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Posted 6/4/2016 11:43 PM (GMT 0)
I will make it plain and simple. I'm 100% sure that I will beat this Lyme little monster thing, but man every time that I google successful stories it's depressing. What happened to all the cured people out there? All that I read is about suffering, never ending pain for years or decades, and misery. Good thing that I don't drink because every time that I see those posts I just want to drink a bottle of whisky. LOL I personally know people who healed completely from Lyme. So please people if you heal yourself write a post about it so people can see it when they google about the disease. idea
Posted 6/4/2016 11:45 PM (GMT 0)
Sometimes I think people are just so happy to move on with their life so quickly they forget to post back.
Posted 6/5/2016 12:03 AM (GMT 0)
MANY people have passed through this forum and have come out on the other side as healed and have gone back to their lives. Often they don't return because they are busy trying to get back to their lives (and often trying to make up for lost time). And often, it's too painful to revisit their illness... way too painful.

I think that holds true out there in the real world, too.

I wish there were more accessible success stories for us to grab inspiration from--but they are out there. You have to explore the lyme stories in moderation... your state of mind is a critical tool in healing and recovery. Your ability to see beyond the current illness is the only way to actually get there.

-p
Posted 6/5/2016 1:50 AM (GMT 0)
R.V. - That's the spirit: HOLD ONTO IT AND NEVER, EVER LET IT GO!! I agree with Mustard Seed and Pirouette. It is not my story YET, but I am still hopeful!! I can crab and cry and rant, but at the end of the day, WE MUST NOT GIVE UP!! So, I am SO glad you posted this - you have fighter instinct and you know, God never gives us more than we can bear - everything is some lesson in our individual journeys we must figure out and WE WILL GET THROUGH THIS, R.V- BELIEVE!! AND keep being PROACTIVE!! If you believe You WILL succeed!! I love that you posted this !!
Posted 6/5/2016 2:06 AM (GMT 0)
Both my daughter and I are better, although we remain on low doses of some herbs (antibacterial and immune supporting).

I have spent the better part of 6 years of this forum and the PANS/PANDAS forum. It was from these forums that I learned what my daughter was suffering from, and also how to treat her. If I hadn't googled and simply followed our PCP's recommendations (Ritalin, klonopin, and a good spanking), who knows where we would be now. I know we would not be asymptomatic.

Our doctor told me to stay away from google. I'm personally glad that I ignored his comment. It is only by educating ourselves that we can take back our health, and not leave it to Big Pharma, Big Agriculture etc. to look after us. They don't have our best interests at heart - it's all about the money you know.

Here is a good site. The woman here uses pretty much the same protocols that we do, both herb and diet wise. Although we haven't made the big effort with parasites that she has.

realfoodrebel.com/
Posted 6/5/2016 2:51 AM (GMT 0)
I am on a maintenance dosage of herbs and feel pretty healed. Although it is so new to me that I still knock on wood when I say that.

I did it by trial and error and boy did I do a lot of wrong things as I tried to heal.

I gave up on doctors and meds and went my own way via herbs, common sense, healthy foods and most importantly I REALLY believed that I would heal. A lot of my healing was attitude and positive mental thinking.
Posted 6/5/2016 7:05 AM (GMT 0)
Google helped me find this forum and discover the roots of mg motor neuron dis function...may have saved my life ...learned all about the drug that i shouldnt have taken .ya its sad to see so many hurting souls ... i am convinced like gergia hunter that all illness is rooted in pathogens and i theorize that 90 % of people have a spirochette sy.stemic infection...its tuskeegee gone awry for pop control thus the isda bs .but without the all seeing eye of google i woullda let them kill me ...a friend made a bumper sticker that promoted skynet by saying google for president ...right now ...hmmm
Posted 6/5/2016 2:24 PM (GMT 0)
Google is where I found my problem too after 2 negative tests for Lyme. My docs said that I didn't have Lyme for sure... lol What I mean is stay away from google to look for successful stories what is almost impossible to find on the internet. Sometimes we need encouragement but google will not be the place for it... because all the cured people disappear from there.
Posted 6/5/2016 2:47 PM (GMT 0)
Another one here with a "Google saved my life" story. But, since you are looking for success stories, here are a few that I have tucked away from this forum:

www.healingwell.com/community/default.aspx?f=30&m=3069820&p=1


www.healingwell.com/community/default.aspx?f=30&m=3084102


www.healingwell.com/community/default.aspx?f=30&m=3509582&g=3509821#ttop


And one thread from another Lyme site that I belong to:

flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=015820;p=0
Posted 6/5/2016 2:50 PM (GMT 0)
Google is a good start,however,imo......not a place to sit and read the same recycled info...over and over.

