Well I have not been here much been to tired to even turn on pc. Been sleeping up to 16 hours at a time never waking up. When I do get up it is straight to couch. I know there is good times and bad but these last 2 weeks have been so bad. Taken a bath is even hard I get out of shower and have to lay down. Another big problem I have is really bad pain in my muscles in my legs. Dr told me this is normal with CFS but here is problem. Last month when blood work was ran liver count was high. So I just take the pain knowing any thing was pain can run liver counts up. On the 29 is next work work day. So maybe we will know more then. Last month EBV and CMV counts were really high. This been going on for 18 months now. Only 1 month about 6 months ago the counts had went down a small amount. Well I know that just because I am having a good day I dont need to over do it. Going to get off here and ride my bike a few blocks hope it dont knock me out for 2 or 3 days. Hope all is well with everyone. I keep yall in my thoughts and prayers. Carrie
“In your profile, you have suffered with hormome problems, correct?”
Yes… I have polycystic ovarian syndrome also called Stein-Leventhal Syndrome which affects estrogen (gives excess), androgen (gives excess which causes male like hair pattern growth). I guess I dont produce thou enough of the hormone in which is responsible for an ova to be released easily each month. PCOS also causes problems with other hormonal systems in body too eg insulin eg Ive got 50% chance of getting diabetes or insulin resistance cause of it and also causes problems with the system which deals with cholestrol.
CFS is known to worsen hormonal problems and affect them as CFS can affect ALL the body systems including endocrine hence hormonal problems can be a symptom of CFS. My hormonal problems have been much worse since I got CFS.
"Mine is premature ovarian failure and I wonder if there is a link to add to our fatigue with a hormone defficiency. "
As far as I know, CFS has never been able to be corrected by giving hormones. Pity it isnt, wouldnt an easy solution be great.
"What stress caused your relapse? "
I actually had two, a relapse upon another relapse which happened several mths before that.
The first was due to a government dept harrassing me and threatening me with things, wanting me to work differently etc than I was able to at the time and hence my pacing, the way I kept myself well and from getting sick again, went out of the window. They actually one time interrogated me and I had the threat of if I walked out on them, the little amount of money I was getting from them to supplement my earnings would be cut.
They forced me to do things and stressed me out heaps, when I should of rested. I had been working full time most of the time, but cause of the stress of them, my health then fell to a point in which I could only work for about 5 hrs per day.
I could of recovered from the above relapse after 3-4 mths if the second relapse hadnt happened.
With the second one, it was due to the male in my life, a new boyfriend giving me an extremely hard time with his expectations of me and what he wanted me to do, he wasnt listening that I was sick and needing some time to recover. (He wanted me to work hard and go and immigrate over to where he is). By the time I broke up with him, cause he was making me sicker cause I tried hard to do what he wanted, it was too late, I’d majorly further relapsed. By this time I could only work at the most 2-3 days a week and only 1-1.5 hrs at a time per day. Im still not much better than that… only slightly. Also the factor that I went and got another job which turned out to be unsuitable for one with CFS, also made me further relapse.
(I have now half got back with that same one I had to break off from, but he now realises I are sick and cant work. I still do worry about whether he really realises just how sick I now are. If he starts making me iller again, I’ll have to leave the relationship again).
If left to my own devices and not pushed by others, I do well and start to recover (Thou its one long long process). Ive fully recovered completely before by my pacing and resting when I needed, and believe I could do so again, if I could avoid stress and others making my do more than I know my body can currently handle. By not overdoing things and hence bringing on CFS symptoms… my body seems to work at recovery and I start being able to do more and more without relapsing.
“My husband’s sister died the night before Thanksgiving which was the final straw of the worst year of my life in 2006.”
(((hugs))) I just hate those stressors which we can do nothing about but can cause relapse.
"Right now I am reading the Secret. It is some amazing stuff and I am going to apply it to my life. "
I havent read the book but thought that film was great 
"On Monday, I am having a consult for pro-lotherapy on my back. I have read a lot about this but was curious if you heard of this? "
Nope… that is something I have never heard of. Best luck with it.
