(Part 2) Best products from r/Lyme

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.

Yeah. It definitely is. I got headaches which caffiene seemed to help. I stopped taking the salt for a bit to see if sweet gum spirits was more effective but I think the salt and c is the way to go at least for a bit bc the die off was more noticeable so seemed to be working well. Another helpful thing I'll be taking once a week is sweet gum spirits. Many people swear by this old time remedy that somehow seems to be erased from history.
https://www.amazon.com/100-Pure-Gum-Spirits-Turpentine/dp/B00KE62DWS/ref=mp_s_a_1_3?keywords=turpentine&qid=1562677262&s=gateway&sprefix=tourpentine&sr=8-3

Check out the reviews. I will definitely be taking a tsp twice a month after this and I've taken it 5 days in a row with no issues. Those things with a mostly plant based diet should get us in The right direction. 😊

Sibo is small intestinal bacterial overgrowth. Bad gut bacteria that produce ammonia. Like Lyme.. And like Lyme they mess with the brain. One of the main causes is antibiotics use.. My doctor says my Lyme is under control but I still have gut issues and memory problems. I've taken several courses of gut antibiotics for the sibo and miraculous, my mind was clear again! Day and night difference! Also another thing to consider is yeast overgrowth. It can have the same effect as sibo. I keep relapsing because when the sibo is under control the yeast flares up and vice versa..
One solution could be a fecal transplant!

Good resources:

• http://www.siboinfo.com/
  
• https://www.amazon.com/Gut-Health-Protocol-Nutritional-Intestinal/dp/1511560878 (each page has tons of pubmed references, recommended)
  
• https://chriskresser.com/sibo-what-causes-it-and-why-its-so-hard-to-treat/
  
  A better, more scientific name for leaky gut is intestinal permeability.
  High doses of colostrum (10 gram/day) and l-glutamine (up to 50 gram/day) should help fix it.
  
  Anyway, don't want to get your hopes up too high. We are all different after all...
  
  If fixing the gut doesn't solve your problems, you can always look into nootropics.
  
  
• https://www.reddit.com/r/Nootropics/
  
• https://www.reddit.com/r/StackAdvice/search?q=memory&restrict_sr=on&include_over_18=on&sort=relevance&t=all

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.

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

Also, if you haven’t tried CBD oil, while it can be pricey...I found it to be incredibly helpful especially at night, and often I fell asleep with zero or nearly zero pain.

you want everything we know? I have a giant notepad full of info...

• Find a LLMD:
  https://www.ilads.org/patient-care/provider-search
  
  https://www.lymedisease.org/members/lyme-disease-doctors/
  
  
• You had a Western Blot done with various positive bands? Congrats, it's probably Lyme even though they told you it was "negative for Lyme."
  
• Get Igenex testing done. Yes it's expensive. You know what else is expensive? Wasting $$$ on useless brain MRIs that the neurologist orders for you every year.
  
• No, you probably never even saw the tick bite, most of us didn't
  
• Oh you had a tick bite? Congrats, you have Lyme
  
• No, 10 days of doxy is NOT enough. Go get more. You need at least a month.
  
• Barely anyone gets a bullseye rash. I read a statistic that said only 17% of people get it. If you got one — congrats, you have Lyme.
  
• There are ticks in cities -- you can get Lyme walking through Central Park.
  
• Not everyone gets joint pain (I had neuro symptoms for 7 years before I had joint pain)
  
• Yes, it can cause psych symptoms, deja vu, anger, anxiety, depression, and depersonalization. No, you're not crazy.
  
• No, it's not just stress. Stress doesn't make your arm go numb during a heat wave.
  
• Alcohol intolerance is a very important early symptom. Very few other things cause this (Hodgkins lymphoma?)
  
• Don't go to a neurologist, rheumatologist, the Mayo Clinic, or an infectious disease doctor, they will not help you, they will likely just lie to you
  
• No, it's not "chronic fatigue" or "fibromyalgia" or any other bullshit diagnosis they try to give you
  
• Yes, Lyme can cause every bizarre weirdo fucking symptom you can think of (vibrating sensation, feeling of water running down your leg, spasticity, can’t remember words)
  
• Lyme can go dormant for years
  
• If you have Multiple Sclerosis you probably really have Lyme
  
• Ignore the salt/vitamin c guy who posts here
  
• Yes, there is Lyme and ticks in every state. That one too. Yes, mosquitos carry it too
  
• Info on co-infections (Babesia, Bartonella, Ehrlichia, Mycoplasma, Anaplasmosis, Rocky Mountain Spotted Fever), aka it's probably not just Lyme. Ticks have over 100 different types of bacteria, with new ones being discovered every year. There are even different types of Borrelia burgdorferi depending on what part of the country you're in. There are 29 strains of Bartonella alone.
  
