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The CFS/Fibro Lie

The chat room is located at MSN Chat in the Health section.
The chat room is open when I'm not too busy and usually in the evening hours EST.
The owner is Peace4you2 (me) and another host is momba4.

Want to go straight to the links?

What is the supposed "lie?"
More and more people who have been diagnosed with Chronic Fatigue Syndrome and/or Fibromyalgia are finding that the cause of their suffering is actually undiagnosed and untreated tick-borne disease (diseases contracted from ticks), usually at least Lyme Disease although many people have multiple tick diseases. So the lie is what is told to millions of suffering people out there diagnosed with CFS/FM... that they couldn't possibly have Lyme Disease. This is totally wrong.

Now before you say "but I was never bit by a tick", you should know that the size of nymph ticks can be as small as the period at the end of this sentence. Also, that supposed "bulls-eye rash" is basically a flop... Most people who are infected never even get or ever see a rash, let alone a tick bite. Actually , a recent study has shown that most of the time, the rashes associated with Lyme usually don't even look like a bullseye when they do occur. In addition, according to massive anecdotal evidence and also some early research, Lyme can be passed sexually during unprotected sex if the infected person is untreated. It can definitely be passed in utero (to unborn baby) as well if the mother is untreated, causing 'congenital lyme disease.'

Now before you say "but I tested negative for Lyme Disease," you should know that:

1) Lyme Disease tests are notoriously inaccurate. The two tier ELISA followed by Western Blot antibody testing done by most laboratories is false negative in many many cases. The diagnosis of Lyme Disease is supposed to be a clinical one according to the CDC. It should be based on symptoms, history, risk factors and lab tests might help indicate the infection. There are a few good labs in the United States that specialize in tick disease testing which are more apt to find the infection if it's there but...

2) The bacterium that causes Lyme Disease, Borrelia burgdorferi (Bb), is a spirochete. That isn't that important I guess except you should know that, unlike most bacteria, Bb hides deep inside the tissues and even inside our own cells! It also stays away from the bloodstream where it is easiest for the person's immune system to see it (and also for antibiotics to kill it easily but that's another story). In other words, your body has a very hard time seeing the bacteria so it can't make antibodies to show up on these tests!!

3) The final straw is that after being infected for a while, your immune system starts to fail. It is both directly and indirectly attacked by the Lyme (and/or the other tick borne diseases).

How dare you say CFS/FM isn't real!
I am most definitely not saying that Chronic Fatigue Syndrome and Fibromyalgia are imaginary illnesses made up by hypochondriacal people. Being a former PWC / FMer myself, I have always despised the morons who tout that theory / lie / falsehood / ignorance. They told us that all we had to do is stop being depressed and just exercise! How do you do that when you can barely walk?!?

What I'm saying is far from that! These diagnoses are incomplete and millions of people are suffering horribly worse than they have to. The diagnosis of CFS and/or FM is the lie in most cases, not the disease or the suffering.

The fact is, it is a known fact that most people who have Lyme Disease are undiagnosed or misdiagnosed with something else based on statistical analysis of how many cases are actually reported. Some people have actually discovered that they were misdiagnosed with Multiple Sclerosis (lyme shows lesions in mri's), ALS, Lupus (lyme can show pos testing for lupus), alzheimer's disease, on and on. I focus mainly on the CFS/FM group because (I was once in that group and) they are the most likely to be told they have CFS/FM solely due to the fact that nothing shows up on tests. But, as you have read, in Lyme Disease that is not uncommon!

Who are you to give this information??
Well, I figure I'm pretty qualified to just pass along information. I've been doing it for years to help fellow people with CFS/FM find a doctor to get some symptomatic relief. As for this information I'm writing here, you see, I didn't make any of this up. This information can be found online and through other educated Lyme patients who see very educated physicians (aka Lyme literate MDs). Personally, I was told I had CFS and FM for five long, horrible and crippled years before I accidentally found out the truth. I still didn't believe I had Lyme Disease even after the better testing indicated I did have it along with three other tick diseases! I figured I would try treatment because I didn't have anything to lose. I was almost dead anyway. Sure enough, it really was Lyme Disease and I met tons of others who endured long term suffering like me when, if it had been treated right away, Lyme Disease could have been just a nasty memory.

