even if you test positive and have all the symptoms. some go there with the bullseye rash and still don't get diagnosed. then, even if you could convince them to treat you, all they will give is 1 month of a weak antibiotic and that will not cure it anyway.
My LLMD does not take my insurance, most dont, and I was worried about the cost, but my insurance ends up paying it as out-of-network and I am getting re-imbursed for most of it.

Sandpuff 09-29-2007 10:49 AM

Re: Unexplained symptoms, what doctor should I see?
Wow - it sounds like you've been through it all. When I first had medical problems in 1999 with the myoclonus I was referred to dr. after dr. and was treated for depression, immune disorder of some sort, tourrette's syndrome, and was told things like "pseudo-parkinsons", maybe ms, etc. and no test ever revealed a thing so doctors just said it was anxiety. The myoclonus was the only definite diagnosis after they hooked me up to machines at mayo clinic and said the motion was too fast for me to do by will (which I knew I without them telling me.) Of course I was anxious! I felt terrible and was jerking so hard I'd fall down!!! Never had a medical problem before that. I felt so bad about myself after all the tests and no results that I swore I'd never go to a doctor again unless I was dying. I stuck with that until this year and the chest pain hit and I had fatigue that kept me in bed so I broke down and went.

I'm really fed up. My dad said if another doctor tried to send me off with an antidepressant he was going to have a talk with them. My family knows it's not in my head and encourages me to get it checked out. I think I'll have to start taking them to appointments with me for back up (if I go to the doctor again).

I'm glad you found a doctor that understands. Thanks for your input.

ticker 09-29-2007 10:49 AM

Re: Unexplained symptoms, what doctor should I see?
Hi Sandpuff, welcome to the board! I like your screen name!

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. Is this the test you had done?

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

Infectious disease doctors are not usually the best to see for tick-borne illnesses. If you need a doctor recommendation, let us know.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

Sandpuff 09-30-2007 04:19 AM

Re: Unexplained symptoms, what doctor should I see?
Thanks for all the helpful info. I think I had the ELISA test done if I remember right. I will check the good doctors list to see if there are any in my area.

ticker 09-30-2007 04:25 PM

Re: Unexplained symptoms, what doctor should I see?
Hi Sandpuff. The clostest doctor to NE that I know of is Dr. Charles Crist in Springfield, MO. You may want to see if there are any support groups in your state. They may be able to recommend a doctor.

Good luck!

jmma 06-10-2008 10:38 AM

Re: Unexplained symptoms, what doctor should I see?
why is the medical community so anti-lymes??????
three years ago i very suddenly came down with a dibilitating flu-like condition - severe pain in my bones, dizzy, fuctuating fevere and sweats, etc, all without any sinus condition. i could barely get to the doctors office the day it all hit me. they immediately suspected west nile, took blood and sent it to the cdc. weeks before i had stayed at a b&b farm in the n.c. mountains. the doctor asked me about any bites - of which i had not experienced any - and looked for any rash. after that he totally discounted any notion that i might have lymes. they did not give me anything for treatment, and blew it off when the west nile screen came back negative. it took me MONTHS to recover. a year later, after my annual physical and blood test, they discovered a problem with my blood count. long story short - i have been diagnosed with essential thrombocytosis (high and rising blood platelet count, double and triple the norm). "e.t." can be the effect of many causes such as cancer, immune system problems, injury or infection - or severe insect bites. although not a terminal condition on its own, there is no "cure". they cant find a collaboration between my "flu" and the e.t. and will not consider lymes at all.
i went to a naturapath (irridolgist). i gave no symptons at all and asked for just a screening and was within minutes asked "do you realize that you have lymes disease"... i even underwent a 2 month homeopathic treatment for lymes, unfortunately to no avail.
two years of this and last week my oncologist prescribed a chemo drug to control my blood count.

they dont always have answers. we simply must - have to - keep looking for answers to help ourselves. per postings here i will look into whatever a llmd is. good luck to y'all. hang in there.

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