Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

Success Rates of Various Lyme Treatment Options – a Personal Study

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, fe8fb04f9d0db8c2bff41c799c5e8a1ea0829086952057bf972ae7f2af8134ef

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:

  • You had to have a diagnosis of Lyme disease, preferably chronic.
  • You had to have achieved at least 90% wellness.
  • You had to have maintained at least 90% wellness for over one year.

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!steveharvey4

  1. When asked “Which treatment options have you personally tried upon receiving a diagnosis of Lyme disease”, the following was reported (participants were asked to check all that applied). Keep in mind this is a graph of just methods tried and not success rates:

1

  • 66.7% tried Conventional Antibiotics & Herbals/Holistic therapies combined
  • 51.5% tried Conventional Antibiotics
  • 45.5% tried an unspecified Herbal protocol
  • 43.9% tried other Pharmaceutical antimicrobials such as anti-malarials, anti-protozoals, or anti-parasitics.
  • 24.2% tried the Buhner protocol
  • 21.2% tried the Cowden protocol
  • 21% tried Rife machines or similar
  • 16.7% tried the Byron White Formulas
  • 3% tried the Marshal protocol
  • 1.5% tried the Zhang protocol

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:

2

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:

3

  • 62.7% – Oral antibiotics, daily use
  • 11.8% – Oral antibiotics, pulsed dosing
  • 11.8% – Oral & Intravenous antibiotics, pulsed dosing
  • 9.8% – Oral & Intravenous antibiotics, daily use
  • 3.9% – Intravenous antibiotics, daily use
  • 0% – Intravenous antibiotics, pulsed dosing

*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:

4

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?

5

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:

  • Mepron
  • Malarone
  • Diflucan
  • Alinia
  • Itraconazole
  • Non-specific Anti-malarial

     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:

6

     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:

7

     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:

8

     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:

9

     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:

  • Diet changes (ranging from whole, pure foods to Paleo to elimination diets involving sugar, gluten, and food sensitivities) – 3 responders
  • Essential oils – 2 responders
  • Cannabis, CBD, or THC oil – 2 responders
  • Ozone therapy – 2 responders
  • Chinese herbs, both anti-microbial and supportive – 2 responders
  • Exercise, yoga – 2 responders
  • Hyperberic Oxygen Therapy
  • Dr. Jernigan’s Hansa Protocol
  • Acupuncture
  • Hypothermia therapy
  • Salt/Vit C protocol
  • Detox such as coffee enemas and dry skin brushing
  • IV vitamin C
  • Electrostimulation
  • Native American herbs
  • ASEA Redox Supplements
  • Bioresonance
  • Chelation
  • Adequate sleep
  • Infrared sauna
  • Homeopathy – constitutional
  • Biomagnetic pair therapy
  • Biomat
  • Parasite cleansing
  • Restore Vital Plan (modeled after the Buhner Protocol)
  • and one stated that treating their pyruloria (a genetically determined chemical imbalance involving an abnormality in hemoglobin synthesis) was crucial.

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:

  • St. George Klinik in Germany – 4 responders
  • Amitabha Medical Center in Santa Rosa, CA – 1 responder
  • One responded with a unknown treatment center in Canada that is now closed.

     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:

10

  • Conventional antibiotics, extended use – 29.7%
  • Conventional antibiotics & herbal/holistic therapies combined – 21.9%
  • Herbals, unspecified – 17.2%
  • Other Pharmaceuticals (non antibiotic) such as anti-malarials, anti-parasitics, anti-fungals – 15.60%
  • Buhner Protocol – 12.5%
  • Rife Machine or similar – 9.4%
  • Cowden Protocol – 9.4%
  • Byron White Formulas – 4.7%
  • Marshall Protocol – 1%
  • Bee Venom Therapy – 0%
  • Zhang Protocol – 0%
  • And Others not mentioned – 43.8%

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:

1112131415

     14. And finally, when asked what measures participants incorporated into their lives in order to help maintain their remission, the following answers were given:

16

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…family-feud

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,

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65 comments on “Success Rates of Various Lyme Treatment Options – a Personal Study

  1. Brad
    April 10, 2017

    Did you calculate the “cure rate” for the various treatments? Did I miss it? What % of people who used each treatment were “cured” from that treatment?

