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Hi all, I have both Lyme dysautonomia and Cranial neuritis. I am looking for anyone out there who has experienced any lyme neurological problems which led to these problems. More specifically how were you diagnosed and what treatment resolved these problems. Or do you have permanent problems. I failed a tilt table test, (Vasovagel Syncope). I have been diagnosed with POTS or (Postural Orthostatic Tachycardia Syndrome). For two years, I can barley walk. I have terrible headaches, ringing ears, dizziness, neck and mid back pain, shortness of breath, and fast heart rate. I have mental confusion, and really wonder why I can't get better. I have a picc line. I did 6 weeks Rocephin, 8 weeks of Doxy, and three weeks of Zithromax which was stopped because it increased the ringing in my ears like my LLMD thought that it could.

My LLMD says the ringing in the ears is from inflamation of the eighth cranial nerve. These problems have been with me just over two years. I have been on antibiotics on and off since Aug 2007. I have now been off Zithromax for the last three weeks and will be starting Cefotaxime next week.

I'm really tired of not being able to work, shop, or enjoy life. I also have terrible insomnia. If anyone has any suggestions let me know. I know Lymies shouldn't take steroids, but would it possibly help the relentless pain.

Thanks
[QUOTE=KSA884;3475355]Hi all, I have both Lyme dysautonomia and Cranial neuritis. I am looking for anyone out there who has experienced any lyme neurological problems which led to these problems. More specifically how were you diagnosed and what treatment resolved these problems. Or do you have permanent problems. I failed a tilt table test, (Vasovagel Syncope). I have been diagnosed with POTS or (Postural Orthostatic Tachycardia Syndrome). For two years, I can barley walk. I have terrible headaches, ringing ears, dizziness, neck and mid back pain, shortness of breath, and fast heart rate. I have mental confusion, and really wonder why I can't get better. I have a picc line. I did 6 weeks Rocephin, 8 weeks of Doxy, and three weeks of Zithromax which was stopped because it increased the ringing in my ears like my LLMD thought that it could.

My LLMD says the ringing in the ears is from inflamation of the eighth cranial nerve. These problems have been with me just over two years. I have been on antibiotics on and off since Aug 2007. I have now been off Zithromax for the last three weeks and will be starting Cefotaxime next week.

I'm really tired of not being able to work, shop, or enjoy life. I also have terrible insomnia. If anyone has any suggestions let me know. I know Lymies shouldn't take steroids, but would it possibly help the relentless pain.

Thanks[/QUOTE]
hi KSA884
I am so sorry to hear how badly you have been feeling. Approximately how long have you been diagnosed since you have had been exposed to the lyme . I ask because sometimes it takes as long as being exposed to recover .
I do not have the cardiac part of all your illness with you lyme but I did go through the neurological lyme part with the poor balance ,I could not sneeze without almost falling over, ringing in the ears could not walk straight with my eyes closes horrible headaches buzzing in my head and had sufferred a small stroke with cognitive difficulties .
Also very hard time walking dragging of my right leg terrible myalgia pain.
Finally after almost 6 months on IV rochephin the neurological problems started to diminish
I continued on the rocephin for another six months First 6 months 4 days on 3 days off 2 gr then
7 days in a row for the next five months Then IV zithro
daily since nov along with mepron for the co-infecttions and just recently added cipro to the mix I am still improving abpout 60% there I am still fatigued but walking and thinking much better could still use morte improvement but much better than before
About 3-4 months into my treatment I developed bad myalgia pain along with the joint pain
At this point I was put on kadian 50 mg daily they can go up to 100 I think daily with vicodin for the breakthrough pain along with xanax and trazadone to help with the insomnia
Sounds liike alot but certainly is better that the excruiating pain of the rest before . You can not heal as well when in chronic pain or little to no sleep
Do Not take steriods with lyme It suppresses your immmune system and ours is already that So many people believe it boosts it , It does not
Pleas talk to your doctor or a pain management clinic in your area
This can be a very long process and patieence is a good virtue
I know it is very difficult at this time but you can recover
Keep us posted how you are doing and our thoughts and prayers are with you
Take care
Ryebeach





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