posted
I had my first LLND appointment Monday. I asked flat out if Lyme is curable. His response was, "you can never eradicate all the bacteria".
Is this true??
It was disappointing to hear that to say the least.
Posts: 29 | From 42.782745, -71.280301 | Registered: Apr 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Depends on the doc.
Since there is no definitive test, the docs use symptoms to determine "remission" or "cured".
Most experienced LLs won't use the word cure.
I found that discouraging also at first, but heck, remission is an OK word as well Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I would say it's true. Focus on getting your life back by knocking down most of the bacteria. I believe it will always be lurking in our bodies, just like EBV does.
Many viruses and bacteria never leave us, they just go to the background.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Its true
If an llmd said they could cure me i wouldnt go to them. They wouldnt know what they were doing
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Chicken pox is also not "curable." It stays in your body forever and can come back a second time as shingles.
So, be sure you worry about chicken pox/shingles also while you are at it.
I got rid of lyme, babesiosis and bartonella 9 years ago. That's when I completed my treatment. I have been symptom free for all 9 years. So, I say I am cured.
Dr. Burrascano says that if you don't relapse in 3 years of stopping treatment, then you won't relapse. So, to me, that is cured.
The lyme doctor is right that lyme docs hesitate to say a person is cured. But, in all respects, I and others I know ARE cured.
But, I believe that there are probably some lyme bacteria that don't get killed with treatment. So, it becomes a word game. Some people relapse. If you don't relapse after 3 years, then call yourself cured.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I guess my confusion is, if the infection cannot be eradicated, then it can come back at any given time.
If I'm symptom free for 3 years, I can still get sick latter on in life. Can I still pass it to another even if I'm symptom free?
Please correct me if I'm wrong, but can't Lyme lie dormant for years? Don't get me wrong I look forward to becoming symptom free. But I want more! I want to feel safe!
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
TF does your doc say you wont get lyme if you are bit again
With so many nyphs the size of pencil points, bb carried by all kinds of other biting bugs, so few getting a rash when bit , ticks in cities on concrete, and "falling" off birds i think we all need to be on guard forever
I dont want to be an alarmist but i am a realist and my life has "really" been changed by this disease
Nh hiker-there isnt conclusive info that lyme can be passed to another...except by blood trasfusion
There is some talk about it being transferred secually but not confirmed
The llmds i have talked to about this say there is more chance people are in the same envirinment so get bit but dont know they got bit
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
And yes Bb does go dormant...similar to syphillis...and chicken pox/shingles
But lyme comes out of dormancy when environment changes
It seems like it comes out more often than once like sypf and chic pox
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You are never immune from lyme disease. Having it once provides no protection against future bites.
So, people who have had lyme disease must be vigilant their entire life not to get it again from a new bite.
About 2-3 years after completing my treatment, I got bitten again (never saw the tick, but I had laid a few weeds on my arm for a minute, and I got a bulls eye rash right there on that arm a few days later).
So, I got back to my lyme doctor within a week of the bite and he gave me 30 days of meds (treated lyme, babs, and bart--all 3). Then, I was done. I had a very mild herx also!
So, that was my experience getting lyme a second time.
I attract ticks, so I cannot live a normal life like other people. If I try to do that, I will just get lyme over and over again.
So, I will not walk in a woods unless my life depends on it, I will not walk in the grass along side the road, I had to stop going berry picking along side the road, got rid of our bird feeders in the yard, stopped gardening, etc.
I had to make lifestyle changes to avoid getting bitten again. My lyme doc recommended we sell our house and move where there are fewer ticks because we have so many ticks on our property. (We back to a woods. We get deer in the yard every night.)
My husband spreads granules to kill them and also sprays to kill them. I check myself each time I am out, even if just sitting on the driveway or on the deck. I have to always be vigilant.
Still, on Sunday morning I felt something crawling on my wrist while in bed and, sure enough, it was a tick. I had my husband put it in a container and we will keep it for a while.
I believe that when my husband cut the grass on Saturday he brought the tick into the house and, once I came to bed, the tick came over to me, since I attract them.
It was not biting me and it was not engorged, so I felt fortunate. But, as I say, you will never be the same after having had lyme because you must be so vigilant to avoid ticks for the rest of your life.
2 weeks after completing my treatment 9 years ago, I found an attached tick in my belly just as I was going to bed. It was horrible! I freaked out. My husband pulled it off and the mouthparts remained in my belly.
I sent the tick to Igenex. It tested negative. I never got sick from it, but I had to find a doctor to cut out the mouthparts.
So, I have continued to have run-ins with ticks since getting lyme. I am very careful, but still I find them. I can get a tick on me from sitting on my elevated deck for 10 minutes. That happened 2 years ago.
I can get ticks on me by standing on my paved driveway for 10 minutes. They come after me because I must make the pheromones that they like.
And, I agree that it is probably impossible to see the very tiny ones. So, it is best to avoid their habitats.
It would be great if we could ask Burrascano WHY a person will not relapse if they can go 3 years without relapsing. I don't know the answer. Is it because your immune system has finally killed all the germs?
We know that any time a person's immune system gets weak, the remaining germs could begin to multiply again, so how can it be that you won't relapse after 3 years of not relapsing, unless you have finally killed all the germs.
I have gotten steroid shots, taken steroids orally, been under extreme stress for over a year, etc. and still my lyme disease never came back. So, that seems to indicate that I may have gotten rid of all of the germs from my body.
I know the antibiotics don't get rid of all of the germs.
So, I suggest you do what I did. I did the Burrascano exercise program (1 continous hour of weightlifting every other day). This strengthens the immune system. My lyme doctor told me I would never get well unless I did it.
So, I beleive the exercise is the key to getting rid of this horrendous disease, plus the meds, the supplements, and the anti-yeast diet. I believe that Burrascano's 4-pronged approach does the trick.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by NH_Hiker: "you can never eradicate all the bacteria".
Is this true??
Yes, it's true. You manage it and/or push it back to remission if you can. I felt great when I hit remission (bit again). I've had several docs tell me it can go dormant for 10 years or more.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I agree with what others have said. I seek towards remission and try to hold as long as I can.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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