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Posted 8/1/2015 1:25 PM (GMT 0)
Well, I know i need to see a LLMD... but I cant find one that would take insurance and dont have the money to see one right now, I am seeing a nurse practiticioner that dx me w/ lyme so I am thankful for that and she knows the lyme basics I like to say, but she doesnt get much into the abx... she put me on Amoxicillin, and every since I took it for 30 days (finished them 2 1/2 wks ago) I have just been going down hill... stiff neck, joint pain, miserable! I dont even have one symptoms free day any more....

Now I've read that Amox sucks for Lyme due to the way it just kills the wall of bb bacteria, and bb can live without a cell wall, soo my np said next we will try doxy, she hasnt wanted to put me on it because of the nausea and side effects. But then I've read doxy makes it go into cyst for so what do you pair doxy with for a cyst buster? I feel like I never hear of doxy paired with a cyst buster
Posted 8/1/2015 1:45 PM (GMT 0)
yeah, from what I've read you want to combo doxy with a cyst buster, especially for long standing infections. You could print up research and info regarding those treatments to let her know why you think you need those treatments. If she isn't willing to do help you on that you could also look into adding herbals as adjunct therapies, and hopefully you could eventually afford an llmd that you could work with? Some people do amazingly well on just the herbal therapy. I like abx/herbals, but I'm working from a deep hole so I need all the guns.

I think some people who can't access the meds they need end up ordering meds online as well (not sure if I should be mentioning this), this is a bit risky, don't necessarily advise this, and you should have a healthcare professional monitor your bloodwork as you take any meds. I see that option as a last resort kind of deal.

I think the other members will be able to better advise you on possible courses of action. Let us know if you'd like info on the herbal treatments, there are multiple protocols which can also be tweaked.

I hope you can access the proper treatments soon and continue on your journey of recovery! Hang in there!

Btw are you detoxing? that is a pretty important aspect of healing and helping manage meds and the disease.
Posted 8/1/2015 1:53 PM (GMT 0)
oh, also, with doxy, Traveler can hopefully get you details as she knows this stuff like the back of her hand, but you need to make sure you get a high enough dose so it reaches specific concentration levels, otherwise its effectiveness is compromised.
Posted 8/1/2015 2:23 PM (GMT 0)
Right I agree! She did mention a natural cyst buster, andiographs or something, I would like to do doxy and an herbal cyst buster. I would like to go all herbal as I healed my thyroid just from kelp... but I am unemployed and relying on my b/fs income. Thanks guys :-)
Posted 8/1/2015 2:27 PM (GMT 0)
gosh it's just the worst, all these treatments are expensive, but how can we pay for them when we are sick and can't make $$$?! what a terrible position to be put in and it keeps happening because the way the system is set up.

Grapefruit seed extract is something I'm on, the DaVinci brand. My llnd put me on that, seems pretty effective. I think there have been contamination issues with GSE in the past, but it is working for me and I trust my llnd and he recommended this particular brand. So just throwing that out there as a possible option!
Posted 8/1/2015 3:23 PM (GMT 0)
I thought about GSE too! Is it a cyst buster?
Posted 8/1/2015 3:46 PM (GMT 0)
What was your dosage of Amox?

I was put on 3000 mg per day - divided into three doses due to it's short half life of about one hour.
In addition, I as prescribed Prebenecid to take with it. It keeps the blood levels of Amox raised longer.

I have seen literature where it states up to 6000 mg per day is required. (I can't remember for sure, but I think it was in the Lyme disease treatment Guidelines (Burrascano).

Amox is considered a good med to be on even with chronic lyme.
But, after one month, my LLND added biaxin to it. It's okay to start with one...and then add another one after a month.

Also, doxy is still an effective antibiotic to treat chronic lyme. Other than sun issues, I tolerated it fine. Again, after a month or so, you should add something to it.

You could do doxy and zithromax, or dozy and biaxin.

Another option is Ceftin...then Ceftin with biaxin.

Or...Minocycline...one of the best for penetrating the blood brain barrier.

So, for cyst busting, there is Flagyl and Tinidazole. There are some concerns taking those, as some research showed one of them could cause cancer - and then it was assumed that since they're both the same class - that the other one could, too. Sorry, I don't remember which one was in the studies.

So GSE is another option for cyst busting...but there's been a lot of discussion regarding contamination in the processing of the GSE.

So, Tbohl - I'm thinking your symptoms increasing - could be from either not enough Amox and/or not being paired with probenecid...or were you perhaps herxing?

