Those who started off with "flu" symptoms

Discussion in 'Fibromyalgia Main Forum' started by ktp812, Aug 28, 2009.

  1. ktp812

    ktp812 New Member

    I believe I got CFS after my 24 hour flu back in November 2004. I was wondering what flu symptoms did any of you have if yours also began after a flu.

    I only had chills, fever of 102, headache and the worse backache ever experienced. Then within 24 hours it was gone. 5 days later I had the exact same symptoms for only 24 hours and then it went away again. I did not have terrible fatigue during the flu, just tiredness from the chills etc. But that went away too.

    I had a blood test the day after my second flu and I had high sed rate, high crp, high liver enzymes and low wbc. So the doctor told me it was viral. Within 2 weeks the blood test was back to normal but the exhaustion/fatigue had begun.

    One doctor told me viral and the other told me bacterial so I am wondering what your flu symptoms were. Thanks..

  2. Rafiki

    Rafiki New Member

    sore throat, swollen glands, headache AND backache. You're the only other person I've heard mention the backache. I don't remember if I had a fever. The backache was what's called girdling pain may have been incomplete transverse myelitis. That backache was horrible.

    Good luck to you,
  3. Nanie46

    Nanie46 Moderator


    My illness started with a flu like illness about 22 years ago. I had a terrible sore throat, fever, headache, fatigue, etc.

    My Dr told me it was viral and I believed him.

    Weeks later I developed a constant ache in my right hip.

    Weeks after that I developed throbbing joint pain in every joint in my body.

    When that stopped 2 weeks later, I was left with a fibromyalgia syndrome, fatigue, sleep problems.

    At the beginning of 2009, through my own persistence and research, I discovered the cause of my illness was bacterial.

    That flu like illness was a borrelia burgdorferi infection (lyme).

    I also have associated tick borne coinfections.

    I am now being treated by a Lyme literate MD who follows ILADS guidelines.

    Here is one of the most important and helpful papers that I ever read....

    I wish that I had seriously considered this bacterial infection and associated coinfections as the cause of my illness many years ago.

    I am glad that I did my own research. 3 Dr's told me I did not have lyme based on a lab test.

    Lyme is never ruled out based on a negative lab test.

    Lyme is so complex, that different people can have different sets of symptoms, although fatigue and pain are the most common.
  4. TeaBisqit

    TeaBisqit Member

    Scratchiest sore throat I've ever had in my life. Felt like someone stuffed sandpaper down my throat. Unusual sweating of the armpits, like needed a towel to keep sopping it up. Dizzy. Cognitive. Absolutely felt like I had trouble thinking. One hundred percent total insomnia. Could not sleep whatsoever. Literally snapped awake every second. Fatigue, the likes of which I had never had before. Felt like I never slept in my life. Glands swelled up, spleen swelled up, liver, too. Everything was a mess. I knew who I picked this up from, but he later claimed he was just fine, while I was still dying six months later. I had called him to see if it was just me. He said whatever he had been sick with and given to me, it went away on him completely. He was just fine and working out at the gym. I was bedridden. I don't know what infectious agent it was to this day. All I know is, he picked it up at someone's house in NYC. He was a social worker and he said he had gone to someone's house where they had been sick. And then he was sick, and I stupidly dated him, thinking nothing of his odd sore throat he was complaining of. Lots of deep throat kissing, no sex. And within three days, I was sick. Within seven days, all the symptoms were full blown. End of my life.
  5. jasminetee

    jasminetee Member

    The flu I got that set off CFS was pretty mild at first. I remember a headache that was bad enough to keep me from continuing my morning jog. I remember feeling somewhat fatigued but I had been out the night before at a concert so with a flu, that seemed normal. Not sure what else I had, probably stomach issues as I usually do. No pain anywhere else but this flu wasn't clearing up.

    At some point I developed a sore throat and swollen lymph nodes but don't recall if it was right away or just within the first week or so. Within a few days I had a UTI which I went on antibiotics for. I thought that was unrelated at the time but now I feel it was part of CFS.

    Within a few weeks and over the next 8 months my glands under my jaw swelled up to golf ball size and I developed a weird cyst-thing under my left earlobe which I later found out is the salivary gland and commonly swells from Epstein Barr Virus.

