5/25/08 – What a month its been. My sleep did not improve and I was soon off to Washington D.C. to visit my brother and participate in the CFSAC meeting, the CAA’s Congressional Briefing and Lobby Day. Visiting DC is a good opportunity to assess how I’m doing since I do at the same time every year. This year I was clearly improved; I felt more relaxed and more talkative and my sensitivities were way down. Last year I was having trouble with the trees – not the blooms – but the odors coming from the leaves – something that really shocked and worried me. I also had a great deal of trouble with my brothers old house. The minute I stepped in there my cognitive problems skyrocketed; this time they were much more subdued.
Beside this four incidents, in particular, suggested I may have begun to get at the underlying tension I associate with this disease.
First I lost the cat. Losing the cat is not a small matter. The cat is very important and losing the cat is just about the worst thing I could do. I have the lost the cat before and although the cat turned out to be OK it was not pretty scene. Ordinarily my inability to quickly find the cat would set off a huge stress response; heart pounding, flying thoughts, shortened breath and me careening around the house madly trying to find it. This time I just calmly looked for and (finally located) the cat.
I lost $80 – again not a small matter. I almost never carry that much cash but I’d taken it out the night before I left on the DC trip. I discovered it was gone while I was in DC. Losing or misplacing this amount of money would usually really rock me. This time I rather calmly considered the situation and concluded I’d left it in some pants back home and then let the issue go: a very unusual response for me. The money ended up being in my pants.
My testimony before the CFSAC/Lobby Day. The last two times I testified before the CFSAC I was a nervous wreck beforehand. Ditto with the lobbying our politicians. This time I was much, much calmer this time even though I had little time to prepare for either. As it turned out I didn’t testify before the Committee; for some reason my name was never called. This was almost worst because I had to wait through two days wondering when I was going to be called but I was much calmer.
Walking. I ended participating at the last moment in Dr. Baraniuks spinal tap study. I wanted to push myself into something of a crash so I ended up walking alot. While I did crash to some extent; my muscles stiffened up and I was tired it was not nearly what I expected. This could have been confounded to some extent by the fact that it rained almost every day and my energy always goes up noticeably when it rains. Still I did much better.
The feeling of strength I’d had definitely left me on the trip; there was just too much going on for that. By the end of the day sitting in a carpeted room at the CFSAC I was in pain. By the lunch on Lobby Day I was worn out, my muscles were painful and I felt I was forcing everything. By the end of the day at the party afterwards I was in pain and exhausted – nothing new there.
Then I did the spinal tap. The spinal tap turned out to be rather horrendous. The ‘tapper’ took a while to find the spot. I actually felt much better immediately afterwards but carrying things to the airport set off a headache and nausea that sidelined me for about five or six days. I couldn’t stand up to do the Amygdala Training or sit up to the meditation exercises so I did nothing at all.
I’m back to the training. I do two or three sessions a day plus a two meditation sessions a day. What is happening are little improvements or signs that I believe indicate slowly increasing health.
6/06/08 – It’s been up and down since I got into Las Vegas. I definitely have more difficulty sleeping here. Its just too expensive to drive out to the desert anymore. I felt like I was not making much progress on the Retraining process then I had some wonderful sessions; it seems to go this way- progress, an extended plateau and then progress. I wonder if my body will on stand so much progress at once. That wouldn’t surprise me at all given my ‘reaction’.
I’m a bit inhibited writing because my old computer broke down. I’m on my third new one; the two earlier a Thinkpad and nice Sony FZ were too chemically obnoxious with regard to my MCS and I sent them back. This one a Dell Latitude is better but its not close to being OK. Hopefully the the chemicals will burn off over time. My sensitivities are better – but obviously I have a long long way to go in that area. Just typing on the keyboard causes my fingers to sting.
I’ve been focused more on meditation and its starting to work. I’m surprised how long its taken me to slow my breath down – its been two months. Ten years ago when I did this it happened much more quickly. I went through quite an adjustment period this time. By the end of each session I usually felt better but my body really protested at first alot of heart pounding – it was very unsettled by these breathing exercises. It’s settled in nicely now.
