posted
Anyone take oral amoxicillin to treat neuro Lyme? What's your experience with it?
Posts: 138 | From Connecticut | Registered: Dec 2012
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posted
Anyone?
Posts: 138 | From Connecticut | Registered: Dec 2012
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Summer3
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posted
I took it for a short time and developed an allergy to it. Several LLMD's feel that high dose amoxicillin is equivalent to IV's. Usually they combine it with probenecid to increase blood levels even more and combine it with a macrolide and a med for the cystic form.
TF
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posted
I got rid of lyme with oral amoxicillin (with probinecid) and flagyl. It worked great for me. No problems.
It's nearly 8 years ago now that I completed my treatment.
I took 1500 mg 3 times per day.
Since it worked, I never had to go on IM or anything else. Praise God!
I had undiagnosed lyme disease for at least 10 years prior to starting this treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I took it for a while with biaxin, did great, but when the probinecid was added,became allergic.
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Summer3
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Me too Joysie! The funny thing was I took probenecid later with Ceftin and had no problem so I think my allergy is definitely to Amoxicillin now and not probenecid.
posted
Thank you so much for responses. Those that did well on it how long did you have to stay on it while better before stopping it?
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TF
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lymelisa, I don't think it works that way. When my lyme doctor stopped treating me for lyme, I wasn't "better" or well. He moved on to bart and babesia treatment.
Some docs treat all 3 at once.
So, with a great doc, if he will tell you his plan, you will know what is going on and understand better.
I started out with a doc who didn't know enough. Then, I switched to another doc who didn't know enough to get me well. This second doc gave me only amoxi and probinecid for 2 LONG years! He didn't believe in coinfections.
So, that was a wasted 2 years. I could never get off the amoxi without going downhill and back to being as sick as a dog in 2 weeks--mental and physical total wreck.
Then, I switched to a Burrascano type doctor. He kept me on the amoxi for one month but added flagyl to the mix. That is how you kill lyme! You have to be on a cyst buster along with the amoxi.
This doc told me that the long treatment with just amoxi had turned all of my lyme into the cyst form.
After a month of amoxi and flagyl, he stopped the amoxi and kept me on flagyl for an additional month. Plus, he moved on to treating bart. He gave me levaquin for the bart. Did that for one month.
Then, he moved on to babesiosis.
He figured that at the end of babs treatment he would have to go back and retreat lyme again. But, that proved unnecessary in my case. I became symptom free after treating babs for a number of months. That's how we knew there was nothing else to treat.
Because winter was approaching, I had to stay on the babs treatment until spring. My doc won't let anyone stop treatment during winter or if winter is coming on. To do so could cause a relapse.
So, you see, the weather has something to do with how long you treat, so do the combos of meds you are on, and then there is the doctor's plan.
Ask your doctor what his plan is for treating you for all of the infections. Then, perhaps he will give you some idea of what is ahead.
My lyme doc told me his plans, but then they would change based on how I responded to the meds. For example, he thought I might have to take IM bicillin, but the amoxi with flagyl helped me so much that no other lyme med was necessary in my case.
Every case is so very, very different. And you really can't tell the lyme symptoms from the babs or bart symptoms, so you have to be treated for all 3 for a while before you can make sense of what is left.
Once you have been treated for all 3 diseases once, if you are well, then stay on meds 2 additional months, per Burrascano. If you are not well after one round of treating all 3, then your doc will have to retreat you for whatever disease(s) seems to still be causing problems.
Hope this helps you understand the process a little better.
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posted
TF. Thank you for that incredibly helpful post. I actually saved it as it was so helpful. I am so so sorry that your initial doctor stretched out that initial treatment for two years.
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Did you test positive for bart and babs or were you treating based on symptoms?
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TF
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Yes, I tested positive for bart and babs through Igenex.
I really didn't have any symptoms of either, so that is why I tell people not to go by symptoms in deciding they don't have any coinfections.
Igenex SAW the babs in my blood (FISH test), and once I started treating babs, boy did I have horrible weekly flares.