    Within the first few weeks I had also developed a very stiff and sore neck and my fatigue became relentless and I had fevers every day at 6:00 on the dot, and they even changed an hour later (or is it earlier?) with Daylight Savings Time. I didn't notice that, a concerned friend had been keeping track of my fevers and then revealed that to me as it freaked him out.

    The tendons on the left side of my neck made me jump and scream when they were palpated by the doctor who finally diagnosed me with EBV 8 months after I had seen about 6 other doctors and specialists and all of my tests were fine. The doctor explained to me that EBV resides in the tendons on the left side of the neck. He told me Epstein and Barr were 2 doctors who had discovered the illness. He said there were 2 other doctors in the Tahoe area that were doing tests on patients like me and asked if I wanted to become a subject. I hated going to doctors and wanted to resume my life so I declined. It was Cheney and Peterson. lol... This was in 1985.

    I had horrible stomach aches every evening with my fevers too starting within the first few weeks. I tried to go back to college after Winter Break which is when I first came down with EBV or this weird flu but ended up dropping my classes one by one starting with the ones where I was required to be up and moving around. I had to walk very slowly and was mostly bedridden by the 2nd month.

    I was in too much pain to comb my hair and too tired to brush my teeth regularly. I thought I was dying. I developed a very intense appetite especially when I would wake up. I was sleeping all over the clock, often for 12 to 15 hours at a time, off and on.

    [This Message was Edited on 08/28/2009]
  6. ktp812

    ktp812 New Member

    The only other symptom I can remember back then was after the flu and before the fatigue hit (23 days later)..yes I do remember that was I had night sweats and chills.

    I think it is strange that I had this wierd flu twice in a week but was totally gone in 24 hours. I wouldn't have thought anything of it but then I woke up with the horrific fatigue and for me that was the beginning of the illness for me.

    I was first told it was menopause symptoms and then CFS and then Lyme-which I was treated for 2.5 years of abx and now they are telling me CFS.

    Even to this day I don't have pain at all or ever feel like I have the flu. It is just mostly unrelenting fatigue/exhaustion and sometimes dry eyes and muscle twitching in my calf.

    Although I have had many different symptoms over the years they were never bad enough to keep me from doing anything like the fatigue has.

    I never had the need to sleep either, it was more of a total body exhaustion. In fact I would try and sleep during the day but never could. I would just lay there feeling drained, exhausted and scared.

    The first 2 years were the worse for me and I thought I was dying every day. It felt as though the life was just draining from me each and every day..very scary and very uncomfortable. I still get that today but at least I am not as frightened by it.

    I was never tested for virus's back then and was just recently tested but nothing showed up.

    Thanks everyone for the is interesting to read how this all started. I was curious to see if we experienced similar symptoms in the beginning.
  7. Mikie

    Mikie Moderator

    Had our chronic illnesses triggered full blown by a viral or bacterial infection. I don't think it's the pathogen so much as how our bodies react to the infection. For many of us, we can look back and see earlier hints of things to come--bouts of fatigue, pain, and/or difficulty recovering from an infections. Add a highly stressful situation and you may have the "perfect storm" for our illnesses. I have had some problems off and on almost all my life but never thought much about them until I got a mycoplasma infection from which I have never fully recovered. It is in a latent stage now but it took 2 1/2 years on ABX to get it under control. That was 11 years after the initial infection.

    I think it is important to treat the infection, which means it must be identified or one must empirically treat it with AV's and/or ABX. There are viral infections, mostly in the Herpes Family, and bacterial infections, mostly Lyme and mycoplasmas, which can all become chronic if not treated.

    The initial symptoms from my mycoplasma infection were the same as for the flu except that it left me crippled for months afterward. The pain was in my hips and thighs and they became stiff as well. Again, though, I believe we have some fundamental defect in our genetic makeup which allows us to succumb when life throws something bad our way. We may recover from a few traumas or infections but eventually, we become chronically ill when hit by a virus or bacteria.

    Hugs and prayers for you. I hope you are feeling better.