    Like

    • tarathackeray
      April 13, 2017

      Brad, I did not because most who responded as saying they felt cured attributed it to more than one treatment modality, which complicated calculating a cure rate, as you can imagine.

      Like

  2. Jaime Smith
    April 6, 2017

    3rd year of treatment and I’ve been losing hope
    But after reading and analyzing your pie charts it now gives me so much health it may take more than 3 years to achieve remission! I believe I am almost there but my babesia showed it’s ugliness once again. So now I’m being treated with intense antimalarials, antibiotics, some herbal. So thank you so much for giving the hope I needed at this time. I’m not religious really more spiritiual Christian. Pray. Before I read this article I was praying to God. Thank you is not enough!!!

    Liked by 1 person

    • tarathackeray
      April 7, 2017

      I’m so glad Jaime! Please keep treating! You will get there 💚

      Like

  3. Anonymous
    April 5, 2017

    Love the humor! Great read, awesome information! Thanks!

    Like

  4. Laura
    March 8, 2017

    Thanks so much, it is just great to hear that at least remission is possible.

    Like

  5. sarah2980
    December 21, 2016

    Wow this is great stuff! I am on my way to recovery and am 1.5 years out since the big downfall. It’s super uplifting to see the positive feedback and ability to gain full recovery. How many total individuals responded to the survey?? It might been in there and I missed this. Lol. Anyways, I realty appreciate your hard work because it is very encouraging to know that it does take others a long time (over a year) to heal from this horrible and controversial disease . 💜💜 Thank you.

    Liked by 1 person

    • tarathackeray
      December 21, 2016

      You’re welcome! I found it encouraging as well. Around 100 participated in the study. Best to you and your recovery!

      Like

  6. Ronny
    October 11, 2016

    Question nr 13 – I wonder what hides under the answer Other?
    I have borrelia myself since, I believe, a few years at least. I am a kinesiology therapit and I treat myself with kinesiology every day, and I don’t feel any clear borrelia symptoms. I wonder if it’s because of the my self treatments? Maybe the body, if helped and optimized in its normal functions, can fight borrelia better?

    Like

    • Laura
      March 8, 2017

      Hi Ronny,
      Would be interesting to know what kind of Kinesiology or exercises you are doing.
      Is it just to stabilize the body or are you using tapping es well?

      Thanks Laura

      Like

  7. Sharon
    July 21, 2016

    Many thanks for your time and effort an interesting read. Personally it has reminded me that there is no one protocol that is right or wrong, but what works for the individual and to stick with it for at least two years

    Liked by 1 person

  8. Anna
    June 7, 2016

    How many people completed your survey?

    Like

  9. goldenmadrona
    April 11, 2016

    Also, I’m just recently disembarking from the whole “I-couldn’t-posibly-have-Lyme-Disease” train of denial, and still orienting myself. I’ve been *mostly* in remission doing Kundalini Yoga and Meditation for the past three years, but whenever I stop my practice, I get sick. I think this is why: http://www.businessinsider.com/vagus-nerve-stimulation-2015-6

    Like

    • tarathackeray
      April 11, 2016

      The vagas nerve is so influential in so much of our functioning. Keep doing what works for you!

