Topic: Babs Question - I think the Mystery is Solved for Me!
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I am currently on Ketek and Omnicef and don't see my LLMD for another month. I'm pretty sure I have Babs, from my symptoms. Would it hurt for me to start on Art. until I see him?
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Michelle M
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Member # 7200
posted
Well, I would not, because it might make the babesia resistant to treatment with Mepron/Zith/Art combo.
Now, if you called your LLMD and asked and he OK'd it, that'd be different, of course!
Otherwise, nuh-uh!
Just my .02, a'course.
I hope you're feeling better sooner rather than later; babesia symptoms are not much fun... :-(
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymednva
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posted
^ for more input.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Aniek
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posted
If you think you've had babs for a long time, will a month really make that much of a difference?
I always offer the advice not to start any medical treatment without first conferring with your LLMD.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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valymemom
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posted
It is just so frustrating, I know, and such hard work researching/organizing the bits and pieces of the many infection possibilities.
I do agree, though, that you should wait until you confer with your llmd.
Go to that appointment well prepared to get him on board.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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groovy2
Frequent Contributor (1K+ posts)
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posted
do a google on - World Health Org. Artemisinin -
Lots of good info there--Jay
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymednva
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Member # 9098
posted
Thanks for the good info. I will definitely wait after reading the articles from the WHO.
I just feel like I am going backwards from where I was a couple of months ago and that is getting frustrating. My fatigue, headaches and neck, shoulder pain have all increased, after subsiding a bit when I was first on the abx (except for when I was herxing).
When I'm feeling lousy four weeks seems like an eternity. I also hate to spend a month in bed if I don't have to do so, but I guess that's what I'll be doing, just spending more down time than I was during the early part of the summer.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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lymednva
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Member # 9098
posted
I think I figured out the reason for the downhill progression in my health, which was increased fatigue and more lightheadedness/balance difficulties.
Today I saw my endo and my seated BP was 114/64. They said, "That's great!" I replied, "No it's not!" It is about a 10-15 point drop from what I had been having.
Then as I waited for the doc to come in I was thinking (rare occurrence here!) and it dawned on me that I had reduced my Florinef, per my LLMD's recommendations, due to lower potassium levels.
The lower dose of Florinef has caused my BP to drop, which in someone with orthostatic intolerance is not a good thing! I have now left a message with my LLMD.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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valymemom
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posted
Sounds like you figured it out but it gets exhausting trying to figure it all out!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
That's still a very good BP. Mine is often in the 90's. If it's as high as yours, I consider it a good day!!
But i do understand what you mean about it not being normal for you. Once your body adjusts to it, you may even like it!
hope you feel better SOON!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
For many years (30+?) my BP was always 90/60 an everyone told me how wonderful that was. However, I was compensating for orthostatic intolerance much of that time.
When I was pregnant I became nauseous if I wasn't lying down. I thought it was morning sickness until I recently made the connection.
You have to remember that was my sitting BP. If it had been taken standing it may well have been much lower. When I was at my worst it wouldn't even register on my home BP monitor and would be around 80/50 at my doctor's office, when standing.
My body won't be adjusting to this BP, because it's making me feel a lot worse. I had about three good months while on the abx and then made a sudden downturn. I couldn't figure out why, so was grasping at straws for reasons.
Having to take 2-3 hour naps every afternoon along with sleeping over nine hours at night is not a fun way to spend my life when I have recently been able to get by with only one hour naps and 7-8 hours at night unless I was herxing.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Carol in PA
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posted
I think you're doing a marvelous job of figuring out what is causing your problem.
When you're at your doctor's the next time, ask him to take your blood pressure while you sit. Then stand up, and have him take it.
Stay standing for 5 or 10 minutes while you discuss things with him, and have him check the BP again.
Heh, after seeing the evidence, I bet he'll come to the conclusion that you do have orthostatic intolerance.
If the nurse sees you first to do your vital signs before the doctor comes in, maybe she could do the sitting and standing blood pressure first.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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lymednva
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posted
He KNOWS I have OI. I take a ton of meds to bring it under better control. When I first saw him I could only sit up for about 20 minutes before I needed to lie down and throw my legs over the back of the sofa to get the blood to come back to my body from my feet! That was with my feet elevated, too!
I've come a long way since then, but do not want to to go back to where I was! He always has his nurse take my BP first lying down and then again standing. It doesn't take five minutes for it to drop; more like 15 seconds!
At least in the beginning I couldn't have even stood for 5 minutes. I would have been messed up for days. My tilt table test put me in bed for three weeks, and I never fainted, they stopped it when I became nauseous and called it positive.
My problem is he reduced one of my meds, the Florinef, due to my lowering potassium level, even though I take mega doses of KCl to maintain it. Florinef leaches potassium from the body.
That has caused my BP to drop from where I felt good, to where I am spending a lot more time in bed.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Carol in PA
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lymednva, Sorry, I missed that when I read the post.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Lymednv, I, too, can understand your eagerness to get Babesia treatment started, and I concur with what others have said about waiting until your doc is on board, especially because of the risk of developing resistance if you're not on Mepron.
Both my daughter and I have been on Mepron or Malarone plus Art for about 8 months now. And while I can look back and see that we are both feeling much better and have few if any specific Babs symptoms left, there was no point of dramatic improvement upon starting these meds. In other words, I don't think starting Art would keep you out of bed for the next 4 weeks (although I think you've already figured out that may be related more to BP). It might get the ball rolling quicker, but unless you're really lucky, I think you're unlikely to feel much different when you start the Art. (And some people who post here report feeling quite a bit worse when starting it.)
Posts: 164 | From USA | Registered: Jul 2005
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lymednva
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Member # 9098
posted
I got a call back from my LLMD today and I am going in next Tuesday to see him. That should help figure out the situation, and is better than trying to do it by phone. I am pleased.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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liz28
Unregistered
posted
Here's a website for Riamet, the mainline malaria treatment outside the U.S. that contains artemisinin:
One thing you might try is combining artemisinin ($20 from Vitacost.com) with doxycycline (100mg/2x day). It should be easy to get a longterm script for doxy. These are not a cure for babesia/malaria/whatever it is we have, but doing a combination therapy will decrease the likelihood of drug resistance.
Doxy is taken as a malaria preventative in tropical contries, and is often used in treatment combinations, such as quinine and doxy, or chloroquine, primaquine and doxy. It is not an effective treatment by itself, but it seems to be added more and more to these combinations.
Maybe the two drugs together could help you feel better--even if they don't cure you--until you get a chance to try some stronger drugs.
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![[confused]](graemlins/confused.gif)
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My fatigue, headaches and neck, shoulder pain have all increased, after subsiding a bit when I was first on the abx (except for when I was herxing). ![[Eek!]](eek.gif)
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I have now left a message with my LLMD. ![[Big Grin]](biggrin.gif)
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