Antibiotics again - please help me make my mind up!
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?
Sorry you are going through all of this. I have cured my babesia and my worse culprit is barts.
I am on rifampin, zithromax, doxy and a, rotation of flagyl. I was unable to walk when I started treatment. after a few month's I could walk with a
cane however this one is taking forever to cure. I
am still fighting
Barts for me is,neurological affecting vision, cognitive abilities etc.
You're dealing with some infections I didn't have and your doc is proposing some meds I didn't take, so my only response is a theoretical one: if nothing else has worked and you are still ill, and if you are satisfied with the doc's explanation of why this approach with these meds might work, then I would do it. Two months may not be enough to see progress -- I don't know. Perhaps say to your doc that you are willing to try it for [two] months and then revisit the issue, and see what the doc says -- "All right" or "Two months would not be long enough to see progress given your infections". From what I have read generally, the mixture of different infections can make the treatment more complex -- drug A for illness A and drug B for illness B may work unless there is some synergy between illnesses A and B that messes up the effect of drugs A and B. I just don't know.
But I would certainly have that discussion with the doc, so that you are fully informed of the doc's thinking and where the decision points are in the treatment. Sending you all good thoughts -- !
Mojogal I'm really sorry to hear your bart is so bad. I hope you get progress soon. If you reach a plateau, I think it's worth talking to the doc abot possibly switching to another antibiotic. The impact usually diminishes the longer you're on the same protocol. That was my experience and I made the mistake of sticking with it patiently instead of telling the doctor I wasn't seeing results any more. Just a thought.
Jackie thanks for all the v good points. Very sensible logic. I'll ask the doc about that next appointment adn see how he thinks I shoudl be looking at this.
I learn over and over with docs that most of them don't explain their reasoning for a particular course of action or treatment, partly because most patients don't care or don't understand, and partly because there is much subliminal decision-tree-making that docs do, sorting through the possibilities very quickly based on their education and experience.
It is like being a chef on a cooking show who says 'start with X, add this much Y, simmer for an hour, add this much Z and serve.' That fills up the entire show and there is no time (or for many of us, no reason) to walk through the decision tree aloud about why thyme instead of basil or whatever.
If your doc is really really busy, then I'm guessing s/he's moving quickly through the mental decision tree and doesn't remember initially that you want the details and thought process spelled out. Happens to me too, and if I insist on knowing why, the doc will tell me. Usually. ;)
I've been on all three of those meds, but not at the same time. I think Jackie's mention of a chef is a good analogy. I think each patient needs their own concoction, which evolves over time. There is a lot of trial and error involved. Drugs work differently in different people.
My protocol changed at every single appointment. As soon as I'd level out, the PA or doc would switch one or two of my meds. I started on Rifampin my 2nd week. I think it helped some, but it also made my stomach hurt worse and gave me heartburn. After about 11 weeks, I mentioned that my stomach pain just wasn't improving. I was switched to Levaquin and the stomach pain declined noticeably within 2-3 days. I also felt better on the Levaquin, and my anxiety disappeared. I had to stop Levaquin a couple months later when my Achilles' tendons started vibrating a bit and one of them (with scar tissue in it) cramped up hard on me. But the anxiety didn't come back. I am confident it cured my Bart.
I think Rifampin is the first choice drug and Levaquin is the second choice. Levaquin can cause tendon problems, so there's more risk with it. I didn't have any noticeable herx with either one, but I noticed more improvement within two months on Levaquin than in two months on Rifampin. You might ask your doc how long you should take the Rifampin before noticing improvement. Mine was gradual.
I don't think my Bart was as bad as mojogal's. I did have the "preponderance of neurological symptoms" that Dr. Burrascano describes, and lots of gut problems like Dr. Virginia Sherr describes (Bell's Palsy of the Gut), but the only other Bart indicator was anxiety. We used my anxiety as the marker for Bart treatment.
I took Clindamycin last fall for Lyme, and I had my worst herx up to that point on it. The day after I started it I had a huge headache, felt really horrible and couldn't do anything. I had to call a friend to take my young child for 1/2 day so I could crash. I didn't move for over 4 hours.
