Tuesday, February 7, 2012

Lyme Disease

Over the years, a number of people have emailed me about Lyme Disease. Their suggestions are invariably the same - "Do not forget about Lyme Disease. Your daughter very well might be suffering from Lyme Disease."

Certainly Lyme Disease and ME/CFS can coexist.

Of course Lyme Disease is both a difficult illness, and a difficult diagnosis. Testing can be done in a variety of places with a variety of results. Igenex is seen as the "gold standard" lab for western blot testing. Reading western blot testing is very much like reading Rorshach tests. It is heavily subjective. In spite of Igenex's superior western blot tests, Lyme Disease remains a clinical diagnosis.

With an equivocal diagnosis for Lyme Disease, it is difficult for a reasonable person to embark on antibiotic protocol that might cause as much damage as the illness itself. Antibiotics tear up the gut. However, there are other treatment options for Lyme Disease. An excellent place to start learning about Lyme Disease is Scott Forsgren's website betterhealthguy.com. Scott does us all a great service with his website.

The diagnostic situation regarding Lyme Disease very well might be changing. Advanced Laboratory Services in Sharon Hill, PA has developed what looks like a clear diagnostic test for Lyme Disease. Clarity in Lyme Disease diagnosis might have arrived in the form of this culture test that grows spirochetes in the blood. (A positive culture test is accompanied by a nice color photo of the spirochetes.) Most likely this culture test is the missing link. Incidentally Dr. Burrascano had a hand in the development of this test.

Information about the Lyme Disease culture test can be found here. Scott Forsgren writes about it here.

At the moment the test, which is easy to do, is seen as "investigational". Advanced labs is in the process of having the test validated. It is expensive, at close to $600, and the test, most likely, is not reimbursable. However, this test might be a worthwhile expense - as it brings great clarity to a very important variable in neuroimmune illnesses.

Speaking of clarity, there is an excellent article in the NY Times today by David Tuller. This article outlines the "difficulties" that ME/CFS research has encountered in the last year or two. It also presents the idea that, within all the negativity, a positive force field has been constructed in which serious research can move forward.


  1. I have my fingers crossed about this test. Hope it is validated.


  2. Thank you, Chris...another blog posting rich in informative, useful news!

  3. After our own experience, I fully expect to see a large percentage of people who have thought for decades that they had cfs/fibro actually discover they have lyme. Oh boy, and will they kick themselves for not pursuing different lyme tests before that.

  4. I meet the International Consensus Criteria for ME having (or had in an earlier phase of the illness) every symptom listed in the criteria. Given that, why would I consider being tested for Lyme?

  5. Frankly,I do not recall anyone explaining what the differences are between lyme and ME. Someone said there may be a slight difference in post exertional malaise in that it may be more pronounced in ME. It would be nice to know any differences.

  6. An "investigational" and unvalidated test for $600?

    Excuse me, but didn't we all gather already enough experience over the last two years with expensive unvalidated tests?

  7. One anonymous commenter said: "Oh boy, and will they kick themselves for not pursuing different lyme tests before that."

    Well, I would be quite happy if scientists would gather enough evidence to prove that all (or even most) CFS cases are actually "Chronic Lyme". And I would be on the forefront to lobby in my country that tests would be made available. Until then, I am pretty certain it will be those who pay $$$ for unvalidated tests, that will kick themselves – as was the case in the past with so many tests that are being pushed for CFS.

  8. May I suggest you investigate the Marshall Protocol at mpkb.org (as well as CureMyTh1.org & Bacteriality.com) to learn what they are doing with disease processes such as Lyme, CFS/CFSID and a myriad of others. I stumbled upon this method of treatment for chronic disease and now have hope there will be an eventual resolve to the perplexing and confusing illness/es that most of medicine hasn't been able to deal with.
    Wishing you the best in your journey

  9. Thanks for posting this Chris! After 15yrs of me/cfs I found I have lyme and just found out my daughter has it too. I'm hoping the gcmaf will help with the other me/cfs/lyme treatments. I am finding more and more me/cfsers with hidden lyme and co-infections. I may splurge for the Frye live blood smear someday when I get the money. TC, Karen

    1. Karen,

      Do you meet the International Consensus Criteria for ME? If so, how many of the ICC's list of symptoms do you have (if you don't mind sharing)?

