Diagnosed with Lyme need more advise

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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/17/2008 8:06 PM (GMT -6)   
Hi guys, so Dr G diagnosed me today based off clinical findings. She said that 31 is highly indicative of lyme and that they typically like to see 2 bands pos and/or a bite but she feels I fit the lyme picture based off how my symptoms started etc. She said once I start treatment she thinks the IND of 41 and 34 will be pos along with others.
 
So now I have a new concern. Did any of you fear what if you DIDNT have lyme and you hurt yourself with all the meds? I am the type of person that likes to see fact in writing, LOL, I want the numbers etc...BUT I do feel I have lyme due to everything going on in my body and the other neg tests etc..
 
I am going to be taking Zithromax, Doxy and Flagal.....
----------------------------------------------------------------------
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 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, NO DX YET
 
 
 
 
 
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/17/2008 9:32 PM (GMT -6)   
If you were perfectly clear about what you were going to do... and didn't question all the "what ifs", I'd say you you didn't have LD... but, since you are... I think it's LD.... just my very non-medial opinion.

Well, I knew on some level that I did have LD, but I just could not accept it somehow. I had this kernel of doubt.... "what if I am imagining all of this. What if past trauma has damaged me". But then I would ask my husband, "If it's all in my head, how come I'm not being treated by a mental health professional for all this stuff "in my head"?

Then during a course of Rifampin and Doxy (after having been off all ab'xs for 6 mos.) I had my one and only really crazy bad Herx reaction. It lasted 10 days straight. I had done so little LD research that all I really knew about a herx was that it could be a "good sign". The very first day I was in bed. I cried, vomited, had diareah, sweated nonstop (I think the bacterial die off and released toxins were trying to get out of my "host" body any way they could)... I was so sick for 10 days straight... on that last day at 5:30pm on a Friday I finally called my doctor and said "I can't do this any longer, I can't take it." I was told to discontue the medication until my next appt. The very next day (and the following 2-4 days) were the best days I have EVER had during my 8+ year hell-ride with Lyme disease.

The best thing thing that Herx did was cure me of doubt. I now have no doubt that I have LD and co-infections. I know how I felt for those few days. It was incredible, food tasted good, I could see clearly, no brain fog, I even did a cartwheel in my back yard.... and I thought "It's over" and then started crying. I didn't tell anyone that first day - I wanted to be sure.... by the 3rd and 4th days I started telling people.... man was I HAPPYYYY - I never realized that being healthy is so joyous and free. And then slowly, my symptoms returned... even though I was still on the abx's. I have since tried to replicate this combo of abx's since then with no success.

Sorry I hi-jacked your topic. But hey, let's talk more about MMMMMEEEEE!!!!

Take the meds. You'll know fairly early whether or not your body can handle them. I think any risk from abx therapy is much less than what would happen if you let LD go untreated.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/17/2008 9:36 PM (GMT -6)   
thanks so much. That is what the dr said, the risk of the anti out weighs the risk of letting lyme go and all my symptoms are pointing to lyme...I too have a hard time accepting it but I dont know why?! I keep thinking its some other neuro medical mystery etc....that they just have not been able to detect.
----------------------------------------------------------------------
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 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, NO DX YET
 
 
 
 
 
 


unwillinghostess
Regular Member


Date Joined Jan 2008
Total Posts : 63
   Posted 11/17/2008 10:30 PM (GMT -6)   
Maybe have a CD-57 taken to get another piece of the puzzle. The numbers are usually low with Lyme cases.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/17/2008 11:13 PM (GMT -6)   
I think I had it done but results are still pending. I did have a high reverse T count..

----------------------------------------------------------------------
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 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, NO DX YET
 
 
 
 
 
 


judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 11/18/2008 6:03 AM (GMT -6)   
Couldnt resist responding, you have been suffering, Lyme Treatment may cure you, give it a shot, side effects are not so bad for the gains you may have

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/18/2008 11:48 AM (GMT -6)   
Hi,

Unless you are CDC positive it is fairly typical to have self doubts about treatment. Those doubts will be with you many times because hey - this is somewhat surreal!! NONE of us imagined this would happen and back when I got sick they didn't understand much. Now you have some years of some very bright scientists and physicians studying this and trying to figure out how to get us well.

From your posts I think that you will question many things along the way. Your case, symptoms, and some of your results are typical of lyme. Like many, you have seen so many drs., had so many tests, etc. and you still feel very ill and have many disturbing symptoms. In my opinion you should go with the physician's recommendation. The combination of drugs may make you feel worse for a while after you start them. Hang in there (I told my husband I couldn't take it, I was dying etc.....). This is going to be a process that will take a while. Start trying to focus on getting as well as you can. Take many breaks from the computer or you will obsess on what is going on.

Don't be afraid - you can do this.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/18/2008 12:04 PM (GMT -6)   
Thanks for the pep talk...I started last night and will closly monitor things along the way.

----------------------------------------------------------------------
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 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, NO DX YET
 
 
 
 
 
 

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