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
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I had/have POTS too and Thermatabs really helped me a lot. I know I would not have made much progress if I hadn't treated the POTS. Also you mention insomnia; again I would not have improved if I had not addressed the insomnia either. I have come to believe that to beat Lyme and co that you not only have to treat the infections but you have to slowly and painstakingly repair all the damage that they did to your body (POTS, thyroid, adrenal fatigue were the biggies for me). I'm not there yet but I'm doing a lot better and have hope now.
I have to say that I felt awful last winter when I was on high doses of Mepron and Zith. Then, all of a sudden during a week off of meds (my doc pulses) I felt pretty good! Felt horrible again once I went back on the meds and this cycle continued until I got a yeast infection and the doc reduced my Mepron dosage and took me off of Zith. I felt a lot better on the lower dosage.
So... I guess the Mepron must have helped me since I don't know what else to credit the feeling better on the off week, and the general improvement in my babesia. But the high dosages didn't agree with me. I thought at the time I had to suffer through but now I'm not so sure that was the right course. Maybe you could ask about a lower dosage? Or ask about taking a week off here and there?
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
PS - I have two little kids too and it was horrible last year not being able to do anything with them. It's much better now. I still have to stop and rest a lot but I can actually do things with them. You will get there too! Just don't let your little boys jump in leaf piles this fall! Too risky.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic