I have Lyme. I’d like to not have it anymore. I also just want cake.
Around late September, after a visit to a dear friend who was undergoing Lyme treatment at a clinic with a very different protocol than mine, I got to thinking about the various treatment options out there for patients to choose from. I was reflecting on my own experiences and how confusing everything was when I first began. I remember many saying “Do this!” or “Don’t do THAT!” and it was extremely overwhelming. For a while it left me lacking a lot of confidence in any of my choices. I know this is not just my own experience, so I began to really think about what are ya’ll having success with out there. What was working for you. What was getting people with this horrible disease better!
I’m NOT a person who will tell anyone how to manage their own medical care. That is such a personal decision… such a personal choice. While I appreciated intentions, there have been several comments that I’ve received that would have been better left unsaid. And I suppose I may have brought many on myself as I’ve put myself and my illness out there for the world to see. But regardless, I wanted to find a way to present people with JUST data. Or at least try to. And you guys are intelligent, I read about how many of you just have these gut feelings about your bodies or just have this wonderful intuition that guides you and helps you decide what is right for you, most of the time. It was the same way with me. When I first became sick… when life just exploded overnight for me… I felt from the very beginning that I was “under attack”. I felt it. I can’t describe how, but I did. After a few months it was almost as if my thoughts were directed to the idea of Lyme disease. I had strong impressions about it, even. I knew I had Lyme before I was diagnosed. After a few bumpy physician choices, I felt lead to my current doctor. Can’t explain that either. These things certainly did not clear up my every question or concern or fear, though. Perhaps many of you will know what I mean. SO, I thought, back in September, that if I could provide data to help you with the rest, well, gee, that would be swell! So, I got as scientific as I’ll probably ever get, and I made a survey. Then, I posted it to several places on the internet Lyme patients gather, and was all like,
Or guy… I’m sure the “Gosling Effect” didn’t work so well on the dudes, whatever.
I let the survey run for about five weeks. My terms were as follows:
Now, some disclaimers. Obviously, I had no way of controlling who took the survey. It is possible people shared my survey, and I had no control over tracking where it went to. I had no way of knowing if people would be truthful. And I had no way of making sure people only took the survey once. I simply relied on the good faith of the people involved. I did receive positive feedback from places I posted my survey indicating that people wanted to take this seriously. That’s all I can promise you. So, again, obviously, we can’t deem these results absolute.
So on with it already Tara.
Time to get graphic. Heh Heh. Annnnnnd survey SAYS!
And, 50% claim they have tried a treatment approach not mentioned in this survey.
2. For those who selected either of the two “Conventional Antibiotics” options, they were asked to specify further and given two options:
Only 18.5% choose the CDC recommended course of less than 30 days of conventional antibiotics as opposed to a whopping nearly 90% choose an extended antibiotic treatment course. Obviously, there is some overlap here, suggesting a small handful were at one time given the CDC recommended treatment, which failed to eliminate their symptoms and caused them to seek a longer term care.
3. For those who selected an extended use of conventional antibiotics, they were then asked to specify further by selecting just one from a set of given options. The results are as follows in order of most popular:
*I think it’s worth mentioning at this point that the benefits of pulsing antibiotics is only recently gaining more popularity. As this survey required a high standard of recovery for at least a year, these results may not reflect this more recently growing trend.
4. Among those who selected “Conventional Antibiotics” as the method that was successful for them, they were asked to select one of the below options to state how long it took for them to achieve at least 90% wellness or above. Results as follows:
I think this is an important one. A surprisingly large number (over half!!!) of people claimed to have taken over 2 years to get better. How many do we see quit too soon? Something to think about…
5. Among those who achieved remission through Conventional Antibiotics, how many different types of antibiotics were used?
Rotation and stacking seems to be key. However, this is common knowledge among many. For example, Borrelia can alter shape and bore into different places of the body, both of which require specific antibiotics to either penetrate different forms of Borrelia, or penetrate different parts of the body.
