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Lyme Disease Message Board


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Hello everyone, my story is a long one, basically most of my life, I have been suffering. I had unexplained illnesses most of my life, always diagnosed with different things. When I was about 8-10 years old, I had a tick bite, with classic symptoms. It was back of my leg, swelled to double it's size, bullseye, very hot and painful. At the time, the docs said I had an allergic reaction to a spider bite.
For years, I was always sick. Swollen glands, sore throats, weird rashes, heart palpitations. I was sent to so many specialists as a child and teen. When I was 18, in 1996, I got very sick! Came out if nowhere and felt like ever flu and sudden blindness, extreme photo sensitivity. I was told then, I had mono...weeks went by and I got sicker and sicker, further complications, one another. Dystonia, hallucinating, fevers on and off and completely bed bound(I have very limited memory of it)....eventually, I had Bells Palsy & the photosensitivity didn't go away....a different ID Doc then was sure it was Lyme, although back then, it was fairly new in diagnosing. Western Blot was positive, I was treated for the complications and on Doxy for a while, so long ago I don't know dose and length of time....over time I became healthy enough to resume life....since then, I have had a TON of health problems. I have had 4 children, all complicated pregnancies and unexplained issues. Long story shorter, it is now 17 years later and I suffer daily. I had severe pelvic pain for a long time,2years ago @34 I had a complete hysterectomy and after, almost died, ended up in the hospital for 3 months. After the surgery I had a heart attack, unexplained bleeding & ended up with triple pulmonary embolisms. I was then told that I must have a clotting disorder and most likely some sort of "genetic issues"....I have had genetic testing and nothing. I am passed around from doc to doc like a hot potato for years!! I really never thought that possibly my Lyme was never fully treated?! A friend recently talked to me and she really believes my issues are all Lyme related and doesn't think it could be a coincidence.
I am 36 years old now...My daily symptoms now & forever:
-heart palputations,sometimes so bad I can't sleep
-constant anxiety. (Been taking lexapro for 3 years no and no change & doc doesn't want me to stop it)
-pelvic pain(hysterectomy 2 years ago, no relief)
-clotting disorder (diagnosed VonWillebrand Disease by one doc, another disagrees)
-gastric problems; recent thickened small intestine, random IBS/vomitting
-joint pain/neck and back pain(told I have arthritis in my neck as per xray?)
-numbness and tingling in hands and feet
-can't regulate body temp
-sudden flush face then goes away on it's own
-glands always swollen & new doc said my thyroid enlarged(had thyroid tests and all normal)
-no energy, ever. (Most of my life so I don't know what it's like to be normal)
-weight gain over the years, I barely eat & follow a healthy diet
-hair falls out in handfuls at least once or twice a year
-terrible memory, confusion at times & in turn get very overwhelmed
-bouts of terrible depression & mood swings (learned to cope but very difficult)
-recent MRI shows fluid around my heart
Sorry for the LONG POST but I really didn't think all of this could be a result of my positive Lyme test so many years ago! My friend who is unfortunately suffering from Lyme now, talked to me today and insist I go to an expert and get IGENEX testing?? I feel so stupid since I really try to be proactive with my health but I thought if it was possible related, all of these docs I have seen through the years may have pursued that route, she says that's far from true and they wouldn't find it!?

Can I still be suffering from Lyme Disease all of these years and been chasing my tail? At the point I think I maybe crazy! I am not even 40 yet and it's discouraging when you are sent from doc to doc for so many years. I honestly didn't think it could still be due to Lyme. In 1996 my western Blot was positive for Lyme and back then(1996) they said it was far progressed and in my brain since I had the Bells Palsy & light sensitivity blindness.

Can someone please tell me your thoughts and expertise? I am desperate and just figured this is just the way I am, I don't know what it's like to be pain free & want to know if this could really be Lyme all this time??
Thank you, again, sorry for the long winded post, I actually left a lot out! Lol





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