Lyme (neuroborreliosis) = Chronic Multisymptom Illness

[Ren]

Wasn't sure where to post the following, but since IOM currently has a (secret) contract with VA to define chronic multisymptom illness (1) and since VA already describes "CFS" as a CMI (2), I thought I'd list the following here, in the ME/CFS IOM forum.

Lyme (neuroborreliosis) came up in another thread today, and this reminded me of a recent Swedish State healthcare document which "updated" (i.e. maintained) Sweden's controversial Lyme (neuroborreliosis) diagnostic-and-treatment policies (3).

In this document, State researchers state that symptoms which remain after two-weeks antibiotic treatment (PLDS - post Lyme disease syndrome) may be related to psychiatric problems; Of course, the ME/CFS community is familiar with such claims.

The 2009 study cited to support this view is "Psychiatric comorbidity and other psychological factors in patients with 'chronic Lyme disease'" (4). I don't have access to this document, but the abstract includes the following, (emphasis added):

"There is no evidence of current or previous Borrelia burgdorferi infection in most patients evaluated at university-based Lyme disease referral centers. Instead, psychological factors likely exacerbate the persistent diffuse symptoms or "Chronic Multisymptom Illness" (CMI) incorrectly ascribed to an ongoing chronic infection with B. burgdorferi. The objective of this study was to assess the medical and psychiatric status of such patients and compare these findings to those from patients without CMI... CMI patients had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain (P <.001) than did the comparison group."

Perhaps others have already seen Lyme / chronic Lyme described (in writing) as a CMI?


Also of cause for concern is a statement from Columbia University's Lyme and Tick-Born Disease Research Center which advises graded-exercise therapy as treatment (5). Since Lyme (neuroborreliosis) -once treated - is a post-infection state (ME = PVFS = PIFS), it concerns me that PENE isn't named as a possible concern for some patients.

Re "treatment" for damage/ongoing symptoms and from Columbia (5):

"Ongoing attention to the problem of "deconditioning" needs to be addressed. Because patients with chronic Lyme Disease often experience dramatic fatigue (much akin to patients with Chronic Fatigue Syndrome), they spend much time in bed and so their muscles lose tone over time. This can lead to an ever worsening syndrome in which patients get tired after exercise and so avoid it. Further deconditioning results such that even less exercise the next time leads to considerable post-exertional fatigue. To counter this cycle, a very gradual but progressive exercise regimen needs to become a daily part of the patient's routine for a maximal return to health." (Emphasis added.)

On this page - (6) - however, there is brief mention of "exercise intolerance" in the work of Dr Satish Raj (Vaderbilt U), as mentioned in a 2010 conference.

(1) http://www8.nationalacademies.org/cp/projectview.aspx?key=49546
(2) http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp
(3) http://www.folkhalsomyndigheten.se/...agnostik-av-borreliainfektion-2013-101-28.pdf
(4) http://www.ncbi.nlm.nih.gov/pubmed/19699380
(5) http://www.columbia-lyme.org/patients/ld_treatment.html
(6) http://www.columbia-lyme.org/research/scientific.html

 

[Martial]

I could be easily placed in the chronic lyme category as of now, it is what I got sick from as well... The medical ignorance is so damn frustrating though.. They did have something right about the deconditioning, however you cannot cure lyme in two weeks, even if you catch it in stage one... For people that have had the infection for a longer period it already spreads to the cns, brain, and just about anywhere else it wants to go.. Most Antibiotics do not kill all co infections of lyme either so you get people that are so called "cured" and then later develop things like alzheimer's, M.S., CFS, FMS, Parkinsons, A.L.S., Psychosis, Bi Polar, Arthritis, and a multitude of other misdiagnoses until they find a re surfaced active infection again, this time warranting long term treatment for recovery and skeptics saying its all in their head.. The level of complete insanity by the government is ridiculous just because it is hard to marker the source of infection, because of an "invisible" Illness, could you imagine people with cancer actively seeking treatment and getting sicker day by day, then having their medical care providers say they are making it up and prescribe them prozac?! People die from lyme disease all the time, its not something to just brush away as neurosis.

 

[Ren]

Something else I've wondered about for sometime in regard to the "deconditioning" theory is that when it's written about, the doctors advocating this theory do not seem to distinguish between individual patients. Someone else on the forums is likely to know much more than me, but I'm thinking of the concept of "muscle memory"*, referring to how quickly our muscles can regain strength, if they've been strong/toned before.

