lyme disease????

[Lenore38]

I currently live in Burlington, MA - recently moved here from St Paul, MN last fall. got engaged. I am 38yr old; over the past three - five years; the following symptoms have occurred and been dismissed as laziness, self inflicted or stress:

- numbness in hands, and feet
- swollen limbs - predominantly my left foot and leg both are swollen daily now; used to be once in a while.
- stiffness in joints; legs, elbows, neck and back, hips
- unexplained weight gain - used to work out 3 days a week and continued to gain 5 pounds a month - have put on 50+ pounds in less than a year. Can no longer hit the gym due to the swelling of my feet; it is terrible pain probably a catch 22
- digestive issues; have had a colonoscopy in August of last year; came out fine.
- no allergy to wheat or flour
- am scheduled to have a CT Scan of my abdomen.
- no RA - Rheumatoid Arthritis - went to a Rheumatologist - tested me for RA, Lupus and other blood tests done.
- went to Endo - tested for adrenal gland, thyroid, B12, muscle enzymes - all came back negative; as well as Lyme disease <-- I asked for this one.
- burning sensation in forearms and lower legs.
- muscle twitches; especially when I am relaxing - in bed or watching tv and settling in for the evening .
- insomnia.
- constipation.
- feet are swollen to the size of my calves. First complained of shin splints - that is what I thought they were; about 5 years ago - if I walked too fast it would be excruciating burning sensation; I had to sit down and rub them for it to go away. Then my foot would go numb and I would 'drag' it along.
- hyper sensitivity to touch.
- temperature changes; hot and cold
- dry skin and scalp
- spine and left back hurts continually; attributed this to my smoking; I quit 4 months ago and this is when all of these symptoms intensified.
- my lungs are clear as they xrayed them for a follow up of pneumonia from the previous fall.


I have an appt scheduled for the end of Sept with a Neurologist. I have seen the following: GP, Rheumatologist, Endocrinologist, and now a Neuro.

I recently went to Ohio for a family reunion; when my aunt first saw me she asked if I have seen a cardiologist. I have heart disease in the family; but am not sure what is going on .  My father died at 50 from a heart attack my grandmothers' sister (father's side) died at 42; my grandfather at 49....

[TWEEZER]

My blood test for Lyme was borderline.  It has to be in your system for quite a while before it shows up.  I went to a dermatolagist and it took from October until December for it to show.  I had athritus in my legs and back so bad I could hardly walk.  My ankles were swollen over my shoes and normally my ankles are the smallest part of my body!!  I had spots all over my back and arms like chicken pox although the bite was on my thumb.  I was real spacy, my eyes were wierd and blurry along with being so tired I could hardly function.   I got 3 sets of shots of what my Dr. called Silver Bullets . One on each side of my butt for 3 weeks.  It worked and I finally started recovering.  For years afterward I would have those feelings around the time of my period and every now and then I get those feelings and think maybe I am having recurrance.  Everytime I get near a tick I panic.

Good luck...no one realizes how devestating this illness is.

[winfree]

Will you see a cardiologist soon?

[winfree]

I meant don't rely on blood tests, and did not get appropriate treatment for 3.5 years. Do you have any cognitive processing problems, depression and anxiety, sensitivity to environmental stimuli? Lyme is systemic disease and can effect any and everything.
I had neurological lyme that gave me constant head tremors and body jerking (more so when tired in evening) that neurologists said was weirdest movement disorder they had seen, but my problem was psychiatric. even said at a main tertiary clinic that should have been aware of lyme.
Being so ill without right diagnosis and treatment just wears on a person. I'll be thinking of you. winfree

[winfree]

don't rely on blood test for lyme diagnosis. It should be diagnosed clinically. I did relay on it, and did not get diagnosis and thus appropriate for 3.5 years. Have neurological lyme so a lot of damage was done during the wait. My test came back positive only after I was on effective treatment. Dr. Fallon (www.LymeDiseaseAssociation.org) said he has patients clearly with lyme but never get positive test.
At this point you might to try a specialist in Chronic Fatigue Immune Deficiency Syndrome. This was my case - was referred to alternative med dr. who also practices conventional med. I feel she gets the harder to diagnosis patients who are chronically ill, because conventional dr.s can't fit them easily into their "boxes" and don't like being unsuccessful, so it becomes diagnosis of it is all your head.
Please don't give up trying to find out what is going on, and don't stay with dr.s who tell you it is your head!
Hope this helps. winfree

[speechgeek]

I have had 90% of the symptoms you report and I have lyme diseae. You need to request a western blot and if it comes negative you need to ask if any bands came back positive. It's important to have other things ruled out but while they are taking your blood they might as well do this test. Lyme mimics a lot of other diseases such as MS, ALS and Parkinsons.

My western blot was negative by CDC standards. I had one band come back and it is specific for the bacteria that causes lyme disease. I am being treated and I am doing a lot better.

Please do some research on the lab test for lyme disease so you are aware of how inaccurate they are.

good luck

Rebeccah