I am still trying to heal and see the light at the end of the tunnel.....much more work than expected,however,my health is important.

Many are healed and move on....it would be heartbreaking if all the posters stayed?

r
Posted 6/5/2016 2:59 PM (GMT 0)
I think almost all the available information about chronic Lyme is distorted.

Mainstream medicine will tell you that it doesn't exist and you're just crazy.

LLMDs will generally oversell their protocol and state that they have a relatively straightforward path to remission in < 1 year.

The online forums are not designed to give unbiased information. Their whole mission is to provide hope to the despondent. Hope is often what is needed, but at the same time it also distorts the truth.

I simply don't buy the whole line that everyone who recovers immediately logs off the forum without posting a success story and never returns. People spend hours posting reviews of some stupid widget on Amazon. They really aren't going post a story of the treatment that allowed them to recover and changed their life?

In all reality, I think the stats for chronic Lyme recovery are far worse then anyone is willing to admit. Many people never get better, many relapse and many who say they are healed really aren't.

I just wish I had this information when I was starting out. It's much harder than anyone is willing to let on, the forums often make it seem like it's a cakewalk. People should really steel themselves for a multi-year fight with no guarantee of a successful outcome.

By not distorting the true difficulty of recovering from Lyme I think more people would actually end up recovering. They'd be able to plan and budget more appropriately for an extended fight where they may not be able to work. And they would try more "out there" treatments initially rather than waste precious time on the standard treatments that have failed time and time again.
Posted 6/5/2016 3:36 PM (GMT 0)
Project, having been on this forum for 9 years now, I've talked with many that have healed and just moved on from this forum, and their words were, it was too painful to go back and recount the details and answer questions about their journey, "I just want to get back to my life".

But I do agree with you that things are distorted, as we often just have a member drop off. That's one of the reasons I've stayed - then of course, I got reinfected and now have a need to be here again for myself.
Posted 6/5/2016 4:54 PM (GMT 0)
I actually found a lot of success stories. I forget the forum but there was a thread that were several, several pages long. Where I spent a couple hours reading tons of success stories.

I've also found many blog post of people who shared their success story.

The most interesting one is one of a doctor. From lyme, it changed his whole view on medicine. He admits at first he just thought you can bombard it with abx. It wasn't until he eat extremely well, followed Buhner's protocol and managed stress and stop being a workaholic did he fully recover.
Posted 6/5/2016 5:36 PM (GMT 0)
Question for you my friend. How do you know that you got reinfected instead of having the same infection that maybe was dormant coming back to haunt you? I see this a lot on the web people getting reinfected many times and I'm here thinking that I was so unlucky to have gotten it and people are just getting it though their livers like it's a normal thing...what makes me think that it's still the same very first infection that they had.


Traveler said...
Project, having been on this forum for 9 years now, I've talked with many that have healed and just moved on from this forum, and their words were, it was too painful to go back and recount the details and answer questions about their journey, "I just want to get back to my life".

But I do agree with you that things are distorted, as we often just have a member drop off. That's one of the reasons I've stayed - then of course, I got reinfected and now have a need to be here again for myself.

Posted 6/5/2016 6:28 PM (GMT 0)
Go to LymeCoaching.com. Many of the 28 practitioners have not only recovered from Lyme, but they have busy careers and full personal lives. In addition, all are available by phone.
Posted 6/5/2016 6:44 PM (GMT 0)
It is scarey....I had odd symptoms.for years and beliwve if i had even botheredntknput all no my symptoms together beforeni last 2 years I feel I could habe healed alot easier.....now I am so tired and non fire fromnhead ri roe allnthe Time its so much harder ...I cant even get a break from it because of the body burn in I try to be positibe ....but
Posted 6/5/2016 6:59 PM (GMT 0)
For me personally, I had a very good year after healing (2013), even though it was full of a lot of stress - my FIL, who was in the last stages of Alzheimers moved in with us. It was round the clock care, with only hubby and myself taking care of him and his needs as well as our own. Had I not been healed, I doubt I would have held up to that. Then my Mom moved closer to me, and as much as I love her, the stress of not being able to rest after my FIL passed proved to be too much and my adrenals crashed taking my thyroid with it in 2013/2014 (it took me a long time to find a doc that would believe me).