I can actually see the effects when I look in the mirror. My upper body appears much more robust, it actually appears larger. In general the meditation has not lead to greater energy. It makes me calmer but actually makes me feel like taking a nap – which I often do. I also feel less inclined to take on heavy scientific material. I’m starting to have a good dealof knee pain. This too is different from my earlier attempts at it. I’m sittingin a half lotus – very conducive to meditation – I’m going to have to cut back on that posture.
I’m just keeping on keeping on – nothing dramatic -the only ‘dramatic’ thing that happened was that for a while my voice dropped an octave. This was accompanied by noticeably increased relaxation. I’d noticed my voice had been getting higher over the years – I assumed it was is because of increased upper body tension. I also fairly consistently wake up with an erection – something hasn’t happened for 25 years. My libido overall is unchanged however.
My experience with this program has been slow progress punctuated by events that catch my attention and help to keep me engaged in it. I’m doing a couple of sessions of the Retraining process a day and at least two meditation sessions – much less than Ashok recommends actually. My dirty little secret is that I still haven’t watched all the DVD’s – not a good patient at all.
6/23/08 I am doing quite well with the program. I’ve gotten to the point where I generate abundant amounts of energy every time I do it. There’s a part where you can ‘scan’ your body in order to jumpstart a reaction. That used to happen almost immediately for me. I would start scanning and bang! it would seem like my body would almost jolt from this reaction; my muscles would tense up, I’d stop breathing and everything would shut down. Now there are times I stand there and scan and scan and it just takes awhile. I am definitely more at home in my body.
I was at the HHV-6 Conference/Symposium on Viruses in CFS and particularly when I was under stress – usually both standing up and talking to someone I could feel my body tighten up – really tighten up – and my breath shorten – and my muscles start to hurt. The whole scenario would come on; head starts hurting in weird areas, I experience some loss of equilibrium, voices seem to get louder and I got buried more and more by my body sensations. I’d shift around to find some equilibrium – usually by lowering my center of gravity.
As my focus became more and more scattered and my energy dropped concentrating harder was an obvious necessity but doing so is so taxing that I knew it would only last so long. What really worked was narrowing my frame of reference. This made sense – since I was obviously being overwhelmed by the amount of inputs narrowing my vision to a smaller and smaller area was relaxing.
Since I’m more a tune to the processes I go through and because I really do feel better at times the occurring the whole thing just brought home to me how many gyrations I go through in order to try and stay coherent particularly in such a stressful event as a conversation. On reflection ‘stress’ may not be the key – excitement may be as important – good excitement can unravel me just as much as stress does. Perhaps a state of excitement in the body is a key – one does not want more excitement in already overly excited system – it just goes bananas.
I had a very good week last week. This week has been more problematic given the rigors of travel and the conference etc. but overall things are still looking up, I continue to feel calmer and more myself. I did quite a bit of walking and had several nights of reduced sleep with no ill effects.
6/29/08 – Today will consist of someone else’s experience. I’ve been corresponding with several people doing the AR. Everybody’s benefited and everyone but one person is very happy with their results. One person reported they were on a bicycle trip (!) – nobody else is quite to THAT level. Ken (below), however, has quite quickly had excellent results.
“Today I have been on the Ashok Gupta Amygdala Retraining course for exactly 2 months and I am absolutely amazed at the progress I have made.
Let me tell you where I have come from – I have had CFS for over 20 years. Five years ago I was diagnosed for the first time, this was when my CFS became extremely severe and I changed to a doctor who actually knew something about it.
That 5 years was to be the worst 5 years of my life, for most of the time I was unable to do any jobs and I could walk no more than a hundred yards. On a bad day I would get up, have breakfast and then have to lie down and sleep for an hour or so. After lunch it would be the same story, lie down and sleep again and at the end of my day I would in bed by 9pm. On one such day I even had problems walking from the lounge to the toilet. I occasionally had a small recovery, it never lasted long and I would soon relapse – to push myself even a little would result in extra fatigue the next day.
Towards the end of that 5 years I got some help from mega doses of Vitamin C and injections of Vitamin B12, or sub-lingual B12 lozenges when my flesh got tired of the needle.
Then 2 months ago I started on the Gupta Program and I haven’t looked back!
