Re: My world fell apart when I developed fibromyalgia

[Guest guest]

My life fell apart too, in 1981, 1982, 1983 - when I was told I had fibrocitis,

with the term changed to fibromyalgia in 1990 - all the way to 2006 when a nurse

clued me in online what she thought my many symptoms were: Lyme disease, a

bacterial infection I had acquired from a known tick bite on my foot in Big Sur

CA in 1981, where I had spent time outside. I had gone to a health clinic a week

later, saying something's in my foot. They told me it was a tick, removed it and

I forgot about it. 10 weeks later, I had sore neck and shoulders, and 18 months

after the bite, I had muscle pain from head to toe.

And why? Because the tick transmitted a spiral-shaped bacteria called a

spirochete, which gets into the brain within 12 hours of exposure and starts

inflaming all the nerves. It also can corkscrew into tissues anywhere, colonize

and inflame. It likes the joints. It likes where there isn't much oxygen, like

old injuries. There are 100 strains in the US and 300 worldwide - so people get

different strains which affect people differently too, like soft tissue vs

neurolyme in the brain. Everyone loses energy early on because the bacteria use

up our magnesium in order to reproduce, so our mitochondria don't have the

magnesium needed for our ATP energy cycle, nor do we have magnesium needed for

300 enzyme reactions, so our bodies start to fall apart in every system,

including hormones.

People still don't know that fibromyalgia can actually be a bacterial illness. I

did test positive (via the iGeneX lab - www.IgeneX.com lab, IgG and IgM Western

blot antibody tests), but not everyone does who has the illness. Tests are not

perfect - 60-70% show positive even when we have the illness. There are 27

reasons why we may not show positive (www.canlyme.com/seronegreasons.html). So

knowledgeable Lyme-treating doctors go by history and symptoms. I saw the tick

that bit me, but many don't. 23 insects also carry the bacteria, and people can

transmit it in fluids and tissues, including from birth and breastfeeding. The

illness masquerades as 350 other conditions, since it can hit all parts of the

body. It can masquerade as lupus, autism, IBS, rheumatoid arthritis, MS,

Alzheimer's, Parkinson's, ALS, etc. Chronic fatigue, by the way, may be coming

in as a retrovirus - it's got the hottest research going right now. Lots of info

about Lyme and co-infections (babesia, bartonella, ehrlichia) available at

www.lymenet.org, including referrals to Lyme-treating doctors.

Our Lyme film is called 'Under our Skin. " Lots of people in it say they were

diagnosed with fibro first. A great book about what's been going on is " Cure

Unknown: Inside the Lyme Epidemic " by Pamela Weintraub.

I mention all this because all I heard for 25 years was that I had fibromyalgia.

I did not hear about Lyme disease, nor did I know what it was when the nurse

told me. I think it's only fair to mention it and let everyone research the

possibility. And some people have co-infections too - babesia, bartonella,

ehrlichia. I suggest googling for symptoms of those too to see if anyone matches

any. Each gets their own treatments.

In my case, I had Lyme only, and I went on oral clindamycin antibiotics, 150mg

every 6 hours, and my fibro pain of 25 years went to zero in a week's time!! I

am still on a maintenance dose of 150mg/day. We're all different when it comes

to which abx, which meds, which treatments work for us. All that gets discussed

extensively on Lymenet and other Lyme-related sites, like I'm in CA and we have

an outstanding educational site at www.lymedisease.org.

Btw, it's named for Lyme, CT where it was first reported in the mid 1970s. It

spread across the country and the world. Birds have flown the ticks everywhere.

It's a worldwide problem and needs worldwide solutions. I think it's very

important to learn about and educate about how to protect us, pets and the

environment with various kinds of tick/bug repellents and safe habits, and I do

a lot of educating about prevention these days.

Please ask me questions if you have them - thx - Robin

My world fell apart when I developed fibromyalgia

My world fell apart when I developed fibromyalgia, but in developing a

way to recover from it I created an amazing career helping others. My

methods also aided my recovery when I had a pancreatic tumour, and a

malignant melanoma. Having suffered from fibromyalgia symptoms

<http://www.forgetfibromyalgia.com> my aim is to help others recover

and put the pieces of their life back together only better than it was

before.