• Clean up your diet: Keto or Paleo may help. Give up gluten, dairy, sugar, and processed foods. Borrelia feeds off of sugar.
  
• Some people heal with just herbs (Buhner or Cowden protocol)
  
• Why do I feel like I'm dying when I take antibiotics or herbs? Herxheimer reaction
  
• It's Lyme singular, NOT "Lymes"
  
  TREATMENT:
  
  
  BUHNER PROTOCOL:
  
  https://www.healingwell.com/community/default.aspx?f=30&m=4127022
  
  http://buhnerhealinglyme.com
  
  https://techpost.io/hacking-chronic-lyme-disease-and-co-infections/
  
  
  
  Disulfiram
  (new treatment that not many LLMD’s are using):
  
  https://www.lymedisease.org/disulfiram-kinderlehrer/
  
  https://clinicaltrials.gov/ct2/show/NCT03891667
  
  https://recruit.cumc.columbia.edu/clinical_trial/1661
  
  There’s a private Facebook group too
  
  
  COWDEN:
  (need links)
  
  
  BLOODWORK INFO:
  
  
• Western Blot - aka “what the hell are bands?” https://www.healingwell.com/community/default.aspx?f=30&m=4147204
  
• Igenex
  
• Armin Labs - Germany
  
• DNA Connections
  
• Galaxy Diagnostics - specifically for Bartonella testing https://www.galaxydx.com
  
• CD-57 for immune response (need a link/info for this)
  
  Lyme-specific bands: 23, 31, 34, 39 and 83/93
  
  BARTONELLA:
  
  https://youtu.be/uYEHsRRxrQw
  
  http://www.townsendletter.com/July2015/bartonellosis0715.html
  
  BOOKS:
  
  Stephen Buhner, Healing Lyme
  
  https://www.amazon.com/Healing-Lyme-Borreliosis-Coinfections-Rickettsiosis/dp/0970869649/ref=sr_1_2?keywords=Buhner+healing+lyme&qid=1567635287&s=gateway&sr=8-2
  
  Stephen Buhner, Healing Lyme Co-Infections
  https://www.amazon.com/gp/product/1620550083/ref=ox_sc_saved_title_5?smid=ATVPDKIKX0DER&psc=1
  
  Unlocking Lyme
  https://www.amazon.com/gp/product/0982322526/ref=ox_sc_saved_title_4?smid=ATVPDKIKX0DER&psc=1
  
  Why Can’t I Get Better?
  https://www.amazon.com/s?k=Buhner+healing+lyme&ref=nb_sb_noss_2
  
  Cure Unknown
  https://www.amazon.com/gp/product/1250044561/ref=ox_sc_saved_title_6?smid=ATVPDKIKX0DER&psc=1
  
  Believe Me - Yolanda Hadid (celebrity)
  https://www.amazon.com/Believe-Me-Invisible-Disability-Disease/dp/1250132770/ref=sr_1_1?keywords=lyme+yolanda&qid=1567635346&s=gateway&sr=8-1
  
  Bitten
  
  https://www.amazon.com/Bitten-History-Disease-Biological-Weapons/dp/006289627X/ref=pd_sbs_14_9?_encoding=UTF8&pd_rd_i=006289627X&pd_rd_r=2275bf65-9f9d-4e9d-bd21-f907c727b622&pd_rd_w=FyN0V&pd_rd_wg=yhka3&pf_rd_p=1c11b7ff-9ffb-4ba6-8036-be1b0afa79bb&pf_rd_r=2GVJQT1XQ2PXA4R98XYH&psc=1&refRID=2GVJQT1XQ2PXA4R98XYH
  
  ARTICLES:
  
  https://www.elephantjournal.com/2016/04/i-survived-lyme-disease-and-you-will-too/
  
  https://globallymealliance.org/marisol-thomas-existing-with-late-state-neurological-lyme-disease/
  
  https://affairsofliving.com/blog/2010/12/9/my-lyme-disease-is-not-the-idsa-lyme-disease.html
  
  https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/
  
  https://www.lymedisease.org/mylymedata-catherine-fox/
  
  https://blogs.scientificamerican.com/observations/its-time-to-get-serious-about-tick-borne-diseases/
  
  https://folks.pillpack.com/the-worst-thing-about-lyme-disease-is-what-it-does-to-your-mind/
  
  https://www.huffpost.com/entry/what-lyme-disease-feels-like_b_7539130
  
  https://www.huffpost.com/entry/its-a-scandal--daryl-hall_b_11118332
  
  SYMPTOM LISTS:
  
  https://canlyme.com/lyme-basics/symptoms/
  
  https://www.prohealth.com/library/a-deep-look-at-the-symptoms-of-six-major-lyme-related-infections-41139
  
  https://www.lymedisease.org/lyme-disease-symptom-checklist/
  
  DOCUMENTARIES:
  
