Looking for peer reviewed replicated studies for Lyme

Hi Mom of 2, first of all, I'm so very sorry that you have had this experience. Secondly, I actually DO understand your need for more information. The problem? Those studies don't exist, because they don't get funded. What gets funded then?? Studies that prove only the CDC's and IDSA's side. Why? That's something that doesn't have a good answer - yet.

I'd LOVE to see peer reviewed clinical studies done on each and every treatment - but they don't exist. Particularly for alternative treatments for Lyme and co. I just saw a study today done saying that HBOT is NOT a recognized treatment for Lyme, yet may have some benefit. Not that people have healed using it, only that it "may have some benefit". That's not what we need, yet that's all we have.

You won't find any scientific documentation for the difference between a herx and a flare - the IDSA and CDC isn't interested in funding studies on these differences, so we rely on patient experience, and "citizen scientists" to come up with the data. We are left with no other resources, so we 'make due'.

My own experience highlights this. Back in 2007, I started abx treatment for these infections. The LLMD deemed I likely had every single tick-borne infection out there, due to the number and severity of the symptoms I had. Why that way? Because I couldn't produce a CDC positive Western Blot.

The abx treatment was NOT helpful for me, but after having these infections for literally 40 years, it wasn't surprising that I didn't do well, knowing what I know now. I had zero experience with detoxing and supporting my body function, so when I started herxing, it just never ended. Why wasn't I detoxing and supporting my body, because no one knew to do that at that time. So, my treatment failed - big time. I was a LOT worse by the time I finally stopped treatment - against the doctors wishes. He wanted me to continue, yet I knew if I did, I wouldn't survive it. I was completely bed bound, severe physical symptoms, late stage dementia symptoms and more.

I did my research, and I did a LOT. By 2010, I came up with something 'revolutionary' in some ways - I was going to treat solely with herbs. There was only one herbal protocol that made any sense to try that I could find online (Buhner's was not online at the time, neither was Cowden's), so I took it to the Master Herbalist I finally found and she agreed to do a bunch of reading on these infections (directed by me so that they were 'trustworthy' sites) - then she read through what I had asked and made some changes to the herbal protocol and we started in. Neither of us knew what we were doing, but with my own research and hers - I healed a 40 year old set of infections in only 2 years. I had healed and was living life - until my adrenals crashed (due to some heavy stress that lasted over a year) and that's when I got reinfected.

I share this not to 'toot my own horn' but to hopefully help people to understand just how far behind we are, and what we struggle with. We have a serious lack of studies for better testing, a serious lack of funded treatment studies, and a serious lack of help AND acknowledgement from the gov't. As a matter of fact, if someone watches both sides for long enough, it's pretty obvious that the gov't/IDSA is working to show that we don't exist.

Even your case would be poo-pooed for symptoms to suddenly return by the IDSA and CDC studies.

I think you are wise to question everything though - how else do we find the truth when it's hidden (well sort of)? I refuse to jump on band wagons too - and that's wise. That's protecting what health we have left.

I did want to comment on your thoughts about Post Treatment Lyme Disease Syndrome though, because according to the CDC and IDSA, PTLD has NOTHING to do with an active infection. And this is where I differ with them. It has EVERYTHING to do with an active infection - and this is NOT uncommon to many infections.

When someone has bronchitis, and it's not cleared up within the time frame of the first round of abx, I know for a fact (long time bronchitis sufferer here) that there are no arguments, more abx are given again and again until the infection is gone - not until symptoms settle down. If the person doesn't respond to the abx well enough, it's time for a hospital stay so that they have control over everything to be sure enough abx are given - and they go to stronger abx as well. With Lyme - the person gets one round of short term (14 days) of medicine and that's it - no matter what else happens.

And, let's not forget that they have also changed the rules. There was a conference called the 'Dearborn conference' (www.ohioactionlyme.org/?p=7) where they changed the rules suddenly.

Okay, I can ramble on and on about this stuff. I've been involved with Lyme during much of it and have been appalled and disgusted at how this has been handled. The slight of hand to change research studies and to discredit anything that doesn't match up with the IDSA's thoughts on treatment and recognition of these infections has been alarming to be honest.

Oh, and I sure don't want you to think or feel like this was an attack directed at you. I promise it is NOT. I just was hoping to share things with you to show you that we are not 'playing on even ground'. They have the power to stop whatever they wish, and we are left to find what works since we are being ignored.

