Misdiagnosed with Fibro and CFS- It's been Lyme all this time!

I have relied on this forum for many years. I find comfort coming here and relating to people as well as finding answers. For 16 years I have been struggling with pain and fatigue and a whole bunch of weird symptoms that we all have. Dx with Fibromyalgia and CFS. Have done all the things the doctors have told me to do, have tried alternative medicine, supplements, gluten free, dairy free, sugar free, IV vitamine drips, shots of Gamma, oral appliance for my mild sleep apnea, etc... although some of these things helped somewhat, I kept getting worse.

In March my symptoms were more constant and nothing was helping. I then got some hints from the universe that it may be Lyme disease. I started having really bad cognitive problems, way worse than any fibro fog I had ever had, I started dropping things, and I started having this weird walk (my knee would just go out, like I was a marionette puppet with a bad puppeteer). All neurology tests and MRI's came back normal.

I watched the documentary "Under Our Skin" about Lyme disease, started pursuing this and researching it. There is all sorts of controversy that comes with Lyme (I thought Fibro and CFS were bad re: doctors but I am finding Lyme is way worse! politics and money).

But after much work and effert on my part, I finally got an answer that came with a positive Lyme test! I found a lyme literate doctor and started a cocktail of antibiotics this week, and lots of detoxing. It's been Lyme disease this whole time, 16 years of suffering could have been avoided if my doctor many moons ago gave me some antibiotics. Now I am looking at a much harder time trying to fight the bacteria, and possibly will never be 100%.

I just thought it was important to share my story in case it helps anyone else. I would suggest people interested watch that documentary Under Our Skin, you can find it on line for free. And if you think your Fibro may actually be Lyme, start doing a lot of research and find a lyme literate doctor to help you. You can always ask me questions as well.

Be well, Susan

Had a friend that was diagnosed with Fibro and had Lyme for over twenty years. Lots of health issues when it's not found early. Good luck and God Bless.Also did you have the rash on face that comes with lyme. Hope you start feeling better soon.

The CDC stated that Lyme is the most over diagnosed illness they have ever tracked. I have seen many people who were falsely diagnosed with Lyme – endured months of powerful antibiotics which made them sick and in the end they were not helped....and then had severe gastrointestinal problems....and fibro and drained bank accounts.

The proof will be in 6 months to a year and how you are doing. We all get excited when we think we found a cure and the chemical rush of hope makes us feel better – temporarily. Right now the FDA has several labs under investigation for reporting false Lyme positives so the scam doctors can treat people.

Just be careful!!!

I believe those not responding to Lyme treatments are not due to false negatives but inadequate inappropriate treatment of those who have detox issues and or are highly toxic which are many people.

Then it you will feel just worse and worse and never better.
This doesn't mean you don't have it but the contrary.
You probably have it and many other infections causing toxic overload. Treating creates more toxins and it's those toxins making your symptoms so imagine adding to them.

Its complex and not simple. CDC treats it as if every person has healthy immunity and detox abilities which if was true there would be no people sick so much for so long.

Catch Lyme as early as possible before it can take hold.
Its good to rule it out if you have symptoms along with many other infectious and vector borne causes. There is a long list.

Standford now treats CFS as infectious causative.
FMS can be caused by it and many believe most auto immune health issues are. It's becoming more and more accepted. Including MS and ALS and Others.

Getting tested just helps you see your full picture.
Everyone is different.
Finding a doctor to run a slew of tests to match possible causative
Infections not always readily available but more and more

Those of you that want to know more about Lyme disease, please go to the Lyme forum. They will answer all your questions. We are sticking to fibromyalgia in this forum.

If you have had fibro for a while and it's stayed about the same, I wouldn't be concerned about Lyme. Fibro isn't a progressive illness but untreated Lyme disease will get worse and worse.

Sherrine