laure Posted February 28, 2011 Report Share Posted February 28, 2011 Dd10 is on tindamax on weekends only, Augmentin and zithromax the others. Because the tindamax makes her tired and dizzy, we have been giving her the 500mg. all at once, in the evening Saturday and Sunday. For several weekends now, we have noted that she is 100% (or nearly) on Sundays. (About 85% the rest of the time, with some short but powerful OCD contamination freak-outs). Anyone else have this experience? Herxing, if we should assume it is that, seems to be randomly occurring mid to late in the week. Wondering if this is just because it is the weekend and sleep, food, etc. are all better controlled on weekends? Otherwise, I might be a fan of daily tindamax!!! Link to comment Share on other sites More sharing options...
MichaelTampa Posted February 28, 2011 Report Share Posted February 28, 2011 I'm not sure how to explain the patterns of symptoms you are seeing. Sometimes that's just hard to figure out. I've been on tindamax daily for months, never pulsed it like that, but might be in the coming weeks or months. What was the reason for giving it only on the weekends? Link to comment Share on other sites More sharing options...
laure Posted February 28, 2011 Author Report Share Posted February 28, 2011 I'm not sure how to explain the patterns of symptoms you are seeing. Sometimes that's just hard to figure out. I've been on tindamax daily for months, never pulsed it like that, but might be in the coming weeks or months. What was the reason for giving it only on the weekends? For kids, no school on weekends, so good time to put them through a herx! Link to comment Share on other sites More sharing options...
adkmom Posted February 28, 2011 Report Share Posted February 28, 2011 Our ds4 had was herxing on the plane ride back from Florida. Once we made it into the airport, I literally went to the corner and cried! I was exhausted. 3 hours on the plane with non-stop movement, over chairs, under chairs, talking loud, yelling about the noise of the engines, kicking anyone who would try to calm him down...it was interesting! AND, the pilot invited him to the cockpit. God, was I a wreck. He didn't know who he was dealing with. My advice: NEVER change meds while on vacation. Link to comment Share on other sites More sharing options...
lyme_mom Posted February 28, 2011 Report Share Posted February 28, 2011 The emfs on the airplane can make Lyme worse or more active. My son's bells palsy used to get worse on airplane rides but not anymore. Link to comment Share on other sites More sharing options...
NancyD Posted March 1, 2011 Report Share Posted March 1, 2011 Our physician tried taking DD14 off Tindamax after 4 months on it and she started backsliding so we put her back on it yesterday. We are back to pulsing it 3 days a week (bid) with Azyth 4 days a week (bid). Link to comment Share on other sites More sharing options...
mommakath Posted March 3, 2011 Report Share Posted March 3, 2011 Dd10 is on tindamax on weekends only, Augmentin and zithromax the others. Because the tindamax makes her tired and dizzy, we have been giving her the 500mg. all at once, in the evening Saturday and Sunday. For several weekends now, we have noted that she is 100% (or nearly) on Sundays. (About 85% the rest of the time, with some short but powerful OCD contamination freak-outs). Anyone else have this experience? Herxing, if we should assume it is that, seems to be randomly occurring mid to late in the week. Wondering if this is just because it is the weekend and sleep, food, etc. are all better controlled on weekends? Otherwise, I might be a fan of daily tindamax!!! My sweet ds12 has started herxing more and more and it is not on the weekend....more mid week as well. Thinking we may have to lower dose. Link to comment Share on other sites More sharing options...
momaine Posted March 5, 2011 Report Share Posted March 5, 2011 I haven't been able to find a pattern to it that is consistant. THe first two week-ends, I felt like she was better on the Tindamax days and worse a couple days later. The next two week-ends, it seemed like she worsened by the second day taking it. This last week-end (5th time) she got worse when she took it and continued to get even worse over the next few days, worse than she had been since a week into lyme treatment, but not as bad as before LYme treatment. It scares me. I'm hoping its the herx before the healing, not backsliding. (anyone want to chime in here?) It's also been a while since her last ivig. (3 months because of insurance change and scheduling issues on my end) I feel like we are on the right track though, because she has had two lyme rashes since starting lyme treatment. The first one was a week into treatment and the second was about two weeks later. Link to comment Share on other sites More sharing options...
laure Posted March 5, 2011 Author Report Share Posted March 5, 2011 I experimented by giving her a dose tonight ( friday) and she has 2 hockey tournament games tomorrow...so I'll surely know if it helps or hurts as far as immediate impact. I'll post on Monday about it. Link to comment Share on other sites More sharing options...
sf_mom Posted March 11, 2011 Report Share Posted March 11, 2011 (edited) I wanted to mention that I too feel better while on tindamax. I just discussed this with our LLMD today. He said that its 'probably' because I have babesia as well. The cross over effects of tindamax helps to treat the babesia.... hence feeling better. I also have other identifying systems. Deep thigh bone pain is a unique symptom Babesia and I have that symptom along with red freckles. Negative results. -Wendy Edited March 12, 2011 by SF Mom Link to comment Share on other sites More sharing options...
NancyD Posted March 12, 2011 Report Share Posted March 12, 2011 My DD is doing better since going back on Tindamax 3x/week bid. she had been on it for 4 mos and we tried stopping it but there was definitely some backsliding. More than just normal herxing. She even started complaining that her hair was falling out again. We'll also do PCR testing for Bartonella and Babesia this week. I too have had backsliding in the past two weeks (significant fatigue, headaches, numbness in joints) so I am starting Tindamax in a few days. Also adding in carnitine and CoQ10. One thing interesting I have noticed -- I don't know if it's coincidence or tied to the Lyme treatment...I have had bad nose bleeds for years (ever since I was a kid). In the past year or two I got them daily year round -- usually in the shower. Something about the hot steamy water brought it on. Well ever since I started Lyme treatment 4 months ago I have had only one nose bleed and that was this week when my other Lyme symptoms were worse. Anyone know anything about nose bleeds and Lyme (or other co-infection)? Nancy Link to comment Share on other sites More sharing options...
laure Posted March 14, 2011 Author Report Share Posted March 14, 2011 I wanted to mention that I too feel better while on tindamax. I just discussed this with our LLMD today. He said that its 'probably' because I have babesia as well. The cross over effects of tindamax helps to treat the babesia.... hence feeling better. I also have other identifying systems. Deep thigh bone pain is a unique symptom Babesia and I have that symptom along with red freckles. Negative results. -Wendy Interesting...she had a fine weekend, only falls apart when really really tired. And then she really really falls apart. We had to change all the pillow cases in the hotel room, and room service couldn't come in at all. Great play in hockey tournament though, and as usual, amazing Sunday and Monday! Wish she could stay on tindamax all the tiime! As for thigh pain, no clue...she is always complaining about some ache or pain, and then goes outside and runs/ripsticks/cartwheels a mile around the neighborhood. Oh, and new "evening up" OCD, right hand, left hand stuff...she has to touch the mouse key with both hands... How are your kids coming along? Link to comment Share on other sites More sharing options...
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