posted
In reading hundreds of forum posts, it seems the take-home point is that people don't recover, even with antibiotics.
And the literature suggests that the lyme bacteria never completely leave the body, as it seems it is impossible to eradicate them thanks to their cyst formation, etc.
Just wondering what to expect. For miscellaneous medical reasons, I can't take most antibiotics.
I'm hoping recovery is possible, because someone said 1 in 15 people has the bacteria in them, and I don't think 1 in 15 people are disabled and bed-bound?
Posts: 200 | From Ohio | Registered: Apr 2016
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me
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There have been people on here who have been bed bound and can't leave their home who have recovered. For example, Phoiph did it through hMBOT after failing all other treatments and being released from doctors and was told she was the worst case ever seen.
I have been able to work but had been completely bed bound otherwise for years--just work, doctors, and bed. I can go out now other than work more than I have in a long time. I have more energy. Many of my symptoms are gone or have lessened.
It still isn't a cakewalk and isn't fun and I'm undergoing treatment, but since going to the right LLMD since just August of 2015, I've made huge progress. It had progressed to my brain.
Yes, some people never recover. Some have limited lives. Some return to full health. Don't lose hope. All of my hope was gone and I KNEW I was going to be a hopeless case. Prayed not to wake up nightly and prayed not to live daily.
I'm able to enjoy life a lot of the time now and don't want to die. Again, it's not easy, I'm not well YET, but I'm going to keep fighting.
We will help you here all we can.
Posts: 1431 | From USA | Registered: Mar 2015
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bluelyme
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Thanks me...i am having a really hard day today...and thinking the same thing...i have been going on sheer will power for months now and am so tired...i see others without the muscle wasting and im like why cant i be happy healthy. ..i got little savings and bees are having strong reactions..so i am thinking iv ,rife and /or mhbot...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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me
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posted
Bluelyme, You can always PM for support. I've made a few very dear friends on here. After PMing for a while, we now email, text and call each other regularly. We've helped each other through the hard times, harder times, and times we feel we can't make it.
Someone on here, I don't remember whom, posted that people "don't get it til they get it." We laugh, cry, vent and are able to find humor in the miserable things that only us lymies understand.
It can get better. Don't get me wrong, I have days and periods of time that are complete misery. But I NOW have days and periods of times that are joyous and I feel alive again. There is hope for the "hopeless."
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Jordana
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I think the key is not to panic.
I really did not think I could have Lyme -- I just couldn't let my brain go there or something for a full year. I went to a thousand specialists,none of them would diagnose me with anything and until I got my Igenex results I was still not convinced because, well...I really didn't *want* to have it.
I spent a year reading about it though.I've been to ten thousand blogs, read a million posts,read every book I could find on Kindle.
What I think is that since the life cycle of borrelia is so long, and because it is so pleomorphic,whatever you do to treat it has to be very long term. I'm talking years with slow progress.
I've seen narratives of Lyme bloggers who have done multiple IV abx courses and are still not well. This really bothered me until i realized that borrelia doesn't care -- you can only kill them with abx when they're dividing, and some portion of them will always survive.So you just have to keep up the onslaught.
People who are on two years of abx and go off abx-- relapse; especially it seems if it's a really hardcore treatment. I think anyone can get better but I'm putting the average at five years to the finish. Or maybe you can really never stop. If you're still herxing --- then you're still sick.
So why are we still reading about people who were on three months of IV rocephin and then sent on their way? No, they're not going to recover; they haven't even covered two life cycles of borrelia at that point.
I think you just have to treat, and keep treating. An LLMD can help manage your case, prescribe and rotate medication and so on but persistence seems more important than anything else.
Posts: 2057 | From Florida | Registered: Feb 2015
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lpkayak
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posted
Make sure you check out how mold exposure is related. betterhealthguy.com writes some about it. I know some who got the mold under control and then a lot of lyme sx went away
Others say they respond better to lyme tx after taking care of metals
But its not easy. Its been part of my life over 30 yrs now.
