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Old 07-18-2008, 07:55 AM   #1
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Mono, Then CFS, now a little sun makes me sick for days?

Hello,
I had Mono (very mild case, just wooziness, fatigue) in April. The wooziness + fatigue never went away, ended up seeing 8 docs, 6 rounds of blood tests, MRI, etc, no diagnosis. I suppose I'm operating in a post viral/ chronic fatigue realm. With a ton of excercise (finally well enough to do it), I'm getting A LOT better, which is great. One thing, even 20 minutes of sun sets be back BIG TIME! I was in the sun for 30 minutes yesterday @ 4pm with a BIG hat on covering my neck + face, and from there I feel like my head, face, neck all feels sick - swirling, dizzy, sight pins + needles. A couple times before this happened during my illness - 20 minutes of sun exposure can take me out for 2-3 days! Is this common with CFS? Some sort of autoimnune issue? (plenty hydrated, supplements, etc btw) Thank you!!

 
Old 07-18-2008, 09:47 AM   #2
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lojo222 HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

I'm not sure what causes this but I caught Mono in December 06 and I had it bad and I have been sick since then. The one thing I have noticed is my extreme intolerance to heat. Any heat at all makes me feels very sick. I can't even take a warm shower and I have to leave the shower door open or the steam will make it too warm. I have noticed a few others who have heat intolerance. I think the that virus affects our nervous systems and I think it causes all the pins and needles and the hot and cold flashes too.

 
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Old 07-19-2008, 04:56 PM   #3
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Re: Mono, Then CFS, now a little sun makes me sick for days?

Hey, thanks for responding!
I have a question for you. What are your symptoms now? Do you think you have Chronic fatigue syndrome? I was just reading about it, and learning about stress + anxiety and how it can create a feedback loop and keep you sick. Just curious if you're were/are a high(er) anxiety person... If so check out the Gupta Programme on youtube - interesting stuff!

Best,
Michael

 
Old 07-23-2008, 07:45 PM   #4
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silkspider HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

I had mono 37 years ago and now I still get sick at least once a year for a month or so; symptoms are milder, fever, congestion, phlegm, fatigue. now at 66 yrs old, I can't get rid of the fatigue and mild congestion.

 
Old 08-01-2008, 04:12 PM   #5
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carisa HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

I've had mono three times in the past 8 years. I am sensitive to the sun and heat as well. It makes me very tired and fatiqued.

 
Old 08-02-2008, 08:27 AM   #6
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Re: Mono, Then CFS, now a little sun makes me sick for days?

Hey mike, it's funny you brought up the anxiety issue. I have had a life long anxiety issue. I had anxiety since I was a child and it peaked when I hit my thirtys and had my first "panic attack" and ended up in the ER thinking I was dying. I fought it and thought it was gone. The very first symptoms I had when I caught Mono was anxiety. I had terrible anxiety out of the blue for no reason. I went to the doctor and he thought I was depressed and anxious and gave me celexa, which made me feel much worse. I was already so fatigued and sick I couldn't function. So many people I have talked to with EBV say they have a strange kind of anxious feeling that comes with it. I have terrible shakes and tremors and wonder if it affects the nervous system and those of us who are more prone to anxiety are more affected by it. The anxiety has gone away for the most part now. I am 20 months into this and I am getting better. If I over do things. I pay for it. I am always tired and dizzy and woozy like you described. I can go out now and go to the store, but I have to rest allot when I get back and I am still not able to work. I definetly think the anxiety I had in the beginning helped make me even more sick than I would have been. I think it drains you. I am still confused about the whole CFS thing. I guess unless my doctor tells me that is what it is, then I will continue to think I only have a virus that will eventually go away. I will check out that programme you talked about. Thanks

 
Old 08-03-2008, 07:00 AM   #7
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gravenstein HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

Hello lojo222,

I am new to this site but I wanted to pass along my own experience to you and anyone else that I may be able to help. I have been feeling very ill, like I had the flu for over two years and I had many other issues on and off before that; most of my life, I would say. I would break out in major sweats and have real issues with temperature, being hot or chilled most of the time. I felt like my thermostat was really haywire. I had gotten to the point where I had major brain fog and continuous equilibrium problems making it very hard to function at all. I began to think that maybe I had MS but I couldn't get a solid diagnosis from any doctor I visited. (Over nine in the past 18 months). A friend of mine recommended another doctor who might be able to help me so I went to see her.

She looked at me and said, "After reading your medical history and your family history,
I can tell you that you are a canary". Well, miners took canaries into the mines to make sure there was enough oxygen to survive. If the canary didn't make it, the miners knew that they should not be there. It was my doctor's suspicion that I had chronic neuro toxin disease and probably have had it most of my life. This is something that has been around for a long time but has just been realized by a few doctors in the last ten years. The other thing she told me was that there is a genetic link to neurotoxin disease.

Well, I wasn't sure that I understood but after going to the lab and giving them 11 vials of blood for the numerous tests that my doctor ordered, she called and confirmed her suspicions were correct. It seems that people with chronic neurotoxin disease have been found to all have one abnormal chromosone. Well, I have two abnormal chromosones. The doctor seemed a little surprised herself. I was also found to have very high levels of Epstein-Barr in my system.

