Who has severe and disabling CFS/ME without Pain?

[Cloud]

Hi Lisa,

Yes, I moved from a place that had an obvious mold problem and possibly even chemicals. You could smell it. My friend with MCS couldn't come in my house. I think it was in the carpet. I used to find mushrooms growing in the corners in that carpet, lol. But mushrooms grow everywhere here. I'm a clean freak of sorts, but I was too sick to clean my carpet for a long time. I should of had in home support, but I was too sick to go and apply for it. Anyhow, I did move from there into a place that's still not perfect, but much better than that old place. I've had a significant improvement since that move that can only be due to the change. I did wash everything and threw many things out. I still have a few items of concern like my leather jacket. Mold seems to like leather and since it requires special cleaning, I'm yet to do that one.

I really don't think I have the outdoor exposure problem. Could be wrong, but don't think so. Weird Oslers Web symptoms? (been so long since I read the book).

 

[alice1]

Dr Klimas diagnosed me with Chronic EBV which I've had for 24 years.
The fatigue has been severe along with brain fog but I've never experienced pain.I"m so sorry for those of you who experience pain along with all the other awful
symptoms.

 

[ixchelkali]

I had very little pain for the first few years I was sick. I mostly had the flu-like feeling, night sweats, neurological symptoms, and orthostatic hypotension. Now I get more of the fibro type pain; stiff & sore tendons in cold, damp weather; and occasionally sharp, stabbing neuralgia. But the pain is not nearly as disabling for me as the post-exertional malaise, the so-called fatigue, and the orthostatic hypotension. I'm largely housebound but am usually able to move around the house to take care of some daily living tasks, with frequent rests.

 

[slayadragon]

Hi Lisa,

Yes, I moved from a place that had an obvious mold problem and possibly even chemicals. You could smell it. My friend with MCS couldn't come in my house. I think it was in the carpet. I used to find mushrooms growing in the corners in that carpet, lol. But mushrooms grow everywhere here. I'm a clean freak of sorts, but I was too sick to clean my carpet for a long time. I should of had in home support, but I was too sick to go and apply for it. Anyhow, I did move from there into a place that's still not perfect, but much better than that old place. I've had a significant improvement since that move that can only be due to the change. I did wash everything and threw many things out. I still have a few items of concern like my leather jacket. Mold seems to like leather and since it requires special cleaning, I'm yet to do that one.

I really don't think I have the outdoor exposure problem. Could be wrong, but don't think so. Weird Oslers Web symptoms? (been so long since I read the book).

I'm so happy to hear this! It's a lot of work to find a new place, move and wash everything. I'm really glad that it helped you.

I think you're doing this in a good way. Pushing in the direction of getting more and more clear of this stuff is much more reasonable and doable than jumping headfirst into something extreme.

It would be interesting to hear if you learned anything along the way that might be of help to other people pursuing this.

Following are the "Osler's Web" type symptoms that I think are associated with the outdoor exposures:

> These can include a feeling of having a needle or dagger through the heart; heart palpitations; unusual memory problems (such as the inability to remember the name of one’s own town); dyscalculia (the inability to do math as simple as 3+5); the inability to read even a sentence; disappearance of short-term memory; lack of memory for numbers (even two-digit numbers for a few seconds); “white outs” where all thoughts vanish for hours (even when people are making a conscious effort to respond to a question); loss of spatial skills (such as the inability to put together a four-piece jigsaw puzzle); extreme suicidal tendencies; excruciating migraine-like headaches; brain swelling; inability to stand or sit up for more than 30 seconds; gait abnormalities; tendency to topple over when standing with feet together; prefrontal lobe cortical seizures (sweating, pallor, elevated blood pressure, tachycardia, dizziness, feelings of losing consciousness, intense emotions, perceptual disturbances, exhaustion); organ pain; extreme sore throat (“gargled with battery acid”); severe trembling; and general feelings of agony.

Regardless of whether you have those, it would be interesting to know where in the Pacific Northwest you live.

Thanks for letting me know about your experience.

