1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

Dr. Terry Wahls - MS recovery plan

Discussion in 'Other Health News and Research' started by xchocoholic, Dec 6, 2011.

  1. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    A few quick updates. I am still doing well.... Now using a cheap Canadian (Trophic) potassium iodine liquid supplement to bypass possible bromine problems in kelp and kelp tablets; it lists 325 mcg per drop, which means in practice 2-4 drops in a bit of water should work OK. Seems steaming those goitrogenics reduces that effect about 50%, so now take some of them steamed with (as) my supper. Have also found that the average iodine intake among Japanese is somewhere in the region of 1 to 3 mg per day, and they are a long-lived nation, so that should not cause problems (Theodore T. Zava, "Assessment of Japanese iodine intake..."--sorry, don't have PMID number handy). Will get retested in about 3 months.
    So onward and upward with the Wahls project! Best, Chris
  2. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    I used to sprout seeds but got out of the habit. I could never remember to rinse them 3 times a day.
    An automatic / electric sprouter might help ..

    hi chris ..

    Thanks for the iodine reminder.

    I can't handle steamed brussell sprouts either but I have hashimoto's. I appear to be extra sensitive to goitrogens. I used to make a raw cabbage
    and brocolli salad until I figured out it never gave me any energy. Leafy greens always give
    me an energy boost.

    In case anyone else needs a hardy salad dressing .. I'm making one from avocado, egg yolks, honey, lemon, evoo, s & p, garlic pwdr and raw garlic. Blend the honey, lemon (acv or balsamic would work too), evoo and spices first (this
    was my original dressing but it wasn't very filling). Then
    mash the avocado and eggs in. I only use the yolks cause I'm allergic to the whites.

    Tc .. X

    Ps .. Please ignore my typos and grammatical errors. I'm using a tablet.
  3. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    http://www.terrywahls.com/about-Terry-Wahls

    What an odd statement coming from a website where the author is more than qualified to know if a patient is cured ...
  4. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    I was thinking about why Dr Wahls has healed and why we may not ...

    FWIW ... My ability to walk and maintain balance, ataxia, came back with a year after eliminating gluten, etc. My brain lesions were gone on a MRI or CAT scan I had done a year or two after going GF, etc. That was back in 2006 / 2007.

    From what I undertand about MS this is similiar to what happened to Dr. Wahls too. From what I've witnessed in the GF community, it's not uncommon for some gluten related disease processes to be reversed in that length of time. Sometimes there is too much damage tho. MS has been linked to gluten but I'm not if all of it is ... Her diet would've eliminated all traces of gluten tho.

    We have more going on than this .. Well some of us do ... We have upregulated immune systems that we may or may not be able to reverse. So far, according to my stool tests and other tests, my immune system is still in high gear. I still over produce gluten antibodies. My thyroid antibodies were 2600? last year .. And my easoniphils (sp?) were extremely high last year.

    I already knew that I had high viral titers for 3 different viruses ... AT last count, my EBV was 7 times the norm. Die EBV die ... ; )

    Now ... part of the problem with being a gluten antibody overproducer is that antibodies block nerve fibers. If it only takes a tiny amount of gluten to produce massive antibodies, the nerve fibers will be blocked much or all of the time. Nerves can't operate this way ...

    At any rate .. I just wanted to pop in here and see what you all thought about this .. tc ... x

    ps. i have company arriving in 2 hours so I many not be back today ..
  5. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,052
    Likes:
    3,222
    N. California
    Hi X--

    I am certainly not doing the diet in the strict sense that TW recommends it, so maybe I shouldn't be surprised that I don't notice much change at this point. I got very OD'd on the cruciferous vegies, by eating far too many each day and needed to back off on them. For now, I am rotating which greens I eat, so I don't get into the same problems.

    I have not eaten gluten for a couple years, so that is a non issue. I do eat some goat yogurt when I get the urge, but don't seem to notice any bad symptoms with that.

    I have a lot of heavy metal toxicity, and definitely have a viral load to contend with as well, and I don't think the diet will be enough to manage that.

    I continue to plod forward and am open to investigating my options and maybe even finding something that works. WOuldn't that be nice! :rolleyes:
  6. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    Hi Dreambirdie,

    I hear you on the veggie overload ... bleh ... it's a pain trying to keep up with all this too. Variety helps .. BUT like you said, it's worth trying whatever we can to get over this ...