      Like

      • GMD
        April 11, 2016

        I had shingles involving the vagas nerve. Sharp, lightling-like severe pains crossed the midline, also going from front to back (ventral to dorsal). The lightning-like pains settled down to a dull abdominal pain, where my gall bladder had been, like I was supposed to, but did not have, before my gall bladder was taken out. I am so glad that gall bladder was gone. The ER doc said if I did have a gall bladder at the time, I would already be in surgery because of the classic pains. Can’t trust classic pains! I was given an anti-viral medication. it went away within a week, and took a bit longer to heal all the way. I was on Lyme treatment. I would not let myself scratch at all, ever. My GI doc said it was the least severe case of shingles he had ever seen. I, offhandedly, asked him what would have happened if the case had been much worse. His, offhanded comment. “Oh, you’d be dead.” Cranial nerve X, that wonders throughout the body even into limbs, controls breathing and a lot of other things. I knew from college anatomy and physiology it was an important nerve. Now I know from experience. Of course Lyme played a role, suppressing the immune system.. Just FYI for interest. They say the measles virus causes shingles. Antibiotics do not treat viruses. Without the current Lyme treatment, I think my immune system would have been much weaker, and I might not have fared so well. Oh yeah,(so sad) I had all my vaccines.

        Like

  10. goldenmadrona
    April 11, 2016

    Word of note, I live in BC, Canada.. no treating LLDs in my area currently, although I keep looking. A few good LLNDs though. Our “Complex Chronic Disease” clinic in Vancouver, which was opened up 2-3 years ago in order to fill the gap in Lyme Treatment, just backed all the way out of treating Lyme. 😦 !

    Gabe

    Like

    • tarathackeray
      April 11, 2016

      So unfortunate! I wish you all the best in your healing journey! Hang in there 🙂

      Like

  11. goldenmadrona
    April 11, 2016

    Thanks for the hard work involved here.. You’re way ahead, and doing the research that the docs and academics should be doing! This is so helpful.

    I have had a negative ELISA and Igenix Western Blot, but I definitely had an EM rash 19 years ago. I dismissed it as a spider bite, with worsening symptoms coming on, including endometriosis and eventually, Myasthenia Gravis like symptoms with severe muscle weakness episodes after getting sick or taking medications like birth control meds, vaccines, and unfortunately, antibiotics.

    So I have no LLD and I am doubtful that my system can handle taking abx.. I am at least working part time/casual hours now, and don’t want to lose the ground I’ve gained. I take Mestinon to help with the weakness at least, and am doing homeopathics, yoga and vitamin therapy. I’m hoping to see a LLND soon, who offers LDI (Low Dose Immune Therapy). This is a fairly new kid on the block, but has anyone in your sample done this therapy? It is getting quite positive results apparently, in folks who can’t seem to tolerate antibiotics very well, but some mixed results as far as I can tell and have heard from local Lyme patients. I am planning to level up my treatment into LDI soon, but want to amp up my physical fitness level first, so that if my system has to take a hit, at least I’ll have more vitality to get me through it.

    Have you considered teaming up with some research docs with your data, to see if they might like to collaborate or expand on this awesome work you’ve done?

    Gabe

    Like

    • Jennie Thomas
      January 12, 2017

      Gabe I have been doing LDI for the past 6 months and found it to work very well in addition to antibiotics for treating my lyme disease. Good luck

      Like

  12. Anonymous
    April 10, 2016

    Thank you for taking your time to do this, and thanks to all who did the survey

    Like

  13. jacquelynnefaith
    April 8, 2016

    This was pretty amazing. The only other thing I would like to know about each participant is how long they have had chronic lyme-estimated-before seeking the treatment that they found remission through. It seems that the length of treatment needed to be successful would vary depending on onset/length of time experiencing chronic symptoms. I have had lyme for ten years. No remission, but reduction in intensity of symptoms and increase in functionality due to dietary change and supplements as specified by holistic doctor. Five years ago, I tried antibiotic and saw no ongoing improvement and worsened in some areas like neuropathy and cognitive issues. About to try Buhner though 🙂

    Like

    • jacquelynnefaith
      April 8, 2016

      Oh and to clarify-I would have tried an ongoing protocol sooner, but only got positive tithers for the first time RECENTLY from IgeneX. I was misdiagnosed up until now, with my previous antibiotic treatment based on a hunch and then some confusion when it didn’t work.

