Re: scuba dive messed me up and I can't heal, help please

Hello,

I suffered from what I thought was chronic fatigue syndrome (CFS) and fibromyalgia (FM) for 9.5 years. Below is a list of things that have helped me. I wanted to pass them along in hopes that they may help someone else. I am not a medical practitioner. Always consult a physician before starting/stopping any medication, etc.

How It Started:
On Thursday, Sept. 27th, 2001, I went to bed feeling fine. The next morning, Friday, I woke up feeling like I hadn't slept. No matter how I tried, I could not get going. I went to bed very early that night and slept for 14-ish hours. The same thing happened the next morning. I awoke feeling like I hadn't slept. Later I learned the technical term for this is non-restorative sleep. This continued day after day. I was able to push through it but after three weeks I became very concerned and went and saw my doctor. He said I probably have a virus (mononucleosis) and it will eventually pass. He was wrong and it never did go away. It got worse and I developed other symptoms. From my research I learned that it can be common for CFS/FM to have "sudden onset" after a traumatic experience or illness.

My Symptoms:
Here are some of the symptoms I had in no particular order (or maybe what bothered me most):
1) Non-restorative sleep. I would sleep and sleep and sleep yet never feel rested. This was not only a physical tiredness but a mental and emotional tiredness.
2) Fatigue and post-exertion malaise. I was beyond exhausted. Everything was an effort. I did not bounce back after any kind of physical activity. I couldn't even mow my own lawn. I did only what I had to do like pay bills and work.
3) Insomnia. It was terrible. I was dead tired and could not fall asleep and, when I did fall asleep, it was hard staying asleep. The slightest noise would wake me up.
4) Pain (FM). I hurt all over all the time. Eventually this started to steal the joy from every moment. It felt like my muscles would clench uncontrollably especially when I would sleep. I got a mouth guard because I was grinding my teeth. I had to get both a top and bottom piece because I was slowly wearing through the top guard. It was pricey, $300, but better than fixing cracked teeth.
5) Brain fog. It was hard to think. I felt drunk most of the time. I wasn't able to read or learn anything new.
6) Static in the brain. This is very hard to describe. The only analogy I have been able to come up with is it's like listening to an AM radio station with lots of static. My brain was working but there was lots of interference. To this day I still have trouble listening to music. It just doesn't sound right.
7) Sensitivity to noises. The tiniest noise would bother me. My neighbor had dogs that would bark all day and it drove me insane.
8) Sensitivity to smells. Certain scents, especially perfumes and the like, made me feel dizzy and sick.
9) Sensitivity to touch. I didn't like being touched. I had to stop wearing jewelry (e.g. watch, ring, necklace).
10) My vision started going black-and-white-ish. I saw colors but they looked dull.
11) Intolerance to cold. I was always freezing even when I was in bed with the covers piled high and sweating.
12) Irritable bowel syndrome (IBS). That's a euphemism for gas (both ends), bloating and loose, water stool. Worse, I always had this pain in my gut. Eating would make it worse. Sometimes I would be starving but I wouldn't eat because it would hurt so bad. When I did eat, food would travel through my in 5-6 hours.
13) Memory problems. It was hard to remember things.
14) Irritability.
15) Anxiety.
16) Depression but, and I want to make this clear, it was a symptom not the source problem. The doctors always wanted to give me anti-depressants. I always said no but my wife kept saying I should try them. I tried three different kinds and I will never take an SSRI again. I made my wife promise to never, ever let the doctors give me one even if my life depended on it. The first one, Effexor, was okay. I had lots of side effects all pretty minor except the big one. My equipment stopped working. That was unacceptable. I tried Welbutrin (sp?) next. That made me feel like I wanted to fight with everyone so I stopped that pretty quickly. The last one I tried was when I was feeling really bad. I took Cymbalta. I started having spasms and I lost voluntary motor control of my limbs. It happened for approximately five minutes every three hours over a span of about 18 hours. I figured it was because of the time release capsules. It was an extremely traumatic experience when I was at one of my lowest points. Never, ever again will I take SSRIs.
17) There are more symptoms but it's hard to remember them all and I try not to think back too much less the darkness return (like how Beren would not speak of his passage through the girdle of Melian).

Things That Helped Me:
Here is a list of things that helped me. There are in order of most significant to least.
1) Submit to God. I always had plans for what I was going to do with *my* life. I got a B.S. in Computer Science and got a job programming. I would climb the corporate ladder. I would acquire all the material wealth I would need to be comfortable including a nice house, car, etc. I would find a good wife. Raise a family. Maybe start a company. After I had established *my* kingdom I would then turn towards God.