The doctor told me that I was full of inflamation and that was causing my brain to not fire correctly which was causing the equilibrium problems and brain fog I was experiencing. She put me on an inexpensive drug therapy and within a few days, I really started feeling better. Amazing to me after being ill for so many years. It seems that neurotoxins don't go away once you have them in your system without some help.

Chronic neurotoxins are all around us in the air, water and soil. Some folks are much more sensitive their environment than others, but you might call us the people who are sounding the alarm first. That's why we are canaries. When you start reading about neurotoxins and what they are doing to our wildlife, it is scary.

The medical society doesn't seem to have any information about neurotoxins or they just don't really want to accept the fact that this is gonna be a major thing to contend with in our future. Many folks have been misdiagnosed with Lupus, Fibromyalgia and even Manic Depression when they are truly suffering from chronic neurotoxin disease.

All I know is that for most of my life, I have never felt very good and now I am able to function and participate in life and getting better every day. I am still concerned about the high levels of Epstein-Barr in my system. Some doctors will say that it just means I have had mono in my past. Epstein-Barr is, afterall, one of the most common viruses in the world and most people have it in their systems. But when it gets to high levels, it has a tendency to be connected to MS and to Lymphoma, neither of which I want.

I hope my story can shed some light on your health issues and will give you hope. I know what it is like to not be able to get resolution or validation for health issues. Please know that if I can answer any questions to help you, I would be happy to do that. The important thing is, don't give up. No matter what any doctor tells you, if you aren't sure, ask questions and if they don't like you asking questions, find yourself another doctor who appreciates you wanting to be proactive with your heath. Don't get discouraged because there if an answer.

Take care and good luck,

Gravenstein

 
Old 08-03-2008, 09:01 AM   #8
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lojo222 HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

Very interesting, Gravenstein, It certainly makes you wonder. I wish I had a doctor who was as thorough as yours.

 
Old 08-04-2008, 07:00 PM   #9
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Re: Mono, Then CFS, now a little sun makes me sick for days?

wow,
that's a very interesting story. Thank you for sharing. My father has acute chemical sensitivity which results in really bad asthma. Can you tell me what kind of tests specifically you ran to determine this diagnosis? If so I can get them done.

Also, lojo, you mentioned that you have a lot of wooziness, it's been so weird but I've had it for months. I'm excercising a lot now which really helps keep my wooziness + weird head / face aches to a minimum, but the sun is such a killer for me. Has that lessened at all?

It's a real bummer, I'm missing out on this whole summer (i'm 4 months into this thing)

Michael

 
Old 08-04-2008, 08:53 PM   #10
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lojo222 HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

actually I was out the other day for a little while and it was pretty hot and the sun didnt' seem to bother me much. I hope its going away. I miss having that summer glow. I feel like I have been in a cave for the past year and a half!

 
Old 08-05-2008, 10:43 AM   #11
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silkspider HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

Quote:
Originally Posted by mikepilz View Post
Hello,
I had Mono (very mild case, just wooziness, fatigue) in April. The wooziness + fatigue never went away, ended up seeing 8 docs, 6 rounds of blood tests, MRI, etc, no diagnosis. I suppose I'm operating in a post viral/ chronic fatigue realm. With a ton of excercise (finally well enough to do it), I'm getting A LOT better, which is great. One thing, even 20 minutes of sun sets be back BIG TIME! I was in the sun for 30 minutes yesterday @ 4pm with a BIG hat on covering my neck + face, and from there I feel like my head, face, neck all feels sick - swirling, dizzy, sight pins + needles. A couple times before this happened during my illness - 20 minutes of sun exposure can take me out for 2-3 days! Is this common with CFS? Some sort of autoimnune issue? (plenty hydrated, supplements, etc btw) Thank you!!

 
Old 08-05-2008, 10:47 AM   #12
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silkspider HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

Hi:
I don't have sun intolerance, but I ve been chronically fatigued, Mono like symtoms for years. I tried IM gamma globulin several times and it seemed to help. 5 ml in each buttock. anyone else use GG?

 
Old 08-05-2008, 03:25 PM   #13
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lojo222 HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

you said it helped (the Gamma Globulin), did it eventually stop helping? Is that why you had to use it several times? How did it affect you and how long did the affects last? It's something I have been curious about but have never tried. I am ready to try just about anything now.

 
Old 08-05-2008, 10:08 PM   #14
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silkspider HB User
Re: Mono, Then CFS, now a little sun makes me sick for days?

I just used gamma Globulin once, 10 ml total and I got better. I'd get sick 6 months later, and I'd use GG again just once. I did this maybe a dozen times in the last 35 years.
I hope this info helps. Its hard to find a MD that will prescribe it however. that may be your biggest hurdle.

 
Old 08-06-2008, 07:02 AM   #15
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Re: Mono, Then CFS, now a little sun makes me sick for days?

thanks for the info. I think you are right. My doctor seems to think this will just go away on it's own and is very passive about treatment. He only wants to prescribe antidepressants. They make me feel worse. Maybe time to find a new doctor.

 
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