Do you have Fibromyalgia with Lyme Disease?

My LLMD thinks that Fibro IS Lyme. Don't give up trying to get better. I'm on narcotics for the pain -- I know some are really against it, but it helps me live some semblance of a normal life.

I agree with you MNC: The clinic I detoxed at feels that fibromyalgia and other myalgias (there are many) are a symptom of toxicity.

CG: Did you not notice improvement in  symptoms after using your sauna? 

I am so sorry you are in so much pain CG. Interesting about the EB as I was diagnosed with it MANY years ago, probably more than 10. I have read that most people with CFS will test positive for EB. Keep up with the sauna because after the detox I did with the sauna, my muscle pain went away after several years.

I am taking a supplement called C-M-K Citrate and it does seem to help a little especially when I take it with my pain medicine. It has Calcium, Magnesium and Potassium in it. I was also having bad legs cramps and the pain seems to have lessened a whole lot.

I'm not sure where the whole body pain is coming from but I do wish that it would go away. I cannot fuction lately. I just called and asked my doctor if she thought that Neurontin would help the pain. I've read that it has been working for fibro pain and has less side effects than Lyrica. I'm not sure that I can take it though because of my liver. Ugh! It's always something.

Elevated  alkaline phosphatase can also be from your gallbladder. Hope the ultrasound helps to solve the puzzle.  D

Hi CajunGrl,

I was dx with fibro in July 2008. I have tested positive for VERY high levels of antibodies to both EBV and CMV.

As to pain meds, I've tried darvon which didn't work, morphine sulfate which does work but my doctor doesn't want to prescribe any more of them for me, and now I have been prescribed the fenanyl patch (25mcg/hr). I haven't tried it yet....my husband just went to the drugstore to pick it up.

I started a thread on the Chronic Pain forum about fentanyl patches to find out more about them:

www.healingwell.com/community/default.aspx?f=16&m=1729164

If there are better pain meds out there that don't hurt your liver please let me know! I'm worried about the patch because I'm allergic to some adhesives.

Good luck!
JoAnn

I believe in Fibro, but I also believe is is caused by "something". I do not personally think it is a "disease" all by itself.

I have had the extreme muscle pain as you describe. In fact, it was my very worst symptom.

Since finally treating for EBV, CMV and very high HHV6a & 7, I have almost ZERO pain.  That makes life wonderful!

I also take Mag Tab SR, Fish Oil and D3.

Hey 1bitten:)

I asked my doctor about taking something for the Epstein Barr and she said that the steroids may help. She said that some people completely recover taking steroids. I've never heard of that but I tried it anyway since I think I have adrenal fatigue too. It's actually helping the pain a little and I'm even sleeping better.

After I get all of this liver stuff fixed, i will ask to start valtrex. Was that what you were on?

sorry to hear your in pain. I have severe pain also. I can not function with this level of pain. I currently take oxycodone 15 mg 3x a day and wear a fentanyl patch 50mcg. It helps but I am not pain free. Oh yeah I also take cymbalta. I think the cymbalta is making my liver enzymes go up a little.

I just started taking tumeric 500mg 3x a day. I heard this is good for pain.

I also take magnesium and b12 by injections. I truley believe these are helping me.
I tried lyrica and neurontin and they made me suicidal. Savella made me so ill I landed in the ER!

I just started aquatherapy and the pain is flared up a bit. Do you have a picc line? Glutathione may help your liver. you can order it ready to use. email me if you want the info its really cheap.

I also did trigger point injections and they really helped my shoulder muscles. They feel really good. trying accupuncture. will let you know if that helps.

good luck, if it continues I would see a pain specialist if youre not already.

hugs,
melissa

you are so welcome. I hope you find something that works!

melissa

I was diagnosed with Fibro in Nov 07. I started taking Lyrica and that has been a life saver for me. I do take alot - 150mg twice / day and it did take about a month before I started to feel the benefit. Now I only truly feel the pain when I Herx.

Others have mentioned Magnesium - that too has helped not only my fibro, but some of my other systems. My chest pain was horrific for a couple of months then I was given Imploded Mineral Water - which is a liquid from lava rock - filled with magnesium. Within 24 hours my pain reduced about 90%. Pain picks up substantially when I forget to take it. I wish I understood why!

Wishing you some relief!

Yes alot of people test positive for HHV. I happen to have both HHV6A and HHV7. HHV7 is one of the toughest ones to get rid of, as well as the majority will not test positive for that one.

I have been on 3 different anti virals...however, could not handle Valtrex. Both Acyclovir and Famivir did the very best for me. I am on Famvir now as my "maintenance" abx.

I do faithfully take Magnesium. I use Mag Tab Sr, which I understand is in Dr. B's guidlines. I also take 2400MG daily of Fish Oil