Really, really long term treatment -- has anyone done it with success?

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JustPiccd
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Date Joined Dec 2017
Total Posts : 84
   Posted 12/30/2017 8:42 PM (GMT -6)   
An LLMD told me that I had been undertreated, which I agree is true, and he also said that I reminded him of a severely debilitated, bedbound patient who required nearly a decade of antibiotics before they really improved.

I get it I'm in for the long haul now, and I'm committed, and about three years into my latest leg of treatment after being off of meds and horribly relapsing. I have multiple coinfections and am a complex case, and am very sick and debilitated.

I read another article today about a Lyme patient who had been told they would need probably seven or eight years of antibiotics.

I get it can sound outrageously long, but I'm actually looking for hope here, as I don't know of many who stayed on antibiotics *that* many years in a row. I'm not talking about herbal treatments as more than adjuncts, but steady course of antibiotics. I do use herbs as well, but for me, they do not cut it as a first-line treatment and I always relapse on herbs alone.

I'm just curious if anyone started out really far down, and misdiagnosed or untreated for too long, and came back after many many years of treatment on that level, and even after treatment seemed to not be making dramatic gains.

astroman
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Date Joined Mar 2014
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   Posted 12/30/2017 8:58 PM (GMT -6)   
Thats a long time. Many have seen the depths of he// and got better in less time. Maybe not completely, but enough to function, work, do things, ect.

If your doing the same thing with no improvements, change it up...treatment, target, or both. That can be said for almost anything.

There is something to be said about helping the bodies immune system too, abx wont directly do that. "Killer herbs" wont either.
Had initial lyme symptoms late 80's, then again w/with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / repairing / fine tuning since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

Rikky1
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Date Joined Jun 2015
Total Posts : 2922
   Posted 12/30/2017 9:13 PM (GMT -6)   
your question is very specific but i can answer that i've been on antibiotics for a bit over 2 1/2 years after starting treatment 6 months after first symptoms appeared.

i can say i've made progress and stripped away some of the less annoying symptoms but my main one (nerve misfirings due to bugs messing with my brain) haven't budged all that much in 2 years.

i always say with these infections it takes persistence and consistency and that could take years. i see Dr. J in DC and he says most of his 'less complicated' newer infected folks take anywhere between 9-15 months to get into remission. heck that's a long time for someone that's only been living with these bugs in them for months or a year or two.

i know of several folks that have gotten their lives (mostly) back after taking meds for a few years. i heard of another prominent LLMD say it takes on average 3 years to eradicate these infections in those without other complicated factors.

under treatment is a big problem in this area. for example i treated babesia mostly on and off for over a year and couldn't shake it. it took 10 months of targeted repeated anti-malarial protocol to get it pretty much gone.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/30/2017 9:33 PM (GMT -6)   
JustPiccd said...
An LLMD told me that I had been undertreated, which I agree is true, and he also said that I reminded him of a severely debilitated, bedbound patient who required nearly a decade of antibiotics before they really improved.

I get it I'm in for the long haul now, and I'm committed, and about three years into my latest leg of treatment after being off of meds and horribly relapsing. I have multiple coinfections and am a complex case, and am very sick and debilitated.

I read another article today about a Lyme patient who had been told they would need probably seven or eight years of antibiotics.

I get it can sound outrageously long, but I'm actually looking for hope here, as I don't know of many who stayed on antibiotics *that* many years in a row. I'm not talking about herbal treatments as more than adjuncts, but steady course of antibiotics. I do use herbs as well, but for me, they do not cut it as a first-line treatment and I always relapse on herbs alone.

If you are really debilitated, I would go to one of the best LLMD's there is (if it were me)

I'm just curious if anyone started out really far down, and misdiagnosed or untreated for too long, and came back after many many years of treatment on that level, and even after treatment seemed to not be making dramatic gains.


Well, I'm not sure how a LLMD would be able to tell a patient that they would need 7 or 8 years of antibiotics.
Some really bad cases I've known...or read about were healed in 3-4 years. I don't think anyone can predict - too many variables. How long was the person ill before treating, how many coinfections do they have, how well they detox, how is their gut health...adrenals...etc.
I don't know if even a LLMD can predict duration of treatment required.
If you are really debilitated...then seek out one of the best, more experienced LLMD's for treatment. That's what I'd do. Well, actually, that's what I'm doing now after three years of treatment and plateauing.

Watch Under Our Skin and the sequel Emergence. The Ranger in that documentary - he got well (he was on IV abx for awhile) - and I can't remember if it was 5 or 8 years it took him.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2473
   Posted 12/30/2017 9:42 PM (GMT -6)   
Girlie, true - a doctor can't predict. But they can make educated guesses based on their experiences. I frequently ask my doctor, but I always remember to keep it in context. Unfortunately, we are a complex case and don't have hardly anybody else to compare to... so we are making our own path. And in doing so, our doctor in turn learns from us.