Best, Lisa

 

[Cloud]

I'm so happy to hear this! It's a lot of work to find a new place, move and wash everything. I'm really glad that it helped you.

I think you're doing this in a good way. Pushing in the direction of getting more and more clear of this stuff is much more reasonable and doable than jumping headfirst into something extreme.

It would be interesting to hear if you learned anything along the way that might be of help to other people pursuing this.

Following are the "Osler's Web" type symptoms that I think are associated with the outdoor exposures:

> These can include a feeling of having a needle or dagger through the heart; heart palpitations; unusual memory problems (such as the inability to remember the name of one’s own town); dyscalculia (the inability to do math as simple as 3+5); the inability to read even a sentence; disappearance of short-term memory; lack of memory for numbers (even two-digit numbers for a few seconds); “white outs” where all thoughts vanish for hours (even when people are making a conscious effort to respond to a question); loss of spatial skills (such as the inability to put together a four-piece jigsaw puzzle); extreme suicidal tendencies; excruciating migraine-like headaches; brain swelling; inability to stand or sit up for more than 30 seconds; gait abnormalities; tendency to topple over when standing with feet together; prefrontal lobe cortical seizures (sweating, pallor, elevated blood pressure, tachycardia, dizziness, feelings of losing consciousness, intense emotions, perceptual disturbances, exhaustion); organ pain; extreme sore throat (“gargled with battery acid”); severe trembling; and general feelings of agony.

Regardless of whether you have those, it would be interesting to know where in the Pacific Northwest you live.

Thanks for letting me know about your experience.

Best, Lisa

Yep, those symptoms fit very well, especially all the cognitive problems. Only ones on that list I haven't had are: extreme suicidal tendencies and migrains.

I'm in Northern Ca. I have pics of home on my profile

 

[dannybex]

Interesting Lisa...

What I now believe is that the trigger point pain is due to the fascia being all "gummed up." William Rea talks about this concept in his book. Enough toxins turn the fascia (which should be sort of a gel consistency) hard (more like a cross between styrofoam and stuck-together saran wrap), thus impeding the lymph and electrical impulses (and to a lesser extent the blood) from flowing through. One interesting thought here is that gliotoxin (a toxin made by candida and aspergillus) substitutes for glutathione in the fascia, making it all gummy. But other toxins might affect it as well.

I've managed to address this problem with neural therapy and other bodywork. Lymph massages are supposed to be helpful too. One thing that's also helped is a probiotic called ThreeLac. I hate to sound like an ad, but this seems to have a much better effect than other probiotics. Most probiotics have Lacto bacteria in them, which is inflammatory. This one appears to be anti-inflammatory. Rea suggests that inflammation can be an issue with the fascia, and controlling yeast (which could be part of the goo since it spreads throughout the body) seems only helpful as well.

...

RE not having pain throughout much of my illness: I feel sure that for many years during my illness, I was releasing no toxins whatsoever due to my and heavy mold exposure. (The body refuses to release stored toxins when the external toxic exposure is high.....the combination of the two is too stressful and a natural defense mechanism kicks in, I think.) And if there are no toxins that are on their way out, it doesn't particularly matter if the fascia is gummed up in terms of pain. (Electrical impulses and blood circulation is impeded, but those don't create pain.)

Hi Lisa,

Very interesting comments, thanks for your post.

I finally got the methylation panel done, and it showed I have a partial block -- almost all folate metabolites were low, so have started on the various bioactive forms, plus a couple of the recommended b12's -- and am experiencing some increased pain and tightness, which I think is what you're talking about re the fascia? It's not unbearable, but is worse in the AM, so I'm going slow.

But interesting that you should mention Threelac. I took that years ago, probably 2003(?), and found that it reduced my anxiety so much that I thought I could stop the Klonopin. But it's pricey, so I had to stop. (It's also controversial, which is another novel.)

Anyway, I'm curious both about what specific types of benefits you felt while taking 3-lac, and also about your statement that lactobacillus bacteria are inflammatory. I hadn't heard that before. And do you think that taking both...or rotating probiotics would cancel each other out?