      Like

    • tarathackeray
      April 8, 2016

      Good point. Since so many never recall a tick bite I suppose that would be really hard to answer as symptoms aren’t always indicative of the beginning. I am glad you have found something that is helping! Best of luck to you!

      Like

      • GMD
        April 9, 2016

        Very difficult to take a survey, because answers can overlap. Maybe a 3-D graph would be better, but difficult to do on a 2-D page. Not criticizing here. For me a question like, “Did you recover on IV ABX?” Not an easy question. Yes, I recovered for 5-7 years. Then with treatment jerked, I relapsed. Would I have done better on open-ended treatment? In my mind a definite yes, yes, yes. But now I have learned about alternatives like IV ozone, IV vit C. Will they work? I am not a millionaire, or billionaire like our wonderful awareness making people like Yolanda Foster, John Caldwell, or others, so i may never know Lyme took my means to pay, my job. How can you answer questions like that in a survey? I am thankful for those who are truly trying to bring awareness, like you Tara. On top of it very sick people have to fight a political battle. This is a great survey and presentation. Only time and people who do surveys and really care about sick people will be able to refine data. If there was not a start there would be no finish. Again, a great survey.

        Like

      • tarathackeray
        April 9, 2016

        Thank you.

        Like

    • Roxie
      November 15, 2016

      Have you started Buhner, and how is it going?

      Like

      • jacquelynnefaith
        December 24, 2016

        I haven’t! I’ve heard some mixed reviews about efficacy and have just been left confused. I’m doing a mostly raw and organic-when-I-Eat-meat, supplements, and chemical/stressor reduction in addition to cannabis oil.

        Like

  14. Sarah Healy
    April 5, 2016

    Thanks for this. I found it very informative!

    Like

  15. Topsy
    February 7, 2016

    I find your way of presenting findings confusing. A circle = 360degrees. But for the first answer there are 5 options with approximately 50% . It just doesn’t make sense. If using percentages the total outcome should be 100. Otherwise you could say 55 respondents maybe? I’m sorry to be picky but I find it confusing and considering the amount of work that has undoubtedly gone into your research I find it a shame.

    Like

    • tarathackeray
      February 7, 2016

      The first question asked responders to choose more than one answer, so you’re right it probably shouldn’t have been presented in a pie chart but I wanted to keep things consistent.

      I did my best!

      Like

    • Sonny
      April 9, 2016

      What’s ‘shameful’ is not taking one’s own time to showcase ‘the right way’ and then having the audacity to criticize another’s results.

      I appreciate that this individual took the time to provide this info dump, because as of right now, this is the primary R&D addressing Lyme & Cos. To the author thank you for your efforts…

      Liked by 1 person

  16. Mary Beth Thakar
    February 4, 2016

    Tara, this is just great! and it would seem to me that an ongoing survey would be even better. So that people could update their experience, as their “experiment” changes. I would like to attempt to do such an ongoing survey.

    Like

  17. Jaime Smith
    February 4, 2016

    Great great article!! Validated many feelings for me one largly being how long it takes to get better or at least achieve some type of remission!

    Thanks so much for your time and EFFORT!!!
    Jaime

    Liked by 2 people

  18. Pingback: LYME SUCKS!! In Loving Memory of Paige Adams, FNP, B-C - Stop The Thyroid Madness

  19. Mats Lindström
    January 31, 2016

    Hey, thanks for the very fine compilation of various methods of treatment that could work 🙂

    Exactly how many were there? Nearly 100 I read above. It looks like both Cowden and Buhners protocol seems effective with a relatively short treatment, with particular advantage for Cowden.

