Update on Dr. J DC appt

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Rikky1
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   Posted 8/11/2017 1:03 PM (GMT -7)   
I write these hoping it helps others so feel free to ask questions.

Completed 5 months of J's Babesia protocol. On the most aggressive one with biofilm busters, 2 abx, mepron, and 2 herbs (art and enula). He feels my spleen and liver and says you aren't done clearing Babesia yet. He said most of his patients clear Babesia in 4 months but not me cause I'm special! Says everyone is different so no point comparing yourself to anyone with these things as so many factors go into how well you make progress (or don't).

The other factor worth mentioning is with his pulsing protocol the idea is to feel better on your off abx weeks cause that means your immune system has taken the mantle from the meds and is doing a good job. If you are getting symptoms during these 'off'' periods your immune system is agitated and not ready to assume full control.

So on the same protocol + Cryptolepis for another 3 months. When I get the pathogen load down enough we're going to switch over to a modified protocol to go more directly after Bartonella and any persisters.

Seems Dr. J feels that if you treat Babesia long and hard enough + make sure the few abx's you're on have some coverage for other co-infections (e.g. bartonella, mycoplasma) the protocol + your immune system will do most of the heavy lifting then you clean up after. That's the theory at least.

k07
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Date Joined Sep 2015
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   Posted 8/11/2017 1:57 PM (GMT -7)   
How are you feeling? Any change?

Sheeks175
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Date Joined May 2016
Total Posts : 180
   Posted 8/11/2017 2:40 PM (GMT -7)   
Thanks for the update Rikky. Are you seeing Dr. J himself? I have been looking for a new doctor for the last few weeks and I am still trying to pull the trigger. Would you recommend him? I heard good things about his PA K.F. as well.

How is he measuring your spleen and liver reaction to the babesia protocol?

PeteZa
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Date Joined Jul 2015
Total Posts : 9211
   Posted 8/11/2017 2:44 PM (GMT -7)   
Sounds like he is working out super good for you. That is so awesome.
____________

Good Article

sebreg
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Date Joined Jun 2015
Total Posts : 773
   Posted 8/11/2017 2:48 PM (GMT -7)   
Very awesome! thanks so much for the update. It's nice to hear the strategy and vision he is employing.

How do you feel with your progress?

I think he is right when it comes to comparing oneself to others. A lot of these cases are their own unique puzzles representing different iterations of the same phenomenon. It's amazing the diversity and scope and variation of this stuff and the kaleidoscope under which it manifests. It's been helpful for me to read about other cases, has helped me contextualize my own issues, but there are variations as well and we are all on different parts of the bell curve. So long as what you are doing is working for you that is what matters!

Rikky1
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Date Joined Jun 2015
Total Posts : 2595
   Posted 8/12/2017 9:12 AM (GMT -7)   
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!

Girlie
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Date Joined May 2014
Total Posts : 27934
   Posted 8/12/2017 10:46 AM (GMT -7)   
Thanks for the update, Rikky1 - I'm always interested in feedback from Dr. H. and Dr. J. patients.

Patience is really difficult when we've been treating for 2+ years.

But, you are with one of THE best LLMD's there is. (Can you tell I'm envious?)


Progress may be slow..but you'll get there.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dmitry
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Date Joined Feb 2017
Total Posts : 34
   Posted 8/12/2017 11:24 AM (GMT -7)   
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
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Date Joined May 2014
Total Posts : 27934
   Posted 8/12/2017 12:01 PM (GMT -7)   
I take Jarrow Lactoferrin - with Xylitol. I didn't know there was an apo and mono form.

Dr. J. has patients take both together...you can find this info on the 'net'.

I take 500 mg of Lactoferrin with 2 tsp of xylitol.

Here's a thread on them:

www.healingwell.com/community/default.aspx?f=30&m=3232971


and another thread with lacto/xylitol used for biofilms

www.healingwell.com/community/default.aspx?f=30&m=3816263
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 8/12/2017 1:06:22 PM (GMT-6)


Dmitry
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Date Joined Feb 2017
Total Posts : 34
   Posted 8/12/2017 12:56 PM (GMT -7)   
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.

