One year of Methylation... Journal 3

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by lbconstable, Apr 2, 2008.

  1. deliarose

    deliarose New Member

    Well, that put me in my place.

    You are light years ahead of me, at every level when it comes to managing this illness, strategically, philosophically...yatta.yatta. "nuf said.

    I kind of marvel that you can work, but I think I've fallen into that trap...where I've got even more dysfunctional by
    NOT working, even though the way I was working before I quit my job was making me SICKER.

    There are no simple answers.

    I saw a neuropsych today to get an evaluation and I am pretty sure I tested even worse than 2 years ago. Very sobering.

    Tried to do a Vit C flush yesterday or wot I thought was a flush. Basically took about 10 Grams of Teh Right C (not ascorbic acid). It did not induce soft stools.. or a BM so that suggests my body was able to use it? to recycle glutathione I hope.

    I am wondering if I have screwed up by not taking Vit C to bowel tolerance all this time?

    d.
  2. Forebearance

    Forebearance Member

    Oh, I'm so sorry to hear about what happened to you, Elisabeth. It sounded really scary. My thoughts are with you.

    Love, Forebearance
    [This Message was Edited on 04/24/2008]
  3. lbconstable

    lbconstable New Member

    Hi d-
    I don't think I'm light years ahead of you at all! I really appreciate you bringing the "rest" subject up. It gave me a chance to reflect on the multitude of choices we each make in an effort to manage CFS/ME/FM.

    I've learned a lot from you. I've really appreciated traveling the methylation leg of this journey with you. It seems like our detox symptoms are often similar.

    The other thing to know is that I am in a very, very rare and fortunate position with my job. There is not a lot of new talent entering into my field. I have almost 20 years of experience. I bring something to the table that my employer cannot readily find elsewhere - so they deal with my health issues in exchange for my experience. I've been around long enough that I can get a lot done by phone and by email. So I have that to fall back on when I'm just too fatigued to get out into the world.

    You're right, there are no simple answers!

    What is a neuropsych? What testing do they do?

    I have a sinus infection that's driving me crazy! I have a prescription for a sulfa abx. I've been trying to avoid taking it. First off because of the sulfur issue and second off because I feel like my gut is doing so much better - I don't want to stress that system again. I think I'll try to steam it right now. Any thoughts are welcome!

    Love & Light all, Laurie
  4. deliarose

    deliarose New Member

    Actually, the guy was a psychologist. He does neuropsych testing. Standardised testing to evaluate cognitive function.

    I need it for insurance reasons, although I suppose it's also a tool for tracking cognitive dysfunction.

    Usually shows I have tons of trouble with any mental task that has more than one component.

    The guy is Frank Levitt. He works with Dr. Robert Katz who is affiliated with Rush University, Chicago.

    Katz sees a lot of fibro patients, and he and Levitt were doing some study on fibro fog.

    The treatment seems to be the usual.. stimulants.. which are useless in my personal experience.

    I wasn't impressed with him or Katz, although Katz is clearly a nice man. He just has nothing to offer beyond the usual pharmaceuticals & I've been there, done that.

    Also, Katz has the most swanky office of any doc I have ever seen so clearly he is making a lot of $$$..but that's not a crime right?

    d.

    d.
  5. deliarose

    deliarose New Member

    Netti pot?

    Not sure what to put in it.

    LisaP is big on colloidal silver for sinus infections if memory serves...but don't think yasko is.

    helpful, right?
  6. deliarose

    deliarose New Member

    Netti pot?

    Not sure what to put in it.

    LisaP is big on colloidal silver for sinus infections if memory serves...but don't think yasko is.

    helpful, right?
  7. lbconstable

    lbconstable New Member

    Hi All...

    I just reread all of your messages on this thread. I really appreciate all of your warm thoughts and wishes! Sorry I haven't responded to all of you directly. Just want you to know that you're all appreciated.

    I haven't updated in awhile for a few reasons. I am sort of veering off the methylation path and haven't really known what the new path will be looking like. I can't believe a few months ago I committed myself to two more years of this protocol and now I'm changing course a bit.