    Regards
    Mats Lindström from Sweden

    Liked by 1 person

    • tarathackeray
      January 31, 2016

      That is true, Mats. However each of those protocols had very few responders… Less than 15 I believe, and it is likely that due to the high amount of responders that also stated they tried antibiotics too, it is impossible to determine to what level previous protocol attempts contributed to their success. Not being a scientist… This is the best I could do. 🙂

      Liked by 1 person

  20. J.L. Menzel
    January 27, 2016

    Go into a bee venom therapy group and survey them. Most people don’t know about BVT being an option or they think antibiotics are the most trusted choice so they opt for that first. It’s usually when Abx fails that people make their way to BVT and get great results. It’s the only therapy that had made me herx ever. I’m only a couple months in, but I know and feel it working. How many in your 100 survey have actually TRIED BVT? My guess is 0%

    Like

  21. Dian
    January 12, 2016

    Thank you for doing the survey. Saying you have to be 90% cured and in remission seems to me to be only one’s own opinion. I’m quite sure I’ve had the disease about 30 years and only got bad enough to find answers about 3 years ago. With no one taking on the much needed information this kind of survey reveals it seems to me this is a good start at getting something like that done. because I’m so much better than I was even a year ago, I still am very limited on living a normal life that I can’t say I’m 90% better. I continue to try to do more but find that when I try to do more, I suffer a set-back. I have accepted that I may be as well as I’m ever going to get and just accept that fact. I too felt like I got ‘old’ overnight so glad I was able to enjoy many things in life in the past that I can not do now and may well never be able to do again. Thank you, again, for doing the study. Will look forward to more in the future.

    Like

  22. Craig
    January 12, 2016

    Thanks for caring enough to do this and for sharing the information.

    Liked by 1 person

  23. David Ziemke
    January 12, 2016

    Thank you Tara!!! I will keep on keeping on, with a little more hope than I did yesterday. And with a more open mind. Because of your efforts. THANK YOU!

    Liked by 1 person

  24. Jenn
    January 12, 2016

    What was the sample size?

    Liked by 1 person

  25. Sue
    January 5, 2016

    It would be interesting to see this survey done with a two or more year remission. I relapsed after being off antibiotics and antimicrobials for one year and this seems to be common. I even stayed on a small amount of antimicrobials for that year while I was off antibiotics. There is new evidence that antibiotics encourage the cyst form of Lyme to develop. When antibiotics are stopped, the Lyme begins to come out of cyst and symptoms begin to develop again. This can take up to a year to occur. Those in my area who have been able to get beyond the one year mark have been using the rife machine, without any germ killers (after trying most of the treatments that you list, over many years time). See Rosner’s book “When Antibiotics Fail”

    Like

    • tarathackeray
      January 5, 2016

      Sue, thanks for the comment. Did you use biofilm busters along with your abx? This seems to help many stay in remission as well.

      Like

  26. GMD
    November 11, 2015

    I am very sad tonight. It is bad enough to have Lyme still attacking when you are older, when you have had effective treatment and had it jerked. Tonight I found out that a little second niece has been diagnosed with childhood arthritis about 2 years ago, and problems with her eyes. Where was childhood arthritis first diagnosed? Of course, all on this forum will chime in with “Old Lyme, Connecticut.” I tried a mild description of Lyme disease, but was quickly rebuffed. OK, I feel sorry for Mamma, Daddy, and even Grandma, possibly even Grandpa (my brother, a real stinker). But my real heartbreak is for my 5-year-old little second niece. All I can do at this point is pray for her. She is so little, could be helped, but how long, how many years will she have to suffer before, or if, she gets help. Typical closed minds. Classically, she is getting treatment, regularly from establishment medicine. Keeping Mamma very busy, and establishment medicine has a steady income, with no help that I can see, from the symptom treatment she is getting. They live in the mountains, lots of trees, lots of outdoors. Lots of their own animals, and lots of wild animals, lots, and lots of deer. So sad. If (to me a very mild if), she has Lyme, how long will it take before her siblings and maybe even Mamma and Daddy get it too. I have seen at least a dozen deer in the yard at one time. So sad.

    Like

    • tarathackeray
      November 12, 2015

      I’m so sorry to hear. I can think of a handful of people I know too who likely have Lyme but are being treated for something else. We do our best. Praying your day will brighten.

