There are many outcomes of a chronic Borrelia infection. I have a great drawing but can't post a link here.

We know from Pubmed articles that Bb can cause:

Massive hydrocephalus; Hypersensitivity reaction to OspA (giant swollen joint); Bipoloar disorder in children (seen in NIH clinical trial); Congenital Lyme - fetal demise, malformations, stillborn; Cardiac arrest due to nerve damage; Alzheimers; MS; Stroke; Lupus or antiphospholipid antibodies; ALS or Lou Gherig's disease; Persistent brain infection; Immune suppression outcome or latent viral reactivation of viruses, yeast and bacterial infections.

A patients with CFS and FM -- The one we are most concerned with is the immune suppression outcome or latent viral reactivation of every pathogen we have been exposed to such as herpes viruses, HHV-6, EBV, CMV, candida, CPN, etc.

Everyone I know with "Infectious soup" due to an underlying Bb infection has the immune supression outcome of a Lyme infection. Those high IgG ABs have to mean something. I am so sick of hearing that if it's not high IgM it doesn't matter or mean ANYTHING.
[This Message was Edited on 07/23/2008]

Good article!

Die Lyme Die!



Bunny

If it weren't for the people posting here, mainly munch1958 about lyme I would have NEVER gotten the answers I needed and still be on the wrong path to recovery.

I am battling lyme disease, and CFS is a byproduct. I believe EVERYONE should get the Igenex test done by a competent LLMD. If you don't believe you have it, rule it out.

I saw the tick (it was so small I didn't know what it was and had a rash, but it was not a bullseye, which ironically most people don't get )

When I was first sick they thought I had a brain tumor. Then I looked like an MS patient, then a Parkinson's patient. I still get a slight tremor if I am overtired, but I have gone from being in a place where I thought I was going to die to slowly but surely regaining not just my life, but complete heatlh.

I am so astonished by people who have been ill for years and years who refuse to believe that perhaps Quest and LabCorp are not the right Labs to test for Lyme and refuse to believe that their illness could be Lyme.

I think they either don't really know what Lyme does to a person and are offended because they think their illness is so much more serious than Lyme, or they do know what it can do and are scared to be facing the stuff you have to go through to treat it like months to years of I.V and high dose oral antibiotics.

When I was first sick I thougth I wasn't going to need all those years of treatment, but I did and each time I switch antibiotics, or take a break which I do now from time to time, I get better when I start back up again. Always to a place where I am better than I was before the antibiotic.

I am also doing Methylation which has helped a lot, and I take a ton of supplements.

Good health to all...

P.S. I also fit De Meirleir's criteria of High R-nase L and Elastase and I have a clear Methylation block, in my mind and in the research I've done all caused by Lyme or i suspect Bartonella. I think Bartonella, or a Bartonella like illness, which is transmitted by not just ticks, but Gnats, fleas, Mosquito's etc., is making a lot of people really sick with things like CFIDS and Fibromylagia.
[This Message was Edited on 07/23/2008]
[This Message was Edited on 07/23/2008]

I think you could say exactly the same thing about CFS being the same thing as toxic mold poisoning (except with an added component of hypersensitivity to the poison that a lot of people don't get).

I'm of the tentative belief right now that some CFS sufferers have illnesses that are rooted primarily in mold, and that some have illnesses that are rooted primarily in lyme.

(After 18 months on this board I am starting to get a feel for which people fit into each group, too. Sometime I'll write a post on that and see what people think.)

I also believe that a fair number of CFS'ers have both toxic mold and lyme as causal problems.

These patients often (finally!) end up at LLMD's offices and get treated. Insofar as mold is also at work though, only so much progress will be made. I would suggest that anyone who's not getting well from lyme also look into mold.

Whether other factors besides lyme and mold are causal for CFS, I'm not sure. I do believe that those two things can be though.

I have been impressed with your analytical approach to things so it would be really interesting to me to see your survey analysis on what you think folks have.

Thanks for posting this article!

Like Redhummingbird and others who replied here, I owe my recent Lyme diagnosis to the lymies on here who educated about lyme and its connection to CFS.

I too resisted the possibility of lyme for a long time, especially since I was under the care of Dr. Montoya, who said " absolutely no way" could I have lyme. Well, I didn't recover on Valcyte!

