Posted 7/30/2017 3:21 AM (GMT -6)
Yes I certainly think remission is possible. Its a shame that we are left to do our own research and rely on anecdotes, but since the official science bodies and government agencies such as CDC and IDSA refuse to even acknowledge the existence of chronic Lyme disease, we are left to try to find out ourselves based on anecdotes.
I have personally read too many stories of people drastically improving or reaching full remission for me to believe that remission isnt possible. While unfortunately there are also many stories of people who havent improved despite years and years of treatment. So what is the real truth and why does it seem like online we hear so much of the latter and so little of the former? And which experience is really more common?
A lot of stories I have read seem to have some resolution, whether it be from extended treatment, changing treatment modalities entirely or finding another cause and succesfully treating that.
Most people do seem to report getting better at some point whether they themselves or a family member or friend reports the experience.
This is far from scientific, again because this is based on anecdotal reports from sites similar to this one, and blogs and comments on Lyme articles from online news sites.
Its very hard to get to the actual truth, as there are liars and fabricators on all sides of the argument. The CDC/Idsa lies about chronic Lyme even existing, and further lies about the effectiveness or lack of effectiveness of longterm antibiotics, based on their own studies (but if a disease doesnt exist as they say, how can you find study participants?)
Then there are the other liars and charlottans, (some calling themselves LLMD's) who promote miracle cures and claim exaggerated treatment success rates, so it's really hard to determine how many people actually beat chronic Lyme because the CDC says it doesnt exist and they dont track successful treatment rates, and others make up numbers to sell their protocol or magic potion based on lies.
There seems to be an inherent bias on the internet. Though I have only talked to a few people who I have met who had the chronic version of the disease personally, ALL of those people have improved with treatment over time, but going online seems to paint a very different picture. Why is this?
I think there are many reasons why the internet can create a false image of what Lyme is and how it can or cant be treated successfully. First is the fact that bad news travels faster. Peoples horror stories with Lyme are more likely to be repeated online and by news outlets because the story of someone having severe ongoing health issues and going into debt from a tick bite is more shocking than the persons story who took antibiotics for a few months and recovered with little complications. The latter story just doesnt travel very far, eventhough I'm sure this happens everyday.
If you listened to your doc or LLMD and took six months of antibiotics and were cured, you probably wouldnt feel the need to go online and spread this story or shout it from the rooftops or start a gofundme page because you simply healed like you expected to.
This isnt to downplay those that have a harder treatment, I am one of them, but I'm just trying to get a realistic prognosis based on the majority of cases and find the real truth of longterm treatment success vs failure.
Another reason Lyme looks incurable by looking online is the fact that people who do get better dont continue to scour the internet for answers and continue to post on online Lyme sites. They go back to living their lives and try to forget all about Lyme. Lets face it, although some sites are helpful, Lyme can become a very confusing and very frustrating disease, and there is so much contradicting information and unhelpful suggestions that dont apply to everyone. If we ever found a way to get healthy again I know most of us would want to leave that world of confusion and frustration behind, and never look back, this is just human nature. If someone is no longer sick and outraged they will probably stop posting to their personal Lyme blog and take up other causes in their life, especially if they were sick enough to be unemployed and can then return to work.
There is so much confusion with this disease, and so many are affected differently I think many of the people who post online a lot and then find a way to get better dont fully understand how they got better and know that will be everyones first question in the online community, so they shrug their shoulders, consider themselves lucky and move on. They know from being on sites like this, that people are very desperate and as soon as they report that they have healed there will be enormous pressure on them to reveal every little detail of their treatment. What if they steer people wrong? What if their approach doesnt work for others or even makes them worse? Most people dont want to deal with that kind of pressure. Others hear horror stories of relapse years later, and even if they are cured they dont want to tell anyone until they are 100% sure they are healed beyond any doubt, so they wait it out, and eventually posting an update just isnt a priority anymore.
You will see A LOT of posts of people who say they are 80-95% better, and again because there is so much uncertainty and so many diseases that Lyme can mimick, they may indeed be healed and just not realize it, and not to push the post treatment syndrome lie, but some symptoms do linger after successful treatment and some may never heal that last 5% which may not be Lyme at all, just slow recovery from the after effects, and some damage may indeed be permanent, but if they are TRULY 90-95% healed as they claim, this is definitely a success story and definitely counts as remission.
Also I think the fact that online there seems to be so many cases of people trying a lot of different and alternative treatments creates the impression that Lyme is impossible to beat, why else would people resort to so many alternative therapies? We tend to 'outsource' our experiences and assume that if standard treatment didnt work for someone else, then it cant work for us either, so we should just skip on down to the alternative and 'holistic' treatments like everyone else seems to be doing. And dont get me wrong here, if i had an extra 50-100k laying around, I too would be on the first plane to Germany trying the expensive alternatives to try to get better quickly. What do you have to lose besides money? Its also important to point out that today mainstream medicine considers longterm antibiotics to be an alternative treatment as well. So this blurs the line between what is really conventional and what is really alternative.
