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CFS is a misdiagnosis

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Old 08-29-2004, 10:03 PM   #16
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italys_finest18 HB User
Re: CFS is a misdiagnosis

I agree that they need further help, even if they search there whle lives disease can hid in your body and it's there making you sick but never registers on a test. I am just curious what lyme test came up positive for you?

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Old 08-31-2004, 02:52 PM   #17
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tkgoodspirit HB Usertkgoodspirit HB User
Re: CFS is a misdiagnosis

Hi chilln: It pains me that you sound so desperate. Listen, you are right not to sit and argue about what you have or don't have, whether it is a syndrome or a disease. For heaven's sake none of us here are doctor's for sure, but it doesn't make what you are going through any less "real". chilln, you know that the author of the book Seabiscuit has CFS. It's listed on the jacket with her bio. She actually uses some of the profits of the book and the movie to help research CFS. So, yes, it's very real, and it may have been cause by who know's what. There is a lot of theories that believe people that have Fibromyalgia may have it due to some trauma they experienced, like a car accident, surgery, some trauma to their body that caused the brain receptors that control pain to go "out of whack". Anyway, I may suggest taking a look at the Fibromyalgia section of these boards. So far there is no "cure", but there is a lot of different ways to achieve some relief and cope. New medications to specifically treat this condition are being researched and tested as we sit here. I have Fibro as well as problems with my cervical spine, lumbar spine, carpal tunnel syndrome and bursitis in my hip. Notice that all of these are syndromes, and you are right, for instance, my carpal tunnel was most likely caused by my waiting tables for 15 years, but it is real and something I have to live with. It can be treated with meds or surgery. And to be honest I fully believe, that if you can, if your insurance allows, (which they usually allow 52 visits a year) go see a proffessional.(like a physciatrist or social therapist) I see a therapist one to two times a month, just to talk. It's nice to talk to some one who can help you when you feel like you are overwhelmed. I don't feel embarrassed by it, and I wouldn't do without it. My therapist actually sees a lot of people with Fibro and other conditions that change our lives. I also see a phyciatrist who prescribes me medication to help me. I have good doctors who help me with my pain meds and other meds that help make me more comfortable. So, chilln, don't give up, don't give in. Stand by what you believe, you know yourself better than any of us here know you. Find a doctor that you feel comfortable with, if you don't already have one. Sometimes that takes a bit of looking. You can ask around your area. Maybe there is a support group at your hospital for people with CFS. Hang in there honey. Don't ever doubt yourself.

Good day and good karma.

Last edited by tkgoodspirit; 08-31-2004 at 02:59 PM. Reason: wanted to subscribe

Old 08-31-2004, 06:20 PM   #18
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Exclamation Re: CFS is a misdiagnosis

Hi! I wanted to update a recent post on this thread. I will also duplicate this reply on the Fibromyalgia board.

Since there has been so much discussion and reaction to the links between CFS, Fibro and Lymes Disease, and the Western Blot test has been "thrown" around, I did a little reasearch about this test and want to share what I found on the Net.

First: The description of the Western Blot is as follows: A Western Blot is a method in molecular biology to detect a certain protien in a sample by using antibody specifically to that protien. It's name is a pun off the name Southern Blot, a simialr technique developed earlier by a man with the last name of Southern. It also used to be called a "protien immunoblot".

There are different variations of the Western Blot. Specifically the Lyme Western Blot.
lgG Western Blot: allows the antibody response to be visualized. This antibody is often present long after symptoms (lyme's) subside. If the lgG is negative then a lgM is ran.
lgM Western Blot: indicates exposure to B.burgdorfen. It can be positive for 6-8 weeks after tick bite.
LDA (Lyme Detection Blot Assay): this is a direct detection of Lyme antigen in urine.
Reverse Western Blot (RWB): detects antigens basically the same as the LDA, it just targets additional antigens.

Some other facts I found on the Net about this test are:
The lgM West Blot often shows positive in patients with persistent infections. Patients testing positive for Syphilis may also test positive for the Lyme antibody. Western Blot tests are not only given to dectect Lyme Disease, but variations of the Western Blot are given to detect other infections like, HIV or Herpes. The Western Blot uses many variations to measure antibodies and antigens.