One more thing...genes. i think they say now 20% of population has genes that make them get and stay sicker than others
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bluelyme
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Thank you thank you thank you...i have met a few nurses that lead semi normal lives...every one of my sx tells me to panic and do more...i did a lot of txs this week and feel awful so thats good ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Tincup
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Here is a new book- sorry I can't see it to read it- but it sounds interesting and is about a success story.
And people DO get better! All the time! They are so much better they don't stick around- they get back to their lives.
Being here nearly forever, my estimate would be for every one person still having a rough time of it, at least 200 others are better and have moved on. Maybe even 300 for every one still trying.
They may still have the bacteria, but that is like having 10 toes with crabs biting on each of them all the time.
That, compared to only one toe having a crab biting it once in a while. Although not 100% perfect, life is much better and you can function pretty normally.
Jordana
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posted
Yes, thanks, Tincup. So good to read this from someone who would know.
The internet is full of so many horrifying stories about Lyme. No one EVER says what you just did.
Posts: 2057 | From Florida | Registered: Feb 2015
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LisaK
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posted
I found staying focussed on one day at a time helps me greatly. ... and if that one day is down in the pits of hell's belly then I remind myself that this too shall pass, and it does. always does.
as long as you keep working at staying as healthy as possible you will see improvement I think. even if it's 2 step forward, one step back. that still counts.
hang in there. your new normal will be different , but possibly better in some ways too.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
In my circumstance, the answer is no. But like all of the ads for anything they sell these days or for doctors you see, individual success may or may not be the same for everyone. THE OLD TRIED AND TESTED....HEY! NOT OUR FAULT IF IT DOESN'T HELP~
Lots will give advice, given in good faith but not the answers. This is the only disease I've ever heard of yet, yet alone lived, where we accept that if you treat and feel worse, then that's a good thing. And if something doesn't work for you, then you're either not doing it right, or it's something else too. And the weirdest thing is that most who offer the most advice over and over again are still sick!? So, why are they saying anything as if an expert? It's a puzzle to me.
We're told to accept what we cannot change but no ways on how to live through the nightmare. We apologize for being sick and needy and people get rich selling treatments/books/therapies without proof they work. Scam artists abound. Some fail but are still so idolized, they still soar in popularity as a saint who is trying to help.
Good people try to help but you'll have days of wanting to say, "oh please stop b/c I cannot take one more pep talk." But you don't because it would be rude and unfeeling and they are only trying to help. Sigh......
But you could be different so hold on to that hope. Some days, it's all we have or can hold on to. And some days, just knowing that you are not alone helps you cope just a bit better. Tomorrow may be different so don't give up ever, because failure is not an option.
Hope I don't get bashed for saying my truth b/c I just wanted to be honest with you and the honest truth is, "I simply don't know."
Posts: 867 | From PA | Registered: Jan 2006
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posted
I can't accept the theory that you need to treat for 5 years or so．
My gut feeling tells me if something does not work within a given amount of time, like a few months it's likely will never work. It's silly to keep the same thing going for years.
All the people on the internet told me I have a positive lyme diagnosis based on my igenex test results. But I don't feel like that sick. I do have bad days, but most of the days I'm ok, not with the optimal health, but I can live with it. I don't feel like to put myself into illness by nonstop drugging and mental confirmation that I'm sick.
These are just my thoughts recently. I really want to forget about all these diseases and start living again. But probably it's just wishful thinking.
Posts: 101 | From nowhere | Registered: Aug 2013
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ConnieMc
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posted
Just to add a little hope to this thread, I was infected in 1998 and not diagnosed until 2001. I was here at Lymenet alot from 1999 to around 2005. Been there done that with treatment. Diagnosed with lyme, babesia and bartonella. Lost my career, was on SS Disability for about 3 years. Had iv, all sorts of oral abx. And various nutritional therapies. I did get well, started a new career, went back to working out and running, and got my life back. This disease is difficult as different things work for different people. Way too much trial and error. I probably wasted 10s of thousands of dollars trying to get well. A biggie for me is keeping a really healthy immune system, good quality food, mostly organic, getting plenty of sleep and exercise, and avoiding stress. It troubles me that in many ways,the politics of Lyme haven't changed much over the past 17 years I have known this disease. Hope this provides some hope to some of you.
