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The most popular Products mentioned in /r/Lyme:
The most popular Services mentioned in /r/Lyme:
f.lux
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wikiHow
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The most popular reviews in /r/Lyme:
https://www.wikihow.com/Identify-a-Deer-Tick
If there's any chance that it's a deer tick, go to a doc ASAP and don't leave until you have month of antibiotic (Doxy or similar).
Disclaimer: not a medical professional. ;)
Agree. It’s worth a try. I just read the book Chronic. It tells the story of Kris Kristofferson in it, as well as tells the reader how impotent the medical community is towards vector born diseases.
You have a spinal headache . It’s a side effect of the procedure. Surprised they didn’t mention that this may happen. It’s not Lyme related. Basically some fluid is leaking out of the puncture they made. It should heal itself, but if it doesn’t then let your doctor know.
Agree. It may also be another co-infection that you haven’t been tested for yet. Read Chronic by Dr. Steven Phillips. It will open your eyes to the impotent medical system we have regarding vector born infections, like Lyme+. The longer you wait to get properly treated the harder it will be to get better.
There have been some advances in research, but honestly no, the patient experience is not much different than it was at the beginning of the millennium.
I mostly came to realize this through reading Kenneth Liegner's book which is full of references and primary source examples: https://www.amazon.com/Crucible-Chronic-Lyme-Disease-Associated/dp/1503587371
That's like textbook lyme man. I'll ask around to see if my docs know any good doctors in Northern Cal. In the meantime, there are some good books and documentaries you can watch on the subject.
Documentaries: Under Our Skin
Books:
A Cure Unknown by Pamela Weintraub
Why Can't I Get Better by Dr. Richard Horowitz
Other books that are interesting and that have helped me:
Mindfulness in Plain English
Misdiagnosed: The Adrenal Fatigue Link
Lol, okay, fair enough. This one's a peer reviewed journal. And it includes a few different strains and forms. https://www.researchgate.net/publication/23282180_Persisting_atypical_and_cystic_forms_of_Borrelia_burgdorferi_and_local_inflammation_in_Lyme_neuroborreliosis
It means you have Lyme. Welcome to a super shitty club 😩 it’s encouraging your immunologist has you tested though. I’d highly recommend reading this book, Healing Lyme. it was life changing to me!!
I get a lot of light sensitivity, so I use F.lux which takes blue light out of the computer display. By default it may transition on at sunset and off at sunrise, but I just leave it on all the time.
I also have several customizations to make both my browser and all web pages display in "dark mode". Let me know if you're interested in that info.
I can imagine that it's overwhelming. Are you in any way a bit familiar with IFTTT? I use "DO" https://ifttt.com/do_button and then made an applet with Google Drive. Named it: track bad days due Lyme. So all my bad days are nicely stored in a Google Spreadsheet.
https://www.amazon.com/dp/0062896288/ref=cm_sw_em_r_mt_dp_6HEE9PX2533RFPJ8XNXF
It’s a bioweapon. The guy who created it confessed on his death bed.
Even he got infected and possibly died from the disease.
Sure! For what it’s worth I was never a recreational user, I caught a couple of really terrible experiences in high school and never tried it again. It wasn’t until I was completely out of options for controlling my chronic pain due to degenerative disc disease, spinal osteoarthritis, degenerative arthritis, all stemming from a spinal fusion surgery when I was 12. I have a metal rod and five screws in my back. Oh yeah, and mold exposure, Lyme, a persistent clostridia infection, and multiple systemic infectious disease syndrome. And after a very good mother and woman I respect recommended cannabis, I decided to try it. I have 2 kids under 3 so I can’t be impaired. I started with a 3:1 CBD to THC tincture. Ask your bud tenders though! They’re a wealth of knowledge. You can tell them what your symptoms are, when you want to use it (daytime or nighttime) and they’ll help you! My local shop has a happy hour from 8-10am or 8-10pm and I get 20% off, plus my medical marijuana card means I don’t play tax.
For me, Cannabis is affordable, highly effective, and I had no uncomfortable side effects once I built a tolerance. You could do so by taking the tincture at night (it’ll help you sleep too).
You know, I’m starting to think that I have Bartonella too. I was originally diagnosed with Lyme, Babesia and Ehrichia (excuse the spelling) based off my bloodwork. My LLMD has not deviated since. I just finished reading [Chronic](//www.amazon.com/dp/0358064716/ref=cm_sw_r_cp_api_glt_fabc_9RHCM9ECNPJZJDD41Z9C) and the author seems to hint that the main thing that stems from a chronic tick-born illness sufferer from getting better is a stealth Bartonella infection. I’m going to ask my LLMD to include a Bartonella test in my next visit.
A few are from my third LLMD, but most are from Buhner's protocol. I was going the DIY route for a while there.
When my LLMD runs out of ideas, I get a new one. My third LLMD is an integrative medicine doctor so she uses both herbs and antibiotics.
But if you are interested in doing herbs alone, check this list under "Additional Resources." The author of the list is Buhner's partner, but she unfortunately stopped seeing patients maybe a year ago. I would expect her recommendations to be very good.
I should add that in addition to the rinses, I use a sinus medicine that helps tremendously! (link below) Make sure to use the night time version. The regular non drowsy versions do nothing for me, even at prescription strength. I normally get it from Costco but my Costco has not had it in recent months but luckily its on Amazon. I am sure though that you can get something similar at the grocery store. There is a very small amount of antihistimine in it (just 2mg, not enough to make me tired) I have been tested for allergies and I do not have any btw. I know of several other people who swear by this stuff for sinus related issues. https://www.amazon.com/gp/product/B00FVOWA76/ref=oh_aui_detailpage_o02_s00?ie=UTF8&psc=1
I don't take much Vitamin C lately but when I started I was doing 25g infusions once a week and it always helped, made me feel fantastic for two solid days. Expensive though. I take high-allicin garlic twice daily (900mg Kyolic) since many years and find it helpful, coagulation can be a big problem when trying to clear the blood of pathogens with antibiotics. I take a 50B CFU 10-strain probiotic twice a day to counter the antibiotic effects on my stomach, I really like the Intelligent Labs product available from Amazon and the price is right.
https://www.amazon.com/dp/B01AHFRNNE/
I used a lot of diatomaceous earth back in 2016, in those days I had many internal parasitic infections. Know that it contains a lot of silica though, and for some it may cause neurological disturbances if levels of other heavy metals are elevated. Interesting that you had such a reaction.
If you haven't already, Dr Burrascano's "Advanced Topics In Lyme Disease" is a great reference: http://www.lymenet.org/BurrGuide200810.pdf
I buy the straight Pinella and a dropper-full is amazing for brain fog. I think you can take that dose as often as needed, maybe a couple times a day? Not sure.
Burbur is supposedly good for detox but I have never noticed anything. Lemon water is an excellent detox - just fill a pitcher w water, slice 1 lemon and throw it in, put in fridge and have a glass a day! 🍋💚
Edit: Pinella dose is 10 drops in 4oz water. Let sit for 1 min & drink
I had no energy, dark circles around my eyes, and doing most anything tired me out. The product was recommended to me by my doc and I went through 5 small bottles or so. No side effects were had, just a boost in energy - somewhat like what you would expect from taking an adaptogen (ginseng, ashwagandha, etc). Amazon sellers are usually more expensive than naturopathic resellers, here's one:
https://www.amazon.com/Standard-Process-Desiccated-Production-Function/dp/B018XWKQSW
I was on Doxy for the first 4 weeks after diagnosis. During that time I did a lot of research. These things were the ones that came up the most consistently and seemed to make sense. I started on this protocol right after the Doxy. It's been 5 months now. I would say I improved 20% on the Doxy but felt terrible in other ways. Once I started this protocol I feel like I've improved 10%~ a month. I'm about 70% better now. I still have fatigue issues, some intermittent joint pain, occasional low level brain fog and much less tinnitus My energy has improved greatly and my feeling of helplessness has abided. In addition, I got a great book from my wife for Christmas (Tools of Titans by Tim Ferriss). In that book is a story about a doctor who got Lyme disease. One of the things he did was change to a Keto diet (very low carbs). I have read a lot about it and started on it last Wednesday. So far it is fantastic. Yesterday was the first day in months I actually felt like my old self! There seems to be quite a bit of success with this from other posts I've read. I would encourage you to do your own research and see it that's something that might work for you as well. As terrible as this has been (and my heart aches for those who have suffered undiagnosed for years), I vowed I will get over this and get my life back. So far this protocol seems to be working well and I believe the Keto diet may be the last piece of the puzzle I need. Time will tell. Please let me know if I can be of any additional assistance. Best of luck and God Bless. T
Dr. Klinghardt told me the best source was Compass Labs on Amazon.
I was getting the liposomal version through a compounding pharmacy but apparently there’s a widespread problem with heavy metal contamination.
Well, I just found out I may have mast cells activation syndrome expressed by COVID/vaccination and ehlor danlos syndrome which is not a maybe according to two doctors.
Add Lyme and EBV on top and I gotta say it's been fun. Diet is huge sadly. Finding the right support for the body and mind as well which is individualized. I've been on 100+ supplements and I can't say what did what most of the time. Cutting out corn, soy, tomato, spinach and some other stuff seemed to help so far more than anything.
Honestly if you're curious about any health issues you may have this might be worth a look. It's not gonna find everything, but it's cheaper than getting the blood work for it. It's currently on sale. The mthfr test is $56 with insurance, without is like 2-300$ I think. It's ridiculous either way. 23 and me is 129$ you can get it without the membership for 99$ if you don't want that extra stuff.
Phew, that’s a lot. I did 6 months doxycycline and 9 months of Buhner (among other things), Buhner is sooooo mannnny pillls. None of that helped me either.
The only thing I’ve been able to find that’s made a miraculous difference is this ACZ nano zeolite sublingual spray. It gave me my brain back. It was like a lightbulb was turned on— I could think again. After a few days, I could speak again without the intense confusion. It’s been a godsend for me and my family, and I highly recommend it. They also sell it in a smaller 2 oz size for $35 or $40. You could see if it helps you before committing to the 4 oz size for $75.
I’m currently doing the Byron White tinctures for babesia, bartonella and Lyme. 2 months each (3 bottles of each tincture). Also taking biocidin LSF for biofilm, EDTA suppositories for detoxing. Binders for the gut. Nystatin for candida overgrowth. Dozens of supplements and medicines for other things.
I hope you find something to help you. I’m sorry you’re suffering. These diseases are brutal.
azithromycin/ciprofloxacin, azithromycin/methylene blue, rifampin/ciprofloxacin, and rifampin/methylene blue. I used rifampin + methylene blue (14 drops twice a day) and got Bart under control in 6 weeks. Check out Dr. Todd Maderis
I used Compass Laboratories brand of Methylene Blue, 14 drops twice a day, available on Amazon. I've heard people use a powdered version and make their own liquid for a less expensive option. I stopped after 6 weeks because it does decrease estrogen in the body and I had gotten most of my Bart symptoms under control. YES the Wave One has definitely helped me. I immediately noticed more mental energy and positivity, and had beneficial herxing after 10 days of the Lyme program. I no longer need to take antibiotics. It's programmed to start off with an intro phase of detox/stress reduction/general immune support, then targets Lyme and coinfections in month 2, and then adds fungus, yeast, and mold to all that in month 3. Since I spent 3 weeks on dapsone prior, I called the office to progress me to month 2 (Lyme and coinfections) early. It's definitely working for me and also for my mother (lyme arthritis in knees) who has been on it for several months.
