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Antibiotics again - please help me make my mind up!
Hello gals,
After my whopping awful relapse, I've spoken to the lyme doc, who proposes a new antibiotic protocol aimed at tackling bart, as well as lyme.
I've got major bart symptoms, can't walk properly cos of a very bad knee, and chlamydia pneumonia is reactivated in my heart, making me out of breath adn have scary heart-thumping most of the time.
The abx are clindamycin, doxy and rifampicin. Anyone used that protocol? Any opinions?
I've been off abx for a year, after taking 2 years of a different protocol. I made progress in the first year but stayed at a plateau for the second year of abx, and gradually got side effects that were so unbearable I gave up.
With this horrible relapse and a new protocol, it does make sense to try again, I think. Yet I feel a lack of optimism about it because it just didn't work last time.
It's also going to be really expensive and that's partly what's making me dither about it.
I have been thinking maybe I'll give it 2 months as a trial, to see how much it actually helps, and then decide if it's worth continuing.
Does that sound reasonable?
Do you think it's realistic to expect some results in 2 months?
After my whopping awful relapse, I've spoken to the lyme doc, who proposes a new antibiotic protocol aimed at tackling bart, as well as lyme.
I've got major bart symptoms, can't walk properly cos of a very bad knee, and chlamydia pneumonia is reactivated in my heart, making me out of breath adn have scary heart-thumping most of the time.
The abx are clindamycin, doxy and rifampicin. Anyone used that protocol? Any opinions?
I've been off abx for a year, after taking 2 years of a different protocol. I made progress in the first year but stayed at a plateau for the second year of abx, and gradually got side effects that were so unbearable I gave up.
With this horrible relapse and a new protocol, it does make sense to try again, I think. Yet I feel a lack of optimism about it because it just didn't work last time.
It's also going to be really expensive and that's partly what's making me dither about it.
I have been thinking maybe I'll give it 2 months as a trial, to see how much it actually helps, and then decide if it's worth continuing.
Does that sound reasonable?
Do you think it's realistic to expect some results in 2 months?
Bummer about the food intolerances & allergies. Bart really messed up my gut, too.
And I mentioned the wrong tummy bug. I had campylobacter along with h.pylori. I think they were opportunistic, as I didn't have consistent control over my stomach acid levels or digestion for many months.
High Lyme titers isn't all bad news. It means your antibody levels are quite high, which means your immune system is fighting back hard. Negative or low Lyme titers mean you have few antibodies, which means (if you do have Lyme), that your immune system isn't fighting back well at all.
Schaller says that Bart is immunosuppressive, and he believes that the presence of Bart makes it more likely to test false negative for both Lyme and Babesia (true for me). If your immune system is fighting back, that suggests that Bart doesn't have the same hold it used to.
Keep up the fight! ;)
And I mentioned the wrong tummy bug. I had campylobacter along with h.pylori. I think they were opportunistic, as I didn't have consistent control over my stomach acid levels or digestion for many months.
High Lyme titers isn't all bad news. It means your antibody levels are quite high, which means your immune system is fighting back hard. Negative or low Lyme titers mean you have few antibodies, which means (if you do have Lyme), that your immune system isn't fighting back well at all.
Schaller says that Bart is immunosuppressive, and he believes that the presence of Bart makes it more likely to test false negative for both Lyme and Babesia (true for me). If your immune system is fighting back, that suggests that Bart doesn't have the same hold it used to.
Keep up the fight! ;)
Interesting about the cholestyramine, Wonko. Thanks for that tip - I'll ask my doc about this at the next appt.
Also, thanks for the heads up about Rifampicin, Rico.
I do think you're right about the headache being a bart herx, I think most of my troublesoms symptoms are more due to bart than lyme. In fact bart seems to have been more of a problem for me than lyme for a long time (even though blood shows my lyme titers are super high)
Anyway, I seem to have developed an intolerance/allergy to every fruit in existence on top of all my other food allergies, so figuring out what tummy pains are caused by is hard, but I have got a hunch that the reason the allergies have gone mad is that bart causes tem somehow. I've seen too many ups and downs of bart symptoms, with food allergies coming and going (in number and intensity) in perfect parallel to it.
Anyway I'll see how it goes and ask for a switch if the pain continues. Last time I took rifadin I was fine, in fact my tummy improved greatly after the initial phase. But I am on 3 times the dosage this time...
Also, thanks for the heads up about Rifampicin, Rico.
I do think you're right about the headache being a bart herx, I think most of my troublesoms symptoms are more due to bart than lyme. In fact bart seems to have been more of a problem for me than lyme for a long time (even though blood shows my lyme titers are super high)
Anyway, I seem to have developed an intolerance/allergy to every fruit in existence on top of all my other food allergies, so figuring out what tummy pains are caused by is hard, but I have got a hunch that the reason the allergies have gone mad is that bart causes tem somehow. I've seen too many ups and downs of bart symptoms, with food allergies coming and going (in number and intensity) in perfect parallel to it.
