Lyme Disease: CDC FAQs

[Eeyore]

Oh - and your positivity on the blot means you are making antibodies to bb. Since you are positive on both tests, it is very likely you were exposed to Lyme, and may or may not still have it. Your problem, however, isn't inability to make any antibodies against it. However, studies seem to indicate that DR11 carriers make better, more effective antibodies than DR4 carriers, and as a result clear it faster, before it triggers long term symptoms. It does seem to affect whether the course of symptoms is chronic or acute.

There is certainly more work to be done in this area, and I agree with you that there are not enough resources dedicated to helping people who have these types of conditions, be it chronic lyme, post lyme, fibro, ME, etc. I wonder how chronic lyme people would respond to rituximab... I suppose they wouldn't try it (I certainly would not if I believed I had a chronic infection!) I don't know if it would be safe. However, if it helped or hurt would be interesting to know, as it would tell us a lot about whether or not there is active bb and whether or not it's causing the symptoms.

 

[Eeyore]

@Antares in NYC @duncan

Ok - so which of these tests do you guys think is good / not good?

I just looked at FDA approved lyme tests. I found 85.

http://www.accessdata.fda.gov/scrip...o=09/30/2015&sort=approvaldatedesc&pagenum=10

I have no idea which to look at or which are believed to give false positives or negatives.

 

[Valentijn]

Ok - say we assume you are unlikely to get a positive culture. You still haven't answered the question of how to prove you have it, and why a blot doesn't just show past exposure.

I'm suggesting that a positive culture proves infection, not that lack of positive culture disproves it.

Culturing is almost never done, even in research. And on the rare occasion that it is done, it's with pathetically small sample sizes. You won't get a positive or negative culture because you won't get a culture at all.

The needed research is not being done, possibly because it's not being funded - sound familiar? The one and only thing we know about all Lyme testing, mainstream and alternative, is that not a single one of them are truly sufficient. This is why even mainstream researchers will often stress that the diagnosis should be based clinical presentation, history, and additional lab work which can help support or rule out Lyme.

The tests available to doctors and the public are deeply flawed. All of them. It's pointless (and highly aggravating) to be arguing about the problems with alternative testing when there's no useful mainstream testing available.

No one in the chronic lyme group is showing any real evidence of active infection. The clinical syndrome looks so much like ME that an autoimmune mechanism seems far more likely to me.

It's certainly been shown to spread all over the body in people who are not treated during the acute stage shortly after exposure. I was exposed at age 12-14 and did not start to take any antibiotics at all until I was 25, and that was for sinus infections and similar. I did not take antibiotics focused on Lyme until I was 35.

And I doubt my case is particularly uncommon. We were dirt poor, in the rural south, and there was pretty much no awareness of Lyme or other tick-borne pathogens at the time. I didn't have any particularly acute illness, but I started getting odd pains, skin problems, joint pains, sensitivity to heat, failure to sweat, a weird rash (annular lesions), and probably other things I've forgotten about. I didn't see a doctor for anything except the rash (got a skin cream that did nothing), because we couldn't afford to, and because there was a general mentality that nothing could be seriously wrong with someone my age and any problem was just due to me being a bit wussy or prissy.

So while there may be issues with people still showing signs of infection post-treatment, I'd also bet there are a lot of people like me who were exposed but went decades without any treatment at all. And did you know that the official dose of antibiotics thought to be sufficient to kill off Lyme in acute cases used to be shorter? Now they know that it wasn't sufficient, so that was quite a big oopsie there

What I don't understand is why people are so ardently opposed to the idea of chronic or post-treatment Lyme. We know almost nothing about Lyme, yet many people act like it's all been figured out. I think there's an excess of hypothesizing on both sides and treating it like fact, but it's just absurd to think that we can conclusively say that Lyme does not persist, that ongoing symptoms cannot be due to infection, that any particular tests are accurate for Borrelia in general, etc.

