I recently posted my treatment protocol and asked for you folks to share with me your protocol, and here are some of the responses I got! I appreciate those who took the time to do this, as I am sure many of you Lymies are curious as to what everyone else is doing for a protocol. If you read, you can tell everyone is different. And that’s okay!
There is no “set” treatment for Lyme as we are all very different. Some are new to this and some have been battling this disease for years. As you can see, a lot of us utilize supportive supplements or are on neurotropics as well.
There are also different purposes for different medications I should note. What would be an anxiety medication for one, may help calm seizure activity or help aid sleep in others. Some of these people are fortunate to have an LLMD in their state, but many travel very far to get the care they need.
This is a no judgement zone, folks! Just sharing your stories and what you are doing to fight this disease. We are all different and an interesting read for sure!
Cymbalta – bedtime, 60 mg
Gabapentin – 300mg, 3 x day
Amour Thyroid – 30 mg daily
Cortef – 1 tab 2x day
Trileptal – 150 mg 2 x day
Centrum Silver Women Over 50 – 1 tablet daily
Slow Niacin – 500 mg daily
Antibiotics: Ceftin – 500 mg 1 x daily week one, 2x daily week 2, Week 3 start Azithromycin, 250 mg daily one week, then 2 x day, Week 4 start Plaquenil 200 mg 1 x day, then 2 x day
On for 6 months, 4 months only on Zithro and supplements
Supplements: L-Carnitine, Norwegian Salmon Oil/Omega 3, Magnesium Malate, Cat’s Claw, Kyo Chlorella, Resveratrol Japanese Knotwood, Active Charcoal, Milk Thistle, Turmeric Curcumin, ALA, CoQ10, Nattokinase (NattoMax), Saccaromyces boulardii, NAC, Oil of Oregano, 5-HTP, Melatonin, Echinacea as needed, Super Cleanse for detox as needed
Cymbalta – 2 x day, Ativan – 3 x day, Lyrica – 2 x day, Zyretec – 1 x day, Gabapentin – 2 x day, Mobic – 2 x day ,Trazadone – 1 x day,Vyvanse – 1 x day, Diflucan
Week one: M-Sat Other: Lactoferrin, Xylitol, 1 x day, M-F Septra DS 2 x day, Daraprim 1 x day, Other: Leucovorin 1 x day M,W,F – Meropenum IV 1 x day, IV Tigacycline, 1 x day, Rifabutin 2 x day Th, Fri – Flagyl
Week 2 – Sun-Th IV Meropenum 2 x day, IV Cipro 1 x day, IV Tigacycline 1 x day Other: Lactoferrun 1 x daym Xylitol 1 x day
Week 3 – Oral coartim 2 x day M-W
Week 4 – Oral Minocin 2 x day, T, Th
Week 5 – T, Th Minocin 2 x day
Supplements: 5MTHF, b12 injections, CoQ10, Cranberry Powder, Fish Oil, L-Carnitine, Magnesium Malate, Multivitamin, Probiotics, Saccharomyces boulardii, Vitamin D
Antibiotics: Was taking 100 mg doxy, 2 x day, now 1g IV rocephin daily
Diflucan, Neurontin, high dose Lamictal, Ativan 3 x day, Xanax, Klonopin, Seroquel, Seroquel time release, Clonodine, Diamox, Abilify, Cortef ,Vicodin and Norco for pain, and a new pain script she does not know the name of yet
Antibiotics: 12 Week Cycle, 3 weeks on, 2.5 weeks off.
Week 1 – Days 1-8 Lactoferrin and Xylitol, M-F Omnicef, Rifabutin, Septra, Artimisinin, Mepron. Th + Fri add Flagyl
Weeks 2 +3 – Week 2, M-W Omnicef and Cipro Week 3, Add Coertem, away from all antibiotics
4-6.5 Weeks – Minocin and Rifabutin M-F
Then repeat it all again!
Supplements: Niacin, Fish Oil, high dose Vitamin C, Klor-con (prescription potassium), DHEA, CoQ10, L-Carnitine, Magnesium Malate, ALA, Vit D 3, All taken with Almond Milk
A.C. is having a different protocol than what she is use to, as her LLMD decided this was what was best for her at this time. Despite the far travel to see her LLMD, aggressive protocols, Lyme, and multiple co-infections, all while being a mother and an Executive Gold Ava Anderson Rep, she has been working her butt off to self publish a book based off her blog when she was at the most aggressive part of her protocol. “A Twist of Lyme: Battling a Disease that “Doesn’t Exist”” is due to come out in about 4 weeks, so keep on the lookout! It will be a great read for the Lyme community and non-Lymies alike. Check out her website for more information: http://twistoflymebook.blogspot.com
T.P. , NH
Antibiotics: 1500 mg Amoxocillin 2 x day, 100 mg Minocycline 2 x day, 500 mg Flagyl 2 x day.
Supplements: high dose vitamin C, cat’s claw, B12, magnesium, D3, multi complete, super B complex, 20 billion CFU probiotic.
J.B. , California
Antibiotics: Samento and Banderol
Supplements: whole food based multivitamin, molecularly distilled fish oil, ALA, NAC, CoQ10, CalMag, Taurine, Probiotics, Phytosopherline, milk thistle, Merivia, Vitamin C, Glutathione, wants to add when seeing LLMD next appointment Serrapeptase, Boulake, Parsley, Pinella, Burbur.
J.B. also does a variety of things from detoxing to lifestyle changes to make his journey a little bit easier for him. He also has a blog, here is the link if you would like to check it out! http://creatingreality1.wordpress.com
Currently awaiting an appointment for an LLMD, her experience has been so far, 100 mg doxy, twice daily for 3 months with one week of Flgyl, 500 mg, 3 x day as a pulse. Doing lots of detoxing now while she is waiting. Wishing you luck!
Antibiotics: Was doing 2 gm IV Rocephin, 2 x day for 3 months along with Coartem, Rifampin, Plaquenil, and Zithrom and 1,000 mg Tindamax a day every other week. Currently takes Omnicef, Zithro, Rifampin, Meprin, Plaquenil, and 1,000 mg Tindamax a day every other week along with other supportive supplements. She has Bartonella, Babs, and Lyme. Says Lyme is pretty much gone. Keep fighting! Good to hear of a protocol that is working for someone!
As you can see, many similarities, many differences. Thanks again to you all who were willing to share your protocol with me. Good luck with your protocols, everyone!