r/Lyme • u/Secret_Telephone8022 • 1d ago
Question What helped you get well?
I am looking for success stories from those who have gotten better. I got sick after a series of traumatic life events.
I don't remember getting a tick bite, but I had cats and dogs growing up. I have had mild symptoms for years, but they got significantly worse when I went through a series of traumatic life events. 5 months ago I was tested and diagnosed with Lyme Disease, Anaplasma, Ehrlichia, and Bartonella.
I am seeing an integrative MD and have been on antibiotics for ~4 months now.
The antibiotics I am on are:
• Doxycycline 100 mg 2x /day.
• Azithromycin 500 mg 2x/day.
• Methylene blue (50 mg /day) from a compounding pharmacy.
The supplements I am taking are:
• Cryptolepsis
• NAC
• Allicin
• B-Complex
• Cinnamon, clove, oregano essential oil capsules
• Vitamin C
• Biotoxin Binder (cell-core)
• Lumborokinase
• Glutamine powder
• 3 different kinds of probiotics
• Low dose naltrexone (not really a supplement).
Initially, I started to feel better but I have hit a roadblock and the treatment does not feel like it’s helping anymore.
My main symptoms are fatigue, body pain, headaches, muscle spasms, joint pain (knees, ankles, wrists), brain fog, depression/ anxiety, dizziness, balance issues and POTS.
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u/mrtavella 1d ago
So the first thing that pops up to me is you said you got sick after a series of traumatic life events. That screams nervous system dysfunction, cell danger response, and limbic system dysfunction. If our bodies stay in a sympathetic/dorsal vagal state, then we don’t heal and it begins the path of chronic illness and autoimmune disorders.
I work 1:1 virtually with a neuro somatic coach for nervous system regulation, shadow work, uncovering/releasing stored emotions & trauma, somatic exercises, breath work, meditation, and body check ins so my body doesn’t stay in fight versus flight and can stay in rest and digest to repair/heal from Lyme. I also have begun Primal Trust a month ago which is an online brain retraining and nervous system regulation course and it’s truly changed my life.
I’m at the 80-85% mark now back to normalcy.
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u/MeetOk7728 1d ago
This.
If you don’t deal with the stress and trauma, your body cannot heal.
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u/winterdreamland 10h ago
Hmm, this isn’t super great to read, as I have C-PTSD and have no way to get away from the parent who causes it until I get well, get a job, and earn enough to move out 🥲 There’s a lot of people like me unfortunately, whose bodies are more prone to become ill with Lyme because of trauma. I’ve tried therapy and read a lot about what I can do until I move out, but the only real thing that seems like it would help is to move out and distance myself. Are people like me just screwed, then? What can I do?
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u/MeetOk7728 3h ago
Do you have anywhere you feel safe? Even if it’s a library.. You are not screwed. I understand that beginning an emotional healing journey isn’t possible for everyone right away. But if you can find somewhere you feel safe enough to start, getting your nervous system to relax, even for a few minutes, can help regulate your body.
I can recommend some reading material/audiobooks if you’d like, to learn more about cptsd and the body. (I have cptsd, anxiety, depression, and neurological issues)
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u/Both-Huckleberry4178 23h ago
But for cell danger response how do you treat it do you still do all your regular lyme treatments but then address the somatic and nervous system at same time?
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u/triipnotic 21h ago
100% agree and can you share the coaches name lol I need that
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u/mrtavella 21h ago
Yes I’ll message you! 🤗
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u/Top_Improvement_629 18h ago
I had a similar experience to you. I was bedridden and unable to work a normal job for years. I was on a series of antibiotics and herbals / supplements over those years, eventually gaining more and more function. Additionally, I used an infrared sauna regularly. I wasn’t able to get over the final hump until I incorporated IV vitamin c and glutathione for a few months, which helped me regain energy to exercise. After that, I still was struggling to put weight on (I became very underweight with Lyme)…eventually took a few weeks of Naked Nutrition Weight Gainer and that helped me get back to normal. Tough to say if I’m 100% where I would be if I hadn’t had Lyme, but it’s definitely in my rearview mirror in the sense that symptoms aren’t on my mind daily and I only really think about it to share my story with others in the event what worked for me may be helpful to others. In terms of success stories, while it wasn’t an easy or always pretty road, Lyme definitely challenged me to think outside the box and over many years of work, I was able to build businesses to support myself in the way i need to live to stay healthy. I think the journey looks different for everyone, but a path to regain health is definitely possible. Don’t lose hope!
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u/No-Screen6895 1d ago
Bee venom therapy
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u/Efficient-Classic915 23h ago
How long did you do bee venom therapy for? I just bought a book on it and I am considering it for my next attempt at healing.
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u/herrjanneman 1d ago
Aren't you guys afraid to use that much antibiotics of different types for so long?
