Chronic Fatigue

[Elgama]

TomK just tell me how I can even phone the US occasionally and it not cost me - PM me details

-Charley

[tomk]

Originally Posted by Elgama

TomK just tell me how I can even phone the US occasionally and it not cost me - PM me details

-Charley

Not sure what you are asking.

[Elphaba]

I swear, I hate my thyroid.

I just got labs back and discovered I have no TSH, which means my thyroid is not producing any hormones. My Free T4 was under range, which is also hypothyroidism.

Unfortunately, the doc did not do a Free T3, which surprised me, as it is actually the active thyroid hormone in your system.

I KNOW my thyroid is directly connected to my CFS and FM. I have fought doctors about this for years, but in the end, if when I found one who would work with me, nothing worked.

All of the body's hormones must be in good sync, and it is almost impossible to make this happen for some people. You are hypothyroid, you take T4, and it inhibits your adrenals. You take hydrocortisone, and it affects everythihng else.

I finally stopped hating doctors when I realized they really were doing the best they could with a disease system that is not well-understood.

I used to be hyper-thyroid--too much thyroid hormone, and drank the radiation to inhibit part of my thyroid. I have ALWAYS regretted that, as I was only minimally hyperthyroid, and believe it would have evened out as I got older, since many women with thyroid disease eventually become hypothyroid as they age.

However, I did have the treatment and afterwards, I gained 30 pounds in a few months, I had to make myself breathe, the more I exercised the weaker I got, and other classic symptoms of hypothyroidism. Yet my endocronologist said I was fine.

I was NOT fine.

Fifteen years later I asked for a copy of my labs and this doctor's note, only to discover my TSH DID indicate hypothyroidism, and he had even noted such!

AUGGGHGHGHGHHG!!!!!

So, since we were on the subject earlier, I thought I'd check in.

Robert, I enjoyed the article on Oprah's thyroid. I never watch her anymore, so was not aware of her problem.

I knew about everything he explained with the thyroid, but have never heard of the hyper . . . I don't remember the spelling, and I don't want to look it up right now. But I'll look into that some more.

It would be helpful if the doctor were less caustic. That's really distracting.

Elphaba

[Elphaba]

Originally Posted by tomk

My wife has Chronic Fatigue Syndrome.

If anyone would like to get in touch with her, I think she could really use your support. She just found out about it.

Hi Tom,

about.com's Chronic Fatigue Syndrome is an extremely good site for people with CFS, as there is a lot of support from people newly diagnosed to those who have had it for years.

I will warn you, there is SOOOO much information, it can be overwhelming to someone just diagnosed, sick, and not able to think very well.

But, if she were to spend a few minutes a day there, or lots of time with the supporters, it would make her feel less alone.

Also, you can PM me anytime and I'd be glad to talk to her.

Elphaba

[Misshalfway]

Ok....so I don't think I have Chronic Fatigue as I just spent 6 days in the hospital and may be diagnosed with Crohns Disease. Bummer cause I can't eat anything but broth for the next week! grumble grumble....as my family gets to eat the dinners from the RS.

BUT.....don't feel bad for me. I successfully smuggled out the best pair of hospital scrubs! Ya Baby!!! I am feeling a little Thelma and Louise...something that is good for the soul occasionally, don't you think?

[applepansy]

Originally Posted by Misshalfway

Ok....so I don't think I have Chronic Fatigue as I just spent 6 days in the hospital and may be diagnosed with Crohns Disease. Bummer cause I can't eat anything but broth for the next week! grumble grumble....as my family gets to eat the dinners from the RS.

BUT.....don't feel bad for me. I successfully smuggled out the best pair of hospital scrubs! Ya Baby!!! I am feeling a little Thelma and Louise...something that is good for the soul occasionally, don't you think?

Aw hun (((hugs))) At least you know what it is now. My brother has Crohn's. I could go on and on about diet and such but I won't.

