Discussions By Condition: Infectious diseases

Painful Symptoms - Possibly Lyme?

Posted In: Infectious diseases 2 Replies
  • Posted By: barbyfirefly
  • December 3, 2008
  • 06:46 PM

I have been ’sick’ for about 2 and a half years. I wanted to get some advice or possible answers from people that have been diagnosed and maybe experience some of the symptoms I have. I don’t know if they are all related but I will list them and see if I can get any help. I really appreciate this. BTW, I want to say that my neurologist did a very good job but he was exhausted and I really appreciate his effort. So here they are...

Initial symptoms - burning face/’brain’, temporary (about 2-3 mins) blindness and seeing spots in one eye, feet tingling and numbness and turning purple and not warming up no matter what I did, a rash appearing seemingly under the skin bilaterally on the sides of my knees and the inner part of my forearms and elbows (this rash looks like purple splotches and can be seen clearer in fluorescent light or sunlight), random moderate to severe pain (burning, stinging, tingling) in different areas of my body and different times (legs, hips, head, face, back), balance and coordination problems and severe fatigue.

I wound up in the ER soon after the symptoms first started with severe burning head, ears, face and back; complete numbness in my arm and a stiff neck. My face, scalp and ears were visibly the color of a lobster. My reflexes were fine and the MRI was clean. While talking to the nurse then painful burning on one side of my back transferred completely over, through my spine, to the other side. They sent me home with a possible diagnosis of Neuropathy and a referral to see a neurologist. He tested me for lupus first. It came back negative but I have seen that the test is hard to get right. I have never had the butterfly rash on my face though (that I know of, at least not the scaly kind, but I do get flush a lot... just figure it has to do with the burning.) Diabetes was negative, negative for MS, negative for thyroid problems, negative for neuropathy although they said I had some problems with some nerves in my legs (??).

Other symptoms - sour stomach (new - at least 6 months, all day - every day), throat feels like there is something stuck at random times (no burping - new - 2 months), temporary loss of hearing on one side at random times but comes back quickly, balance issues, memory problems, random slurred speech throughout the day but only a couple times, migraines since puberty (about 2-3 a month), I used to have headaches every single day until this all started - now I have them maybe 2 or 3 times a week, which is a relief.

Any responses could possibly be very helpful. I don’t know if chronic stress can cause all of these symptoms or if they are even all related but I would like a medical diagnosis before I just give up and blame it all on chronic stress. The random painful burning symptoms aren’t as frequent anymore but I can’t even work out. Just walking up 5 flights of stairs 2 weeks ago made my legs hurt very bad.

I also have epilepsy (but haven’t had a seizure in about 4 to 5 years so I think it may be gone) and Scoliosis (not severe) which my primary care doctor says is putting pressure on my spinal cord.

I don't know if this matters either but my dog got extremely sick after being boarded in a kennel and coming home COVERED in ticks. Needless to say, 2 of them engorged themselves in me. This was about 5 months before the symptoms started. Also, I got bit/stung but an unfound insect about 3 weeks before the symptoms. The bite on my foot took a year and a half to heal. I have not been tested for Lyme (also a fickle test).

I know this is a lot... some of it might not even be relevant, but it has been over 2 years. :-)

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2 Replies:

  • Dear Barbyfirefly,I'm so sorry to hear about your physical condition. Your process sounds exasperating.I have recently been diagnosed with chronic Lyme Disease. It took a long time and a neurologist who used to work in Connecticut, but after two blood tests (positive Western Blot) and a negative LP, my diagnosis is confirmed. I'm not a doctor, but we do share some of the same symptoms. Mine have been ocular migraines (blurred/loss of vision); migraines w/pain; extreme fatigue; vibrating feet,legs, pelvis, abdomen (started w/feet and progressed); twitching in feet, legs, abdomen, arms, back, neck, head; ocassional dizziness; ocassional poor balance; memory problems; tachycardia (EEG and Halter Monitor), and poor concentration. My experience has been that Lyme is difficult to diagnose. The problems seem to be:1) Lack of physician knowlege2) Testing can be tricky. Some tests and LABS have false negatives and without persistance by the MD, they are accepted without further investigation. Additionally, the disease is good at "hiding". 3) Symptoms can can mimic other diseases like MS.If you decide to pursue the test, find a lyme disease specialist in your area OR a doctor who did their medical training in the Northeast where there are higher rates of Lyme Disease (supposedly). I wish for you to have strength to continue to seek answers and find improved health soon!All My Best,Courtney
    Anonymous 42789 Replies
    • January 7, 2009
    • 02:41 PM
    • 0
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  • Hi Courtney,Thanks for your response. I was actually diagnosed with Lyme Disease on the 8th. I have researched it a lot. I know all about the politics behind this disease and it's horrible! I wish more research was done and they could find a cure. I have found a LLMD and will be seeing him ASAP for treatment.
    barbyfirefly 9 Replies
    • January 18, 2009
    • 09:34 AM
    • 0
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