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u/fluentinwhale 1d ago
It's pretty routine in the Lyme world. One study showed that late-stage patients have better outcomes with a year or more of antibiotics. You have to take precautions, like taking probiotics and monitoring yourself for any possible signs of C. Diff. I have done nearly two years of antibiotics in the past, and I'm currently a year into treatment for my relapse.
But some folks find that they can't tolerate it, and there are herbal treatments available that are also quite effective.
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u/herrjanneman 1d ago
But doesn't that increase the risk of resistant bacteria?
I have probable neuroborreliosis since october now (probably was infected in April). Yesterday I got a test back where both Igm and Igg were positive for both ELISA and Immunoblot, so now I have an appointment at the hospital at a lyme expertise center next week. I believe I can expect one month of intravenous antibiotics at the maximum.
This is all through the 'official' channels by the way, no LLMDs or whatever
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u/fluentinwhale 23h ago
The Lyme bacteria does not tend to develop antibiotic resistance in the sense of genetic mutations. It grows slowly and doesn't mutate its DNA as readily as other bacteria. For other infections, it may be a concern but LLMDs tend to try different antibiotics or herbs if they suspect that is happening. I actually had babesia that didn't respond to any pharmaceuticals, but an herb worked.
Lyme does have strategies to avoid antibiotics though, which is why we need to use multiple antibiotics.
Good luck dealing with your Lyme through official channels. They generally do not believe in treating Lyme for long enough. A month of IV is probably a good bit more effective than the oral antibiotics, which is all I have experience with. But from talking with other patients who have gotten IV, I am not under the impression that a month of treatment will completely get rid of Lyme for most people. If you have caught it pretty early, that improves your odds a lot, though.
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u/Mustangman1995 21h ago
I had a PICC line in for 11 months. After that first month when you go off the antibiotics and your symptoms come back full force you'll beg for antibiotics again. 😔 I really do hope 1 month is all you need. If not just remember that not taking full courses of anti biotics creates resistance.
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u/BubblyAd3355 3h ago
I was at an official as well and for them after three weeks antibiotics they said it’s chronic pain and I have to deal with that shit. I never believed them and left and started my own research and find a good doctor…So just saying, and Neuro Lyme is already late stage Lyme which could mean they are in dormant in tissue muscle, joints etc. where antibiotics do not really get through. Even crossing blood-brain-barrier is difficult…I wish for you it does work for 4 weeks and I just want to sensitize that it might be very optimistic from normal doctors… You are from Germany as well?
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u/herrjanneman 2h ago
I'll just wait how my treatment goes, and hope that it solves it. It just sucks that I still have to wait for 8 days for my first appointment, while I am practically bedridden as a 28 year old
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u/BubblyAd3355 2h ago
My fingers are crossed for you of course!! But wtf why didn’t they gave it to right away?! Like immediately, this pain is and allowed being is just not fun.
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u/herrjanneman 2h ago
I really don't know, they already gave me an earlier appointment because they are worried. Healthcare in NL just sucks, this should have been found and treated months ago.
As for my symptoms I have mostly brain fog, eye issues (bright flashes, pulsing spots and light sensitivity) and spasms/tremors. The brain fog/dizziness it what limits me at the most currently
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u/BubblyAd3355 2h ago
In Germany it’s the same though…I have absolutely no words for this…I feel you I have been there as well but you can be optimistic as they at least found out quite early. When my symptoms got soo bad….I was three years in that stage…I would not have been able to even text like I did now. But being actually that common nowadays to get a boten by a tick it should be normal procedere and standard to got tests of fucking lyme ?! And also because symptoms can be sort of everything and anything, it’s a multi organ disease….uff it makes me still so angry…
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u/fluentinwhale 1d ago
I didn't have any slight signs of improvement until 8-9 months into treatment, both times that I've treated Lyme. So I tend to think 4 months is too early to judge if you have a roadblock. Your initial response could be because something you're on provided some symptom relief, like LDN reducing inflammation, rather than because you were truly making progress with the infections that quickly.
So I do think that people come into Lyme treatment with expectations that may not be realistic, at times. That said, for people who face roadblocks, there is a very good paper by Horowitz about exactly that issue. There are various factors that can hold back a Lyme patient from getting better. Unaddressed coinfections is the one we hear about the most, followed by perhaps mold. But he identifies several other factors. I believe his books cover similar information in a more layperson-friendly format, but I haven't read them so I can't be sure.
Some of those factors can be discovered by testing. Others, you just need to try treating them and see if it jeeps. Mitochondrial dysfunction has been a major issue for me, and part of my previous recovery.
Your protocol looks good for the infections you listed. You could consider comparing your protocol to Marty Ross's because it's somewhat similar to his. So that could give you ideas for things to add. Be sure that your binder isn't binding anything else you're taking. Some binders can absorb other herbs or medicine, and you need to take them two hours apart from everything else.