Anyway I'll see how it goes and ask for a switch if the pain continues. Last time I took rifadin I was fine, in fact my tummy improved greatly after the initial phase. But I am on 3 times the dosage this time...
I am so glad you're seeing results! I just thought I'd warn you that the tummy pain I had on Rifampin wasn't a herx. It was a side effect and it never went away. I did have other stomach problems to deal with, including crypto and h.pylori. But even after I was treated for them and for parasites, some stomach pain remained. It reduced significantly when I stopped the Rifampin. I stuck with it as long as I could... 2 1/2 months, before switching.
Besides Rifampin & Levaquin, there are some intracellulars that also work against Bart, such as the Biaxin/Plaquenil combo and Clindamycin. The headache on Clindamycin could have been a Lyme herx, but it could also have been a Bart herx. I mention this to say you don't have to suffer with chronic stomach pain on Rifampin indefinitely. There are other options if it doesn't go away. I am very glad to hear it's working!
At least you can give your doc credit for being willing to learn. I don't think any one doc knows everything there is to know about treating all this cr@p!
Besides Rifampin & Levaquin, there are some intracellulars that also work against Bart, such as the Biaxin/Plaquenil combo and Clindamycin. The headache on Clindamycin could have been a Lyme herx, but it could also have been a Bart herx. I mention this to say you don't have to suffer with chronic stomach pain on Rifampin indefinitely. There are other options if it doesn't go away. I am very glad to hear it's working!
At least you can give your doc credit for being willing to learn. I don't think any one doc knows everything there is to know about treating all this cr@p!
Everyone is different and your doctor may not use it, but I found that cholestyramine helped me tolerate antibiotics much better. It's label purpose is for cholesterol, but off-label my LLMD thinks it can help the body get rid of the die-off from Lyme treatment. You may want to ask about it at your next appointment.
Hope you feel better soon.
Hope you feel better soon.
Just a little update to say, I'm on 2 of the three antibiotics now. Had a headache herx from Clindamycin for 4 days, that has passed, now I'm having a monster tummy-pain herx from Rifadin. Painful but manageable, and reassuring that they are really working.
And I am feeling definite improvements in the symptoms. My knee joint is almost back to normal. I can go upstairs with minimal creaking and moaning. My heart is behaving. Overall I'm feeling a bit more human.
Generally much more optimistic about doing this...
And I am feeling definite improvements in the symptoms. My knee joint is almost back to normal. I can go upstairs with minimal creaking and moaning. My heart is behaving. Overall I'm feeling a bit more human.
Generally much more optimistic about doing this...
Y,
I know you don't need any more upheaval in your life, but when I read your comment, "My doc said he learnt it from several docs in America with a lot of experience curing bart, and he said he's been using it since last summer and getting great results", I worry a bit.
It's good that he's willing to learn, but you've been on that road with him for a long time, and it sounds both inconvenient and expensive to travel to see this fellow, and it sounds like he's groping through it all. Have you considered switching docs?
------
On another topic, I also kept a medical diary on my computer, since my brain was fogged in, and even when not foggy, the mind rewrites history in ways that probably worked for our prehistoric ancestors, but not so much for me. Some docs don't like to be handed a chart like that before an appointment, but some do and will spend 5 minutes scanning through it.
I had a columns on my chart for date, meds, how I felt, how I was sleeping, and misc other. Before each appointment, I would review my diary and summarize the events since the last appointment, with notes about the big points and questions I had. I look back at my personal chart sometimes now and am amazed at the stuff I have forgotten about my adventures with Lyme & Co.
Just a thought. Best to you -- I know you've been on this road a long time.
I know you don't need any more upheaval in your life, but when I read your comment, "My doc said he learnt it from several docs in America with a lot of experience curing bart, and he said he's been using it since last summer and getting great results", I worry a bit.
It's good that he's willing to learn, but you've been on that road with him for a long time, and it sounds both inconvenient and expensive to travel to see this fellow, and it sounds like he's groping through it all. Have you considered switching docs?
------
On another topic, I also kept a medical diary on my computer, since my brain was fogged in, and even when not foggy, the mind rewrites history in ways that probably worked for our prehistoric ancestors, but not so much for me. Some docs don't like to be handed a chart like that before an appointment, but some do and will spend 5 minutes scanning through it.
I had a columns on my chart for date, meds, how I felt, how I was sleeping, and misc other. Before each appointment, I would review my diary and summarize the events since the last appointment, with notes about the big points and questions I had. I look back at my personal chart sometimes now and am amazed at the stuff I have forgotten about my adventures with Lyme & Co.
Just a thought. Best to you -- I know you've been on this road a long time.
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