The top lyme doctors all automatically treat everyone for "the big 3" as they call them--lyme, babs, and bart. That is because the vast majority of lyme patients have all 3 as a minimum. This is especially true if sick at least a year.
lymelisa, thanks for your kind words. Keep asking questions and keep reading.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF - thank you. I greatly appreciate you helping others. So glad you're well. I've been bedridden for many yrs w neurological symptoms. I am seeing a wonderful LLMD, ILADs trained for 30+ yrs. I'm hopeful I will get my life back eventually
Posts: 138 | From Connecticut | Registered: Dec 2012
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posted
"The top lyme doctors all automatically treat everyone for "the big 3" as they call them--lyme, babs, and bart. That is because the vast majority of lyme patients have all 3 as a minimum. This is especially true if sick at least a year."
I tested negative for babs and my LLMD didn't think I have bart via symptoms. Just curious.
I don't want to jump into all of the rx for bart and babs unless I have good cause. Some of those drugs are heavy.
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TF
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Well, what you can do if you want to is to just treat lyme. See if you get to 100% that way.
When you stop lyme treatment, if you relapse very quickly, that is the indicator of an untreated coinfection.
It only took me 2 weeks to be sick as a dog after 2 years of "lyme only" treatment. That is the proof that I had coinfections.
Lyme is a very slow growing disease. See, for example, pages 16 and 26 of Burrascano Guidelines.
"A subset of patients who have severe, longstanding illness due to Borrelia burgdorferi carry persistent infection despite having previously received antibiotic treatments which have eliminated the disease in less ill individuals. The mechanism for such persistence has been the subject of many peer reviewed articles. They include persistence of B. burgdorferi in protective niches, ... slow growth, shifting into alternate forms, and dormancy and latency." (page 15)
It would take a minimum of a month or 2 for you to relapse if all you had was lyme disease and no coinfections.
Just know that about 1 year ago Burrascano said at a conference that if the patient has been ill for at least a year, they HAVE coinfections, period.
I believe he said that because his Guidelines say that after 1 year, the patient's immune system is compromised. Then, the coinfections cannot be gotten rid of without specific treatment. See page 3:
"Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)."
And:
"Chronic Lyme is an altogether different illness than earlier stages, mainly because of the inhibitory effect on the immune system (Bb has been demonstrated in vitro to both inhibit and kill B- and T-cells, and will decrease the count of the CD-57 subset of the natural killer cells). As a result, not only is the infection with Bb perpetuated and allowed to advance, but the entire issue of co-infections arises. Ticks may contain and transmit to the host a multitude of potential pathogens. The clinical presentation of Lyme therefore reflects which pathogens are present and in what proportion. Apparently, in early infections, before extensive damage to the immune system has occurred, if the germ load of the co-infectors is low, and the Lyme is treated, many of the other ticktransmitted microbes can be contained and eliminated by the immune system. However, in the chronic patient, because of the inhibited defenses, the individual components of the co-infection are now active enough so that they too add to features of the illness and must be treated. In addition, many latent infections which may have pre-dated the tick bite, for example herpes viruses, can reactivate, thus adding to the illness." (pages 3-4)
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posted
TF. Just wondering did you feel any improvements after just amox and flagyl. I realize coinf need to b addressed but were there any improvements after just amox and flagyl. Thx
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TF
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I had some improvements on just the amoxi (second lyme doctor). For example, there was some lessening of the horrendous fatigue (fatigue is not a good enough word for it).
The feeling of being stabbed by thousands of pins and needles actually went away with just doxy that my family doctor gave me. It went away as long as I was on any antibiotics for lyme. It came back when I was off antibiotics.
Then, when the flagyl was added by my third lyme doctor, I had more improvements. For example, after the flagyl, then I could sleep (PRAISE GOD!). After so many years of being unable to sleep, this was wonderful.
It is hard to separate out what went away the first month with the Burrascano type doctor and what went away later. I wrote a post about it once when a poster really wanted to know.
To summarize it, my false menopause started getting turned around after the proper lyme treatment (amoxi and flagyl), but it took a number of months for me to totally return to normal gynecologically. Many of the symptoms take time to reverse after proper treatment. The ovaries "woke up" gradually and the signs of that happening were there over a period of time. Then, finally, I was back to pre-menopausal. Then, I also got my sex drive back and I was physically able to have sex again. This was after at least 5 years of being on hormone replacement for horrible vaginal atrophy. I was told that my ovaries were very, very small during that time. Lyme shriveled them up and the entire system died.
So, as each disease was treated, more things returned to normal for me. I am not sure at what point the horrible anxiety went away. I never kept a diary.
