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Post by itsybitsyone on Jan 16, 2008 5:04:33 GMT -8
Cobby...you CAN do this break. If it gets bad she will put you back on.
AND in talking previously on a sleep disorder group...the best anyone gets is provigil for it. You already get that, don't you?
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Post by LymeEnigma on Jan 16, 2008 9:15:44 GMT -8
I think more of us are "House" guests than we'd like to admit. Even when a LLMD "switches up" meds, it often appears to be nothing more than a guessing game ... or a wild goose chase for the right combination, because we are potentially dealing with so many different pathogens. I really think it's no wonder some people are on various antibiotics for numerous years ... sometimes it might take that long to find "the right drug for the right bug" ... but, of course, they'll turn around and say it took three years of abx to treat them, even if, say, two of those years were spent on meds that were utterly ineffective against their particular infections....
Did your LLMD say what kinds of specialists she wants you to see? I take it she already took the time to rule out the common co-infections?
Hang in there. Like Nancy said, if you clearly relapse your LLMD will very likely put you back on the antibiotics. (((hugs)))
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Post by itsybitsyone on Jan 16, 2008 13:08:00 GMT -8
I am having a moment. I keep wondering...what if this isn't Lyme after all and I have something worse like syphilis? Now, in NJ I had to be tested before I got married, and I know my dr. did full std, including HIV, workups when I was pregnant. I have been tested for HIV several times...and syphilis at least twice I think. So, why am I worried about this NOW.... Might be the zoloft talking. But no matter what I do, I cannot get rid of these persistent swollen lymph nodes for years now. Every since I had the flu last month they are worse than they have been in 5 years. My neck feels tight. I do not have armpit swelling...just neck and clavical (sp). And you know, I used to have one for like a year behind my ear that finally went away.
Its driving me nuts. I am thinking Waaaaaaaay too much.
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Post by LymeEnigma on Jan 16, 2008 17:44:43 GMT -8
What leads you to worry about syphilis, specifically? I don't know if this will make you feel better or not, but I had a swollen lymph node behind my left ear from infancy (my mom took me to the doctor when I was just a baby, thinking I had cancer). It never went flat, ever, but would get absolutely bulbous when I got sick (I have a picture on my site). After thirty-some-odd years of having this swollen lymph node, it went down after about three or four months of the zithro/plaquenil combination. It has slightly reared up a couple of times, like now - because I'm fighting a cold - but it is even now relatively flat compared to where it used to be constantly and otherwise it has been completely flat for months. I'm still in awe over it. I have to wonder, again, if twin sis and I were born with at least one infection ... now I'm having a moment. It must be contagious. Cobby? Have you read my most recent essay? I think we all have a lot more to worry about than syphilis, and better diagnosis and treatment might actually be right under our noses: www.lymeenigma.proboards104.com/index.cgi?board=creative&action=display&thread=1198540177I'm sorry that your mind is racing like it is.
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Post by itsybitsyone on Jan 17, 2008 4:35:24 GMT -8
LE...
I don't know. Maybe because the symptoms are so similar. I think its one of the things that goes through our heads. There's one ex-boyfriend from my 20's that I don't know what happened to him....last I heard he was living in a homeless shelter. That doesn't bode well and sometimes I think about it a little too much I guess.
I have has swoolen glands a very very long time too. I don't remember a time when I didn't have them BUT the last 5-6 years are the worst.
I'll read your article.
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Post by cobweb2 on Jan 17, 2008 14:53:42 GMT -8
Well- in my "wild and woolly" days I actually got a call from the Health Department to come in and be tested for Syphilis because a "friend" of mine tested positive. Can't even remember his name now. It was also at that time I had persistent enlarged lymph nodes-and had an underarm node surgically removed. "unknown etiology" Why do I have this urge to paint bizarre abstracts?
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Post by cobweb2 on Jan 17, 2008 14:56:58 GMT -8
Lady E- I forgot to anwer your question-she would like me to go back to my Primary Duck to have a sleep study. Also dermatologist for skin biopsy, and a neuropsyche.
And Itsy- yes I already take provigil. Effective sometimes, sometimes not.
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Post by itsybitsyone on Jan 18, 2008 6:17:53 GMT -8
See...the wild and wooly days catch up with us, no?
Not sure if its guilt, or growing up, or anxiety, or disease...but what the heck were we thinking???
Sometimes I think about it too much is all.
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Post by LymeEnigma on Jan 18, 2008 9:41:56 GMT -8
The dermatologist and neuropsyche sound like they might be worth your while, Cobby. A skin biopsy and a SPECT scan might be telling.
Do you fear your syphilis tests could have been false-negative, given the diagnostic pitfalls of Lyme?
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Post by itsybitsyone on Jan 18, 2008 11:38:53 GMT -8
Well...
I think we all doubt a LOT about what medical tests have to offer. At least I know I do. There is always a little doubt...
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Post by cobweb2 on Jan 18, 2008 13:21:15 GMT -8
Lady E-At the time I didn't question it-and yes after this discussion I had a flare of fear, with just a teeny weeny bit of residual doubt-mostly because my Lyme tests were so positive-so it must be the Lyme.
I also thought today- that I heard that too much drinking kills brain cells-which do not regenerate. So then how can the effects of neuro lyme be reversible?
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Post by itsybitsyone on Jan 18, 2008 13:35:16 GMT -8
Argh.
Its frustrating. I think that's why sometimes we need a forum like this in order to talk it out.
I know I deal with it better after getting it out. Once I put in on paper, so to speak, I feel a little sillier about it, realize it is highly unlikely, and go about my day.
I appreciate you all being here, I honestly do. Because I know that while I have my moments, I wouldn't say a lot of this to the general public because they just wouldn't 'get it'.
The mind can come up with ALL SORTS of reasons why it could be something more insidious...especially when we are already dain bramaged.
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Post by LymeEnigma on Jan 18, 2008 16:38:19 GMT -8
I'm glad we're all on the same page on that....
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Post by cobweb2 on Jan 18, 2008 20:54:41 GMT -8
we may be on the same page-but are we in the same chapter? and I want to know how it all ends? How does this mystery get solved- will it be in our lifetime?
BTW- yesterday was a wash out. BUT today was well lived and balanced by work and relaxation and hope.
I still refuse to be sick any longer!
Yesterday may have been a wash out because Wed. evening I was at a long and intense Compassionate Friends Meeting-so perhaps that's why I felt so drained on Thursday.
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Post by LymeEnigma on Jan 19, 2008 13:42:31 GMT -8
That's so great! I think we're definitely on both the same page and chapter ... I want big answers, but also I want to do everything in my power, right now, to ensure a decent level of quality of life. I think that if we fight for that, by "endurance training," taking care of ourselves, and the like, we can make life livable. It takes work, and a bit of trial and error, but no matter what the cause of our varying persistent symptoms (sequelae or active infection) I truly believe there can be such a thing as life after Lyme. We'll figure it out. We just have to stay positive in the meantime.
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