Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Laurel, Have you had Narcolepsy ruled out? as that is what dropping to sleep, suddently, indicates to me.. Now, in CFS, people can be sleepy..but I don't believe that it is sudden.. You need to get diagnosed by a CFS doc..or Read up on the Canadian Case Definition for ME, and stick around, here, to learn more about CFS/ME Were you on Antibiotics, frequently, during childhood, or later.? Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 How many of us had Mono as a child or prior to getting CFS or Fibro.? Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Laurel, I was a formula-fed baby, too, and I think that has something to do with it..According to my mother, it was the " trend " , then to do the formulas..but I think that natural immunity makes a big difference.. Now, that I know a little more about you, maybe, Stick around, here, and you will probably learn a great deal, before looking for a CFS/ME doc..and you could share your knowledge, too. Also, I think that is great that you are helping with the animal relief effort, as I was from the South, and I was an ANIMAL PERSON, but it can be totally exhausting.right?!. Search for Myalgic Encephalomyelitis Case Definition in Canada... I am really not a computer person! Take care, Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Born 1960; diagnosed 1989. I was never diagnosed. But I had CONSTANT strep throat to the point that my ear would close up and I couldn't swallow. Then, I would " crash " a lot of holidays such as Thanksgiving. We had a beach house near Santa Cruz. Pretty much from the minute we got there to when we'd leave, I fall asleep in the front window. They'd wake me for chores or food, and then I'd drop off. I've been known for being able to fall asleep in the middle of parties -- I wasn't drinking or doing drugs. Almost every vacation when I worked at the ad agency, I'd go home sick. My family always commented on why did that always happen. So, I've often wondered if my illness, like said, started way earlier than I finally just couldn't keep it together anymore. Laurel Mono as a child How many of us had Mono as a child or prior to getting CFS or Fibro.? Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 I had mono in 1985 when I was 30. No CFS issues until the last few years, at least none I reciognized as such. - Bob Niederman On 7/24/06, sb2boys <sb2boys@...> wrote: > > How many of us had Mono as a child or prior to getting CFS or Fibro.? > Sue > > _ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 LIVED on antibiotics. I was sick so much. And later. Penicillin does nothing to me. Nor does ampicllin. I try not to take antibiotics period. But occasionally, say after having bronchitis for two months, I finally relented. And it was the new one -- I think Zithromax. Now DAVID -- here's where my adoption may play a role. Obviously I didn't get the benefit of mother's milk. Plus clearly my mother was stressed during pregnancy. And I've read that the stress during pregnancy can lead to a weakend immune system for the baby. Separately, being given sugar milk probably doesn't help anyone's immune system either. In fact, my first word was " cookie " . Definitely not narcolepsy as it doesn't come on suddenly. Like most others, I have insomnia. In fact, I have sleep-induced insomnia. But conversely can drop off in the most amazing places. Like in the middle of a punk bar; used to go there on my way home from my corporate job. I used to just attribute that to a very high stress job and that I burned the candle at both ends. Worked for a top ten ad agency for most of the 80s. DAVID -- here's another one. Not only did I share an office that was out-gassing with a smoker. From mid-1984 through the end of 1987, my client was Philip . And while I was an avid anti-smoker, I spent many a meeting with people smoking. Amelia -- Thanks. My original doctor was very familiar with CFS. He had studied in Europe. But that was many a year ago. So perhaps I need to look for one. I've been happy I had a doctor who was open to anything related to this. When the ER doctors thought I was just a hysterical wife when I ended up in ER a year ago, my doctor listened and acted when I told him it was not that I was " hysterical " not " just " my CFS. And lo and behold, the MRI picked up something unknown. Where do I find the Canadian Case Definition? I looked under Files, Links, Database. Thanks for the encouragement and support. I am hoping to ease myself back in to this as I am heavily invested and committed to helping with the animal relief effort in Louisiana and Florida. And this is starting to take all of my brain power. And here I thought I knew so much about CFS. Best regards, Laurel Re: Mono as a child Laurel, Have you had Narcolepsy ruled out? as that is what dropping to sleep, suddently, indicates to me.. Now, in CFS, people can be sleepy..but I don't believe that it is sudden.. You need to get diagnosed by a CFS doc..or Read up on the Canadian Case Definition for ME, and stick around, here, to learn more about CFS/ME Were you on Antibiotics, frequently, during childhood, or later.? Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 The full canadian consensus document is at http://www.mefmaction.net/documents/journal.pdf BUT you'll probably want to use the Overview: http://www.mefmaction.net/documents/me_overview.pdf - Bob Niederman On 7/24/06, Laurel Ley <laurel@...> wrote: > > Where do I find the Canadian Case Definition? I looked under Files, > Links, > Database. > Laurel > > > - Cfs chronic fatigue syndrome<gads;_ylc=X3oDMTJhMXM1ZTdpBF9TAzk3MzU5NzE0BF9wA\ zIEZ3JwSWQDOTE1NzQEZ3Jwc3BJZAMxNjAwMDYxNjQ1BHNlYwNzbG1vZARzdGltZQMxMTUzNzk2NDg0?\ t=ms & k=Cfs+chronic+fatigue+syndrome & w1=Chronic+fatigue+syndrome+treatment & w2=Cfs\ +chronic+fatigue+syndrome & w3=Chronic+fatigue+syndrome & w4=Chronic+fatigue+syndrom\ e+cause & w5=Chronic+fatigue+syndrome+diagnosis & w6=Chronic+fatigue+syndrome+sympto\ ms & c=6 & s=219 & g=2 & .sig=2WAkPi4JcGB7bN5Jppswlw> > - Chronic fatigue syndrome<gads;_ylc=X3oDMTJhZjJxdmplBF9TAzk3MzU5NzE0BF9wA\ zMEZ3JwSWQDOTE1NzQEZ3Jwc3BJZAMxNjAwMDYxNjQ1BHNlYwNzbG1vZARzdGltZQMxMTUzNzk2NDg0?\ t=ms & k=Chronic+fatigue+syndrome & w1=Chronic+fatigue+syndrome+treatment & w2=Cfs+chr\ onic+fatigue+syndrome & w3=Chronic+fatigue+syndrome & w4=Chronic+fatigue+syndrome+ca\ use & w5=Chronic+fatigue+syndrome+diagnosis & w6=Chronic+fatigue+syndrome+symptoms & c\ =6 & s=219 & g=2 & .sig=C6obqsC9j1QpPvk4FhgXsA> > - Chronic fatigue syndrome cause<gads;_ylc=X3oDMTJhbTU1MHRsBF9TAzk3MzU5NzE0BF9wAzQE\ Z3JwSWQDOTE1NzQEZ3Jwc3BJZAMxNjAwMDYxNjQ1BHNlYwNzbG1vZARzdGltZQMxMTUzNzk2NDg0?t=m\ s & k=Chronic+fatigue+syndrome+cause & w1=Chronic+fatigue+syndrome+treatment & w2=Cfs+\ chronic+fatigue+syndrome & w3=Chronic+fatigue+syndrome & w4=Chronic+fatigue+syndrome\ +cause & w5=Chronic+fatigue+syndrome+diagnosis & w6=Chronic+fatigue+syndrome+symptom\ s & c=6 & s=219 & g=2 & .sig=YPR6jY29krIv3Ei80FQBiw> > - Chronic fatigue syndrome diagnosis<gads;_ylc=X3oDMTJhcDRrazdvBF9TAzk3MzU5NzE0BF9w\ AzUEZ3JwSWQDOTE1NzQEZ3Jwc3BJZAMxNjAwMDYxNjQ1BHNlYwNzbG1vZARzdGltZQMxMTUzNzk2NDg0\ ?t=ms & k=Chronic+fatigue+syndrome+diagnosis & w1=Chronic+fatigue+syndrome+treatment\ & w2=Cfs+chronic+fatigue+syndrome & w3=Chronic+fatigue+syndrome & w4=Chronic+fatigue+\ syndrome+cause & w5=Chronic+fatigue+syndrome+diagnosis & w6=Chronic+fatigue+syndrome\ +symptoms & c=6 & s=219 & g=2 & .sig=gM7E-18vP90y3wNXze5fyg> > - Chronic fatigue syndrome symptoms<gads;_ylc=X3oDMTJhOHFjNG9kBF9TAzk3MzU5NzE0BF9wA\ zYEZ3JwSWQDOTE1NzQEZ3Jwc3BJZAMxNjAwMDYxNjQ1BHNlYwNzbG1vZARzdGltZQMxMTUzNzk2NDg0?\ t=ms & k=Chronic+fatigue+syndrome+symptoms & w1=Chronic+fatigue+syndrome+treatment & w\ 2=Cfs+chronic+fatigue+syndrome & w3=Chronic+fatigue+syndrome & w4=Chronic+fatigue+sy\ ndrome+cause & w5=Chronic+fatigue+syndrome+diagnosis & w6=Chronic+fatigue+syndrome+s\ ymptoms & c=6 & s=219 & g=2 & .sig=WYuHSG650h6z333UK6LskA> > > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Hi, I had mono just before developing CFS (in my early 20's). Jan (Australia) sb2boys <sb2boys@...> wrote: How many of us had Mono as a child or prior to getting CFS or Fibro.? Sue --------------------------------- All New – Tired of Vi@gr@! come-ons? Let our SpamGuard protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 I had Mono in 1967 or 1968. I wasn't treated at all. Didn't even go to a doctor until my spleen hurt and I got the diagnosis then. I didn't get CFS until after a car accident in 1983. > > How many of us had Mono as a child or prior to getting CFS or Fibro.? > Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Hello LaRue, When did you develop the Neurological Symptoms, if you don't mind me asking..cause I did not develop those, until approximately 12 years, later...We could compile statistics., here Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 I had MONO (Glandular Fever) diagnosed 1955, the first time.1972, the second time..all active infections, the CMV, active infection, 1984. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 How did you reclaim brain cells? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Hi , I am beginning to notice better brain cells, too, with the Fish Oil.. My mother had Peripheral Neuropathy..that can be quite painful..and my Mother was one of the strongest people I have ever encountered..she had to use Neurontin..which can have some Negative side effects, so if you can deal without that, its great ...of course, she, also had R.Arthritis/R.Vasculitis, the worse case ever seen by the Chief of Rhuematology, Mayo Clinic, in 20 years. Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 in IL The Mg+B6 should help stop leg cramps. Perhaps it's time to increase Mg to 1 tsp 3 to 4 times a day. Also I think you should consider timed release Niacin in place of the flush free as they are different substances. mjh " The Basil Book " _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) 1/2 tsp magnesium hydroxide (milk of magnesia) 3-4x day Mostly those above. Recently started big doses of B vitamins, including B1 250 mg (2-3x day), B6 100 mg (2-3x day), B12 sublingual 5000 mcg (1-2x day), niacin 500 mg nonflushing (2-3x day), pantothenic acid 250 mg (2-3x day), super B complex including B1, B2, B3, B6, B12, biotin, pantothenic acid, and vitamin C, in liver powder and brewer's yeast (1-2x day). But this is only a couple of weeks old, so don't know how much help I'm getting from this yet. Trying to help peripheral neuropathy too, so may be a long haul. (I woke up with a leg and foot cramp, so I guess the B6 is working.) in Champaign IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Bob Sam's Club has enteric coated fish oil caps. Some folks tolerate these better than the others. A month's supply costs less than $9.00 mjh " The Basil Book " _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) _Re: Mono as a child _ (/message/102793;_ylc=X3oDMTJxZWp\ 0Z3I1BF9TAzk3MzU5NzE1BGdycElkAzkxNTc0BGdycHNwSWQDMTYw MDA2MTY0NQRtc2dJZAMxMDI3OTMEc2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE1Mzg1MjgzNg--) Posted by: " bob niederman " _bobn1955@... _ (mailto:bobn1955@...?Subject= Re:%20Mono%20as%20a%20child) _bobn1955 _ (bobn1955) Tue Jul 25, 2006 11:40 am (PST) Which brand of fish oil? I have digestive problems with all of the onces I've tried. On 7/25/06, netsukeme <_kcapel@..._ (mailto:kcapel@...) > wrote: > > 1 g fish oil 3x day (trying to work up to 3 g 3x day) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 I use RXOmega-3 Factors, Pharmaceutical Grade, Dr. Murray, which you can get at most of the internet co....I don't know if I can give specific answers, here.. is it OK? I have, also, heard of two other brands..but this is a BAD day for me..so I can look that up, at another time.. Good Fishing, Amelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 I was diagnosed with mono in 1985 at age 38 and developed ME/CFS fifteen years later. MCS, too, over the past several years. LaRue (back to lurking) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Infectious mononucleosis, 1951-52, age 6. Another mono, 1967. One or the other must have been CMV. Very bizarre flu (crippling joint pain in lower extremities) in fall 1986. Several crashes since, including 2000-current with dental infections. Recently have reclaimed most of my brain cells and grateful for small favors. Also making good progress in eradicating bone pain and tickled pink about that. Working on underlying systemic fungal and probable herpes infections. in Champaign IL > > I was diagnosed with mono in 1985 at age 38 and developed ME/CFS fifteen > years later. MCS, too, over the past several years. > > LaRue (back to lurking) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 1 g fish oil 3x day (trying to work up to 3 g 3x day) Help from reduction of overall pain level from: vitamin D3 2400-3200 (2000 working up to 3200 current) IU per day 1/2 tsp magnesium hydroxide (milk of magnesia) 3-4x day Mostly those above. Recently started big doses of B vitamins, including B1 250 mg (2-3x day), B6 100 mg (2-3x day), B12 sublingual 5000 mcg (1-2x day), niacin 500 mg nonflushing (2-3x day), pantothenic acid 250 mg (2-3x day), super B complex including B1, B2, B3, B6, B12, biotin, pantothenic acid, and vitamin C, in liver powder and brewer's yeast (1-2x day). But this is only a couple of weeks old, so don't know how much help I'm getting from this yet. Trying to help peripheral neuropathy too, so may be a long haul. (I woke up with a leg and foot cramp, so I guess the B6 is working.) in Champaign IL > > How did you reclaim brain cells? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 I had Mono in 1980, my junior year in college. Didn't recover well and flunked out that semester. After I graduated, I was still having low grade fevers, sore throats and fatigue. I believe that my liver was palpable and the doctors suspected Mono but of course I had already had it. They never did come up with a solution. I believe those were my first years of CFS even though I didn't really crash until 1996. Before 1996, I had a lot of fatigue but just thought if I lived a healthy lifestyle everything would be okay. Od course it didn't work out that way. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 I was always tired and slept a lot as a child (could have been exposure to who knows what as I was born in 1952, had all the shots, played outside near the orchards which were sprayed, hiked around a lot with parents so could have had tick exposure early on). Had constant tonsilitis as a child, but whenever the surgery was scheduled I would be sick and they couldn't do it. However, in 1970, when I first started college I had a bad flu, tonsilitis, strep throat, and an allergic reaction to OTC meds. Who knows how much of this was actually mono~never diagnosed but later had high levels of EBV in my system, which reactivates often enough that I recognize the sore throat, swollen and sore glands~for which I take Valtrex for 2-3 days to give my body a boost and I get over it. Also in 1970 had severe hay fever/allergies manifest when we moved to Sacramento (everything blooms there). Most likely had food allergies before this, but it really showed up then. My symptoms are that I can't stay awake after I eat, sleep like the dead for 2-1/2 hours, wake up groggy and foggy. Funny you mentioned holidays, the meals always made me crash afterwards (too much combination of foods for me). It took two trials through food allergists through the years before I finally crashed in 2003 and went through Dr. Dantini. I now stay close to my food allergy diet as I can or I pay with throwing up all night, and days of foggy brain and tiredness that is reminiscent of past years. I've learned what I can eat out (hubby loves to eat out) and what I can combine. Stay away from wheat and processed stuff as much as possible, avoid onions and tomato sauces, too. Taking Recuperation has helped a lot, although not with the muscle pain. I just sprained a tendon (tennis elbow) in my right forearm, then felt it rip and pull when working at the cafe when I tried to catch a pan that was slipping. I am on anti-inflammatories, using an ace bandage and sling to protect it and remind myself not to use it. Don't know when I'll be able to carry heavy stuff again. Worked 19 hours in three days watching our campus last weekend when the end of campmeeting brought everyone to our cool beach when the weather hit 90s here on the coast. I am on vacation this week, but we elected to stay at home as our summer place is not air conditioned and the temps were to be high 90s there also. So, we are doing to do some day trips locally and save $$ on gas and food costs, and sleep in our own bed (sigh). Isn't the same, but will have to do. Our son had to move out and we are helping with rent and expenses and I don't make much. He is trying to get work, but everyone has summer help already, so he's vacationing more than we all planned in La Selva Beach CA Yay, the fog was in last night and this morning!!!! Mono as a child How many of us had Mono as a child or prior to getting CFS or Fibro.? Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Which brand of fish oil? I have digestive problems with all of the onces I've tried. On 7/25/06, netsukeme <kcapel@...> wrote: > > 1 g fish oil 3x day (trying to work up to 3 g 3x day) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 This is just the cheap-cheap Spring Valley brand from Walmart, but I've used other brands too. Try working up from a smaller amount, e.g., 500 mg instead of 1 g. Since I have rocky guts, I try to " err " on the side of starting small and starting safe. > > Which brand of fish oil? I have digestive problems with all of the onces > I've tried. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 I use Zone Labs. They are very pure and are independently rated by another lab for pureness that you can look at. I've " burped " fish taste from all others that I've tried except these. bob niederman <bobn1955@...> wrote: Which brand of fish oil? I have digestive problems with all of the onces I've tried. On 7/25/06, netsukeme <kcapel@...> wrote: > > 1 g fish oil 3x day (trying to work up to 3 g 3x day) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 Sounds like " a plan " with the Mg + B6. I do remember hearing some time ago that if you had leg cramps to either increase or decrease the B6 you were taking. Yes, I noticed after I got home with this stuff (the flush free) that it was different stuff than regular niacin. Will look for the timed release, because I don't handle the flushes well. Thank you, as always, mjh. > > in IL > > The Mg+B6 should help stop leg cramps. Perhaps it's time to increase Mg to > 1 tsp 3 to 4 times a day. > > Also I think you should consider timed release Niacin in place of the flush > free as they are different substances. > > mjh > " The Basil Book " > _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) > Quote Link to comment Share on other sites More sharing options...
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