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Re: To Barbra re: lupus, immune deficiencies from MelFrom: Barbra (anonymous@obgyn.net)Mon, 7 Jan 2002 15:57:38 -0600 (CST)
At Mon, 7 Jan 2002, Melanie wrote: > >Hi This may be totally unrelated but 2 years after i was diagonsed with >psoc i was diagnoised with ME, I have suffered with an' impaired' immune >system eversince, 9 years. I too am ill oftain, if there is a bug going >around i catch it, and boy is that hard to get accress at work , you >know that you ARE actually ill and not just takng time off for the sake >of it. >I have found that complemeentry medicine does help, pine bark extract >and also niastatin ( sorry spelling) an antibiotic in a pure form, >evidently the sugar cravings increase the chances of candida which gives >you yeast infections and that makes you tired and so on. The niastatin >did really help but you can only take it for a limited time as it is an >antibiotic. >Are you really tired during the day, infact exhausted but find it really >hard to gfet to sleep and are therefore even more frustrated and >exhausted in the morning, and when you are off work at the weeknd do you >find that you can sleep fopr England , well USA in your case. I can >easly sleep until 12:00 at the weekend which drives my husband mad at >times as the weekend seem to be so waisted, he works ling hours so the >weekend is the only Q.T we have together. Ant suggestions. >Do you find you have very tender erm breasts? painfull to toach let >alone put in a bra? >Take care, hope to hear soon >Mel >At Sun, 6 Jan 2002, Sonnet wrote: >> >>Barbara, I'd sure appreciate hearing more about what's going on with >>your body and how this all ties in with your lupus. I know there have >>been a few women on this board with lupus (I am personally convinced >>that PCOS is at least in part auto-immune, which is why we all have such >>trouble with lupus, Chrohns, some with MS, thyroid problems, etc.) >> >>I ask because I have had little to no immune system the past 3 years. I >>have had glandular fever more than once as well as mono. (All the >>Epstein Barr stuff.) I am sick just about constantly, I don't think I've >>gone a full week in 3 years without having an infection of one kind or >>another, even if it's just a little cold. Does this sound like what you >>went through? What sort of problems did it eventually cause for you? How >>would you have treated it differently if you could? >> >>Thanks! >> >>At Sun, 6 Jan 2002, Barbra wrote: >>> >>>I,too agree,that if I had been sent to the proper specialist when I >>>first had complaints of PCOS..this lupus could have been avoided. >>>My lupus was drug induced,as I always had glandular fevers,mono and a >>>weakened immune system.The docs thought of me to be just a highly >>>stressed woman and to seek the help of a shrink to help me deal with my >>>so called 'hypochondriasis'. >>>They said my symtpoms were puzzling and didn't fit in to their so called >>>book of diseases. >> >>-- >>Sonnet Fitzgerald, PCOS Association, Online Community Liaison. Email: sonnet@pcosupport.org >> Hi Mel, No,I don't find that we have the same symptoms at the present,possibly some. By the way,what is ME?Sorry,new to all these medical terms=) I used to get alot of viral things,colds,flu,etc,and alot of strep throat,but since the last year and a half(touch wood),apparantly,my immune system is very good. This year here in Winnipeg,Manitoba,Canada,we have cold winters,everyone in my family had colds and flu and my husband is really sick,but I seem now to be immune to the catching the viral thing and or infections anymore.I have been around alot of people this year,most having colds and flu,that I normally would have caught in a heartbeat in the past,but not this year,and possibly too,may be attributed to the complimentary,natural meds and alot of chelated vitamin and mineral therapy.I too,have used Pine Bark extract and Ecquanecia(sorry bout the spelling,,my big downfall here).Also,alot of other immune system boosters in herbal form.It is possible that they have made a difference,I think that they have,but I still have all the other issues to deal with.Wish I could find a remedy for them!=)I don't have sore breasts at all,but they do get tender before onset of menses,but that was always normal for me. I do get tired,very tired,it is more of a complete exhaustion at times that is awfully draining,but related to my lupus flares,and in all probability the PCOS and IR. I don't sleep like a normal person,I am dead during the daylight and come alive at night,till the wee hours of the morning,That is the only time I feel okay.Seems my adrenaline surges go down and my cortisol is up during the day and lowers during the nite time.I usually go to sleep like the night shift workers....I go to sleep anywhere between five a.m-seven a.m and sleep till one in the afternoon or maybe two. I am worse upon waking up,whatever time that may be.It takes me four hours till I can manage the strength to shower and dress,then I am so tired,that I sit in my chair for over an hour with severe heart palps. Then I get the surges of adrenaline,where I feel that I can go ahead and do something,but when I attempt to,I fail and that brings me down.In my case,it is not till about after midnight that I get normal energy that lets me do things,like clean a little and cook,so I have to take advantage of it while I have the energy and not so much pains in my legs. Like today,I had made a tentative plan with a friend to go for lunch.I got up as planned,but no way could I even attempt to get ready.I am too exhausted.If I did go,I would suffer greatly the day.I have to do when I can and stop when I know I cannot.So very hard not to be able to commit to anything.I feel so bitter at times when I see how easy my life once used to be and now everything is so difficult for me to do.Like now,my legs are numb and purple and tingling,,,,,driving me nuts! Keep in touch, (((((((hugs))))))))......p.s. I copied that from Panacea=)
-- Sincerely, Barbra Camara
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