Because you don't know any of that. No one does. And I think it's inappropriate to draw such firm and damning conclusions while there are still so many huge gaps in the research.

 

[Valentijn]

If there are docs out there who see the problem, and have read the research on which abx work, why aren't they out there curing people in droves and ending the scourge of chronic lyme?

Actually they do seem to be curing or significantly helping a lot of people. Celebrities and athletes are "coming out" with Lyme more and more, and many are becoming pretty healthy again.

When I mentioned my diagnosis on Facebook, a not-close friend I'd known for several years mentioned that she had had it too, and that a longer course of antibiotics had restored her to health. Though she never had ME/CFS of course, so probably a better prognosis. She is also an intelligent, educated, and well-grounded woman - not a flake who would be imagining an illness or a cure, or buying into quackery.

If you aren't hearing about these sorts of success stories, you really have not been looking at all.

 

[Valentijn]

IgeneX may have produced some false positives, but I remember reading way less in comparison to the outrageous false negatives of our current official testing.

This comes up a lot, so I'll clarify. The paper which showed a huge rate of false positives from Igenex was from a urine test 20 years ago. They do not still use the same urine test (no one does), so it seems quite irrelevant to any tests which actually exist in the present.

The same paper showed a 33.3% false negative rate from mainstream labs, and that was only from the Western Blot. If they'd run the ELISA first, the false negative rate would have been higher.

 

[Valentijn]

My point on the testing is that I don't know how to interpret the 50% false negatives. That implies we have a test that is accurate to compare it to.

It's done a few ways. One is that the requirements regarding lab results are different if there has been a documented erythema migrans rash. So people who were bitten by a tick and had that rash are considered to have been unquestionably infected.

Another way is with exposure + Bell's facial palsy. I don't think this is in the official guidelines, but it's a known consequence of Lyme, and has been considered proof of infection in areas where Lyme is endemic.

Another way is with previous mainstream testing. If someone tested unequivocally positive, then that is considered proof of infection.

When the above samples are run through mainstream testing (at a later date for those who were already tested positive), a lot of them test negative. That happens even after the initial period where recently infected people are expected to test negative.

 

[Valentijn]

What does it actually cost for a course of the abx you think would cure you?

In the Netherlands, where drug and health care costs are strictly controlled, the administration of IV antibiotics cost me 100 euros per hour, not including the costs of the drugs and equipment. My first antibiotic was 4 days per week, and the 2nd was 3 days per week. Each lasted 6 weeks. Each infusion was billed as one hour minimum, and I learned unhook everything and remove the cannula myself before the 3+ hour infusions started, which kept costs down.

So 2,400 euros for the first course and 1,800 for the second course. And probably a maximum of 1,000 euros for the drugs, saline packs, IV lines, cannula, and everything else. So around 5,200 euros or approximately $6,000. Though actual costs would likely be much higher in the US. I wouldn't be surprised if it was $10,000 or more.

And to make it perfectly clear, my reaction to these antibiotics indicate that 1) I almost certainly had Lyme 20 years after exposure, and 2) the full 6 weeks of each was necessary. When Lyme or other spirochetes are killed, they release endotoxins which trigger a specific reaction known as the Jarish-Herxheimer reaction. I had the typical hypotension, which was distinct from my usual OI and followed daily and weekly patterns, as well as the frequent fevers which I had not had before.

In each case, the Jarisch-Herxheimer reaction ceased at the end of the 5th week or the beginning of the 6th week of antibiotics. If I had stopped each at 4 weeks, I would have still had the fever and hypotension following the last dose, indicating that there still spirochetes being killed off, and therefore still existing in the form targeted by each antibiotic. So I think that whoever came up with that specific duration of the IV antibiotics really knew that they were doing, and I'm extremely glad my doctor listened to them.

 

[Valentijn]

I wonder how chronic lyme people would respond to rituximab... I suppose they wouldn't try it (I certainly would not if I believed I had a chronic infection!) I don't know if it would be safe.

