20 month later – an update and request

“Know of a doctor in the Philadelphia region who has a good track record with CFS patients?” – from reader below

In December 2015 a reader emailed me describing the results of selectively following suggestions from this blog.  She did an update in April, 2016

“At the time I found your blog, these were my symptoms, all of which, disappeared or diminished within days  of taking action based on reading your blog (except for the asthma and allergies, which nonetheless somewhat better)”

I just got an update with a request that I am sharing with my readers in the hope that they can help:

“Hi, Ken! I don’t know if you remember me as it has been a couple of years since I’ve been in touch. I continue to read your blog often and still really appreciate the work you are doing (though it is a bit over my head lol).

I am writing both to update you on my situation, and to ask if you have any words of wisdom.  I can write a background summary for you again if you need it, but the best summary is probably the one that you posted back in December 2015.

Anyway….the good news is that since my “miraculous recovery” that I wrote you about, my CFS has been *pretty much* managed in that the physically painful symptoms are still gone, though they will start to come back if I discontinue treatment with supplements, probiotics, etc.

But….I still haven’t found a doctor to treat me and at present I fear that I may be on the verge of a relapse. I am having a lot of trouble with motivation, energy level, planning, and some brain fog. And after about 18 months or more with no upper respiratory infections, I have now had 3 since December, all of them going to bronchitis. My health collapse previously was preceded by chronic upper respiratory infections. 

I have moved from …..  to Philadelphia last fall…..do you by chance know of a doctor in the Philadelphia region who has a good track record with CFS patients?

At present I am working at trying to get a referral through my primary care doctor, but I am not hopeful because on my “get to know you” visit with him in January I presented him with my CFS history and asked about a referral and his response was “it seems like that was in the past and you are doing really well now.”

Two places here that pop up when I search “CFS Philadelphia” are The Marcus Institute for Integrative Health and the Garabedian Clinic, if you have ever heard of them.

Thank you so much for all you do. If it wasn’t for you I think I would probably have been virtually bedridden for the past three years. As it is I still am living a limited life and would like to broaden that.

Take care,


November 2016

Hi, Ken!! I hope you are well!! 

Even though I have been out of touch I am still reading your blog and appreciating it greatly, and have shared it with others.

I wanted to give you another update….the last time I wrote you, I had just tried Symbioflor II, which really didn’t work for me, and I also asked you about how you defined “remission” and I followed your advice and got a really undemanding part-time temp job which lasted couple of months and which I enjoyed a lot but which let me know I didn’t have as much stamina as I thought I did because I got sick the first week in and then was back to sleeping whenever I wasn’t at work. There was also a lot of family upheaval and stress ……

Anyway, all that is background to the fact that I am actually doing pretty well in many ways, much thanks to you, plus a couple of other things that I have started doing that seem to be shoring up my results. I would say that I am at 60 – 70 percent energy most days, with that being pretty steady. In other words, without the energy surges and crashes I used to have before I got sick. I’m not taking naps, and all in all I’d say I have enough energy to get by on except the one deficit I really still have is in drive and motivation and the ability to concentrate (I sort of think of those three combined as one thing)

 

Here’s what I am doing:

