posted
The next ? is do you treat it . I think ive heard you might activate it (**** it off). Id hate to get worse treating it, but sure like to get better . what has been your experinces on when to treat . newbe , Doc
Posts: 95 | From nys | Registered: Jan 2008
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posted
The next ? is do you treat it . I think ive heard you might activate it (**** it off). Id hate to get worse treating it, but sure like to get better . what has been your experinces on when to treat . newbe , Doc
Posts: 95 | From nys | Registered: Jan 2008
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posted
I'd go see an LLMD. Why wait till you get sick? We treated my daughter who had minimal symptoms, her treatment went fast and was easy compared to mine.
Then do what you can to maintain your health to keep it from coming back.
I have had it for 35 years. It was "liveable" for me. I had a few times symptoms flared badly, but mostly it was as you describe. Then five years ago it all of a sudden got worse and I ended up quite ill and disabled from it.
Treatment has been difficult.
The good news is that I have gotten better faster than average .... I'm sure you'll find that, too, since it hasn't knocked you down to badly yet.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my daughter-in-law tested more positivve than all of us and she said she didn't have symptoms
she got tx anyway...and her learning disabilities and pms went away. she had lived with the symptoms so long she just thought that was the way she was.
she went back to college and got A's. when she stopped tx she couldn't do her work.
after 3 yrs of high dose oral abx and a yr of detox i was a lot better and maintained for a long while by taking certain supplements and doing life style changes
i think it helps to keep the load of ketes down
may give me more time before i relapse
i found continuing tx when your symptoms don't seem to improve doesn't help. changing the tx or pulsing may help.
but when your body needs a break from abx there are many supps and alt tx that can help keep the ketes down
other wise they just get deeper into you and reproduce...ready and waiting for when you get stressed or have a trauma...or even another tick bite
remember: i'm not a doc. just a lymie. i'm pretty sure what i said is true. it is how i think about the disease and why i make the decisions i do to keep it controlled
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Doc,
Abx! ASAP. You've seen first hand how deleterious Lyme can be.
I had it for years, I can see in retrospect, and kept it at bay. Then after another exposure, my symptoms became clearly worse, and then a few years later (likely another exposure), I became 1/2 disabled, and then a few years later, fully disabled.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I totally empathize why "you're on the fence" and many of my friends/family members have had the same experience and chosen NOT to treat.
ME: There's no way in hell I'm letting something fester and grow in my body, knowing that it could lead to MS or ALS or a stroke or worsening of symptoms.
I say KILL the thing. The lower the strain/symptoms, the better luck you'll have at nipping it in the bud, and hopefully LESS of a scary treatment.
It's totally subjective but in my brain, there was NO choice and in hindsight, I'm glad I went for it...better quality of life.
posted
Has anyone here gotten worse from treating a milder case, (other than herxing) . thanks all Doc
Posts: 95 | From nys | Registered: Jan 2008
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posted
This is a reasonable question, in view of the hassle and expense of getting treated. Not sure what the right answer is for you.
In my case, I had what might be described as mild symptoms for the two years after the bite, but then the roof fell in. Major multisystem crash. Not sure why it happened then as there didn't seem to be any particular trigger, no trauma, other illness, or anything.
In some people the immune system may hold it down indefinitely. In other people, it may take a while to get really sick. In still others, they get very sick immediately after the tick bite. So, no telling what will happen in any particular case. Or what kinds of side effects might happen during treatment. It is also common to have quite different responses to an antibiotic. So, not clear what will happen with treatment, ends up being trial and error. Sure wish the testing and symptoms were better delineated and accurate, so all this trial and error was NOT necessary.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Doc, I wonder that too. If I'd started treatment back when I had a mild case (90% well), I wonder if I would've had less herxing and gotten entirely well. (Of course, no one knew anything about this 30 years ago.)
At first, it was classic CFS, sleeping a lot and always weak and tired. I slowly reached the 90% remission and it held for years.
Then, I had a physical trauma, and had a relapse. I ended up worse (with FM) since that time. So, in hind sight, I wish I could've known to go after it before that life threatening illness made my symptoms worse.(Still nothing known about it at that time, so another moot point.)
I don't know what silent damage may have been done that's gone unseen until now. I finally have good medical help, but I wonder if it's too late for total remission.
So, I suggest looking into ways to keep it from getting worse. Those who reach remission take herbs, or supplements to keep it in check.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
You might look into something like the Cowden protocol that is gentler than abx and works on detox and adrenal support. I am weaning from abx onto full Cowden. It has been going very well for me except that right now Cowden does not treat babesia, so I've had to go back on babs meds.
posted
Just to clarify my condition. looking back i think i first got this 20+ yrs ago when living in conn.
I got some fatiuge and flu symptoms witch mostly passed, but came and went over the next 15 yrs. some other wierd things over the yrs docs could never figure out .
Sometimes dizzy ,high white blood count & others. (still funcnable) . Then 6 yrs ago both the wife and i got flue symptoms that never went all the way away. (hers worse . doc said fibro after 5 months)
I am still mostly getting by but have many poor days with some brain fog, neck & knee pain , tired most of the time ,weak feeling in general.
She goes back to her llmd mid march I will talk with him about this then & see what he thinks.
just hate to treat and get worse as i still get by pretty fairly (kind of )lol .
I did a modified salt/c for 2 months (worked up to about 8 grms ) . It did help some with br fog & a bit with pain. but stopped after reading some of the post here, although i seemed to tolerate it well.
I asked llmd (dr h hudson valley)on her first visit about s/c. he said many are helped by it but its needs more rescech.
Probable will have w/b test done at that time just not sure i can afford to treat both of us $$. (sorry about spelling) Doc
[ 25. February 2008, 10:21 AM: Message edited by: doc ]
Posts: 95 | From nys | Registered: Jan 2008
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posted
doc, I see the same LLMD. I agree that it's good to ask him. You can also buy the Cowden protocol from him at a discount if you decide to go that route.
Knowing more of your story, there is no doubt in my mind I would treat. No doubt.
You WILL get worse if you don't ... you MAY get worse temporarily from herxing if you do ..... your wife's LLMD can make you well.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
She actualy sees his np under him, ( np f )as he isnt taking new paticints. But get to see him a few minutes on visits, Doc
Posts: 95 | From nys | Registered: Jan 2008
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posted
That's their standard protocol .... as far as I know, everyone really sees an NP, and the doctor on occasion. The NP's are also very good.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
And of course there is the wonderful distinct possibility that you can reinfect your wife and vice versa, and neither of you get completely well / into remission.
I sincerely hope you've heard our collective cautionary wisdom. I wish I'd known anything about the symptoms of Lyme Disease in 2000, when I'd picked 100's of ticks off the dog, and one burst in my hands.
I asked the vet if there was any Lyme disease in Nova Scotia, "No". Well, Yes.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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adamm
Unregistered
posted
Yes, it can be quite mild. Infections with certain strains can even
be self-limiting (these ones are so few and far between,
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Sixgoofykids, Can't you take the Quina on the Cowden? It is specifically for Babs. (Quina = quinine) Or has he removed it from the protocol for some reason? Samento does kill a couple of strains of Babs too, so you might get lucky.
- - -- - - - - -- - -
doc, Here is another reason to treat ASAP. I was misdiagnosed twice, for a total of 21 yrs. before getting the Lyme dx. During that time, Lyme dysregulated my immune system.
Now my immunity is so TH2 dominant that I am allergic to all of the ABX that kill Lyme. Fluroquinolones are the only class of ABX I am not allergic to, and not only do they not kill Lyme, they can make it worse. I am screwed.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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