    I previously posted about my appt with a local nurse practitioner to go over my hormone panel ordered by Dr. Mullan. She gave me inputs on the hormone stuff. We adjusted my progesterone dosage and it seems to be the right move. We also confirmed that the excess testosterone was contamination from my husbands supplementation. Aside from all of that she recommended that I see a medical intuitive that she has worked with.

    I was feeling at a crossroads with the methylation plan. I was going to have to make some adjustments with the supplements and avoid the urine testing because of finances. So I agreed to see the medical intuitive (Jennifer Kaye Dickinson).

    So at the risk of appearing really "out there," I'll report what I've done the last few weeks and where I see myself headed...

    I have had three appointments with Jennifer (the intuitive). She has talked to me about my physical symptoms and about emotional events and fears linked to that manifestation. I found all of the conversation remarkably accurate and helpful. I'm going to stick to the physical stuff in an effort to keep my report as concrete as possible.

    She accurately defined my symptoms without prompting or information from me. She identified inflammation in my gut as the root of my current symptoms. And chronic constipation as an adolescent as the physical health issue triggering ME/CFS/FM. Once she identified my gut as the organ to target, we had a follow up appt to determine which foods are suitable and which are not suitable for me. Today we had our third appt to go over the multitude of supplements I have been taking.

    I have felt remarkably well for the last 3+ weeks. Brain fog is completely gone. I'm certainly tired at times, but as Delia pointed out, I should be. It feels like a normal tired, as oppossed to a slogging through mud, overwheming fatigue. Once again I notice a remarkable difference in my skin - it is compellingly soft to touch.

    I have made some dietary adjustments that seem to be helping the whole family. I will be paring my supplements back tremendously. Here is my supplement plan: Probiotics, Digestive Enzymes, Folapro, Intrinsi B12, Magnesium malate, Magnesium Citrate w/Calcium, Vitamin C, Omegas, ATP, sublingual B12, vitamin K, Theramood patches, BCAA's, Cell Food, HHC multivitamin (until finished and then will probably look for a different multi). I may continue with Vitamin D, Niacinamide (at a lower dose), and a new source of molybdenum (she was not keen on the elyte formulation of molybdenum or selenium). I may add NADH back in too. I have been out and have not reordered for awhile.

    I will also be looking into Tai Chi or Chi Gong...

    Delia, I have been "put in my place" so to speak with regards to the need for rest comment. While I am employing management techniques that are getting me and my family through the day... I have been asked to evaluate whether my current committment level is really bringing peace to my home and happiness within my being. This question/observation has been illucidated from several sources recently. I don't know yet, what adjusments we as a family will be making. But it's clear that my family and my body will benefit from a reevaluation of committments.

    Sorry so long!

    Warmly,
    Laurie

  8. deliarose

    deliarose New Member

    This is interesting. Do you feel that the yasko protocol was not addressing all your issues? Or do u feel you plateaued?

    Did you get fed up taking the huge amount of supplements?

    Also, if she thinks the gut is your issue, does she recommend a CSA?

    Pls keep us updated as you can on your progress. I guess this woman is taking a more holistic approach.. .lifestyle and supps/medicines.

    best
    delia




  9. lbconstable

    lbconstable New Member

    Hi Delia,

    No, I wasn't really frustrated with the protocol or looking to change my direction. I had fully intended to plug away at it for another couple of years. I was evaluating what level of supplementation that I could financially sustain until next winter, though. A big portion of our finances come in between December and April. But I had intended to continue with the full protocol at some undetermined level.

    I really only went to see my nurse practitioner to go over the hormone panel that Dr. Mullan had ordered. I was comfortable with plugging away with Yasko. But I had been quite fatigued for awhile. I had in the back of my mind that it was time to run a CSA when I felt I could afford it, but wasn't sure if I'd run that thru Mullan or my NP.