So, I think it's a legit question to ask, but keeping in mind it's truly just a guess and can be very variable. Unfortunately for us, Kid#1 took much much much longer to heal than originally estimated (which was just a few years - which seems so long initially).
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
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Date Joined Apr 2016
Total Posts : 2473
   Posted 12/30/2017 9:50 PM (GMT -6)   
Well, I can't answer your question specifically in the exact scenario you are describing.

However, Kid#1 was VERY very very difficult to treat. No doubt a complex case. I believe my kids got this in utero. If that's the case, then he would have had it for several years before we saw serious issues and started treating.

He is doing great now. He is very well. However, it took SEVERAL YEARS of treatment. We did do abx for many years, but unfortunately for him, they did not heal him at all. I consider it an abx failure. We moved on to other treatments. We had many more failures than successes, to be honest. And again, treatment for several years, SEVERAL YEARS!!, .... which I consider a very long time.

Now, just because abx wasn't the best for him doesn't mean that it can't be more successful for others (clearly others heal from abx treatment). Obviously, this is a very complex situation.

At times, I really doubt whether we could get to this point. He was extremely sick, and to be honest, he was very severely debilitated for years. I call those the dark years, and I rarely go into specifics on that time.

So, I share this with you because I hope it gives others hope. I hope it doesn't discourage people, as his treatment was a really long time. BUT I hope people understand that he was a very complex case. A lot of people who get well get better in shorter timeframes than our family does.

Truly wishing you the best in healing. My best advice is to never give up and try new/different things if something doesn't work.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 12/30/2017 9:54 PM (GMT -6)   
Hi all, thanks for this info, really helpful. I just wanted to quickly clarify that my LLMD didn't actually recommend 9 years for me (and I could have been badly paraphrasing that article) -- he simply said I *reminded* him of a patient who required 9 years, really b/c of level of debilitation over a long time and also delays in treatment/undertreatment. I hope that makes more sense.

Rikky, I read Dr. J's blog all the time, he's great.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/30/2017 10:24 PM (GMT -6)   
JustPiccd said...
Hi all, thanks for this info, really helpful. I just wanted to quickly clarify that my LLMD didn't actually recommend 9 years for me (and I could have been badly paraphrasing that article) -- he simply said I *reminded* him of a patient who required 9 years, really b/c of level of debilitation over a long time and also delays in treatment/undertreatment. I hope that makes more sense.

Rikky, I read Dr. J's blog all the time, he's great.


Are you talking about Dr J in DC? Where are the blogs to read?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5083
   Posted 12/30/2017 10:50 PM (GMT -6)   
Still, 9 years?

I hope this Dr did something besides script out ABX for 9 years. Thats incredibly hard on the body.

There is something to be said about helping the bodies immune system too, ABX wont directly do that. "Killer herbs" wont either. We can gain more improvements from this than the best ABX in the world. These Drs and their teachers place way to much emphasis on initial ammo while ignoring low immune strength / over all body health.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/30/2017 11:10 PM (GMT -6)   
davidjernigan.blogspot.com/

on the right click on lyme disease

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/30/2017 11:28 PM (GMT -6)   
PeteZa said...
davidjernigan.blogspot.com/

on the right click on lyme disease


Ok - not the same Dr J that Rikky was talking about.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 12/31/2017 8:25 AM (GMT -6)   
There is another blog for the Dr. J. Rikky was talking about: http://lymemd.blogspot.com

Assuming it's okay to post a blog since someone else just did?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/31/2017 12:44 PM (GMT -6)   
JustPiccd said...
There is another blog for the Dr. J. Rikky was talking about: http://lymemd.blogspot.com

Assuming it's okay to post a blog since someone else just did?


Dr. J that Rikky speaks of is in Washington DC (the lyme literate ID Dr.)

Not the one you posted the link to.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Rikky1
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Date Joined Jun 2015
Total Posts : 2922
   Posted 12/31/2017 12:53 PM (GMT -6)   
i remember my first LLMD very prominent doing this a while in NYC i asked him the same question how long till i'm better? he said i had another patient with almost exact same situation as you same infections (at least shown via lab testing), same type of job, age, health etc. took him 6 months then he relapsed a few months later then another 3 months and he was fine so all within a year.

me? i'm past 2 1/2 years.

predictions with this stuff meaning next to nothing unfortunately as we're all so different in how these pathogens affect us.

magoo2
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Date Joined Mar 2015
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   Posted 12/31/2017 1:15 PM (GMT -6)   
https://www.youtube.com/watch?v=C9uaztkS954


I watched this last night and it really seems to makes sense to me

astroman
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Date Joined Mar 2014
Total Posts : 5083
   Posted 12/31/2017 1:30 PM (GMT -6)   
Rikky1 said...
.....predictions with this stuff meaning next to nothing unfortunately as we're all so different in how these pathogens affect us.


