posted
Flare-ups are totally normal. I don't know that they're good or bad, it's just part of treatment. I would look for a trend of them being not as bad over time, but other than that, I wouldn't worry too much about them.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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canefan17
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I usually get them after a night of not-so-good sleep.
Or if I go to sleep later than usual.
I just don't want to get discouraged every time I get some flareup of symptoms.
I went 2 weeks with no symptoms and was THRILLED thinking I was kickin *** haha.
Then bam... wake up one day with blurred vision, sorta dizzy, headache, and soem brain fog.
D'oh!
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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sutherngrl
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I have been treating for a year and a half. I just now started having flare ups. Before I felt like pure crap 24/7, it never let up. So for me, having flare ups is a good thing, because now I have a few good days in between my flares.
I feel worse now if I over do it for a day or if I don't get my 5 hours of sleep that I just finally started being able to get. Once I get a flare, I have to spend a day or two or three resting, literally laid up to get over it and hope for another good day or two to come along.
Goodness, this sounds like I'm venting. Anyway, this is how it is for me concerning flare ups. To finally be able to say I get a flare up is a good thing.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TF
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posted
I think a 28-day lyme flare is normal as they say lyme has a 28 day cycle. If you have other coinfections, they can cycle also. So, I don't know that anyone can really answer your question.
I was on antibiotics and my lyme disease continued to progress. For example, I got new horrible symptoms like trigeminal neuralgia. I also had improvement in symptoms.
I was at a lyme disease conference and was able to ask Dr. Joseph Burrascano what would account for this. He answered from the podium that if the antibiotic treatment is inadequate, the disease can continue to progress.
I just tell this because some people are on inadequate treatment. They need to know that. It may be that their medications are too low a dose or not the correct meds, not the correct combinations, etc.
I got well by seeing a doc who followed the Burrascano protocol. Once I got Burrascano type treatment, I was finished with treatment in a year.
I had lyme, babesiosis, and bartonella undiagnosed for 10 years.
I wasted 2 years on inadequate treatment, continuously taking antibiotics. They helped me, but they were never going to get rid of my disease.
So, just want to let you know that not any ole treatment is adequate. Don't keep thinking you are "armed with meds" so everything is going to turn out right. I made that mistake.
With this disease, it pays to be educated about what good treatment looks like. I could have gotten well 2 years sooner if I had known this.
So, I suggest you read the Burrascano lyme treatment guidelines and compare your treatment to the guidelines. Notice medication combinations that are recommended, dosages, and length of time each disease should be treated.
Then, you can decide if you are on adequate treatment, because you will have something to compare it to. Burrascano is the lyme disease guru in the U.S. and the world. He travels around teaching other docs how to get rid of this disease.
His Guidelines are not an easy read because they were written for doctors, but it will pay you to study them. They are here:
Just trying to help others avoid the pitfalls I experienced.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sutherngrl
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There are some LLMDs that have researched LD for 30 years that do not go exactly along with these dosages because they have done their own research and are just as brilliant as Dr B; and they use their own research as their guidelines.
Everyone is different and can't neccessarily take large doses of meds. If you can that is great. Maybe you will get well sooner, maybe not.
I know ppl that have gotten well both ways. I know ppl that treated aggressively from day one and still aren't well after several years.
I am not saying I am against Dr B's guidelines at all, just saying ppl can and do get well using other protocols as well. And not everyone can handle these dosages.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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canefan17
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TF, appreciate the response.
The reason I said I'm armed is because I AM, in fact, on Dr B's protocol.
My Dr in Denton, TX learned from Dr. B and follows his guideline to a "T".
Plus I've read over the guidelines a billion times and do exactly what it says... right down to the workout program given.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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TF
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canefan, good for you! I expect you will do well.
I wish everyone would follow your example.
That exercise program is a REQUIREMENT. My doc said I would never get well unless I did it. (It boosts your immune system, they believe, which is the key to getting well and not relapsing.)
I did it, exactly as Burrascano says. And, I am happy to report that it has been 4 1/2 years since I completed my lyme treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
I and my friends and acquaintances have all gotten well on the Burrascano protocol. Since I don't know anyone who has gotten well using another protocol, I just advocate for the one I know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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canefan17
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TF,
Do you care if I ask you some questions during my treatment?
For example... I styart flagyl soon (cyst buster) and i'm just curious what your experience with it was?
Did you take anything to lessen the Herx. I've heard lithium, charcoal, lemon water, saunas.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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TF
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posted
To lessen the herx, my doc put me on a special diet (called The Body Ecology Diet, but that was years ago--he may have published his own special diet by now). I got the book from the library.
He also had me take probiotics, eat lots of fresh lemons daily and drink lots of water. I cut up and squeezed the lemons into the water. He said to eat 4 lemons per day. I never achieved that.
He said lemons are God's natural cleanser of the body. That's why I was to eat them before the flagyl and during the entire lyme treatment.
He also put me on diflucan for 1 week before starting my flagyl/zith combo. He had me stop ALL meds for that week. This was to coax the lyme out of the cyst form, then ambush it.
But, remember, I had been treating with an inadequate protocol when I went to him. And, I had had some episodes of yeast previously. So, your case may be different from mine.
It seems to me he wanted me free of yeast and cleansing my body well before we hit the lyme with the flagyl combo. As it turned out, the herx was not bad at all. About 3 days of feeling bad (not horrible), and then 3-4 days of feeling half bad.
I was scared to death of that first herx, but it turned out to be a big nothing! And, I had turned ALL my lyme into the cyst form, according to my doc, with the treatment I was on for the previous 2 years!
Posts: 9931 | From Maryland | Registered: Dec 2007
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canefan17
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Wow that's interesting.
Ya I'm taking a yeast protection med right now
And I'm taking Doxy, roceph, and plaquenil.
This all seems to be the precursor to Flagyl.
The probiotic ive been taking has literally been saving my life.
I haven't had 1 case of diarrhea or the runs, etc. (knock on wood : ) )
Thanks again TF
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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canefan17
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The lemons idea is interesting. My doctor told me to do the same thing when I feel a bad herx coming on.
so you literally just buy lemons, cut them up and squeeze them into a cup of water??
A pitcher of water?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Haley
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posted
Hi TF,
How long did your treatment last (not including the 2 years of incorrect treatment)?
Can you PM me your protocol (a vague outline)?
I feel that is what I have done. I was on Rocephin and probably all of the Lyme turned to cyst form. I took 2 weeks of Flagyl and my body went haywire. How long were you on Flagyl?
TF
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Member # 14183
posted
My Burrascano type treatment took 1 year.
I took flagyl for 2 months, 250 mg 3 times per day. I took amoxicillin with it for the first month (since the zith originally prescribed gave me hives.)
My doc had me stop magnesium supplementation while taking flagyl.
Posts: 9931 | From Maryland | Registered: Dec 2007
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canefan17
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What was the reasoning behind stopping the mg during flagyl?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
I'm curious about stopping the mg with flagyl too, since my dr did not have me do this.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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TF
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Member # 14183
posted
Sorry, my doc had me stop magnesium due to taking Levaquin.
The second month on flagyl, the doc added Levaquin and told me to stop magnesium. It was because he did not want me taking magnesium with Levaquin.
Posts: 9931 | From Maryland | Registered: Dec 2007
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