    I think it was just something about the way my nurse practitioner advised that the medical intuitive could help. My nurse practitioner has recommended outside help before and sometimes I've followed her recommendations and sometimes I haven't. I don't really know why I followed through this time. I think I just made the phone call out of fear that I would forget to do it and her brochure would just end up buried in my endless piles of papers!

    While I'm interested and open to the intuitive stuff, I still feel more comfortable with concrete evidence and concrete theories (even if they are unproven). So It's a bit out of character for me to make an 180 degree change like this. I was just blown away with the accuracy of our first meeting. And the level of well being that I felt afterwards.

    I hadn't minded taking all of the gazillion supplements, but after my last session with the intuitive, which we cut my supplements by 75%, I felt a huge relief. The next morning the first thing I did was throw out my whole stack of Yasko info that I had printed out. It felt like a breath of freedom. And I realized that the intensity of the protocol was not a good thing for me.

    So it's been four weeks, since my first appt. and I feel really great. I've also given up coffee enemas! Isn't that a miracle?!!! Honestly, brain fog is gone! I wouldn't say I have a lot of stamina, but I'm not slogging through mud fatigued.

    Rivka mentioned that your appt with Mullan wasn't entirely positive. Sorry to hear that. Are you following her supplement recommendations?

    Love & Light,
    Laurie
    [This Message was Edited on 05/15/2008]
  10. Diva55

    Diva55 New Member

    Hi Laurie
    I have of course been following your thread.

    It's very interesting about the medical intuitive & I'm glad you're feeling comfortable with her.

    Not being a Ra-Ra for Yasko or Rich but I wonder if the protocol re-started your system enough that you could go back to a simpler status with regards to the supplements.

    I've had to stop & re-start so many times with the simplified protool due to other health problems (I really won't bore you with those) but they have nothing to do with the protocol.

    However, at the moment despite my health issues I'm feeling quite well in a weird way! I have more energy per day, sleep deeper & can sort out some paperwork as well as doing a few chores. I've even been able to do some gardening (painting fences as well) and not crash afterwards.

    I know I contribute this to the protocol as nothing else has changed with what I do or eat. I know some people will say I'm having a period of remission but previous remission periods didn't feel like this.

    With your current list of supps it seems that they are almost like the simplified protocol & many match what I would normally take when on the protocol. You have a few additions I don't take & you don't take the Phos. Serine but it's quite a match.

    I'm really pleased you are happy with this woman which makes such a difference to your health - someone you can emphathise with & have confidence in.

    This really is great news. May you continue to improve & gain back full health.

    I do hope you continue to post.

    Best wishes
  11. lbconstable

    lbconstable New Member

    Hi Diva,

    Thank you for you warm wishes!

    I believe that the Rich/Yasko approach has helped me a great deal and I'm now ready for a maintenance program as a result of the MCB protocol. I did want to keep most of Rich's basic 5 onboard. I will take the phos serine when I feel I need a 'pick me up.' And I'll replace the HHC multi with Thorne's detox multi. I've taken the Thorne product in the past and been really happy with it. The intuit said that I wasn't deriving the full benefit out of the HHC because I couldn't adequately digest it, unless I ground it up.

    I'm thrilled to hear you're feeling a bit of wellness! Sorry to hear about the additiional health issues. As if we don't have to deal with enough with the ME/CFS! Isn't just a simple blessing to be able to sleep?!

    May you continue to improve and reach deeper and deeper levels of wellness!

    Warmly, Laurie
  12. lbconstable

    lbconstable New Member

    Hi everybody!

    Boy have I been remiss in posting!

    About four weeks ago I had one day of collapse. My husband remarked that it was the worst he had seen me in a while. One of my customers asked me if I was well and I told her that I have FM, as it turns out her mother has FM. It's been a long time since an acquaintance has asked if I'm not well. But the worst of it only lasted a day and then I sort of felt like I had a "fatigue" hangover for a few days.

    But since then I have been doing remarkably well. I have been back to 100% functioning. I have been on the go from 8:00 a.m. to 8:00 p.m. It couldn't come at a better time, my family and our finances both need my cognitive and physical attention.

    Maybe it's the weather. I do a lot better when the weather is nice. But I think it's more.

