Reddit reviews Believe Me: My Battle with the Invisible Disability of Lyme Disease

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.”