Need advise-desperate

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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/13/2008 9:49 PM (GMT -6)   
Tonight I spoke to a woman on the phone who has lyme, she lives north of me. She saw the same dr I am seeing for Lyme. I had my 1st appt 6 wks ago, she saw my Igenex results (only band 34 pos and 31 41 IND on the IGM), and sent me in to get tested for co infections. I see her again Monday
 
I have had a full body bone scan, MRI of head and spine, EMG, TONS of blood work, have seen at least 10 drs-noone knows what is wrong with me. That leaves my mind to run rampid thinking I have MS or ALS or other things even though I know my symptoms dont 100% match either or any of those.
 
My fear is that my co infections come back negative, I have heard they can as well as lyme per cdc standards anway. My fear is she wont clinically dx me.
 
If you were in my shoes what would you do? I would like to request from her to give me doxy or whatever for at least two wks to see if I herx, feel btr and I could do the urine challenge. I am fearful I am going to be stuck in the same situation, no dx after my appt and no meds.
 
Would 2 wks worth of meds do me a lot of harm if I didnt have lyme
 
My joints are now grinding on each other, I am getting worse with whatever the heck is going on in my body.

Thoughts appreciated
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 11/15/2008 6:38 PM (GMT -6)   
king1234
anything new with you? I just saw your post and noticed the date summited. Your story sounds very interesting and I know personally how frustrating it was be to have this weird stuff going on and not knowing what is is.
Let me know what's up.
maggie

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/15/2008 6:45 PM (GMT -6)   
Well I found out from my PC that my co infections came back neg. I am set to see the LLMD for the 2nd time on Monday. I tested pos for band 34 and IND on 31 41 for the IGM via Igenex. I am going to ask her to put me on meds for 2 wks to see if I herx, and to do the urine challenge. She has not dx me yet, and I am hoping she does off clinical findings. NO other dr (after the dozen) I have seen knows whats wrong, one says go see a rheum the rheum says go see the neuro its you CNS--everyone is stumped. I have had SO many tests and everything is fine, hundreds of vials of blood drawn, all okay. What else the heck could this be? I have most of the symptoms.

Sorry, I am just feeling so lost. The worst for me is the full body twitching and joint cracking, the pains are so random and fleeting that I can deal with them for now....I can deal with the nerve pains too
 
I dont think 2 wks of meds could hurt me, so I hope she agrees to this.
----------------------------------------------------------------------
33 yr old female
 GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
LYME-TESTED POS BAND 34 AND IND ON 31 41 IGM THROUGH IG IN PALO ALTO, NO DX YET
 
 
 
 
 
 


ryebeach
New Member


Date Joined Jun 2008
Total Posts : 10
   Posted 11/16/2008 10:15 AM (GMT -6)   

Hi Gracies Mom

I am sorry to hear your daughter is having to go through all of this . It makes me feel guilty to feel the depression I do when I hear of a child going through this awful disease. If there is anything we can help you with please don't hestitate to reply.

   If you don't mind asking how long has your daughter been going through this?

It has been 3 years at least for me maybe much longer without knowing it . I have had the nuero lyme babs and bart  and am going through a bad relapse since discontinuing IV treatment 4 months ago . Insurance issues. Igenex and CDC positive with the lyme bacteria attached itself to my DNA haven't been able to start the treatment for bart since being too depressed to start on ribfampin for that but after seeing the post about your daughter gives me reason to keep up the battle .

Take care

ryebeach

I will keep your daughter and your family in my thoughts. I guess we all have to just keep on keeping on no matter what.

 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/16/2008 11:30 AM (GMT -6)   
Is that Rye Beach as in New Hampshire? I am from NH and wondering what doctor everyone there goes to see there. I am currently in Dallas Tx but would like to heard back eventually...D
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