**** BTW - I am not advocating you self-treat with antibiotics...I am just passing on what I have learned about them. :-)
Posted 8/1/2015 4:49 PM (GMT 0)
Thank you for the info Girlie :-) I was only on 2,000 mg a day, maybe thsts why! And only Amoxicillin... ahh thats scary about the cyst busters. I have taken Doxy but only 2 weeks when I first had Lyme, it helped put me in a remission for a few months but then it came back, do you HAVE to be on a cyst buster when taking Doxy?
Posted 8/1/2015 5:48 PM (GMT 0)
Even when on other antibiotics (not just doxy), most people do take a cyst buster at some time during their treatment.

There is a member here, Chapelle, who is healed...and she wasnt on a cyst buster. Well - she tried the GSE for a short time, but it didn't agree with her, so she stopped it.

I also have talked to another person where I live who healed without one. I believe she had symtpoms for7 or 8 months prior to treating. She treated for about 7 months...she finished treatment over a year ago...and is still fine.
Posted 8/1/2015 6:09 PM (GMT 0)
There is a story on the interwebs of a guy back in the 90s who cured lyme with Amoxicillin..high doses but if i remember right it took 7 years :)

The key to cyst busting is allow them to convert back which is shown to happen rapidly in good conditions. That is how lyme was cured decades ago and i still believe its relevant today. The issue i think is finding a drug that goes into the brain..because if bb is sitting in the brain, its going to be hard for some abx to reach it up there unless the doses are sky high. I think that is one reason high doses of Amoxicillin are given...it has more success in the cns at higher amts.

2 grams a day was not enough of amoxi...

I would use tindamax... combine that with minocycline or doxy... i think that would be a killer combo. Maybe pulse it some so you get a break. Doxy sits in the system for a few days so you'd have to take that into acct. Tindamax for everything i have read is better in all aspects that flagyl.

Don't forget you can add herbs...cat's claw, enula, etc etc...many naturals also can help.

I still don't know what to believe on GSe... i think the triclosan or the other stuff they found may have been busting those cysts..unless there is new research that took those things into consideration.
Posted 8/3/2015 9:01 PM (GMT 0)
Tindamax is a cyst buster and has been shown in several studies to have a high kill rate on 2 of the 3 Lyme forms as well as probably effective on the L-form. Combining this with a abx like Zithromax or Omnicef has shown to not only treat Lyme well but also co-infections like Babesia. Tindamax and Zithro are not expensive medications comparatively speaking.
Posted 8/3/2015 10:17 PM (GMT 0)
I think Zithro was a good drug for me! I havent been on tindamax though i will talk to my Dr. This week :-)
Posted 8/3/2015 10:24 PM (GMT 0)

tbohl said...
Well, I know i need to see a LLMD... but I cant find one that would take insurance and dont have the money to see one right now, I am seeing a nurse practiticioner that dx me w/ lyme so I am thankful for that and she knows the lyme basics I like to say, but she doesnt get much into the abx... she put me on Amoxicillin, and every since I took it for 30 days (finished them 2 1/2 wks ago) I have just been going down hill... stiff neck, joint pain, miserable! I dont even have one symptoms free day any more....

Now I've read that Amox sucks for Lyme due to the way it just kills the wall of bb bacteria, and bb can live without a cell wall, soo my np said next we will try doxy, she hasnt wanted to put me on it because of the nausea and side effects. But then I've read doxy makes it go into cyst for so what do you pair doxy with for a cyst buster? I feel like I never hear of doxy paired with a cyst buster

I'm sorry if I'm repeating someone and haven't acknowledged it - I didn't stop to read all the posts!

This is why it's suggested that Ammox be paired with Probenecid to help increase it's half life while in the blood stream.

Why not take this to your doctor: www.ilads.org/lyme/B_guidelines_12_17_08.pdf At least you will have a fighting chance of healing.

I did see that detoxing was asked about though - so do please be sure that you are doing all you can to help your body detox - it can slow healing!!! The body can't operate smoothly and well if it has to deal with a high load of toxins.

And for what it's worth, I didn't take any cyst busters either, but I used herbs.
Posted 8/4/2015 1:56 AM (GMT 0)
Tbohl,

I have been taking Doxy and GSE. You could always start out with GSE and later work up to Tini or Flagyl, which are more heavy duty cyst busters. You can ask your doc when you have a chance. I'm not sure if that is what my doc is planning.

Doxy has its pros and cons. It treats a number of co-infections. On the other hand, it can cause Lyme to turn into cysts more than other antibiotics.

I took my doxy in the middle of a meal when I first started to help with the nausea. I also kept my torso upright for 30-60 minutes afterwards. I also have a script for Zofran, which helps. Good luck!
Posted 8/4/2015 3:06 PM (GMT 0)
Lymie Girl
I am thinking Doxy is going to be next month as my Dr. Pulses my abx. I am glad to hear you can take GSE with it
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