Posts: 2275 | From NC | Registered: Oct 2000
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posted
Thank you so much for this post ConnieMc, I really needed to hear that encouragement. I wish you continued health and best wishes for all the years to come!
Posts: 96 | From USA | Registered: Sep 2013
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quote:Originally posted by ConnieMc: I did get well, started a new career, went back to working out and running, and got my life back.
May I ask when you have a big gap on your resume, why can one start a new career? I feel my career is over. Need some help. Thanks for sharing your success story!!
Posts: 101 | From nowhere | Registered: Aug 2013
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Tincup
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HWW- you said.. "And if something doesn't work for you, then you're either not doing it right, or it's something else too. And the weirdest thing is that most who offer the most advice over and over again are still sick!? So, why are they saying anything as if an expert?"
Let's say you got a dertin stain on your shirt. No one ever had one before, so you don't know what to do. You try vinegar. It helps, but you still see the stain after several washings.
Then you try bleach. It helped too, so you try using bleach thru several washings. But, you could still see the stain a few washings later.
OH, says the robin bobbin, who also has a dertin stain, you need to bleach it when it is dry, not wet. So you try that because robin bobbin said it might help- and it worked for her. But it didn't work for you. ??
Oh no says looit bookit. You need to bleach and put oxy on it too. That worked for me.
Then eventually 3 of your friends get that dertin stain on their shirts too. They ask for your help and you tell them what has helped and offer whatever encouragement you can.
But not all who get dertin stains are dertin free at that point.
Science comes along FINALLY and starts filling in some of the blanks. Ahhhhh! Now you can adjust your stain removal procedure, and you do. Some of your friends do too, and it works for some, but not all. ??
Turns out those it didn't work for ended up getting a dertin stain AND until now an unknown picct stain too!
Back to the drawing board. Those who had success getting rid of their dertins are at the local carnival now having fun and have forgotten about the dentin problems. Those who still have the stain know what worked for others, but to date for some reason it didn't work for them.
They keep trying though. Some while waiting for answers are getting worse and some die from the detrain stains.
Science then says oh, you also have a blip blip stain we didn't know about along with that dertin and picct stain too . Not sure about all the details, but 10 days of doxy will certainly get rid of it.
While the previous stain owners are out having fun, the others are still too stained to join them. They stay behind because even though they can't get rid of their combo stains for reasons science hasn't figured out yet, they can help educate others and offer suggestions about what can be done.
Tincup
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posted
Packy said.. "My gut feeling tells me if something does not work within a given amount of time, like a few months it's likely will never work. It's silly to keep the same thing going for years."
So we should stop cancer treatment within a few months and just give up?
Or treatment for TB or other maladies that are not cured in a set length of time?
Now, antibiotics, though hard to accept having to take by anyone who has to take them, DO help some people. Will they cure everyone? NO. But, what other choices do we have?
We are all fudging our way thru this miserable disease the best we can. Certainly the insurers, IDSA/CDC etc. aren't helping. We are on our own.
For decades we've been saying we are still sick after 2 weeks of antibiotics. We went so far as to say we are still infected when the "experts" said no.
Listen to Dr. McDonald in Under Our Skin. He says the patients were right. He has proven we were. We are still infected.
We can only pray that good science will catch up and find a cure for those still here who are sick and helping folks.
posted
Tincup, I totally understand the situation. But, does more antibiotics or longer treatment equal better cure rate? That's what I'm trying to find out.
I think those LLMD's who had successfully or unsuccessfully treated loads of patients should publish their findings/data with scientific methods. Dr.Sapi and Dr.McDonald have done excellent jobs in research, but no LLMDs from what I know has published equal quality work in treatment.
