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thleensd last won the day on October 21 2013

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About thleensd

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  1. So, I stopped all of the supplements and remedies after having severe numbness in the right side of my body for days. It took about 5 days off of everything for it to go away. I will continue to see her for body adjustments since I've had FANTASTIC results from that. I'll need to do some more personal research to decide which supplements I'd like to try again.


    Meanwhile, I'm looking into expanding my nutrient rich diet. (I just posted about the Wahls Protocol - check it out!)

  2. I've enjoyed reading all of your thoughts. Some really weird shifts happening in my body now... Some good, some not so good. Cutting doses in half. People have been telling me I look really good, so that's a nice change.

    The numbness/neuropathy I've been dealing with lately has been the most disconcerting. MD's just want to run another MRI. The body is a pretty crazy "machine". I do enjoy learning how it all works. Too bad I'm not getting paid for that. ;-)

  3. Hey Irish! Nice to hear from you. :)

    Glad to hear you're doing a bit better.

    Yeah, I've read all of that about the live blood tests, etc.

    It's frustrating, because I really like the other stuff this lady is doing (body work, supplements, nutrition, appropriate exercise program). I told her up front I didn't believe in the stuff. Ha. I wonder if she'll work with me on my terms... Like let me pick and choose the part of treatment I want. It's just hard to know which parts to trust when she's done such a good job with half of the treatment, but lives in looney land part of the time.

    I still think she's more sane than at least 90% of the MDs I've seen. o.O

    There are some AMAZING controversies in the chronic fatigue community. But, so many people have been through similar journeys (Many doctors, "it's all in your head").

    By the way, while I'm obviously far from better, I am now working 2-3 hrs most days and prepping 80% of my own food, driving, AND from time to time am able to put in full long day of activity (as long as I can prepare/recover). Trying to have balance and not over-do (too often!).

  4. Pressure urticaria is a real thing! But.... as your body heals, it may lessen as well. Inappropriate histamine responses = hives. This may be a long shot, but you may want to look up histamine intolerance - cutting back (not necessarily eliminating) certain foods may help.


    Or your immune system is still just freaking out a bit. Hang in there, and keep the heavy bags off of your wrists. Take the offer of "need some help to your car?"... the bagger kid could probably use a walk anyway.

  5. I haven't been on for a while, but I wanted to throw a topic out and hear your thoughts.


    I am, in general, a rationalist. I believe in science and evidence - but I also know there are things we don't understand yet and I'm open to that. For example, I feel better after acupuncture. I don't know that it's for the same reasons my acupuncturist says it is... but it seems to work, so I go sometimes. I don't want to bring religion or politics in to the discussion, but lets just say I require supporting evidence. 


    I have come to distrust most MDs. I've had terrible experience upon terrible experience with doctors who know less about my conditions (Celiac, complex migraine, others) than I do. I have been in the driver's seat with my doc, doing the research myself and asking for tests. It's been working, but I've hit a health plateau. 


    After a year on the GAPS diet, I'm much better... but still no where near 100%. My condition has now been dubbed Chronic Fatigue Syndrome. I have debilitating fatigue, and neuro symptoms have increased. It does not appear to be MS or Lupus or Fibro (but lots of overlapping symptoms at this point). I've had MRIs, blood work, thyroid...all the tests that are recommended. Only abnormalities: low iron/ferratin (old problem) and *slightly* low on one of the white blood cell types. Vit D is "normal", but low for where I want it. 


    One of my friends had an amazing experience healing with a Doctor of Osteopathy about an hour away. I got on the waiting list, and have now seen her 3 times. 


    The good things: 


    -She has re-aligned by body and cured 85% of the physical issues (pain, mobility) that I've been working with physical therapists and chiropractors for years

    -She seems to really "get" the gut thing and has me on a slightly modified version of GAPS. Still grain-free, big on probiotics. I trust her nutrition and diet advice. It is aligned with what I've read and experienced. Although I get to eat a potato once in a while now. YAY.

    -She has me on some natural supplements that have increased my energy slightly. 

    -She seems very optimistic that I can recover 100%


    The sketchy things that really make my eyes cross (and the reason for my post):


    -She did live blood testing - which I found truly fascinating. I loved being able to see my cells and other *stuff* in my blood. However - quack watch and other sites say it's BS. She pointed to some groupings of cells that did NOT look like the lovely red blood cells or goofy white cells you see in pictures and told me I have "mycoplasma". I've spent some time researching that and have mixed feelings. 