Also curious about your comment that blood circulation issues don't cause pain. It seems to me that when I do have more pain, that part of my body is also a lot colder, paler...and then the pain reduces when the (hand/foot/back) warms (and pinkens) up due to better circulation.



Thanks in advance,

Dan

p.s. Have had candida (and "non-candida") yeast issues for years...by conventional and non-conventional tests.

 

[hollie9]

I had horrible pain, mainly headaches, back pain, trigger points, in the first two years I was sick. Then it gradually subsided and now I don't have pain from this illness anymore. I do have some arthritic pain, but that's another story.

Hollie

 

[slayadragon]

Yep, those symptoms fit very well, especially all the cognitive problems. Only ones on that list I haven't had are: extreme suicidal tendencies and migrains.

I'm in Northern Ca. I have pics of home on my profile

Well, those are the symptoms I don't like to see.

Not everyone who has ME/CFS has all those symptoms. Some people fit the Canadian Criteria, and have all the immune system abnormalities (e.g. low NKC activation, high Rnase-l and LMW Rnase-l, herpes viruses, various cytokines, XMRV, die-off and detox reactions etc etc.) but don't have those symptoms. They are sick, but not in that particular way.

This is what I currently believe. Take it for what you will.

It's my belief that the symptoms above are associated with a particular kind of outdoor biotoxin. Unfortunately, getting away from it is not as easy as moving to another building. There are some regions that I just don't go, because I don't want to get hit with it.

The only way I've been able to predict where it is so far is by looking at the symptoms of people who live there. So far, when I've found people with those sorts of symptoms and then visited them, I immediately get sick with the same sorts of symptoms. So I've stopped doing that exercise.

Chicago is pretty much safe from this stuff in summer, problematic in winter (November through February). I don't understand why, but this season effect seems consistent in most places.

I really am the angel of death, aren't I? Sorry about that....

Best, Lisa

 

[slayadragon]

Hi Lisa,

Very interesting comments, thanks for your post.

I finally got the methylation panel done, and it showed I have a partial block -- almost all folate metabolites were low, so have started on the various bioactive forms, plus a couple of the recommended b12's -- and am experiencing some increased pain and tightness, which I think is what you're talking about re the fascia? It's not unbearable, but is worse in the AM, so I'm going slow.

But interesting that you should mention Threelac. I took that years ago, probably 2003(?), and found that it reduced my anxiety so much that I thought I could stop the Klonopin. But it's pricey, so I had to stop. (It's also controversial, which is another novel.)

Anyway, I'm curious both about what specific types of benefits you felt while taking 3-lac, and also about your statement that lactobacillus bacteria are inflammatory. I hadn't heard that before. And do you think that taking both...or rotating probiotics would cancel each other out?

Also curious about your comment that blood circulation issues don't cause pain. It seems to me that when I do have more pain, that part of my body is also a lot colder, paler...and then the pain reduces when the (hand/foot/back) warms (and pinkens) up due to better circulation.



Thanks in advance,

Dan

p.s. Have had candida (and "non-candida") yeast issues for years...by conventional and non-conventional tests.

StormySkye, who used to post on ProHealth and occasionally posts here, introduced me to ThreeLac.

She had experienced severe trigger point pain for many years, as part of general ME/CFS. I visited her in Kansas this past summer and we discussed her history.

She first got sick in the early 1980s working in a bad building in Iowa. She then spent many years living in a particular neighborhood that (she realizes now when she goes back) was particularly bad. Her current neighborhood and her current house are excellent. She lived there for quite a while before getting better though. (We think that her contaminated stuff may have been a factor in that.)

She said that she decided to take ThreeLac just as an intuitive guess that it might help. Within five days, her pain diminished and then pretty much went away. She said that after that, she was able to take pathogen killers and things to promote detox and have them work more effectively.