Posts: 101 | From nowhere | Registered: Aug 2013
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posted
I agree that the recovery stats are probably far worse than we are led to believe. Buhner claims 70% remission rate but I am extremely skeptical of this statistic. I have read Cowden claims 70-90% as well.
I saw a well known LLMD who claimed I would just need to take some Samento and Banderol for 6 months to heal from a 20 year long chronic Lyme infection. I never went back to him.
Everyone has a "cure" they are peddling and they all oversell it. You can just read all the negative reviews of these in-patient clinics where they push Lyme patients out the door still completely ill after having taken their $50k.
Imho the limiting factor in Lyme recovery is being able to detox all the dieoff byproducts. There is so much biofilm and junk built up in our systems that it takes a really long time to be able to remove it from the body without overloading the organs of elimination.
I think a reasonable analogy is that they still amputate seriously infected limbs when they are considered beyond saving. I think a similar situation exists inside Lyme patients only its hidden.
A toxic infected body like this is not one that can be fixed overnight. It is an enormously difficult process that will often take years if it can be done at all. I would personally peg the chronic Lyme recovery rate at 15%.
The question is if most recover than where are they? The often repeated argument is that the people who recover run away from the forums and support groups never to be seen again. To me this makes no sense. They really aren't even going to post a success story?
The people who do recover are looked up to in an almost godlike fashion. To me the argument that most who recover run away and forgo the praise from the only people who really understand their accomplishment doesn't carry much water. I think the silent graveyard consists of people who are still sick and have thrown in the towel in this brutal fight.
I'm not trying to kill anybody's hopes but prepare them for reality of the situation and enormous challenge that lies in front of them. If you don't take it seriously you'll certainly not be in the handful who manage to overcome it.
Posts: 131 | From CO | Registered: Jul 2015
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TF
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This is the statistic that my lyme doc (who cured me) has on his website:
"Although I hesitate to use the “cure” word in relation to chronic Lyme, the principles in this book have resulted in a greater than 90% response rate in my patients. At least 60% of my patients achieve long-term improvement that allows them to get off of antibiotics completely."
The book is "The Lyme Disease Solution." My doctor is a very ethical person, so the statistics he gives can be trusted.
I and at least 5 of my friends got rid of lyme. None of them but me posted on LymeNet. So, none of them came on LymeNet to tell their success story. Only I know it.
Most folks who get rid of lyme really, really, really do not care to come on LymeNet and help others. It is rare for a person to want to do that.
And, guess what? It is RARE that I get a "thank you" reply from all the people that I send tons of information to regarding good lyme doctors.
Instead, I hardly ever hear anything back from the vast majority of them. And, a small percent treat me like an information machine. I send them info, they ask for info on 3 more docs. I send it, they ask for info on 5 more docs, etc.
And, rarely a thank you. So, I am still waiting to be "looked up to in an almost godlke fashion" project.
Since I know so many personal friends who got rid of lyme disease, and since I have been in the lyme world for at least 13 years, I can tell you that the statistics given by my doc above are likely right.
Most people are helped by the Burrascano-type treatment (high-dose combos of antibiotics, supplements, special diet, and one continuous hour of weightlifting every OTHER day) and at least 60% get cured.
I had undiagnosed lyme, babs, and bart for at least 10 years. Still, once I got to a lyme specialist who followed Burrascano, I got well.
I wasted 2 years in treatment with so-called lyme specialists.
So, the doc is the key. I can't emphasize that enough. If your doc isn't getting people well, he is not the doc you want.
I believe in the Burrascano protocol because I have seen it work over and over again with my very own eyes.
I believe that if more folks could afford a good doctor, more would be cured. Too bad most folks don't save money nowadays for emergencies such as lyme.
I also believe that if more docs had the nerve to use the Burrascano protocol, more would get well. As it is, folks wander around in the lyme doctor learning curve for years in some cases (just like me).