      Like

    • mibi
      April 9, 2016

      I can relate. I have a family member who is dealing with developmental issues with one of her young sons. Including what looks like lyme rage, at times. He has a speech therapist, a special ed teacher and other drs she pays ungodly amounts of money to. He had been diagnosed with lyme disease a few years prior and while she was lucky enough to have seen the bullseye rash, which led to testing and treatment, they only gave him 3 weeks of doxy and said he was cured. While I was staying with her to help her with the boys while she recovered from a surgical procedure, I noticed alot of what looked like lyme symptoms. When I suggested his issues may be stemming from the lyme or a possible co-inf that was never addressed, she flew into a rage at me. For having suggested he still had lyme and that the drs gave her wrong info regarding 3 weeks being enough. She informed me she would trust the professionals to know better than I would know. Since my experience is only living with and researching lyme and cos for 20+ yrs, I’d tend to agree that professionals would know better than I. I pointed out there were professionals who I had relied on, when finally found, that believed in more than 3 wks of doxy and to test for co-inf and suggested she look into ILADS and IgeneX, herself. She snatched her other son out of my arms, threw me out of her house, blocked me on all of her and her husbands social accts, and hasn’t spoken to me since. I cant believe that I was seen as the bad guy, in this scenario, when I was only trying to help. I still don’t understand her anger, at me, for wanting to give her info I thought would help her son and avoid alot of unnecessary suffering for him and financial burden for her. I should also mention that several years ago, while I was on LT abx treatment for my lyme, my daughter (3 at the time) woke up one morning complaining of leg pain – one of my 1st symptoms. So I immediately had her blood tested by Igenex. She was + for lyme and 3 co-inf. She was then treated with 3 mos IV abx, follwed by 3 mos of oral abx. She’s been in remission for the past 14 yrs and graduates HS, with honors, this year. So I’m greatful for the LLMDs who go outside the existing protocol of 3 wks of doxy, or my daughter and I would be dealing with the issues she and her son are going through. Or worse.

      Like

      • mibi
        April 9, 2016

        I can relate. I have a family member who is dealing with developmental issues with one of her young sons. Including what looks like lyme rage, at times. He has a speech therapist, a special ed teacher and other drs she pays ungodly amounts of money to. He had been diagnosed with lyme disease a few years prior and while she was lucky enough to have seen the bullseye rash, which led to testing and treatment, they only gave him 3 weeks of doxy and said he was cured. While I was staying with her to help her with the boys while she recovered from a surgical procedure, I noticed alot of what looked like lyme symptoms. When I suggested his issues may be stemming from the lyme or a possible co-inf that was never addressed, she flew into a rage at me. For having suggested he still had lyme and that the drs gave her wrong info regarding 3 weeks being enough. She informed me she would trust the professionals to know better than I would know. Since my experience is only living with and researching lyme and cos for 20+ yrs, I’d tend to agree that professionals would know better than I. I pointed out there were professionals who I had relied on, when finally found, that believed in more than 3 wks of doxy and to test for co-inf and suggested she look into ILADS and IgeneX, herself. She snatched her other son out of my arms, threw me out of her house, blocked me on all of her and her husbands social accts, and hasn’t spoken to me since. I cant believe that I was seen as the bad guy, in this scenario, when I was only trying to help. I still don’t understand her anger, at me, for wanting to give her info I thought would help her son and avoid alot of unnecessary suffering for him and financial burden for her. I should also mention that several years ago, while I was on LT abx treatment for my lyme, my daughter (3 at the time) woke up one morning complaining of leg pain – one of my 1st symptoms. So I immediately had her blood tested by Igenex. She was + for lyme and 3 co-inf. She was then treated with 3 mos IV abx, follwed by 3 mos of oral abx. She’s been in remission for the past 14 yrs and graduates HS, with honors, this year. So I’m greatful for the LLMDs who go outside the existing protocol of 3 wks of doxy, or my daughter and I would be dealing with the issues she and her son are going through. Or worse.

