Changing abx

[NancyD]

DD15 has been undergoing Lyme treatment for 6 months (PANDAS treatment for 8 years). She is on Azith, Tindamax (3 days/week), Augmentin XR, Diflucan, and 16 different supplements. Also does detox. Physical symptoms are greatly improved, although she still has excessive hair loss. Tics and violent rages are 100% gone (thanks to Augmentin XR and IVIg) but her anxiety and scrupulocity are no better. In fact, I think they have gotten worse. Herxing comes in waves -- some fatigue but mostly mood issues. Just did PCR testing for MycoP, Bartonella, and Babesia -- they came out normal. MycoP IgG titers are still high. And her last CD57 was 23. I'm thinking DD may have Bartonella. By the way, I did not see any improvement after doing two HD infusions in December and January. Usually see improvement in 10 weeks but not this time...so no more IVIg in the near future.

 

I have been undergoing Lyme treatment for 5 months. I am on Doxy, Tindamax (3 days/week), and 17 different supplements. My symptoms were acute in the beginning but I am doing fairly well now. Joint problems and brain fog seems to be gone, occasional numbness, excessive hair loss lately, and fatigue still a problem. Herxing comes in waves -- mostly increased fatigue, some vision problems. I have a history of retina problems (2 detached and lots of tearing and holes) and foot problems (2 surgergies in last 3 years for plantar fasciitis and bone spur). Plantar fasciitis seems to be coming back in the same foot. Now I'm thinking maybe I have Bartonella. Will do PCR testing for co-infections. My last CD57 was over 100. MycoP IgG still high.

 

We decided to change course with DD's abx. She'll stay on Tindamax but we'll try switching Azith and Augmentin XR to Rifampin and Biaxin. And yes, we will stop Milk Thistle while she is on Rifampin. We'll substitute with Curcumin. For those who are taking Rifampin and Biaxin, how long before we should be seeing any improvement (if any) with anxiety and OCD? My daughter is very depressed over it and she is feeling pretty desperate. I had her sleep with me last week because I was really worried about her being alone.

 

Doctor has also suggested buying a portable sauna -- Susan (or anyone else), how do you like yours and which are you using? How often do you and the girls use it, and do you find it helpful? Doctor also suggested adding in ALA, which I found to be helpful when DD detoxed years ago with DMSA chelation.

 

All thoughts/suggestions welcome!

 

Nancy

[sf_mom]

Nancy,

 

I am so happy you are making the rotation!!! Be prepared because I suspect she will herx.... both antibiotics cross the BB very effectively. Don't be shocked if the rages reappear day 3 to 4 and around the one week mark again. Have the Advil ready. Of course watch for the rashes as treatment proceeds. My girlfriend saw huge improvement within 16 weeks on the combo BUT that is not always the case and many take longer. I think they saw rashes in the 4th month. He is still being treated for Bartonella and its been about 10 months now and Dr. thinks its still there.

 

I just want to jump for joy about your cd57 results. You've got to be feeling a little better. I'll admit I was doing so much better until they started treating me aggressively for Babesia and I am working my way out of a herx. So, expect things to change if they do go after Bartonella for you too.

 

Keep us posted on the herx.

 

-Wendy

[NancyD]

Hey Wendy,

 

I'm thrilled too...I've been wanting to make this switch for a while. Thanks for the heads up regarding both abx. I will brace myself for the rages to return. Darn, no drinking while on Tindamax! We should be able to start the Biaxin right away but I believe we will have to get the Rifampin compounded. Our pharmacist could not locate it dye free. Is yours dye free?

 

I think I herxed for about 3 weeks after starting the Tindamax so I'm glad I finally have enough energy to stay awake past 8pm!

 

Neither of us have seen any rashes since starting treatment for Lyme. Perhaps we will with the change in abx. Dr wants me to run co-infections first but he may also put me on Rifampin.

 

I'm so glad to hear you and the kids are making progress. I've seen a few of your posts. I don't know how you do it with so many in your household having TBI! You're my hero, Wendy!