    Love, Mikie
  8. ktp812

    ktp812 New Member

    Yes I do very much agree that it was how my body reacted to this infection that caused me to be sick for this long. I had been having a very stressful time the prior couple of months and I think when I got the "flu" it triggered something and that something has not been able to recover.

    I was on abx for 2.5 years and on valtrex for a month 2 years after the intial infection. I am not sure there is anything more that can be done for me since they can't seem to figure out if it was viral or bacterial.

    I was an extremely healthy person before this and was never sick. Even now I am never sick with even a cold or other flu's.

    I try to think back to other things which might have triggered this from the prior year and I was in a car accident in 2003 but I don't think I really had any problems from that.

    Thanks for your thoughts and I will continue looking for the answer and hopefully some relief from this..

    I pray for you also..

  9. Mikie

    Mikie Moderator

    I keep you in mine.

    Check the HEMEX Labs website regarding excess fibrin in the bloodstream from chronic infections. There is a panel of tests, called the ISAC Panel which will reveal high levels of fibrin. For me, when my sed rate drops really low, I know I am suffering from this form of hypercoagulation. I used to take Heparin injections but I now use Nattokinase enzyme to break up the fibrin. The fibrin traps platelets and these blobs in the bloodstream give pathogens a place to hide from the immune system. I see this as a kind of mop-up treatment for infections.

    I don't know whether you experience Herxing when you were on meds, but getting rid of the fibrin can expose a lot of pathogens to the immune system and cause quite a Herx, or Herx-like reaction, when the immune system goes on a killing spree.

    As I mentioned in another post, there is another alternative--transfer factors. PH sells some here in the store. You can find info on them at the Library here or on the web. I believe they may be more effective than meds and carry fewer risks and side effects.

    Hugs and prayers.

    Love, Mikie
  10. RunningAntelope

    RunningAntelope New Member

    Kim, your description is very parallel to my own. You're the only person I've ever heard describe it this way as multiple episodes of the same flu within a week (perhaps it's a more common occurrence than I'm aware). I got this "24-hr flu," that went away, only to come back on me within a week. Again, it resolved, before reappearing. It happened three or four times in the month, which really seemed odd, but I decided to just "sleep it off" everytime. After the last episode, the fatigue, cloudy head, lethargy, frequent infections, and tender glands under my jawline and armpits became my immediate and constant companions for years. Within probably two years, I had what looked very similar to ARC (Aids-related complex) - thrush, fungal infections, extreme fatigue, molluscus contagiosum (which is evident in extreme immune-depletion), easy bruising, cuts that wouldn't heal, night sweats, etc. Eventually, even after improving (by my estimates maybe 40-50% on some diet-related gut strategy), I developed neurally-mediated hypotension, very low blood pressure, and cardiomyopathy (diastolic dysfunction). The heart issues are what eventually disabled me, though it now feels as though my liver/gut and brain are my biggest challenges.

    BTW, that original string of "flus" happened around 1992, though the NMH wasn't really noticeable until 2000, but the post-exertional malaise sure was. And I ignored it like a fool, or, more like a distance runner who used to run 100 miles per week and was accustomed to living in a chronic state of disrepair, pain, and fatigue, even before I got ill.

    [This Message was Edited on 08/29/2009]
    [This Message was Edited on 08/29/2009]
  11. ktp812

    ktp812 New Member

    Wow...we all have some very similar beginnings. Just reading over these makes me wonder even more what has happened to all of us.

    I thought that when the "flu" went away I was going to be fine but it seems so strange that 3 weeks later I woke up like I hadn't slept in years. I didn't put it all together for some time.

    I have a very hard time explaining to the doctors what I feel like every day. I have very poor sleep quality and wake up most mornings feeling very wierd..almost like I have woken up in the middle of a sleep cycle. I never feel rested.

    I have the typical crashes about every couple months where I honestly feel as though I am not going to live through the day. I am in the bed completely immobilized. I don't know what brings these on as they seem to be sporadic.

    The fatigue is constant from the time I get up in the morning till I go to bed. For some reason in the beginning I was able to cope better. In fact I keep working my regular hours the first 2 years and also continued to run 40-50 miles a month. The doctor at the time told me to exercise as much as possible. I am sure now that contributed to my almost total adrenal failure.