Now, I do what I can to pass this information to others... people who are now in the position that I was in all those years. If I had only gotten this information years ago, maybe I wouldn't have suffered for so long and maybe it definitely wouldn't be so difficult to treat now. I was very active in the CFS community trying to educate people about this disease that was crippling thousands of people and yet was being ignored or even laughingly called "the yuppie flu." Give me a break!! Anyway, I tried to give this information through the usual support groups but for some reason the powers that be would block this information. I wasn't even saying that all people diagnosed with CFS/FM definitely have Lyme and I was still considered a problem. I just don't get it and I don't think it's right. There is nothing wrong with giving information.

Why did you choose this name for the chat room??
Ok, the name of this chat room could definitely be inflammatory if a visitor doesn't know the true idea behind it, but I had no choice. I couldn't name this room Lyme Disease (although I tried) because most people who have Lyme Disease are misdiagnosed with something else and those are the people I was trying to contact... why would they come in? And I also didn't want to barge into chronic illness support chat rooms and give my opinions and help to people who may not want it and/or are not ready to hear it. I don't think that's right. People are sick and don't need someone in their face giving them information they don't want when they really just want support and caring. I feel sorry for people who are not willing to hear this information, but it's their life and that's fine.

This is interesting. Where do I go from here?
The first thing I tell everyone is to read, read and then read some more. Inform yourself so you know what to ask of your physician and then if/when he/she tells you that you're wrong (or desperate or listening to wackos online instead of him/her), you will know that you're right based on all that you've read. Then you can go about finding a physician who will help you.

Chat with others online who are being treated for Lyme Disease. The thing about this disease is that those who get the diagnosis after being told they had something else are all too willing to tell you all about it and to help you get your life back too. Other people have helped them (me) and now they help you! The links at the bottom of this page are a good starting point. They are far from totally comprehensive. The LymeNet discussion board is an excellent starting point because you can ask people to email you some names of LLMDs in your general area and you can also post questions about anything and the very friendly people there will help you out. And there are a ton of people on there too!

You know what? I think you're totally wrong and I hate you!!
That's ok. You're entitled to your opinion even if it's wrong (just kidding... opinions can never be wrong.) Basically, people believe things for certain reasons and don't believe things for others. I can't really figure out why some people won't even examine this possibility and actually get hostile about it. Fear? Anger about past disappointments? I had all of those and yet I was able to at least give it a chance.

Can I judge people for their feelings? No. Will I harass people until they bend to my will and try to look into Lyme as a possibility? NO. Because treating Lyme is no piece of cake. It is very difficult especially if the person is late stage (symptoms of CFS/FM are late stage). For me though, it really wasn't that bad when I thought about it because I was suffering so much already and at least my 'new' suffering was because I was killing off the bacteria and not because it was killing me.

I also don't push this on people because if someone doesn't really want to do it, when they start having their first herxheimer reaction they will just bail on the whole thing. They will give up right away when they're not cured after a month. People have to have an incredible desire to get well and have to mental power in them to try things that seem unbelieveable. Who wants to believe that they really could have had something treatable all this time but apparently suffered for no damn reason??? It happens all the time. I was sooo angry when I realized the truth. I steamed for many weeks actually and visualized all the horrific things I wanted to do to that infectious disease doc who told me many years ago that because my western blot was negative that there was no way I had lyme disease.

So, you can think whatever you like. People in my position have heard it all before and it's kind of old hat by now. Be a cynic go ahead. But your life isn't going to get any better with that state of mind. If you prevent others from getting this information then you should really think about why you're doing that. If this information is wrong (it's not) then they will find that out themselves. Information is power. Ignorance is weakness.

Forget you, how can I read about this stuff myself?
Here are some links to information online. Most of these links have links to even more information so look carefully through them.

Of course, if you have any questions about this stuff, you can always email me at


Dr. Burrascano's Diagnosis and Treatment Guidelines (the Lyme "bible")

ILADS Basic info

Lyme Info

Lyme Misdiagnosed As...

LymeNet Discussion Group
(Ask questions and also ask for lyme literate MD)

Info for newbies to LymeNet

Good labs for better Lyme Disease testing:

Lyme Disease - The Unknown Epidemic

Wilder Network

Great links on this page:

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