This seemed too good to be true, but I decided to try some anyway. This was at the beginning of summer. The fascia/trigger point issue was my main roadblock in terms of doing detox at the time. If I pushed too hard, the trigger points would swell and hurt. It wasn't so much the pain I minded, but the idea that the toxins were getting "stuck" rather than moving through the lymph and then out of the body.

Within about two weeks, the ThreeLac more or less resolved that issue. I spent the rest of the summer detoxing very fast (using more B12 and Metafolin/FolaPro/Deplin). I've still been using neural therapy occasionally, but to a much lesser extent than in the past.

I had a really good summer in general. Cognition has been excellent (often pre-illness), emotions were good, biotoxin reactivity was down, reactivity to other substances was gone. I don't know how much might have been due to the ThreeLac itself, or to the detoxing that it allowed, or the Valcyte finally kicking in. Maybe all of these.

The idea that some probiotics can be proinflammatory and thus bad for us is pretty new. I had a MetaMetrix IONS test done in late 2007 that suggested that, and I've since heard it from other sources. Lactobacillus ones (which are in just about all probiotics) seem to be the inflammatory ones.

I used to believe that Dr. Guyer's own probiotic formula was a good thing for my candida, and likely it was. But for the time being, I'm just taking the ThreeLac.

I don't know if the blood circulation is restricted by the fascial tightness. It seems pretty clear that it affects the lymph and the nervous system. But our circulation issues.....certainly there are other things going on with them. And thinking back on the times when I used to have cold hands and feet....yes, that's pretty painful.

Best, Lisa

 

[Cloud]

Well, those are the symptoms I don't like to see.

Not everyone who has ME/CFS has all those symptoms. Some people fit the Canadian Criteria, and have all the immune system abnormalities (e.g. low NKC activation, high Rnase-l and LMW Rnase-l, herpes viruses, various cytokines, XMRV, die-off and detox reactions etc etc.) but don't have those symptoms. They are sick, but not in that particular way.

This is what I currently believe. Take it for what you will.

It's my belief that the symptoms above are associated with a particular kind of outdoor biotoxin. Unfortunately, getting away from it is not as easy as moving to another building. There are some regions that I just don't go, because I don't want to get hit with it.

The only way I've been able to predict where it is so far is by looking at the symptoms of people who live there. So far, when I've found people with those sorts of symptoms and then visited them, I immediately get sick with the same sorts of symptoms. So I've stopped doing that exercise.

Chicago is pretty much safe from this stuff in summer, problematic in winter (November through February). I don't understand why, but this season effect seems consistent in most places.

I really am the angel of death, aren't I? Sorry about that....

Best, Lisa

Oh I wouldn't rule out environmental bio-toxin. Just because I can't discern that as a contributer, doesn't mean it isn't so. Also, I spent lots of time in Tahoe in the 80's, but I didn't really get suddenly floored like those folks did. If it is environmental, either it's new (last 20 years) in the environment, or I became more vulnerable to it because I lived here most of my life without health problems. I guess you could be my canary and come check it out. Either that, or it's time for a road trip.

 

[slayadragon]

Oh I wouldn't rule out environmental bio-toxin. Just because I can't discern that as a contributer, doesn't mean it isn't so. Also, I spent lots of time in Tahoe in the 80's, but I didn't really get suddenly floored like those folks did. If it is environmental, either it's new (last 20 years) in the environment, or I became more vulnerable to it because I lived here most of my life without health problems. I guess you could be my canary and come check it out. Either that, or it's time for a road trip.

This is how it seems to work.

Prior to getting sick, those of us who are innately biotoxin/mold responders may be somewhat affected by the "?" in the outside air, if we get hit with it in large enough quantities. I occasionally had meltdowns where I'd get in an argument and then start crying for no particularly good reason, for instance. Or there may be other emotional reactions.

A long exposure to toxic mold changes that. It seems to grind down at our defenses little by little. Maybe the long-term inflammation causes XMRV to activate more. That would just be speculation.

After long exposure to a moldy environment, the "?" changes from being problematic to horrific. It results in the symptoms I mention above.

