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-   -   Do i have Chronic Fatigue and not Lyme disease? (http://www.healthboards.com/boards/chronic-fatigue/274233-do-i-have-chronic-fatigue-not-lyme-disease.html)

sleepygonzales 04-14-2005 03:22 PM

Do i have Chronic Fatigue and not Lyme disease?
 
Hello CFS forum!

I am 23 years old and have had symptoms since i was 12 years old
I have been tested negative for Lyme Disease with the ELISA test. And the doctor i talked with thought i have Chronic Fatigue so now im posting my symtoms here..

I have read a list of symptoms on a lyme disease site and copied the ones i have..

Symptoms i got at age 12 that haven't gone away:
Fatigue/Malaise/Lethargy
Swollen glands in the neck
Neck stiffness
Drooping eyelid
Photophobia, oversensitivity to light
Clumsiness or coordination difficulties
Sleep disturbances
Concentration difficulties

Symptoms that went away after 6 months only to recur at age 16:
Blurry vision
Visual acuity decreased
Dizziness
“Brain fog”
Disconnected feeling

-----
Symptoms i got at age 16:
Blurry vision
Visual acuity decreased
Dizziness
“Brain fog”
Disconnected feeling
Tinnitus
Twitching of facial or other muscles
Floaters
Visual acuity decreased
Backache, back pain,(when i go to bed and lay down i allways have a pain in the lower back)
Abdominal distention
Urinary problems, Irritable bladder; trouble starting/stopping; frequent urination; voiding dysfunction.
Chest pain (short stabbing pains lasting only seconds)
Pseudotumor cerebri, pressure in head
Vertigo, The sensation of dizziness. A confused, disoriented state of mind.
Walking – difficulty/ataxia
Anxiety
Depression
Emotional lability (overly emotional reactions)
Irritability
Mood changes
Nightmares
Panic attacks/panic disorder (have only had panic disorders)
Rage or violent outbursts

-----
Symptoms i got at age 22:
Fever (for just a few minutes, unless i go for a walk in wich case it lasts much longer)
Paranoia
Confusion
Memory impairment/word retrieval difficulties
Hair loss (alopecia)

-----
Symptoms i have that are not listed on the site:
acne
sweathy cold feet
cold hands
heavy and high pulse without any exercise
dry eyes
sensitivity to alcohol

CFD 333 04-15-2005 09:36 AM

Re: Do i have Chronic Fatigue and not Lyme disease?
 
Sleepygonzales, how are you...we spoke before on the Lyme Disease forum. I've looked over your list of symptoms and it looks to me like there is a chance you might have Chronic Fatigue Syndrome and not Lyme Disease. Let me ask you a couple questions...

When you first became ill, did it occur very suddenly with flu like symptoms or did it take a long period of time to develop?

I noticed that you have listed malaise/lethary/fatigue as some of your symptoms. Do you also have "post-exertional malaise" meaning does your fatigue and malaise increase dramatically after physical activity/exercise/difficult mental tasks/stressful events?

Do you have peculair sensitivities to medications/herbs/caffeine? Not necessarily allergic reactions but do you find that the side effects are greatly exaggerated?

Have you seen a neurologist and/or had an MRI done to rule out Multiple Sclerosis or any other brain abnormality?

Have you had your Thyroid and other hormone levels checked?

Have you been tested for other infections like EBV and HIV?

Have you had a sleep study done and/or do you take sleeping pills?

Were your doctors able to rule out Depression/Anxiety as your primary diagnosis meaning that your illness isn't only psychological in nature?

Thanks, all this information will definitely help me...

lodoka 04-15-2005 12:32 PM

Re: Do i have Chronic Fatigue and not Lyme disease?
 
HIV, no way, you would of known by know.

Please tell me what type of test have you done ? Tell me about your immun system ?

How is your NK cell and Cytokons (Sp ? ) are doing ?

Oxytoines Cell ?

Have you done any immunes sytem test ?

Have you checked for EBV, CMV, HHV 6, Mycoplasma ?

sleepygonzales 04-16-2005 02:05 PM

Re: Do i have Chronic Fatigue and not Lyme disease?
 
[QUOTE=lodoka]HIV, no way, you would of known by know.

Please tell me what type of test have you done ? Tell me about your immun system ?

How is your NK cell and Cytokons (Sp ? ) are doing ?

Oxytoines Cell ?

Have you done any immunes sytem test ?

Have you checked for EBV, CMV, HHV 6, Mycoplasma ?[/QUOTE]

i have no idea what you are talking about :confused:

i have taken a bunch of "standard blood tests" but have no idea what kind.. all were normal ofcourse..

CFD 333 04-16-2005 02:35 PM

Re: Do i have Chronic Fatigue and not Lyme disease?
 
Sleepygonzales, the purpose of asking those questions is to really help make sure that you have ruled out all other possible illnesses you may have. I feel that it is a great idea to have been tested for almost every possible cause for your symptoms before you would settle on a Chronic Fatigue Syndrome/Chronic Lyme Disease diagnosis and leave it at that.

This includes making sure that you don't have any primary sleep abnormality (as a sleep study would detect), abnormal brain growths or functioning (as would an MRI and/or SPECT brain scan would be able to detect), any other possible infections, abnormal hormone levels (as would a series of specific blood tests could detect), or heart defect or abnormality (as would an EKG would be able to detect). If you can eliminate all of these things, it will go a long way to aid in your diagnosis so that it can be treated properly. I hope this helps you some...ask me if you have any specific questions...