So, I am one of the VERY few that stick around to tell folks who the good doctors are. It takes a lot of time. And, the treatment you get is overall rather poor. And, it can get tiring to try to educate people over and over again and put up with their uninformed questions, arguments, and down-right nastiness in some cases.
That's how this "god" has been treated in the last 10 years on LymeNet. Just reporting my experience so y'all will know what it is like to be me.
And, based on what I have seen on LymeNet over all these years, I would say that there are a fair number of lyme patients who will NOT obey the rules on drinking and smoking. Every so often, they come out and say that they drink every day! And, you don't know it. You just know that they are not getting well.
And, then there is the group that smoke and you don't know it. (Imagine trying to be cured of cancer while still smoking.)
And, then there is the group that will NOT take antibiotics. So, you add them into the statistics and what you see on LymeNet.
These 3 groups add up to a fair percent of lyme patients.
So, for those of you who are new to the lyme world, start off with a very experienced lyme specialist who follows Burrascano. A large percent of people will be cured this way.
If that doesn't work, then search for a cause. Study the Burrascano Guidelines. Follow his rules for getting well:
"CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired.
2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps.
3. Absolutely no alcohol!
4. No smoking at all.
5. Aggressive exercises are required and should be initiated as soon as possible.
6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index.
7. Certain key nutritional supplements should be added.
8. COMPLIANCE" (page 27)
You have to do everything the doctor tells you to do. Don't do anything that weakens your immune system. And, devote your entire life to getting well when you are treating lyme. Like an athlete training for the Olympics. Give it all you've got.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote: "Although I hesitate to use the “cure” word in relation to chronic Lyme, the principles in this book have resulted in a greater than 90% response rate in my patients. At least 60% of my patients achieve long-term improvement that allows them to get off of antibiotics completely."
90% responded, big deal, some minimal response should be expected to such a heavy protocol.
60% were able to get off antibiotics completely. The question is at what level of functioning, and were they still on some kind of herbal protocol at this point?
My sinking feeling is that very few people ever regain their pre-Lyme level of functionality.
Even people on these boards who have "recovered" from Lyme are often battling something else. Candida, adrenals, thyroid, etc. They often are supported by a partner and don't fully reenter the workforce.
I've seen your posts before about Burrascano TF. I don't doubt that he is one of the best LLMDs out there. However his own statistics indicate that 40% of his patients can't get off antibiotics and gives no indication of the level of functionality of the people that do.
It's also questionable to get the statistics directly from the providers without any kind of review. What about patients that fire their LLMD because it's not working for them? I'd be willing to bet that they are quietly dropped from the statistics for "non-compliance" and don't skew things downward.
The few on this board who have recovered all have "the solution". It may be Burrascano, photons, or mHBot. I think its noble that the survivors post about what worked for them and don't blame them for touting it as the best way. My concern is that there are so few of you out there.
I think it's relatively easy to have some kind of response to various treatments and go from bed or wheelchair bound to semi functional.
However many of us need to be able to work and have a desire for some kind of quality of life post-Lyme. The real statistics around being able to do this aren't encouraging.
Posts: 131 | From CO | Registered: Jul 2015
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TF
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You are obviously in a very negative place.
"My sinking feeling is that very few people ever regain their pre-Lyme level of functionality."
"However many of us need to be able to work and have a desire for some kind of quality of life post-Lyme. The real statistics around being able to do this aren't encouraging."
I have the same life I had before lyme disease and so do my cured friends. I worked full time until I retired.
Please tell us where you get "the real statistics."
Seems like you just don't want to be persuaded to look at things any differently. I'd like to see the facts you rely on that cause you to be so negative.
And, how much experience do you have relating to others who have/had lyme disease?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Well you seem to be in a very positive place. I probably would be as well if/when I manage to recover from Lyme and also retire. Your perspective is not necessarily any more accurate than mine.
I have a uncle who recovered from Lyme (caught it early). My mom is currently battling it despite having caught it early. I've also attended various Lyme support groups. So I do have some experience with this disease other than my own case and what I encounter on the forums.