Rikky1
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Date Joined Jun 2015
Total Posts : 2595
   Posted 8/12/2017 1:20 PM (GMT -7)   
Dr. J typically has his patients on the first week of every "cycle" as he calls it doing biofilm busting. He uses Xylitol and Lactoferrin 7 consecutive days. For just starting out 1tsp Xylitol / 250mg Lactoferrin the more aggressive dosage is 3tsp Xylitol / 500mg Lactoferrin.

This combo has been in use a long time and known to be a biofilm busting combo. There are others depending on the LLMD you see.

Dr. J told me it usually takes 3 cycles of this to really melt the biofilms. I've been doing them for 6 cycles and have 3 more to go before I see him again.

Dmitry
Regular Member


Date Joined Feb 2017
Total Posts : 34
   Posted 8/12/2017 2:14 PM (GMT -7)   
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.

Rikky1
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Date Joined Jun 2015
Total Posts : 2595
   Posted 8/12/2017 4:25 PM (GMT -7)   
Dmitry just to be clear the way a cycle works is you take abx typically MWF the first week and then 5 consecutive days the second week. During the first week you also take the biofilm busters so you are taking them concurrently with abx. This is necessary because you need to break open the biofilms so the abx/immune system can get at the newly exposed bugs.

Yes both minocycline (which has very good blood brain barrier penetration) and lactoferrin are good chelators and anti-microbials. The biofilm situation in terms of how serious it is varies by the individual. One thing is certain you must melt biofilms if there is any chance at long term healing.

Where persisters come into play is not known what is known is lyme and bartonella are both persister bugs which is 2 of the 3 B's we all seem to get. What we don't know is exactly what drugs like dapsone and PZA are doing to help against these sub-populations. I guess as long as they work who cares.

Post Edited (Rikky1) : 8/12/2017 5:29:32 PM (GMT-6)


Dmitry
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Date Joined Feb 2017
Total Posts : 34
   Posted 8/13/2017 2:58 AM (GMT -7)   
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...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27934
   Posted 8/13/2017 9:15 AM (GMT -7)   
No - even in the beginning you take a drug "holiday"

It's either one week or two off depending on where you're at.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dmitry
Regular Member


Date Joined Feb 2017
Total Posts : 34
   Posted 8/13/2017 1:06 PM (GMT -7)   
By the way, if azithro is in its technically not even a holiday, since this drug stay in tissues for weeks...

Girlie
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Date Joined May 2014
Total Posts : 27934
   Posted 8/13/2017 1:39 PM (GMT -7)   
Dmitry said...
By the way, if azithro is in its technically not even a holiday, since this drug stay in tissues for weeks...


true - but it is still lessening in the system over the two weeks - compared to continual building without a drug holiday.

There shouldn't be much in your system after the first week off.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

yancync
Regular Member


Date Joined Nov 2015
Total Posts : 488
   Posted 8/13/2017 2:55 PM (GMT -7)   
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.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Post Edited (yancync) : 8/13/2017 3:58:06 PM (GMT-6)


Girlie
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Date Joined May 2014
Total Posts : 27934
   Posted 8/13/2017 3:49 PM (GMT -7)   
Yancync - Before your son recently went on the 2 weeks on, 2 weeks off...was he doing 2 weeks on and 1 week off?


Not sure if you'll see this post..
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

yancync
Regular Member


Date Joined Nov 2015
Total Posts : 488
   Posted 8/13/2017 4:19 PM (GMT -7)   
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!
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27934
   Posted 8/13/2017 4:32 PM (GMT -7)   
I see you actually said that "DS has always had 1 week off except for the last cycle as we were trying to re-hit babesia ..."

Sorry - missed that.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Dmitry
Regular Member


Date Joined Feb 2017
Total Posts : 34
   Posted 8/14/2017 1:38 AM (GMT -7)   
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)


Girlie
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Date Joined May 2014
Total Posts : 27934
   Posted 8/14/2017 8:32 AM (GMT -7)   
Dmitry said...
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?


They're used for different forms.

Lactoferrin and xylitol is for biofilms.
Tinidazole and Flagyl for cyst form.

Dr. J prescribes both.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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