Yes, I think it's important to check for infections before starting on any therapy which is effectively immuno-supressant. Especially since ME patients seem susceptible to certain infections after onset. In my case I would not try anything immuno-supressant while my doctor or I thought that I might still have an active Lyme infection.

But since I'm finally off antibiotics now that I've stopped exhibiting a Lyme-indicative reaction to them, and have not made more progress with the last course, I'm hoping that I can proceed to something which can target lingering problems and perhaps even the ME pathology.

At any rate, there have been a large number of non-responders to Rituximab, so it would be interesting to see if there is an ongoing infection which is rendering that treatment ineffective due to continuing to trigger ME pathology.

 

[Eeyore]

This comes up a lot, so I'll clarify. The paper which showed a huge rate of false positives from Igenex was from a urine test 20 years ago. They do not still use the same urine test (no one does), so it seems quite irrelevant to any tests which actually exist in the present.

The same paper showed a 33.3% false negative rate from mainstream labs, and that was only from the Western Blot. If they'd run the ELISA first, the false positive rate would have been higher.

That's helpful - so how discordant are results from the Igenix test and mainstream testing now?

It's done a few ways. One is that the requirements regarding lab results are different if there has been a documented erythema migrans rash. So people who were bitten by a tick and had that rash are considered to have been unquestionably infected.

Another way is with exposure + Bell's facial palsy. I don't think this is in the official guidelines, but it's a known consequence of Lyme, and has been considered proof of infection in areas where Lyme is endemic.

I would think the bullseye rash is a pretty solid indicator of exposure. I'm not so sure about the Bell's Palsy, although it might be part of a clinical picture of lyme. My grandmother had it in her 80's when bedbound in a nursing home (she had been unable to walk for years due to Parkinson's) - there are probably multiple causes of Bell's Palsy, but in any case we don't really know.

If we can more or less prove clinical infection, that would help to establish how accurate a test is. We just need something to compare it to. Even if a test is picking up all the cases with a rash, it doesn't tell us how many cases it's missing though - or how many cases it's picking up, without a rash, that are not really positive. Certainly clinical syndrome and good physical exam and history are critical here, and that's a dying art in the US. Docs are in such a rush here now because of the pressure from insurance companies.

Another way is with previous mainstream testing. If someone tested unequivocally positive, then that is considered proof of infection.

What I gathered last night from reading the FDA testing is that there needs to be significant concordance with the FDA tests. This of course assumes the FDA tests are accurate... this does seem to be a minefield of tests of questionable accuracy. i.e. unvalidated tests are used as standards for new tests!

When the above samples are run through mainstream testing (at a later date for those who were already tested positive), a lot of them test negative. That happens even after the initial period where recently infected people are expected to test negative.

Ok, but in this case, are they testing negative because they've cleared the infection? It would seem to me that test validation should require simultaneous testing (same blood draw) to be of much use.

@Valentijn - If you don't mind my asking, where are you from? When you say rural south, is that the rural south of the Netherlands? Has Lyme Disease been endemic there for long?

When I first got sick, since I live in an area with very high levels of endemic Lyme, my PCP tested me like 20x for Lyme using every test he had. He's a very mainstream PCP, very smart, and very good diagnostically. In fact I was tested by his order the night I got sick and went to the ER. He had called in some special testing requests to the hospital for me! I've had Lyme tests many times since, and never a hint of positivity - which doesn't mean you guys aren't positive, only that not all patients with ME are (which probably everyone agrees). I then went to an ID doc. He did, among other things, a spinal tap. Tests for Bb in spinal fluid (abs and PCR). Negative. He then put me on high dose doxy for months, claiming the normal dosage wasn't sufficient to penetrate the CNS based on some preliminary studies he had read. Got really sick to my stomach, but gained no benefit. Ultimately was on it for several months initially, at 400mg, taken in the morning/evening. Never had a rash or any other symptoms that seemed lyme, and had no joint issues at all back then. I've never developed a Lyme-like arthritis.

