Diagnosis

[Want to feel well!!!]

Just wnated some insite... my neuro sees Epstein-Barr antibodies going a bit crazy in my system.   My EBV (IGg) titers were over 1600 last month and now they are over 1800, so he said I must feel very fatigued.  Normal levels are under 100.  He said, “At 150 I know a patient is tired, but you must be VERY tired.”    

The neuro said since my symptoms have been going on for so many years, it makes sense that when I get a cold it immediately turns into bronchitis or pneumonia.  He said my immune system has been suppressed for a long time, so he prescribed Amantadine to boost my immune system and to give me energy.  He warned me that I would be “wired.”  My reaction, “YEAH!”   He also warned me that if I caught a cold right now I would become extremely sick so I need to be careful…I have been careful all along, so I just have to continue to do so.  Hand wipes are my constant companion wherever I go.

Does anyone have any input on EBV antiboies and bringing them down?

Wanna

[Want to feel well!!!]

sorry for all the typos...

[PlateletGal]

Amantadine is used to treat Parkinson's disease and conditions similar to those of Parkinson's disease. It also is used to prevent and treat respiratory infections caused by influenza A virus.


http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682064.html

I'm wondering why your physician prescribed Amantadine ? There was a study done and Amantadine was "poorly tolerated" by CFS patients'.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=9018019&dopt=AbstractPlus

You may want to google "Dr. David Bell" + "Amantadine" and read the results of his research study with his patients' with CFS on this drug. Many patients' couldn't handle the side effects.

[Want to feel well!!!]

My neuro has not given me a diagnosis of CFS.  From what I am beginning to understand having high EBV titers does automatically not constitute CFS.  There are other things occurring with me, but the very high EBV titers are one.  He is trying the amantadine trying to boost my immune system because it is so suppressed.  He has warned me to try to not get sick, so I am being very cautious.

I was just curious about my high antibodies, and if anyone could relateto that.

Wanna

[PlateletGal]

Well good luck with the amantadine. I don't know much about using anti-virals to boost up your immune system, but I have had luck with homeopathy.

Let me know how it turns out for you, if you can.

[PlateletGal]

P.S. -- I used to catch every cold & flu bug that was going around and I used to bruise easily as well. But after my CFS symptoms got worse, I noticed that I no longer catch colds or flus. I'll feel it at first... but after that, my CFS symptoms kick in. I was happy to see that Dr. Mark Shaw wrote about this once. It all makes sense to me now.

[Want to feel well!!!]

Thanks for the info!

[Grailhunter]

I have Epstein and I can say the only time I have felt halfway well, with maybe 70 percent of what I would call normal energy levels, and the pain went away and the mental fog and lightheadedness finaly cleared was useing a product called GREENS PLUS.  I originaly started useing it for full on, hard core CFS to get some energy.  The old concrete blocks on my feet feeling where your so tired getting out of bed and all day you feel like your almost dead.  The Greens had a impact the first day on producing some energy, and took about 2 weeks before it leveled out.

Since then I have gone off it and on it several times and within a few weeks all the symptoms start returning.  Since then, I checked into it and the product seems to do allot more then provide high quality food and energy.  It seems to be a serious immune enhancer, liver detoxifier.  One of the things I picked up on reading the CFIDS site was referenceing a neurotoxin in CFIDS that attacks the liver and diminishes it function, and also attacks the nervous system once it builds up because the liver can't keep up with it, and then eventualy starts producing neuropathies.

Anyhow, I started taking the Greens again after finding out what all it is doing and I have to say I feel like it is once again reducing symptoms.  Pain is going down, fatigue diminishing, mental clarity going up.  I don't plan on going off this product again.  When reading why the product was engineered with the profile of ingredients it has, it was designed to be a immunity builder.

[PlateletGal]

I once tried a product called "Super Greens" and after using the product, I could tell that it was doing something because I had the detox symptoms. It was obviously clearing out toxins and IMO, was beneficial for my health.

Because I've had CFIDS for so long and because my illness started getting worse two years ago, I decided to do the Marshall Protocol.

[patsy10]

I wonder why he didn't put you on an antiviral medication for the high titers.  Also, my friend took Amantadine for the fatigue and could not tolerate the side-effects.  She wasn't wired but she said it took all her emotions away and made her apathetic.

[Grailhunter]

I am familiar with the ingredient profile on Super Greens.  It is similiar to Greens Plus.  Preaty strong.  Preaty much any of those Greens products will detox.  I used to think it was mainly colon detox but I found out I was wrong.  They are mainly working on clearing things the liver detoxes and cooling the overworked liver down, and the colon detox is kinda secondary.  Personaly, I am going to try to work the amount up on what I take.  Its so stimulating though it can be kinda tough to handle if your prone to nervousness and anxiety.  My past experience with it indicates there is a point where functionality increases to a level that the nervous system and brain gains will eventualy outweigh the effects of the negative sensations of the stimulation.  But its a hard point to get there because you start feeling better except your wired, so it can seem better to stop taking the stuff and get rid of the wired because the cleanseing and building effect will last for awhile.

