posted
Hi, I am new here. I have been doing an outrageous amount of research on Lyme Disease lately. I hope this is the correct place to post this. I currently have no idea what is wrong with me, but Lyme seems to be the likely culprit. I know the testing is not very reliable so I am hoping to see a LLMD before seeing anyone else for a possible cause of my undiagnosed symptoms. Here is part of my journey so far.
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 red. 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 - nausea but no vomiting), throat feels like there is something stuck at random times (no burping - new - 2 months, not very frequent), temporary loss of hearing on one side at random times but comes back quickly(not frequent), balance issues, memory problems, random slurred speech throughout the day but only a couple times a day, 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 am usually in some kind of pain throughout the day. Whether it be my back hurting, burning sensations, shock-like charges shooting down my head and spine, headaches and so on.
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. It hurts to sit on one position for longer than 20 mins or so. My back starts to hurt so bad, my legs... I just feel so OLD! I am only 23. It's upsetting. I currently have a migraine which is causing and enormous amount of pressure in my head, eyes (its hurts to move them), neck pain and changing positions (kneeling then returning to an upright position) causes the blood to rush to my head and cause even more pain...
My reason for considering Lyme: My dog got extremely sick after being boarded in a kennel and coming home COVERED in ticks. Needless to say, 2 of them were sucking my blood for an unknown period of time. They both had their heads inside my skin so I had to pull them out. One was in my neck (I woke up with it), the other in the fold of my inner thigh. I don't believe I got the bulls-eye rash with either. This was about 5 months before the symptoms started. I did break out in hives soon after removing the one in my neck and I got a weird raised rash near the inner thigh tick. 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.
I know this is a lot... some of it might not even be relevant, but it has been over 2 years. :-)
My mind is so foggy right now that it is getting difficult to keep rereading this for errors, so I hope there are none. Thank you for your time.
-------------------- I am so sick and tired of being sick and tired!!!
I'm not a dr, but I would just say that with as many symptoms that you have, in multiple body systems,
and a tick-ridden environment, and a rash of sorts, that Lyme might be what you have.
I have lots of the symptoms that you describe, including the pain, the flushed face, etc (my skin turns burning hot!). Also was tested for lupus and negative.
Again, I (and I think alot of us here!) have symptoms like yours. I would recommend finding a LLMD and bringing all of these things to his/her attention.
You have a whole life ahead of you! You deserve to live it well!
Mar
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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When you do see your doctor please press them to treat you even if the tests are negative. I tested negative 10 times including once with my LLMD. i am now postive after 2 months of abx.
Of course most LLMD know this but just in case.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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If you want something that helps out with the nausea a lot, get some ginger root capsules (not tablets). They work fantastic! Learned that one from a maternity forum Posts: 123 | From Georgia | Registered: Jul 2008
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posted
Barby, you are describing Lyme symptoms. Best to get to an LLMD as soon as possible so you can start treating. Treatment can make us feel better.
Posts: 13116 | From San Francisco | Registered: May 2006
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