I’m sorry you’re struggling. I’m in the same boat myself and have been absolutely drained financially this year. A few tips: • I’m seeing Dr. K in Seattle and he recommended a brand of methylene blue that can be purchased on Amazon for ~$30. Much cheaper than the compounded formulas and a better source, according to him. Apparently it’s very helpful for Bartonella. Here’s the link: https://www.amazon.com/dp/B09J1JRSLC/ref=cm_sw_r_api_i_NJC4K5P2944860EZCWJ9_0?_encoding=UTF8&psc=1 • Neil Nathan recommends Banderol for Bartonella in his book, Toxic. I haven’t tried it yet, but I was a patient of his for five years and the guy is brilliant. Anything he suggests is worth trying. • Try to clean up your terrain as much as possible. Mimosa Pudica for parasites (+ detoxing is essential!), treating chronic viral infections (BRAVO probiotics, Baikalin, skullcap), optimizing sleep, eating well, etc. • Some sort of brain retraining. DNRS is popular. While I’m not there yet myself, I do believe those without endless financial resources can heal. It just takes a lot of persistence and dedication. Please remember that you’re not alone - I and so many others are going through this right alongside you. Wishing you the best!
No.
I was sick for over 21 years before I finally got a diagnosis. After spending thousands and thousands and thousands and thousands of dollars treating this aggressively, the single most important thing that helped clear my brain fog, allowed me to speak clearly again, allowed me to read again, and regain hope…
Is this nano zeolite sublingual spray.
Within 48 hours it was like a lightbulb turned on in my brain. Nothing short of miraculous.
I started using it on my daughter (4F, also has Lyme) and within 2 days her teacher pulled me aside, literally with tears in her eyes, and effusively told me about her massive gains in speech and social interactions. Literally said the words “she’s going to be okay. I just know it.”
So, yeah. It’s never too late.
Okay, thanks.
Here it is: I’ve spent 19 months and thousands and thousands of dollars in aggressive treatment. Like, nearly bankrupting our family for treatment. I was so sick with neuro symptoms I couldn’t even make a sandwich. Bread - filling - bread was too confusing. If I tried to go to the bathroom, I would end up in the laundry room, lost and confused. I had 2 kids under 2 and a deployed spouse. I was barely alive. The single most effective treatment that GAVE ME MY BRAIN BACK is this ACZ Nano Zeolite sublingual spray.
Within 48 hours I could talk again without the brain fog. Within a WEEK I was brainstorming again. Within two weeks I could read again. Within a month I felt my body flooding with hope.
I was bitten over 21 years before I was diagnosed. late stage / chronic Lyme, with neurological symptoms, is particularly insidious.
This is the ONE thing I wish I knew about at the very beginning.
The second thing is— get a doctor you trust. I spent 2 years with conventional medicine doctors. I had 5 different referrals and no one could figure out what was wrong with me. 6 months with my functional medicine doctor and I have different 14 diagnoses. Each one has greatly informed my care and has provided insight to the root cause of my overall health dysfunction. You need a doctor you can trust.
But do yourself a favor and buy that nano zeolite spray immediately.
I use this binder. I do recommend you take some sort of charcoal based binder, because otherwise you’ll feel sicker and sicker as the dead spirochetes build up in your gut. If you already have got gut dysbiosis, you need a binder to help absorb all of that so it doesn’t create an unfavorable condition for candida to grow. I’m on my SECOND round of anti fungals for candida overgrowth due to antibiotic use…. So even in the best circumstances, it can happen. Are you taking probiotics and probiotics too?
I feel you, on so many levels. My latest diagnosis is chronic active Epstein Barr virus disease (CA-EBV). I’ve had every symptom under the Sun, too. Still in the trenches. Slowly, slowly, slowly getting better. I started the CIRS protocol in May and what was supposed to be an easy 6 month protocol has me stranded in the detox phase, unable to move forward because I can’t pass the vision test required for the next phase.
My single worst symptom was brain fog. After almost 2 years, I’ve finally found a medicine that worked. ACZ zeolite spray. this single medicine has given me my sanity back. Yes, everything else is still awful. But my mind is no longer my prison, and I can’t tell you how much that means to me.
Do you have a doctor you’re working with that you trust?
Inability to regulate body temperature, speech delay/brain fog. We’ve started using this stuff with her, and she’s been having amazing results. Her teacher literally cried saying she’s making such huge improvements (socially, verbally) in preschool in the week we started using it. This same product helped clear my own brain fog and allowed me to verbalize and communicate better within 48 hours of use. So it’s not a stretch to think it’s doing the same for her, too.
It's been a few years now. I have reduced my dose substantially, but I find that when I go off of it, my sleep quality declines.
My doctor assures me that the dose I'm on (less than 5 mg) is safe and not creating a dependence or harming immune function. He (an MD) refers me to this book about the safe uses of cortisol. https://smile.amazon.com/Safe-Uses-Cortisol-William-Jefferies/dp/0398075018.
Are you taking GI binders like this one to absorb the spirochete die-off?? It’ll keep accumulating and make you feel awful ☹️
If you have neurological Lyme symptoms, get this one in addition.
If you’re actively killing the spirochetes, they’re dying and accumulating. A binder binds them and helps you pass them. It’s vital you stay “regular” during this process to continue excreting what you’re killing. Take magnesium pill or drink before bed to help facilitate.
You can get reaaaaally sick without using binders.
If you’re unable to get any more and don’t feel comfortable getting antibiotics online, consider taking an herbal approach. According to Stephen Buhner (author to Healing Lyme and many more books), astragalus root is useful for preventing new infection. It’s really inexpensive too. I’d take the following dosage:
1 pill on day 1 (8:00 am)
2 pills on day 2 (8:00 am, 12:00 pm)
2 pills on day 3 (repeat)
3 pills on day 4 (8 am, 12pm, 4pm)
3 pills on day 5 (repeat)
4 pills on day 6 (8am, 12 pm, 4pm, 8pm)
Repeat 4 pills a day for the next 3 months.
Then I would do a quality (out of pocket) Lyme test. Fingers crossed for you!
I have been struggling with severe brain fog, worsening steadily over the past four years. I FINALLY found something that worked!! Coseva Advanced TRS. $95 a freaking ounce. It’s a sub nano particle zeolite (clay) spray. I did some research on the ingredients and think this cheaper version here will hopefully work the same.
