Hi reminder -
I'm sorry you're going through a rough time. It's a tough decision to start, maintain and continue abx--and a LOT of lyme treatment, for that matter. It's hopefully the toughest experience we will all have to face.

I see you're relatively new here but I've not been around for awhile so I apologize if these are questions you've already answered but anyone who takes abx MUST also take precautions to prevent these side effects. No matter how long or short your protocol, and no matter if the protocol is abx Rx or herbal, in order to avoid the side effects you need to incorporate a few more things in your protocol and many--too many--MDs are clueless about this.

So - are you also taking probiotics, antifungals and liver and kidney support supplements? MOST of the time, a few simple supplements can curb nearly all of those side effects. Let me/us know if you'd like some suggestions on that front. I've been on both sides--the overwhelming side with unmanageable symptoms and with some intervention I've shifted all the way to being able to take abx in large doses w/out any side effects.

And, you'll probably see people post this frequently here but no matter what your treatment, detox is a must and a lot of times when people hit a wall or get overwhelmed, increasing or changing their detox regimen helps.

The "heart flubs" are a different issue. I think people are sensitive to some abx and this can cause issues w/ heart symptoms. I think some people have pre-existing and undiagnosed heart issues that come to surface during this very intense lyme treatment. And, I think people experience heart symptoms because the treatment is getting to the infection in the heart, which is required in order to fully heal. And there are probably other scenarios--each of which requires a specific approach when abx are involved. What does your LLMD say about your heart issues? Have you seen a cardiologist?

And have you tried herbal abx? A lot of LLMDs have lymees on a hybrid of both--mine does. I wanted to stick w/ all herbal tx but didn't have much luck for lyme so I started abx for lyme. Every time I try herbs for bart the herbs launch me into attacks, so they seem too powerful right now so I'm taking vanco for bart. But I fully expect to switch gears at some point. Many protocols morph and evolve over time in order to respond to your body's changing conditions (infection level, level of immune function, health improvement, etc.) so maybe it's a good time to make a change.

Hope this helps -

-p

Hi reminder, I'm just a little past where you are. And I quit AB a couple weeks ago, at least for the forseeable future. Going with herbals and getting my body back to health (with a renewed emphasis on diet, diet, diet) so my immune system can be like Rocky when he gets to the top of the steps.

Going to try colon hydrotherapy next week for something new!

Listening to all these speakers in the Lyme summit has just renewed my resolve that this is the right direction for me.

Good luck to you and maybe some of the Lyme summit information would be helpful for you to read, too.

Thank You,

Now I wonder if more blood tests for more co infections should be done?

r

Unfortunately, I think most people with lyme have co-infections and the diagnostic tests are just as bad--if not worse--than for lyme. And they're expensive.

My LLMD suspected Bartonella and administered a Fry Labs, which came up positive for something--unidentified per Fry but understood to be bart. What I thought were my most serious symptoms she thought were from Babs (although that changed over time.) We had the babesia duncani and microti tests done and they came up negative (there are several strains of Babs not picked up in most tests). I was so weak when we started treatment that I couldn't tolerate the low doses Byron White formulas she put me on for all three so we focused the majority of the treatment on only on the lyme and waited to make progress. And we didn't even start that until my viral and fungal load was well under control (which took a couple of months). Have you been checked for viral loads?

I'm now still treating lyme but have introduced an abx for bart. In a couple of months I hope to graduate back to A-Bart (just the opposite of some people--I tolerate IV abx well but the herbs really blow up my sx--perhaps because herbs are ingested and my GI has been hardest hit w/ these infections, IV can bypass that direct hit) and start focusing on Babesia. BTW, I've been in tx 2 years now... She also suspected I had one or two additional co-infections (mycoplasma and maybe erlichia) but we weren't going to treat for them until we made progress with the 3 Bs so we didn't even test for them yet.

I know a lot of LLMDs sometimes shift focus to the dominant infection, which can change overtime. Our bodies are always changing, the treatment and its impact on our bodies, our health, the infections--all are dynamic and that's why it's important to be really connected with your symptoms on a daily basis and keep track of them--so that you/LLMD can know when to shift gears.

I'd chat w/ your LLMD about your concerns and see what he/she says. My guess would be that if you are having heart issues with any treatment, it might be wise to hold off adding more to your protocol until you advance with the current protocol a little more and make progress without heart sx. If the heart issues continue and/or are serious, it might be a good idea to break down your protocol and figure out if something is triggering the sx (the same food elimination process as if you were trying to figure out a specific food you were reacting to).

I also should have mentioned that there are quite a few posters here who take no Rx abx and have an entirely herbal protocol and they're doing really well. Some started out on herbs, some switched from abx to herbs (and of course the reverse is true, too). Unfortunately, it takes trial and error sometimes to know what is your best and most beneficial protocol but there are great resources here, thankfully.

However it turns out - please let us know, stop in and give us an update. We all learn from each other and of course we're interested in knowing about your progress.

Hope this helps -
p

Post Edited (Pirouette) : 4/9/2016 9:15:17 AM (GMT-6)

Pirouette said...
I also should have mentioned that there are quite a few posters here who take no Rx abx and have an entirely herbal protocol and they're doing really well. Some started out on herbs, some switched from abx to herbs (and of course the reverse is true, too). Unfortunately, it takes trial and error sometimes to know what is your best and most beneficial protocol but there are great resources here, thankfully.

Thank you for your wonderful post, Pirouette - you really paint a picture for these infections and I think it's very helpful.

In regards to what I've quoted, I cannot agree more about the trial and error. A skilled LLMD can help cut things to the chase but I'm seeing that the very skilled LLMD's just aren't as available as anyone would like...and they're very expensive as can be the treatments.

My LLMD released me in October after supporting me through 8 months' worth of herbal protocols. He couldn't advise me because he knows nothing about herbs and left the door open if I ever want to go back on abx.

I got myself to 98% (he got me to 90% on abx)....that represents almost a year on herbals plus a recent stall I believe was caused by my thyroid going wonky and refusing to response to thyroid dose increases.

Yes, a convoluted story as many can be told.....and step by step we climb the mountain (even if we have to stay on a particular step longer than anticipated)

don't want to hijack the thread --- but cd do you have a thread you can point me toward that describes your journey and abx and graduation toward herbs and from your LLMD? I am interested in learning more.

-p

awesome - thanks

-p

Hugs reminder...i want more testing too...i feel that bart and myco are playing huge roll in wasting and health...i saw girlie had to take abx hiatus but treatment resolved liver stuff...have you done glutithione nebulized or iv?