At my last LLND appointment my doctor said he will not put me on IV antibiotics until my pain is managed better because he said likely my pain may get worse on IV. I am currently on Im rocephin and doxy. He referred me to a pain doctor because what he has tried has not worked.
I spoke with a family friend who is a pain doctor and she said likely my local pain doc will offer me Sympathetic nerve blocks and it sounded like CRPS to her. I am not sure if I want to have any injections now but at the same time I can't let myself continue with this level of pain.
I have been mostly in bed for 6 months and I have two kids and a loving husband. I desperately need to get more functional. I don't have a lot of fatigue or brain fog just serious nerve pain.
I have been treating for 6 monthes. The nerve pain is in my back and ribs(the front and back). Often the nerve pain radiates into my abdomen too.
The pain is chronic I literarily feel it to some extent constantly. All the nerve roots that come out of my back are sore to touch and my ribs either feel severely bruised or they burn. Sometimes my back burns too and I can't even lay on it.
I am just starting lyrica and waiting to see if that helps. Oxycodone helped a little(just took the edge off) but the side effects are pretty bad for me. I detox and I eat gluten free.
I am getting desperate. I am not sure where to turn. How many if you have had to turn to narcotics just to function? Did your pain finally ease up after enough treatment?
I am not sure if I should go to the pain doc. I don't want to have to explain that I won't take his steroids. I am not even sure if a sympathetic block is steroids but it is still an injection into the spine. I am not sure if that is something that is recommended for Lyme. Thanks for reading!!
Posted by GretaM (Member # 40917) on :
Hi, I have a full time pain doc.
He gives me trigger injections every two weeks.
It helps a ton.
I explained how I didn't want to go on any narc pain relievers, or affect my immune system.
He is totally working with me to help me with my pain but still respects my opinions.
Have you talked to the pain doc about the options?
Hang in there.
And your doc is right, the IV abx increases pain during the herx.
Mine was quite bad there for a while.
Posted by River4 (Member # 43677) on :
Thanks for your response Greta! what is in your injections? Lidocaine? prolotherapy? Is your pain nerve pain? Are you in any other pain meds?
I notice you're from BC. I am in Oregon and I used to live north of Seattle. Is your Lyme doc in Canada? I know there is a LLND that has a very informative website in BC. He does antibiotics and other integrative type IVs.
Has the iv antibiotics helped you? How long have you been treating?
Thanks
Posted by River4 (Member # 43677) on :
Oh I just reread your post and saw that you did not want to go on any narcotics. I have been trying to avoid that too but I am starting to think this much pain is not healthy for me either.
I am glad you were able to avoid the narcotics. I am not sure if that is something I can avoid. I have a very high tolerance for pain and I am amazed that I have been able to sleep through it most nights but it is getting out of control. I need to be able to start participating in life a little more. It is becoming a serious mental health issue for me.
Posted by Judie (Member # 38323) on :
I went to a pain clinic and the doctor was totally aware of Lyme. I didn't have to explain much.
They give narcotics there, but also have all kinds of other treatments like laser (which also helps the immune system and brings down inflammation).
There was an acupuncturist too, but wasn't covered by insurance.
I also did physical therapy and the exercises helped. It took about a year to feel relief. It was a slow process (I believe our bodies just don't heal quickly because of all the stuff going on).
IM rocephin is good. My doc says it's about 85% as effective as IV. I've read some reports that say it's over 90%.
Posted by canadianmama (Member # 36298) on :
We used a mild hyperbaric chamber with supplemental oxygen to combat serious nerve pain in my son's body.
We treated for 4 months and now he hasn't done any more mHBOT in 3 months and no back sliding.
We did photon therapy for bacteria fighting, but the nerve damage had been done -he went 8 years undiagnosed and nerve pain was a primary symptom for the first 6 years.
mHBOT fast tracked healing nerve pain.
Good luck!
Posted by droid1226 (Member # 34930) on :
I had the exact back, rib, stomach pain. Lyrica did nothing for me. If it's relentless nerve pain, I'd take neurontin and ultram. It worked better than any narcotic for me.
If you must take a narcotic to function, I wouldn't take anything strong(perc,oxy) it'll just make you toxic and weak. Maybe vicoprofin, but nothing with acetaminophen in it. It's like sludge through your liver and inhibits glutathione, which you need as much as possible(coffee enemas are great for that as well)
I took low dose vicoprofin throughout treatment and was uber disciplined and had an end game. But I wish I found Ultrams earlier in treatment, I'd have never tried any opiate.
I strongly recommend daily epsom salt baths and coffee enemas. Especially if you are taking scripts and rocephin. You want you're liver working at it's peak. It should reduce nerve pain.
For baths, I use 4lbs epsom, 32oz peroxide, and 1 lb baking soda. They work very well.
I can't recommend ultram enough. It just worked great.
Posted by lostlyme (Member # 38561) on :
Prior to being treated and diagnosed with lyme and bartonellia ,I was in so much pain , I did find one doctor out of 100 who took me serious ,
First prescribed lyrica that did not work for me .
The next step was cymbalta that gave a little relief
So I had to increase the cymbalta . After that it was such a huge relief on my pain in my joints.
Don't get me wrong I was a 10 on pain scale , I managed to get that down to a 6 or 7 on pain.
It might seem minor , but in my self it was relief.