I really cannot praise this enough, I have spent thousands and thousands and thousands and thousands of dollars over the past four years, but this is the first thing to actually help my brain fog.
I feeeeeeel this in my booooones
Side note. If there was a fire and I could only grab one thing (besides my kids) I’d grab my Eleuthero tincture. I buy the 4 oz size. You should try and see if you like it. Don’t take it after 4pm.
You need to take a charcoal or clay based binder to absorb the spirochete die-off. I like this one.
I was on doxycycline for 6 months and experienced a whole range of symptoms and issues. Treatment was debilitating. I ended up discontinuing doxy because it destroyed my gut and I developed mast cell activation syndrome. Level 10 pain and now a whole bunch of new fun symptoms and meds to deal with, to fix the fall out from doxy. AND DOXY DID NOT WORK. (I’ve been infected for 25+ years).
Before you start ordering random herbs, read the book Healing Lyme by Buhner. It’ll help guide you.
Good luck and find a Lyme literate medical doctor immediately. The infectious disease doc is unlikely to be helpful.
This book that was just published is the most complete definitive manual on all aspects of Lyme disease. It will explain why you are herxing, and how to avoid it. It covers everything that can occur with Lyme disease.
Here’s the link https://www.amazon.com/dp/B0B8BM23RY
Babesia is a parasite, antibiotics don't work against parasites. Divergens is the worst and strongest strain of Babesia. It commonly takes about 4 months to clear this strain when you're in bad shape.
It gives malaria like fevers - that's where your sweating comes from.
Babesia invades your red blood cells and eats them from the inside. This is why you are starving for oxygen.
​
Here are a couple 30 min meal cookbooks that have been hugely helpful for my family:
Quick Prep Paleo: Simple Whole-Food Meals with 5 to 15 Minutes of Hands-On Time
Yes, that’s accurate.
If that isn’t something you’re interested in (yet), many people like to try the 20:1 CBD:THC gummies or tinctures. It’s a negligible amount of THC.
I see you’re in the chronic pain and MCAS groups. I have chronic pain and MCAS and it helps me tremendously with those symptoms in particular.
I struggle with this majorly as well. One thing that really helped me was when a doctor recommended using an infrared light over my liver for 30 seconds, five times a day. Within a month or so, the anger was just...gone. It was really shocking because I had been dealing with anger issues for years and it was not mild. But now I understand that anger is commonly associated with liver issues, which can very well be the result of prolonged toxicity from infections like Lyme & Co. As someone else mentioned, Bartonella could also be a contributing factor, but I would definitely give this a try as the total investment is around $20 and it was life changing for me.
This the light my doctor recommended. Note: You’ll also need to buy a DC 12V 500mA adaptor, which I found for around $8 Amazon.
Best detox protocol is opening and utilizing as many detox pathways as you can and have access to. For me that includes:
- Use of binders. Bill Rawls has a section in his book "Unlocking Lyme" that discusses particular qualities of different binder substances. You want to take these away from food and supplements so as not to inhibit the absorption of nutrients. I use GI Detox: https://www.amazon.com/G-I-Detox-Gentle-Binder-Biocidin/dp/B009KT9TEU
- Daily epsom salt baths
- Weekly infrared sauna to sweat out toxins
- Ensuring that you're having regular bowel movements. That's the body's main pathway of shunting out the poison. For me the only way that I can achieve a bowel movement at all is by doing a coffee enema. I hope one day my nerves will be repaired enough to restore normal digestive motility.
- Movement/light exercise. I go for short walks when I have the energy, and I have a little mini-trampoline that I'll lightly bounce on for about 20 minutes every day in an effort to get my lymphatic system moving.
You need to understand the history of the Lyme Disease first and foremost, and understand how they created Lyme disease to understand why you’re asking the wrong questions.
Bitten: The Secret History of Lyme Disease and Biological Weapons: https://www.amazon.com/dp/0062896288/ref=cm_sw_em_r_mt_dp_BJD433QVT38NJ0F9533F
What you should be asking is where did Lyme disease come from? Why did these bacterium not cause serious illness in humans until the 1960’s?
The statistical analysis of the genetic mutations of the bacterium will not tell you the functional changes of the bacterium or their ability to cause illness and disease. Even a 1% or less genetic mutation could be the functional difference between something being ineffective or causing a severe illness or disease.
It also fails to consider that “Lyme disease” is NOT a single infection, but a collection of co-infections. The co-infection profile varies from tick to tick, and person to person. Lyme disease is caused by a cocktail of infections, and to hyper focus on one specific spirochete is not logical when considering the big picture of what Lyme disease is, how it came to be, and why it causes such severe illness today.
It is a bioweapon.
The scientist who created it and died from it because he himself got infected in the lab confessed on tape shortly before his death and provided proof of his claims.
Bitten: The Secret History of Lyme Disease and Biological Weapons https://www.amazon.com/dp/006289627X/ref=cm_sw_r_awdo_8YKBV61WNJ35TAQ3QDP6
I’d recommend the book Healing Lyme by Stephen Harrod Buhner; particularly if you were considering taking the herbalism approach. Many people do not take anywhere near high enough dosage and therefore will not see much recovery. This book goes into lots of detail including dosages, symptoms, and the science behind it all. I will warn you, there are rules and protocols are not for the faint of heart, but it’s working for me. I had Lyme for over 21 years at least before being diagnosed, and I was truly on deaths door last year.
Doxy did this to me too. You’re experiencing a spirochete die-off and it’s accumulating, causing these awful symptoms. This stuff helped me a lot, really fast too.
I live in a 650sqft 1br apartment with my fiancee who owns a lot of stuff so I don't have much space for even things like sauna boxes. I got the blanket version because it seems to fold up pretty well and it doesn't take up a lot of space while I use it. I'm rotating between using it and epsom salt baths. It gets hot enough for me to sweat but it takes a while. Not sure if it helps yet but with all of these things it just takes experimentation. https://smile.amazon.com/gp/product/B07Z9D3F9P/ The big warning I see in reviews is some people get burned because they don't put some thin clothing or sheet around them with these things and they burn themselves. I haven't had a problem yet.
I've been dealing with Lyme for years now. This disease is expensive. You often throw money into the wind trying this thing or that thing and often what you buy doesn't make a difference. That being said, my personal philosophy is to find the most effective thing at the cheapest price. I had a regular sauna I used at the apartment complex I lived at until 2020. Until March 2020 I used my gym's sauna. After the pandemic hit I bought a portable, foldable IR sauna off Amazon.
I've used this one for two years now. It works fine. I think it comes with a chair so you can stick your head out. There are also holes to stick your arms out, but honestly you won't get hot enough doing that. If you are comfortable with it just get into the whole thing and zip up/cover all the holes. For reference I am about 6 foot tall and I can get in it without too much discomfort.
I preferred my gym sauna because it was hotter, but this one works as well. You might have to stay in a bit longer compared to a gym sauna as it only reaches 140 degrees. (Make sure you work your way up to longer sessions). Look into Rhonda Patrick as she is knowledgeable about sauna use and it's benefits.
Extra tip: With the weather/humidity warming up; try opening you windows when using on a warm/humid day. This will make you sweat even more.
Oh man, I hear you there. The chicken and egg thing with the trauma and these prolonged symptoms; it's so confusing wondering if you're messed up simply because of stress and severe nervous system dysregulation, or there's actually pathogens involved. It doesn't help that the medical culture is so quick to categorically dismiss so many of us as merely "anxiety" or "mental illness" cases.
I definitely fit right into what Daniel Kinderlehrer refers to as the "arc of illness". Major life trauma and loss immediately precipitated the terrible flu-like illness that was the onset of all of this. My four-year relationship fell apart, I had become caught in a deep valley of unemployment, and my world collapsed around me. Lost my home, my partner, my two young stepchildren whom I had bonded tightly with in an incredibly traumatic, stressful, prolonged breakup. I spent a good portion of last year concluding that these symptoms that I was going through were what complex-PTSD feels like, and chalked it up to being simply unable to move on. I still haven't been able to come to terms with the losses and am stuck in complicated grief about it, it all haunts me daily and in my dreams. No amount of therapy has been able to move the needle.
I finally connected the dots about it being potentially Lyme and/or co-infections in January. We lived on a farm, I've been bitten by at least a dozen ticks over the last three years, and we took in two stray cats who found their way to our place. With the trauma, it's no wonder my immune system and my nervous system completely blew up.
4 months on 2x a day doxy until I started feeling better….. but then by 6 months my gut was destroyed and I traded Lyme issues for a whole bunch of awful gut issues. Had I known what I know now… I wouldn’t have done doxy for a chronic (20+ year old) infection. It just did more harm than good. Reading Healing Lyme by Buhner changed my life. 2 months into the Protocol and I felt 30-40% better. I can’t wait to see how I feel after a year!!!
Phew this is gonna be a really long list. There are a LOT of considerations including dosages and interactions. I’d highly recommend reading Healing Lyme by Stephen Buhner. this herbal protocol completely changed my life!!
Here’s what helped my severe adrenal fatigue:
Higher dose vitamin c (2,000-4,000mg a day, work up to the dosage).
Make sure you’re taking a bioavailable magnesium or using an elemental magnesium spray on your body.
Keep taking the ashwagandha low dose (however much you can tolerate) 3-4x a day. Gradually raise the dosage until you get to one dropper 3-4x a day, with a higher dosage at night (like 3-4 droppers).
Add Cryptolepsis tincture in, I like this one. Start at a LOW DOSE 1/4 dropper 3-4x a day and then gradually increase to 1/2 a dropper 3-4x a day. I had severe night sweats and a whole host of other issues and this is the only thing that has ever helped. I’m now weaning off of it!!!!
Sleep when you can. Drink as much water as you can, with a splash of salt in it. Make sure your electrolytes are balanced- eat a banana/things high in potassium. Feed your body nutritious unprocessed food.
Use melatonin if you have trouble sleeping.
Can you expound on the breathing problems?
For bloat, the only thing that helps me is intermittent fasting (I do 16:8 but found relief from even 12:12) and a bitter spray for your tongue. By spraying something bitter on your tongue, it activates your stomach acid and gets them moving. It thinks you’re eating even if you’re not. It helps my nausea tremendously too. I make the bitter spray myself but you can buy one like this.
Who says they are bites? Could be bartonella flaring.
I went with this one instead:
https://www.amazon.com/gp/product/B07NCPMKNQ/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1
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Lets compare notes! lol. Ill try to write back once I take it for a bit.
Are you taking anything to absorb the spirochete die off? I really like this one.
Each of my pregnancies I drank red raspberry leaf (with other herbs) as part of a daily medicinal infusion. I had speedy births (9 hours and 2.5 hours respectively) and recovered from quickly. Red raspberry leaf has been used as a woman’s uterine tonic for centuries! Are you having specific symptoms like cramping? I use this tincture to help with cramps.
Cutting down inflammation is about the only thing you can do short-term, and long-term treatment will slowly easy the pain.
For about 3 years it felt like there was a railroad stake through my left knee. Now only when I eat bad food do I notice any pain in my knee.
Serrapeptaste is pretty helpful in the short term.
Cool!! This is the one I take. Broccoli Max!
This book gave me hope again. I’ve been on the full dose of the herbal protocol for 5 weeks now and my brain is finally coming back online. I had to discontinue antibiotics and my doctor is testing me for h.pylori to see if that’s what’s causing my gut issues. I finally have hope that I’m healing and it’s finally gaining traction. Please read this book and see if it helps you.
I have 2 kids under 3 and was diagnosed with Lyme in March. The best herb I’ve found for natural energy (I can’t drink coffee anymore) is Eleuthero 1:1 tincture, 2x a day (when I wake up and around noon). I like this one.
I also highly recommend this book.
>I read that 14% of people with MS are misdiagnosed and actually have Lyme. That’s a big number of misdiagnosis.
