Horowitz patients

[Dufresne]

Hey @soxfan,

I ,too, didn't develop PEM until much later into my illness. For me it was physical first, then mental. Nowadays the physical tends to be more delayed, while the mental hits fairly quickly and is usually the result of reading too much.

I think PEM (and much of ME/CFS) results from the body having to moderate various systems due to an underlying problem with energy and stress. So it's a matter of which systems are failing. I'm lucky enough to be able to walk a few miles without repercussions, but I can't do any heavy lifting without incurring a crash. I also can't read more than about a short paragraph without becoming heavily depressed within a couple hours. I wonder if these specific problems aren't both connected to my being an avid bodybuilder and reader in my previous life.

I've also noticed that if I haven't done anything remotely exerting in the last 3-6 months this protective mechanism/warning system (PEM) disappears; at least until I overdo it again. An example of this would be my having to run for a train several months ago. I assumed I'd be toast the next day, but I wasn't. I couldn't believe it. So of course I tried the exact same thing a day or so later, guinea pig that I am, and got absolutely slammed.

I don't think PEM budges until we're able to resolve the energy problem and/or rebuild our ability to handle stress. It's my opinion the former revolves around redox, and the latter, the hypothalamus.

 

[soxfan]

@ Dufresne-I am not sure I will ever be the same...how do I rebuild my ability to handle stress? It doesn't have to be bad stress for me to crash but can also be good stress meaning socializing etc.

I truly feel strange....odd....every single day in my brain. Sometimes it isn't even because I have done anything. It just happens...which is the same with crashes. Sometimes I have no idea what has brought it on..

I have to say I do feel fortunate that I am able to do a lot of physical things without repercussions. In the beginning I was able to continue running for 2 years until I started treatment for Lyme and then I was totally unable to run again. I didn't have the stamina anymore. I am able to walk 4-5 miles daily, hike (within reason), swim, etc...

For me it is all in my brain....my sleep is always very disturbed and I wake up feeling so weird at night...it is so hard to explain but it certainly isn't normal. I just no longer have the mental capacity to keep up....I can't read the computer very long but am able to read a book or magazine....

 

[DataDude]

Hi @Dufresne -- thanks for the replies. My Lyme diagnosis is via an LLMD and based on tests from Infectolab, the ELISPOT and CD57 both being positive. I was negative based on the CDC tests (EIA result was negative, so the Western Blot was not undertaken).

One of the ways I would feel more confident in the reliability of the diagnosis is if there were significant numbers of people receiving the diagnosis, getting treated, and improving. So that's what I am looking for. I am not finding it. Of the 40 people on PR I have looked at with a Lyme diagnosis, none got sustainably better. A few -- like soxfan -- felt they temporarily got better, but their symptoms returned, and perhaps got worse for some folks. It takes alot of work to analyze people's experiences, so my analysis is partial unfortunately.

With respect to CFS, I don't have a formal diagnosis, but meet many of the criteria including PEM. I sort of live in a state of mild fatigue, and the PEM is not predictable. Sometimes I feel wiped out for days, but other times I seem OK after exercise. I generally take things easy, but am not as debilitated as others physically. My major challenges are mental -- getting work done, concentrating, stabbing/tension sensations. I feel as though I meet half the criteria for CFS, and half for PTSD -- my nervous system seems to react too quickly and strongly to stressors, and to remain agitated, as though there are no brakes on my system. I'm unemployed as a result of the symptoms and my problems started in my late teens -- now early 40s so it has been about 25 years. I have worked at times and gone to university, but have generally struggled.

You have a TBD diagnosis as well and feel that ABX were useful to you? Are you able to work and do you feel that any particular treatment has helped you move to a higher stage of functioning (say no work to part-time work or something similar)?When you say that ABX alone are not likely to be sufficient in a case with typical ME/CFS symptoms and chronic Lyme, what do you see as a generally viable combination treatment?

Thanks and hope your progress continues!

What's your chronic Lyme diagnosis based on? Do you meet the criteria for ME/CFS, or more specifically, do you have PEM?

If you have typical ME/CFS symptoms it's pretty safe to say you're not going to recover with IV ceftriaxone, or metronidazole, or whatever. Even Dr Burrascano acknowledges a chronic Lyme sufferer is not going to get well and stay that way from ABX therapy alone. And in my opinion ME/CFS is tougher. I don't know of a single ME patient who's resolved their PEM from such treatment. Which isn't to say improvements can't be made with drugs alone, just know you could get worse too. But you probably know this already.

I tested positive at Igenex for Lyme and babesia duncani. I've no doubt they are major players in my illness, particularly the latter. When babesia is neutralized my head clears up to the point that I don't have a single complaint with its functioning. A huge improvement! But had I not dealt with candida and dysbiosis to some extent before taking wormwood or cryptolepis I would never have realized this benefit. This is just one example of how things tend to be layered. It takes a fair bit of research and trial and error to figure out what's causing your symptoms and how you might relieve them. It also helps if you're lucky.