At least that is my experience with the stuff and about the only solid thing I can really recommend that will build, stimulate, detox and help your immune system all in one thing.    

[Want to feel well!!!]

Amantadine is an antiviral, and it is the second antiviral I have been on.  So far I have not had any side effects which I had with the first one.

I am very pleased with my neuro so I am going to continue doing what he feels is the best direction.

Thanks for all your comments.


  

[kaznev]

Have you had your cortisol tested.  If it is low, it may show you might need to boost your adrenals as your adrenals may have become exhausted.  Cortisol is needed for myelin.  Myelin coats nerves.  So not only will your endocrine system be causing problems, so will your neuro system.  I found out that CFS and fibromyalgia are only symptoms from my doc., meaning its a list of symptoms that has been slapped with a name and not the cause of the problem.

[PlateletGal]

I've had my cortisol levels tested.

Ask your physician why so many CFS patients' have very low blood pressure (you may want to read Paul Cheney, Ph.D.'s research on CFS and heart problems), low uric acid levels (like MS patients') and orthostatic intolerance with tachycardia.

[Sandin]

I am new to this forum- so I'll introduce myself. I am 41 and I am actively in pursuit of some answers. I was diagnosed with West Nile Virus in late 2002. I developed congestive heart failure and had bells palsey, perforated eardrum, muscle degeneration and many other complication. I am a fighter and with faith and determination I can say that I was doing really well..(no longer have heart failure). until this past year 1/2. I have been so tired- yet I kept pushing myself - I can't seem to push anymore. I suffer from extreme fatigue, dizziness, headaches, I feel like I have the flu almost constantly- I feel like my skin is bruised if that makes since. I can't think and have trouble sometimes remembering things. My jaw pops and have pain in that area.My depression is bad and I just had some recent bouts of "panic attacks" while being in a car.I took a leave in June from work- I just couldn't seem to function. I over heard my sweet little boy tell a friend that his mommy is always tired and not feeling well. It broke my heart.
I have had so many tests- Do people with fibromyalgia have similarities in test results?

i was tested for lupus- ANA neg,
platelets-379- high
ferritin 10.6- low normal
PHT-11.9 Low
Calcium 10.4- high normal
ALP-30-low

had a bone scan, nerve conduction study- I am so confused and frustrated as I know these symptoms are real- Seeing a RA who ordered the above tests. My first appt. with her I lost it- I began crying (which I don't usually do because I don't want anyone to know just how much pain I'm in) I couldn't hardly stop. She probably thinks I'm a freak. I see her again next week and I am so would love to know what test I should suggest? or my next steps. i have search and read so many forums and you sound so knowledgable on the subjects of CFS and Fibro- can you give me any hope???

[PlateletGal]

"I suffer from extreme fatigue, dizziness, headaches, I feel like I have the flu almost constantly"

Hi Sandin,

These are classic symptoms of Chronic Fatigue Immune Dysfunction Syndrome. People w/ fibromyalgia tend to have more pain than fatigue. People with CFS (AKA: ME or CFIDS) tend to have more fatigue and flu-like symptoms.

I would recommend seeing a physician who knows how to diagnose and treat CFS and/or also rule out lyme disease.

[Sandin]

I am seeing a RA who does treat fibromyalgia- They thought at one point I had lupus but the ANA was negative. Do you have severe pain at times? My hands get real cold sometimes and turn either white or blueish.. Tested for carpal tunnel that was negative.Mostly am so exhausted-yet can't seem to sleep and if I do, I am still so tired upon arising. I just want to go back to bed. How do they diagnse CFS from Fibromyalgia? I've heard about the tender points-w/ Fibro. is there a similar test, or specific blood work that is universaly similar with paitents?
My lyme was negative, but I did have WNV in 2002- which has very close symptoms.
I thank God I found this site. I have been at a loss explaining how I feel to those around me- It has been easier since I took a leave of absence from work in June , but I have to go back next week. I feel alot of anxiety.......

[PlateletGal]

Hi Sandin,

I don't get the cold hands like you do. You may want to ask your RA about Raynaud's Disease and make sure that you don't have that. People with Raynaud's have a painful sensation of cold in their extremities (hands, fingers or toes). From what I understand, many people with Raynaud's Disease have another illness as well.

To rule out fibromyalgia, they should check your tender points. As far as a CFS diagnosis, they have to rule out many other conditions... mostly autoimmune diseases and lyme disease. You might want to check out the CFIDS Association of America website and take their online quiz, "Do I have CFIDS ?". CFIDS patients' (the really sick ones) often have low uric acid levels, low blood pressure and POTS (postural orthostatic tachycardia syndrome). 25% of CFIDS patients' have a positive ANA titer and also have "some" autoimmunity problems.