I'm reading the book Chronic and numbers could be more than that, mis-diagnosed with MS, ALS, Fibromyalgia. They also warn about immunosuppressants as being expensive and costly, and ignoring the infectious root of these disease(s)...
Anyway the book is informative about what is has happened and what is actually happening in treating tick-borne disease, MSIDS, etc..
Thanks for the info. I just started taking Liposomal Glutathione and N-acetyl cysteine (NAC) and have noticed a real difference, at least so far… FYI, NAC is not as easy to get anymore. The FDA clamped down a few months back because people and internet sleuths were taking it as a treatment for COVID. Since then Amazon took it off their platform. I think you can still get it on individual supplement websites though.
Do you know if Thymosin Alpha 1 is available through prescription?
Thanks for the info. I just started taking Liposomal Glutathione and N-acetyl cysteine (NAC) and have noticed a real difference, at least so far… FYI, NAC is not as easy to get anymore. The FDA clamped down a few months back because people and internet sleuths were taking it as a treatment for COVID. Since then Amazon took it off their platform. I think you can still get it on individual supplement websites though.
Do you know if Thymosin Alpha 1 is available through prescription?
Isn’t it ironic you’re saying this on a sub about a disease that is literally from a leaked bioweapon research? And, no, I’m not talking about Covid.
https://www.amazon.com/Bitten-History-Disease-Biological-Weapons/dp/006289627X/ref=nodl_
You big pharma fascist shills need to educate yourselves on what you’re dealing with.
Everything that’s happening right now was tried before with Lyme disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/
It’s history repeating itself.
Never trust a corrupt government who creates diseases and then tries to sell you the cure.
Are you taking a binder? Something like this to help reduce symptoms? It’s normal to get worse before you get better with antibiotics, but you need something to absorb the spirochete die off.
I’d get something like this and use it on my hands/any visible skin/clothes before I get into my car. Bring a change of clothes (sweatshirt or zip up jacket) that can be removed. Always wash your hands with the special lead removing soap the ranges usually carry.
I use this pain relief stick on my forehead that helps a bit. It has camphor, menthol, CBD, and some essential oils. The brand is CBD Clinic, and it’s their level 5 stick, but I’m not quite sure where you could get it online. I get it through my acupuncturist. Avoiding light helps for me too. I wear sun glasses anytime I go outside. Supplement wise: magnesium and Butterburr Extra. Tylenol helps, and so does excedrin but I try not to do those all the time.
I'm not 100% if my experience is the same as you are describing, but I have daily tension headaches that feel like a band is squeezing my head. Some things that help: magnesium, this butterbur blend, and I also benefit from applying a CBD, menthol, and camphor cream to my forehead. I don't know which bacteria causes this, but I've been diagnosed with Lyme, Babesia, and Bartonella, and have had this for years.
Make sure whatever B supplement you take has folate in it. MTHFR mutations are super common in Lyme patients and if you have one, taking B vitamins without folate can make you feel bad. My doc has me on this one. I also take D+K
I am taking these:
https://www.amazon.com/dp/B00IR84RK6?psc=1&ref=ppx_yo2_dt_b_product_details
They are softgels, and I'm not burping at all
I buy empty capsules online and fill them by scooping a tablespoon full of it and scraping powder into them. It gets messy, so I do it over a plate in bulk (making around 100 while watching shows) so I don't have to wash it off my hands every day, because it's oddly sticky and I hate that.
That takes away all the grossness so I recommend that! I couldn't even stand the taste of any powder I've taken in smoothies.
These pills are size 1, and size 0 pills are smaller. If you have issues with swallowing pills you might need smaller, though I don't find 1 outrageously large. This is the large pack I get and it lasted me over a year. 1000 Empty Gelatin Capsules Size 1 (Kosher/Halal) Gel Caps By PurecapsUSA https://www.amazon.com/dp/B00I6Q18B0/ref=cm_sw_r_cp_apa_glc_i_4WMJFDCA57MKS0ZZKWN3
I have to buy and fill my own capsules, but this powder was the #1 reason I was able to become functional again. It's great for the heart, inflammation, and blood flow. It positively affected every area of my body, and although it did make me herx, it wasn't as harsh as other herxes because the improved bloodflow and inflammation benefits offset the pain.
USDA Certified Organic Japanese Knotweed Powder, 226 Grams, Natural Trans-resveratrol, Non GMO, Gluten Free, Also Known as Polygonum Cuspidatum https://www.amazon.com/dp/B015JWKYVS/ref=cm_sw_r_cp_apa_glc_i_PPMWN8W3BCAGF6FYH6KD
Also, you do realize Lyme disease is the result of a bioweapon research?
You need to go educate yourself on what you’re actually dealing with and accept reality for what it is: https://www.amazon.com/Bitten-History-Disease-Biological-Weapons/dp/006289627X
It’s so fucking ironic to accuse someone of linking to peer reviewed medical research studies of being a conspiracy theory when you’re on a subreddit for a disease that’s literally a conspiracy.
Lyme disease is a brain infection. You treat it by treating the infection. Not by taking drugs that have been proven to make infections worse. You need antimicrobials and detox binders, not psych meds.
Yes. There are some resources online, Facebook has some as well. But the person who pioneered it wrote a book and if I was just starting out I would get it. It explains everything pretty well.