I refused to accept the possibility of being sick forever, so finally got tested through Igenex a few months ago. My IgM activity was so high that I was VERY close to CDC positive!

I have been undergoing lyme and babesia treatment since early May. I am not feeling better yet, and don't know if and when I will. But at least now, I have another treatment to pursue and higher possibilty of recovery.

My LLMD also tested me for many things that no other doctor had - including Dr. Montoya - and from what I am learning every CFS and FM patient should be tested for.

One of the tests my LLMD ran was a urine toxic metals test. Turns out I have "Very Elevated" levels of mercury! Now I have yet something else to treat in the hopes of recovering.

I'm very happy to see that so far, there have been only productive and informative replies on this thread.

Erica

I think Dr. Forester needs to read "Mold Warriors". He only has a part of the overall picture.

Besides Lyme and toxic mold, which are the most common sources of biological neurotoxins, there are a couple rarer things that could be causal in our illnesses. Dr. Shoemaker explains it all in his book.

Forebearance

This is very interesting, thanks.

After 21 years with severe M.E./CFS & fibro, I have finally had my blood tested by Dr Andy Wright & he has found both Borrelia and cryptosrongylus pulmoni.

I had been diagnosed since late 80's with CFS. In Nov. '07 had my fisrt Lyme test....CDC positive. I have since come to realize Lyme has been my #1 problem.

30+ yrs. of sickness and am now looking forward to regaining somewhat of a normal life.

Thanks for the post, Linda

thank you for this article, i'm really convinced that i have lyme, esp since my kinesiologist has given me meds for anti-borrelia and other things of that sort, he says i still have (and had in the past) spirokeet infections, so its obviously present although i don't recall if i ever got a legit lyme blood test... are you going to take any treatment for your lyme???

great article! BUT...dr. demeirleir and others know that the fact that long-term antibiotics can help could be due to the fact that they also have anti-inflammatory effects.

i have had CFS for 15 yrs following mono. my RNase L was 1885, with normal being <50. accordng to demeirleir, this "almost always" means active virus.

it is possible many of us have lyme and the lyme has activated other viruses, but i am still skeptical about it being bacterial in my case.

i have heard about diseases like MS being linked to bacteria, but i have heard a lot more about it being linked to viruses.

i would be very shocked to find out that 90% of CFS patients have lyme!

sue

1 practice in louisiana is not a cross section of cfs sufferers worldwide. some areas will have more ticks and more infected ticks than others, and any half decent scientist should realise that. sure there are obviously lots of people whos lyme is diagnosed as cfs, but i know this isn't me and i'm not the only one. i know it causes lots of arguements on here and i really don't want another one, but we all have opinions and that is mine.
[This Message was Edited on 07/24/2008]

This is one article you should have just skipped over since obvioulsy it bothers you. Time and time again this has been stressed on this board.

Hey, ladybugmandy!

I wanted to note something. It's not only the Lyme bacteria and other bacterial co-infections that make people sick.

Those little Lyme bacteria produce a neurotoxin while they're living in a human body. The neurotoxin is what really gets you.

It messes up the immune system, which makes a person susceptible to getting bad viruses. And it also allows old dormant viruses, like mono, to reactivate.

Like you, I got CFS after mono and was very surprised to find out I had mold toxin poisoning. When you look at CFS from the neurotoxin perspective, it makes everything fall into place.

It IS pretty shocking, but I think it's going to turn out that 80-90% of people with CFS have either Lyme or mold poisoning or both.

Forebearance
[This Message was Edited on 07/24/2008]

everyone else is giving their opinions and i gave mine and said i didn't want to argue. its fine to make people aware that they might have lyme, but its ridiculous to infer that they definitely have lyme. my beef is with this doctor, not anyone who has posted on here, so get off your high horse and accept that you aren't the only one allowed to have an opinion.

mold can certainly cause illness but viral persistance also makes people unable to get rid of toxins and metals, i believe. a case can be made for almost anything when it comes to CFS it seems.

you may want to take a look at demeirleir's patent regarding treating MS and CFS with antibiotics. it doesn't say anything about bacteria...it has to be with antibiotics' anti-inflammatory properties.

sue

Some of you have asked why people deny the possibility of Lyme for so long. I can only tell you why I did it.

I got sick in 1986. In the mid-90's, my Rheumy told me she now had come around to the belief that all FMS is Lyme, due to working with Dr. Joanne Whittaker, a pioneer in Lyme research.