  
• Under Our Skin
  https://underourskin.com
  
  
• Heal (Netflix) - not specifically about Lyme, but informative and gives you hope
  
  
• The Paleo Way (Netflix only has season 2) - this is just a really good cooking show about the Paleo diet and health
  
  
  DETOX METHODS:
  
  https://www.tiredoflyme.com/detox-methods.html
  
  http://www.ladyoflyme.com/blog/burbur-drops-lyme-detox
  
  https://affairsofliving.com/blog/2010/7/5/helpful-hints-for-battling-a-herxheimer-reaction-or-my-adven.html
  
  Binders:
  
  https://alisonvickery.com.au/binders/
  
  
• activated charcoal (take on an empty stomach and 1-2 hours from meds)
  
• citrus pectin
  
• Zeolite
  
• bentonite clay (food grade)
  
  Make the body alkaline:
  
  
• lemon water
  
• Alka Selter Gold tabs (I have to get these on amazon, can’t find them in stores)
  
  Detox baths and sweating (20-30min):
  
  
• dry brush the skin before baths (brush twds the heart)
  
• epsom salt (3 cups) and peroxide (16 ounces)
  
• epsom salt (1-3 cups) and bentonite clay (1/2 cup)
  
• infrared sauna 5-30min
  
  For headaches and histamine reaction:
  
  
• Benadryl
  
  Brain/nerve detox:
  
  
• Burbur and Pinella detox
  
• Jernigan Neuro-Antitox https://www.jnutra.com/products/neuro-antitox-ii-cns-pns?variant=18838316810336
  
• L-Ornithine (gets rid of excess ammonia)
  
  HEALING:
  
  
• Meditation
  
  • https://youtu.be/jK2hS40pr-g
    
  • https://youtu.be/RCCeEXs-6Nc
    
• Vagus nerve stimulation
  
  • https://darouwellness.com/the-vagus-nerve-how-inflammation-can-be-controlled-by-the-brain/?fbclid=IwAR2lePixdHcMDg0lgQXlhsEr16C-vQbd4nCqcFSOmzHrBodsI5KdX545s7c
    
  • https://drarielleschwartz.com/natural-vagus-nerve-stimulation-dr-arielle-schwartz/#.XY4vsS3MzOQ
    
  • https://drarielleschwartz.com/vagus-nerve-yoga-dr-arielle-schwartz/#.XY5f6i3MzOQ
    
  • https://drprincetta.com/tag/humming/
    
  • https://www.optimallivingdynamics.com/blog/how-to-stimulate-your-vagus-nerve-for-better-mental-health-brain-vns-ways-treatment-activate-natural-foods-depression-anxiety-stress-heart-rate-variability-yoga-massage-vagal-tone-dysfunction
    
  • https://me-pedia.org/wiki/File:Cranial_Nerves.png
    
  • https://me-pedia.org/wiki/Vagus_nerve_infection_hypothesis
    
  • http://simmaronresearch.com/2013/12/one-theory-explain-vagus-nerve-infection-chronic-fatigue-syndrome/
    
• ASMR (this helps my nerve pain, I know it’s weird) https://youtu.be/xyW5HZIj7ZE
  
• Yoga https://youtu.be/Ba0fweKUwIc
  
• Nature (hmm… maybe go to the ocean, not the woods)
  
• Exercise
  
• Laughter
  
• Neuroplasticity (need books, links)
  
• Positivity
  
• Music or Art
  
  SUCCESS STORIES:
  
  
  https://www.healingwell.com/community/default.aspx?f=30&m=3683338
  
  HOPE:
  
  https://www.outsideonline.com/2402641/kirby-morrill-appalachian-trail-stabbing
  
  https://www.runnersworld.com/news/a28677255/jeannie-rice-half-marathon-age-group-world-record/
  
  
  THE GODFATHER OF LYME:
  
  
  Dr. Joseph Burrascano
  
  https://vimeo.com/306846706
  
  https://www.lymedisease.org/history-lyme-disease-burrascano/
  
  https://holisticprimarycare.net/topics/topics-a-g/chronic-disease/1184-shape-shifters-hidden-accomplices-a-natures-dirty-needles-confronting-the-challenges-of-lyme-disease-sp-858975690.html
  
  https://lymediseaseassociation.org/about-lyme/medical/treatment-guidelines/
  
  Dr Horowitz
  
  https://vimeo.com/channels/ldnresearchtrust/359020273
  
  says Lyme can be transmitted from mother to fetus
  
  “Lyme causes psych symptoms”
  
  Dr Armin Schwarzbach - German Lyme specialist at Armin Labs
  
  https://vimeo.com/channels/ldnresearchtrust/113603875
  
  He says “Multiple Sclerosis is just a collection of symptoms, and Lyme bacteria can be the cause of it.”