    -She used this other crazy machine (even she admitted it was crazy sounding)  - EAV testing. Also huge red flags/quackery on quack watch. BUT - the machine flipped out in two specific places and I don't have an answer for that. She let me play with it a little and answered the questions I hurled at her.

    -She uses homeopathic remedies - I just started taking them. I DON'T BELIEVE they will work. But I'm taking them anyway (!!!) because: 1)  my friend got better under the care of this doc 2) no negative side effects that I know of (unlike most pharmaceuticals - I've had awful experiences) 3) I have no idea what the #*!! else to try. At this point, I'm ready to hike a volcano, burn effigies, witchcraft, voodoo, medicine man, pray to every god created...because I don't know what else to do! I've spent THOUSANDS of hours researching and trying to get healthy. I will not give up.


    A note about these specific homeopathic remedies. They are low (?) dilutions - some have been diluted to only 1:100 or 1:1000 .... so it's not like the grain of salt in a swimming pool that some are.




    -She also said she thinks I have Coxsackie virus (that is chronic/never cleared). When I first got sick pre-diagnosis, I had a nasty illness that hit me hard. I missed a month of work. It wouldn't surprise me if there was SOMETHING like that wrong with me (the way Lyme Disease or Epstein-Barr hits some). No one has been able to figure it out.


    Thoughts? Anyone have any GOOD experiences with alternative/complementary medicine/doctors? I'm sure some of you will want to wave your BS flag - and that's fine, too... but I would love to hear if anyone has positive stories. 

    Thanks for reading this far! =)

  6. *Eh. I put this in the wrong place. Guess I forgot how to use the board. Should probably be in the "coping" section.*


    I haven't been on the board for a long time...maybe a year. Looking for some support, I guess.


    It's been four years since I was diagnosed, and I'm still not doing all that well. I've pretty much given up on my mainstream doctors...it's just frustrating every time I go. I've been on the GAPS diet for one year. It has helped, I've been able to do more, but I can still only work a few hours each day, and my body is still doing some whacky things. Mostly, it's the fatigue that gets me down. That, and I have some chronic pains that haven't gone away yet. Lots of other typical things you read about from us non-standard symptoms people. 


    Anyway, I've made an appointment to see a D.O. ...out of pocket - she doesn't take insurance, and she's not cheap. They booked me SIX MONTHS ago. She really helped out a friend of mine, so I'm hoping for a similar experience. She's an hour away - not terrible, but will definitely take a chunk out of my day and energy to get there.


    ...I'm trying not to put all of my eggs in one basket, but in all honesty, I'm going to be distraught if she doesn't have any new ideas for me. 


    I'm nervous, excited and my usual insomnia is even worse. I've had a support system here to help me, but circumstances have changed, and I'm feeling quite alone. There are people around... but you know how it is - you can only talk about your health so much. I am already the first to leave at social events, and I don't want to be Debbie Downer or be getting *that* kind of attention.


    So, yeah. Wish me luck. Trying to keep my chin up no matter what.

  7. I know this is a few months old, but I'm looking through to see other people's histamine comments.

    Years ago I was diagnosed with "chronic idiopathic urticaria and angioedema" (hives and swelling - unknown reason). I also had dermagraphia... The swelling was actually a delayed pressure reaction. Look up pressure urticaria. It is well-known.

    From what I can tell, if your body is in a place where histamine is overactive, this is one of the possible reactions. Not in your head at all! =)

    I'm trying to find info on healthy gut bacteria and histamine... that's the research road I'm going down. It seems a healthy, balanced gut will fix so many things! Now...... how to get there!?!


  8. What a great conversation. It's nice to have people to relate to! So many "atypical" issues here that are simply "just" Celiac. I feel like I'm always looking for more answers to fix my fatigue, aches, brain fog... I will continue to do so, but more than likely what I need is time-time to eat good, nutrious food. Time to rest. Time to understand my body and know that "more exercise to get in shape" isn't always the right answer! Some days I can only walk a few minutes at a time. Others more than an hour!

