Update on Dr. J DC appt

How are you feeling? Any change?

Sounds like he is working out super good for you. That is so awesome.

Yes I'm seeing Dr. J but you have to be a chronic case and go through an NP/PA first to get to him (if you even can).

My progress is slow cause I don't think my symptoms are being caused by Babesia but something else. Dr. J says we have to clear Babesia before we go after anything else. So i'll be doing 8 months of treatment before seeing him again.

I might add Sida and Alchornea to the Cryptolepis to give the babesia another couple of punches hopefully to the gut!

Anyone has a data of the amount of lactoferrin taken and pulsing strategy as per Dr J. protocol?

And what kind of lactoferrin is usually taken - apo or mono form..

Girlie, I'am also taking it but for me it kicks in 2..3 days after each dosage, so i pulse it like every 4 days and respect it as it is an antibiotic. I think its mostly anti infl. with more frequent dosing..

I think it cracks biofilms in my poor brain, working as a chelator - see this research from Eva Sapi:
www.newhaven.edu/_resources/documents/academics/surf/past-projects/2014/dylan-haenel-paper.pdf

Since Dr. J. likes to pulse his antibiotics i'am wondering if he instructs to pulse Lactoferrin too.. Any info from Dr J. patient would be greatly appreciated. Thanks.

Ty Rikky.

I've used 600mg apo lactoferrin together with minocycline and got a severe brain herx at 3-rd day: lots of neuro disorders and neurological pains in different spots in head. I believe they are both chelators, i.e. lactoferrin chelates iron and manganese from biofilms while minocycline chelates calcium and iron.

So i've basically went crazy for the whole day but at the end got a feeling of killing bugs at a 10x speed out of the normal abx template.

Busting biofilms at the start of every abx cycle is an interesting strategy: like resting from abx and at the same time helping immune system to reach bugs by cracking bacteria aggregates while avoiding overlapping of Lactoferrin with antibiotics.

Rikky, interesting, so Dr. J. prefers to avoid using the 1 week off all abx strategy(pulsing) at the early months of the treatment?

This makes sense - just too many low hanging pathogens and the immune system is bug-suppressed anyway...

By the way, if azithro is in its technically not even a holiday, since this drug stay in tissues for weeks...

Glad you had your appt Rikky1. Very interesting to read what you are doing and compare it to what DS has done. What it shows me is that they continue to mix it up in different combos for different patients. Also DS may have a bit different protocol since he's a teen and not considered an adult.

They really do listen to what your current issues are and adjust for that - continuous improvement. Most patients do seem to need to re-hit various infections for a few months. Babesia re-hits seem pretty common. Breathing and fatigue are the two symptoms left for DS but fatigue has pretty much gone away and hits of albuterol for breathing have been much less this summer - yeah!!

DS has been treating for 1.5 years and is greatly improved, particularly in the summer. He is now starting a 2 weeks on, 2 weeks off cycle (had to stop that for awhile because of reinfection with myco and re-treatment of babesia). The goal is maintenance before long but we'll have to see how he does this fall when school re-starts.

DS has always had 1 week off except for the last cycle as we were trying to re-hit babesia but that ended up being for only 1 cycle of no breaks. The way it was explained was 1) it gives the body a break and 2) allows the immune system to eventually start taking over since it has been suppressed by the Lyme. I will say that the first 6 months were awful and also that DS was always asking during the 1 week break when he was going back on by the end of that week because he felt awful - even though he was so sick while on them too. It's been at least 9-12 months since he's asked that. For quite some time he's felt the same off and on meds - pretty good - that's how we measure progress and now we are trying to measure it with more weeks off.


JC has worked well so far for DS. I'm now hoping to add in some herbs as we hopefully are hitting the final stretch. As far as seeing Dr. J - we were told Dr. J doesn't meet pediatric patients so we see a NP and it's been fine - they consult with Dr. J and among themselves and it hasn't been a problem for us but it may be for others.

Yes, basically but not exactly (because of reinfection of myco last winter, his feeling of subsequent stagnation the next cycles over the spring, and resulting decision to re-treat another infection earlier this summer which was a completely new number of weeks on/off and then a trip where I had to have him take an unscheduled week off rather than continue without a break). He has done many combos of weeks on/off. Mainly 3-4 weeks on before a 1 week break.

He is now trying a second cycle of 2 weeks on/2 off after having completed 1 last month where he felt the same on and off and had no symptoms during those 4 weeks. If he can complete this cycle and one more without symptoms, he moves to 2 on/3 off - sorry for the confusion - I just decided to look at his current protocol. Eventually the goal is 1 on/3 off for maintenance. Confusing I know!

I wonder if Dr J. considers lactoferrin as being a safer alternative to azoles.

I dont like that some neurotoxic effects are believed to be associated with metronidazole. So it could be potentially difficult to distinguish between the effect of a die-off and the side effect of the drug itself.

New study showing the safety of Lactoferrin even in mega doses(used to prevent sepsis in infants):
/www.ncbi.nlm.nih.gov/pubmed/25973934

Also, antimicrobial effects of lactoferrin on Borrelia burgdorferi biofilms:
www.newhaven.edu/_resources/documents/academics/surf/past-projects/2014/dylan-haenel-paper.pdf

Thoughts?

Post Edited (Dmitry) : 8/14/2017 2:53:49 AM (GMT-6)