posted
This is my first time on here. Usually I can't even go online due to fatigue and then after an hour I start shaking (I used to be on the computer all the time for work and fun). Please excuse the misspelled antibiotics. English major and forget how to spell the simplest things now!
I've been on Doxy since July 2007, when I was finally diagnosed with Lyme. I was sick prior to diagnosis around Fall of 2005. I started Biaxin in August but could only manage one a day as the taste was so horrible it would wake me up the few times I was able to sleep.
In October my LLMD thought I may have Babs because of sweating. The sweating only happened after I started treatment for POTS, though. Midodrine and Florinef would cause me to sweat all day long! Along with cold chills. I stopped them after two months on my own as my POTS was worse and I couldn't take the sweating anymore.
Today I had a baseline eye exam to start Plaqanil. While sitting in the chair my chest was just drenched with sweat. This happens at most doctor visits. But it doesn't happen at home or when I attempt much around the house. I was on Mepron for two months then my doc stopped it. Does it sounds like Babs and if so, how long should I do Mepron? Or could it just be from the stress of sitting thorough these appointments?
Last week I started Zithromax and went off of Biaxin due to the taste. So far, no changes.
Since starting treatment nothing has gotten better. My POTS has gotten so bad I have to use a wheelchair when I leave the house, which is only for doc appointments. Tests have shown my fluid level is awful (only 30% stroke index) so I'm drinking 80oz a day. But I'm never thirsty! I never read that anywhere with Lyme/POTS. Everyone is thirsty. Me? No thirst. Ever. I literally almost vomit forcing this liquid down and still I feel just as bad.
My POTS doc has done a lot of great tests but has come up with very little in the way of treatment besides drink a lot. When I told her I did that when I diagnosed myself with POTS last February along with a large salt intake, I just got the usual "You Don't Know What You're Talking About" pat on the head. So, now I'm keeping a drink journal.
I've heard of some people getting saline IVs and having success with them but any doctor I asks says, "Yeah, it'll help but we don't do that. Infection. You're an idiot who won't keep the line clean, we know you're going to rub toilet water over it, etc." Anyone here have saline for POTS and did it help?
It's gotten to the point sometimes I feel like I'm fading away. As if my heart will just stop and I will drift off and I'm okay with that. Telling my father and fiance this scared them since we learned how little blood is actually in my heart even laying down. They're finding new doctors at John Hopkins. Does anyone else ever feel that way? I'm just so weak. Not sleepy or tired during these spells, just a step away from not...being.
Thanks for any insights! I have read the past messages but as I can only do an hour at a time, I never get as far as I would like.
Christine
Posts: 23 | From Virginia | Registered: Jan 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Welcome to Lymenet, Christine.
I have what goes from POTS to NMH and back again and treat it with a combo of Florinef, midodrine and Inderal.
Before treatment for it I craved salt and drank a lot on my own. As my Lyme treatment continues and this condition improves my meds have been reduced and I am not as thirsty as I once was.
Most of us are one more than one abx at a time. That is in order to kill all the forms of Lyme and not allow them to just morph into another form and continue to thrive in our bodies.
Your sweating sounds like babs symptoms to me, but I could be wrong. Being upright too long can cause me to overheat and I suppose that I would begin to sweat if I didn't sit or lie down then.
I notice you are from VA. Do you mind my asking which part?
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I was on Mepron for almost 10 months to treat my babs along with other meds. It takes a long time.
Limednva is correct, most of us are on a number of abx at once to get Lyme and coifections in all the forms.
You started treatment in July .... it does take time to get better .... yet on the other hand, you don't want to undertreat babesia.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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