posted
I'm just starting my 5th week of mepron/zith and I am getting very frustrated. I haven't really noticed any improvements. I was doing well on ceftin until I got a cold in late July and that brought out horrible POTS symptoms. My pulse doesn't really go up that high (maybe 90-105) and my BP remains fairly stable but I feel really lightheaded and I have blood pooling in my legs and blue veins all over my body. After two weeks and no relief with the ceftin, my doc thought Babesia might be rearing its ugly head so I switched to mepron and zith. Is it too early to expect to see changes? I can't really tell if I had a herx or not...I've had fairly good days but mostly bad days. I had one day with horrible air hunger (funny because my POTS symptoms eased up that day) and feel like m equilibrium has been off a bit more than usual but no outright...I want to kill myself herx. The POTS is what scares me the most. I am afraid that I am going to live with it forever. I can deal with all the other horrible symptoms, insomnia, rocking on a boat feeling, air hunger...etc but the POTS is killing me. I am taking florinef due to low aldosterone and increased salt and fluids but I am still not able to me upright for more than 30 minutes. I have had autonomic and cardiac testing done...but everything turns out fine...docs just say to live with it. I feel like I might have been on the mend, but I got another cold and BOOM the POTS symptoms that might have been a tiny bit better were back out in full force. What is it about a cold that brings these out? Sorry for the long post, but I am so tired of being sick and scared and crying...I have two little boys and should be out enjoying the fall with them...not curled up in a ball ill...but I'm sure you all know that. Anyone have any experience with lyme/babesia/POTS? Should I give the mepron more time? I need to know that this too shall pass.
Posts: 7 | From Nebraska | Registered: Apr 2012
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posted
I have struggled with POTS also for a long time the only thing that seems to help is drinking a ton of H2o I drink more then half of my body weight in ounces daily and have one 32oz bottle of gatorade for the electrolytes. This and florinef 4 pills daily is the only thing that helps !!!! I know the gatorade has sugar which I should avoid but Im doing what helps. I find when it is around my menstration things are worse. Hydration has been the ONLY thing that help -- good luck let me know if this helps you
Posts: 109 | From Western Massachusetts | Registered: Aug 2011
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posted
I really feel for you! I'm on metronidazole and my POTS is as bad as it's ever been! I can't even walk from the bathroom to the bed some days without lying down in the middle. My doctor told me that if I fail metron I could take tinidazole instead, but it's much much more expensive and my insurance won't cover any of it. I don't know if that's an option for you or if it would even help with POTS symptoms flaring up, but just wanted to mention it. EDIT: Sorry, apparently I can't read. I just saw you're on mepron, not metronidazole so ignore all this if they're totally different.
Also, I take midodrine for POTS, and when I started that I really improved for a few months. I kind of leveled off after that, but I think now my swings are more from lyme treatment than POTS on its own. I hope you get to feeling better and can spend the time you want with your kids. I know how POTS just drains you completely.
Posts: 10 | From Ohio | Registered: Jul 2012
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beths
Frequent Contributor (1K+ posts)
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posted
I had horrible POTS-much better now with Lyme treatment-hang in there
Posts: 1276 | From maryland | Registered: Jan 2009
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Beths are you still dealing with POTS? I thought you kicked it a long time ago.
Kat...I don't understand when you say your swings are more from the lyme than POTS? Isn't the lyme causing your POTS? I'm pretty sure they are one in the same.
I have how all these tests run on my nervous system and heart and nothing had come up abnormal...must all be a part of the infection. Babesia is worse than lyme in my book....the POTS, rocking on a boat and air hunger are way worse than the floaters, pins and needles and other symptoms I attribute to lyme.
Posts: 7 | From Nebraska | Registered: Apr 2012
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beths
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Member # 18864
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I relapsed about 16 months ago- the POTS came back, but it got better quickly. I have slight problems when I herx
Posts: 1276 | From maryland | Registered: Jan 2009
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Good to hear that you have mostly beat it back! Did you feel it was Babesia that was the culprit? I want to treat whatever infection is causing this and I suspect Babesia. Sneaky little buggers...
Posts: 7 | From Nebraska | Registered: Apr 2012
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I don't know if its Lyme or babs. It would be helpful to start a post for those with POTS and see if they have LYME/babs and when it flares. I guess it could be either
Posts: 1276 | From maryland | Registered: Jan 2009
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I just saw you're on mepron, not metronidazole so ignore all this if they're totally different.
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