 

Nancy

 

Nancy,

 

I am so happy you are making the rotation!!! Be prepared because I suspect she will herx.... both antibiotics cross the BB very effectively. Don't be shocked if the rages reappear day 3 to 4 and around the one week mark again. Have the Advil ready. Of course watch for the rashes as treatment proceeds. My girlfriend saw huge improvement within 16 weeks on the combo BUT that is not always the case and many take longer. I think they saw rashes in the 4th month. He is still being treated for Bartonella and its been about 10 months now and Dr. thinks its still there.

 

I just want to jump for joy about your cd57 results. You've got to be feeling a little better. I'll admit I was doing so much better until they started treating me aggressively for Babesia and I am working my way out of a herx. So, expect things to change if they do go after Bartonella for you too.

 

Keep us posted on the herx.

 

-Wendy

[Suzan]

Nancy, I am very glad to hear you are doing better even though you still have a ways to go for yourself. I hope the change in meds is what your dd needs to help her, I am sorry she is having a hard time still.

 

As far as the sauna goes, we love it! We all use it. The girls don't sweat much in it yet but I'm hoping that will change. They don't use it often enough now that it's warming up. I didn't sweat in it in the beginning either but now I do like crazy! I guess it helps with detox just from the sweating process, but I find it helps with herxing. When I just don't feel well, I hop in there and it's like a huge heating pad. I want to use it every day but in reality now it's probably once a week since I'm feeling better but when I'm crummy, every day helps a lot.

 

This is not where I bought it from but this is the same one....

http://www.amazon.com/Deluxe-X-large-Infrared-Portable-Weight/dp/B0027831QS

 

I don't know if I got the extra large one (it doesn't seem that large) and unless you are a very tiny person, I would recommend the x-large.

 

My LLMD also recommends ALA and I take it daily.

 

Susan

[NancyD]

Thank you, Susan, for the info on the sauna. I will check that out. Is that only big enough for one at a time? I would love to have one that fits both DD and myself. Having a hard time picturing what it looks like inside. I wonder if there is a place where I can go to check them out (and then buy online). Our doctor has one at his office, which I will check out. I think it's more expensive though (~$750). I love using a sauna so I think I would get good use out of it, particularly on days when I don't feel like taking an Epsom Salts bath.

 

Nancy

 

Nancy, I am very glad to hear you are doing better even though you still have a ways to go for yourself. I hope the change in meds is what your dd needs to help her, I am sorry she is having a hard time still.

 

As far as the sauna goes, we love it! We all use it. The girls don't sweat much in it yet but I'm hoping that will change. They don't use it often enough now that it's warming up. I didn't sweat in it in the beginning either but now I do like crazy! I guess it helps with detox just from the sweating process, but I find it helps with herxing. When I just don't feel well, I hop in there and it's like a huge heating pad. I want to use it every day but in reality now it's probably once a week since I'm feeling better but when I'm crummy, every day helps a lot.

 

This is not where I bought it from but this is the same one....

http://www.amazon.com/Deluxe-X-large-Infrared-Portable-Weight/dp/B0027831QS

 

I don't know if I got the extra large one (it doesn't seem that large) and unless you are a very tiny person, I would recommend the x-large.

 

My LLMD also recommends ALA and I take it daily.

 

Susan

[Suzan]

Nancy, this just fits one person, your head sticks out of the top, it zips up around your neck. I like that your head is not in the heat because I don't like to breathe in the hot air. I have not seen a portable one that is for two but maybe they are out there. I was also looking at infrared products that are like heating pads. I think we wolud benefit from that too for herxing.

 

Susan

[sf_mom]

Our Rifampin is compounded too.

 

I can assure you...... you will not want to drink while on Tindamax. A glass of wine means at least a two nap the next day. It took about two weeks of daily tindamax to feel better and then I felt great. We are pulsing now 6 weeks on, 3 weeks off. I'm in an off cycle now and hopefully will enjoy some wine this weekend without too much of a downside.

 

-Wendy

[NancyD]

I'm glad your head sticks out, Susan. Otherwise it might feel a bit claustrophic. I'll investigate all options. Thanks!

 

Nancy

 

Nancy, this just fits one person, your head sticks out of the top, it zips up around your neck. I like that your head is not in the heat because I don't like to breathe in the hot air. I have not seen a portable one that is for two but maybe they are out there. I was also looking at infrared products that are like heating pads. I think we wolud benefit from that too for herxing.

 

Susan