This is topic My Symptoms - Lyme or Auto-immune? in forum Medical Questions at LymeNet Flash.


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Posted by luke339 (Member # 8580) on :
 
OK so I don't know where to turn for help and this has happened to me before in 2006. Recurring usually means something is going on so now that this has been bad, gotten much better and now has gotten bad again means I need help.

A few things to note I had laser eye surgery Thursday Nov 3rd to seal a tear in my left retina (tiny whole). The next day I got a headache that continued to grow in intensity Friday and Saturday afternoon I ended up in the ER due to major head pressure, couldn't see straight. CT scan showed some swelling in the left back side of my head (so the doctor said) and she asked if I hit my head, I told her no and it was dismissed for some reason.

Symptoms are:

It looks like a laundry list of things but this same thing happened to me early in Jan 2006. I went looking for help to a Neurologist, infectious disease doctor, Endocrinologist, Ears/Nose/Throat, Allergist, ER doctors. None came up with anything except to throw drugs at me. There is something systemic here that only occurs on my left side. When it happens twice I think there is obviously a major issue that I need to address but I have no doctor that is willing to help me figure out the problem. Is this Auto-immune?

I am from East Lyme Connecticut so the Lyme Disease doctor tested me for Lyme, turned out I had tested positive for a co-infection (a tick borne disease that usually comes along with Lyme called Ehrlichiosis) but not very positive for Lyme (western blot some bands positive but not enough for CDC positive). I was treated for Lyme and during the time period most of my symptoms disappeared (2 years of treatment) but that could have been coincidence. Some issues go away on their own with auto-immune so I am not totally convinced.
Right now this burning in my left arm, shoulder weakness and burning, neck pain and weakness, jaw weakness is really F'ing with me. The only thing that helps is Vicodin and I don't want to be on opiates for the rest of my life (3 days is enough).

Another thing to note I had just gotten off of Leviquin (7 day round) to get over a throat/sinus infection about 1 week earlier before eye laser. I just want you to have all the facts to see if someone out there can help.

Does anyone know of a doctor in LA that is willing to help me get to the bottom of what is wrong with me? I really can't go through this all over again, my job and my life will suffer again and I can't afford it.

Yes I already posted in looking for a doctor in LA in the looking for a doctor section.

Thanks so much.
 
Posted by randibear (Member # 11290) on :
 
hmmm, have you had mri? sounds like a stroke type thing to me.
 
Posted by Lymetoo (Member # 743) on :
 
More info here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/112504
 
Posted by nefferdun (Member # 20157) on :
 
I agree. I sure know nothing about stroke but it happened so suddenly and dramatically, all on the left side, that i would get an MRI.

Levaquin can have some very nasty side effects. Load up on magnesium, vitamin C, amino acids like lysine and methionine, and alpha lipoic acid to try to detox.

You can also order the supplement Rapid Response which might help but it is expensive - about $75 for a month's supply. It stopped my tendonitis from levequin immediately and I had it for 8 months.

If it is autoimmune disease low dose nalrexone is very helpful for stopping the progression. It has been very successful with MS and Crohn's disease.

It is not uncommon to test negative with borellia (referred to as lyme). Ehrlichia can become chronic when it is not treated. I still have it. It can affect the eyes with neurological symptoms, swelling, fatigue, muscle pain and headaches.

I would check for a stroke first and then get a LLMD. I hope you find out what is wrong. That is very scary.
 
Posted by luke339 (Member # 8580) on :
 
Only thing here is it happened the same way in 2006 and I had multiple MRI's done to no avail. I will consider going back to the doctor to see if this can happen, This is really getting in the way of my new job. They are understanding but not that understanding. I have an LLMD appointment on Saturday, I really don't want to go back to ER for this but there is no way to get priority otherwise it seems.
 


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