I was/am Christian and I have always had pretty strong faith. Little did I realize how much my faith would be tested by my illness. As my illness progressed I was able to do less and less. Even fun things became a chore. My life was stripped away from me a little piece at a time. Towards the end I had only my job (teaching programming at a local community college) and my wife. Everything else was gone.

I have discovered that if you hurt bad enough for long enough that you have a breaking point. I found my breaking point. Had it not been for my faith and the grace of God I would have died. I was broken not once but about three different times (yes, I'm very stubborn). I started saying things like, "Lord, I give up" and "Lord, what do I do?", "Lord, take this burden from me or make it all stop, PLEASE."

I was flipping through the TV channels one day and I came across Joyce Meyer. I listened to her for a while and what she said resonated with me. I continued to watch her because I learned something helpful every time I saw her show. After a month or two I saw a show on submission. Something clicked. I started trying to submit to God. I began to *voluntarily* let go of all the things *I* wanted to do. After practicing this for a month or two I started to find the other items on this list. For me, the more I have learned to trust and rely on God, the better my life has become and not just in a physical sense. If I had to look back, I would say God used my illness to wake me up. I'm not saying He caused it but I think He used it as a teaching tool. Most importantly, it was His grace that let me find the other items on this list. At the end I'll explain the computer search techniques I used.

2) Hypothyroidism Type 2 (HT2). Most of the medical community doesn't know about HT2. They know only about plain hypothyroidism which Dr. Mark Starr calls Hypothyroidism Type 1 (HT1). HT1 is where your thyroid gland produces little or no hormone. This can easily be detected by a blood test. I have had the blood test at least three times and my results where always "normal."

HT2 is where your thyroid gland produces an amount of hormone in the "normal" range but your body needs more. There is no blood test for this. I came across a radio interview in MP3 format that Dr. Starr did. I listened and I knew I had found a huge piece of the puzzle. Most of my symptoms which I thought were for Chronic-Fatigue-Syndrome and FM mirrored almost exactly the symptoms for hypothyroidism.

Dr. Starr says to check if you have a low basal temperature and/or myxedema combined with any other symptom (e.g. fatigue, pain, brain fog). If you have those, according to Dr. Starr you could be HT2. I have always been cold. I took my basal temperature anyway and I was in the 96's. I also had myxedema. I'll explain how to check both shortly. Dr. Starr said that his patients that took Iodine for four weeks and then began taking desiccated thyroid had most of their symptoms resolve or get much better. In early 2011, I ordered both off of Amazon and started taking Iodine as soon as it arrived. According to Dr. Starr, skipping the Iodine can cause permanent damage to the adrenal glands due to adrenal burnout. Then I started taking the desiccated thyroid. That was in February of 2011. Wow, within a day I knew I was on to something because all of my symptoms moved. I felt different. I had terrible cravings for the iodine (according to wikipedia, iodine deficiency is the leading preventable cause of mental retardation. I'm not kidding. It's in the first or second paragraph.) After two weeks of 50 drops a day my cravings subsided. During the first two weeks of taking thyroid I would have terrible attacks of the sleepies. I would sleep hard for four or five hours but, and this is a big but, I would wake up somewhat refreshed. I was a little freaked out by how hard I would go down. I mean I was like a drugged elephant. Eventually I seemed to "catch up" with my rest. Also, my pain started to decrease. It's like waking up from a nightmare. After 10 months I can report that I have much more energy and much less pain. Life is pretty good now! All of my symptoms have greatly improved. I'm not 100% but I'm not struggling through each day anymore.

I know now that I never had Chronic-Fatigue-Syndrome or FM. I have always been HT2. Dr. Starr says it's hereditary and usually passed on by the mother. I look at my mom and I can see she has a mild case of it. Same with my wife. Her mom is HT1 and my wife tests at the low end of the "normal" range. She started taking iodine and desiccated thyroid and had improvement.

Dr. Starr explains how to take your basal (resting) temperature. First thing in the morning put an old-school glass thermometer in your underarm for 10 minutes. The digital ones are too inaccurate. More than one degree below 98.6f could mean that your HT2. Men and post-menopausal woman can take their temperature any day. Pre-menopausal women can take their temperature only on the 2nd, 3rd and 4th days of bleeding. Dr. Starr recommends shaking down the thermometer over something soft like your bed so that when you drop it it doesn't shatter on the tile floor. BTW, if you sleep with tons of blankets and cloths, you'll need to take off everything but what a normal person would wear about an hour or two before taking your temperature.

Myxedema is a thickening of the skin. Pinch the skin on the back of your hand. Notice how thin it is. Now pinch the skin on your underarm slightly to the outside. If it's thick that's myxedema. Before I started taking desiccated thyroid my skin was thick on my underarm. Now, after 10 months, it's much more like the skin on the back of my hand.