Take care and again, do your research. Learn what you can do to help yourself feel better.

applepansy

[RobertP]

For Crohn's, if I can't directly recommend the SCD diet, it is something I would be aware of. Pecanbread is one site, t's Breaking the Vicious Cycle Web Site - Home is another. A search will bring up lots of info there. A lot of people seem to get better on this. I have Elaine Gotshall's book, a good read, although I never could maintain weight on that diet myself as I understood it and went off it about once a week to have some complex starches to relieve deep muscle aches and rapid weight loss. Maybe I was doing it wrong. I still learned something from it, tried to do it for 3 or 4 months. Bacillus Subtillis and S Boullardii should come to the top of the list for Crohn's, but you could read that in the book too. Jordan Reuben also healed from Crohn's disease, wrote a book and has a supplement line, seems for the whole book, the turning point was the 'dirt' he ate, which was rich in soil based organisms. I have great reason to believe that it's not hopeless at all.

Elphaba, I feel your pain. I seem like a self diagnosing nut, but really it is partly from telling doctors I didn't feel right, they take panels, tell me I'm fine. I know I'm not, or certainly wasn't at the time. I have kept the worst symptoms to a minimum with low sugar and gluten free, now the cranberry extract seems to add to the success. Without that, before I learned that, struggling for consciousness in the afternoons. No fun. If nothing was required of me, I was laying on the floor or in bed, very familiar with headrushes when I stood up. I sort of gave up on doctors for this a long time ago. Panels are fine, I'm healthy, how about an speed (time release ritalin, forget the brand name)? It makes you edgy? Well, this class of drugs may not be for you. How about an antidepressant? It won't hurt you, honest. Root cause, doctor. I need my brain my whole life, can't be letting this eat my brain while I take your meds to feel better while the problem lurks beneath. Root cause. Forget the leaves.

For thyroid, my wife has done fine on a couple of thytrophin per day, recommended by a naturopath, so not completely self diagnosed there. I like Iosol iodine and dl-phenylalanine. Tyrosine is supposed to be good, but I only feel results from dl-phenylalanine. It's a good component for thyroid, dopamine, epinephrine and norepinephrine. Of course, going gluten free somehow balanced something that takes away my need to keep taking that, feels more like a stimulant now. For actual measurements though, my wife was low thyroid and the thytrophin from Standard Process brought her back to normal range when for whatever reason, escalating dosages of synthroid seemed to keep her at the same spot, like the thyroid was determined to keep that level. Go figure. Even now though, I'm not really on task, should be studying. Hurts my brain less to do this than burn that stuff into it.

[Misshalfway]

Thank you Robert. I have been beside myself trying to figure out what is wrong with me. I still wonder if Chronic Fatigue is a player or if my hormones are just whacked. But Monday and Tuesday this week I felt so good......I mean good!! Like better than I have felt in 18 months! My mood was happier. I was weird to feel such a shift! So I was feeling like maybe the drugs were really helping and then woke up this morning feeling horrible and emotional and exhausted again. UGH. When I got this diagnosis, wow! I was just blown away and scared because I don't at this point know how serious something like that is. But I am glad to hear of resources and I am starting my reading list. I hope i can find the right doctors to help me figure out the whole puzzle. I am learning that perhaps I was really bad at the self diagnosis thing.

[Misshalfway]

Originally Posted by applepansy

Aw hun (((hugs))) At least you know what it is now. My brother has Crohn's. I could go on and on about diet and such but I won't.

Take care and again, do your research. Learn what you can do to help yourself feel better.

applepansy

Applepansy!!! You have a heart as big as Texas! And I love you.

Thank you for all your support. And I love the little mother hen in there too.

[RobertP]

OK all, I feel a little wordiness coming on, even for me. I have felt it somewhat of a disservice to not mention success I have had lately in more detail so you can see side effects of something good and see more first hand why I say what I say and see how I see. Hopefully it will seem more real and less left field after this.