And, this is not the first time this has happened. Take a look at how AIDs was first treated. Many of those that were in the forefront of the AIDS movement have said that Lyme is going through the very same thing. The question is why?

The only people who are interested in having the studies done for chronic Lyme are the ones that are ill with it - and most of the time our money is all going to pay for treatments and trying to live on reduced or no income.

It's truly a quandary!! We can't get the funding needed, so we can find effective testing and effective treatments for a disease that the CDC and IDSA refuse to acknowledge. Yet the patients are very convinced - and have evidence for - the reality of chronic Lyme. As I said, my own experience shows that chronic Lyme is a very real entity, yet the CDC and IDSA would have people believe otherwise. But it's hard to deny when Lyme treatments actually heal those with the symptoms (and testing) to prove that we did have chronic Lyme and did heal from it using Lyme treatments.

I too wish answers to these questions and issues were easier!!! But we still have one heck of a fight ahead of us to even prove that chronic Lyme is a REAL disease, not to mention the fight for treatments.

I don't feel chronic Lyme will a have a place in the near future. It's too easy to place the patients into recognized safe buckets (Chronic Fatigue Syndrome or Fibromyalgia). From what I have been reading, I will most likely be place in one of those safe buckets.

MAF249 said...




Yes!! this is what we need. We need more concrete answers instead of stabs in the dark! Luckly some bills just got passed through the house and the senate to give a huge boost to all types of lyme research. I definitely agree with all the concerns that you have as far as what these Herbs are really doing. Are people actually Herxing at all? or is it a reaction to bombardment of herbs that the body isnt used to? or is it a flare up?

Too many unanswered questions.

(end of daily rant)

Rant away! It really helps the mind.

You are correct. There is a overwhelming amount of unanswered questions.

Traveler said...


I can only answer in terms of my own - or others - experiences with these things. It's hard to deny how detoxing alone helped me recover from my worst symptoms - but I was far from being able to even leave the house for more than 2 hours, even when someone else was driving. Driving was out for me because of seizures at that time. Herbal treatments healed me once, and I'm doing it again. I've had set backs, but many do when treating any chronic health issue, so I'm not giving in. I will not live the rest of my life like this. (LOL)

So, I read carefully, educated myself wholly, and try things carefully. I stop treatments any time things go in an unexpected manner. That's the best I feel we can do, as we are in uncharted territory, but I refuse to lay around and wait for a medical community that has 'brushed' me under the rug time and time again. I climbed out of that 'bucket' from a diagnosis of Fibro, CFS, and EBV and refuse to accept that this is what my life will be like - why? Because I really did heal after treating these infections in a very unorthodox manner - according to not only everyone on the Lyme forums, many doctors and LLMD's and the CDC and IDSA.

Unfortunately, what we need and what we have has a VERY large gap in between them - and this is where we sit.

yes I am now starting some herbs because I m tired of feeling this way. But I do think that one day there will be a cure for this.

julymorning said...
But then the bottom line is, what are you going to do to get better?

We can criticize the treatment methods until the cows come home, but in the end we will be stuck with a lot of illness, organ damage, and nothing or no one to turn to, to get better.

Then we end up like those of us handed a Fibromyalgia "Syndrome" diagnosis and having big pharma come out every once in a while with a new drug to throw at a symptom or two, with never getting to the bottom of healing the cause of the symptoms.

I wasted 31 years doing that, and am at least becoming pro-active in my own health care.

Not everyone can see LLMD's anyway.

The bottom line is relief of symptoms. It really doesn't matter what bucket you're labeled with. We all seek the same, to feel better. If your treatment doesn't relieve your symptoms, perhaps your in the wrong bucket.

No offence, but how can one be pro-active without clinical proof. This is what I'm trying to get at. What if it is coincidental? Now that would be leading people down the wrong path.

Perhaps Lyme creates an autoimmune problem or maybe the autoimmune problem is created by long term abx.. Trading one issue for another.