I've gotten a little better at withstanding this stuff, but I really try to avoid it. It takes too much out of me.

Best, Lisa

 

[illsince1977]

Been sick 33+ years. No "pain", just crushing fatigue that definitely hurts, just don't think it's the same pain so many here experience. I do have headaches, though, but I've had bad headaches/migraines since childhood (before CFS onset).

 

[dannybex]

...She said that she decided to take ThreeLac just as an intuitive guess that it might help. Within five days, her pain diminished and then pretty much went away. She said that after that, she was able to take pathogen killers and things to promote detox and have them work more effectively.

This seemed too good to be true, but I decided to try some anyway. This was at the beginning of summer. The fascia/trigger point issue was my main roadblock in terms of doing detox at the time. If I pushed too hard, the trigger points would swell and hurt. It wasn't so much the pain I minded, but the idea that the toxins were getting "stuck" rather than moving through the lymph and then out of the body.

Within about two weeks, the ThreeLac more or less resolved that issue. I spent the rest of the summer detoxing very fast (using more B12 and Metafolin/FolaPro/Deplin). I've still been using neural therapy occasionally, but to a much lesser extent than in the past.

I had a really good summer in general. Cognition has been excellent (often pre-illness), emotions were good, biotoxin reactivity was down, reactivity to other substances was gone. I don't know how much might have been due to the ThreeLac itself, or to the detoxing that it allowed, or the Valcyte finally kicking in. Maybe all of these.

The idea that some probiotics can be proinflammatory and thus bad for us is pretty new. I had a MetaMetrix IONS test done in late 2007 that suggested that, and I've since heard it from other sources. Lactobacillus ones (which are in just about all probiotics) seem to be the inflammatory ones.

I used to believe that Dr. Guyer's own probiotic formula was a good thing for my candida, and likely it was. But for the time being, I'm just taking the ThreeLac.

I don't know if the blood circulation is restricted by the fascial tightness. It seems pretty clear that it affects the lymph and the nervous system. But our circulation issues.....certainly there are other things going on with them. And thinking back on the times when I used to have cold hands and feet....yes, that's pretty painful.

Best, Lisa

Hi Lisa,

Yup, pretty difficult to walk or even stand if the feet are cold and painful. I think it might perhaps be more of a low blood volume thing, an electrolyte imbalance, or maybe a microcirculation issue, as even when my feet are icy cold and pale, I can still feel the pulse on the inside of my ankle. But they definitely feel a lot better when they're warmer and pinked up. Circulation is a good thing.

Anyway, thanks so much for your reply. The doc upped my hydroxyb12 drops to 2, but the rest of the folate doses are staying the same for now (she said I'm starting to dump heavy metals). A friend ordered some Threelac for me today, so will update in 2-3 weeks.

 

[LauraB]

I've been diagnosed with clinical CFS/ME. I have no pain. When I first became sick I had some tender lymph nodes in groin and armpits, but that has subsided long ago. My major symptoms are crippling fatigue, pretty much housebound, need to lay down much of the day, horrible insomnia, this was my first symptom, came on dramatically with malaise and being in a state of "hyperdrive" for first few months, then fatigue hit. Malaise and bloating, gut problems are with me all the time. I believe my illness was triggered by going menopausal, kind of the last straw, Feb 2009. I also started a new job that month, I had a terrible tooth abscess going on at that time, a perfect storm came together. I did have a fainting spell in the shower Nov 2008 and my sleep really deteriorated a few months before this all hit, but I just thought it was part of going menopausal. Ended up quitting my job June 2009 because my health so drastically deteriorated.
Through all this, I have not experienced pain, extreme malaise yes, but not FM kind of pain. I started receiving ampligen 12 weeks ago, the lack of pain almost excluded me from ampligen treatment, however my tilt table test, (fainted)stress test proved I had POTS and neurally mediated hypotension. Have crashed 2 different times, totally down for months since the onset of this.
I believe the hormonal roller coaster of perimenpause triggered my illness. I am grateful I don't have pain, and hope it stays that way.