I have no question Lyme can persist, especially in cases like yours where you were not treated. One would think that it would frequently persist in people who are untreated, although HLA genes do seem to predict this in part.

I still think in the end that it's a trigger - even if ongoing in some cases - for ME. I can't imagine why else there is so much symptom overlap. It just looks SO similar. People who are testing positive should be treated - and we should make sure we are using the right antibiotics. I have no doubt we can clear Lyme with existing antibiotics, but Antares made an excellent point that financial constraints may prevent this. That has not been true for me - so sometimes I fail to understand how much financial constraints do affect others, and this is a shortcoming on my part that I will watch out for. I am used to battling the unknown.

I still think there is something going on like a GBS or even a streptococcal rheumatic fever, which involve autoantibody production (possibly through mimicry and possibly mediated by HLA's). I wonder if Lyme specialists could divide populations into groups whose symptoms look more autoimmune, and groups whose symptoms look more chronic infectious. Is there any clear way to divide into subgroups?

Regarding cultures, I don't expect that they are often done, nor do I expect that they would always be positive when a patient has an infection - my point was only to establish a group of people we KNOW have it, so that we can use that to compare to healthy controls to validate tests. I'm trying to scientifically start with what we do know. I don't know another way to prove current infection with bb. Antibody tests don't do that, and can't do that.

People on these boards really overuse the whole herxheimer thing - it's terribly misinterpreted to mean any bad reaction to any drug or pathogen, when in the vast majority of cases it simply doesn't happen either with the pathogen they are describing or the drug they are using - BUT Lyme is one case where we know it DOES happen. So it might actually be quite useful in monitoring response to abx. I wonder how universal it is in Lyme patients, and if it occurs with all drugs (I'd expect it to be stronger with a cephalosporin than a tetracycline, based on mechanism - but that's just extrapolation of what I know of how the drugs work and how the J-H reaction works).

Sometimes I'm not making claims nearly as strong as they sound - as pointed out in an earlier post on this thread, I like to use the Socratic method to with others to challenge myself and to challenge them so that holes in arguments are pointed out, and thus, repaired, and bad theories are thrown out if we can disprove them. That's how I think. I like when others challenge me. Dr. Edwards calls me out all the time when I make a bad logic leap or an arugment doesn't work for this or that reason, and it's something I appreciate, so long as the arguments are made scientifically. I do not understand all the ins and outs of Lyme pathology. I do believe patients who say they are sick are sick!!! This should go without saying. I also believe they aren't getting adequate treatment much of the time if they are on these boards, either because docs don't or because docs can't.

I am generally of the view that much of ME and Lyme and other illnesses can be figured out in our brains, w/o that much need for testing beyond what we have already. We can formulate a theory, then eventually test to confirm or disprove. I feel like we do too many studies w/o much thinking involved. This is a trend in modern medicine - lots of tests available, so we shotgun it, and try everything. Better to focus on a hypothetical mechanism first, then a prediction from that mechanism - and we shouldn't be hesitant to jettison theories that don't hold up. After all, we want the truth - not just "an answer" but "the right answer."

@Valentijn - Do you consider yourself cured of Lyme, but that it triggered ME, and now you have that? If so, do you view Lyme as a post-infectious syndrome of some sort (possibly running concurrent with the infection in some cases, but not caused directly by it)? Can you separate any symptoms into the Lyme and ME categories? (Obviously it's an n=1 study - but it's a start. I've learned a great deal by trying solve my own illness rather than trying to solve everyone's - because I can get tests to confirm or refute theories on myself, I can't do that w/ other patients for obvious reasons!)

Do you still test positive for Lyme, and is it on the same test, and which one?

Do you have a lot of joint/arthritic symptoms? Do you have neuropathy (sensory, motor autonomic)?