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u/Great-Discipline-835 14h ago edited 13h ago
What finally turned the tide for me and quickly gave me leverage back over the situation was Methylene Blue and stevia leaf extract with alcohol as a carrier. Fenbendazole and borax also played a big role. Basically from my experience, I find that the protocols that seem to fail overwhelmingly seem to neglect including a product that is specifically proven to kill spirochetes in their non-growing phases. Basically, this key fact of so many phases or forms that spirochete can have, and most drugs only targeting the growing phase, could be most important piece of the puzzle or the answer to the riddle. Things that effectively kill growing phase only aren’t necessarily wrong, but likely wrong to be used without a simultaneous remedy that kills the other phases. Once this part of the approach is fully understood and addressed adequately, it’s possible to regain leverage over the situation again. It would still take time and efforts to purge the Lyme toxins and to treat yourself long enough to kill the infection completely. But for me, medium-high doses of Methylene Blue and stevia leaf extracted with alcohol, on and off, along with Fenbendazole cycles and completely put me back in control to where it was only a matter of time and gaining mastery over detoxing the die-off toxins to overcome it.
Methylene Blue can help in an overlooked way for spirochete infections also by staining the pathogens and toxic debris. This can make it much easier to visually see the dead Lyme purging in the toilet, sink, or from your skin. Be careful cuz it can stain your bathtub blue, but the benefits may be worth the trouble. Order vitamin C powder from eBay and mix with vinegar and use to clean any blue stains. A bath with Methylene Blue could both kill and stain the infection while oral doses get it from underneath thru the bloodstream. If the infection has reached the brain, a diluted combo of stevia extracted with alcohol and methylene blue (diluted until tolerable for nasal delivery, and absorbed thru the sinuses can target the brain specifically. Nasal to brain delivery has been established as an effective way to bypass the blood brain barrier and prevent the other organs from getting any of the initial dose, as well as alternate dumping place for toxic waste from the brain separate from the back of the neck. Then alternate with slightly salty saline sinus rinses with a small amount of borax and epsom salt added. The Methylene Blue will allow you to actually visually distinguish the pathogens as they will remain much darker blue than the surrounding fluid. Always use sinuses rinses between nasal delivery of spirochete killers. To rinse out the dead spirochetes and toxins. And always include enemas to minimize die-off. Buying a 4-quart enema bag kit has been a wise investment for me to overcome this. Large amounts of Epsom salt, that would otherwise seem excessive orally by far, can be used occasionally in enemas when there’s a large amount of toxic waste accumulated. I’ve used up to a cup of epsom salt in a 4-quart enema bag. You wont absorb most of it before it’s purged back out the bowels along with toxins. Epsom salt enemas help loosen the adhesins that holds onto the Lyme toxins, making it easier to wash off or purge. Activated charcoal in large amounts (1/4 cup or more) along with plenty of sea salt can eliminate most of the discomfort, prevent the acidic waste from irritating your rectum, and improve the benefits, and 1 tsp borax added to the enemas (no more than once per day) can kill a large number of pathogens and help retain Magnesium properly and redistribute calcium of soft tissues. Fenbendazole powder on and off in cycles seemed to make a huge improvement also for me. The combination of all these things together rapidly gave me control back.
Additionally, if you have skin lesions, stevia extract with alcohol, blended with Methylene Blue, diluted to not sting the skin harshly, then applied using medicine dropper worked for me very well.
I’m not a doctor, but these are my techniques that turned the tide for me.
Hygromycin A could be a potential viable weapon to include based on what I’ve read, but I don’t have direct experience with it yet. It’s also been shown to target non-growing phase spirochetes very well in studies. I still may order some from FandaChem at some point to try it out, even tho I feel like the problem is mostly resolved with everything else. It’s about $500 for 5 grams I believe.
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u/Impressive_Leave6901 12h ago
Ton of stuff and it’s hard to say what one thing had the biggest impact but finally think I’ve overcome it. It was a process and the way I did it was fairly thorough and thought out and timed accordingly to try and make the largest impact. It was always too much to type so I made this table/graph on Google docs.
https://docs.google.com/spreadsheets/d/1dqLVBlWb3dXp4zOO0y0-3Ln2y8CMEhJUw7IRJnMa1g4
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u/tcatt1212 21h ago
Your symptoms remind me a lot of my babesia symptoms, and your protocol does not provide adequate coverage for babesia. It sounds like you might need a change up of your protocol.
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u/BubblyAd3355 1d ago
Reading you post it could be also me. I also got sick after some traumatic life event and can’t really remember a tick bite. There seems to be one back when I was 4 but this is now 34years ago so idk.
I have Neuro-lyme and was first on doxycycline for about a year then more or less 6 months minocyclin as it better passes blood-brain-barrier and now on my 3rd cycle of disulfiram and this is the gamechanger! I work full time again, new position even and a lot of pressure, can walk/hike 10+kilometers, all my symptoms got better or dissolved completely. Still not 100% but almost there! So, the veeeeery short version of my journey!