  1. Using the CFS Remission model – I will send you a detailed list of what I am taking in a day or two. I made changes based on your suggestion that I alternate between Prescript Assist and Equilibrium, which worked well (and if you have another broad spectrum probiotic to recommend I would be interested in hearing about it). I also tweaked my herbs based on the results of your reader survey, and added in D-Ribose at the suggestion of a friend with fibromyalgia (and then I saw that you had written about it though I somehow missed it).
  2. I finally saw a naturopath in October who said the CFS/ME diagnosis was pretty obvious. I printed out my initial letter to you and the other posts of mine you included on your blog, as well as your disease model. I gave them to her when I saw her but she hadn’t read them at the time – perhaps she’ll comment when I see her next. She did look at my supplement list, though, and gave it the thumbs up. She also made some diet recommendations. Here’s where it gets pseudo-science-y. She recommended the Blood Type diet, which I am aware has been debunked. I am blood type O. What I noticed about food lists for me is that many of the foods were those I had already been avoiding from the histamine restricted diet. Also, I had noticed that I felt a lot better when I ate beef, which according to the BTD is probably the best source of protein for me. It also recommended against grain (which you have also) and dairy. So I just chose to interpret her recommendation primarily as keep avoiding histamines, keep eating beef, and cut out milk and most grains, and of course most sugar and that seems to be working for me. I would say it has made the difference between having steadier energy vs. surges and crashes, which I was still having up until I started eating this way. I have also lost a little bit of weight, which I am happy about though I wasn’t really trying to do that.
  3. I have gradually started exercising again. As you know it’s hard to exercise with CFS, not to mention contraindicated, so I had cut way back and was pretty inactive and deconditioned as a result of basically sleeping a whole year, and then when I got whooping cough you basically can’t exercise without triggering a fit that makes you feel like you are going to die. I literally once turned blue from doing the kind of yoga where you do nothing but lay on floor and breathe; it was terrifying. So despite the fact that exercise has always been my go-to for managing my depression, I was scared to start exercising again. I started with walking (since I have a dog) and using Audible and or/ talking to my husband on a headset while I walk, and I am enjoying it immensely, averaging about 8,000 steps a day, and sometimes a lot more – I got lost when I visited my husband and walked 11.5 miles and expected a crash afterwards, but none came. Yay! I have also started swimming twice a week (deliberately doing it *much* less strenuously and with less duration than I used to, because I think over-swimming was part of what triggered my CFS or mono or whatever my initiating event was) and rather than having to nap after a workout I feel energized. I want to do yoga again but the turning blue scare is still holding me back a bit even though I know I am recovered from whooping cough…if my heath holds up I will ease my way into that too.
  4. This is something that I haven’t mentioned before, I don’t think….I have had depression on an off since adolescence, sometimes acute, sometimes low-grade, and have been off and on antidepressants since my twenties. Most recently, I was on them for about 10 years, and at the time I got whooping cough I had three prescriptions going. While acutely ill with whooping cough, I was too sick to take them and thus went off them without intending to. I didn’t want to start them again without talking to my prescriber, but, meanwhile, between the herbs and probiotics etc., which I did restart when I was able,  my mood problems diminished drastically. I never did go see my prescriber and now have been off for almost a year, and feel better than I did when I was taking the meds (even though they helped and I am not an anti-med person at all). Often, if I go through a patch of getting tearful easily, adding in or increasing the Miyarisan takes care of it within 24 hours.
  5. As I mentioned above, the thing that keeps me from being what I think of as functional is my lack of focus of motivation, which no longer rises to the level of brain fog but which really holds me back. Coffee and tea disagree with me. But one energy drink, or even half of one, and BAM! I am good for the day. My drink of choice is organic Rock Star, which contains sugar, green coffee extract, guarana, ginseng, vitamin B12 and taurine. Of course the naturopath told me not to do this, and I have been saving it for days when I really have to get a lot accomplished, but it would be nice to be able to be more productive all the time. So far, there doesn’t seem to be a big downside (except when I drank three whole cans three days in a row – some of my symptoms returned) and I’m considering using it more consistently, half a can per day, though it is basically  just enhanced soda and I have always disapproved of soda. I tried taking ginseng pills and also guarana pills with relatively little effect, haven’t tried green caffeine or taurine. What do you think? It would make life easier for my husband, my other families, and not to mention me if I could be a more productive version of me on a regular basis.  Alternatively, I have found that chocolate sometimes has the same effect, either the 85% kind from Trader Joes, or these dark chocolate covered almonds they have at Costco. There is something unnerving in trying to fuel my ability to concentrate with, essentially, candy and soda when I am trying so hard to be healthy in other ways and putting a lot of work into it.

 Anyhow….I wanted to let you know I am still around and still “working the program” and very grateful to you.

 Happy Thanksgiving!!


Bottom Line

This person has not done ubiome yet, and I would strongly urge it. They were working off the earlier post before I started detail analytics of microbiome. Ubiome with the new site would give very specific advice which have a good probability of improving the remaining symptoms.

REMEMBER: Those suggestions are NOT a replacement, but additional fine tuning.

This is an education post to facilitate discussing this approach with your medical professionals. It is not medical advice for the treatment of any medical condition. Always consult with your medical professional before doing any  changes of diet, supplements or activity. Some items cites may interfere with prescription medicines.