Hi there, My name is Rob and I live in Maryland. I've had lyme for over seven years. I got better after a year and a half of therapy and then had a relapse four or five years ago, and got better again.
This time, however, a pain doctor put me on some strong narcotics for pain. I ended up getting physically dependent on them and then a pain specialist tried putting me on Methadone for a month. I ended up having bad reactions to that too and I've been going through terrible withdrawals since March 1st. Unfortunately, it's made my lyme wake up bigtime - light senstivity, pelvic/back pain, fatigue, etc. I'm going on disability through work, but it's sixty percent of my pay and I don't know how I'll get by and pay for medical bills. I have a month's worth of Cumanda and Semento (Cowden's protocol) which I'm starting along with Amoxicillin/Biaxin. It isn't much, but I have to regain my health quickly or I lose my home, car, etc. I'm desperate to find a good LLMD in my area as I can't see my doctor in New York. I can't travel far either.
Anyway, that's my story. It's been a hell of a month with withdrawals and my lyme waking up is terribly disappointing. Has anyone had bad withdrawals affect their lyme?
Thanks, Rob
Posted by bettyg (Member # 6147) on :
i copied this over to his seeking dr. post and also BROKE IT UP for easier reading for us all... Posted by Aniek (Member # 5374) on :
Rob,
Welcome to the board. There is a support group in Washington, DC that meets once a month. Their website is www.natcaplyme.org
I also have a pain specialist I like who is in Washington, DC. I'd be happy to send you a private message with his information if you want.
He's not Lyme literate, but he does understand how difficult Lyme pain is and how unlike other conditions Lyme pain is.
Posted by Lymetoo (Member # 743) on :
WELCOME, ROB!!!!! I hope you don't lose your home! I lost mine!!
Do you have children??
Posted by JayG (Member # 14594) on :
Welcome Rob We are sending good thoughts and healing prayers your way
I certainly hope someone posting replies to you here can help you with a pain and /or LLMD
Our plight (lymies) is such that for most of us the only thing that works for pain are the stronger narcotic pain meds
I am always fearful of the dependancy issues that come along with these meds..but I need to take the edge off to continue working
You mentioned the 60% pay, long term disability I assume?
I had back surgery in June and my pain dr. advised me to find another line of work or else go on permanent disability
This is easier said than done as you mention in your post...while I was off 8 months last year for my surgery I was getting LTD benefits and came to realize how insufficient that amount of pay is
I am back to work only able to make it through my days with the help of rather strong pain meds
My pain specialist dr. will work with me there as he knows I am the primary care-giver for my Lyme-disabled DW Sheila
Here's hoping that all of your ancillary issues with the meds can be worked out and you can get back to the healthier days that you enjoyed for a time after your 1.5 yrs. of therapy
I pray for pain relief for you Rob and that your knew protocol works a lyme miracle
Godspeed to you in your recovery Rob, and I apologize for the lengthiness of this post on your thread
Until that day
JayG
Posted by lymecaregiverNY (Member # 13287) on :
Dear Sir;
Check out this website. The medical practice is located not too far from where you live.
Godspeed.
Posted by stella marie (Member # 7216) on :
No new suggetions, the one above would have been what I'd check out. Good Luck!
This is for you...
Posted by just don (Member # 1129) on :
I would check into getting Tramadol,a non addictive narcotic for the pain,,, cheap and effective.
Can be combined with neurotin if necessary!!
Welcome aboard!!thinks--just don--
Posted by AlisonP (Member # 7771) on :
Hi Rob,
Methadone withdrawals should only last about three to five days, at least physically. That said, I think that Lyme can somehow magically increase withdrawal time exponentially, or somehow create an identical sensation of withdrawal for an extended period of time, not sure which. I have had a similar experience to yours.
Withdrawal plus Lyme is, to put it mildly, a nightmare. Night. Mare. Wait, I take that back: Lyme plus withdrawal plus herxing is the worst hell on earth.
I'm wishing you the best...I know you are in a really difficult position right now. Clonadine patches have given some relief to some people.
Alison
Posted by KirstenS (Member # 15146) on :
Hi Rob, I am so sorry to hear all that you have been and are going through. I have had Lyme for 29 years and finally I have found a Dr who is helping me. I go to the Fibro and Fatigue Center in King of Prussia which is near Philidelphia. (www.fibroand fatigue.com) His name is Dr. Garabedian and he has been God sent. I contracted Lyme when I was 10 yrs. old and living with it for 29 yrs has been a battle. Lyme not only makes you feel horrible it also starts wearing down so many areas of you body. They do extensive blood work to find out what else has been affected from the Lyme. I have been on a protocal of anitbodics for killing off as much Lyme as they could but with that it really has been rough. I am herxing most of the time and really have not been able to live my life Herxing means you are killing lyme. Because of having Lyme disease for so long and not getting treated the Lyme lives in my brain, it's basically called Neuro Lyme Disease. Lyme is smart and hides it the brains soft tissue because it is safe there. Gross right?! I am curious as to why your Dr has had you on such strong pain meds? I know how hard it is to be sick and in pain most of the time. The joke with my friends is, I am the healthiest sick person they know! Please feel free to ask me any questions you may have. Good luck and hang in there!
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