My PA explained that it's an intracellular abx, and with my neuro symptoms, I probably had a lot of intracellular Lyme in my brain. I've since read that it can also have an impact on Babesia. We didn't know at that time that I had Babesia, so I wonder in hindsight if the bad herx was a double herx.
I didn't notice any response on the Doxy. It's also an intracellular abx. But I did stash away my leftovers in case of a future tick bite.
Note: After a couple months on Clindamycin, I noticed my hair was coarse and falling out much faster than usual. Even my hair dresser noticed the texture change and thinning. She's the one who said it was probably because of meds. It got better after I stopped the Clindamycin. Thank goodness I stopped before I went bald.
I encourage you to start the meds one at a time (5-7 days apart). If you start all three at once and have a herx or a problem, you won't know which one caused it. I also recommend starting a new med at night, and then easing in to the full dose over the next couple days. Helps avoid a bad herx that can shut you down unexpectedly.
Or, you can always plan ahead so you have no responsibilities on the day you start, and start full dose. The bad herx can kick in several hours later or the next day or two. It's a little masochistic, but it tells you if it's working or not. Having done it this way, I don't recommend it. ;)
And my thoughts on your two months idea... I'd suggest you consider measuring your response to the meds rather than just giving it two months. Or, assume that if you see no benefit in two months, that you need to switch to different meds, NOT that you need to stop everything. Since you know you have Bart and Lyme is now back, you'll want to fight back before they get the upper hand. Once you level out, you should switch to a new med within a month or no additional improvement. For me, this was every 2-3 months. The only long term med was my Bicillin shots, which I did for nearly a year, minus a 10 week hiatus to rest my kidneys. Addtional note: I was always on two meds at a time for Lyme.
Have you taken a biofilm or cyst buster? If the Lyme is now suddenly worse, then you're definitely dealing with biofilms.
I am starting one antibiotic at a time - the doc always gives me a shedule for this - so I am only on clindamycin at the mo. I'm getting herx, I seem to be coming out the other side of it now - I hope! really awful headache and weakness, the headache is subsiding now.
I definitely want to take some biofilm busters as I am getting more convinced that willbe essential if I'm going ot beat this thing. my doc has prescribed artemisin for cyst busting and N acetyl cysteine for biofilm breakdown, but I have a feeling he is extremely cautious about using biofilm busters, perhaps too much so - or else he isn't really very up to date with info on it??? Don't know.
What have you used to biofilms and how did you get on?
What you said about constantly changing abx is so true and I dearly wish I had realised that earlier and been more emphatic to my doctor when I plateaued, that I needed to change.
Though he should have been checking himself, shouldn't he?
Anyway I've learnt the lesson now.
Both my son adn I have paid the price for sticking on the same antibiotics for too long and I won't make that mistake again.
Bad news about clindamycin ruining hair. I've already got about a quarter of the hair I used to have as a result of my thyroid deficiency. And what I have is all wispy.
Maybe I need to start looking at wigs?!!!
My hair got thin and wispy too, while I was being treated. I didn't pay much attention, till I got back my new driver's license with a photo that shows a faint ... pinkness of scalp through my hair! (And this same photo is on file with the state and will be used for years in future driver's licenses, ha ha ha! That's okay, it shows the bugs they are BEATEN.)
I've always had thick, healthy hair, so this was an interesting development, but frankly I would have been glad to go bald to get well. It didn't come to that, tho, and once treatment was done, my hair grew back in very thick and strong and healthy. Not to worry. A pretty headscarf can do wonder for an outfit.
From my previous post:
"Once you level out, you should switch to a new med within a month or no additional improvement. "
Sorry this should have said "...switch to a new med within a month OF no additional improvement." No need to switch out a med that's still working.
Sounds like you're on the right track. I am convinced that the people with long term Lyme who get well are the ones who take ownership of their care. I think that relying even on an LLMD to be proactive with us is a mistake. I think most doctors are reactive and respond to what we tell them. I think there just isn't enough time in any appointment for a doctor to ask enough probing questions to draw out all relevant info.
My doc makes all patients fill out two forms before going in to an appt. One is the Burrascano symptom check list. The other is one that lists symptoms down the left with bubbles to fill in going across for "Much worse, Slightly worse, No change, Slightly better, and Much better." It gives a great visual to scan and quickly see what's better and what's worse. Then he hones in on what's worse or unchanged and focuses on those issues. If your doc doesn't use a form like this, you could make your own short lists of symptoms that are worse, unchanged, and better. Be sure to keep a copy as it's really helpful to review the last one while filling out the new one.
