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Cberg
Regular Member


Date Joined Jul 2017
Total Posts : 50
   Posted 5/7/2018 9:00 PM (GMT -6)   
Lyme is curable. Don't give up. I live on Cape Cod and the islands where thousands of people have lyme. I know several people who have had lyme disease and been cured. Yes most got the typical rash and treated right away but we have hope people.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 5/7/2018 9:18 PM (GMT -6)   
Thank you, cberg.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/7/2018 9:57 PM (GMT -6)   
Thanks for posting this, Cberg!
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

julala
Regular Member


Date Joined Jan 2017
Total Posts : 27
   Posted 5/7/2018 11:19 PM (GMT -6)   
Thank you. What about late Lyme? Is that curable? Do you know anyone who was cured? With or without abx? Thanks!!
Bitten 2013 & 2014
Diagnosed w/ Lyme 10/2015. W. Blot -- CDC Neg., IGenex positive.
Diagnosed w/ Babesiosis 10/2015 -- Pathgroup titer of 1:256.
Doxy 12/2015, 2 wks.; 3/2016, 3 wks.
IV Rocephin 1/2016, 12 days.
Colloidal Silver + DesBio homeopathy Lyme & Babesia 3/2016-5/2016
Minocycline 5/2016, 9 days.
Amoxicillin 3/2017, 3 wks?
On 37.5 mg Seroquel and 94 mcg Levothyroxine.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/8/2018 12:43 AM (GMT -6)   
Here's a link to a thread with some success stories - many are forum members over the years:



/www.healingwell.com/community/default.aspx?f=30&m=3562412
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

Cberg
Regular Member


Date Joined Jul 2017
Total Posts : 50
   Posted 5/8/2018 2:56 PM (GMT -6)   
That link Is awesome! Thanks so much

logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 103
   Posted 5/8/2018 4:31 PM (GMT -6)   
Of course it's curable. Can it be difficult. Yes, but it's absolutely curable. People get discouraged because the official story from the CDC is that "more antibiotcs dont help" But theres no proof of this.

Then there others within the Lyme movement say the same thing. They jump to the conclusion that it must be a fungal infection, or permanent immune damage, or some thing else, but their conclusion is basically the same as the CDC's "more treatment wont help." People get discouraged and start believing the lies from both angles when they have treatment difficulties and assume maybe the naysayers are right. They get frustrated and think maybe treatment can't help for whatever reason. Don't believe it.

The waters get muddied on both sides, and the testing is unreliable so it gets quite murky and there is a lot of trouble even defining Lyme or who has it.

But the reality is that we know for a fact Lyme is succeptible to certain antimicrobial agents. Sometimes treatment can take a very long time as it does with other bacterial diseases like brucella, and TB, and syphilis. These can require a year or more of antibiotics. For some reason mainstream medicine is unwilling to wrap it's head around the idea that Lyme may also require a lengthy treatment.

I have spoken with too many people personally who have treated successfully after longstanding infections, and too many LLMDs that have treated people successfully, and read too many scientific journals about antibiotic kill kinetics for Lyme to believe even for a second that it's incurable.

Treatment can be extremely complex and quite difficult. It's like peeling back the layers of an onion. You have to address potential tick borne coinfections like babesia which isnt bacterial so it doesnt respond to antibiotics. But if you slowly move forward and progress through your treatment in a logical step by step manner and eliminate the variables as you go with a good experienced LLMD, I have no doubt you can be cured.

Another problem is how cure is defined. Some people say you can only reach a remission, and it can always come back, but there is no proof of this. Microbiologically speaking, we dont know if it remains in your system for ever. We cannot prove whether it does or not. Some people say you are not cured even if there is a small trace of the bacteria left. But I don't agree.

Think about chicken pox or Epstein Barr. 94% of the population tests positive for EBV, but they arent effected by it. The same is likely true for Lyme. We all have chicken pox, but the symptoms only show once. Does that mean we all have "incurable" chicken pox or "incurable" EBV? I dont think anyone would describe those that way. The key is giving your immune system the extra punch it needs to kill enough of the bacteria to where you are no longer experiencing symptoms. That is a cure as far as I'm concerned, and as far as medical science is concerned when it comes to most diseases.

You can read tons of posts from people on healingwell and elsewhere that describe themselves as 95% better, but hesitate to use the word "cure" because the disease is so mysterious. Thats another problem. People are so terrified of remission because it's talked about so much, and theres no way to prove the disease is gone, so I think people develop unrealistic expectations of what a "cure" is. And since mainstream medicine has left us in the dark, and people experience how devastating the disease can be, they are understandably paranoid about it coming back or not being treated fully. There's no official endpoint to therapy. It's based on how you feel.