It really is neurotoxicity. Have you tried ornithine yet? It's awesome for cleaning up the ammonia caused by die-off. Hulda Clark talks about it in her books, 4000mg (taken all at once, 8x 500mg capsules) once or twice daily will cover even the most aggressive treatment in my experience.
https://www.amazon.com/Now-L-Ornithine-500-120-Capsules/dp/B0013OQLJQ
Cheaper at iHerb, but Amazon will usually get it to you faster. Hope this helps!
https://www.amazon.com/Solgar-Chelated-Magnesium-250-Tablets/dp/B000GJQEWI
this but I've actually had someone on here comment that its not the best kind out there. I'm sure there's better, but it works for me lol. It's also a tad bit cheaper at the co-op I pick it up at. Like $12-16 bucks. Amazon is more expensive :/
https://www.amazon.com/Solgar-Chelated-Magnesium-250-Tablets/dp/B000GJQEWI
this but I've actually had someone on here comment that its not the best kind out there. I'm sure there's better, but it works for me lol. It's also a tad bit cheaper at the co-op I pick it up at. Like $12-16 bucks. Amazon is more expensive :/
I use this one so I can lie down https://www.amazon.com/AltraTech-Upgraded-Infrared-Overheating-Protection/dp/B07V9NCN6T/ref=sr_1_3?dchild=1&keywords=sauna+blanket&qid=1608093999&sr=8-3
It works great, it's inexpensive for its kind, but it's been good to me, I use it at least twice a week. The only thing wrong so far is the instruction booklet is a joke and the bottom heat pad feels hotter than the top at the same temperate, but you can set the temperatures of each differently to compensate.
I got one on Amazon.
https://www.amazon.com/dp/B000ZGQUJO/ref=cm_sw_r_cp_apa_fabc_JRd2FbQX9AHYF
I believe it was this one. I am 6'6" its a tight fit but works well I put it at 150° and I sweat like crazy
Yeah https://www.amazon.com/Natures-Secret-Cranberry-Capsules-60-Count/dp/B0030BF84O
Idk if its a diuretic, my doc didn't mention if it was or not. I've taken spironolactone which is a real diuretic for sure and I have to drink a crap ton of water with it or else it can help with my UTIs and whatnot
My first thought is MOLD. I suffered a huge flare up when moving into a new apartment where I was exposed to a lot of mold. In addition to increased lyme symptoms, I experienced a lot of nausea, throat and nose issues, extra fatigue, etc. It really took a huge toll on me and it wasn't until I moved that I noticed an improvement. It may be worth looking into mold myotoxin (sp?) testing (I think there is nasal and urine).
This is a very helpful book on the topic: https://www.amazon.com/Toxic-Toxicity-Multiple-Sensitivities-Environmental/dp/1628603119
I finished 8 weeks of doxy and malarone and had the worst heartburn ever. my LLMD put me on DGL+
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I got a lot better but find myself still experiencing it sometimes. I think I just have to give it more time.
So my headaches we not one sided but the since sinuses are separate chambers you can have the bacteria in one but not in the others. Mine started in the forehead sinuses, then moved down to the ones below my eyes and then months into my illness moved into the sinus chambers behind my ears.
As to the neti pot, I've never used one but my understanding of how they work is that there isn't any water pressure involved so I would think that it wouldn't work as well as the Neil Med rinse which is a squeeze bottle and able to get up into the sinuses better.
These are my favorite pain relief pills. You can get them at Costco but here is the link to them on amazon. The box has daytime and nighttime versions, its the nighttime ones that work really well. For me at least, they don't make to very tired at all even though I tend to be really groggy after taking just a Tylenol PM.
https://www.amazon.com/gp/product/B00FVOWA76/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1
Can you share which one you order from Amazon? Any at a lower price? And do you think pink himalayan salt would work for adding to food? That's what I use and I supplement with iodine from kelp since it's almost absent in American diets.
Edit: this is the one and it's way priced real high
I don't think too many retailers carry it, most people I know order it from amazon: https://www.amazon.com/Alka-Seltzer-Effervescent-Gold-Tablets-Pack/dp/B0792MQ6MS/ref=sr_1_4_a_it?ie=UTF8&qid=1546796623&sr=8-4&keywords=alka+seltzer+gold
I was in Occupation Therapy for Carpal Tunnel (which I figure was from a combination of Lyme and the unavoidable repetitive motions of my former job) and it helped immensely. I went from barely being able to lift 2 pounds, to currently lifting full gallons of water, small hand dumbbells, laundry baskets, etc...pain free. Check out your insurance policy, some come with coverage for a certain number of sessions or a 60-day treatment period. I searched Amazon for some of the exercise tools that I used in OT to continue them at home and most were very reasonably priced. If I had to choose only one item to recommend, I highly suggest looking into baoding balls. This is the set I have (I intentionally chose a set that didn’t chime, however I’m sure that many people prefer the ones that do as they can be therapeutic/soothing), however there are many other sizes and weights depending on your hand size.
https://www.amazon.com/dp/B077HYV5WC/ref=cm_sw_r_cp_api_i_vSEzCb35WCXZ1
in my personal experience, unless I was already sleep deprived, I could never sleep past like 4 hours.. From then on, it's restlessness with brief sleeps. I found a more bio-available form of magnesium than the one I used to take and it completely fixed my sleep issues single-handedly. My other trick when I wake up like 2-3 hours before i want to is to chug water. It sounds stupid but just try it. I typically drink 64oz before bed and another 32 ready on bed stand if I wake up.
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2 things worth trying, goodluck!
if you're curious to pursue, here's a link to the mag I take. I've never done a background check on the company so do with it as you may.. just found it on amazon based on certain magnesium forms I sought. https://www.amazon.com/Triple-Calm-Magnesium-Glycinate-Relaxation/dp/B01GW4V7MC/ref=sr_1_18?crid=1GR18LHX6W5VF&keywords=magnesium+taurate&qid=1558648940&s=gateway&sprefix=magnesium+tau%2Caps%2C168&sr=8-18
The Buhner protocol is outlined in his book, Healing Lyme 2nd edition. This is the core protocol, and the purpose of each herb or supplement:
- Polygonum cuspidatum (Japanese knotweed, often sold as resveratrol) - endothelial protection
- Salvia miltiorrhiza (red sage) - cytokine remodulation
- Scutellaria baicalensis (baical skullcap) - cytokine remodulation
- Gelatin - collagen protection
- Vitamin C - collagen protection
- Selenium - collagen protection
- Uncaria tomentosa (cat's claw) - immune remodulation
- Cordyceps - immune remodulation
- Withania somnifera (ashwagandha) - immune remodulation
- Eleutherococcus senticosus (eleuthero) - immune remodulation
- Glycyrrhiza (licorice) - immune remodulation
- Andrographis - antispirochetal
- Uncaria rhynchophylla (gou teng) - antiinflammatory (especialy recommended for neuroborreliosis)
So the Buhner protocol is fairly complicated. The shorter list that you found might have been what he published in the first edition. I only have the second.
