So frustrated!

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Regular Member

Date Joined Sep 2008
Total Posts : 285
   Posted 10/4/2008 12:30 AM (GMT -6)   
My neck is tight but the worst symptom of all is this head pressure in the lower back of my head.. what frustrates me is that from what i've read online , it is a symptom of Babesia--yet my Dr. won't treat me for babesia yet..She said at my next appt in a month, we'll start that..  I just don't understand why.. She says my 400 mg of doxy for lyme will help the babesia for now.. (maybe she doesn't want to treat everything at once).. I also read that co-infections should be treated before lyme... This is a reputable lyme Dr in New Jersey--I don't think its right to be taking this much advil..esp for my stomach

Regular Member

Date Joined Sep 2008
Total Posts : 285
   Posted 10/4/2008 1:36 AM (GMT -6)   
id also like to know if anyone has experienced jerking feelings..i wouldn't explain it as a twitch because its a little more than what id consider a twitch if its a full body one.. its hard to explain, but when i look back , this was my first symptom.. i have it in my legs and head, but overall i feel like its everywhere.. if im standing i can feel a little jerking in my body and then im fine.. its like involuntary movement

Veteran Member

Date Joined Sep 2007
Total Posts : 2017
   Posted 10/4/2008 12:49 PM (GMT -6)   
I've been into this odyssy for 8+ years. I'm in the middle of my 3rd round of IV Rocephine. This time I will be receiving tx for 10 weeks straight (2x a day 4x a week).

I have had neck and head pain for 1 year straight now - every day, every minute of every day, for over a year. And the jerking is so severe I fell out of bed last week. I am bruised from my right shoulder down to my right hip and ankle. I also look like a heroin addict with all the pin holes, missed veins etc.

I wish I could be more up beat, but I can't stop crying today. Just know, you're not alone.
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-WE'LL SEE
Current Rx's 08/25/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Restoril 30mg, Prevacid, Darvocet, Acidophilus, Flagyl 1500mg, Urso 250mg, IV Rocephin 4 grams, Magnesium Chloride and/or Magnesium Oil - I need to order off the internet 
LYME DISEASE and SSDI theme song - 

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 10/4/2008 4:01 PM (GMT -6)   

Jennifer, I am so glad you posted.  I have been worried about you.

I am very sorry you are feeling so bad and that you fell out of bed.  You must be so sore.

Do you have a PICC line?  Why is the doctor prescribing Rocephin for only ten weeks, because of the dose?  Have you been tested recently for Babesiosis?  For me Babs caused the neck and head pain I had.

Hang in there.  If you need to talk, please email me okay?


Veteran Member

Date Joined Sep 2008
Total Posts : 1120
   Posted 10/4/2008 6:32 PM (GMT -6)   
Hi: When there is so much going on with Lyme, how can you tell exactly what is causing the neck/head pain? I have read that just Lyme without co-infections will cause the neck/head pain. Are there different meds for all of the co-infections? This is all SO confuisng to me.  D

Regular Member

Date Joined Jun 2008
Total Posts : 83
   Posted 10/5/2008 6:28 PM (GMT -6)   
I have a question. How much is it for the Lyme test by Igenex?
Interstital Cystisis or Chronic Recurrent UTIs - No treatment currently, but hoping while treating the Bartonella, the body will be strong enough to kill the UTIs on it's own.
Bartonella - Biaxin
Nystatin with antibiotic
Garlic pills
Vitamin E 400IU
Probiotics, two hours after antibiotics

Veteran Member

Date Joined Apr 2007
Total Posts : 1599
   Posted 10/7/2008 8:15 AM (GMT -6)   
who is your lyme doc in nj- i am in nj- you can email me if you don't want to post her initial -
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