Hi Carrie. I am in the same boat as you. I hate living this way. I too had high counts in my EBV but my doctor said it was like mono. I had just about every bug that is going around right now. I hope you have better days ahead!
oh… the mind fog just got me… I just pressed back before I posted my post to you, so lost it all and have to start again … feeling frustrated now
…
sorry to hear that you are doing so poorly, I wish I could give you a big hug…
" I have is really bad pain in my muscles in my legs. Dr told me this is normal with CFS but here is problem. Last month when blood work was ran liver count was high. So I just take the pain knowing any thing was pain can run liver counts up. "
Yes pain in your muscles is common with CFS, actually pain EVERYWHERE is also common with CFS and I hope you dont get to that point.
You probably just have the pain only in your legs as they are the body part you are using more, hence getting worked more. If you use the other body parts more, you probably will find you get pain in those too. The leg pain I would see that as saying to you, that you are using your legs too much.
I had ended up having problems with my liver too through out the first year I had CFS (till the symptoms improved a lot). I wasnt even on medications, choosing to suffer majorly instead cause Im into natural health so hence didnt believe in taking drugs, but still got liver problems!!! My liver problems started to get bad enough to concern my doctor at one point. (I too had EBV but many years before… and tested positive thou without high tiers, for CMV too). (There is a subgroup of CFSers who have had both EBV and CMV and which may have them reactiviting). Really consider my suggestion of getting hold of and try taking “transfer factors” to help your body fight that EBV. You can buy it online (make sure you get the one for EBV).
All the drugs you are on, your liver has to work harder to break them down and hence liver problem is more likely.
“Going to get off here and ride my bike a few blocks hope it dont knock me out for 2 or 3 days.”
Sounds like you dont know your limits yet… and that dont help one to recover from CFS and you’ll keep crashing and burning.
Try to err on the side of caution, its better to do a little less in a day, than go wiping oneself out for days, by doing less with this, one can actually build their energy levels up and also have ones health improve. AVOID DOING ANYTHING WHICH MAKES YOU FEEL WORST OR BRINGS IN WORST SYMPTOMS JUST AFTER… you want to be working yourself towards wellness… not relapsing further, which takes you further and further away from the goal of getting well. If you do less… over time you may find you need less sleep.
As far as exercise goes… the latest studies are showing that there is abnormally high amounts of lactic acid in CFSers. Lactic acid is produced when one exercises and causes body aches and pains. One recent study found over 300 times!!! the normal amount of lactic acid in the CFSers compared to the control group. Im not sure if lactate acid can damage the body or not??
but there was a CFSer who got PERMANENT muscle damage (it could be seen in the tests) after exercise. Of course her doctor wasnt willing to say it was from the CFS and exercise and instead put it down to “unknown causes” as the doctor couldnt find a cause…but she said she was certain herself it was as she’d pushed herself to exercise and that had happened during it and it never improved again. (she lost use of it… i cant remember now what body part it was… but I think it was her arm from what I remember).
best luck with things…
So then I DO have mono even though the mono spot was negative? Thanks for the info!
Sandy I dont know how those tests work. You may need to ask your doctor to explain it more… to explain how your mono test is negative when you have high levels of EBV… (when EBV causes mono).
umm unless that mono test only shows when one is first affected and doesnt show up for reactived EBV??? I dont know how they tell the difference between an original infection and a reactived one.
Does anyone here know??? If so could someone please explain…
i just tried to research for an answer and found the following.
http://www.labtestsonline.org/understanding/analytes/mono/test.html
“If the mono test is initially negative but the doctor still suspects mono, he may order a repeat test in a week or so to see if heterophile antibodies have developed and/or order EBV antibodies to help confirm or rule out the presence of a current EBV infection.”
"What does the test result mean?
If a patient has a positive mono test, an increased number of white blood cells, reactive lymphocytes, and symptoms of mononucleosis, then they will be diagnosed with infectious mononucleosis. If symptoms and reactive lymphocytes are present but the mono test is negative, then it may be too early to detect the heterophile antibodies or the affected patient may be in the small number of people who do not make heterophile antibodies. Other EBV antibodies and/or a repeat mono test may be performed to help confirm or rule out the mononucleosis diagnosis.
Most infants and young children will not make heterophile antibodies, so they will have negative mono tests even when infected with EBV. This population is rarely tested, however, because they do not usually have symptoms of infectious mononucleosis. "
So the negative mono test must mean that you are not making the antibodies (as that is what it looks for)…thou you have high levels of the EBV.