So I believe most of these people ( and there a lot of them) that say things like "i'm 90% better" or "95% percent better" are most likely cured, but since Lyme is the great imitator and symptoms overlap with so many other diseases, both serious and minor, people dont know for sure. Any minor cough, or tiredness or achiness can be confused for ongoing Lyme symptoms, when it may not actually be.

I think daily symptom journaling can be quite helpful because so many of the symptoms are so subtle, and our memory can be effected by the disease, so people have a hard time tracking their actual progress. " I feel crappy" is far from scientific, and I think for people who have had the disease since they were in their late 30's or late 40's and are now 40 or 50, think they will feel like superman after the disease is treated and don't take into account the natural aging process that would have happened with or without the disease. I think a lot of people get 'health greedy' for a lack of a better term.

It's important to keep expectations in perspective. If you were a previously active person, but Lyme has had you in bed or on the couch for 2,3 or 4 years, its obviously going to take some time for you to regain the energy and vitality you had before the disease, as anyone who goes from living active to being sedentary for a few years will feel like crap, Lyme or no Lyme.

Personally I think if your major noticeable symptoms subside, and you treat for an additional month or two beyond that then you are cured. Thats the official medical standard for other chronic bacterial infections that require lengthy treatment which I mentioned above.

I think it's a matter of perception and language and semantics. People who get Lyme are abandoned by the medical establishment and they lose faith in things they always expected to work for them. They understandably feel unlucky and some become negative and some are then prone to complaining about even minor things. I dont think they realize how negatively this influences others who may be new to the disease and interpret their minor complaints as "it's hopeless this person has treated for x years and still has serious chronic Lyme, so why should I even try." We try to live vicariously and gain our experience through others and when this experience seems so overwhelmingly negative this negative perception builds on itself and spreads. Bad news always travels faster. I dont think the true picture of treatment progress really gets across.

But as far as I'm concerned, personally I know beyond any doubt it's curable. I know of others who have done it and others achieve it all the time, so it's just a matter of finding the best most efficient means of getting there for you and having the dilligence and patience to see it through.

Lyme is absolutely curable. Theres no compelling evidence to the contrary, and if you really look at it rationally, objectively, scientifically and even anecdotally, the phrase "Lyme is incurable" is completely illogical and unprovable.

physedgirl09
Regular Member


Date Joined May 2017
Total Posts : 399
   Posted 5/8/2018 5:06 PM (GMT -6)   
Thank you so much for this wonderful response....we need more positive uplifting posts like this...lately all I'm reading is negative stuff which scares people including myself... So keep on with the positivity!!!

Cberg
Regular Member


Date Joined Jul 2017
Total Posts : 50
   Posted 5/8/2018 5:11 PM (GMT -6)   
Don't believe anything you hear , listen to logmoss. These "lyme advocates" make outlandish claims by cherry picking facts from 1980s studies and makes us all suffer. It literally makes me so upset that people still say all you need is band 41 to have Lyme IT'S NOT TRUE. It's a clinical diagnosis and a positive attitude can help

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/8/2018 6:37 PM (GMT -6)   
"Sometimes treatment can take a very long time as it does with other bacterial diseases like brucella, and TB, and syphilis. These can require a year or more of antibiotics. For some reason mainstream medicine is unwilling to wrap it's head around the idea that Lyme may also require a lengthy treatment."

Exactly, logmoss82

This is true. I remember when I reached the 1 year mark of treatment - and I was at my regular Doc's office for something unrelated to lyme. I mentioned the fact that I was continuing to treat and it may take another year..even 2..etc.
She didn't bat an eye. She went on to say that she has treated TB several times and it has sometimes gone over a year of treatment in some individuals.

I feel fortunate to have her as my Dr.
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

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 5/8/2018 6:53 PM (GMT -6)   
Logmoss,

Wonderful, clear-headed post once again.

Cberg
Regular Member


Date Joined Jul 2017
Total Posts : 50
   Posted 5/8/2018 7:14 PM (GMT -6)   
I'm printing it out

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 5/8/2018 8:05 PM (GMT -6)   
This topic is really getting a work over lately. Seriously, if your above ground , your doing better than coffin dwellers.

The answer to "is lyme curable" is not the same for everyone depending on your definition of "curable". A better question might be "will I feel better". Most likely the answer is yes. To what degree, no one can say.

The definition of "lyme disease" is not bacteria presence, its the symptoms caused from the "BB" bacteria. The bacteria might stick around at lower levels under immune control without symptoms.