What are the most prominent objective abnormalities you can document by imaging or bloodwork?

It has been noted by many ME docs that most patients (me included) have very low sed rates (0 usually, I've gotten as high as 2 on a few occasions!) I know you have a higher sed rate. I wonder if this separates Lyme triggered from non Lyme triggered at all? I am pretty confident I never had Lyme.

 

[Valentijn]

That's helpful - so how discordant are results from the Igenix test and mainstream testing now?

I don't think anyone knows. No one is really checking, and certainly not in a rigorous manner.

I'm not so sure about the Bell's Palsy, although it might be part of a clinical picture of lyme.

I've only seen it used as an indication in endemic areas with established outbreaks. Like a study revisiting the patients from Lyme, Connecticut 30 years after.

Ok, but in this case, are they testing negative because they've cleared the infection? It would seem to me that test validation should require simultaneous testing (same blood draw) to be of much use.

No, I think they were samples taken prior to treatment.

@Valentijn - If you don't mind my asking, where are you from? When you say rural south, is that the rural south of the Netherlands? Has Lyme Disease been endemic there for long?

Southern US. Southeastern Oklahoma to be more precise, just a little north of the Texas border. We had cattle on our property, and a lot of deer and other animals passing through. There was a creek and a 20 acre lake which probably made it a popular place to visit. All of the ticks I saw were deer ticks, and I was bitten dozens of times over two years, maybe hundreds of times. I walked through a nest once, right in front of our trailer entrance, and had over a hundred of the little buggers climbing up my legs. Fortunately we were quickly able to bleach them (and my legs) before they got to any crevices.

I wonder if Lyme specialists could divide populations into groups whose symptoms look more autoimmune, and groups whose symptoms look more chronic infectious. Is there any clear way to divide into subgroups?

The study I was looking at a couple days ago divided them in a similar way. Bell's Palsy (neurological) versus Lyme Arthritis versus rash, or something to that effect. The non-rash one were the least likely to have been treated during acute infection, and 14 out of the 16 participants in that initially untreated group still had the most serious chronic problems. Whereas those treated in the acute phase almost all recovered fully.

Regarding cultures, I don't expect that they are often done, nor do I expect that they would always be positive when a patient has an infection - my point was only to establish a group of people we KNOW have it, so that we can use that to compare to healthy controls to validate tests.

It's not just that they aren't often done. It's that they are very literally almost never done. Even in CDC research, cultured samples are almost never used to assess testing methods, and when they are used it's something like two dozen samples out of the hundreds in the study. And assessments are never made using solely the cultured subgroup, so you can't even figure out how accurate the tests are just for the cultured samples.

People on these boards really overuse the whole herxheimer thing - it's terribly misinterpreted to mean any bad reaction to any drug or pathogen, when in the vast majority of cases it simply doesn't happen either with the pathogen they are describing or the drug they are using - BUT Lyme is one case where we know it DOES happen. So it might actually be quite useful in monitoring response to abx. I wonder how universal it is in Lyme patients, and if it occurs with all drugs (I'd expect it to be stronger with a cephalosporin than a tetracycline, based on mechanism - but that's just extrapolation of what I know of how the drugs work and how the J-H reaction works).

Yes, the "I'm herxing on Vitamin C", or "I feel tired because detoxing is making me herx" and whatnot are a little annoying. A proper Jarisch-Herxheimer reaction will be triggered by any method which kills off the spirochetes. Antibiotic treatment is not required, though I'm not familiar with what else might kill Lyme.

@Valentijn - Do you consider yourself cured of Lyme, but that it triggered ME, and now you have that? If so, do you view Lyme as a post-infectious syndrome of some sort (possibly running concurrent with the infection in some cases, but not caused directly by it)? Can you separate any symptoms into the Lyme and ME categories?