What does this have to do with CFID’s? So far I see information about cancer, aids etc. Just curious!
What is EBV and CMV. My blood work is norman but I have liver problems in other ways…long story
EBV is epstien barr virus, and CMV is cytomegalovirus .
hope this answers your question ,i had very high titers to
EBV in my early years of CFS now all are normal
don
Don, yours are down? Mine are still elevated andhave been for over 12 years. I am seeing a doctor who specializes in this MP on MArch 26, 2007. I shall see what he says!
Jennysue… If you have liver problems I really advise that you dont try out the Marshall protocol as it is only an experimental treatment, (from what Ive heard, they keep on extending out that time in which they say people need to be on the antibotics. Its all still just trial. They really dont know I dont think. I think it started out originally as 1 yr? treatment, then 2 yrs… and Ive heard now that many have been told 3 yrs on the antibiotics …and it dont guarentee either that the CFS wont come back).
It also does have an extremely high rate of things going wrong with it, many have developed permanent problems, serious side affects.
It is very possible those on it may feel better some cause its killing off pathagens, but is it really fixing the underlying cause of whatever has gone wrong in our bodies in the first place???
It isnt proved at all that pathagens alone cause CFS (they've really looked long and hard at that idea), in fact I think that theory has been discounted for the actual cause, thou of cause pathagens often play a part in our faulty systems. The pathagens may of damaged our immune system in ways that by just getting rid of the pathagens, may not necessarily mean that our systems are going to correct themselves along with the problem which may of allowed those pathagens to take such a hold in the first place.
(I wish I could find the site again for the experiemental CFS treatments, where people who have been on it rated how well it worked and rated the side affects. Im sure I remember reading somewhere that a lot of the people on it ended up developing Addisons disease on top of the CFS which they had already).
Dangerous experiemental drug treatments (unproven and still developing and being tested on those willing to try basically anything), I personally think are a good to try for those who dont have liver problems and have had CFS for a very long time ,with it severe enough to be majorally affecting ones life and have run out of other safer things to try. In those of us like that, we really dont feel like we have much to loose at trying something.
Maybe something like Marshall protocol would be very valuable to someone like Sandy if it also targets that EBV (whether the EBV is causing her CFS or not… active EBV would be affecting her health).
What a long post just to say that I dont think every CFSer should go and try something like the Marshall protocol.
Actually I have sleep apnea, chronic EBV (which by the way your site helped), Chronic Fatigue Syndrome, SI instability or in lay terms, backpain, hormone imbalances and I hope that is it. I am very scared about this protocol because you are right, expereimental drugs and side effects can be bad. Also, people with CFID’s are VERY sensitve to medications and that is WHY I am bit apprenhensive about this protocol. I hope this doctor understands all there is about CFID’s and I am doing extensive research on this protocol myself.
Sandy… Ive been researching for you in my attempts to find the CFS experimental treatments result survey Ive read in the past, as without you seeing that for yourself, I believe you are not really making a fully informed decsion.
Anyway… so far Ive come up with this
http://lassesen.com/cfids/advised_reading.htm
(this ties in with what I saw posted by quite a few people who developed Addisons while on Marshall protocol.
Ive also gone and read the Marshall site now too… and note that its clear that they’ve avoided posting what one needs to be watching out for (eg the serious life threatening symptoms of the things Marshall protocol can cause while on it). It seems they are trying to give everyone all the good, while hiding the bad.
I personally thou from what I read in the survey in the past, know the Marshall protocol did help some with CFS greatly as there was some who had listed that it had actualy cured them. (thou it didnt say at all how long they’d been free from CFS since doing it… but the ones who felt they were worst off for doing it or thought it hadnt helped them… were more than those who said it helped).
I also saw some posts at the Marshall site from someone who appeared very sensible and seemed quite into it and was on it, then note that later on they’ve been blocked, (or cancelled their accout with the site). I wonder why when I see things like that. I guess something must of happened this didnt seem to be a person who would of gone and done anything wrong at the site… except maybe tell about whatever they were experiencing.
(((((((((((Hugs to Taniaaust)))))))) I was in tears to think you thought I bit your head off. Men can be jerks, believe me I know. I hope you have a better year ahead. I too get relapses and mine are more closer then feeling better. But I plan to work on that by learning to pace. Have a great day!