I dont want to knock anyones approach. Whatever gets you to health, more power to you. I am just saying that in the bigger picture most people pursue a middle of the road, scientific medically based approach that uses western medicine. As many flaws as it has, most people who have faced tick diseases over the years have followed this approach, because for most people this is all they ever knew. Especially before the internet. Before the waters got muddied by the CDC and IDSA with their overly restrictive guidelines, doctors across the country treated the disease like they would any other. If symptoms persisted, they continued to treat with the only known treatment available, antibiotics, whether it took 4 weeks, 4 months or 4 years, if symptoms persist you keep treating. This is just a common sense approach. I have no way to quantify this, but I would bet that in the 35 year history since chronic Lyme was defined, I would wager to bet that more people have reached remission from chronic Lyme using antibiotics than any other method, because for most of this time thats all we had.
Most of the people who have gotten chronic lyme probably never took a single tincture or even know who buhner or cowden are. But looking online you get the impression that EVERYONE who has Lyme is making herbal tinctures in their basement and taking coffee enemas every night and eating nothing but bone broth. Not saying these things are of no benefit, but in reality, overall this is a minority of chronic Lyme patients who treat this way in the grand scheme of things. These are just a few examples of how the real overall picture of chronic Lyme treatment can be skewed when you look on the internet, and this helps to also explain how success and failure of chronic Lyme treatment can also be skewed.
The average person just listens to their docs and takes a mostly conventional approach. If that doesnt work they try another doc, or another LLMD. Many, many people have faced this disease over the years and most dont go into the world of Rife, Biophotons, Bee venom therapy, Colloidial silver, Iv Peroxide, Iv vitamin C, Iv Ozone or even more common alternative treatments like herbs simply because even with the internet, most people arent aware of them. Before we had the internet many people had chronic Lyme and many of them healed without any of these modalities. And this is not to say that some people havent reached remission using these methods, because some have, but I am focusing on the overall big picture and the true majority through the known history of this disease. Again when it comes to herbs most of the people you read about who have claimed to have reached remission online, including on this site, claim to have done so using herbs. However I personally dont believe that most of the people who have reached remission overall in the history of chronic Lyme have done so using herbs, but by using antibiotics, simply because this has traditonally been the more often used more mainstream approach. The internet is often a snapshot and doesnt tell us the whole story.
I think overall, mental approach is very important. The people who I've talked to in real life who seem to have the most success overcoming chronic Lyme are very matter of fact and straight-forward about their treatment. I personally do not think this is a coincidence. They seem to have had a very simplified approach to treatment. They may have looked into and treated a coinfection or two, but thats as far as they took it. They may have a limited understanding of herxing but they didnt obsess over it beyond recognizing that treatment may be painful and unpleasant before it got better. They took probiotics to protect their gut and kept on treating. Most of the successful people I have heard from never looked too deeply into yeast or candida, or hardcore detoxing, or loads of supplements, or mold, or parasites or chelation, or overly restrictive diets or heavy metals or MTHFR, or reactivated viruses and if you bring such things up they look at you puzzled and say they dont know. They treated and followed common sense approaches to their health like a well balanced simple diet and excerised when they were well enough to do so.
This disease can become so overly complex that at certain point ignorance really is bliss, simply because a great deal of the information available right now simply isnt good information for most people. The more you 'know' can really hurt you with this disease. We think we are better off by having the intenet and having all this 'information' at our figertips, but sometimes this can cause more harm than good and lead to a lot of unnecessary confusion. I wish I could unlearn 90% of what I have 'learned' about Lyme and just have taken a simple steady approach from the beginning, because at a certain point if you learn about this disease based on all the things that COULD go wrong, it tends to become a self fulfilling prophecy.
Im not trying to disrespect or belittle anyone or their personal approach to getting healthy again, because at the end of the day thats all any of us want, but I say all this to try to put the overall real world of chronic Lyme treatment into some overall perspective and point out that the real picture of Chronic Lyme seems to be very different from the picture that is created online for many different reasons. Chronic Lyme predates the internet and Chronic Lyme treatment isnt defined by what you see on the internet.
I havent healed, but judging from most of the people who have the idea seems to be to keep it simple as possible and be persistent. Lyme can take a long time to treat, so dont go looking for other explanations just because you've plateaued. Keep treating and have faith you are on the right track.
So is remission from Chronic Lyme possible? I think it certainly is. If you dont over complicate the disease and add in so many variables that treatment becomes virtually impossible, it can be done. If you have realistic and measurable treatment goals, I believe in most cases they can be reached. In fact I think most of the people who have ever had Chronic Lyme in the history of this disease have reached remission, and most of those people have done so using old fashioned relatively simple antibiotics and little else.