Sunday, August 16, 2009

A Note on Lyme Disease

Something I have yet to really mention on this blog is my dual diagnosis of Lyme Disease (which came in 2004 -- eight years after becoming ill). This is in part because I've always struggled with how big a role Lyme is actually playing in my case, and on when, where, how or even if I really have it.

Testing for Lyme is complicated, confusing and not very reliable. False negatives are common. I was negative for Lyme with standard tests through regular labs, as are (from what I understand) most patients if tested years after the initial infection. I tested positive, however, through a specialty lab called Igenex. This in and of itself might leave some doubtful, as Igenex (with good reason) considers certain bands indicative of Lyme Disease that the CDC does not. But I was not just positive by Igenex standards; I was positive by CDC standards as well. Twice. I'm told this is quite a feat, as antibodies may no longer be present so late in the game, and the Lyme-causing bacteria (known as B. burgdorferi) are not always easily detectable. Apparently, they are a bit sneaky, and like to hide.

Given these results, and thus assuming that Lyme is a contributing factor in my case, how did I manage to contract it on top of viral-induced ME/CFS? Two possibilities come to mind. I did once have a tick bite as a child. I was about 11 years old, and found a tick on my back almost immediately after it bit me. It was not engorged. My mother removed it with tweezers, and that was pretty much the end of it. I never developed a rash or any other symptoms, so we didn't think much of it. Is it possible I contracted Lyme then but it remained latent all those years until I got mono, sending my immune system into havoc? Maybe, though I'm skeptical. I was quite vibrantly healthy up until that fateful day I fell sick, and there's no doubt that my illness had a clear and sudden viral onset.

However, for a few months previous to that onset (following a trip to Colorado), I remember feeling unusually tired quite a bit of the time -- almost like I was constantly fighting off a cold that never actually came to fruition. The fatigue was not anywhere near enough to interfere with my life at all, but it was enough for me to take slight notice. This makes me wonder if I may have somehow contracted Lyme during that trip, perhaps unknowingly getting a tick bite while hiking around a bit in the Rockies. Then, when I came down with mononucleosis a few months later, my immune system went berserk on me, ultimately resulting in ME/CFS.

I will never know for sure, I guess. Still, I feel ME/CFS to be my primary issue; not just because of the viral onset, but because I fit that picture so much better than the Lyme one. I don't tend to relate to Lyme patients as much as I do to those with ME/CFS. I don't have joint pain, tremors, numbness (other than from poor circulation) or all that much muscle pain unless I over-exert. Also, if I were to say what my most debilitating symptoms were beyond or even above the severe exhaustion, they would be orthostatic intolerance and post exertional setbacks (a worsening of all symptoms upon even the most minor of activity) -- the latter of which is considered to be the hallmark of ME/CFS. This is true of Lyme as well, of course, but it is something you see more distinctly and profoundly in ME/CFS, it seems.

It's also quite plausible that chronic Lyme is yet another form of ME/CFS; that is, if ME/CFS is caused by an infectious agent (viruses or bacteria), the bacteria that causes Lyme could be one of those possible triggers.

Of course, all that being said, assuming I do have Lyme, it is clearly complicating my case. I have tried a multitude of treatments for it, just as I have for ME/CFS: a growing list of antibiotics, mepron, herbs, diets, protocols, IV's, nutritional supplements and alternative/natural therapies. Thus far, nothing has worked.

So, what do I do after being diagnosed with two illnesses that are poorly understood and lacking in viable treatment options? The only thing I can: keep trying, keep searching, keep looking for answers, and keep hoping.

For a brief trailer on a newly released documentary on Lyme called Under Our Skin (now in theaters), check out the video below. It is a must-see.

*Note: For those who are more knowledgeable about Lyme than I am, please feel free to correct me if I got anything wrong. I am much more well researched in the area of ME/CFS than I am in Lyme Disease. :-)

For those looking for more info on Lyme, please see some of the websites linked on this page.


  1. Have you considered the Marshall Protocol for treatment?

  2. Hi, Gren,
    When first diagnosed, my doctor at the time did run a D-metabolites test and actually submitted the results to Dr. Marshall for his interpretation. Apparently, according to those results, they did not think I would be a good candidate. It's been so long that I don't remember the details as to why anymore. It's been awhile since I've read up on that protocol. I may look into it again. Have you had success with it?

  3. Chronic Fatigue in my experienced is associated with depleted glutathione levels. We all produce less Glutathione from the age of twenty but some people run low earlier. Toxins are sometimes associated with low levels because Glutathione is used up detoxifying the body. Any way taking Glutathione does not help because it is broken down in the digestive process. There are precursors that have been verified and quantified to increase Glutathione levels in our cells. I did, it's wonderful.
    Glutathione is essential for cell health and all diseases start at some level of cellular dysfunction.
    Any how have a look at what Doctors say.

  4. Hi, Peter. Thanks for visiting my blog. I am familiar with the theory of glutathione depletion in CFS. I've read much on the subject and even corresponded a few times with Rich von Konynenburg, who I believe originated the theory. I'm also very familiar with Dr. Cheney, and am anxiously awaiting getting his new DVD to watch. :)

    I could not tolerate glutathione directly, as you said. It made my condition worse. I have tried taking precursors (various forms of whey protein, etc), but to no avail. I have also tried the Yasko protocol and the simplified methylation protocol. Alas, no luck yet. But thanks for raising the point. It's an important one, as some certainly do see success with it. I may try it again.

  5. It sucks that you have Lyme on top of ME/CFS, but if you have to have it, it's lucky that you tested so definitively for it.

    I hope you find a treatment that works soon.

  6. Hi Laurel,
    Have you looked at Low Dose Naltrexone ( LDN )? I have had ME/CFS for 30 years, some of that time bedridden, some housebound. I've been taking LDN for 3 months & there is a definite improvement in energy & brain fog. It does not appear to be a cure, but greatly improves quality of life.

  7. Thanks, Cinderkeys... it's always nice to hear from a fellow Arizonian! :)

    Peony -- I have not tried LDN, but it's funny as I've been reading a lot about it recently. My fiance (who also has severe CFS) did try it w/o success, but I've heard of others doing well with it. I am definitely going to bring it up to my doctor! He's a naturopath so prefers the natural route, but he did put me on Valtrex so he is open to regular Rx's too. The Valtrex did help with my cognition some -- I wouldn't be able to have started blogging otherwise! :) Thanks for the suggestion.

  8. Holy cow, your fiance also has severe ME/CFS? This is off-topic, but with no one in the caregiver role, who helps with activities of daily living?

    I wanted to ask where in Arizona you were (I'm in Tucson), but you don't give an e-mail address in your profile and I figured you left it publicly vague for a reason. You might consider picking up an e-mail account that you use only for the purpose of your blog. Chances are other people would like to correspond privately as well. :)

  9. It is difficult at times to figure it all out that's for sure. I had some subtle symptoms of CFS before I got bit by a tick and was infected with Lyme and coinfections. I feel that my diagnosis came mostly from my LLMD's expereince, insights, clincial exam and the Igenex test too. Some day they may have a test, but really it is not too many years ago that doctors relied on their intuition and medical training and not blood tests alone! My Doctor believes I got CFS from the Lyme....I read once in the CFIDS Ass. Chornicle tht bacteria like Lyme can cause CFS. Will we ever know for sure? I don't think so. Either way, it is hard to manage two nasty illnesses. I am sorry you are doing so poorly. Wishing you stength and healing.

  10. I can relate to this post. It's so hard to know with chronic lyme and cfs. At some point they end up looking like the same illness. I've heard that some of the top LLMD's and ME/CFS doctors are talking about this very issue.

    My most disabling symptoms are the same as yours. No treatment (except Valcyte) has helped.

    It is good to know that Valtrex has helped your cognitive symptoms (you write so well). Mine seem to be declining so I may try Valtrex once I'm done with Valcyte.

    Sometims I wonder if there are a bunch of us with true ME. It would be nice to have the subsets of ME/CFS clearly defined so more research can be done with the true neurological illness like ME/CFS.

  11. Did you read the recent article on Lyme by Dietrich Klinghardt, which was posted on He said people are getting Lyme from mosquito bites and other ways of transmission, not just tick bites.

    I may also have Lyme but never did the Igenex test because I wasn't going to take antibiotics for 2 years and make my ME-CFS worse.

  12. For any readers who might not be familiar with ME/CFS, the CDC's "empirical definition" is rather tragically misnamed.

  13. Hi! Just found your blog. Here's my story of Severe M.E. and me: I'm trying this at the mo:

  14. [I had to delete my previous comment to make a change, so am reposting it here]

    Thanks for all the comments. Cinderkeys...Yep, regretfully my fiance also has severe CFS and is wheelchair and mostly homebound. He's been sick for 25 years. We actually met online (see my original post for the story), and he currently lives in another state. So it's a long distant relationship right now, as we are both too sick to move unfortunately. :( He's been able to fly out to see me a couple times (including to propose), but it's tremendously hard on him. He's a great guy, and I feel tremendously blessed to have found him. :)

    Regarding caretakers, my fiance uses a homecare service for help. As for me, I fluctuate b/w getting help from my parents and getting help from my neighbor and her daughter. I'm lucky on that front as I used to have to use a homecare service and they stunk. :)

    Good point on email... I'll include a link on the sidebar.

    Renee & Terri. It is definitely all very confusing, and frustrating to have so little answers.

    I agree it's important to have the subsets of ME/CFS (and possibly Lyme) much more clearly defined for research and other purposes. Unfortunately, the CDC is trying to do the exact opposite at the moment, using the empirical definition and lumping us in with people who merely feel "unwell." Hopefully with enough pressure that will change, though.

    I took Valcyte before Valtrex as well. I seemed to notice a difference in cognition shortly after making the switch. Hopefully you will too, Terri!

    Janis -- had not heard of that article.. interesting!

    Here's hoping we all get better soon.