Here are links to the radio interview with Dr. Starr. I apologize for referencing another web site.

Launch in external player or download.

Launch in external player or download.

3) Diet. It turns out I have strong food allergies to dairy, gluten and weak/mild food allergies to potatoes, coffee, tea and a few other foods. According to Dr. Starr most people with HT2 are dairy and gluten intolerant. In 2009, almost two years before taking thyroid, I discovered my dairy and gluten allergies on my own. Long story but suffice it to say that when I stopped eating cheese, ice-cream, bread, crackers and everything else except meat, fruit and veggies I felt much better. Many of my intestinal troubles subsided. It's hard at first but since I felt better I got used to it.

There were two other pieces to the puzzle which I will discuss below. It took me months and months to wean myself off of the foods I loved but to which I was allergic. Cheese and hot tea were the hardest. I started to treat breakfast like dinner. I found a good rice bread substitute. It's in the freezer of the health food section of Krogers (our big grocery store chain). It took about a week for my insides to calm down after totally stopping dairy. I tried to cheat with digestive enzymes and lactose-free stuff. No good. After being good for several months I can have pizza about once a month and hot tea or coffee about once or twice a week with problems. If I go more than that I start to get troubles again (gas, bloating, pain, loose stool).

I also had to give up Sugar and artificial sweeteners. No fruit juice. No alcohol. I drink spring water as much as possible (no fluoride). Iodine displaces fluoride and now I can taste the fluoride in the tap water. Yuck, tiggers don't like fluoride.

4) Liver and gall stones. I always had intestinal pain even when I didn't eat. I could not figure it out. One day my searches revealed how to do a "liver flush." I found it on the CureZone website. Curezone has a bunch of forums for all kinds of conditions. I was able to do massive amounts of research by reading about the things people tried with symptoms similar to mine. When I read about Liver Flushing something clicked. This was after I had started to submit to God and I'm sure it was His grace that gave me the desire to go through with it. I did my first flush and I was stunned at what came out. Hundreds of small stones the size of the head of a pin and smaller. Also about 50 pea-size stones came out. BTW, the come out the back end not the front. It doesn't hurt but it is uncomfortable. I immediately felt the pain in my abdomen decrease. But, over the next few days, the pressure built back up again. I did another flush and it felt better again. I had tons more stones come out, too. I did a total of 11 flushes (8 of which were doubles) over a period of about eight months. The last one had almost no stones. Wow, was I happy and I felt so much better. No more constant intestinal pain.

5) Parasites. Again by the grace of God I was researching and something clicked. I thought maybe I have parasites. I had been out of the country on scuba trips before I got sick and maybe I picked up something on one of those islands. I had been tested several times but the results were always negative/normal. I was still having intestinal troubles but I was being good with my diet and I had done a bunch of flushes. I had done a parasite cleanse years before and it had helped. I thought maybe I got them again or maybe I never got rid of them all the first time.

After researching on Curezone I found several things to try. One of those was food-grade quality diatomaceous earth (DE). From what I understand, DE is the fossilized remains of diatoms (hard-shelled algae). It's harmless to humans (except if you breath it) but it's deadly to bugs. It's like broken glass to them. I found them for a good price on the internet and ordered some. I made a mixture of this with a few other things (walnut/wormwood extract, clove oil, oregano oil, grapefruit seed extract) and drank it. Wow, it tastes awful. Within a few hours I felt something different in my intestines. It didn't hurt so much. This is gross but I examined my stool. I was horrified to see dead worms. After taking the mixture once or twice a day for over a month my innards feel better than they have in a long, long time.


6) Irrigating my sinuses. I had some sort of infection in my sinuses and I think I had it most of my life so I was just used to it. I found a posting online about irrigating your sinuses with saline and hyrdogen peroxide (H2O2). Get a 3oz bottle of nasal spray, distilled water, kosher salt (kosher makes a difference) and H2O2. Empty the nasal spray bottle an refill with 1/4 to 1/2 teaspoon H2O2 (Hydrogen-Peroxid) (start with less rather than more), a pinch of salt and distilled water. Bend forward over the sink and fill up your sinuses. Rinse and repeat as necessary. Be careful when starting. The H2O2 (Hydrogen-Peroxid) will irritate your sinuses and may cause them to swell making it harder to breath through your nose. I find it best to irrigate in the morning after I get up rather than before going to bed so I can breath through my nose as I sleep. This seemed to help a lot with my FM and restless legs.

Search Techniques:
Here is how I was able to research my illness. It used to be Google had a cool search feature. If you put a plus sign (+) in front of a word or phrase it would require that word or phrase to be in the result page. A minus sign would exclude pages with that word or phrase.

