momaine

My daughter is being treated for Bartonella but not with Rifampin. She gets a rash regularly now, after she takes a long hot shower. It is usually on her legs, sometimes it is red/purple with white splotches that have red centers, but other times her legs are just all red, like small dots all connected together. I used to think it was from the Lyme rather than the bart because it didn't look like stretch marks, but one time it did look like stretch marks and it was on her bottom. Maybe that was a one time bart rash? Not sure, but knowing there is die off does make me feel confident that we are on the right track. It's slow going though.... I take Rifampin for Bartonella and my urine turns orange very quickly. You are supposed to take it on an emtpy stomach so it goes into your system quickly. I have not had any problems with this medication other than the urine discoloration. Good luck.

La Quinta near Dr. Jones was only around $70 when we stayed there. It was clean and comfortable.

My dd's appetite really picked up during and shortly after taking steroids. It could be that.

I've added the Minocin back in and I'm fine. I guess it was a stomach bug. Thank God. I was very worried about having to switch up drugs again. Had a herx from the Rifampin, but now my head is nice and clear. My ankles are still killing me but not quite as bad as yesterday so I'm hoping tomorrow will be even better. I am so happy to be feeling better! I didn't realize how sick I was with lyme/bart because the symptoms really crept up on me. Now that I'm feeling better, I realize how sick I was.

When my dd had only a pandas diagnosis, the first 3 hd ivig were miraculous. After that, the next two, not so much. But then we got the lyme/bartonella diagnosis and started lyme treatment. The first one after lyme treatment didn't make a noticable improvement, but we are now a few weeks post the second hd ivig after being on lyme treatment for 12 weeks before, and dd began showing improvement again sometime in the second week post ivig. (which was typical with her other ivigs) She's been holding that improvement steadily for maybe two weeks or so. (knock on wood) I feel that her ivigs have been very helpful. It's hard to know with the ones that didn't obviously help, what the reasons were. Would she have been even worse without them? maybe. They certainly didn't make her worse.

I'm supposed to be taking both but I haven't taken the Minocin again yet because I wanted to add one thing at a time back in and see how my stomach did. I'm fine today with the Rifampin. (except the horrible foot and ankle pain from a herx) Tonight I'll probably add the Minocin back in since if it is a stomach bug, it seems to be mostly gone. I've eaten pretty much what I've wanted today with no problem. I hope it was just a bug because I really would hate to have to switch up drugs again. Thanks for chiming in.

Hi, I took Doxycycline for over a month with no stomach issues whatsoever. THen I switched to Minocycline and I took it for 2 or 3 days with no problem. On Saturday my daughter vomited up all her drugs (very unusual for her). She was pretty much fine after that but did say she didn't feel 100% even the next day. So Sunday, I woke up and took my medication, as usual, and ended up feeling horrible. I figured I got what my dd had. I was supposed to start Rifampin that day but because my stomach hurt, I waited unti Monday morning. I took both the Minocin and the Rifampin Monday morning. My stomach began to hurt more over the course of the day. Very gassy. But it felt ok that night so I took my drugs again. Tuesday I felt HORRIBLE. Other than the stomach ache, it felt much like I feel when I herx. Exhausted. Slept off and on all day. Stomach was horribly gassy. Felt really sick but still coudl eat...in fact food made me feel better for a time. Did not take any drugs Tuesday night. Did not take Any Wednesday morning because I stil felt horrible. All Wednesday I felt pretty horrible until Wednesday evening. Felt better last night. Took the Rifampin before bed but that is it. Felt fine sleeping. Am up this morning and stomach feels fine so I took the Rifampin again. (stomach already hurt before I ever took the rifampin, so I figured it wasn't that) Do it sound like a stomach bug to you or maybe the Minocycline? Would it take 24 hours to feel better once I stopped it? My gut feeling is it was a stomach bug, but not sure.

It could be a herx. What have you tried for sleeping? Melatonin? Benedryl? (I eventually got some Ativan to give on the really bad nights, which helped but I don't want to use it every day because its habit forming.)

Lyme and Bartonella can cause heel and ankle pain. Those were two of my worst symptoms. I am being treated for both and my heel pain is probably reduced at least 50% less than 8 weeks into treatment and my ankle pain is mostly gone. The other lyme symptoms I was able to explain away but now that I am being treated, I realize what it feels like to feel normal again and I now just know that I didn't realize just how sick I was because it creeps up on you.

Wilma, There are more than one drug that can eradicate both lyme and bartonella. My dd and I are both being treated for lyme and bart and we are both on different medications. I think you really need to find a lyme doctor and a pandas doctor that you trust and that are willing to work together and then put your trust in them helping your daughter. For sure, double check everything that they put her on, and ask lots of questions, but trust is important. My dd and I have different lyme doctors who are treating us differently, but both courses of treatment can eradicate the diseases and I trust both doctors. If one can't tolerate one drug, thankfully there are other options. Right now I'm struggling with stomach issues and I'm not sure if it is a bug I've caught or from the antibiotics. And I'm herxing on top of that with brain fog and fatigue. Ugh! Didn't I read that you were going to take your dd to Dr. J? Have you been yet?