  10. I notice in you left hand column that you are still raising money for WPI...still correct?

  11. Keran, I did the Marshall Protocol for 3 years and it did not help one bit with PEM, lack of energy and stamina, neuro-cognitive problems or any issues except back pain, which it did help.

  12. I live in St. Paul that's what caught my eye about this blog.
    This is what I did to help me improve.
    Basically I tried to build up fuel in my body by eating and getting the fuel moving by walking without burning all the fuel up by walking to much.
    Note: I tried to improve by building up my fuel and not do the walking but this didn't work for me.


    When I first got cfs I lost my appetite and wasn't eating very much. Looking back I believe this was something that made my cfs worse. My body wasn't getting enough of what it needed which made my cfs stronger and me weaker.
    Later on I was always hungry. I would eat and 10 min. later I was hungry again. I figured this was my body telling me whatever it needs to heal it's not getting enough of it. So I started eating 4 times a day. Something around 7 a.m., 10 a.m., 1 p.m. and 5 p.m.. If I got hungry in between I would snack on something. Usally yogart, nuts or fruit (bananas really help). I tried power bars and power drinks. Power bars helped with my hunger craving but I never really got any energy from them.
    Besides junk food I didn't try to eliminate any other food. I didn't want to eliminate something my body needed.
    Once I started feeling better I didn't eat as much. After 2-3 days of doing this I would end up crashing. It was obvious I couldn't cut down on my eating or I would crash. I also started eating everytime I went down. I noticed that after about an hour I would come out of it. These 2 things verified to me that I needed to eat in order to get whatever my body needed to help me improve.
    Eating like this was helping me but it still felt like my body needed more.
    Besides all the vitamins I was taking, I was taking a whole food supplement called Bio-Strath. It seems to give me a little boost. One of the main ingredients is saccharomyces cerevisiae. I looked it up and it's a yeast. That led me to nutritional yeast. I read that 2 tablespoons of nutritional yeast provides 52 percent of the recommended daily amount of protien. I started taking 1 tablespoon in the morning with what I ate at 10 a.m. and 1 tablespoon with my dinner at night. This really seemed to help give my body that extra whatever it needed. I've tried more but my body gets hot and I don't feel right. I started taking nutritional yeast about 3-4 months ago.
    I did put on 30 pounds by eating like this. I figured I didn't have much choice. If it worked I would improve and if it didn't work I would stop eating like this.
    When I'm in a crash eating doesn't help. I just have to wait to come out of it.
    My post was to long I had to split it this is #1.

  13. Walking
    Somethings I kept asking myself that didn't make any sense to me:
    Why after I couldn't work anymore (I had a physical job) and I was resting that I got worse and ended up being bedriddin for 3 weeks?
    Why after sleeping for 10-12 hours I would feel worse then I did before I went to sleep?
    Why any progress I made before a crash, I would go back to step 1 after a crash?
    I came to the conclusion that my cfs was taking over my body the more inactive I was. I needed to try and start walking.
    When I first started walking it was hard. I would walk between a half block to a block. I made sure that I didn't walk to far away from the house in case I crashed so I could get home. Sometimes I would walk back and forth in a room in the house if I didn't think I could make it very far. There were times I would lay there for an hour or two trying to summon enough strength to walk. If I couldn't find the strength I would massage as much as my body I could just to try and get some blood flow.
    Early on when I walked I would crash after a day or two. A crash would last me 5-7 days. After a crash I would brush myself off and pick myself up and try again. After a while my crashes were getting shorter. They went down to 3-5 days. Then down to 2-4 days. The time between crashes was getting longer and longer. Also, one of the things I noticed was my morning blahs weren't lasting as long. I was improving.
    About 9 months ago I was mentally worn out from pushing myself. I decided to take a break from walking. After about a month of resting and not seeing any physical improvement I decided to start walking again. Once again I started crashing after just 2 days. A crash would last about 2-3 days. This went on for a month. This verified to me that I needed some activity or the cfs would take over more.
    I try to walk 2-6 times a day for 20-30 min. Rest at least an hour in between. When I tried to walk longer then 40 min. I would end up crashing. More short walks works better for me then a few long walks.
    When I'm in a crash I don't walk. My cfs gets worse if I try to do my walking.
    It took some time and I seemed to improve in stages but between the eating and the walking I improved dramatically. I can't ran a marthon or exercise like a madman but I feel normal around 80-85% of the time now. I've been able to cut out what I eat in the afternoon with just a snack. When I get hungry now I don't go down and I don't have to eat right away. I'm able to walk without any problem and I hardly crash anymore. When I crash I'm even able to function through it if I have something to do.
    It's important for me to get as much oxygen as I can. I noticed that if my nose gets plugged I will go down. It's like I'm in a crash. When it gets unplugged I almost instintly feel better. I use nasal strips at night to get as much oxygen as I can. This really helped me with my sleep. I read most people with cfs breathe with their chest. I'm one of them. I don't take in as much oxygen this way. I went on line to find the correct way to breathe.
    Pills I take - multivitamin, magnesium, potasium, fish oil, b-complex,b6, b12, d3, d-ribose and bio-strath.
    Things that make me worse, triggers my symptoms:

    Alcohol - alcohol triggers a lot of my symptoms.
    Speed - If I do things fast or quick.
    Hot shower or bath - if water is to hot I feel horrible afterwards.
    Salt - Food that has to much salt. Potato chips, french fries, etc. I had fries a couple of times from a place I was eating and both times I went down for 3 days.

    I hope something in here helps someone,

  14. This is a very interesting tape by Dr. Klinghart


  15. I've lost count of the time I've seen people comment on news stories or blog entries about ME that ME really is Lyme Disease, or some other fatigue-inducing neurological or immunological disease. ME has been Lyme Disease, AIDS, "polio by another name", Guillain-Barre syndrome (also polio by another name), and most recently Ehlers-Danlos syndrome (that was from someone who saw a picture of someone who later died of severe ME, and noticed that her joints were obviously hyperextended). Oh, and people throw autism into the mix as well.

    These are all distinct diseases, and people who know what they are doing (that is, competent medical professionals who actually know what ME is) can tell the difference.

    1. That's certainly news to me. I've been to Lyme, mold, and ME specialists and they all tell me I have whatever their specialty is. These people include Shoemaker, Klimas, Komaroff, Phillips (Lyme). In many cases, it is extremely difficult to tell the difference. People should be wary about over confident docs claiming to know it all with these illnesses because nobody really knows at this point.

    2. Belated reply - While I respect Drs. Klimas and Komaroff, I agree with the gist of the above two posts - and we find many more know-it-alls at Mr. Forsgren's report on the "Physician's" Round Table, which Dr. Mikovits got herself squeezed into the prior year, admittedly raising my eyebrows at the time.

      Forsgren's notes on this year's are reflective of his website: anything and everything. Our illnesses are whatever some clown wants them to be, caused by herpes, heavy metal, mold or cellphones, treatable with anything from antibiotics to bismuth to RIFE, curling, and brain wave machines. Welcome to alternative medicine. There's enough bogeys and cures to shut your HPA-axis down permanently, leaving just enough change for detox foot pads.

      That Shoemaker showed up to this again dismays me. That Dr. Fein, who testified before the NJ legislature on Lyme, chose to attend this circus doesn't impress me either. But by this point, I've seen seemingly straight folks, however odd their beliefs, seek stranger company still, rather than shut up, treat, and get published in journals that real doctors read.

      If you think BetterHealthGuy is a truly valuable service to Lyme or any NEID patients, tell us, which of those conference "experts" would you choose for your daughter? Tough call, because you can't sort the science from the crap, the might-helps and chance-miracle-cures from the placebos and total nonsense. Unfortunately, that sorting's a constant job for all as we sift to find what can be expected to truly help most of us.

      I am sorry to see this blog follow down such a path.

  16. http://www.youtube.com/watch?v=LRQ-NhEkLXU&feature=youtu.be
    The truth will set us free.
    What Prof. M means by prevention is stop adding more infectious antigens to the molecular mix to fold into the proteins and get rid of the vectors of disease now carrying them to your families caused by ignoring it for 38yrs. When he says keep testing it is because as they share their genes so they do in the tests we have been given.

  17. Do you have any knowledge about FL1953- protomyxzoa? I have CFS and was just diagnosed with this. I'd love to hear your take...

  18. You thought it was bad enough that ticks are creepy and disgusting little bloodsuckers. Then you heard that some of them carry canine Lyme disease. What's that all about? Here's what you need to know.

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