First, the self diagnosis thing, it's tricky and we fail a lot, but on the other hand, the doctors didn't get it right until it was very serious. You have known for years but they couldn't pinpoint it. Now they can. It's Crohn's. But it wasn't before, just 'something' you knew about and they couldn't identify. We will now diagnose it, Crohn's disease, stare blankly while drugging it, and hoping to extend your life in comfort a little. Reactive medicine. Makes me kind of crazy, especially when what I have thought for a while finally I have found success in, makes it less theoretical. I bought products designed for a purpose. I did not make them in my home lab with knowledge only known to me that people should rightly question. We have the technology. People made this because research suggested these can help. This could have been averted, in my little world at least. But it can be greatly alleviated or cured, in my little world at least. This is another reason I want to catch 'whatever it is' in me, before a doctor can tell me its MS or equivalent bank busting life drainer.

As far as the hormones/psychological/what else could it be, let me tell you about a round of success I have had in more detail, so you can see how I am considering that it is hormonal, yes, but not fixed with hormone therapy, and physical, yes, but fixed with psychological elements. Everything seriously has been a curve ball for me, and this has worked reliably inside my family. If I am repeating, I will put more detail here so you can see how the results I have experienced have had an affect on how I currently see things. If this isn't an answer exactly, it is a different point of view where I think I hit the root and lots of top level symptoms evaporated.

I have mentioned quite a few things on this post, but not being a rich man, and seeing that every little symptom has an herb or drug, for about $500/month I could theoretically be well if I just took all the stuff on the natural side. Many of them I have tried singly with success. Money aside, this still doesn't 'ring' true for true health for me. I know the ring of truth is sometimes theoretical and not helpful, but let me put down recent success, and hopefully it can show some of the curve balls and optical illusions.

I have been many times on the road where something works... for a day, like the drugs you mention above, Misshalfway. More vegetables. Organic beef. Organic vegetables. Gluten free was the first thing that reliably took an edge off, but seemed to make my joints hurt for the first few months doing it, a trade off that was worthwhile at the time. Certain vitamin mixes, better than most, more reliable than most, but ultimately ended up feeding the 'beast' and needing to cycle off. Cardboard and various candida diets, good for my brain, bad for my body, tended to have rapid weight loss. So I would cycle back and forth with enough positive feedback to keep Candida on the radar because of that type of success, but not know how to deal with it and maintain physical weight and energy. If something worked, it was always a two edged sword, cost too much and worked a little, worked but weight dropped off, some trade off at every step.

A relative who I can relate very well to, has taken the psychological route, viewing it as depression that caused fatigue where I had viewed it as fatigue that could cause depression. He took antidepressants that made him hallucinate, others made him happier with his situation, but did not help him find the motivation to get out. So he was getting similar results on the psychological path that I was getting on the nutritional path. My radar has always steered me clear of medications, although I have taken ritalin, gave me better concentration at a price but ultimately my whole being rejected, synthroid, which as noted above, worked GREAT for about a week, then felt like I had some precipitate that felt like magic sand, if anyone remembers that stuff, floating in my blood, so I went off that without further questions and felt nothing to pursue there. Did I mention that heightened judgmentalism and frustration with the failure of others was on the list of symptoms? Touches on the temper sector. Also have tried time release ritalin, found myself being more 'kind', shoveling lots of driveways in the winter while not 'feeling' sped up... but even that wore off to irritability, why, stimulating a burned up nervous system would make me irritable I don't know... Wellbutrin was next, and I was about ready at the time, but my relative on the psychological route that I felt was closely related enough to think I was similar to, his psychologist has said Wellbutrin was number 25 on a list of about 25 things he would try, combined with coworkers who had major stomach pain and permanent vision change on that one, was happy with generic prozac. So, that wasn't encouraging on top of the fact that my 'radar' still said no, and that hadn't led me wrong at that level. I give the above as a short backdrop for success listed below.

I refinanced my house, pretended like I was going to save my money on the payment I didn't have to make in December, but also was ready for another round against this 'thing'. I called a couple of health food stores, told them I wanted another swing on this shadow Candida, see if I could connect with this invisible enemy, and clear the cloud and the fatigue. They mumbled about different products, I have had that vibe, not enough of a response to make me want to try any of them, but also they all seemed to go on about this New Chapter Candida Take Care that I mentioned above. Strange. I haven't heard anything reviewed that glowingly. How much does it cost? Yikes! Currently 25% off? Well, let's give it a try. If it hits the root, it could be the best thing I did in a long time. The cloud needs to be removed. I tried other things in this same time frame, and I could comment on them, but the words would be wasted as the result is much smaller and any benefit from them only builds on this and is not maintained without it.