Now I never have to sleep during the day, I am alert and able to get on with my life. Both physically and mentally I have improved out of sight. I no longer take mega doses of Vitamin C and no B12 either. I have been able to start again with music, I have started to play keyboards again after a lapse of 12 or more years and have joined a group of like minded people who meet in each others homes to share music. I am back to socialising where earlier I had lost all my friends and aquaintances. I’m getting my life back!
Two days ago we had an emergency. My wife was doing the weekly wash when suddenly we found water gushing out under the laundry door and flooding the kitchen, there had been a problem with the washing machine outlet and it emptied the whole lot onto the floor, it got absolutely every where and into everything. We just had to get stuck in to clean up the mess, had to shift masses of stuff outside and I had to manhandle the washing machine so we could mop up underneath it – I worked my but off, my legs went like rubber but I kept on and an hour after we finished the job I was feeling not too bad again. I had a poor day yesterday (to be expected), but nothing like I would have had after such an event before I started Gupta and I am back on course again today!
I would say that I am at least 50% possibly 60% recovered – and this after only 2 months. If you any of you decide to give Gupta a go, and its cheap enough, you do have to work at it, its no good just paying it lip-service, you do need to do the work.
Some time ago I read the following about CFS – it was that CFS is caused by stress, made worse by stress and is perpetuated by stress. What the Gupta program does is to treat this problem of stress”
7/06/08 – It has been a good couple of weeks. Particularly when I do the AR process I am so struck by how much better my body is feeling. The kind of ravaged feelings I was so used to are gone. It’s feeling relaxed and actually rather strong and resilient – a very unusual feeling. As I noted in an earlier blog there have been times I’ve felt OK and even fairly good but never ‘strong’.
I can tell I am continuing to turn down that motor – that kind of nervous tension that is much a part of this disease for me and its slowly leaving behind a sense of peace and strength. I still have a long way to go – I’m nowhere near normal – I can feel that tension – that motor – start up often during the day – but I think I’m almost subconsciously on the lookout for it and tamp it down at least somewhat almost without thinking.
The real test is exercise – vigorous exercise – something I simply don’t want to engage in yet. I’m actually exercising less than ever and I’m pushing myself less. I’m also eating less (dropped about five pounds) and am going to be earlier. I seem to have pulled back from the extremes. With regard to overdoing it I used to think well I’m screwed anyway I might as well get some work done – I used to almost live in that realm.
I’ve never had the kind of ME/CFS in which overwork had horrific consequences; I would just feel absolutely miserable and in pain – my muscles felt like they were on fire – and my thoughts would be rushing about and I would get dizzy and have trouble concentrating, etc. – so I could push it and I did. I have a better alternative.
I just got a wonderful e-mail from someone who, after many years with a very severe case of ME/CFS, seems to be recovering rapidly. Interestingly she had turned to a different kind of mindfulness stress reduction exercises earlier and had seen marked improvement but Gupta seems to have been the final key for her. I wonder if she had kind of primed the pump for Gupta with her other exercises.
Anyway things are still slowly (but I think a bit more quickly now) improving.
7/14/08 Breakthrough (!)(?) – I felt like I was on the cusp of something. I seemed to be really getting a certain part of the process – a very slippery part – about ‘scanning’ ones body plus my body had felt stronger and my legs no longer felt like concrete. Then I moved to San Diego and didn’t do well. I had a couple of mediocre days and as always I began to question the process a bit.
Then I tried something else with the program and the result was rather astonishing – I felt strong – quite strong and ‘smooth’- like quite coordinated like my old self really and it lasted for quite a while. I feel like I’ve been building up to this – slowly repairing my body – getting those good feelings back – being more relaxed – not relaxed at all really but more relaxed – just slowly re-instituting things and then – bang – it all seemed to come together. Strong stuff – very heartening.
7/19/08 – Up and Down and Up Again – I think this is real. I overdid it and crashed pretty bad – same old story – and honestly it did not take that much but then after another session last night I’m up again. This whole stress response issue is powerful and yet very ‘subtle’. Its subtle in the fact that without something like the AR to bring it to light it flies entirely under the radar. The idea that we are ‘scanning the body’ constantly is just so subtle – it’s just on the glimmering of consciousness. I’m getting pretty clear though that I engage in it subconsciously almost continuously in it when I’m ‘exercising’ (walking). When I’m writing it’s grip disappears to some extent. This makes sense given the idea that the brain is misinterpreting signals from the body does it not? Those signals must be ramped up to a much greater extent when we’re walking than when we’re reading or writing.