I view it as being as eradicated as it can be at this point. It's possible something is lurking somewhere that antibiotics can't reach and is ready to pounce if given the opportunity. But at this point, I think it's very unlikely that an active Lyme infection is causing any of my symptoms. Additionally, I almost certainly had a Bartonella infection, just in case things weren't complicated enough

PEM and OI remain at this point, so I'd assume those are from ME and not Lyme. Most cognitive dysfunction outside of a PEM episode has disappeared. My brain no longer hurts when I think too much or listen to too much Dutch, and I haven't had a cognitively triggered crash in quite a while. However I am still typoing far more than I did pre-ME, and still have problems finding words at times. So I think some cognitive symptoms might have been Lyme, and some others are ME ... and there might be some overlap there as well. Chronic deeper (vascular?) pain seems gone as well, but maybe that's more of a Bartonella thing.

My joints are still pretty screwy. They like to ache until I crack them, and will have periods where there is extra inflammation near them, especially my knees and wrists. But I don't know if that's a chronic post-Lyme thing or an ME thing. The same joint symptoms, on a smaller and milder scale, started long before ME symptoms. Joint problems also increased about a year prior to the onset of ME - one knee would give me a lot of crap when walking on stairs, and my left tempomandibular joint started aching and needing popping all the time.

Do you still test positive for Lyme, and is it on the same test, and which one?

It hasn't been tested again yet, after diagnosis. The Elispot-LTT is supposedly good at determining changes in the status of the infection, but maybe it's still a little soon after finishing antibiotics to test.

Do you have a lot of joint/arthritic symptoms? Do you have neuropathy (sensory, motor autonomic)?

Yes, regarding the joints, as discussed above. They started when I was 15 or sooner. By that point I had discovered several ways to crack my back to relieve the discomfort. But it really wasn't bad enough for to think that there was anything wrong with me. Then things got worse around age 30-31. One knee mostly, and the jaw. After ME hit, the other knee, my wrists, and both hips joined in. At some point all of the joints on the right side of my body decided to act up at the same time. My right jaw calmed down eventually (a big relief because it's much harder to crack than the left jaw), but my right ankle has remained problematic while my left ankle is fine. The hips also aren't too bad generally, though they do feel better if I crack them a few times per day.

Regarding neuropathy, my feet went a bit numb starting in 2005 at age 27. But it happened while wearing really uncomfortable safety shoes for work, so that might have been a factor. I also completely stopped being ticklish at that point.

I had problems with sweating when I was 13 - I got heat exhaustion while fertilizing corn in the summer. None of the other kids had any problems, but they were sweating and had the fertilizer clumped all over their hands while I just had a dry dusting of it on mine.

I also noticed that I wasn't sweating and the heat was kicking my butt when I was trying to do Tae Kwon Do at age 27. The entire right side of my body went numb at age 28, and was resolved three weeks later when a neurologist prescribe folic acid. The folic acid triggered an intense bout of vertigo lasting 5 minutes (I had to lie down while the room spun wildly), then the numbness was gone when it the vertigo ended. Bartonella marks first emerged immediately before the right-sided numbness.

I got a lot of muscle twitches and cramps after coming down with ME, usually due to over-using the muscles involved. Magnesium helped quite a lot. Though this is something that seems to have improved or disappeared during Lyme treatment.

I frequently get ataxia, but only since ME onset. I get periods of vertigo, but they're rare and clustered - one period of vertigo every year or two. The vertigo seems to only happen along with some viral symptoms.

Oh yeah, speaking of periods, those have been very irregular since I was 16. Usually on a 6 week cycle, and missing months at a time. This seems to have completely resolved since starting on B vitamins after developing ME.

What are the most prominent objective abnormalities you can document by imaging or bloodwork?

