I am new here and I am Looking for some help. My symptoms with lyme started 5 years ago with severe chest pain and "tightness in my chest". Some people on this board call this air hunger. The symptoms came and went away with a year and after a million test that showed to be normal. 2 years ago I started to have some burning in my thighs. It lasted a few days and went away. That was may 2006. In August 2006 I began to have nombness and burning in my legs and my arms. It lasted 2 months an after 3 MRI and a million normal blood test it disappeared. I also had a obnoxious and severe eye twitch during that time. May this year I began to have numbness again and dizziness as well as blurry vision. My worse symptoms were the severe headaches. The whole package lasted a month and then it went away. Again I got the million dollar blood work which was normal and a few more MRI which were normal. In July I had swollen lymph glands with night sweat that lasted about 2 weeks. My pcp sent me for a chest,abdomen and pelvis CT scan which was... you guessed it normal. Then I began to have severe joint pain specially to my knees and wrists. That lasted 1 1/2 months and then went away. Last August when my seasonal allergies started I began to have burning in my legs again but htat lasted only one week. Then I began to experience weakness to my legs and some stiffness to my right calf. I occasionally get muscle twitching. Had a few more labs by my neuro and they came back normal. Now I have weakness to my legs, shoulders and knee pain, some muscle twitches, sore throat and tongue. I have an appointment with a LLMD in Dec. I have been on Doxy 5 weeks so far. My Igenex came back positive for IGM. I need help. Everyday is a drag. I feel like I am dying. Sorry About this long post Posts: 17 | From Michigan | Registered: Nov 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
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WELCOME TO LYMENET!*)*)! !*)!*)!*)*)!*)!*!)*!)*!!!!!!!!!! Welcome- you sound sick! No fun. Your symptoms, while they could be LYme or Ehrlichiosis or something else, resonate really well with the symptom set for Babesiosis or Bartonella, two TBD coinefctions which have a lot of peripheral neuropathy, and headaches. Your LLMD should be able to evaluate you for all of them. I used to be super sick and am symptom free now and I have seen that hundreds of times with longterm abx therapy and lots of supplemental therapies- you will read about plenty of options here-!!! But Doxy is a great beginner drug for lYme & TBDs because it is the ONE drug that hits the MOST htings- it has action against Lyme, Ehrlichioisis AND Babesiosis (although it will not eradicate an entrenched Babs infection on its own). So you are already on the right path!!!
I had major neuro Lyme and it sucked. It can take time to get better but it is so worth it!!! I am glad you are here- Best wishes, Sarah O.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. Feel like you are dying!! Yup, sounds like Lyme!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Wow, Annick, you could be me!!! I started with "chest tightness" about 3 yrs ago and you are the first person to equate that with air hunger. Thank you for that insight. Then, instead of the burning right away, I got incredible skin itching on my arms and legs. I also had panic attacks... I had diagnoses of "allergies" and "anxiety", thank you very much. Also got CFS. I have other symptoms as well, but these were the worst.
Fast forward, now I've been seeing an LLMD for 2 yrs and am slowly making progress. The skin itching has turned to burning, which might be for the best or worst (don't know).
Two diagnostic tests were VERY helpful to me in that they didn't come back "normal". They were punch biopsy for small fiber peripheral neuropathy done by my neurologist and sent to some special lab (can't remember the name but I can get it to you if you want). My peripheral nerve fiber density is very very low. Still is...
Second, I got a nuclear SPECT scan done at Columbia U medical center. Came back with moderate/severe hypoperfusion...
These two tests have helped me link my elusive descriptive symptoms to real problems for non-LLMD docs.
I hope that helps. Feel free to PM me with any other questions.
I wish you all the best!
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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