Here is Dr. David Bell's list of CFIDS symptoms and a rough estimate of the percentage of patients' who have each symptoms. I know when I first had CFIDS (undiagnosed for years), I originally started out with fatigue, headaches (severe), allergies, muscle aches and memory problems.

Fatigue or exhaustion 95 % *
Headache 90 % *
Malaise 80 % *
Short-term memory loss 80 % *
Muscle pain 75 % *
Difficulty concentrating 70 % *
Joint pain 65 % *
Depression 65 % *
Abdominal pain 60 % *
Lymph node pain 50 % *
Sore throat 50 % *
Lack of restful sleep 90 % *
Muscle weakness 30 % *
Bitter or metallic taste 25 %
Balance disturbance 30 %
Diarrhea 50 %
Constipation 40 %
Bloating 60 %
Panic attacks 30 %
Eye pain 30 %
Scratchiness in eyes 60 %
Blurring of vision 80 %
Double vision 10 % +
Sensitivity to bright lights 80 %
Numbness and/or tingling in extremities 60 %
Fainting spells 40 %
Light-headedness 75 %
Dizziness 30 %
Clumsiness 30 %
Insomnia 65 %
Fever or sensation of fever 85 %
Chills 30 % +
Night sweats 50 %
Weight gain 40 %
Allergies 60 %
Chemical sensitivities 25 %
Palpitations 55 %
Shortness of breath 30 %
Flushing rash of the face and cheeks 40 %
Swelling of the extremities or eyelids 20 % +
Burning on urination 20 %
Sexual dysfunction 20 %
Hair loss 20 %


Also, physicians' you may want to google who are the experts on CFS are Paul Cheney, Ph.D. --- David Bell, M.D. --- Garth Nicholson, Ph.D. --- Mark Shaw, M.D. (I believe he has CFS and fibro) and Richard Podell, M.D., M.P.H.

http://www.cdc.gov/cfs/cfsbasicfacts.htm

[Sandin]

Thank you so much- Your insight is amazing. I've realized that i need to be more proactive in my research of my symptoms as I've read many people have struggled for years with this horribly, dibilitating disease-
Wow- it was a bit scary to read all those symptoms as I have all but the swelling of eyelids-
Did they test you with everything under the sun before they found this in your case? Were any of your RA, Sed Rate, CPK, CRP test elevated- mine aren't showing no inflammation , although my limbs feel so heavy.
I had a nerve conduction test to rule out carpal tunnel for the cold/ ashy hands- Not carpal tunnel- I will look at the Raynauds you mentioned.

[PlateletGal]

"Did they test you with everything under the sun before they found this in your case? Were any of your RA, Sed Rate, CPK, CRP test elevated- mine aren't showing no inflammation"

Hi Sandin,

Usually CFS patients' have a low sed rate and I did for many years. I believe I've had CFS since I had a severe case of mono when I was only a teenager. I kept telling everyone that it was like I had never recovered and was sick frequently afterwards, but physicians' were unable to diagnose me for years.

A couple of years ago, I noticed that my sed rate was getting higher, but still within normal limits. However, my CRP was high and that indicated inflammation. I'm now on a research protocol --- called the Marshall Protocol to treat this condition.

[Sandin]

Nurse called- everything with my nerve study normal- How did I know they'd say that. Part of me is relieved while the other is suffering.
I had to have heading pads on both of my arms for almost 2 days due to the pain it seemed to cause in my arms.. Oh well...what now?
I'm sorry to hear that you have suffered with this for many years.Is your course of treatment homapathic? I have no inflammation but it feels like I should. This all seemed to get worse after I had a real bad case of plerisy in Nov.- I just lost all steam. I have an appt. with my RA on Monday and I really don't even know what questions to ask her or what additional test- I don't want to sit by idle.
Any recomendations?

[PlateletGal]

Hi Sandin,

Studies have shown that alternative medicine has been very beneficial to CFS patients' --- even more beneficial than western medicine. I know that this has been the case for me. In my case, an acupuncturist / homeopathic practitioner who did BioMeridian testing helped me a great deal. However, this testing is very expensive and although I had been treated for over a year, I relapsed a few years later. The Marshall Protocol involves using small doses of antibiotics to kill the bacteria in my system that is causing the immune dysfunction and making me so ill. They have a website if you want to check it out. It is a research protocol, but the medications are NOT research medications and any physician can prescribe it. However, you may want to consider going the alternative medicine route first... if you have the money to do so or check online for Dr. Paul Cheney's treatment of CFS --- or Dr. Jacob Teitelbaum's treatment of CFS.

[PlateletGal]

P.S. --- Remember if you get a diagnosis (whatever the diagnosis may be), to always keep your health insurance. If you let your health insurance lapse, even for a day or two, then chances are you will lose your coverage.

[Sandin]

Great advice- Thanks!!

[PlateletGal]

You bet ! Good luck !