Saying that ‘I’m’ engaging in this scanning is misleading, though. “I” am not engaging in it – it’s more like it is engaging me and I have been fighting like mad for more than 20 years to disengage from it. The problem is that gritting your teeth and pushing through these signals probably just depletes an already whacked out stress response even more. In the end it actually reinforces the problem. .
Only now after months of this am I starting to get a real sense of how powerful it is. My sense is that trying to engage in activity in ME/CFS is like trying to push a car with the emergency brake is on. I feel like I’m beginning to really take the brakes off.
As I’ve pointed out numerous times I can feel my muscles tighten up and breath stop and these weird pains in my body start up when this scanning process occurs. The weird pain angle – head pains, chest pains, shoulder pains – these weird pains that come and go – I think is entirely part of this process. Its amazing how physical the ramifications of this process are. It’s easy to see how it could just debilitate people.
I think this is why its so clear to ME/CFS patients that this is a physical disorder. It’s a very PHYSICAL disease. I wouldn’t be surprised if, among other things, that the tiny, tiny blood vessels vasconstrict all over the body – reducing blood flows – and just knocking everything on its but.
Just think of the consequences of stopping breathing – again and again and again and again and again and again – throughout the day. Or how about having the body be put again and again in this kind of muscular straitjacket. Ultimately you may get to the point that you’re so locked up physically you can’t even take a deep breath. For me its this muscular tension that pervades my body but I’ll bet the flip side of it could be – when the system is really depleted – just the opposite – nothing there. At least I’m able to generate tension. I imagine really sick people can’t generate anything at all.
A recent study found that a negative thoughts shortened ME/CFS patients breathing patterns but that did not happen to healthy controls. Take out negative thoughts and put in activity if you wish; the point was that it was physical overreaction to a stressor. Do that a hundred or thousand times a day – always under the consciousness mind you – and perhaps you have ME/CFS.
How am I now overall? I’m in San Diego now and have had trouble adjusting. My energy has not been good. Its been pretty crappy actually. I have not been sleeping particularly well. But still when I walk around I can tell I am significantly different I am than when I was here two months ago. Its a very slow process for me but most of the time (certainly not all the time) its been an upward prcess.
I have restored some strength in my body and I feel like I’m slowly rebuilding it. I am nowhere near healthy but I am much better. A couple of days ago I had this thought – I’m going to have a great time in the upcoming years – it just popped in there. I haven’t had that thought in 25 years. It came what was possible given this sense of strength in my body. I think it was an entirely natural thought given how I was feeling – just as the other negative thoughts are entirely natural given how I’m usually feeling. Shortly after that it was back into the soup and me grinding my way through the day but I thought it was very signficant event – perhaps another marker on the way to health. Only time will tell.
7/23/08 – Let the Good Times Roll -This ‘breakthrough’ is continuing and I’m beginning to believe that exercise is in sight. This whole thing is impressing on me the idea more and more the idea that the ‘stress response’ is indeed an absolutely key aspect of this disease, which, honestly, is just unbelievable to me. Its as if an absolutely aspect of your physiology went banana’s. That what’s unbelievable to me actually – how deep the ‘stress response’ is. Its like the inner circuitry of the brain somehow got its lines crossed.
It’s possible that I’m unclear in my terms. In fact I’d bet that the stress response is not the problem. Its very possible that the stress response in ME/CFS is doing fine. The problem is that its being evoked all the time. There’s undoubtedly a threshold level for evoking the response – some level of danger or alarm – that I believe, at least in my case, has been lowered very, very dramatically. As I slowly make my way free of it – and into a relaxed, comfortable more healthy – it’s only now that I can see how constantly its been on and how easy it’s been to turn it on.
Both aspects of Amygdala Retraining are working for me, the AR process and the meditative aspects. Its taken months and months of 40-60 minutes of meditation a day to finally allow me to really slow my breathing and mind down – far longer than I expected – but its been worth it. Indeed I was always felt it was
doing me good but I was surprised how long my mind and breath stayed very active.
