Have any experience with Lactoferrin / Xylitol / Pyrimethamine / Leucovorin / Dapsone/ Rifabutin

Get a calendar and write every day's dose down for each day. That is the only way you can keep up with it all.

Thanks for the replies, Georgia and MarieLS. I have just begun to research these drugs and am combing the forum for additional information. I'm grateful that my doctor includes supportive supplements in my protocol, and lactoferrin sounds beneficial.

Yelloworange my doctor put me on the xylitol/Lactoferrin titration get up Monday- Friday, then the second week I was suppose to do the Coartem for 3 days but it cost $93 with my insurance so I didn't do it. Didn't really feel much on the xylitol/lactoferrin except some fatigue around day 4 and a headache/leg aches. Keep us posted on how you did and how much that Coartem cost for you.

I am on almost the exact same protocol after 8 months of treatment. On Friday of the first week of the round and it has been the worst week of treatment yet. Basically feels like you have the flu. But I take this as a good sign since it must be killing the stuff. Only heard about herxing and think I had a little on last protocol when Enula and Xylitol were introduced. They say worse before better and I hope this is it. Had symtoms over 20 years until finally tested and diagnosed in 2014!! Ready to turn the corner.

Xylitol is a sugar alcohol derived from hardwoods (the best is birch tree) but is found in low concentrations in most fruit. It's a good low glycemic sugar substitute. But it is also used as a good biofilm buster, and a y/f preventer (it prohibits yeast from digesting sugars). And note that it is toxic to dogs.

p

No fluoroquinolones (Levaquin, Cipro, Tequin, Avelox, etc.) These drugs can cause the same symptoms as Lyme's disease and also causes tendon ruptures. My LLMD states he would never use these antibiotics. I was floxed (horrid symptoms) and suffered for 3 years from Levaquin.

Patty

Picture-hey there! Yes, that protocol was a game changer for me. Awful? Yes. Horrible? Yes. Thought I was dying? Yes. but...I have lost a lot of symptoms because of it. How long are you on it? I think I had three rounds of it. Right now I'm on an abx break (been on a year of abx) my LLMD does breaks to see how the body reacts. If I could just get over my fatigue and lyme induced anxiety I wouldn't be doing half bad.

Keep fighting the good fight everyone! There are days of sorrow but there are also days of LIFE. God Bless!!!

Thank you all for your input. I was asked to share my story/protocols and where I stand in treatment.

Started feeling like low blood sugar at 17 (40 years old now) and was diagnosed with hypoglycemia but went through 3 nutritionists and numerous diets which didn't help and blood sugar was never low on home monitor during episodes so that was ruled out. Had MRI's, saw nephrologist, various other specialists, and ended up with neurocardiogenic syncope but that was ruled out by 2 cardiologists esp. after nothing helped symptoms. Went on this way for numerous years and saw various GP's, homeopaths, and others who had no idea and blood work always looked o.k. Finally switched doctors last year and lyme test was run. Came back CDC positive, IGM for 2 bands (23 and 41) but no IGG. Weird since I've had issues so long but apparently Lyme can trick the body and my body has just been fighting it off since I've never been tested or had it treated I guess. CD57 level was tested later by LLMD and was 33 and Mycoplasma was positive. FINALLY and answer!!! So started treatment August 2014. Symptoms were hypoglycemic feeling almost constantly, CONSTANT lightheadedness, fogheaded, constant knee and leg pain, tightness in upper back, extreme tiredness/fatigue, general muscle weakness and also have glaucoma and run constant high eye pressures (not sure it is related but I don't tolerate most eye drops for glaucoma which is weird).

So started lyme treatment which originally was through GP and was Doxy for 2 weeks which did nothing although felt a little worse toward the end. Then went to LLMD and started probiotics after testing and before adding abx. Don't remember exact but have been pulsed on Minocycline, Omnicef, Septra, Mepron, Flagyl, Diflucan, Artemisinin, Coartem, Xylitol, Lactoferrin, Cipro, Enula, and now on Draprim, Rifabutin, Leucovorin and a lot of vitamins, supplements, etc. of course taken the appropriate times away from abx or other interacting meds. After 8 months I have seen subtle changes for the better, including less fatigue, don't get the pronounced hypoglycemic feeling, feel a little stronger, not quite as "out of it" but still feel a ways to go. The new Daraprim round as mentioned really hit me and I'm hoping after reading these helpful posts that I'll see a turn around soon. I do 3 weeks on various abx/etc. and then one week off. So hoping this is my turning point finally and I see some hope after reading these and the Daraprim and Rifabutin messages.

Thanks and sorry for a long post and sorry if I posted this in the wrong place.