Having a herx on a med, to me, is a good thing. It means the med is working. With no herx, it's hard to know except over time. I definitely have a love/hate thing with herxes.
MY hair falls out by the tons from hypothyroidism. I must say my doctor and I discuss and then change protocols fairly often. I had a bad herx from rifampin at first and that is why I go up so slowly on the doses. I am also on a 2 week rotation of flagyl for cyst busting and even though I have done this for several months, I didn't herx from it until this recent rotation.
If anyone has any othet med suggestions for barts, I would love to hear.
Rico, that symptoms checklist is a fantastic idea.
I think I'll prepare that on my computer so I can email it to teh doc before each appointment! I can certainly refer to it, to give a complete overview of the changes in my condition. Sometimes I getso bogged down in symptoms it's hard to give a clear impression of what has improved or what has got worse, and especially hard to recall over time how things change.
Youì're so right that we still need to take ownership of our care, even with a good LLMD. I made the mistake of thinking I could finalyl relax adn let him do the thinking and worrying for me. Not a good idea, with hindsight.
I'm so sad to hear how bogged down you are in all this.
If my new bart protocol goes well, I'll let you know.
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 sumer and getting great results.
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.
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...
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.
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!
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...
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.
Thanks for that encouraging info, Rico!
So far everything is going as usual, Ive got a very bloated tummy but not much pain. i seem to be on a platueau, but considering the stress with my son lately, that's actually very good going!
I've been on herbs for the last year. They were really great at first, then this big relapse.
I'm starting to think perhaps we just need to keep changing meds over and over, as anything stops working if you just keep on the same treatment for too long.
I'm keeping herbs in reserve as my plan B if the abx don't get any improvement, but right now I am in the mood for giving the heavy stuff another try. I've been getting cardiac symptoms back and having trouble walking, which is just not funny!!!
I have been changing abx when we think one is not doing anything. I also take some herbs along with since one of my friends sees Schaller and she was cured that way. I kind of follow what she did since she had Bart's and Lyme too.
I'd also like to know about Schaller. He's written a book about batonella and I am wondering about buying it. Is he pukka and reliable as a doc or a bit wild? I've read some pretty extreme criticisms on him online that presented him as a dangerous lunatic!!! Which rather put me off spending lots on the book.
But I'd realy like to understand bart a bit better and cannot find anything else at all.
What's your opinion?
and the search is made often enough that it popped up in the 'suggested search term' box.
I looked randomly at several of the linked posts/websites, and they were all of the Lyme denier category: angry, huffy people who think Lyme is all in our heads. There may be some more reasoned critiques of Schaller, but it would take some time going through all the links.
I take the view that every doc on the cutting edge is a target for this kind of criticism, and at least some of it may be valid. But since the angry Lyme-deniers are one screaming about it, I figure I'm not learning anything from it since I already know Lyme is an unraveling mystery and may be for some time to come.
So Schaller may go over the edge, but may still be worth reading for his views. Like Columbus, how do you know you've gone off the edge of the Earth until you get there and say 'ah ha, went a little too far.' And of course Columbus did just fine, tho he didn't get where he thought he would end up.
Some of the posts I read just now make harsh comments about some of the Lyme books I read when I was first diagnosed, and I wouldn't follow all of them all the way in their suggestions, perhaps.
So would I buy Schaller's book? Yeah, maybe and even likely, just to see what he has to say and where the edge of the earth is.
PS as an example, in my search for comments on Schaller, I ran across this comment that seems to hit the same tone as others I read.
The post is titled "A Reading List for Hypochondriacs and the Paranoid":
" 'The Lyme Disease Survival Guide: Physical, Lifestyle, and Emotional Strategies for Healing'- Connie Strasheim, with yet another forward by James Schaller. Apparently, this book is so bad even some Lyme activists hate it: There is a lot of opinion and conjecture being passed off as fact. There are no references. There is poor research…. There are dangerous recommendations. The humor falls flat. And if you're not a fundamentalist Christian, you may be offended by all the god-talk.”
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