    Last night I was teaching/directing my Tuesday night music group (adults)... There was a point in time (happens periodically!) when I just couldn't make my mouth say what my brain wanted it to! Fortunately, they've seen it before and we can generally just laugh about it. It's like oral ataxia...my tongue and lips just can't quite get their balance. :) (yes, I just made that up!) It's funny because most of them are at least twice my age, yet we have many of the same body-is-betraying-me type of experiences. In my case, however, I'm VERY hopeful that it is a temporary condition. What a painstakingly slow process recovery is for some of us!

    And on that thought... Never ask the universe for patience. It just may give you the "opportunity" to develop it.


  9. In short, two questions: what tests should I ask my doctor to run to test for Hashi's? Is it possible to have "normal" TSH, T3, T4 and still have it?

    Longer version if you have time to read: In 2005 I was diagnosed with chronic idiopathic urticaria (hives) and angioedema (swelling). I spent a hellish year on heavy antihistamines (don't remember much from that year!) I was able to taper off and the hives didn't come back except for a two or three strays. A couple times I'd get a hive on my eyelid, but only in the next couple of years.

    Fast forward to Celiac Diagnosis 2009. Three years later I'm still very fatigued (a bit better, but not well enough to fuction independently). My body temp is often low, I'm underweight although I eat a lot. Most of the heavy anxiety I experienced just before dx has gone away with gluten-free, but I still have stray anxiety when I'm in need of food or during PMS. Tonight I had eaten and it's not that time hormonally when my eyelid started to itch pretty badly. It made me anxious (adrenaline) and I got up to look. I had a hive! Just one-like in years past (chronic urticaria tends to strike eyelids and lips most, and it's not an allergic reaction, but an autoimmune one). So, I'm a little freaked out because I don't want to go back to that issue.

    I spent a lot of time researching chronic idiopathic urticaria in '05, but seven years is a long time in the current autoimmune world, so I thought I'd look it up again. Tonight when I looked, two of the first three hits said that many people with chronic urticaria have autoimmune thyroid issues. By many I mean 30-40%. That's pretty huge.

    I'm currently on GAPS diet (grain free, etc), and have tested for food allergies (98-skin prick) and have none (although there seem to be a few foods I can't handle for other reasons. I'm fairly certain my eye hive wasn't a food or environmental allergy. If you've dealt with chronic hives you'll know what I mean. I've also started reading about histamine intolerance. Fascinating.

    Thoughts? At least I hope to get my questions on Hashi's answered.

  10. I'll definitely have my folate checked next time I go in for blood work. Last time it was >20 and "normal" is listed as > 5.35 ...which doesn't really make much sense. What's with the >? The way I read that is mine was greater than 20, which is high (standard reference range I found online went to 17, so it's not absurdly high). I'm not taking that vitamin anymore anyway - may have been over-supplementing at the time. That was many months ago, though.

    My doc did say she'd keep testing things if we can think of things to test, so ...anything else I may have missed?

    Of course, I'm going to have to (attempt to) qualify for new insurance soon...so I may wait until then.

  11. Yeah, I've looked into other foods. I found that I do better with no grains. I'm on the GAPS diet, which among other things is grain-free and soy-free. I've tested against nightshades, fructose, dairy and a bunch of other things. I eat only whole, unprocessed foods, organic when possible. I can't afford to eat all organic meat - I'm on a high calorie diet - but chicken and broth is all organic.

  12. Thanks for all of your thoughts. It's definitely not low B12 (mine is over 900) and it isn't hemochromatosis (have checked iron labs carefully) unless there is something about it I don't know. My saturation has generally been on the low side.

    >>>As for what you can do with your time? Well, if you have any hobbies that can keep your hands busy that you can handle they can be a good option.>>>

    I do have a couple of good hobbies which give me some good positive things to focus on as well as some social life. I guess my biggest trouble is knowing how hard to push and when vs. when to back off and relax. I know I'm making progress, there was a time I couldn't raise my arms to wash my hair and now I can go for 20 minute walks many days.... It is difficult for my friends to understand why I just can't exercise more to have more stamina like they can! Not to mention that I'm underweight and have to choose where to expend my energy!

    Anyway...I'll keep looking for answers... Patience has never been my strong suit. ;)

  13. Thanks for the sympathies. I'm still hoping there will be a way to crawl out of this hole.

    Isn't chronic fatigue syndrome considered a diagnosis based on excluding everything else they can come up with to test? Please correct me if I'm wrong. There seems to also be a variety of theories on the best treatment for it.