    That's great that you gave up gluten awhile back. Seems like the word is out now on gluten. I get black marks under my eyes and on either side of my nose if i eat any dairy whatsoever so I can't have it. I "thought" it would be ok, but my doc gave me the look when I showed up at her office once with shiners ... esp cause I knew where it was coming from. :eek:

    I'm interested in learning more about detoxing from heavy metals so I've been paying a little attention when I see this mentioned now. I saw yesterday that pectin in apples can help detox heavy metals. So, it's more apples here .. I can't afford any iv treatments so I'll have to stick to cheapo methods.

    tc ... x
  7. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,052
    Likes:
    3,222
    N. California
    Heavy metals... argggghhh! The bane of my existence. I have tried many many remedies to detox them, but most have been just too much for me to handle--mobilizing too much toxicity out of my cells at once, and leaving it up to my blockhead methylation to deal with it all. :rolleyes:

    In my case, I have to say slow is the way to go. Once I have the heavy metals mobilized (just small amounts of the SMP supps do the trick for me) then fruit pectin has been a good option to help clear them and so has N-A-C and glutathione.

    I hope all these vegetables help the process. I'm thinking that giving my mitochondria some energy wouldn't hurt.
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    331
    Southern USA
  9. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    Thanks,

    Good to know. I really need to look at these sometime. I've only played around with cilantro and spirulina

    hope the veggies work for you.

    I'm still trying to determine how much meat I need and can digest. I was feeling wiped out until I ate
    some lamb this afternoon. I'm soooo over being too tired to think ..

    It's cruel that we got an illness that requires so much from patients.

    Tc .. X
  10. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    Looks good .. Thanks .. I'll try this. I've been eating dulse for a few years now and I actually like it straight from
    the bag. Wakame is good straight too ..

    Oh .. Congratulations on your improvement !!!

    Tc .. X
  11. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    Just checking to see how everyone's doing ...

    I seem to be making some progress. kow .. I'm off most of my sleep supplements, 5htp, melatonin and theanine. I was taking all three and now I'm down to 50 mg 5htp. I noticed that I was too sleepy during the day and I wasn't thinking clearly. I'm off the natural calm too for the same reason. So far so good. I've been able to go off these supplements before for a short period of time tho so I'm not getting too excited ...

    I didn't realize but these supplements were also making my PEM worse. My PEM is just malaise and clumsiness though. I increased my exercise to see just how much PEM I still have and was wiped out yesterday so it's still there.

    I also noticed an increase in pain which I "THINK" is from eating avocados every day. I read that these contain mostly omega 6 and I've always felt more pain when my omega 6 was greater than my omega 3.
    So, I'm working on getting my omega 3's back up and cutting back on avocados.

    Hope everyone is doing well ... tc ... x
  12. Sasha

    Sasha Fine, thank you

    Messages:
    8,158
    Likes:
    7,042
    UK
    Hi x - great that you are making progress! Hope it continues!

    Thanks for that info about avocados and Omega 6. I didn't know that. I read somewhere that PWME have levels of Omega 6 that are too high compared to Omega 3 and shouldn't supplement with Omega 6 (can't remember where I read that, sorry). I will steer clear of avocados!
  13. madietodd

    madietodd Senior Member

    Messages:
    2,462
    Likes:
    1,708
    East Coast, USA
    I'm in, but I'm a total cheater. I started up again about a week ago, and I'm juicing 700-900 grams, plus eating seaweed and taking chlorella at night. Sometimes I'll eat some of the vegetables, but not often.

    I'm sleeping more deeply, and had 3 nights in a row of only waking once.

    I figure this is a long-term commitment to produce major healing, but I noticed Dr. Wahls said she feels worse when she eats badly 2 days in a row. Which implies that some improvement is immediate.

    Madie
  14. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    Hi; I am still in, but have backed off a bit due to the rise in TSH previously reported, so I am taking a bit less of those dark green veg, and beets, though still quite a bit, and have reduced my kelp tablet intake to around 300mcg of iodine. Still making bone broth from time to time, and keeping up those sulfur bearing veg--broccoli, onion, etc. Still lots of coloured berries..love them.

    So far a bit up and down, but more up than down; I do notice better sleep (like others, I am now taking just 50mg 5-HTP, 1 mg Melatonin, and I herbal mix with valerian, passion flower, etc. Now sleeping usually something like 11-4 or 5, then reduced level sleep till 6-7. ) Exercise tolerance slowly improving--when I trigger PEM, it is of reduced intensity and duration, and the high BP spikes that used to accompany it are now much lower--say 140 instead of 190. OI also a bit less intense--I still feel it waiting in a check-out line, but not to the near panic level I used to experience.

    I am also now using a Fiji Sunlamp to raise Vit D and also to interact with the nitrates/nitrites in the dark greens and beets--a story that does not seem reflected in TW's book, including the large biblio, but which can be checked out on the AOR website, www.aor.ca , nicely laid out in the latest ed of their magazine. Worth reading....and helps to explain part of why those dark greens and beets are as bioactive as it seems they are.

    Overall, still a very long way to go, but feeling a qualified optimism that I may get at least part of the way. Best, Chris
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,052
    Likes:
    3,222
    N. California
    I've had so many setbacks lately, due to infections, stomach flu, too much of the wrong supplements, etc... that I can't see much difference in my status. I have been keeping to the basics of the TW diet, but a couple times I cheated on goat yogurt, and also I indulged in quite a bit of my birthday cake--all organic, gluten free carrot cake with apricot/goat cheese frosting. YUM!

    I am definitely not as heavy on the greens as originally. I was not feeling well eating them in the massive amounts required. And also I need to rotate my foods a bit, or my body rebels. Given all this, I think it's going to take a while for me to see noticeable results.
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    Hi sasha,

    Thanks .. I'm hesitant to get too excited seeing as how I've felt better from other treatments and it didn't last. Although overall, I'd have to say that dietary changes have helped me more than anything. This time I think it's all those greens. I never realized that I'd gotten so heavily into eating meat when I went Paleo a few years ago.

    Instead of giving up avocados, how about just increasing omega 3 ? Avocados have some really good nutrients ...

    BTW .. are you still doing this ? x
  17. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    Hi Madie,

    That's so funny that you're a cheater. I am too ... lol ... It's taken me years to get control over my eating. I'm actually enjoying the taste of these foods more than my old sad foods or those gf foods.

    I can relate to Dr. Wahls comment on feeling bad if she doesn't eat well for 2 days. Except that I feel bad within a few hours. I notice an improvement in my energy from eating a salad with some meat.

    Do you notice a difference with your juicing ? Chorella ? or seaweed ? I'm using spirulina everyday now but can't say whether or not it's helped me. Although, this is the first time I've been able to use it without feeling horrible.

    Its great that you're sleeping more deeply. Any ideas why ? tc ... x
  18. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    Hi Chris,

    Good to hear that you're hanging in there too. I'm not up on TSH and how foods affect these. I have Hashimotos and know that I feel bad from brocolli, cabbage and brussel sprouts but I never looked at how my TSH was affected. So why are you limitting leafy greens and beets ?

    That's great that you're sleeping better and that your OI is lessened ... You mentioned panic but have you had a tilt table test ? The floor used to sway under my feet when I stood in line but that disappeared about the same time my ataxia did in 2006, so maybe it was more like this.

    I may have an improvement in my OI too but I can't be sure. I don't have orthostatic hypotension (bp dropping 20 pts after 3 minutes of standing) anymore, KOW, but I don't know when this stopped or if this has been happening spuradically for the last 22 years. I first noticed this 2 weeks ago. I still have POTS tho. My hr jumps 30 pts after I'm up for 10 minutes. I just tested this today to be sure ... I noticed that I was feeling stronger when I was upright so I checked this 2 weeks ago but I can't say for sure it's connected. I've also treated for h pylori, parasites and started some new supplements.

    I looked at that website for nitrate info but couldn't find it. FWIW tho, I'm not into researching so much anymore. I found so much conflicting info on chemicals that I just got burned out. I've been on the web since 2005 tho so I'm due a break ...

    Good luck with this and please keep us updated ... tc ... x
  19. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,818
    Likes:
    1,480
    Florida
    HI Dreambirdie,

    Sorry to hear about the setbacks. I totally understand. Hope you're feeling better. FWIW, I'd have eaten the cake too. yum ... Have you tried Almande yogurt ? It has rice starch in it but I'm using it anyways. I just got over h pylori so I have to have some probiotics and at least I know these are alive.

    I had to cut back on quantity too. BUT, I'm sticking eating as many leafy greens as I can. Kale and parsley are high in nutrients so I eat those a lot. I do better too if I keep a wide variety in my salads. For some reason, veggies are more palatable to me if I mix them.

    With our illness, it's a real struggle to get through the day much less take on this kind of project. In fact, I read where Dr. Wahls wouldn't have taken us into her clinical trial due to our brain fog and inability to keep up with the regime. LOL ... What I wouldn't give for a maid and a chef ...

    tc ... x

    Grrrr ... My internet keeps logging me off this site. I hate wireless ...
  20. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    331
    Southern USA
    Have you all tried Annie Chun's roasted seaweed snacks? I don't know if I wrote about them before. We eat them every day. It is hard to eat sea veggies daily without them. We ate Sushi today, but don't everyday of course. Miso soup is great too.

    We eat avacado's ALL the time, we live in Texas!!! Guacamole! LOVE them. I have had no problem with them.

See more popular forum discussions.

Share This Page