Some example searches I used were:
+"chronic fatigue syndrome" +forum +"I take"
which would usually find result pages on a forum where someone with Chronic-Fatigue-Syndrome would discuss how taking a particular drug/whatever would help/not help.
+"fibromyalgia" +forum +"I feel"
which would usually find result pages on a forum where someone with FM would discuss how they felt.

Sadly, Google removed the plus and minus features sometime in Sept/Oct of 2011. I think the "advanced search" still works but I haven't tried it.
I found it on Google /advanced_search. It appears you can require certain words and exclude others. Phrases should be enclosed in double quotes.

By reading other people's stories I learned the common terms used to describe my symptoms. From there I was able to read all kinds of stories about what people tried. That's how I found the link to the radio interview with Dr. Starr about HT2 on CureZone.

I also found AskAPatient. People post their experiences taking different medications. Now I always read the reviews for a medication before I take it. That's why I never took Lycera. Some of the side-effects give me the heebee jeebees just thinking about it (e.g. blindness).

Some Other Things I tried:
-I took Colloidal Silver for a long time. I think it helped. I experienced flu-like symptoms during use that eventually went away. I consumed about 4oz a week at 30ppm for 1.5 years. I stopped taking it went I didn't feel anything different when I took it.
-I went into a hyperbaric chamber. I didn't feel any different.
-I tried massage and acupuncture. Massage initially felt good but with a few hours I would usually experience horrible secondary fatigue/flu-like symptoms that would last days or, one time, two weeks. Acupuncture was nice. It felt good but it was expensive and a long drive. The effects didn't last long so I didn't continue. Besides it was treating the symptoms and not the root problem.
-I tried a bunch of different vitamins and minerals in both pill and liquid form. Never really noticed anything except for Vit D. I still take that every day and I notice a slight improvement.
-I tried several types of magnesium even the oil that you rub on. It just made my IBS worse or did nothing.
-I tried that mona via stuff. Tasted good but didn't do anything.
-I took Vitalzym SEB for a while. It helped with my pain and my muscle burning feelings but I always felt it was treating the symptoms and not the source.
-I tried light therapy with a Verilux light. My wife thought I had seasonal affect disorder (SAD). Turns out the cold of winter made my hypothyroidism worse.
-I had my mercury fillings replaced with ceramics and I did a detox. That helped me feel better but it wasn't related to my CFS/FM problems.
-I had a bunch of blood tests. All negative normal.
-I saw a CFS/FM specialist who took a bunch of my money and didn't do anything for me. He wasn't even a good listener.
-I saw a gastroenterologist who put me on Protonix. Ugh, vile stuff. Never again. Now I always check out drugs on AskAPatient before I take them.
-I was on Xanax and tramadol (ultram) for a while. I liked Xanax a lot and combined with tramadol at night I was able to get some sleep. My wife said I wasn't all there when I was on Xanax. She said it was like I was on auto-pilot a lot which was true. I stopped after about a year and a half.
-I'm sure I've left some things out but that's all the comes to mind right now.
-Melatonin for sleeping. Didn't do anything.
-Relora for sleeping. Worked really well with no side-effects or hangovers. I stopped taking it when I started sleeping better due to thyroid supplement.
-Tested for apnia. I have classic alpha wave intrusion (waking thoughts during sleep cycle). No apnia but I tried a CPAP anyway. Didn't help.
-Guafenison (AKA Mucinex). It shifted my symptoms and did seem to offer some relieft but it put in a depression. It snuck up on me. My wife asked me to stop taking it after a month. I would have stuck with it but it felt like it was treating the symptoms and not the source.

Summary:
I'm not 100% and I'm definitely not the person I was but I'm doing okay. Discovering that I have HT2 made life so much better. I read that it takes 12-18 months to fully recover and it's been only 10 months for me. I can't wait to see how much more I improve over the next 8 months.

God Bless.

Sincerely,
Lord Ugh

Update #1:
It's been 18 months since I started taking thyroid. My energy levels are much better I'm still not my old self but the days aren't so bad. I discovered that my food allergies are pretty serious. I can't eat glutten or dairy (including eggs). As soon as I do my insides start hurting. It's a dull ache that I can't point to. It causes my whole body to tighten up. I came to the realization that it wasn't just one thing wrong with me so there would be no silver bullet/easy fix. I am HT2. I have strong food allergies. I have some sort of infection in my sinuses that causes FM-like symptoms. The infection is resistant to anti-biotics. Colloidal Silver and sinus irrigation is helping but I'm missing something. I keep plugging away. Each day I get a little better.



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