    I don't think I have met a doctor yet that knows what to do for me. I keep getting told I am a complicated case or a difficult case. I have been to one of the top Lyme docs in the country and he couldn't do a thing for me even though he told me I indeed had Lyme.

    I also had extremely low BP in the beginning and I couldn't stand up without getting lightheaded. I have had some of the odd symptoms on the CFS list so I know without a doubt that is what I have.

    I am just so sorry we are all in this seeminly endless nightmare that just won't quit.
    I hope the replies keep coming because I am learning alot from reading them and hopefully I can give some ideas to the doctors cause none of the have a clue what to do for me.
    Thanks everyone!

  12. Nanie46

    Nanie46 Moderator


    If you have lyme, I urge you to find a new LLMD. I'm not sure what you mean when you said your lyme Dr could not do a thing for you. is a really great place with a Seeking a Dr board and a Medical Questions board.

  13. ktp812

    ktp812 New Member

    I was seeing a Dr. H in NY for Lyme. But before him I was being treated for a year here in NH.

    When I say he couldn't do anything for me I mean in terms of the chronic fatigue/exhaustion. I was on abx for 2.5 years including 9 months of IV. I was on at least 12 different combos of abx. Nothing I have been on relieved the fatigue even a bit. They told me flat out that they weren't sure what else they could do.

    They wanted me to see an endo and then talked about sending me to a chinese herbalist in Vermont. So that is what I mean when I say they couldn't help me.

    I want to say also that I have spent alot of time on Lymenet and I never felt as though I belonged there. I just didn't have things in common with anyone there. I know lab tests are not truly correct but I didn't even have a close to positive on. I had just one band the 41..which is what most people have.

    My new doc is going to send me to another LLMD but in my opinion if one of the best couldn't help then I am not sure someone else will.

    So I have gone the whole Lyme route with no success and I mean none. I can live with my other minor symptoms which by the way I still have too but the fatigue is the one that is destroying my life.

    I still totally believe I have CFS caused by a viral infection back in 2004 but I will continue to search out other reasons and I am going to see an endo as soon as I can.
    Thanks again everyone for all the stories.

  14. Nanie46

    Nanie46 Moderator


    Were you treated for Mepron?

    Extreme fatigue and lyme that does not improve with treatment is often due to an untreated coinfection such as babesia...he also says that as many as 66% of lyme patients may be infected with babesia...see this link pages 26-27...

    I tested negative for babesia but I am treating for it. There are many species of babesia and tests are only able to detect 2 species.

    [This Message was Edited on 08/30/2009]
  15. malony33

    malony33 New Member

    a week or so of an extremely painful sore throat, 102 fever, heavy-duty fatigue, pains and aches EVERYWHERE. I was so weak I could not stand up! My DH took me to the M.D., who said just to be on the safe side, he'd give me an antibiotic.

    I recovered but never was the same since (1991). I've been pinched, poked, and prodded ad nauseum; seen many renowned "experts" (lotsa money, honey); taken all kinds of supplements
    on all kinds of regimens; and tried various forms of "exercise" (or at least the kind of efforts a fibro person can make). I have no companion (??) diseases, no underlying infections. I was just diagnosed w/a "sluggish" thyroid, which evidently is common among "us", and I have IBS among a few other accompanying ailments.

    I guess I'll never know what was making me sick that week 18 years ago, but that's when my fibro/CFS started.
  16. ktp812

    ktp812 New Member

    I was treated for Babesia and Bartonella for over a year.. I took Malarone and Plaquenil for Babs and Levaquin first and then Rifampin for the Bart.

    I have also been on IV Rocephin-Ketek-Amox-Probenecid-Ceftin-IM Bicillin injections-Zithromax-Doxy-Minocycline-Bactrim-Valcyte-Valtrex..can't remember what else at the moment.

    Don't really want to go back on abx since I began having yeast problems and it really didn't do much for me.
  17. Sceptical

    Sceptical New Member

    Hi Kim,

    There are numerous competing theories about CFS. The bad thing is that whatever the underlying reason it has the same symptoms.

    Patients can be divided into two distinct groups: infectious origin and not. In the latter, you can find patients with lactose intolerance. They develop this disease slowly. Once full-blown disease came to life, syptoms are identical and hard-to-treat.