I am a logical thinker. I did not believe her for two reasons: 1) FMS patients are mostly women, and plenty of them are urban. Logically, Lyme patients should be male hunters and farm kids, since ticks are out in the woods. 2) Why would ticks bite women almost 90% of the time, and how are all these ticks managing to bite women who live in high rises in NYC? My Rheumy could not answer those questions, so I decided she was off her rocker, and reluctantly left her to go to another doctor.

Fast-forward to 2003. I had always been a kind, understanding person, with basically no temper at all. Suddenly, I started breaking into screaming rages that I could not control. I literally felt like I was posessed and sometimes wanted to kill people.

A couple of friends with FMS, who had long ago gone on to be dx'd with Lyme, told me once again that I had Lyme and that these were classic Lyme rages, due to the presence of borrelia in my brain.

My DH had put up with my physical miseries and my not being able to work, but this symptom threatened my marriage, so I finally got tested using the Bowen QRiBb, which was the cutting-edge test at that time, invented by Dr. Whittaker, whom I mentioned above. She is also the one who invented the ANA test for Lupus. My results on two QRiBb tests showed the highest level of Lyme infection a person can have.

By this time, the two questions that made me originally refuse to consider Lyme had been answered by research, so I could believe the dx. The answers are: 1) Women make far less antibodies to borrelia than men do. Many men are carriers with no symptoms or only mild symptoms. 2) Biting flies and some mosquitos also carry Lyme, and mice can have it too, not just deer. This is being kept quiet, esp. in places like Florida, where I live, since tourism is the #1 industry in the state.

I wish I had listened earlier. By the time I was correctly dx'd, after long years with misdiagnoses of both MS and FMS, borrelia had so altered my immune system that I was deathly allergic to all antibiotics except fluroquinolones, which do not kill Lyme. I had skin tests to confirm that these were true allergies, not just herxes.

Herbals have only helped a little....Samento helped the most. I can't afford HBOT, Rife, etc., and have wasted thousands of dollars on all sorts of other alternative treatments with no improvement, so I am through with fooling myself and spending my DH's money that he will need in his old age.

I have heart damage with electrical abnormalities and valvular heart disease, 4 reativated viruses, more than 90% of my pancreas is destroyed, I have a precancerous growth in my stomach, and another one in my right eye, I have severe disc degeneration in several places, I am hypothyroid, I lost my gallbladder, and I have brain damage that is rated severe. I have to avoid all but a couple of old, close friends who have never made me angry, due to the potential for rages, and I spend most of my time alone, waiting to die. In short, I am screwed.

So Lyme treatment is so long, grueling and scary that you would rather not go there? You bet it's rough, and it's expensive too, but I hope my story about what untreated Lyme can do has scared you even more. My life is hell, if you can even call it a life.

How many of you can honestly say that your so-called FMS or CFS has not progressed? As you know, the powers that be are still claiming these illnesses are not progressive. Whom do you believe?

I do know a couple of people who seem to have FMS without Lyme. They a have mild illness which has not gotten worse or spread over the years,and I suspect it is caused by another, less virulent pathogen than borrelia. They can still work, and drive long distances. They are a definite minority, IME. I ran an FMS support group for ten years,and those people made up about 10% of the group.

Please get properly tested. It's just a simple blood test, and it could save your life.

God bless you all, klutzo


[This Message was Edited on 07/24/2008]

your response is both kind of frightening but comforting at the same time lol, frightening in the way that if i do have lyme i have to consider how to get rid of it, and that's a scary procedure, because i don't wnat to get worse than i already am.. but comforting because i'm relieved that maybe this could be my ultimate answer, and i've only had cfs for 4 years now so if i'm approaching some sort of lyme treatment sooner than later, maybe it'll be easier to treat.

i've actually considered taking samento, and i'm bringing it to my kinesiologist since i have an appointment, i'm just nervous he's goin to tell me it's won't work well with my body, because i'll probably still want to take it.. other than samento is there anything else you suggest?? i really just want to get rid of this

Have you been tested for lyme? If you think you may have lyme, you should get tested ASAP.

If you've already been tested through traditional labs, you should get tested by Igenex. I can post detailed Igenex testing information, including the test requisition form to be signed by your doctor and the specific tests to order.

Let me know!

Erica