AJ has some questions on fatigue

Margaret:

So glad to see you up and running.

You are performing a service that will be recognized in the future!

Besides using natural immunity boosting supplements and B12 injections is there anything else that would ease the fatigue...I get really tired of being tired!

Keep up the good work

AJ

Yes, Tired of Being Tired

I think the glyconutrients have much promise Read this section of the very LONG page .. and then what the doctors there have to share

You see, if it is autoimmune hemolytic anemia going on (you'd have a lot of the CFS or CFIDS symptoms, too) ... then your immune system is overactive because it is messed up (it is attacking YOU - It is autoimmune due to a chemical exposure somewhere ... usually with the start of flu-like symptoms & eyes burning and urine turning dark and FATIGUE.

So if the immune system is helped to function properly, not only fatigue, but many other ailments should subside.

A Gulf war vet, Chad Pagel of Indiana, shared with me that when given oxygen his seizures stopped. Also a transfusion of whole blood at body temperature and given SLOWLY would help. Procrit shots? I don't know. My friend who I suspect was harmed by long term use of cleaning products such as Lysol Tub 'n Tile died last week.

They probably didn't do either of those things, but had upped her Procrit shots to weekly & she had a 'heart attack' in the doctors office. Couldn't save her ... but I don't think they knew what was wrong ... & I don't think an electric jolt to a rapid heart beat would help any.

Wow!

I have had flu-like symptoms for years and it show up in the urine!
And my heart has started racing madly the last six months. My BP is frequently 185/145!!!! And them it goes back to normal for a while and then up again. My pulse has been at 136 several times in the doctor's office.

I too, had a heart attack; but it was just a tiny one, and I'm only 58!

And, apart from smoking, I do not fit any of the criteria.

I have officially been diagnosed with FM.

I was using Melatonin for quite a long period of time - sleep being something that eludes me, and I ran out; and lo and behold... the BP and the racing heart came down.

I have RH, and with the Cox-2 inhibitors out of the question, and even any of the ibuprofen or ketaprofen family a judgment call; I have gone back on prednisone for a while.

And it doesn't help as much as it did the first time around! But I am only going to use it until the warmer weather, when I usually get some relief. I do not want to gain that 60 pounds back!!!! I did not recognize my own face in the mirror! But the drug gave me about five years of relatively pain free existence.

I have had it since my teens, and it has spent more time in remisssion than not; so I guess I am very lucky in comparison to some people.

I can remember having problems screwing the tops on the milk bottles for my son when he was an infant! And he is 35 now!

I am seriously concerned about the effects that DU is going to be producing in vets. If Agent Orange and Purple are any indication of what has happened, (Vietnam is still producing birth defects) and DU is so much more dangerous.

Oh, I am also HCV+; diagnosed in '94. Been through three rounds of Interferon - UGH! But now my alpha-feta-protein (AFP) test is starting to climb; so I am saddened.

My primary specialist says that looking at my blood work if he did not know I was sick, he wouldn't know! So I have been lucky! I got over being angry years ago, when I was first diagnosed. A blood transfusion during a hysterectomy! Inside the window of time that doctor's say is the period when tainted blood was entering the system.

But 99.44% of the time I do not even think of it. Why?

But I am getting tired.

Thank you Margaret for any leads, and also for recognizing and publicizing that people who are fatigued are not lazy!

AJ

Margaret -

After starting to read through your info, And discovering that some of the symptoms that I have, and did not realize were symptoms, are present on the lists, I am going to get copies of all my blood work for the last 15 years and start doing some digging. Thin skin and said skin itching like crazy are two of them.

Two years ago, I moved from a densely populated "downtown" area to a semi-rural area 50 miles outside the city!

The change was almost immediately. I feel better in every respect! What in the world are we being exposed to - actually a facetious question!

I also have a new GP, a young (early 30s) woman from South Africa, who is very bright, dogged and determined; and we both love Italian shoes! I am sure she will help.

She is very sympathetic to the fatigue. I was surprised. I thought it would take me a year or two to train her that it was real! I am sure she will assist me with any serious quests.