I have still not tried everything on this list, but I have seen benefit from eleuthero, Japanese knotweed, and gou teng. Maybe a little from red sage and baical skullcap. You would need to experiment and see what works for you, though.
There is also a list of other things to try for specific symptoms. His other books cover some of the main coinfections, if you have any of those.
Currently I'm on artemisinin (along with antibiotics) and this blend from Amazon: https://www.amazon.com/Samsara-Herbs-Tick-Immune-Support/dp/B07NCPMKNQ/ref=mp_s_a_1_3?dchild=1&keywords=tick+recovery&qid=1590961600&sr=8-3
It's very very hard to get a doctor to treat you unless you go outside of insurance (and find an LLMD). They risk losing their jobs, but I'd bring up Babesia to your PCP. Push for testing. I found that most regular doctors take the possibility of a parasitical infection more serious than Lyme.
If you test positive, push for azithromycin and mepron. Azithromycin attacks babesia, bartonella, and Lyme. Mepron is a biofilm buster.
I get it, I do ): it's bullshit. This should be illegal, the way the health industry lets people with Lyme suffer.
Frankly I don't know that much about herbal protocal, only that I found immense relief from Babesia using artemisinin (also can be ordered on Amazon) & the blend I use has a lot of Lyme killing stuff like stevia, cat's claw, Japanese knotweed. There's ton of info on here on what herbal products work best.
Hang in there, it does get better.
I know the feeling of bad herxes (not from ozone, but from other treatments). I’ve had success with NAC, ALA, glutathione, CBD oil, Chinese skullcap, milk thistle (for the liver) and burbur pinella tincture. I also have done lymphatic massage with a massage wand and supporting my lymphatic system with red root decoction and teas made from cleavers and red clover. If you have nausea, marshmallow root in the tea helps with mine.
I also use an acupressure mat and pillow I got off Amazon for $20. It hurts at first but it really helped me through some rough herxes after about 10 minutes. I’d fall asleep on it sometimes.
Also helpful: Drinking water consistently as much as feels comfortable.
ProsourceFit Acupressure Mat and Pillow Set for Back/Neck Pain Relief and Muscle Relaxation https://www.amazon.com/dp/B00N24PK6A/ref=cm_sw_r_cp_api_i_qkZQEb1P98796
I couldn't tolerate Azithromycin at all (even a quarter of the pill) let alone Mepron, so my LLMD told me to purchase Artemisinin. I've been taking it for a month and it's helped with Babesia SO MUCH in terms of my cognitive problems & dysautomnia.
I'd say start with taking a quarter of the Azithromycin the first time to see if you can tolerate it. Mepron can be nasty, I've heard, so I'd try the Azithromycin first before you even touch the Mepron. I had a terrible time with Azithro & couldn't even do a quarter every few days.
Artemisinin is a really good starting point if you can't tolerate the herx yet. You can just get it on Amazon. The brand my LLMD recommended was this one: https://www.amazon.com/Artemisinin-Capsules-BioPerine-Absorption-Vegetarian/dp/B06XWY27J8/ref=sr_1_1_sspa?keywords=artemisinin&qid=1583333409&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEySkY4UFZEQUlBTk5NJmVuY3J5cHRlZElkPUExMDAxNjI0MUlDQjNQODhDVEM0JmVuY3J5cHRlZEFkSWQ9QTA1MjQ5MTgyQTJTT1gwSkdVTEFGJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==
Good luck!
Have you tried using weighted blanket? Research studies shows that weighted blankets, being a deep pressure technique, is proven to lower anxiety of the user. With the weighted blanket your muscles are getting the stimulation that they crave, all while keeping it relatively still. It helps to keep your body calm so that you can fall asleep without any movements waking them you up constantly.
I got my favorite weighted blanket from a seller in Amazon for only around $65. Super worth it and the quality is amazing! I also bought one for my daughter who has struggle with sleeping and we can now sleep 8hrs straight and wake up feeling well rested and energized.
https://www.amazon.com/gp/product/B009EA6FZG/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&th=1
It is recommended to take selenium, magnesium, b complex, and vitamin c as support supplements to aid in iodine uptake.
Shoot, I'm sorry to hear that. Have you explored other things like mold, MCAS, heavy metals, thyroid, viruses, parasites, etc? if antimicrobials aren't helping it may be another more important factor holding you back, I know for quite a few lyme patients it can be other factors that are the primary issue.
I've heard Dr Neil Nathan's book called Toxic is quite good, might be worth checking out, maybe could give you some new angles to explore. https://www.amazon.com/Toxic-Toxicity-Multiple-Sensitivities-Environmental/dp/1628603119
I never asked you to keep it to yourself. I think sharing treatments is very valuable. All I was asking was to share more information about the treatment, where to find others using it, what risks to watch out for, etc. I had assumed you would have much more research on this than myself, and thought it would be valuable to patients.
I did some quick research myself:
There seems to be a guy who wrote a book on it and people reported success: https://smile.amazon.com/Salt-Plus-Protocol-Lyme-Infection/dp/1463575483/
That same guy seems to have a website which links to a yahoo groups page with thousands of people in it.
I found this printout that has more details on a potential treatment and it makes an attempt to explain why it works, and what risks you have to watch out for:
https://www.connersclinic.com/wp-content/uploads/2015/09/Beating-Lyme-Section-4-PDF.pdf
But since I have never done it and only spent 5 minutes researching it, I have no idea which source is good, or if there are better places to learn more about it. I thought you may know more and that it would be valuable to share.
Lyme patients see so many different claims of cures it's hard to process. So in order for people to choose treatment plan over another it's very valuable to patients to show them information about a proposed treatment.