CFD 333 04-17-2005 11:19 AM

Re: Do i have Chronic Fatigue and not Lyme disease?
 
[QUOTE=sleepygonzales]i have done EKG and EEG a few years ago..
could you tell me what MRI and SPECT brain scan is? is it like an x-ray? i live in sweden so i need to translate all these terms to swedish before talking to a doctor, could you tell me what MRI, EBV and CFIDS stands for?
also what do you make of my answers to your first three questions? does any of my answers make it more likely i have chronic fatigue?

thank you[/QUOTE]

Well, in my honest opinion, I would say that your answers definitely look like you could be suffering from Chronic Fatigue Syndrome or something like it. Thats not to say that you definitely have it, but the fact that so many doctors have examined you and ran so many tests on you over so many years and still came up with nothing is a good indication that either a.) you have an illness that standard medicine cannot detect yet or b.) not all possible options have been eliminated yet. If you have all the tests I mentioned in my earlier post and more done and everything still looks normal, then I'm afraid there may not be any other option available for you than a Chronic Fatigue Syndrome diagnosis.

MRI stands for Magnetic Resonance Imaging. It is a very detailed scan of the brain that resembles an x-ray but it shows all the physical characteristics of the brain itself. This is useful to determine if anything is organically or physically abnormal about your brain such as lesions or tumors.

SPECT stands for Single-Photon Emission Computerized Tomography. It is primarily used to view how blood flows through arteries and veins in the brain and can detect reduced blood flow to injured sites.

These tests could be a useful tools in helping someone with suspected Chronic Fatigue Syndrome or Lyme Disease because it can help rule out the possibilities of actually suffering from another illness such as Depression, Multiple Sclerosis, or Alzheimers Disease.

EBV stands for Epstein Barr Virus. This virus is responsible for the disease known as Infectious Mononucleosis or what is commonly refered to as "Mono" or "The Kissing Disease". The illness is characterized by a extreme fatigue, fever, sore throat, and swollen lymph glands. Sometimes, a swollen spleen or liver involvement may develop. Heart problems or involvement of the central nervous system occurs sometimes but is rare. It is good to get checked for this because most people that develop Chronic Fatigue Syndrome often recall a day where they supposidly "got the flu" and then never recovered from it. It is believed that EBV could be one of many potential pathogens that may initially cause Chronic Fatigue Syndrome to set into place and the illness doesn't resolve even after it has been erradicated.

And finally, CFIDS stands for Chronic Fatigue And Immune Dysfunction Syndrome. Its basically another name for Chronic Fatigue Syndrome (CFS)but many researchers and medical professionals prefer to use the name CFIDS because it is believed that an immune system dysfunction is at the heart of the illness and the cause of the symptoms. In fact, most of the research now being presented does indeed point to an extremely complicated immune system abnomality which was most likely set in motion from a previous and sometimes unknown infection. You can read all about this if you research the latest drug being tested for this illness, Ampligen. It has been specifically designed to correct this immune system dysfunction and is showing a lot of promise in early trials. It has not been approved for use in the United States yet but could be out sometime within the next 2-3 years.

deejavu 04-19-2005 06:08 AM

Re: Do i have Chronic Fatigue and not Lyme disease?
 
Sorry, Ampligen was not "specifically designed" to correct CFIDS though it is being tested in clinical trials for CFIDS.

Ampligen has been used for people with Cancer and for AIDS sufferers.

After reading much about Ampligen, most people who tried this drug in clinical trials for CFIDS, ended up much worse before they started it.

Interesting, I read that CFS and AIDS sufferers have many of the same symptoms, including HHV-6 (Human Herpes Virus 6).

Ampligen has been around since the early 1980's.

CFD 333 04-19-2005 11:21 AM

Re: Do i have Chronic Fatigue and not Lyme disease?
 
[QUOTE=deejavu]Sorry, Ampligen was not "specifically designed" to correct CFIDS though it is being tested in clinical trials for CFIDS.

Ampligen has been used for people with Cancer and for AIDS sufferers.

After reading much about Ampligen, most people who tried this drug in clinical trials for CFIDS, ended up much worse before they started it.

Interesting, I read that CFS and AIDS sufferers have many of the same symptoms, including HHV-6 (Human Herpes Virus 6).

Ampligen has been around since the early 1980's.[/QUOTE]

I NEVER stated it was designed originally to correct CFIDS...don't misquote me. What I actually said was it was specifically designed to correct the immune dysfunction that happens to be involved in CFIDS...a dysfunction of the antiviral pathway, 2-5A Synthetase/RNase L pathway, which appears downregulated in AIDS patients but it appears upregulated in CFIDS patients. The original intention was to correct this antiviral dysfunction in AIDS patients with the drug Ampligen. Just so happened that CFIDS and AIDS have an antiviral dysfunction in common so Ampligen, a drug that can modulate this abnormality and "normalize" it, was tried as a possible treatment/cure for CFIDS patients and with some amazing results so far.

A word about Ampligen and AIDS...The results with this drug for AIDS patients were promising back in 1987, but the drug was shelved due to several reasons, none of them being its lack of effectiveness. Apparently there has been a lot of red tape surrounding its FDA approval for years and its manufacturer was partly to blame for that. Thankfully, it is making a huge comback for CFIDS patients and hopefully we can see an approval date within the next 2-3 years.


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