  14. Hi all,

    I haven't been to the forum for a while, so a quick recap: Got really ill (downhill for years, then acutely), misdiagnosed terribly for who knows how long, finally diagnosed February '09. I had a ton of non-GI issues, the longest lasting seems to be fatigue. The brain-fog, neuro, and balance issues have gotten much, much better since first going grain-free, and now I'm on GAPS diet.

    It's been 3 years. I still am not well enough to have a steady job or even really take care of myself. I need constant food (eating many more calories than "needed" for my weight), I'm underweight, have to be careful with how much energy I expend - that is for many reasons. 1-My weight drops if I do too much (I eat as often as I can!). 2-I fatigue easily. Not as bad as before, but still pretty bad. I'm sure my grandmother has more stamina than I, and she's 92 (of course, she rocks, but that's another story!). 3-If I over-exert myself, it's a multi-day recovery.

    I think I eat very well (lots of organics, ALL home-prepared foods), and take care of myself physically/mentally as well as I can.

    At this point, I just don't know if there is anything else proactive I can do, or if I just have to keep doing what I'm doing!

    Blood work is all good, with the exception of iron that I have a hard time keeping up to a reasonable level. I have kind of heavy periods, but am unable to take any sort of birth control/hormones to regulate it. I am super sensitive to EVERYTHING. I haven't even taken as much as an advil in six months (they rip up my stomach and make me sleepy).

    My doctors don't know what else to test...and frankly, I'm in a place where I'm going to need to apply for insurance soon, so I don't want to get "pre-existing condition" tagged.

    Mostly I'm ranting and venting, but maybe I can come up with some questions that you experienced, helpful people can answer.

    -Does a Celiac Dx create problems for getting health insurance?

    -What else can I ask my doc to test for? They've tested thyroid, and a bunch of other "standard" blood work. In my initial diagnostic journey, they tested liver, heart, brain CT scan, MRIs, x-rays, pancreas, ...pretty much haven't found anything other than Celiac that is "clinically" wrong....although there were some indicators they missed along the way.

    -I'm learning to live a slower life, but I'm going kind of stir-crazy. Trying to start a home-based business I can do part time when I'm able...but I don't know how hard to push myself. It's not like I can exercise and just push through it and be better. I try to walk regularly (about 20 minutes average...some days only 5-6, others I can go for close to an hour). I don't have money to do anything...just scraping by as it is...so, I guess I don't know what to do with my time! I find that when I'm physically tired (a majority of the time), I don't have mental energy either, so reading, writing, etc aren't effective/fun/productive. So, I guess my question here is, for those of you who have dealt with extreme fatigue, how do you structure your time so you don't feel like a total couch potato? I tend to start projects when I have energy, but then get fatigued for many days and either lose interest or momentum.

    Would love to hear your thoughts!

  15. What kinds of foods are you eating? Just because it is gluten-free doesn't mean it's best for you.

    I didn't turn the corner to feeling better until I started eating only unprocessed foods, then went grain-free/paleo. Now I'm on the GAPS diet which is quite similar to paleo.

    As you'll see reading this forum, there are many people with secondary intolerances as well. Maybe start a food journal to track how you're feeling when you eat certain foods (although this is tough, because there are delayed reactions).

    Good luck!

  16. Those of you that had to deal with the annual figuring out how you're going to handle food for Christmas/Hannukah/Solstice/etc, how did it go this year?

    My family is awesome. They were very careful with the food this year. Wasn't a gourmet masterpiece, but it was certainly adequate to celebrate. At the actual meal, the subject of what I can/can't eat was only brought up once, but then quickly dropped.

    I did have one break down in the afternoon for a couple hours that was either from not eating enough/soon enough OR possibly a little CC off of a gluteny kid. Not sure about that one.

    How 'bout you??

  17. You certainly have a right to feel bad about this! People often don't think of how much their words can hurt - even when they are the ones that are closest to us.

    Please have a talk with your parents (not at mealtime when everyone is hungry or irritable) at a time when your dad seems in a mood to receive what you have to say. Explain very matter of factly why your feelings were hurt when he said what he did. Explain that you know it is hard for them, it's hard for you too. Maybe he need to hear a little bit more about Celiac disease or spend some time on the "friends and family" sections of this website.

    Also, since I imagine you'll be on your own in not too long, take the opportunity to learn to cook more things that YOU like. Then, even if dad is being selfish, you can have some great food, and when you get out on your own, you'll know what to do.