Lyme is funny this way: once a symptom is gone, you generally forget about it. So, you don't even get to celebrate that it is gone. You just focus on all the horrible symptoms you still have left. It was like that for me during treatment.
I like a saying of Dr. H. in NY. He says that if the patient comes to you with 13 nails in his foot (representing 13 illnesses, including viruses, etc.), don't expect the patient to be happy after you take out 3 of the nails!
So, perhaps with this analogy you can get the general message that the patient really isn't going to feel good until all of the major illnesses are treated.
Each time my doc moved on to treating a new illness, I got really sick again. That is the rule. With each medication change, there is a new killing profile (the new meds kill different germs from the old meds), so you will feel lousy. You will always feel lousy when killing is taking place.
Then, as there is relatively little killing taking place, you may feel better for a while. Then, when you report this to him, the doc will change meds or move on to a new disease and the killing and sick feeling will start all over again.
Once I treated babs for about 6 months, I was symptom-free. It was wonderful! That's how I knew I was going to be all right. I still had to stay on meds for 5 more months, but I was out of the dark tunnel and there were no more tunnels to travel through. It was obvious.
Just know this--If your treatment is inadequate, you can actually start acquiring new lyme symptoms. That happened during the 2 years I was with my second lyme doctor (the "amoxi only" doctor).
So, just know that if your doctor does not treat properly, the lyme disease can continue to progress. That is not MY opinion. It is the opinion of Dr. Joseph Burrascano.
I got to submit a question about my case to Dr. Burrascano at a lyme meeting. I asked how a patient on high-dose amoxicillin could develop a new symptom--trigeminal neuralgia.
Dr. Burrascano's answer from the podium was: "If the treatment is inadequate, the diease will continue to progress."
That's when I knew that I had to change lyme doctors and get myself to a Burrascano doctor. I had stopped making progress and I was now getting new, unbearable neurological lyme symptoms.
Funny, but right after that, at my next appointment, my lyme doctor told me that it looked like I was just one of those people who would have to stay on antibiotics their entire life!
Baloney! I left him, went to a doc who followed Burrascano, and in 13 months, I was finished with treatment. In 8 months under this doc, I was symptom free!
That's why I tell everyone to really study the Burrascano Guidelines and compare their doctor's treatment of them to the Guidelines. You want a doc who does EVERYTHING Burrascano says to do.
If your doc follows a different protocol or "does his own thing" (treats based on what he thinks is the best thing to do), then you have to decide if you have faith in the protocol he is using, that it will get you well.
I tell everyone with lyme that with this disease, you can't just go to a doctor and sit back and wait for the magic to happen. If you do, it likely will never happen.
Instead, sick as you are, you have to learn all about good lyme treatment and evaluate your doc's treatment of you to see if it is really good. If it isn't, you have to move on. You have to educate yourself so that you can pick a better doctor next time. You practically have to go to med school to understand all that is involved with this complex, multi-disease illness and what it takes to treat it!
For details of my lyme experience, you can go to this post:
It is very long and answers the many questions that were posited to me. Hope this helps you!
TF
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'Kete-tracker
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Worked VERY well for my "neuro" Lyme. (It was my 3rd protocol.) And as I was not allergic to Probecid, that helped keep the abx serum levels up (kidney desn't filter the amoxy out as quickly) so I didn't need to take as much. Took it in 2 doses ea day. The resultant higher abx 'spike' often does a better job hitting the Lyme, too.
But a very important "adjunct" med to take with this protocol, in my opnion as well as many LLLMDs, is flucanazole (DiFlucan), as it helps weaken the Lyme AND help keep the GI tract in check by knocking down the yeasts & other "bad" bacteria.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
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Member # 17189
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Worked VERY well for my "neuro" Lyme. (It was my 3rd protocol.) And as I was not allergic to Probecid, that helped keep the abx serum levels up (kidney desn't filter the amoxy out as quickly) so I didn't need to take as much. Took it in 2 doses ea day. The resultant higher abx 'spike' often does a better job hitting the Lyme, too.
But a very important "adjunct" med to take with this protocol, in my opnion as well as many LLLMDs, is flucanazole (DiFlucan), as it helps weaken the Lyme AND help keep the GI tract in check by knocking down the yeasts & other "bad" bacteria.
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