Another question for people who have seen Dr J

PeppermintTea said...

Girlie said...

PeppermintTea said...
Something we do here is we have our son take Flagyl on the weekends instead of school days. So his med week is Wed-Sunday instead of the typical Monday -Friday. He would rather feel off on the weekends rather than feel badly at school. Just a thought.

Do you just do that on your own (change the schedule) or do you have the NP’S approval?

We do it on our own, Girlie. I didn't ask for approval. I just make sure to stick to the same schedule each week.

I do a few minor changes sometimes too.

After my dapsone/daraprim week - I’m supposed to do three meds on the M/T/W after finishing the d and d on the Friday before.

I can’t do it - I end up postponing it a few days - it takes me awhile to recover from that d and d week.

I had called the clinic after my bad reaction on cycle 2 of these meds and said there was no way I could take the week 2 meds starting Monday. They said it was fine to postpone them - in fact that cycle I postponed them for a week .
It works out because it’s a 4 week cycle and weeks 3 and 4 are flexible - I just take one med for five days anytime in that two week span.

There was no way I could take them the Monday after the Persisters. I had come very close to going to the ER dept.

Kentucky - Fingers crossed Flagyl won't cause you too much trouble. For me, I make sure to take it 1-2 hours before I have to go somewhere. I feel it for about an hour and then the feeling passes.

When in the protocol does Dr J add in his xylitol/lactoferrin biofilm protocol?

Girlie said...

Aerose91 said...
When in the protocol does Dr J add in his xylitol/lactoferrin biofilm protocol?

It’s when he does the Babesia protocol.
I think it’s called the “kill zone”

As in, to increase speed and rate of killing?

physedgirl09 said...
Aerose, im on the xylitol/lactofferin protocol now... i started the clinic in April.. i see RM (i love her). From April til june i was on a stabilization protocol...in June they started me on Babesia (instead of mepron i take malerone for insurance purposes)... im on double the dose of malerone (8 pills 3x a week for 2 weeks). i also take ceftin, Mino, Artemesia, cryptolepsis and enula on the med days... i take tindimax and diflucan thur/fri of week 1.
i do 2 weeks on 2 weeks off.

I go back to the clinic January 25... so we shall see whats next... whatever it is.. im ready for it!!

Cool, are you seeing any benefits on the protocol?

Did they start you on the xylitol/lactoferrin at the same time as the babesia med.s? I've actually taken lactoferrin/xylitol before and don't recall any success with it but it was during Buhner's protocol

I think I did a couple months of Babesia protocol without the biofilm busters (xylitol/lacto) and it was 2 weeks of M/W/F - mepron plus 2 abx.

Then following that protocol when I took the mepron 5 days consecutively that they had me take the xylitol/lacto.
I'll have to check my old protocols...seems like a long time ago!

I think kill zone means it's a powerful protocol of killing the b--ggers.

Aerose91 said...
Girlie- how long have you been at Dr J's now, and have you made progress? I feel like it hasn't been too too long if I'm not mistaken

It doesn't seem as long as it's been. But it has been 9 months.

I have made some progress...yes. I'm not waking up sweating in the morning anymore.....(except on a rare occasion)
I don't have the sore neck anymore. It used to come on in the evenings when I was watching tv....Just the left side of my neck.
The shivers are not hitting me in the morning when I wake up. I hated waking up that way.

I'd have to check my symptom list - there may be a few more.


I'm not having the moments of despair as much....very rarely now. I used to disappear and my husband would find me upstairs in the bedroom crying.... he is so relieved about that...He's a 'fixer'....and thinks he has to have the answer...but of course he doesn't with lyme...so it frustrates him when he can't 'fix' what's going on with me.


What I'm still stuck with:
- My upper left side - back , left arm and hand - nerve pain;
- POTS
-head pressure (not as bad though),
- slightly sore feet in the mornings (bart?),
- occasional left rib pain,
- memory/cognitive issues (much better),
- random shivers - usually provoked by emotions...ie a song I really like,

maybe a few more I'm not thinking of...

Rikky - I find the MTW meds following the Mon thru Friday persisters really, really difficult to take.

I've had to postpone them a couple of times. After my really bad reaction of the persisters...I took the entire next week off (Dr. J is aware) and started them on week 3 instead of week 2...and another time I didn't start them until Wednesday of week 2.

I still don't understand how come the dosages are the same for all adults. I mean - a 125 lb woman takes the same meds as a 250 lb man - it's gotta be more difficult for the woman.

I'm sorry to hear that you wife is still struggling....that is so frustrating for her (and you).

Question guys, it’s being insisted to me that I take the gabapentin for pain and “stabilizing” I asked to skip this protocol and bring antibiotics and received a call from a nurse today stating my doctor strongly recomends taking it? I do have neurological pain, mostly burning but if that was my only issue I’d be flying! A nurse is supposed to be calling me back, when she does I plan to tell her I’ve decided to not take it. Could they completely stop treating me if I refuse to take the gabapentin? I think it’s a little rediculous that it’s even being pushed on me as much as it already has.. and it’s coming full circle now. I remember signing a form about being subject to random drug testing while being treated there.. makes sense now.. I’m sure they’ll do it just to make sure I’m taking everything.. don’t get what the big deal is about not wanting to take that junk.

I didn’t get improvement from it - so Dr J prescribed lyrica.

I haven’t taken it yet.

They haven’t asked and I haven’t volunteered that info yet.

That is probably what I will do. They also prescribed me trileptal? I see it’s a mood stabilizer. I have anxiety and I’ll never deny that.. but I am not suicidal, I don’t have mood swings.. I’m not sure why they want me to take that. Wellbutrin makes the mental part of all this bearable, if anything I’d like to up that. But with everything they want me to jump on there is no way I could function.. Gabapentin, trileptal, AND they want me to take vistaril as needed... just annoys me, thanks though girlie.. I’ll give the 300mg of gabapentin a try.. but to me it just doesn’t make sense. I know part of treatment would involve being comfortable and in less pain, but I want to know if my hands and feet are burning, masking my pain won’t make me better. I want to know when the burning actually stops for good, be it when the infection is gone or the aftermath of inflammation. Not interested in a quick fix.. I don’t care how long it will take, I want to see progress on a good clean diet and a good ABX regimen.

I’ll also add this, I am from eastern Kentucky.. one of the most poverty stricken areas in the United States. I have many many family members and friends who have been sucked into the addiction world, some by prescription pad and some by recreational use. I have a good head on my shoulders, I think if I really needed it I would take it no question, and I believe I would take something like that responsibly but I do know many people who abuse gabapentin.

According to Dr. J . the removal or dampening of pain DOES influence your healing. He wants all issues to be taken care of - ie sleep, anxiety, depression, pain...etc.
He says the immune system doesn't work well if you have issues - like pain.

That's the reason.

So, basically, he believes your immune system doesn't function well when you aren't taking care of the basics...ie pain, sleep, depression, anxiety...etc.

You shouldn't be getting 'high' off the Gabapentin...it never affected my mood whatsoever ...so I wasn't worried about becoming addicted to it.
You do have to wean off of it.

WBF - in case Rikky doesn't see this - his wife has treated Babesia.
Dr. J treats babesia early on.


Hopefully Rikky will be back here to elaborate.