Thanks again

AJ

OK, AJ, let's just hit the highlights of some of the things you share ... 'flu-like symptoms frequently?' Then look for what is going on right then or about 15 minutes before. What could be a source of 2-butoxyethanol vapors? ... even if 2nd hand from someone else who has been exposed & could be breathing the vapors into a room as they try to expel them?

Doctor says he couldn't tell by looking at the blood info ... that you were ill. That's just the point, the first take on what the blood shows, doesn't let the doctor know that the Retic rate is elevated (though over time it isn't) and that the red blood cells they are counting are becoming more and more immature. That is the fatigue, immature red blood cells that don't carry the oxygen, store the iron & help you utilize such ... your body is crying out for oxygen with the rapid heart beat. Maybe the heart thinks that if it pushes the blood through your system faster, you will get the oxygen you need. Don't know. But with immature red blood cells the white blood cells read too high & have to be recalibrated manually ... the liver counts are higher than they would otherwise, be, etc. I'm sure doctors have a long list of adjustments if the red blood cells are immature.

It's exciting that you have a doctor very interested in this. When doctors start looking at this problem in a new light, it will be amazing how quickly the mystery will unravel. Part of the definition of CFS, CFIDS, FM ... is that they don't know what the fatigue is.

Do you feel like this? The not sleeping by the way is a function of the nervous system. The chemical I suspect for CFS, CFIDS, FM ... 'gulf war syndrome' also damages the Central nervous system. Suicidal tendencies, CNS depression, short term memory loss, difficulty concentrating and difficulty sleeping are all a part of that. And lets not forget the 'short fuse' ... flying off the handle for no reason over everything all the time. If you don't notice this, others surely will!

You didn't comment on headaches. I'm wondering whether they might be pituitary headaches. This chemical seems to attack the pituitary, so hormonal levels can be high or low in any of them ... One lady said her headaches stopped when she went into menopause.

Melatonin? If you look on the bottle you will note that it is not advised for people with autoimmune issues. I suspect the pain you are dealing with in whatever fashion is an aspect of the immune system attacking you.

Moved out of the city? Then less MTBE in the gasoline if your state hasn't phased it out yet ... AND if it is being released into the air from various manufacturing companies: dry cleaning; plastics business, etc. Then you are spared some of those vapors getting into your eyes.

You talk about other things like DU and ? I haven't gone beyond what 2-butoxyethanol does, because all by itself, it seems to do all of the ailments I've heard mentioned by the 'gulf war syndrome' vet and those with CFS, or more precisely, Chronic Fatigue Immune Dysfunction Syndrome.

It is interesting to note, that when you look up what Dioxin does, all by itself, it's not a match for what the Vietnam Vets came down with. The list that was shared with me ... by a Vietnam vet ... is more what 2-butoxyethanol would do. For sure: soft tissue sarcomas, Non Hodgkin's Lymphoma ... down to the 'we don't know' brain tumors. The CDC started tracking brain tumors in 1977.

May I ask what your parents did during WWII?

By the way, I have no medical background ... but I've been interested in this chemical because I know workers of the Exxon Valdez oil spill cleanup who were harmed by it. I have had help from lots of wonderful people, but for the most part I am sharing what I've learned about what a chemical does ... please ask your doctor to consider some of this info & to take a closer look at the red blood cells and the immune system. The most important first information to share with your doctors is a hemolysis such as this * Acute exposure; its 'look' changes over time.

In the beginning, I suspect the immune system is overactive... and then has trouble many years later in functioning at all. (Wearing out?) But if it was only doing what it was supposed to do ... attack the bacteria .... and wasn't busy attacking you ... then surely it would 'last' longer.

I suspect there could be bacteria in your blood & urine, such as this gulf war vet reported to me.

Looking up your own blood info from the past? That's a good idea, as you may see a trend & change in what is normal for YOU. What health changes have you had?

July 1, 2005

Some Symptoms of a chemical exposure

I get diarrhea when I walk into a room that is being painted or where it has been cleaned with products that contain EGBE ... the vapors get in my eyes, and I have to run for the bathroom.