Unfortunately I haven't been able to sustain this effect due to my inability to sufficiently manage intracellular infections. This is likely the norm with ME and what I'm trying to figure out at the moment. So just when you think you've accomplished something it turns out there's another angle needing to be addressed. This is why I agree Horowitz's approach. I think throwing long-term pharmaceuticals at this disease without proper support (detoxification & anti-inflammatory strategies, etc) is risky.

On another note, mycotoxins are a huge component of my illness. I mention it because it's incredibly common with these diseases. I think anyone positive for TBD's or meeting the criteria for ME/CFS would do well to investigate this possible complication.

 

[DataDude]

@soxfan, sorry for my slow reply, very interested in your response but saw it late and a bit tired these days too.

You mentioned that you can PM me what you've tried, that would be very much appreciated, thanks

You note that you didn't start to get PEM until 2010, six years after your illness started in 2004, and that you started going on/off antibiotics since 2006. I'm wondering if the antibiotics may have contributed to the PEM? Have you used much in the way of probiotic supplementation? Where did the chelation fit into this timeline and how intense was it?

I have a bit of a concern about causing problems with treatments as I had a bad experience with antidepressants -- I was hospitalized with severe withdrawal symptoms. I have also suddenly developed bad cholesterol levels -- after a lifetime of healthy cholesterol levels -- and this started after I did a couple months of chelation. Though I have stopped chelation my cholesterol levels have not returned to normal. I have also developed a blood condition -- high red blood cell count -- which is requiring me to have 450 g of blood drained every week, and daily aspirin. This was again a sudden development -- I have multiple normal red blood cell counts until about a month after my last. I don't think that is from chelation necessarily, but the timing of some of these things worries me. Antibiotics can be quite powerful, so I am worried about creating more problems for myself if I don't really need them.

@DataDude- I did chelation for a while and it made me feel really bad. My metals were not horrible but I gave it a go anyway. I looked up side effects for each of the heavy metals I had and I really didn't have any of them. I just felt that my problems were not due to that and decided to quit the chelation...I have not had my metal levels tested since.

Dr. H really didn't push the issue either so I am guessing he was really just trying another piece of the puzzle.

I have been on and off antibiotics since 2006. I would list everything I have been on but it would take up a lot of space here. If you want to know everything I have taken I can PM it to you. I can tell you that it will be a shock....

I truly feel that my remaining symptoms which are different then when I first became ill are due to me developing CFS from not being treated for Lyme right off. I may have gone into remission but it wasn't long lasting and I relapsed shortly after having to quit Rocephin. I also feel if I had been on another abx. along with the IV I wouldn't have relapsed but that is just speculation.

I definitely feel my symptoms are CFS from reading about others on this forum experiencing the same ones and I never read about these on Lyme forums...that's how I know.

PEM..Severe mental exhaustion with little stimulation....chronic fatigue....unable to handle stress...concentration issues when driving...are all CFS....

 

[soxfan]

I don't think the antibiotics had anything to do with PEM because I only get it from mental exertion. It can be a lot of mental stress or a little. We are moving in a few months so have
Been picking out house lots...homes...everything with the builder. Yesterday I just crashed and burned. Nothing helped with the severe inner vibrations and general feeling of mental exhaustion. I laid in bed and really couldn't move.,

I took klonopin which usually helps but it did nothing. So then I went to Ativan and that did nothing. My husband said he could actually feel my torso vibrating. Took me hours and hours to fall asleep. My body would not shut down.

It was one of the worse crashes I have had. It was all due to using beyond my mental capacities.
I did chelation in 2007 for a few months and I take VSL 3 .,I am not home now but next week will PM you with the 30 or so meds I have been on.

 

[soxfan]

I wanted to add that my cholesterol levels went haywire in 2010. Despite my eating extremely well and walking 5 miles daily...nothing helped bring them back down

 

[DataDude]

Hope your move goes well @soxfan and sorry to hear about your crash. Looking forward to the PM when you have a chance!

Why don't you think that the mental exhaustion could have been caused by antibiotics? Not sure if you've seen some of the recent research on the intestinal microbiome (bacteria in the digestive tract) but there is a strong relationship between gut health and cognitive and emotional states -- depression and anxiety for instance -- so mental exhaustion (and exhaustion generally) seem like they may be influenced by changes in the microbiome, and accordingly by antibiotics.

For example, from Scientific American Feb of 2015: http://www.scientificamerican.com/article/mental-health-may-depend-on-creatures-in-the-gut/

Timing wise, it seems possible, as you got mental PEM after you tried ABX.

Looking on PR I've seen a few folks report positive experiences with probiotics, so it is a category I'm still interested in for my own symptoms, which are concentration and tension related. Like you, forms of mental exertion are draining for me, though I can have exhaustion from physical exertion too.

I wanted to add that my cholesterol levels went haywire in 2010. Despite my eating extremely well and walking 5 miles daily...nothing helped bring them back down

 

[soxfan]

I guess the mental fatigue could have been caused by taking antibiotics. It is just that it really didn't develop until about 5 years later. I started abx in 2006 and really did t have a problem with mental related PEM until 2011. My body also gets extremely overstimulated and doesn't have the ability to calm down. This happens always with extreme mental exertion.

It has been a very tough week with looking at places to live and talking with builders and realtors, at times I really was so fatigued I felt on the verge of collapse.