My ESR is almost always elevated, just a little above the reference range. CRP was elevated the one time it was tested. IL-8 is extremely elevated, as well as PGE2 and MCP1. Nearly every urine sample since I came down with ME has had traces of blood in it, even though I wasn't on my period at the time. My pulse pressure (when untreated) goes under 25 on a daily basis. Blood norepinephrine levels have repeatedly tested low. And a single-day CPET says I'm really buggered I also have visible non-pitting soft tissue swelling, over most (all?) of my body, especially noticeable when I've certain foods which I'm not allergic to.

It has been noted by many ME docs that most patients (me included) have very low sed rates (0 usually, I've gotten as high as 2 on a few occasions!) I know you have a higher sed rate. I wonder if this separates Lyme triggered from non Lyme triggered at all? I am pretty confident I never had Lyme.

I'm not sure. I don't think I've heard of ESR being elevated in Lyme patients, but I've never really looked into it. It sounds like it's usually normal?

 

[duncan]

@barbc56 , the three distinct studies are each dealing with persisters and antibiotics - and a technique, pulsing - which may work on them. One team was led by Kim Lewis from Northeastern University, I think. One was Ying Zhang,along with Auwaerter of IDSA fame, from Johns Hopkins. The last, and I believe most recent, was led by Monica Embers out of Tulane.

They were all published with the last 18 months or so, I believe.

@Eeyore , the tests I like are the Western Blot without the Dearborn, MI criteria, and the C6. I catch a lot of flack for my interest in the C6.

I hope to try the Elispot some day.

I don't like any tests that explore Bb presence or signs in CSF exams outside of early disseminated stage.

 

[Eeyore]

@Valentijn -

Complicated and interesting story. I thought you were Dutch - didn't know you were an expat American living in the Netherlands.

A lot of symptoms you describe are like my own, in particular the neurological. I've had numbness, twitching, OI (POTS), general clumsiness, sweating abnormalities in a stocking/glove pattern (do your feet burn at night?), lousy performance on single day CPET (low AT, 50-60% of predicted VO2 Max), labile bp (although my pulse pressure tends to run about 50, but that might be due to treatment), muscle pains when I use muscles at all and also following a period of twitching (which is always clustered to me - like every day for a few months and then gone), etc.

Did you have any kind of acute onset to your ME, like an obvious infection, or are you more in the insidious onset category?

I've never had elevated CRP or ESR. ESR always very low, CRP normal.

I seem to have fewer arthritic complaints than you, although my joints crack a lot.

For me, the most disabling is the neurological - especially the autonomic. It think what happens is just that my body can't react to normal stresses (like heat, or exercise, or whatever) by the normal autonomic mechanisms, so it takes so much more effort for me and there is so much more discomfort.

You also describe the same mental symptoms I experience. I have word finding difficulty a lot. I lose my train of thought mid sentence and completely blank. It drives me nuts as this was not how I was before - I had a really good working memory and could even do large, complex calculations as a kid w/o pen and paper. I worked retail in high school as a part time job for mad money, and I used to calculate the total in my head (with tax) before hitting the total button on the register (in under a second generally). Now I can't come close to doing that as I can't keep all the numbers in my head at once. I pause a lot when I speak - like I can't finish sentences.

The other weird error is that I'm much more likely to substitute words (when typing) for other words that sound alike or identical to them. This is something i NEVER did when younger. I think it relates to problems with working memory though. Sometimes I just throw a random word in that is totally wrong / out of context. Not sure where that comes from.

So it does seem as if many of your symptoms fit the ME paradigm, at least compared to me, with the arthritic symptoms being perhaps more Lyme related - possibly also the ESR, not sure on that. You have a lot that really looks like ME, but elevated ESR is not common in ME, suggesting (to me) the possibility of concurrent illness.

 

[Valentijn]

(do your feet burn at night?)

Nope. Though I do get very hot and very cold at the drop of a hat.

Did you have any kind of acute onset to your ME, like an obvious infection, or are you more in the insidious onset category?