6. Among those who selected “Other Conventional Anti-microbial Use” aside from antibiotics, it was requested they list those medications. Not surprisingly, Mepron came out on top. Here is the list as received, starting in order from most popular:
7. Among those who selected “Buhner Protocol” as the method that was successful for them, they were asked to select one of the below options to state how long it took for them to achieve at least 90% wellness or above. Results as follows:
7. Among those who selected “Byron White formulas” as the method that was successful for them, they were asked to select one of the below options to state how long it took for them to achieve at least 90% wellness or above. Results as follows:
8. Among those who selected “Marshall Protocol” as the method that was successful for them, they were asked to select one of the below options to state how long it took for them to achieve at least 90% wellness or above. Results as follows:
Only 1 participate stated this was a successful protocol for them, and it took them 8-12 months before achieving remission. No sense in making a pie chart for just one answer guys, I just won’t do it.
9. Among those who selected “Cowden Protocol” as the method that was successful for them, they were asked to select one of the below options to state how long it took for them to achieve at least 90% wellness or above. Results as follows:
10. Among those who selected “Rife Machine or Similar” as the method that was successful for them, they were asked to select one of the below options to state how long it took for them to achieve at least 90% wellness or above. Results as follows:
11. Among those who stated they achieved remission through methods not given on this survey, they were asked to list them. General responses posted below:
This question elicited the least quantifiable answers. Most, if not all, combined many of these therapies or combined them with other therapies listed above in the very first survey question. If anything, this question shows the value of combining many methods of healing to be of value and worth considering.
12. When asked if wellness was achieved through undergoing treatment at an in-house treatment center and the participant was willing to list, I received the following answers:
13. When asked which treatment method, out of all listed, did they credit with being the most influential in achieving remission (respondents were allowed to check all that apply), the following was given:
As these percentages go over 100% by a little over 20, a decent handful selected more than one option. However, coming out on top with 51.6% of the votes, some form of conventional antibiotic-based therapy appears to be most successful, according to survey respondents.
It is important to stop here and note that we all have different body chemistries, different co-morbid conditions, and come from a variety of age ranges. As I stated at the very beginning of this post, doing your own research and coming to your own personal feelings about any potential treatment option is wise. You do you, you know? Also, my survey certainly didn’t crawl to the ends of the earth. This isn’t the be-all-end-all of options listed. Obvi.
The second part of my survey addressed basic health measures one could presume to possibly alter during the course of their Lyme disease journey to wellness. I asked the following questions and received the resulting answers:
14. And finally, when asked what measures participants incorporated into their lives in order to help maintain their remission, the following answers were given:
In conclusion, I had a great time reviewing these results (making a billion pie charts, not so much) and found many of them interesting. Who best to tell us what is working out there than those in remission. Although this survey was quite general, uncontrolled, and certainly wouldn’t qualify for any peer-reviewed studies or publication standards, I think it still holds some weight. I came out learning three main things.
First, we can’t gripe about Big Pharma too much… they are getting the majority of us well. But in the same breath, the second thing this survey has obviously proven is that we have grown much as a subset of society when it comes to taking our health into our own hands, doing the research, and self-treating a large part of our disease. And third, regardless your treatment, you guys proved it takes a long time. Those of us new to this world need to know this. Thank you for spelling it out. Don’t be afraid of a multi-year battle my fellow sickies… don’t give up hope at year one, or two, or even three. Do, not!
And as a side note, I also found it very interesting (maybe you did to?) that a lot of you are maintaining your remission by much smaller doses of continued anti-microbial therapy. Something that, unfortunately, could give weight to the theory that late-stage Lyme is life-long, whether symptomatic or not
Finally, a big fat shout-out to any who took the time to participate. Why? Because one, surveys are a pain in the we-all-know-where…
But secondly, because it shows there is a group of you who stick around… who stay to help the rest of us… who put yourselves in the places I posted this survey in spite of them being full of the still-sick whiners that we are. It means a lot to many of us.
Internet high fives to you!!!
Okay, I’m going to go dream of pie now. Laters,