So happy for you! Keep up the detox.

That is good to know. I'll pass that on to my bil.

My bil is finally heading to a llmd next week. I am thrilled for him. His main symtpoms have been hearing loss, vertigo, dizziness, etc. (he has a lot of other lyme symptoms now too) He has been to many well know hearing specialists and he was diagnosed with Meniere's Disease. Meniere's Disease is progessive however, and his hearing loss comes and goes. They told him it was all in his head when he asked them to explain how it could possibly get better. It seems to cycle, similar to lyme symptoms and I'd bet a huge amount of money that he has Lyme Disease. I'll let you know when I find out more. I'm so anxious for him to get the help he needs and get his life back.

My dd is about 16 weeks into lyme/bartonella treatment. I am 5 weeks into treatment for the same thing. We have different doctors and different drugs but both choices can work to eradicate the infections. Dd is on Azith, Augmentin, Minocin, and Tindamax on weekends. I just switched from Doxy to Minocin due to sun issues. I'm adding Rifampin in a couple days and in two weeks I'm adding Flagyl. I'm allergic to Augmentin and other penicillian drugs. The Augmentin caused a hellofaherx before I discontinued it though. good luck

Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well. She is on 150mg of zoloft right now. It is suppose to help with the OCD and did before we started the antibiotics. Even at that high of a dose, she has OCD and depression. If you end up taking a break, Dr. J doesn't recomend you do so for more than 2 days. I would really really advise you to talk to Dr. J. The antibiotics are what will eventually make these kids well. Are you doing detox? I know its a long road. He said most people see improvement within 16 weeks and at the outside, 6 months. I hope you get through it okay. I know how hard it is. We are just now seeing a tiny bit of improvement almost 16 weeks into treatment. (and still doing IVIG with Dr. B. ) It's giving me hope though.

I thought about trying one of those. Let me know if your symptoms begin to lessen after you've used it for a while.

I'm really sorry to read this. My dd too wishes she were dead sometimes. It's really really painful to hear. My LLMD suggested Glutathione for detox. 500mg once per day. The two day break we took helped a bit. Thankfully, my dd FINALLY seems to be improving..slowly..almost 16 weeks into lyme treatment and in the second week post 1.7 g/kg IVIG. Here's hoping it continues and I didn't just jinx us!

ha ha.. she showers and takes epsom salts and rubs them all over her body. EVERY time she does this she gets a die off rash.

This is what we are doing for now: Buffered Vitamin C, helps with detox Glutathione (or N-Acytlecysteine, but be careful of yeast if you choose the NAC), helps with detox Resveratrol, helps with detox Epsom Salt Bath or shower, helps with detox (when we started Glutathione/NAC, Resveraltrol, and epsom salt showers, dd started getting die off rashed much more frequently) Multivitamin Vitamin D2 and B3 Omega 3's CoQ10 for energy

That is so exciting! I completely understand. I am so happy for you. I try really hard to give our antibiotics as close to 12 hours apart as we possiby can. It's rarely 12 hours, but I do my best. Breakfast as early as possible with the morning dose. Then the last snack of the night accompanies our night antibiotics. We are usually a good ten hours apart. Something to think about. My dd's two worst days are the two days following Tindamax. I time them during the week when I know she'll have the most support on those two days. So, we do Thursday and Friday because Saturday and Sunday are days when we have the most going on so she keeps busy and doesn't suffer as much.

I was a little worried the other day when we went to our family dr. We hadn't been in a while and although she had accepted the PANDAS diagnosis, I was a little concerned about her accepting a lyme diagnosis on top of that because I had emailed her asking if she would order an Igenex western blot for me and I never heard back despite 2 phone calls and an email. But then when we went there, she was fine about it. She really does what she can to help us with whatever we are asking, but leaves the PANDAS/LYME to our specialists. She was open minded about the existance of chronic lyme but not really into learning more about it, at this point. But I'm okay with that as long as she helps us with what we need at the time. So, my point was, in all this rambling, that I was worried that it wouldn't go well, but in the end, it was fine.

http://lpi.oregonstate.edu/infocenter/phytochemicals/curcumin/ Great information on Tumeric Supplementation. If you scroll down to Inflammatory Diseases, there are snippets about dosage used on some people in some trials.

Maybe I'll give that a try. I'll go read more about it. Thanks! I just ordered 500mg Tumeric from Walmart for $7 with no shipping costs. Do you have any idea how much is recommended?

Maybe I'll give that a try. I'll go read more about it. Thanks!

My Rheumy prescribed this for me about six months ago for my "Fibro" and because I told her that OTC NSAIDS were bothering my tummy. I took it once and didn't like the way it made me feel (BIG tummy ache & headache) so I've never been brave enough to try it again. Thanks for sharing your experience. I wonder if something like this could help our kids get through this?