    I have given my diet a renewed committment. No: milk products (except boursin), no gluten, no soy, no root vegies, limited beans. This has eliminated the mucus I was having in my stool. Just a note: my diet has been excellent for several years now. Any "normal" person would have considered my diet extraordinary. I have been "treating" myself to one alcoholic beverage a night, but have discontinued that for now too.

    I eat protein with vegies only and eat carbs with vegies only. No protein & carbs together. I eat protein before 2:00 p.m. and carbs after 2:00 p.m. This change has improved my already pretty good sleep pattern.

    I haven't been good about taking the supplements that I want to stay on. I've been too distracted with working, family, etc. At some point I will get back on that horse.

    Here's a novel idea that I think is helping greatly: swinging in a hammock from head to toe. So I lay perpendicular in the hammock and swing. This was a recommendation from an Occupational Therapist for my younger daughter. She suggested that I could get in the hammock and swing with her. As it turns out, it felt really good for me. I am noticing a decrease in sensory overload, more even temperament, less irritability and less tendency to overwhelm. I'm trying to do it now for 5 minutes everyday.

    I think this sensory exercise is a really big piece for me. I'm amazed at the difference sensory exercises have made for both me and my daughters.

    On a more personal note. My husband and I have been farming cut flowers for 8 years now. We are in the process of transitioning to organic vegetable production. We are very excited about the possibilities of our new venture. I worked most of Saturday and Sunday down at the farm. It felt really good! I haven't been able to work like this in sooooo long. My body is a bit sore, especially my hips. I think a bit of yoga is in order. Hopefully that will help get things stretched out a bit. It feels so good to be out there though!

    We are just starting to harvest the first vegetables. We are really short of cash, so good thing the harvest is beginning. There is so much to do though in developing a new market and just physically getting everything harvested.

    So that's my two cent update.
    Laurie
  13. deliarose

    deliarose New Member

    Good to hear from you. It sounds like you're in a really good place. I guess all that hard work paid off.

    The diet is so important. It kicks my ass all the time.

    Best
    delia
  14. Forebearance

    Forebearance Member

    Yes, it's so good to hear from you, Laurie!

    I'm so glad to hear how well you're feeling, except for that one bad day.

    I hope your new venture is a great success!

    Love,
    Forebearance
  15. lbconstable

    lbconstable New Member

    Hi Delia, Hi Forebearance,

    Good to hear from you too! Thanks for the well wishes.

    Yes, the hard work is paying off. Each post is a snapshot of where I am at any given moment. But the "movie" has been a lot of attention and investment to my health over a fifteen year period of time. The last five years being the most intense. And little by little I've improved.

    I can only speak for my own situation, but it has been a very gradual improvement. I don't think any one thing that I've done would allow me to improve to this degree.

    And the diet! Yes, it kicks my but too. I am resolved at this point that attention to my diet is an absolute must.

    I believe that the issues I've had with my adrenals and other glands are probably completely resolved. I think that my sensory exercise of swinging head to toe in a prone position, is important to relieve demand on the endocrine system. I haven't studied this aspect to a significant degree yet. But the info I'm getting from our Occupational Therapist and the results I'm seeing in myself and my children point to a very strong link to the functioning of the central nervous system.

    I also believe the Folapro and Intrinsi B12 has played a significant part in recovering of my adrenals.

    Looking forward to catching up with your progress when I get a spare second! :)

    Love & Light,
    Laurie
  16. lbconstable

    lbconstable New Member

    Oh Boy! It's been awhile since I've posted.

    I miss conversing with all of you!

    I continue to do really well. I have pretty much not been taking any supplements, except an occassional vitamin C. I keep thinking I'm going to get back into it, but seems like I have a few too many things on my plate and I just don't seem to get around to ordering and taking my supplements. I think this is a bit foolish as the commitments we've made are putting huge demands on me.

    I especially want to get regular magnesium and the B's that Rich recommends back in as a regular routine.