*http://en.wikipedia.org/wiki/Muscle_memory (And I just did a search - and muscle memory doesn't seem to have been discussed elsewhere on PR.)

Have researchers evaluated how athletic/active someone was before being striken (for those who had an obvious infectious onset - and as opposed to a gradual decline)? Many of us were physically active before developing this disease. And many of us - when well - have trained for periods as well, and therefore have an awareness of what it feels like to be less conditioned and then to take your body to higher level of fitness for a particular activity - like a big hike or running event, etc. The "fatigue" with this disease - for my body at least - is not like that.

(It seems important though that researchers at some point would have documented pre-disease fitness, followed by severity of infection, followed by severity of ME. I know the last two in that series have been done, but what about the first?)

Additionally, muscle tone does not address being "fatigued" by sound, conversation, reading, speaking, etc. mental activities. A fever drew a very clear line in the sand for me, regarding such activities. But, I have a feeling the theory of deconditioning has been well-discussed on PR already - not my intention to reinvent the wheel.

P.S. @Martial - your buddy (in your avatar) looks happy. Reminds me of a boxer-bully-? (mixed breed) I used to have, and I have a picture of him sleeping kind of on my head as well. Maybe it's something about dogs of that flavor (if I'm guessing correctly at the photo) that they enoy such antics.

 

[Daffodil]

CFS looks like it might actually be lyme disease...this is from 2 top sources

 

[Martial]

I used to be a fitness athlete and martial art instructor before coming down with lyme, of course those are just activities I did but I was in the 1% of population optimal fitness health in that regard, it makes muscle memory very easy for putting size on again, though paradoxically it feels you get hit way harder with cardiac de conditioning for whatever reason..

This was while being asymptomatic with lyme before abx treatment brought out severe herxing and declining health.



I can't train right now but hopefully can start up again soon, definitely de conditioning is more in issue with say POTS/OI which combined with being knackered with illness can really wear you down. It is not the same fatigue as say a flu though of course! There is difference in the level of de conditioning from not exercising, and being bed ridden though..

I don't think CFS is Lyme, I just know that the vast majority of cases in chronic late stage lyme can be misdiagnosed as CFS.. Though I am sure a large component of all this illnesses share some key issues of deficiencies, toxicities, methylation issues, enviromental toxins etc..

@Ren I know right! She is a boxer, so adorable! haha that is too funny that you have such a similar photo! Puppies always keep us on our feet lol!

 

[5150]

I could be easily placed in the chronic lyme category as of now, it is what I got sick from as well... The medical ignorance is so damn frustrating though.. They did have something right about the deconditioning, however you cannot cure lyme in two weeks, even if you catch it in stage one... For people that have had the infection for a longer period it already spreads to the cns, brain, and just about anywhere else it wants to go.. Most Antibiotics do not kill all co infections of lyme either so you get people that are so called "cured" and then later develop things like alzheimer's, M.S., CFS, FMS, Parkinsons, A.L.S., Psychosis, Bi Polar, Arthritis, and a multitude of other misdiagnoses until they find a re surfaced active infection again, this time warranting long term treatment for recovery and skeptics saying its all in their head.. The level of complete insanity by the government is ridiculous just because it is hard to marker the source of infection, because of an "invisible" Illness, could you imagine people with cancer actively seeking treatment and getting sicker day by day, then having their medical care providers say they are making it up and prescribe them prozac?! People die from lyme disease all the time, its not something to just brush away as neurosis.

I don't know about if "it's Lyme" or not, but I do know that my version of "it" is extremely contagious. So if all the scientists who say it's Lyme, will also agree that "it's Lyme, and it's contagious", then I will be listening. I have no expectation of help coming from NIH or CDC, for as you say, "the level of complete insanity" by our US Govt's stonewalling position is proving tough to fight against. They have the money, so agreed, we need a way around that : the failure of our Government's health-watchers is so apparent, as to be at the level of The King Has No Clothes! They know. They Ignore. They hope no one notices.

However, it's safe to say that We Have Noticed the ineptitude and we are finished with ignoring it. So let's fund this one million Dollars. Once we have treatments and can feel better, we will then finish the fight. Until then, let's go!

 

[Ren]

Edit to post #1: Source #4 is open access: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2751626/