Topic: BIG question- if you got 'cured' from lyme & cos AND you get reinfected...
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so,
if you had a bad case of lyme & cos. - ie. misdiagnosed for years and bad sx, then you find out - get tx- get better- dr says you no longer have anything (or says you are in remmission), but then a year or 2, 3, 4..... you get rebitten and see the tick or flea or whatever, or get a rash OR only start getting sx again....
then, do you treat it as a NEW case? or will taking abx only make your old diseases "come back" out of remmission? or will new abx make it harder to keep those old diseases under control?
I keep reading about pulsing, or only this abx for that long, etc. so how do you know what to do if you get it again???
there must be a different protocol, no?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
No separate protocol so far as I know. If you have a relapse within a year or so of treatment, Dr. B recommends a pulse of about a month, but for some folks that pulse will turn into a second course of treatment (if their symptoms don't resolve during the pulse).
And no, antibiotics will not make bacteria "come back"; in fact, they can cause them to produce biofilms to protect themselves and hide better. That's why addressing the biofilms with Tindamax or Flagyl the first time around is so important.
Posts: 330 | From TN | Registered: Sep 2011
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posted
Should my LLMD have me on Tindamax or Flagyl right away, or does that come later in the treatment?
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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Judie
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Member # 38323
posted
I got reinfected. I needed to be evaluated for ALL co-infections, I had several I didn't have the first time so treatment was totally different.
I did tindamax later to clean things up. It can cause peripheral neuropathy, so I wouldn't take it very long (like months and months )or if those symptoms show up.
posted
Probably take it later on, SacredHeart; it can cause major herxes (which is a good thing, but not right when you're starting out).
Tindamax is the one that's been shown to disrupt the biofilms the most. And Judie is right about the neuropathy, but pulsing one week on/one off or two weeks on/two off can prevent that :-)
Posts: 330 | From TN | Registered: Sep 2011
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LisaK
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posted
so JUDIE , did you do the same test first time around and second time? if not could first test have missed what you thought you got 2nd time?
anyone have a link to what biofilms are exatly and very simple explaination? ( I have a virus and don't wanna think too much). I forget what they are exactly.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I'm wondering whether our bodies are more able to deal with the infections the second time around. After all, the immune system finally worked out a lot on the first round.
Posts: 705 | From WA state | Registered: Jul 2011
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Judie
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posted
"so JUDIE , did you do the same test first time around and second time? if not could first test have missed what you thought you got 2nd time?"
My symptoms were completely different the second time around and screamed babesia. I was way lower functioning very quickly. I also had Rocky Mountain Spotted Fever and tested positive for a couple of other things too.
I had the bulls-eye rash both times.
"I'm wondering whether our bodies are more able to deal with the infections the second time around."
Not me. I was way worse off the second time around and had to treat 3X as long.
Posts: 2839 | From California | Registered: Jul 2012
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CherylSue
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Member # 13077
posted
Good info on relapses.
Posts: 1954 | From Illinois | Registered: Aug 2007
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LisaK
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Member # 41384
posted
wow, I went undiagnosed so long I probably just kept picking up others on top of others. by the time they figured it out I had lots all together and every sx in the book.
I guess I always think that everyone was like me, but not so. it would have been nice to only deal with one or even a few sx at once. sounds like such a novelty to me, even though I know it is not something to take lightly as even just one sx can change your life forever.
I am really afraid to get stuff again. almost to the point of giving up.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I felt a relapse coming on about 4 months ago, and began treating with doxy hcl 400MG a day and bactrim ds between 2 and 4 pills a day. Next time I see my llmd I want to ask for Flagyl.
He has me on diflucan for now which supposedly is a weak cyst buster, but since that's causing major herxes I'd just rather be on Flagyl for now and worry about the yeast /parasites later.
-------------------- Back At It Posts: 203 | From NJ | Registered: Feb 2015
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It took so long to find a doctor who would treat me, how would i know if I was re-infected or just suffering a relapse?
How do I know I would get the right treatment...maybe I would need IV meds again but my doctor would assume it didn't work the first time, all the while unknowing that it was a NEW infection.
This leads to quite a bit of anxiety in my life. I am also fearful of a partner reinfecting me if the disease can be sexually transmitted. So many unknowns.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Maia- exactly! this is how I think too.
I am almost at the point of saying "why bother"
I dizzy with insanity sometimes thinking about it.
what can be done?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme, babs, and bart for at least 10 years. Then, I found out it was lyme and I went to a few different lyme doctors.
My final doc treated me with the Burrascano protocol and I was cured. That was 10 years ago now.
Then, 2 1/2 to 3 years later, I laid some long weeds on my arm and carried them for about a minute.
The next day or so I got an itchy hive on that arm where the weeds lay. It turned into a round red rash of about 3 inches in diameter. I knew that I had been rebitten.
I got to my lyme doc within a week. He treated me for lyme, babs, and bart for 30 days. I got no other symptoms, so he said I was done with treatment.
I had a very mild herx on day 3 of treatment. I went outside and did a few things and I got extremely exhausted and had to come in the house and lay down.
After 1/2 hour, I felt fine, so I went out again. Again, I was played out in no time and had to lay down again. This went on all day.
When I went back to lyme doc at end of 30 days, he agreed that that was a mild herx.
So, that was the end of my treatment. That was 7 years ago and I have not had any further symptoms.
I have read that once you get rid of lyme, if you get it again from a new bite, you WILL get the bulls eye rash. My lyme doctor agrees that this is most likely correct.
So, I have taken comfort in the fact that I don't need to see the tick, if I ever get bitten again. Instead, my body will give the skin reaction known as erythema migrans (bulls eye or large red rash).
Hope this helps you. The first few years after I completed my lyme treatment, I was very worried. Hey, 2 weeks after I completed treatment I found a tick embedded in my belly when I went to bed one night. I freaked out!!!
I never got a bulls eye from that tick. I sent the tick body to Igenex for testing. I had to get the head cut out of my belly.
So, just adjust your lifestyle so that you are less exposed to ticks and always check your entire body after being out where ticks may be.
There is life and peace after lyme disease!
Posts: 9931 | From Maryland | Registered: Dec 2007
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