Rikky1 said...
>>Perhaps Lyme creates an autoimmune problem or maybe the autoimmune problem is created by long term abx.

this is what scares the crap out of me going from the frying pan into the fire so to speak.

also the whole idea of herxing versus flare up is a bunch of nonsense to me. my symptoms are completely random and trying to differentiate them and what may be root cause is most of the time trying to separate shade of gray.

detoxing is another one. i know its spoken of almost religiously here but detoxing has never done anything to provide relief.

these are pathogens that are at least somewhat understood invading our bodies. i still find it hard to believe we aren't farther along with how to eradicate them.

the other thing i'm not quite sold on is the 'healthy' immune system. all my immune system markers are pretty much the same pre and post-infection yet i can't shake these pathogens. i think the reality here is some people have an immune system makeup that can take care of these bugs and some people don't. or some have a more evolved species of pathogens and some don't.

i think getting over plain old lyme (unless you've had it for decades) seems to be much more doable than when you get the co-infections.

another thought is around all these dang supplements i take. been taking more than a dozen for the past year and what are they doing for me? very little to nothing i would posit.

ok i'm done with my rambling ;)

Exactly!! Detoxing never changed anything for me either. I also tried the different herbal protocols that didn't help. No offence Traveler.

I am NOT offended that detoxing and herb haven't helped everyone - not everyone is the same!! Just because I needed extensive help for my body to detox, not everyone will, and not everyone will respond to the same herbs. I'm neither surprised, nor offended - only sorry that my information wasn't of help. Promise!!

With that said - just because this or that herb or detox method didn't help, it doesn't mean that others won't, but it doesn't mean you will respond to those types of things either.

I completely understand your frustrations!!! I've been 'doing battle' with these infections for the last (ugh) 10 years, as I had my very first try at treatments in 2007. I'm beyond frustrated and that's why I do what I can to help get good information out there to help those that are still searching for answers for themselves.

I've shared this before, but I know a lady(we've been friends for 11 years) that tried everything there was to try in 2007 - 2014 and nothing helped her, nothing. Until she tried Essential oils - and now she's holding her own and living her life. She's not completely healed, but is able to live her life. Symptom relief, as you said.

Traveler said...
I am NOT offended that detoxing and herb haven't helped everyone - not everyone is the same!! Just because I needed extensive help for my body to detox, not everyone will, and not everyone will respond to the same herbs. I'm neither surprised, nor offended - only sorry that my information wasn't of help. Promise!!

With that said - just because this or that herb or detox method didn't help, it doesn't mean that others won't, but it doesn't mean you will respond to those types of things either.

I completely understand your frustrations!!! I've been 'doing battle' with these infections for the last (ugh) 10 years, as I had my very first try at treatments in 2007. I'm beyond frustrated and that's why I do what I can to help get good information out there to help those that are still searching for answers for themselves.

I've shared this before, but I know a lady(we've been friends for 11 years) that tried everything there was to try in 2007 - 2014 and nothing helped her, nothing. Until she tried Essential oils - and now she's holding her own and living her life. She's not completely healed, but is able to live her life. Symptom relief, as you said.

Thank you for all your understanding. I'm so afraid of offending someone. At times it can be difficult to articulate my thoughts into words and I tend to be blunt.

I am happy to know that you have found treatment that works for you! Why treatment has to be so individualized is beyond me. It just doesn't make sense. We are all trying to kill the same bugs.

I read the new CDC criteria for Lyme. It leads me to believe they have been doing research on Lyme. We are not privy to the research results yet.

I have stopped looking to be completely healed. I don't feel that is a realistic expectation any more. I just want to live a semi-normal existence. I suppose, I just have to find my way.

It is frustrating, but today is a new day. Thank you for listing to me and your support.

I don't think the CDC or IDSA will admit to anything they haven't been able to reproduce and come up with answers of their own.

I will always be looking for answers, it's what I do

Best!!

I would nominate myself for having the most remissions and relapses with these diseases of anyone here, and over the past 2 years have been able to remember and pinpoint 5 relapses since my first getting infected in 1984. Some of my remissions lasted 3 years, some 5. The last one I was about 95% full functioning but only with the help of pain pills. My last relapse involves both increasing pain and lung problems, started 13 years ago.

I was only able to get a Doctor to treat me for a Lyme co-infection for about 6 months in 2015 with mono abx's, which had some effect on it after some terribly herxing, but not long lasting. I'm trying herbs now.
Obviously I have never had complete or proper treatment, but in time my body, my own immune system, became strong enough to bring me back up.

I have never had a root canal, but I've had wisdom teeth pulled. However when looking back and really thinking about my relapse time line, it has always followed either a surgery or major life stress that snowballed. One relapse, I am sure is a new infection-first being Lyme, the second 8 years later, Rocky Mountain Spotted Fever while living on a different property than the first.