I think the meditation has had very positive effects on my physical health. I am breathing deeper – I am actually relaxing into my pelvis – this is where our ‘chi’ or vital energy is supposed to reside and I believe it. Before When I noticed the stress response come up (shortened breaths coming from the chest, tightened muscles, fatigue, head, neck pain, cognitive problems) I could bat it down to some extent but couldn’t really access a place of strength. I’m able at times to do that now
I was working in the garden – exercising – and I was able to switch that stress response off – and shift into a healthier state. It was dramatically different but its hard to explain. When I first got ME/CFS I saw a Rolfer who told me that my walking style was really inefficient; that instead of using the small muscles in my hips to lift my legs I was using the big muscles of my thighs.
The same thing seemed to apply. Instead of using my major muscles or my whole body to dig this little hole in the garden it was like I was using just the muscles of my arm – it was so much easier. Another aspect of ME/CFS for me has been a sense of physical awkwardness. I’ve felt like I’ve awkwardly clumped along, that I was missing any sense of physical grace – and I had a real sense of physical grace – beforehand. That should be returning.
8/07/08 Up and Down and Up Again
An interesting couple of weeks. We had a big family get together – something I look forward and dread at the same time – given how wiped out I usually get – but this went well, very well. I was more relaxed, felt I communicated better and overall felt better – very nice.
Then it was out to Las Vegas in the middle of August – a journey I didn’t want to have to take where things fell apart to some degree. I’ve been working hard, its very hot and I’ve been out in the heat too much – its very draining. That more relaxed feeling disappeared. I haven’t been sleeping well either. I’ve definitely lost ground – the AR’s have not been as effective (nor have I been doing them as much).
Two nights ago I had an interesting experience. I was having a poor night sleep – no surprise in the less than clear air of Las Vegas. I woke up early again – between 5 and 6 and remembered that Dr. Friedberg had combatted his sleep problems with meditation. If he woke up early he started meditating – which relaxed him and got him back to sleep. I did that and it worked – I meditated for about 20 minutes and at some point hit the sack and slept until 7:30 – very late for me; so late in fact my father asked me if everything was OK.
The next night was bad, however. This time I woke up about 3:30 tried meditating and was too tense and uptight for it to make a difference. I dragged my stuff inside (I was reacting to something in the air) and after stuffing myself with food was able to tune my system down enough to get me back to sleep at some point but I woke up feeling utterly drained.
But then I turned to Dr. Holtorf’s stuff. I’d put off doing Holtorf’s protocol for 6 months but when I realized I had $300 of medications (thyroid, cortisol and testerone) that were about to expire I started giving them a try. It was just a wee bit of thyroid (he said), a low amount of testerone and a pretty strong shot of cortisol I believe. I rubbed that testosterone into my shoulders, took the thyroid and I was up! Later I took the cortisol with a meal and I pretty much stayed much improved all day long.
Exercise has been a real problem for me since I got to LV; it seems that when I start walking around I run into my difficulties immediately; the physical sensations, the shortened breath, the rushing thoughts.I took those pills and all that stuff diminished greatly (!) and stayed that way for most of the day – a very nice first step with Holtof.
What does this mean? For one thing it means these negative thoughts and negative body sensations, etc. – do as Gupta suggests – result from some sort of injury. Gupta’s appears to be hitting this injury from the top – he is tamping down the alarm signals it causes to rise from the brain and Holtorf appears to be hitting it in the body.
I honestly don’t think I could have gotten this strong result with Gupta – at least not given my rather exhausted state. I can see these two approaches being complementary; Gupta believes the stress response system is whacked out – and most of the medications I have from Holtorf – not all of which I’m taking – are focused on the stress response and hormonal systems.
Repeat courses of the Holtorf protocol, however, have not been as effective. This is a standard pattern for me; a very good early result following by diminishing results over time – often ending in negative consequences. I’ve had opposite results with the AR – it has strengthened over time. Interestingly, the short term pattern is quite similar; I seem to hit peaks which then diminishes sometimes to the point where I wonder if its working at only only to hit another peak – at a higher level.