        By the way, Tara, thanks for putting this all together. That had to be exausting, but it’s very much appreciated. Good to know what options there are and more proof that long term therapy, abx or otherwise, is necessary in alot of cases. Gives people hope and shows we can’t give up too soon. Bravo.

        Like

  27. Jim
    November 11, 2015

    Great Survey! So how many people took the survey?

    Like

  28. silverlymings
    November 11, 2015

    Tara, this is awesome! Love the comprehensiveness of the data you covered.
    One question I have — and you may have said it but I totally missed it — is how many people took the survey. Can you let my Lyme-foggy self know?

    Like

  29. Skip
    November 11, 2015

    Outstanding! Always wanted to see something like this compiled. Wish I would have seen survey, would have gladly taken it. This was very helpful and hopeful. Lyme undiagnosed for 22 years. Feeling slightly better after over a year of abx and herbals. About to test for heavy metals to see if that is slowing progress. Seeing 2 years before remission was helpful today.

    Like

    • tarathackeray
      November 11, 2015

      Exactly. We hear it takes time from everyone over and over, but I think many of us start to wonder eventually if that is just some sort of placating instead of truth. It’s truth!

      Like

  30. Anonymous
    November 11, 2015

    Great study, loved your visuals. Now that I’m finally diagnosed (and yes, I knew I had Lyme 3 years before I finally got it confirmed …), I can use this info. I couldn’t do the survey because I’m only 3 months into treatment but this supports my LLMDs approach with traditional antibiotics, herbals, other supplement support and lifestyle changes (dairy, gluten/bread in general, no sugar). I’m getting ready to learn how to make bone broth,

    Like

    • tarathackeray
      November 11, 2015

      Bone broth is great! Wishing you the best as you start this new journey to recovery. -Tara

      Like

  31. Pam
    November 11, 2015

    Very interesting survey! Thanks for all the hard work in putting this information together.
    So many people begin a therapy only to stop it a few months later – not giving the therapy time to work. The body takes time to heal. I’m beginning my 10th round/month on Vital Plan’s Restore Program. I started feeling really good a few weeks ago with more energy. I’ve had 4 setbacks; 2 additional tick bites, a muscle spasm episode that set me back to my beginning symptoms and took a month to recover from and my dad passing away(also took me a month to recover). All this since starting treatment. I’m not sure what percentage I’m well because I was bitten by a tick 15 years ago, didn’t know to treat and all kinds of things went wrong for a whole decade. Then I got worse over the course of several years, then worse again last year, then debilitating neurological symptoms last year. All I care about is that I feel well enough to enjoy life now. Any healing beyond this is a bonus for me.

    Like

    • tarathackeray
      November 11, 2015

      Thanks for the comment. It’s true, so many don’t give a therapy time to work. I don’t believe there are any shortcuts for those with deep, long-standing infections. It’s a truth that’s hard to accept when you are suffering NOW though. Wishing you wellness and happiness. -Tara

      Like

    • GMD
      November 11, 2015

      You are right, it took a lot to put this study together. Some people try one “cure” then another, than another. Finally, it seems, that last cure worked. I can’t help but think when this happens, the first treatments probably contributed to the final cure. Tara is taking a pulsed approach to antibiotics. It seems to me this pulsed approach is probably better than the solid 4-5 years of IV ABX treatment I had. But maybe not. I watch eagerly to see how it all works out in the end. My thought, influenced by my situation for sure, is that doctors and dentists do not get together. When my treatment was jerked, my oral infection, which I thought was gone, came back, slowly, but has always kept gaining. LymeDisease.org is taking a survey, maybe something like Tara’s collecting data. Maybe this will eventually influence establishment medicine. We can only hope.

      Liked by 1 person

      • tarathackeray
        November 11, 2015

        Excellent point about other “cures” contributing to the one that appeared to work. Wonder that myself all of the time. I will have to look up the LymeDisease.org surgery. Thanks for letting me know!

        Like

  32. GMD
    November 11, 2015

    Great study!!!

    Like

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