So, first, me. Sleep is better, more complete, I have a better shot of waking up better. I get things done, simple things while thinking about them rather than, say, psyching myself up to clean the breakfast table. You know, easy stuff. Less wandering around. No brain cloud. Memory is not being rearranged causing me to get things backwards reliably. Faulty x-ray vision is repaired, I can see what is in front of me rather than requiring my wife to point out the obvious, and a physical emotion that contributes to the OCD cycle which I couldn't have easily pointed to before it cleared. Cleared! Not sure if it was peaceful or an eerie silence, but certainly a nice change. I am out now so waiting for the next shipment. My wife says my teeth have lightened a few shades.

For my wife, better sleep, thicker hair, better energy, not dragging so much, teeth have cleared and toenails coming in clearer, keep in mind she had no complaints and wasn't looking for anything. I just had her do this because they say it is pointless for one spouse to do it without the other as it will go back and forth. Her skin tone changed, improved, rosacea went down quite a few shades although not gone, all good things.

I have seen 'this' growing on my oldest daughter the most, so I got some for her after I saw what the first bottle was doing for me. She stopped tearing the house apart for candy, cookies, and other snacks after school every day. When at church activities that have goodies, we are no longer finding adults reporting that she has had 5, 6, or 7 cupcakes when we weren't looking. She got candy for Valentine's and didn't eat it in the first 2 minutes of opening it, but saved some for later. Her temper is down, her whininess is down, and the other day while being upset about her homework to the point I couldn't help her, she suddenly just 'felt' like taking one, she mixes it in juice, came back, calm, looked again, said duh, that's the answer, I forgot this part, and calmly got the right answer. WOW!

Finally, the youngest, number 5. She had terrible breath and dirty diapers to match. Other than that, happy, but she wouldn't sleep through the night. As I have reflected, my mom says I was rough to raise, harder than the other 4 combined the way she remembers it, was the last to sleep through the night at 18 months, spit up a lot, so I have had reason to believe this has been with me my whole life. It seems to be a large part of the reason I could seem smart but never do well in school at any grade level, very frustrating to my teachers, not to mention me. Right, back to my youngest. Not sleeping through the night, stinky diapers and bad breath. On a hunch, taking yet another punch at these shadows, hoping to connect, we gave her half in the morning, half at night with half a yo baby yogurt, one a day of each. She loves it. It's part of her morning and night time routine now. After day 3, she slept through the night and has since with few exceptions that I can call normal, she has a cold and is miserable, things like that. Diaper smell and bad breath both cleared up, her temperament wasn't to a point that I was looking for change in that, but those three symptoms cleared.

So, with that experiment with that silly little brand of cranberry extract that causes yeast to let go and pass rather than die and pass, there is no die off, only the benefit of less bad critters eating our food and turning it to poison and making us feel crappy. You can say that here, can't you? Oh, right, my oldest daughter eats less and feels fuller and doesn't get sick right before lunch at school every day either. To have all of these things clear, not requiring a hundred things for a hundred symptoms, takes me more firmly to the parasite point of view, which before I could only consider as a possibility that made enough sense to not drop. I know there are many more parasites than Candida, but finally I find something that doesn't require me to choose between my brain and body, works for my whole family. I would like to give it to all, at about $140/month. Yikes! Might be willing to cut the phone and something else. It's about at that level for me. In any case, lots of success, consistent with my belief that it should be 'boiled down', work on a lot of things, and make a lot of things disappear. The Cognitive Behavioral Therapy on my part allows a behavior retrain when the emotions do cycle back, so they are also cycling down over time. Cranberry extract and parasites. Don't write them off. Parasites, put them closer to front and center. Their whole job is to be subtle and undetected. Detect them. Balance them. Candida belongs in your gut, can't be killed off. Keep it small and in its place. Best of luck to you all, really. My faith is with you. Remember, we're all in this together. It CAN be done.

RobertP