Chronic onset in January 2011 was acute, after an infection that seemed viral. But I also had a few episodes in 2003-2005 where I seemed to be getting sick frequently while doing exercise classes (martial arts and aerobics). In retrospect it might have been a mild PEM. But it came and went, and there were also times when I could retake the same classes without any problems.

The other weird error is that I'm much more likely to substitute words (when typing) for other words that sound alike or identical to them.

That's what I do too. But I'm a very fast typist, so I basically type words instead of letters. Hence when I typo, it's also a full word, not individual letters. I do typo more with ME now, but I think I was making the same type of typos prior to illness.

 

[Eeyore]

That's what I do to.

That's ironic! =P (to vs too) That's the same kind of error I make with ME brain fog.

 

[Vic]

My joints are still pretty screwy. They like to ache until I crack them, and will have periods where there is extra inflammation near them, especially my knees and wrists. But I don't know if that's a chronic post-Lyme thing or an ME thing. The same joint symptoms, on a smaller and milder scale, started long before ME symptoms. Joint problems also increased about a year prior to the onset of ME - one knee would give me a lot of crap when walking on stairs, and my left tempomandibular joint started aching and needing popping all the time.

Yes, regarding the joints, as discussed above. They started when I was 15 or sooner. By that point I had discovered several ways to crack my back to relieve the discomfort. But it really wasn't bad enough for to think that there was anything wrong with me. Then things got worse around age 30-31. One knee mostly, and the jaw. After ME hit, the other knee, my wrists, and both hips joined in. At some point all of the joints on the right side of my body decided to act up at the same time. My right jaw calmed down eventually (a big relief because it's much harder to crack than the left jaw), but my right ankle has remained problematic while my left ankle is fine. The hips also aren't too bad generally, though they do feel better if I crack them a few times per day.

Bingo. I'm curious, Valentijn. Why do you discard a root musculoskeletal cause of CFS/ME when you clearly have musculoskeletal issues?

 

[Valentijn]

Bingo. I'm curious, Valentijn. Why do you discard a root musculoskeletal cause of CFS/ME when you clearly have musculoskeletal issues?

Because I also have a lot of neurological and immune issues.

 

[Antares in NYC]

Because I also have a lot of neurological and immune issues.

Same here... When I first got Lyme -bullseye rash and all- I had tremendous muscular and joint pain, lack of feeling and partial loss of control in the left side of my face, in addition to neurological and cognitive issues.

This second time around the muscular and joint pain are not quite as bad, no motor loss in my face, but the neuro-cognitive problems are worse than they've ever been, alongside new major GI track issues, my body no longer absorbing dozens of key nutrients for no clear reason. Losing short and long term memory at an increasing pace.

 

[Vic]

Because I also have a lot of neurological and immune issues.

Same here... When I first got Lyme -bullseye rash and all- I had tremendous muscular and joint pain, lack of feeling and partial loss of control in the left side of my face, in addition to neurological and cognitive issues.

This second time around the muscular and joint pain are not quite as bad, no motor loss in my face, but the neuro-cognitive problems are worse than they've ever been, alongside new major GI track issues, my body no longer absorbing dozens of key nutrients for no clear reason. Losing short and long term memory at an increasing pace.

What if those neurological and immune issues have a root cause within your musculoskeleton? Why favor immunology or neurology as the probable source? After all, you can feel and see the musculoskeletal problems telling you there's something wrong with them. What if the CDC and "mainstream" doctors are right in saying the way Lyme leads to these symptoms is lasting tissue damage rather than a lasting infection?

 

[duncan]

Oh, there's probably lasting tissue damage for some to go along with the persistent neurological damage and immune issues. Lyme is an equal opportunity pathogen; it can be systemic, and in late stage cases, it often is.

Sorry for volunteering an answer to a question directed at others.

 

[Eeyore]

So far, we have not found actual tissue damage in ME. If we did, that would completely change how the medical profession looked at the illness. It is often cited as a reason why docs don't believe ME is real - lack of end organ damage.