    Moreover due to the fact that there is an underlying immunological aspect of CFS, HHV6 and EBV almost always reactivate.

    Watch your digestive tract. Maes and DeMeirleir (in Brussels) have pointed out that bacterial translocation can also cause CFS.

    Although most patients are sadly like me: some digestive dysfunction, some viral reactivation and oxidative stress. Everything in moderation. This does not even give you a clue as to the etiology. This is why I am sceptical about antivirals. No one knows exactly how much a viral infection contributes to your symptoms.

    Take care,
  18. ktp812

    ktp812 New Member

    I don't think the doctors will ever know what happened to me..I only wish HHV6 and EBV would have been tested back then. Maybe it would have given them a clue. I have had them tested a couple times in the past years but the doctor said they were totally normal.

    I have had some really strange tests done in the past 6 months. One was a breathlyzer test where I had to drink a solution and blow into a tube on 4 seperate occasions. That was to check for bacterial overgrowth. Everything was in normal limits.

    Then I had a blood test (10 tubes) where they checked the whole oxidative stress and metabolism, essential fats was a 26 page report. There wasn't one thing off.
    I also had a stool test done looking for parasites, mold, etc...Nothing off there either.

    I was only on the antivirals for a month each and the doctor took me off. Not even sure that was long enough to know anything.

    I guess it really doesn't matter what caused this because I have been on so many treatments I don't think it will change things.

    All I know is that since that "flu" I haven't been the same. I still remember the exact days I had it and what day I woke up feeling like a life changed forever.

    Thanks for your thoughts.
  19. katelar

    katelar New Member

    My flu symptoms started after a trip to the East Coast in 1988. Both my husband and I came down with the flu shortly after arriving home. His went away. After fever and fatigue, mine became pneumonia, which lasted for an entire summer. The low grade fever (100 degrees) also lasted for several months. That fall, I visited an allergist who put me on a steroid to clear up my lungs, after the fever had finally subsided. However, the fatigue lingered along with occasional swollen lymph nodes in my neck when I attempted to resume living my life. One node was the side of my thumb. The following spring, I showed an article about CFS to my family physician. He sent me to an internist who did a series of tests and found nothing wrong. They eventually settled on CFS. I've been battling these symptoms (later diagnosed as FM) since then. At times, the symptoms have improved. However, in recent years, the fatigue became quite extreme. I also noted cognitive changes and had difficulty keeping up at work. Last year, I suffered a mental breakdown from trying to keep up. MRI showed white lesions in my brain, but I was told they are not the type associated with MS, even though I have had episodes of double vision. I am currently no longer able to work, after being diagnosed with a learning disability - short term memory loss and difficulty carrying out tasks that require mental organization and concentration. Surprisingly, my depression has improved now that I have a diagnosis that allows me to rest when I need to rest, and not push myself to keep up with work anymore. Kate
  20. Nanie46

    Nanie46 Moderator


    Like you, I had a FMS diagnosis for a long time.

    I always knew that even though the Dr gave my symptoms a name, it still had a cause that they didn't take the time to look for.

    After 21 years and my own research, I found the cause myself.

    Your symptoms sound like chronic tick-borne infections, such a borrelia burgdorferi (lyme), babesia, bartonella and ehrlichia.

    Please take the time to read the following info carefully. Many people who were originally given diagnoses of FMS, CFS, MS and other illnesses like RA, lupus, ADHD, Parkinson's etc, later found out the cause of their illness was tick-borne infections.

    It is so much more common than people think. Have you ever had a mosquito bite? Chances are you have had one or more tick bites also and didn't even know it.

    It is likely that the cause of FMS or CFS is infectious. Your Dr will not take the time to find the root cause and treat it properly so you can recover.

    You can find lots of info on the Lyme board here and also at's Medical Questions board.

    the above paper contains extremely valuable info.... diagnostic info p 6-8, symptom list p 9-11 and coinfection info p 22-27, but read the entire paper.,_LIA.pdf

    see pages 48-50 of the great presentation above to explain how lyme mimics MS including white matter lesions.

    You know they always say FMS and CFS has "no known cause".......well that's absurd.....everything has a cause, you just have to find it.

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