Clongen reports many unusual organisms seen swimming around in a drop of blood taken from many of the most ill, chronically afflicted patients. Why? I believe these patients are immunologically compromised. People of the ILADS/chronic Lyme disease community, have long claimed that Lyme disease infection (Borrelia spirochetes) is immunosupressive: this, it is argued, why co-infections, erstwhile opportunists, are able to easily grab a foothold. As one of my patients pointed out to me, there exists research showing a mechanism by which this might occur. Wooten and others have shown that Borrelia infection can lower a specific cytokine ( a mediator of normal immune function), IL 10. This weakens the ability of the immune system to fight or contain certain infections. If one microbe can do this, it is plausible that many others can do so as well, through various mechanisms. For example, XRMV, has been linked to Chronic Fatigue Syndrome. Not CFS. The proper nomenclature is CFIDS (Chronic Fatigue Immunodeficiency Syndrome) because the syndrome is believed to be associated with a yet understood, dysfunction within the immune system
The epidemic of CFS started suddenly in the mid 1980s. The Medical community at first thought it might be caused by Epstein Barr Virus, but ultimately decided the cause was unknown. The CDC was concerned about this new epidemic because they developed a case definition for the disorder, first in 1988, then revised in 1994.
Please visit the CDC website and print out their Case definition of CFS. Compare this to the ILADS published expanded definition of chronic Lyme disease. They match, nearly to a T.
Fibromyalgia arrived on the scene around the same time. For the longest time, most physicians refused to consider it a "real disease." Ultimately, The American Academy of Rheumatology published a case definition, in essence, pronouncing Fibromyalgia a genuine disease.
Fibromyalgia shares many features with chronic Lyme disease and CFS. Even the terminology sounds familiar. Instead of having Brain fog - Patients have "fibro-fog."
Let me turn the table a bit more. Pain - and I will introduce a new variable, Migraines: why does it hurt. Pain occurs when sensory fibers are stimulated, carrying a message to the brain/pain center causing the subjective feeling of pain.
Why Migraines? At first doctors thought it was a vascular disorder caused by constriction and dilation of blood vessels. Then, it was understood to be a brain disorder. Abnormal brain function can be imaged associated with migraines. Now - Botox injections can treat migraines. What is going on here?
Botox paralyzes nerves, relaxes muscles. This decompresses some nerves.
Inflamed, architecturally changed muscle tissue, impinges on nerves which too may be damaged and inflamed, perhaps exacerbated by autoimmune damage of tissues.
A lot of patients with migraines also have fibromyalgia, associated with tight muscles in the back of the neck. It is now understood that pressure applied to tiny nerve fibers, compressed by local abnormal muscles initiates the cascade. Messages are sent to the brain leading to abnormal brain function and then changes in blood vessels. The vessels constrict and then dilate, pressing on nerves. This is why migraines have a pounding quality. The vessels dilate more when the heart contracts. Fibro muscles irritate nerves but in a different way. The same can be said for Lyme patients.
Stardard medical thinking holds that painful conditions like fibro and irritable bowel syndrome are due to overly sensitive nerves. This thinking seems to have a psycho-somatic slant. These sorts of biases need to be replaced with a better understanding of the science and a respect for the suffering of the patients, rather than blaming the patient - as if in some way, the patient is responsible for the illness.
This thinking is fueled by observations that certain illnesses are more prevalent in women - the implication: women are prone to hysteria and psycho-somatic problems. In fact women have more robust immune responses than men and are twice as likely to experience autoimmune disease. This is where we need to look.
Let's go back to the first paragraph. Sick patient have germs in the blood; parasites bacteria, unknowns. The immune system is to some measure broken. These germs should be contained in a box, somewhere else, by a competent immune system.
Perhaps an initial infection: Lyme, Mycoplasm or something else, initiates the process seen in our: chronic Lyme, CFS, fibro, chronic pain syndromes, migraine, IBS, chronic pelvic pain, IC and other patients. The smart, offending germs are in some way programmed to disrupt normal immunological functions(as is known to be the case with Borrelia) causing a wide range of downstream sequelae.
Some antidepressants, Cymbalta, Elavil disrupt the neuronal messages sent to the pain center, or in some way alter the perception of pain in the brain. The same is true for anticonvulsants like Neurontin, Lyrica. They may help some. But they do not get at the root of the cause.
Sometimes - antimicrobials, of various sorts, (from doxycycline to Tindamax to Malarone) work much better for these patients.