My fears stem from statistics such as the ones presented in this study:
Jordana
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posted
I'm pretty overwhelmed by this conversation today.
But project...just want to point out, don't you think Lyme Policy Wonk's respondents might themselves have a skewed outlook?
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
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I mean I guess I'm trying to be hopeful about my long term outcome because I just started. But it seems like a lot of those respondents are coming from a very dreadful and ignorant period about chronic Lyme and Lyme in general. Years and years of being misdiagnosed, battered and misunderstood means that a lot of these people didn't get treated, for years, or maybe they *never* did, and the whole time the docs were refusing to treat them unless they just happened to be one of the lottery winners who became patients of Dr. Burrascano.
It's not like that now. You know twenty years ago I would not have even known what was wrong with me probably ever. I'd be headed for a wheelchair or somebody's back bedroom instead of thinking I can get treatment and live a reasonable life.
There's going to be a huge difference I think now just because people are not in the dark anymore and they can demand their own testing. People look online and see what this is and start to understand what they should be expecting for treatment.We might always have a chronic illness but our chances are better now than they used to be.
I don't know if I ever expect to work again or have an amazing quality of life but I'm hoping for improvement - slow improvement and a life beyond my bedroom; with treatment with long term, intelligently dosed and timed antibiotics. I think that's reasonable for now.
There is sooooo much stuff online about Lyme -- there are the hero recoverers and the long term sufferers and the horrifying outcomes and the Lyme Lifestyle Families. You have no idea where people are coming from. I was reading a post the other day from this woman asking questions about some drug because she didn't want to start a new med on her family vacation to Disney World.
Hardship is subjective, you know?
I wouldn't necessarily believe everything you read.
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
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posted
This subject got me thinking about a quote and I tried looking it up to get the exact wording. Couldn't find it, but saw this one...
posted
I don't think we can just assume that people that leave the boards are all in remission. More likely they mostly fall into the group that was surveyed in that study. They consider themselves to have incurable chronic Lyme and have more or less accepted a low quality of life.
Consider how many people are willing to take the time to post a detailed review of some widget they bought on Amazon. It always amazes me. Now you're saying all these people are somehow unwilling to post a review of their successful treatment that brought them into remission and completely changed their life? I doubt that this is truly what is happening.
It's sort of the "lyme less live more" philosophy of that girl who was in Under Our Skin. At a certain point you get sick of of the failing treatments and the herxing and just try to make the best of a bad situation and carry on with whatever life you've still got.
I'm not in that camp yet, I'm going to fight this with all I've got. But so far my experience is that this fight is much harder and the outcome much less certain than many want to believe.
Posts: 131 | From CO | Registered: Jul 2015
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Jordana
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I think there's another possibility.
Steere et al are misguided for sure but their observations have been that it takes a long time to get over a treated infection.
You go on abx, you feel like hell, from dieoff and so on, and that takes a couple years. Then you start tapering or whatever but essentially when you come *off* abx there's another reaction as your body gets used to being without them.
Then there's the residual damage, which can slowly go away but leave you with some reminders.
So maybe there's a set of people who are healing slowly but are not confident they're healed or in remission or that they ever will be. And they probably just don't want to talk about it anymore.
Here's the thing -- treatment might not bring people to 100 percent of what they were. But it might pull them out of hell and far away from where they might have ended up without it.
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
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Project- You are right. Not all, and I didn't say all, of those not here any more are living a perfect life.
But, I am positive that more of those who are no longer here are well, than not well.
I've been assisting patients for decades and if they get good information and get feeling better they immediately go back to their lives trying to catch up on the time they've missed and you almost never hear from them again.
Lyme was a bad chapter in their lives and they want to forget it ASAP. Very few stick around to even say thank you, I am doing better, and or to help others.
posted
TF, I won't look up to you in a godlike fashion :-) but I do want to let you know how much I appreciate your contributions. You are the voice of reason in many threads and the information you share is a reason for me to come here.