The truth is long term lyme can cause other issues, (damage) most reversible, some not - even when lyme is at its lowest numbers. Technically, its no longer called "lyme disease" then. But your not like your pre -lyme self. There are many bacterial diseases that can cause damage.

I know some with no more symptoms and know some with lingering symptoms and some with damage.

The way I see it- Life has no guarantees. Being above ground is good. Four generations of men in my family had permanent damage from going to war. Lyme seems easier, medals are overrated.

Post Edited (astroman) : 5/8/2018 8:09:12 PM (GMT-6)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 5/8/2018 8:14 PM (GMT -6)   
"The definition of "lyme disease" is not bacteria presence, its the symptoms caused from the "BB" bacteria. "

Excellent point, Astroman. Don't think I've ever seen it stated quite that way. Just like the comparison to chickenpox. The virus remains in the body in a dormant state. Just because it's there doesn't mean you have shingles. You may or may not get shingles depending on the state of your immune system. If you do get it, you know because you have symptoms.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 5/9/2018 9:22 AM (GMT -6)   
My perspective is very similar to what Astroman posted.

It's not is it "curable" by the colloquial definition but is it "curable" by the real scientific definition.

The colloquial definition is basically "magic". That every single microscopic cell of BB will be eradicated from your system. That's not how the immune system and biology works. This definition of "cure" doesn't exist for ANY microbial pathogen that is on or inside a human (or any creature).

The real definition is living with the BB bacteria in your body but being free of symptoms from it.

I'm to the point where 80% of my life is symptom free. The other 20% is a flare of a symptom or two, that is random and seems to rotate. So it's about living with lyme and managing it.

Can one reach a level where they can fully get back to their life but understand 20% or less of their life will require them to take some lyme maintenance action to keep lyme at bay. Yes.

Like Astroman's point "perspective". This is much better than being dead or feeling so bad your quality of life is greatly hampered.

This what all lymies should strive for "realistically". Feeling good and well 80%+ of the time.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 9:42 AM (GMT -6)   
Dacarte - I’m not sure I want to feel good for 80% of the time - if 20 or ( or 10% or 30%)of the time we are symptomatic - I would think we still need treatment?

I want what the people I know (and have talked to) who are in remission have - they feel good everyday - there’s no ups and downs - wondering how they will feel day to day.
They aren’t symptomatic 5 days a month.

I don’t see it to be an unrealistic goal.

(I’m distinguishing symptoms from leftover ‘damage’)
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

Post Edited (Girlie) : 5/9/2018 9:46:52 AM (GMT-6)


astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 5/9/2018 9:52 AM (GMT -6)   
Girlie said...


(I’m distinguishing symptoms from leftover ‘damage’)


Thats the difficult part for many of us. And thats reality.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 5/9/2018 10:06 AM (GMT -6)   
Girlie said...
Dacarte - I’m not sure I want to feel good for 80% of the time - if 20 or ( or 10% or 30%)of the time we are symptomatic - I would think we still need treatment?

I want what the people I know (and have talked to) who are in remission have - they feel good everyday - there’s no ups and downs - wondering how they will feel day to day.
They aren’t symptomatic 5 days a month.

I don’t see it to be an unrealistic goal.

(I’m distinguishing symptoms from leftover ‘damage’)


Girlie,

I share your perspective on this. I don't buy in too much to the "residual damage" explanation, although I'm sure it's true in some cases. I am inclined to believe that many people accept that theory too readily because their quality of life has reached an acceptable level, and they are tired of treatment and the herxing or side effects they have from it. They're ready to be done.

I would not be surprised if those folks would have significant increases in symptoms of coinfections if they suddenly switched to high doses of some potent treatment for those infections, especially if it's treatments they haven't done before.

I think a good bit of lingering symptoms is actually lingering coinfections as opposed to any "residual damage." Residual damage wouldn't cause herxing or increased symptoms in response to treatment. I also don't think residual symptoms would randomly come and go like Lyme/co symptoms typically do. Just my opinion.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 11:17 AM (GMT -6)   
WalkingbyFaith said...
Girlie said...
Dacarte - I’m not sure I want to feel good for 80% of the time - if 20 or ( or 10% or 30%)of the time we are symptomatic - I would think we still need treatment?

I want what the people I know (and have talked to) who are in remission have - they feel good everyday - there’s no ups and downs - wondering how they will feel day to day.
They aren’t symptomatic 5 days a month.

I don’t see it to be an unrealistic goal.

(I’m distinguishing symptoms from leftover ‘damage’)


Girlie,

I share your perspective on this. I don't buy in too much to the "residual damage" explanation, although I'm sure it's true in some cases. I am inclined to believe that many people accept that theory too readily because their quality of life has reached an acceptable level, and they are tired of treatment and the herxing or side effects they have from it. They're ready to be done.