Immune compromise, mediated by one infection ( not to discount the role of genetics, stress and other factors) can "activate" heretofore quiescent germs. This explains why patients relapsing with Lyme often experience a rip-roaring relapse of a previously controlled co-infections, like Babesia.
The process may be associated with multiple breakdowns of normal imune function. For example: cytokines become dysregulated, T cell and B cells malfunction, autoantibodies are made. Autoantibodies, the cause of autoimmune disorders, play a huge role in the disease complex.
Bottom line: sometimes it is best not to worry what it is: are bands present or not? Is it fibro or CFS. Not to say you should stop trying to figuring it out.
It comes down to this: either the illness responds to anti-microbial agent or it doesn't.
This begs the question: which antibiotics/anti-malarials or anti-parastic agents. If you don't pick the right ones you won't know if the illness is anti-microbial responsive.
That's the tricky part. That's what you pay us to figure out.
Sooo glad to see you back. I enjoy reading your blog immensely.
Always an informative blog. Probably the best information on the net. Hope he keeps writing. It always gives me some hope that someone will eventually figure this disease out. Thx!
Nice to see you back in action! Since I got my lyme diagnosis three months ago (After six years with the full stack of symptoms), I'm still waiting to find something that works. I really appreciate
this blog, I've read it all. Hope you continue writing, and perhaps in a future post can share your experience about lyme patients with severe joint symptoms (I'm one of those, I fear autoimmune disease),
and how you treat them.
Keep up the good work!
I used to work w/Cheney CFIDS blood samples on a confocal scope in a lab. You could literally see the mitochondria electron potentials either yelp or go way down, depending on which IL, cytokine, interferon, etc. was added. Although I never worked with IL-10 directly, I do strongly believe in that it is a big-time player in immune modulation and support.
Happy to read you again. With your permission I am posting a link with your new post in my Facebook page that has grown now to more than 500 Lymies. Thank you very much for coming back, your writings are very informative and very teaching and we do need you! Hope you, your family and your staff are all doing great!
Big hugs from Florida!
Do you have any thoughts on this study: http://www.msnbc.msn.com/id/42997849/ns/health-health_care/.
Should we avoid sugar or not?
I've been reading your blog for a couple of months now and I'd love to be seen by you, if you accept new patients. You've offered a great deal of information and hope you or someone can give me some reference information or if maybe you could send me an e-mail to be seen. I've been taking oral ABX for about 5 months now with mild at very best success with neuroborreliosis, possibly 10 years undiagnosed. Any help is greatly appreciated and would love to be treated by a doc with your expertise. (PocketAs101@aol.com)
Cpn infection also produces symptoms similar to those of FM and CFS. Also apparently treatable with long-term, low dose antibiotics. Perfect Health Diet is a great site written by a blogger that was treated and recovered from Cpn infection.
Hi Doc. Really glad to see you're posting again! This is a good topic, too. I've been noticing lately how similar the symptom sets are for me (chronic lymie) and CFS/Fibro patients. Though I don't know what to do with the insight, as nothing has worked for 4 years now... Coming to accept that I'll never get better...
Dear LymeMD - I have really enjoyed reading your blog and hope you continue! You have much to offer from your real-life experiences.
I'd love to hear more about how you interpret scientific studies - and how you might adapt your treatment strategies based on new information.
I believe that if we, Lyme Disease sufferers or Lymies, still respond to treatment after so many years of being so sick it is not that our immune system is "broken" but affected by the parasitic load; once we address or kill the parasites the immune system responds much better to attack the bacteria. The longer the parasitic infection, the harder it is to recover but with proper antiparasitic treatment the body would recover and would be possible to boost the immune system with therapies. It is not an inability of the immune system, my thinking, experience and research.
Glad you posted again!
I was given the dx of the start of fibro, then it was CFS, then it was intractable migranes. I was a patient of yours and my presentation of lyme and bart infection was 24/7 headpain. After the headpain hit, slowly other things did as well (brain fog, neck pain, etc) I did all sorts of in patient stays as well as loads of neuro meds...nothing worked and doctors said it was all in my head. I went the lyme route to cover all basis and in the end... I was right. I came to you already with a picc line and low dose Rocephin. After several months and aggressive treatment...you are the reason I am living again. You are the reason I do not have 24/7 headpain and can be a mom to my kids again. I'm back to my oldself and I am forever grateful to you.