So: thank you.
Notti
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me
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TF and Tincup, Thank you both for sticking around and being rays of light while others are navigating our way through this. You both could have left like many others, and I wouldn't have made the progress I've made had it not been for the help from both of you.
Posts: 1431 | From USA | Registered: Mar 2015
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You go on abx, you feel like hell, from dieoff and so on, and that takes a couple years. Then you start tapering or whatever but essentially when you come *off* abx there's another reaction as your body gets used to being without them.
I just think there is a tendency in the Lyme community to underestimate the difficulty of treatment and oversimplify what is really necessary. It's like we basically just take the IDSA guidelines but change the 2 weeks to 2 years. Or assume that the Burrascano guidelines were handed down from heaven. If only we all did light weightlifting every other day we'd all be in remission right now.
There is also this Pollyannaish attitude on the forums that everyone who disappears must be better. This justifies peoples' beliefs that it's relatively easy to get well, and the mods' beliefs that they were able to help them.
In the end we need better statistics and better treatments. Sticking our heads in the sand is not going to help make things better for Lyme patients in the long run.
Posts: 131 | From CO | Registered: Jul 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Actually I think extending the IDSA guidelines from two weeks to two years is a good start.
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
quote:Originally posted by Tincup: HWW said.. "We apologize for being sick and needy and people get rich selling treatments/books/therapies without proof they work."
I may be wrong, but no one here that I know of is getting rich spending their precious time trying to help others the best way they know how.
The members here are kind, generous, and are doing their best trying to find answers to help themselves and help others in the process.
posted
Tincup, please let me clarify that I did NOT say anyone on this board is getting rich.....I was referring to book authors, scam doctors, experts who claim they know answers when they clearly don't, etc.
At no point did I say posters here are getting rich.
And touching on the topic of such large numbers who likely leave when they get better?
Again, my own personal experience was that I joined many years ago and left because I was too sick to even read the board. When I did try to come back, I lost my pw info and ran into obstacles trying to get back on. That's happened to me several times so it may have looked like I left all recovered but didn't. Not sure how many this has happened to in the past. I WISH I would get better and promise I'll come back if I do! ;-)
I do totally agree with you that this board is full of good, well meaning people who try to help and I appreciate and take info from them often--unless I've already tried it with failure or I don't have the money anymore for expensive new doctors/treatment plans. Peace out!
Posts: 867 | From PA | Registered: Jan 2006
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posted
On a more positive note I noticed that the author of a Lyme recovery testimonial book I had read just updated her blog and she's still doing well:
However her experience in the book outlines just how hard it is to recover. She literally tried everything.
Posts: 131 | From CO | Registered: Jul 2015
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Yes, you can get better, I still have to retreat with abx and take meds, herbals and such, but I am working full time.
I still have lyme and babesia symptoms..but I am so much better today.
I take low dose naltrexone and it helps control pain this has really helped me to work full time.
Good luck
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
HWW...
Obviously there are people who get better. And there are also people who do not.
Why do you think you haven't?
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
In medical section I just noticed this comment from a very dedicated, once very ill, and long time member (ConnieMc).
"Used to be active member of this site 2000 to maybe 2005 but fortunately got better and went on with life."
She returned briefly the other day ONLY because she got 2 new tick bites and wanted to know how we are handling that situation these days.
For every ConnieMc example there are hundreds who don't bother posting when they get well and take off.
posted
My husband and teenage son who both treated for several years are better. My husband has had surgeries and cortisone shots with no relapse so in my mind he is cured.
My son has been 99% better for several years. He will have a few symptoms flare up if he gets sick but they resolve in a few days and he is back to 100%. His immune system takes care of what comes out. Its amazing though, still some bugs in there.
I am at a very realistic 90-95% and am thrilled! I used to say I was 80% when I was so sick and probably more like 30%. I am also not nearly as diligent with supplements and preventative herbs and I have not backslided as I would in the past.
Life feels a lot more normal overall. Keep going!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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