Speaking of peaks I had another kind of peak experience with the process. One of the problems I have with the AR is the last part where you’re asked to envision yourself as healthy. That’s very difficult to me to do – I just can’t seem to see that. In the process you’re asked to step toward this kind of realization of yourself – recently several times I felt like something snapped in and I was kind of kicked forward (!). I was really kind of propelled forward and I came out of it filled with energy. It was really something – the best session I’ve had and I’ve felt better.
Other small notes of progress are my dreams or the fact that I’ve been remembering them – I never remember my dreams and I have most nights over the past week. My libido which at times shows signs of some recovery and then disappears has been raring up a bit lately.
It’s just become so clear to me that any attempt to check on the body just roils the system. Its particularly clear when I’m feeling good and I notice that – its not the feeling good but the noticing that I’m feeling good – its just disasterous. It brings the very anxious question – is this going to continue of and of course checking to see if it is – at which point it doesn’t anymore.
So for me – I had a lapse but am doing better. I’m doing Holtorf’s protocol in pulses. I’m still worried about hormonal suppression. I am going to start doing the fungicides (tendomax and the anti-parasitic) as directed. I’m probably being overly cautious with the hormones but I’m doing fairly well – I expect to continue to improve – and so I’ll do them in pulses and take whatever benefits they bring at a slower pace than otherwise.
6/ 26/08. I’ve been putting this off. Things have not gone so well. I did finally finish the DVD’s. (Now I’m ready the start the training) I have a block about instructional DVD’s. There are excellent ones on web design, for instance, – something I’m very interested in – but I hate sitting through them. This problem is part of parcel of CFS for me; it’spart of this ‘rushing mind’, inability to relax, ‘wired and tired’ part of CFS. I’ve observed it many time in many areas and of course its shown up here. In first DVD you’re asked to write various things down and then use that paper to remind yourself of them. I scribbled a few things down and then lost the paper – and then ended up doing the exercises from memory. I immediately lost the poster you’re supposed to use and never found it. The inability to just settle down and relax has been a key part of CFS since I can remember.
I tried a key exercise in the program twice – didn’t like it – and never went back. I got halfway through the third DVD – decided that I’d got what I needed and put them away for 4 months. I never got to the part where Ashok Gupta recommends that you watch a couple of sessions several times a week and the part where you says watching it once will not work. I never got to the visualization exercise or the audio tape or all the recommendations that really grounded the technique in practice. It is just so typical. I have very little ‘down time’ – I don’t go down until I’m forced to go down basically – which is obviously not healthy – that was very clear from watching the last DVD.
I have not been doing particularly well. Its very hot here – always over 100 degrees in August and my chemical sensitivities demand that I spend as much as possible outside – so the summer in Las Vegas is typically very draining. I’ve being the meditation fairly consistently but not the process. I’ve been meaning to watch the whole program, well for 6 months now, but what got me to do it was the reappearance of a sign of tension coming back. I used to notice myself hunching my shoulders frequently – it wasn’t painful but finding my shoulders up around my ears was clearly a sign that I unconsciously quite tense. That came back and I finally decided to take the time out of the day to finish off the program. It was quite illuminating.
The AR has really highlighted the turmoil in my body. Its become clear that stressors of all kinds – even very small ones – throw my body into turmoil. This includes such simple things as talking to a checker at the supermarket, simply walking around – movement in general, any attempt to assess how I’m doing physically, and just general negative thoughts and feelings. They all seem to be able to tie me up in knots rather quickly; I tense up, breathing shortens, feel disoriented – the whole story. Its hard for me to imagine on a personal level that Ashok Gupta is not correct here.
But will the AR be able to turn all of that off? For some people the answer seems to be an emphatic yes. For myself I don’t know. I had a very good day and then I did two shorts walks on two day – probably 15 -20 minutes each – and woke up with my old tightened beaten up, painful muscles. It didn’t take much at all. I haven’t done that in a while. I used to do these walks regularly! Since starting Gupta I’ve moved more into my comfort zone physically – a good thing – since several practitioners say ME/CFS do too much. I’ve definitely lost a great deal of ground with the heat, however. Hopefully as the weather cools off I’ll be able to regain that ground.
With regards to Holtorf both the thyroid and testosterone caused jitteriness. The anti-parastic and anti-fungal have helped to some extent. I’m now taking the cortisol regularly. Nothing huge to report in this area.