CFS vs. Lyme

Purplepug, I can relate. I was diagnosed with cfs and a friend suggested Lyme. I've had LD all along. Cfs is one of the 300 illnesses LD mimics. I'm now reading Cure Unknown by Pamela Weintraub. This book will change the way you see your illness.
=]chloe

The same thing happened to me. I was initially told I had CFS. A family member kept telling me there had to be more to it. Long story short, it ended up being Lyme.

CFS… (insert multiple curse words here)

CFS is not a disease… it's terminology for a group of SYMPTOMS. Used because the medical field has no idea what causes it.

But WE do. Those symptoms (or CFS) are due to other problems in the body and over and over and over again I've read about people who were diagnosed w/ CFS (me and likely most other posters on this forum) because doctors failed to consider anything else, like lyme & co. The lyme infection itself causes CFS and a barrel full of other problems.

Nowadays, if ANYONE within earshot of me mentions CFS I politely tell them it is not a condition but a name for symptoms and they need to find out what is really wrong. And depending on how that conversation goes, I suggest finding an LLMD.

purplepug—I bet if you perused this site for a few days you'll either find a lot of familiar stories or you'll at least have more info to keep searching elsewhere. Wish you luck!

-p

Purplepug, you're story sounds all too familiar. In 1992 I was diagnosed with CFS after having a "flu" that I never recovered from. Thousands and thousands of dollars spent and countless doctor visits (natural treatments only) since then have failed to get me well. I had pretty much resolved myself to the fact that this was going to be my life until I breathed my last breath. A few months ago out of the blue my chiropractor asked me if I was ever tested for Lyme Disease. Long story short, I was tested through IGenex and my results came back weak positive for Lyme, positive for Anaplasmosis, and my CD57 was 8. My doctor used those test results and my symptoms to make the Lyme Disease diagnosis. Honestly, I am still having trouble believing that I have Lyme, but at the same time I know that I have nothing to lose by moving forward with treatment. After my doctor explained the different treatment options, I decided to start on the Cowden Protocol because at this point I want to go the herbal route rather than taking antibiotics. I started on the protocol 5 days ago, and as crazy as it sounds I'm hoping for a herx because that would be the proof I need to confirm that I do indeed have Lyme and not just CFS.

I would say that you have nothing to lose by being tested for Lyme and the co-infectants.

I would say mold, lyme or both for CFS. I personally don't believe that CFS is caused by a virus, but that is me and I'm no doctor. I think a lot of us carry lyme and one day something triggers it to come out.

I had a toxic black mold growing near my desk that was eventually remediated. I think I've had lyme and mold for a long time now but my issues just started. I have fatigue too and no reactivated viruses have come up on my work ups.

I think you might not have gotten immediately sick, but if your body is unable to detox the black mold from your system, it probably has accumulated and made you sick. Add lyme on top and you would be very sick

Hi, Purplepug and all others who have found this out,

Me too! In 1998, dx with CFS, CFIDS, EBV, later Fibro, autoimmune, adrenal insufficiency, pituitary dysfunction, sleep disorder, low hormones and more. In 2009, new doc said "I think you have Lyme." (I did get sick in upstate NY and was tested, but tests were negative or one or two bands.) I had always herxed on doxycycline and took it for years for autoimmune, but eventually it made me worse.

Took me a while to accept this, but I finally paid for the Igenex test and it was positive.

Mold is a big part of this for some of us, and getting the toxins out is necessary to getting better. I was being exposed at my office for 10 years, and at various homes with leaks. I think stachybotris. Once I got Lyme, I couldn't hold my head up in there, it felt like my brain swelled and I had to lie down. The combination, or the viruses that reactivated, took out my immune system and I got all kinds of other pathogens, which got into my organs.

I totally agree that the tests are very misleading.

It made a huge difference to me to get treated. I'm allergic to the recommended antibiotics, so take a couple of oral ones, plus the most of the Cowden herbs. Still working on the toxins.

If one has co-infections, it's trickier. I'm pretty sure I had/have both Babesia and Bartonella, but have not been tested. The drug I take for autoimmune is supposed to help with Babesia. In the end, I would like to go herbal, but so far, if I go off antibiotics or the plaquenil, I get worse fast.

My genetics are susceptible in that I have a lot of methylation defects and other detoxification problems. The great majority of us have some of these and that means our bodies get overwhelmed with biotoxins.

Wishing you the best of luck in finding out!