I would not be surprised if those folks would have significant increases in symptoms of coinfections if they suddenly switched to high doses of some potent treatment for those infections, especially if it's treatments they haven't done before.

I think a good bit of lingering symptoms is actually lingering coinfections as opposed to any "residual damage." Residual damage wouldn't cause herxing or increased symptoms in response to treatment. I also don't think residual symptoms would randomly come and go like Lyme/co symptoms typically do. Just my opinion.


Well, I'm not saying that there won't be residual damage for some people...eg - I don't know if my collagen will ever come back...doubt it...but that's not an ongoing symptom...I'm not losing anymore.

But things like twitching, memory issues...sore feet....etc. things that I would call symptoms - I wouldn't want to have them happening 5 days per month.

I have days where I am almost asymptomatic...I figure if that can happen here and there....then it can happen every single day. Lofty goals? maybe.

And I do know people who are asymptomatic...they don't wake up one day and have symptoms...a few days per month.


"I think a good bit of lingering symptoms is actually lingering coinfections as opposed to any "residual damage." Residual damage wouldn't cause herxing or increased symptoms in response to treatment. I also don't think residual symptoms would randomly come and go like Lyme/co symptoms typically do. Just my opinion."

I agree. with the randomness....and flares especially on targeted treatment.
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

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 282
   Posted 5/9/2018 11:30 AM (GMT -6)   
I wish I could say that I would be able to recognize when my memory issues resolve Girlie. I think the cognitive ones are going to be the hardest ones for me to assess. Whenever I complain about short term memory people always say ‘oh yeah, I have that too’ but it’s so different in terms of severity. I’d like to think I’ll get back to where I was before and recognize it.
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 11:37 AM (GMT -6)   
sandyfeet said...
I wish I could say that I would be able to recognize when my memory issues resolve Girlie. I think the cognitive ones are going to be the hardest ones for me to assess. Whenever I complain about short term memory people always say ‘oh yeah, I have that too’ but it’s so different in terms of severity. I’d like to think I’ll get back to where I was before and recognize it.


Well, I know I am much better than before...but still not totally better.


I would wake up in the morning...not know what day of the week it was...whether I had any appts or plans for the day...
I had trouble paying our bills...

My husband would be talking to me...and this is what I heard:

/www.youtube.com/watch?v=2JtoZ2Clh3Q

I think if you get to the point where you don't know if you're brain has totally come back...then it's most likely a good thing.
When my brain was really bad...I knew it was.


I drove our car for a few months without insurance....good thing I didn't have an accident.
When the notice came in the mail, I filed it with the paid bills...
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 : 4879
   Posted 5/9/2018 11:55 AM (GMT -6)   
Some examples of known damage from long term bacteria infection exposure (not just lyme bacteria):

-Blindness (and I know someone permanently blind in one eye from lyme)

-Autoimmune; can be reversed if caught early but the first part is "auto" for a reason, the cause doesn't always need to remain present.

-Bone loss, structure problems, scoliosis

-Nervous system issues

these are known facts, not opinions

Taking note of randomness and flares takes some question out of the deal. Autoimmune can wax and wane on its own though, not always the same intensity.

It can be easy to have opinions without experience, but more accurate with experience.

Post Edited (astroman) : 5/9/2018 11:58:55 AM (GMT-6)


sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 282
   Posted 5/9/2018 12:25 PM (GMT -6)   
Girlie said...

I think if you get to the point where you don't know if you're brain has totally come back...then it's most likely a good thing.
When my brain was really bad...I knew it was.


I’m hoping so. I guess one of the things always in the back of my mind is that I’m not perimenopausal yet but I will be coming up to it by the time I’m finished treating in a year or two (or three?!!) and so it will be hard to compare a new normal to what I remember before I was sick.

I’m definitely not settling for good enough with the clear symptoms but I am hoping to settle back into a comfortable fear-free everything in moderation lifestyle again someday.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 5/9/2018 12:27 PM (GMT -6)   
Astro - regarding the autoimmune - you're talking about measurable autoimmune 'disease's, right?

like thyroid, RA...etc where a blood test shows something?
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 : 4879
   Posted 5/9/2018 1:17 PM (GMT -6)   
Girlie said...
Astro - regarding the autoimmune - you're talking about measurable autoimmune 'disease's, right?

like thyroid, RA...etc where a blood test shows something?


Yes, those varieties and the like with known specific antibodies vs others that are more of an educated guess (which might be something else).
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