I know many here have it worse than me, but I am feeling pretty discouraged after several recent nights of very very little sleep (1-2 hours) due to combination of joint (shoulder) and nerve (everywhere) pain.
I tested "+/-" for borrelia and positive for babesia "fish" about 6 weeks ago. (I appear to have been under-treated upon initial infection 4 years ago, where treatment started about 10 days after 1st sign of illness, 8 weeks of 1500 amoxocillian 3xday).
I'm convinced the shoulder is lyme taking over a previously moderate rotator cuff injury. (I should mention I had a cortisone injection in the shoulder bursa late last fall, and I suspect that may have been part of the relapse...or maybe the lyme was already there and caused the imflmmation in the first place?)
In nay case the shoulder is now going absolutely ballistic, and the nerve pain had been dampened down a bit with neurontin but is again like hot pokers trying to get out from behind my face and body.
I am taking naproxen for shoulder, with vicoden added some evenings, on top of max (or close) neurotin dose for nerve stuff.
Like I said neurontin seems to be losing effect on nerve pain, and the shoulder pain is incredible and gets worse as I lay down and hours pass with no sleep to show for it.
I also have a couple recently herniated (at least diagnosed) discs in back and neck that are always there, along with recent achilles flare-up for no apparent reason.
I hate being on all these drugs and still feel miserable. I finished a 30 day course of zithromax as first treatment towards lyme and babesia about a week ago and waiting results of western blot re-test and llmd consultation to figure out what to do next.
Work, family, and my usual fitness routine have become a real struggle...confusion, double vision, reduced mental ability, mood swings, depression, anxiety, etc round out the picture...and I am feeling desperate.
Any other similar stories out there, and what have you done?
Thanks
[ 12. September 2007, 02:59 PM: Message edited by: LocalMan ]
Posted by Geneal (Member # 10375) on :
Dear LocalMan,
Welcome to the "I am so tired I could die, but can't sleep club".
When you say your Western Blot is +/- are you talking about specific bands?
Could you post your Igenex results here?
If you are having a "herx" reaction to antibiotics, that is usually
An indicator of Lyme.
It is really hard to go on antibiotics and expect to feel better,
Then feel as if you are going to die.
Please don't be discouraged.
I have been in treatment for almost one year and am herxing again.
As another member of this board said (Lymetoo if I may?)
"The only way out is through".
Hang in there.
Do you have a LLMD?
They may be able to give you something else for the pain and/or sleeplessness.
While you are awaiting your second WB results, have you started on babesia meds?
This has been one of my toughest co-infections to fight.
Still fighting it.
Glad you are here. I am sure others will be along to offer their expertise and support.
Hugs,
Geneal
Posted by frakktured1 (Member # 13028) on :
I don't know how expert this advice will be. I still have sleepless nigts.
I have had some nights when doing IV ceftriaxone that I got more than four hours straight. However, only Ketek orally has ever had me sleep alot....too much.
There's a couple reasons why we become insomniacs or have sleep Apnea.
FIrst of all though. I think you should stop doing the NSAID Naproxen. Just my opinion.
However whenever I have done any type of anti-inflammatory, Steroidal or NON-Steroidal. My
symptoms were always worse.
I allow myself some advil from time to time. That is the strongest NSAID I will take.
You may want to search for PTSD and Chronic illnesses for some answers.
Also do a search for sleep remedies. Either mainstream or alternative
Although it seems you got ABX at the right time the right strength and a partner abx should have been prescribed along with the Ammoxy. Also Eight weeks was probably too short a course.
Were you still experiencing these pains while on the initial abx. Say a month later?
FXD
Posted by LocalMan (Member # 11648) on :
HI and Thanks
I do have an llmd but he is swamped and hard to get to. I have a phone consult lined up for this Friday.
After my initial 8 weeks of abx (4 years ago) I was feeling much better at end except for some joint pain...I felt like I was 150 years old when running, but I pushed thru with help of IBU.
I have not had any new treatment specific to babesia, just the 4 weeks of zithromax.
LLMD's secreatary wants to put me back on it after 1 week off...I just need to talk straight to llmd to see what the overall plan is once IgM WB re-test results finally get read.