I posted about my healing and my reinfection on this forum (can't find the thread, sorry!) and I was absolutely grilled - LOL!! I did appreciate it then though, as it helped me confirm that I hadn't relapsed, but had been reinfected due to the sequence of events, including when the tick attached and symptoms set in.

As for others who say they were reinfected, I can't comment, as it would take me understanding a lot of information about their previous healing and how they came to suspect a reinfection.

But, there is no way to be completely certain, honestly. The testing would have to be much, much more advanced to know when a person has healed, or if they have simply relapsed.

With 300,000 new infections every single year though, it's not a matter of being unlucky, it's a matter of time before everyone we know has it. Some may recover without treatments, but have they really, or is it only laying dormant until the immune function is lowered just enough for it to flourish?

There are many unanswered questions in not only my own timeline, but in many people's timeline. All we can do is "best guess", and that's my best guess. I healed and healed well, my adrenals went down so hard and fast that it took my thyroid on the ride as well, and that's when I got reinfected.
Posted 6/5/2016 11:25 PM (GMT 0)
Project, I tend to agree with you, unfortunately. I hate to be so pessimistic and call this disease hopeless, but you seem to be pretty spot on with your assessment . I agree that anyone who successfully cured themselves after spending months or years on a forum likely would not just walk away without sharing their success. Looking into many of the 'success stories', here and elsewhere, most of them have a percentage as if we are computers and we can quantify our disease state with a number. "Im 80% better" or even 99%. Ive never heard this in cancer or any other disease. Your either healthy or not. No one claims 100 and most are still treating in one form or another. Many others relapse. But we still keep trying. (whats the definition of insanity?) but What is the alternative?

You either try (LLMD's, Ilads) or you deny, and say it must be something else (idsa) This is a tough disease and there are so many variables. Lyme is basically a catch all phrase for any tick borne illness and then you have people who claim they got it from a tear drop or some other indirect method. Some test positive, some don't. It makes you wonder if we are even referring to the same thing.

All that being said, as far as google overall, I just try to gain SOME perspective of how other people deal with this. We like to think the answers would come easy. That's what we expect from the internet. You put in a problem and get a solution whether it's a computer virus repair code or how to change your oil or cook a roast. Unfortunately with diseases, and especially with lyme and co, all you find is more complexity instead of any hard answers. Yet here I am hour after hour looking for some hope, any sense of improvement. I like to have a clear plan before taking any action, ANd I try to learn the pros and cons before proceeding. With lyme this has me paralyzed because there seems to be drawbacks to every approach so I don't try any. You have to have some degree of blind faith and be willing to settle. If not a cure we will settle for a remission. If not remissoin we will settle for a halt in the progression of the diseaese. ANY improvement, and there just seems to be no hard answers. Most offering hard answers are usually selling something. (Dr rawls) Thats not to say that if I truly had a miracle cure I wouldnt sell it and make a fortune.

With lyme it all adds up to the perfect storm of misinformation. This is because mainstream medicine has abandoned us and claimed our conditions do not exist because they can't solve them. They can solve std's, even aids, but they can't solve tick borne diseases of any sort once they have gone chronic. So we are left to our own devices.

Can google help? I'm not any better after scouring what seems to the entire internet. But still I keep trying, for whatever thats worth.
Posted 6/5/2016 11:47 PM (GMT 0)

project said...
I simply don't buy the whole line that everyone who recovers immediately logs off the forum without posting a success story and never returns. People spend hours posting reviews of some stupid widget on Amazon. They really aren't going post a story of the treatment that allowed them to recover and changed their life?

Hi project--
I think you were referencing the comment I made, but this is not what I said or meant. People HAVE posted their success stories on this forum--Traveler and others have been around for years and can attest to that. Maybe do a search and look for them.

What I meant was that most of them do not hang around here years after healing. I wish they would but I think it's obvious why they don't. Many, MANY people have successfully returned to their lives. And they give a "percentage" of recovery--because that is the best way to quantify that they are not cured. Quantifying how you feel on a scale helps you understand your progress and communicate that to your LLMD/ND. Our journeys are rarely linear. There is a big difference between "healed" and "cured". You'll never cure yourself of lyme & co and we make sure people here know that.

I doubt many people will disagree with you that the cards are stacked against us. But the lyme & co infections and the general body illnesses that are common with lyme & co vary from person to person, and many many other reasons contribute to the very personal experience and treatment approach for each person. There is no one-size-fits-all and there is no panacea. We make sure people here know that, too.