    Interesting note though; Last week for two or three days I took both 1/4 tab Folapro and 1/4 tab Intrinsi B. After the second day the skin of my right hand, middle knuckle started to itch and split apart. This is the same reaction I had during much of the year that I was consistently doing the protocol. I interpret it as detox.

    My whole family is continuing with the dietary guidlines separating protein intake from carbs. We eat protein before 2 p.m. and carbs after 2 p.m. It seems to be the best thing for me yet. I have been having an adult beverage every evening (which I haven't ever done in my life) and seem to be tolerating it. I'm sure it's not ideal, but for now, I'm enjoying this luxury.

    My husband and I have made a big change this year in our farming business. We are transitioning from growing flowers to growing organic produce. We provide families with a weekly basket of various organic fruits and vegetables. It started this spring as a small trial. But seems to be really taking off.

    The amazing thing is I've been down at the ranch almost every afternoon after working my "real" job. And most of the weekend too. A lot of the work is heavy work, lifting, squatting, etc. I wake up stiff and sore a lot of days. But that I can actually maintain the workload we've taken on over the last few months is amazing.

    I have some days, where I'm slow to get moving or a little slow in the cognitive skills. But I haven't had any flares. The last flare I had I reported here months ago and it lasted one day.

    Warmly!
    Laurie
  17. Waynesrhythm

    Waynesrhythm Member

    Hi Laurie,

    Just wanted to reply with a quick thanks for your updates. It actually sounds quite miraculous what you are able to accomplish these days. Congratulations! All your diligent work over the years certainly appears to be paying you some remarkable dividends.

    In your prior update, you mentioned: "I think that my sensory exercise of swinging head to toe in a prone position, is important to relieve demand on the endocrine system. I haven't studied this aspect to a significant degree yet. But the info I'm getting from our Occupational Therapist and the results I'm seeing in myself and my children point to a very strong link to the functioning of the central nervous system."

    I'm not familiar with this exercise, but am highly interested in knowing more about it. Does it have a specific name? Is it well know in Occupational therapy? If you could point me in the direction of how I may research this furher, I would appreciate it. I'm currently on a road trip and will only be able to check back periodically.

    Thanks much for anything further you can offer.

    Kind Regards, Wayne
  18. lbconstable

    lbconstable New Member

    Thanks for the note, Wayne. I feel quite blessed to be functioning at my current level. And I'm quite proud of accomplishing this level of health. Aside from the group here, lots of times I felt I was on my own in my treatment plan and decision making. And sometimes it felt as if some family members and friends thought I was nuts - well, they probably still do!

    As far as the sensory exercises, probably the best explanation can be found through a book called "The Out of Sync Child." The common terminology is Sensory Integration Dysfunction/Disorder. It's a fairly new area of study/development. I would think most any Occupational Therapist will have heard of it. But there are OT's that specialize in sensory integration. And like many of the newer treatments that I've tried, this one is a bit controversial in the more conservative circles as well.

    The exercise that is super for me is to lie in a hammock in a pependicular fasion and swing. This gives me the head to toe motion. But it's a very different experience lying down in the hammock then sitting up in a traditional swing. Afterwards (for several days) I feel much more grounded, centered, less emotionally volatile, and not prone to overstimulation from sounds, light, and movement.

    My oldest child needs a lot of vestibular input. She gets this by swinging in circles on a tire swing. And she will find all kinds of different body positions that stimulate her system in different ways. What I've learned from her treatment is that all of our senses, except smell, are processed through the vestibular (inner ear) before going to the brain.

    It's really a fascinating area of study. One of my older daughter's teachers remarked that the change in her was "remarkable."

    I'm finding it difficult to carve out the time we all need with it, but this is my primary area of interest right now.

    Hope you're well and travelling easy!
  19. Waynesrhythm

    Waynesrhythm Member

    Hi Laurie,

    Thanks so much for your reply and for providing some details on sensory integration. I will definitely be looking into this in the near future as this is a huge issue for me.

    Kind Regards, Wayne
  20. Diva55

    Diva55 New Member

    Bumping for anyone interested in the Methylation protocol