Brief background: I have been treating Lyme (and suspected Bartonella) for 10 months now. I've made some progress. However, I still have what my LLMD has deemed fibromyalgia pain. (He checks all my fibro pressure points every time I see him. Only two are always present. The rest show up on occasion.)
It's at the point where he's trying to break it to me that this particular Lyme symptom is really hard to get rid of (i.e., I might have to live with it). I'm not willing to accept that.
For the most part I'm okay, and some days I think I'm making progress. Then I exert myself and I'm in pain for days (more like two weeks really). Then I'm more or less functional again.
I want my previous active lifestyle back and I'm not giving up until I get it. So, my question is specifically for those who've had severe fibro pain issues that have resolved. What treatments worked for you?
Posted by Lymetoo (Member # 743) on :
An LLMD who focuses on "fibromyalgia" is not a real LLMD if you ask me. (and no, you didn't ask me.. lol)
Good Lyme treatment should get rid of most of the FM pain UNLESS you happen to also be having a magnesium deficiency or a reaction to GLUTEN or DAIRY. Going off each of these could yield amazing results!
Also make sure you are treated for babesia. Nearly every Lyme patient has it. (yes, a blanket statement .. but usually true)
Posted by Razzle (Member # 30398) on :
Low thyroid or magnesium deficiency can mimic Fibromyalgia also.
My Fibromyalgia pain stopped as soon as I started getting enough magnesium.
Posted by Robin123 (Member # 9197) on :
Keep in mind we all have different strains and what may work for one person doesn't work for the next, but here's what has worked for my fibro: 150mg oral clindamycin 2x/day - worked for 5 years, then stopped working.
Now I put powdered turmeric powder in capsules and take a couple a day.
Posted by faithful777 (Member # 22872) on :
Pituitary damage can also be the cause of fibromyalgia symptoms. Even a small knock on the head can cause it.
Read "Real Fibromyalgia RX" by Dr. Dan Purser, available at amazon.com. Less than $9 to purchase.
Posted by Kudzuslipper (Member # 31915) on :
I Also wouldn't give up. But think there are some pains that are just part of life, let alone life after Lyme.
In addition to the magnesium mentioned... How is your sleep? That was what really helped my 25 year plus Dx of FM. If your not sleeping well ask for some help. Controversial as it is ambien changed my life.
Also, I think different abx work differently in different parts of the body... I was lucky in that the very first combo I was on seemed to help my deep muscle pain, but I believe the remaining buggers ran to my joints instead...
That was over 2 years ago and many protocols ago. One of my remaining symptoms is this pain in the joint on the top of my feet, both feet... Even though the pain appeared one foot then the other my first week of herxing, I assumed it was just there to stay,
But just a few weeks ago, my pcp started me on bactrim for an ear infection... I have never been on it before... And lo and behold 4 days in,the tops of my feet hurt by at least 75% less than in the whole past 2 years!!!
My ear infection also stopped me cold as I was dizzy, so perhaps it was the combo of the right med along with giving my body the rest it needed to heal...
I do not believe even the best llmd would have thought bactrim for foot joint pain. But it may be worth a conversation about which class of abx you have not tried... And if its time to try a totally different combo for a bit...
In my opinion, as much as we know about Lyme, Bart, Babs, fry bug, myco, etc... There are probably millions more organisms not even named yet. So much of lyme/medicine is experimentation.
Sorry for hijacking, but thought my story may spark an idea to talk with your doc about.
Posted by Carmen (Member # 42391) on :
I watched a video testimonal recently of a woman who claims to have cured her lyme disease with Rife treatments... but she said that much of the pain continued anyway. Some people call this post Lyme pain syndrome.
She went to an acupuncturist and had chinese cupping therapy done per the therapists recommendation. This removed the pain for her and she says she is fully well.
Chinese cupping moves 'stuck' energy and the toxins that are locked in tissues. I can only assume that many of the toxins from these parasites do not get eliminated correctly and perpetuate pain.
I was delighted to hear this as I had been seriously considering adding chinese cupping to my list of things to learn before I had lyme. I had been saving my money to get the equipment, but all that has now been poured into my current treatment.
For about $250 you can purchase the tools and learn how to do it yourself and much of it you can self apply. You would need help with cups applied to the back. There are sites that offer DVD instructions.
Posted by Kat1777 (Member # 39231) on :
My doctor is a real LLMD who has helped many patients get better. I was sick for a long time. I just think I'm one of his more challenging cases.
As for Babesia, I am not being treated for that co-infection because based on my symptoms he doesn't think I have it. I'm okay with that. My goal is to do the least damage to my body as possible with all these antibiotics. The fewer I take the better.
There is a local chiropractor who advertises about ridding patients of "fibro" (yes, he puts it in quotes) pain and I was wondering if that would be worth investigating. Chiros seem to be open to a lot of alternative treatments and that is actually my preferred course of action too.
At the same time, I can't deny the fact that the ABs I have been on have done me some good. I'm just not improved to the point I'd like to be and I don't like it when the discussion starts drifting in the direction that I might never improve.
My thyroid numbers are all good and I supplemented mag for a while (even though my numbers are in range). I'm also sleeping much better these days, so I don't think it's that either. Good things to consider though.
Posted by robbiem (Member # 32092) on :
I started taking 20 tablets of Chlorella daily upon turning in for the night.
I started doing this a year ago.
Little by little, I found the pain to lessen.
Today I am literally pain free.
I'm also a big proponent of detoxing -- the biomat has worked well for me with both pain and sleep.
Posted by GretaM (Member # 40917) on :
Magnesium Malate
4000mg magnesium malate (1000 mg elemental magnesium), in divided doses
"Fibro" 7 years
Posted by Catgirl (Member # 31149) on :
I'm with Carmen and Robbie. I've had cupping and gua sha done. Both were awesome. I found myself asking for gua sha every visit though. It's good to do in the winter as it tends to leave some temporary marks that look like a hickey (lol). I never cared as I felt so much better afterwards (just wore a turtleneck).
Both forms of TCM disburse toxins that set up home in the body. I also believe detoxing heavy metals is beyond helpful for lyme patients--it's necessary.