> L-ornithine

Wow thank you for the fast reply and advice. So no wirey, partially awake nights anymore? Hopefully?

Edit: Also do you recommend I buy this one of 250 grams or this one of 500 mg (I would have to take a lot of them to reach 3000 mg)

Edit 2: Nevermind the 500 mg is actually a 1,500 mg dose :)

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

Look up Nutramedix on amazon. Very inexpensive relative to other treatments and many have told me they've seen good improvement with their products. I'm starting treatment with them today and am very excited. They say to only have one drop initially because the Herxheimer reaction is very strong for these meds.

See:
banderol

samento

pinella

bur bur

There was a Russian doctor who made the case the fiber in our diets isn't the panacea it's been made out to be and wrote a book. I haven't read it, but have read some of his online comments and he makes some good points. I think the fiber = good thing simply got popularized without much scrutiny as these things often do and the media took off with it. My diet is high in fats (butter especially), animal fats in particular, eggs, fish, meat and veggies with some carbs and almost no sugars. My weight is proportional to my height with a BMI of 24.4.

https://www.amazon.com/Fiber-Menace-Constipation-Hemorrhoids-Ulcerative/dp/0970679645

yeah, im also on an antifungal which is helping so far.

Diet change was the most drastic first step to feeling better. Cut all sugar including most fruit/commercial dairy/and most carbs. Sounds hard, but considering the alternatives, it is not. I believe a different approach may be needed for women, however, as there are hormonal complications and different diet needs.

Secondly ,get a FIR sauna. I got this one on amazon for $200 and it offers amazing relief to my joint and acute nerve pain. Also helped my wife with her sciatica:

oh and one of those massagers helps a lot for me at least too. I have extremely tight muscles and inflamed joints.

Looks like Methyl protect has a lot of B Vitamins, which can definitely give those symptoms. My doc put me on these...

https://www.amazon.com/Pure-Encapsulations-N-Multivitamin-Hypoallergenic/dp/B00CBYG1L0

I’ve never tried kratom.. maybe I should look into it. I do take stevia daily though. My favorite is the SweetLeaf vanilla creme one: SweetLeaf Sweet Drops Liquid Stevia Sweetener, Vanilla Creme, 2 Ounce

Check out What About ME?, it's an excellent documentary on CFS.

It could be that you're still in "sleep mode" when you wake up in the middle of the night, and your mindbody is dissociated from your aches and pains...

i.e. you haven't "turned on" yet, and so your psychosomatic pain menagerie hasn't paraded into consciousness like it does when the sun breaks over the horizon. Body chemical communication and all that.

---

QUESTION: Have you been treated with antibiotics? Are body aches one of your most constant issues?

(The below is a promotional advertisement. That said, the only thing I have to gain from this is a potential additional guinea pig other than myself to see what happens when this is introduced into a daily diet against treating Lyme Arthritis.)

I may have discovered an intriguing and incredibly simple treatment today. Recent studies have shown that Lyme bacteria shed their membranes while growing and replicating... and that these membranes stick around in the joints for a long time.. and these may be what causes persistent inflammation after a Lyme infection.

There is an easily obtainable over the counter way to potentially reduce the inflammation caused by this. It is called Glycine and it is commonly used and available (you can buy it at any decent vitamin/supplement store, or in bulk on Amazon), and the body handles it very well.

I'm going to be taking approximately 30g per day.

See also:

• Borrelia burgdorferi peptidoglycan is a persistent antigen in patients with Lyme arthritis
  
  
• https://examine.com/supplements/glycine/
  
  I have one additional ingredient that I am looking into further that I may use as a supplement to Glycine, but I need to do further research: Lysozyme (found in saliva, tears, human breast milk, and egg whites..... I'm looking into the egg whites option haha). It breaks down peptidoglycans.
  
  ---
  
  I had to share that info with someone. You're the first!
  
  *edit: It should be added that this is counter to the persistent-infection narrative that is the main squeeze of this subreddit. I have been traveling down a different wormhole-- trying to navigate "mainstream" science for answers. We'll see how it goes.

Why couldn't you have just bought one like this?

https://www.amazon.com/dp/B01GV4O37E/

Check out burbur detox I would say it helps me and a ton of people swear by it

Here is the mobile version of your link