Yep.

And - These infections will effect the weakest/most vulnerable points of our body, which differs in all of us and come down to body chemistry and genes.

astroman
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Date Joined Mar 2014
Total Posts : 5083
   Posted 12/31/2017 1:50 PM (GMT -6)   
magoo2 said...
https://www.youtube.com/watch?v=C9uaztkS954


I watched this last night and it really seems to makes sense to me


Again, from the video - [....."Chronic infections" become chronic because of the inability of the immune system to control the organism. "The repair systems are broken"......]

For medicine to figure this out, IS the next step, and what many need. Weak immune cells and autoimmune havoc (with "testable" antibodies) is no coincidence.

Eradication processes dont necessarily repair a broken immune system. This can explain the remission phase which is not the same as cured. Remission is still a good thing though.

Post Edited (astroman) : 12/31/2017 11:54:11 AM (GMT-7)


Traveler
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Date Joined May 2007
Total Posts : 36310
   Posted 12/31/2017 2:00 PM (GMT -6)   
When I was diagnosed in 2007 by a LLMD, he told me I was looking at a minimum of 10 years of treatments. I didn't do well with abx though, so I had to stop seeing him and turned to herbs.

Once I was in the care of a holistic practitioner, my treatment took 2 years and I healed well - but we addressed every single deficiency and weak area, I detoxed as if it was my full time job daily, and was really careful to avoid stress.

2 years after healing, stress was unavoidable and I succumbed to Addison's and hypothyroidism and then got reinfected by a tick. Now, I've been back in the fight for the last 3 or 4 years now, and am really quite stable, although I still have more healing for my adrenals and thyroid - and boosting my immune system carefully to help me heal the infections I still have remaining.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

magoo2
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Date Joined Mar 2015
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   Posted 12/31/2017 2:06 PM (GMT -6)   
astroman-that doc does correct repair systems. No reasons others cant

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 12/31/2017 2:14 PM (GMT -6)   
I was able to do some ozone injection treatments as suggested in that vid when I could access them but they're not available here now. I've been thinking of trying rectal ozone but haven't yet researched on this site to see if it helped people. . . .

For me, I felt a boost from the injections, it just wasn't enough to really do a fair trial but I can imagine it could be a really good adjunct.

magoo2
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Date Joined Mar 2015
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   Posted 12/31/2017 2:35 PM (GMT -6)   
I have found ozone helpful but I think the point of this doc is you need to repair all systems in your body

astroman
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Date Joined Mar 2014
Total Posts : 5083
   Posted 12/31/2017 3:33 PM (GMT -6)   
magoo2 said...
astroman-that doc does correct repair systems. No reasons others cant


I never heard oh him before.

Are you saying he repairs the immune system? Is this mentioned in a video or website? Link?

I did not watch the whole long video, I see he has other vids too.

thanks

magoo2
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Date Joined Mar 2015
Total Posts : 1301
   Posted 12/31/2017 4:04 PM (GMT -6)   
I think you will find it an interesting vid-when you get a chance you may want to watch

astroman
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Date Joined Mar 2014
Total Posts : 5083
   Posted 12/31/2017 4:12 PM (GMT -6)   
magoo2 said...
I think you will find it an interesting vid-when you get a chance you may want to watch


??

Looks like something is missing

greatguy
Regular Member


Date Joined Dec 2017
Total Posts : 104
   Posted 12/31/2017 5:25 PM (GMT -6)   
Rikky1 said...
your question is very specific but i can answer that i've been on antibiotics for a bit over 2 1/2 years after starting treatment 6 months after first symptoms appeared.

i can say i've made progress and stripped away some of the less annoying symptoms but my main one (nerve misfirings due to bugs messing with my brain) haven't budged all that much in 2 years.

i always say with these infections it takes persistence and consistency and that could take years. i see Dr. J in DC and he says most of his 'less complicated' newer infected folks take anywhere between 9-15 months to get into remission. heck that's a long time for someone that's only been living with these bugs in them for months or a year or two.

i know of several folks that have gotten their lives (mostly) back after taking meds for a few years. i heard of another prominent LLMD say it takes on average 3 years to eradicate these infections in those without other complicated factors.

under treatment is a big problem in this area. for example i treated babesia mostly on and off for over a year and couldn't shake it. it took 10 months of targeted repeated anti-malarial protocol to get it pretty much gone.


Dr. J is Jemsek? If so, i respect that doctor a lot. But if he really means that 15 months for a newly infected person, then what i and other who have been infected for almost a decade?
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