Very interesting - appreciate your insights. I'm 2 years sick with Lyme/CFIDS/whatever.... Lyme treatment and metal detox help a lot. Also experimenting with various supplements to help mitochondrial function, they definitely boost my energy.
Although I'm not using the Marshall protocol, or feel confident in it, their vision of humans (well, no doubt all animals) as multi-organism ecosystems (they have a better word) that constantly struggle to maintain homeostasis - yes! I feel like the weak deer in the herd, worn down by parasites and chronic infections, my immune system in shambles. (If I go any farther with that metaphor, I get eaten by the wolves, LOL!) So clinical studies that show chronically ill people with blood swarming with stuff makes perfect sense to me.
I truly believe that one day we will see these chronic illnesses for what they probably are - multi-organism infestations that send our body systems into disarray - and stop arguing amongst ourselves. I'm intrigued by all the theories (and the near-certainty with Bb) of immune system dysregulation, of biofilms, and of these bugs communicating with each other.
Thank you for your help in this field!
Where is the most reliable and current information on Human Neuroborreliosis found?
I don't care what the CDC states, that the spirochaete cannot pass from cattle, sheep, venison, into humans (via eating rare meat). Or human to human trasmission through blood transfusion. I can see that as a possible reason for increasing neurological and immunilogical disorders that have no "root cause". But everyone seems to dismiss it out-of-hand.
I think it needs much deeper research.... because what's going on now (research-wise) isn't working.
So glad to see a post, have missed your great information and insights.
I would like to schedule an appointment with your office. I'm located in Keedysville, MD.
Good luck to anyone wanting an appointment with LymeMD. Join the queue of 6 million other Lymies. You might just slide in on your 99th birthday. For now we can gasp in awe of LymeMD's amazing insights and knowledge, and that will keep us going.
I really appreciate this blog. Have you been sick? Is that why you've left? I was wondering your view of being on IV rocephin & pulsing Alinia as a cyst buster 2 weeks on 2 weeks off. May kill babs too?
So happy to have found your blog! Just recently tested positive after being dx'd with Fibromyalgia in 2009.
Wish you practiced in Virginia.
Just found this blog. I love it! The information you share is very eye opening.
None of my doctors can agree about my diagnosis, so I am researching and reading everything I can find. I was tested for Lyme 4 months after getting sick and i was negative at.42 so no further testing was done. I have been diagnosed as having fibromyalgia and possibly lupus or RA. All my blood tests are negative. I can tell that many doctors think I'm faking it and I'm so tired of being in pain. My quality of life has diminished so much.
After reading your blog, I have decided I am definitely going to find a llmd asap! I truly think I have found my mysterious diagnosis! Than you.
I grew up in Maryland (Silver Spring). I now live in Michigan and had to find out about Lyme testing from IGENEX from the Internet. Too bad it had to get to the point I can no longer walk or use my hand before doctors even listened to me that something was seriously wrong and even then, repeat MRI's are all that was offered. Thanks for the blog. There just isn't enough information out there.
Igenex - Positive
CDC/NYS - Negative
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Last Thursday I saw LymeMD. I was in terrible pain especially during the evening and thru the night. My meds were change and it is now Saturday. I feel so happy that I was basically pain free all day. I hope and pray tonight will be pain free. I'm so happy I saw the Lyme MD
Thank you for writing. I am being treated for Lyme in the south by a Lyme "knowledgeable" ID doctor. We have an appt. With an llmd in November. How would we find you if you are taking new patients? No one here will test my toddler or husband who had a bullseye months ago. I lucked up and tested CDC positive igm western blot thru a neuro after ruling out ms (who thinks we have only seven cases a year! Need help!
This paper from Switzerland offers the idea that many cases of Alzheimer's disease may be caused by spirochete bacterial infection of the brain. About 1/4 of the cases found in medical literature analyzed were found to have Borellia burgdorferi and about 2/3 showed signs of infection by various Periodontal pathogen bacterias Treponemas.
My question is, given how difficult it is to rid the body of B.burgdorferi, how might you go about treating chronic Trepeponema infections?
Alzheimer's disease - a neurospirochetosis. Analysis of the evidence following Koch's and Hill's criteria.
J Neuroinflammation. 2011 Aug 4;8(1):90.http://www.jneuroinflammation.com/content/8/1/90/abstract
I am new to the Lyme Disease world and find your blog to be a great wealth of information. I am looking for a LLMD in the MD area. How do I find one? Thanks and keep up the blogging!
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