So, there it is. There is more info out there. I just wanted to put out some info on the boards since reference to this test has been made in a number of posts.

I hope this informs you some what.

Good day and good karma!

Last edited by tkgoodspirit; 09-06-2004 at 09:17 AM.

Old 09-02-2004, 07:29 PM   #19
Dear Maggie
Join Date: Jan 2004
Location: Valdez, Alaska
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Dear Maggie HB User
Fighting your red blood cells

Well, the definition of CFS and CFIDS and 'gulf war syndrome' are similar ... the doctors say at the very least that they don't know the cause of your fatigue.

Yes, immune system is fighting something: your red blood cells. AND it does not show up in the regular blood work. Very much a mystery. I suspect 2-butoxyethanol poisoning for the cause of the fatigue of these. You can check two things to see if the harm of this chemical should be suspect for you

1-Do you have blood in your urine (even just a trace)?

2-Do you have lack of mature red blood cells? In other words, is the ratio off between the mature and immature red blood cells? Regardless of the results of the 'reticulocyte count' and the numbers of red blood cells being formed (a lot in the beginning, to not enough over time) there will be too many red blood cells that are immature.

Walter Reid Army Medical Center says autoimmune hemolytic anemia is very rare and that the 'gulf war syndrome' vets have no more incidence than the general public. I suggest that it is as commonplace as those who have CFS, CFIDS, 'gulf war syndrome' Look for it. Remember, too, that when you have too many immature red blood cells other tests are OFF. WBCs and liver for starters.

Besides the fatigue: 2-butoxyethanol causes the following per 2003 research,

Symptoms of hemolytic anemia are:
Pale color
Shortness of breath
Rapid heart rate
Yellow skin color (jaundice)
Dark urine
Enlarged spleen

This chemical also causes: Narcosis
Damage to the kidney
Damage to the liver
Present an abnormal blood picture showing: Erythropenia
Present an abnormal blood picture showing: Reticulocytosis
Present an abnormal blood picture showing: Granulocytosis
Present an abnormal blood picture showing: Leukocytosis
Likely to Cause Fragility of Erythrocytes
Likely to Cause Hematuria

from Hemat = blood and
uria = of urine
· Hematuria simply means blood in the urine

It causes Central Nervous System (CNS) DAMAGE:

Difficulty concentrating

Short term memory loss

Becomming very irritable 'fly off the handle all the time over nothing'

Difficulty sleeping

Suicidal Tendencies

along with ... Central Nervous System DEPRESSION

Loss of taste
Headaches and Stupor.

Causes skin irritation.
Causes severe eye irritation - damage to tissue possible
Irritating to mucous membranes and upper respiratory tract

2-butoxyethanol CHRONIC EFFECTS - TARGET ORGANS, per research:

SENSE ORGANS AND SPECIAL SENSES (Other olfaction effects)
BEHAVIORAL (General Anesthetic)
BEHAVIORAL (Altered sleep time)
BEHAVIORAL (Somnolence)
BEHAVIORAL (Excitement)
GASTROINTESTINAL (Nasea or vomiting)
LIVER (Tumors)
KIDNEY, ureter, bladder (hematuria - blood in urine)
KIDNEY, ureter, bladder (other changes)
MATERNAL EFFECTS (uterus, cervix, vagina)
MATERNAL EFFECTS (Other effects on female)
EFFECTS ON FERTILITY (Pre-implantation mortality)
EFFECTS ON FERTILITY (Post-implantation mortality)
NUTRITIONAL AND GROSS METABOLIC (Weight loss or decreased weight gain)
NUTRITIONAL AND GROSS METABOLIC (Changes in: metabolic acidosis)
TUMORIGENIC (Carcinogenic by RTECS criteria)
TUMORIGENIC (Equivocal tumorigenic agent by RTECS criteria)

It's the 'tornado' chemical. Comes and goes quickly, but the devastation is horrific!

'retic ratio?'

Last edited by Dear Maggie; 09-03-2004 at 12:14 PM.

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