And, because everyone's experience is unique, it is very true that some of us, particularly those of us who have gone untreated for so long (like me), struggle a lot more than others. Not everyone faces this journey, though. It wouldn't be beneficial for the general tone of this--or any forum--to be "you don't have a chance..."

I completely understand your frustration and your hurt and anger and resentment. But it's important to recognize the vast experiences lymees generally have.

-p
Posted 6/5/2016 11:55 PM (GMT 0)
logmoss--

See my post to project, above.

I totally get the frustration. But lyme & co is not an analog or a binary problem. Neither is most of medicine, but I understand your analysis and what you're trying to say.

I strongly encourage you to shift your perspective or you will be spinning your wheels painfully... Looking for definitives in this world is a fool's errand. It isn't fair and we're dealing with a life-and-death set of challenges, but it is what it is.

I fully believe that some day this will change--enough to help people like us recover. But we can't wait for that day--we have to figure out how to do the impossible.

Venting is good, necessary - not trying to preempt yours at all.

Just want you to find a homing beacon so you don't get lost in the fury. I've been there, done that.

Last year I compiled a list of a few circumstantial events that have all contributed to this "perfect storm" of lyme & co. There was a recent discussion on the forum and I have been busy with other things and didn't get a chance to post it but I will... I think it helps to know the broader picture of why and how this happened. Some people don't really want this kind of "truth" but I need it. Stay tuned.

-p
Posted 6/5/2016 11:58 PM (GMT 0)
I hear about /read about successful healing stories quite a bit.

I think what gets me is you will see/hear that a LLMD says to someone it will take 12-18 months...or sometimes I've even heard them say 6 months to a year.
I think it can often take two or more years.

When I was at the 12 month mark, I would get discouraged when I read the stories of people healing in that amount of time or less...or LLMD's stating people heal that quickly - because I wasn't close to be healed.
I think they say that to offer encouragement...but for me it does the opposite. I was at the 12 month mark...and thought if I wasn't healed...maybe I never would be.

I think because it's often a lengthy time to heal..that people give up...just can't do it anymore...just don't think they will get better...if they haven't already.

When (not if) I get better...I hope I can stick around on the forum...but it may end up being a trigger for me..reading everyone's stories...I don't know.
I do know that I seem to have PTSD from the early days before diagnosis...hopefully with time, that will resolve and I can read stories that won't 'bring it all back'.
Posted 6/6/2016 12:02 AM (GMT 0)
Girlie--

I hear ya. I was sharing some GI healing info with someone here on a thread and literally had to have a little cry afterwards because it brought back such vivid memories...

PTSD is VERY real and very real for lymees.

-p
Posted 6/6/2016 1:27 AM (GMT 0)
I've read nearly 100 success stories. So they are real and it happens. And that's only lymies that post online. We just assume all lymies or even a majority post online. Of course they dont. If 300,000+ get lyme per year then only a minute percent post online.

It took my llmd 3 years to recover from lyme (after 10 years of infection).

I believe it is very unhelpful for someone to say a false statement like people don't fully heal symptom free all because that person has really been struggling. "If I can't get better then no one really gets better" is incorrect on many levels. Unfortunately bitterness can cause this line of thinking.

I just listened to a podcast today of a fellow lymie who couldn't walk because the lyme was so bad. And now she has been completely symptom free for a year and hope it continues.
Posted 6/6/2016 2:53 AM (GMT 0)
Thanks dacarte3---

Nice post.

I'm one of those people who went from nearly wheelchair bound to walking with a couple weeks of Rocephin. I should have been in a wheelchair but I refused to get one. Thankfully, I started on the abx when I did and they were so effective... that was a scary time.

I'm still in treatment mode because I had a lot of other challenges than just lyme & co (as I think a lot of people do) and thankfully my LLMD is going slow and measured with tx, but I am considerably better than when I started tx. And I know I have a long way to go to get better but I continue to discover new options and things to explore and new levels of healing.

And... I have bad days, weeks. REALLY bad. And I go through the phases where I don't think I"ll get better and I don't think the fight is going to be worth it and I do't think I'm going to win. But I know it's the illness and the infections and I emerge from that dark place--back in charge. I'm in charge of my body, not the illness.

-p
Posted 6/6/2016 2:53 AM (GMT 0)
Like I said before I don't expect people to stay around after they are better because it makes no sense to me, but just write a post and put it on google so we can get motivated by it. By the way Tuesday will be my first consultation with my LLMD..... I'm so happy that I will drive 3 1/2 hours to see him with a big smile on my face.

Post Edited (robby vieira) : 6/5/2016 9:56:05 PM (GMT-6)

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