your thoughts on niece's (Ontario) new LLMD protocol? aggressive enough?

Hi everyone,
Panicked aunt is back.

Here's a quick update on my niece's LLMD appt. (Dr. P in Buffalo) today.

Please post your thoughts? Mine are mixed . . .

H got a bad bite around Aug. 3. Started 200 (X2) doxy Aug 21 and seems to be herxing badly. But she had symptoms within a week of bite and Dr. P commented today that there is much CNS involvement.

(MANY symptoms: headache, neck pain, joint pain, memory issues, terrible insomnia, and today she said she gets sort of blurry vision, finds lights too bright, now bartonella stretch marks -- and this is not all the symptoms! VERY distressing.)

In addition to some detox remedies and some probiotics,
the plan for 30 days is:
- doxy (100 mg) 2x2 (400mg per day)
- Azithromycin (250 mg) (only one per day -- total 250mg) - isn't this low?
- flagyl (250 mg) 1X2 (500mg per day) ONLY on Sat. and Sunday
- nystatin (500,000) 2 x3 (6 per day)

I should also add that I went with H and her parents to help with questions. I have had lyme for 3 years and treated it VERY aggressively with orals for 18 months, followed by herbals. (VERY lucky to be under care of Dr. H -- but his waiting list is now at 800) I am at 90-95%, but to be honest, I feel like I am slipping lately . . .

When I tried to ask the doctor if this protocol would address all 3 forms of lyme she said yes (she said the zithro covers cell wall and intracellular) Is this enough?

Also, she got testy with me when I asked if this was aggressive enough and told me that "a little knowledge is dangerous" . . .

Also, Hannah did not take enough probiotics when she started the doxy (though I told her!!) and so she has some diarrhea, in addition to a yeast infection (which seems under control now) She has gotten the probiotics and diet memo now!!

Dr. P said she is trying to "build something" and does not want H to crash and burn . . . In other words, I should shut up!

But -- she did say by the end of appt. -- that with all the CNS involvement, we should discuss IV options in a month.

What do you think?

Technically this is still an early bite. Dr. P said it was "early disseminated" . . .

Is this aggressive enough for now? I REALLY want to do everything I humanly can (with prayer too!) to try to keep this from being a long battle for this lovely girl.

Dr P. "predicted" 3-6 months . . .

It looks like this wonderful girl could miss some of all of her fall semester at university . . .

Thanks so much!
T

I just looked up Dr. Burrascano's Lyme Treatment Guidelines - and the dose of zithromax for adolescents is 250-500 mg per day...

You really, really need to start low and slow. Herxing isn't just an indication of die-off, it is an indication of severe systemic inflammation (including the brain) which isn't good for anyone.

The flagyl is really going to hit her on the weekends, and she will feel pretty bad for the next couple of days. K was prescribed tindamax and couldn't recover from the herxing while continuing with other abx (azithromycin, minocycline) through the week. We ended up having to pulse everything for 3 days with 4 days off to recover.

To me this seems aggressive enough. If she has a high bacterial load there will be plenty of die-off.

K started with simply biaxin for a couple of weeks before the bartonella abx were added in.

Zithro has a long half life, as has been mentioned. That's why when you get a Z pack for an ordinary infection, they only give 5 days. Should be OK.

Thanks everyone, this is invaluable! I am mindful that I can't let my own anxieties (and experience) get in the way of doing what is truly best for H. And I am not the parent . . .

Girlie,
YES -- we are on detox file! But more is better.
I do hope the 250 Azith is sufficient - the half life info is interesting . .
Dr. H calls for 250X2.


CD3764, YES -- she has the memo re diet! I know its radical for a 20 year old, but she seems to be taking it seriously.

Rowingmom, Thank you for the perspective. It is especially helpful given your experience with Dr. P. Again, I am just afraid that a certain window (for keeping these infections from digging deeper into her) will be missed. But I have to remember that she is already on things, so hopefully there will be no (or little) "advance" of the infections -- and "only" herx? Is that a reasonable thing to think?

I have seen some truly horrifying cases of young people in my lyme journey. And I am sure my perspective is coloured by my own experience with Dr. H -- he may be the most aggressive there is . . .

And I know that H's response to various things will help in diagnosis. But thanks for reminding me!!

And Sarahm620, yes, it has a long half life -- I really hope it does the trick.

Dancingbear, I actually forgot to mention that Dr. P also put H on diflucan (100 mg) 3 X week. I know there can be bad die off. In my own experience, molybdenum helps with to clear the aldehyde. (Jernigan trick)

and now for today's questions for the experts!:

1) Speaking of diflucan, I assume its OK to take at same time as antibiotics?

2) And should it be taken with food?

3) Interesting, H is feeling sooo nauseous on the doxy she has asked about IV abx. I know some just can't handle it! At the end of the meeting yesterday, Dr. P said the IV possibility should be discussed in one month. (Dr. P said she was worried about all the CNS symptoms) Now my sister is wondering if she should call the office and ask if H could move to this option sooner. I know she would still have to take some oral abx, but it would be easier on the stomach and H would be assured of more penetration of the drug. What do you all think?

Again, thank you! and for the Canadians, merci!
T.

Yes Diflucan can be taken with abx, but she surely has systemic yeast, there for there will be that die off in addition to the Lyme die off. This could be brutal! Double die off, yikes. Detox, detox, detox. For me, the Infrared Sauna was the best, but I am not sure if that would be too much for her at this time.

She is probably doing this, but when I first went on abx I was so sick in the stomach and had that yuck feeling. I was told by a dentist (who prescribes abx a lot) to take the abx towards the end of the meal. Get a lot of food in there first. That really helped! Billy is taking the doxy and he feels the "abx feeling" more if he does not get enough water.

She is on a lot of stuff now so I am not sure about the IV abx. Billy did do that for 5 days and still had that yuck "abx" feeling in his stomach so I am not sure it would alleviate that feeling. She should let the doc know what is going on, but I think you should give it time before switching.

Also, When I started the Nystatin I felt so gross in the stomach. So yuck! and I was not on anything else at the time. I am sure she has yeast overgrowth in the GI. She is definitely having die off from that. That should not last that long. Maybe a week or less.

At this point it would be hard to tell what is causing what.

She will get better!! I believe it.

So great to hear she's started proper treatment and it sounds like she's on the right path. Best of luck and prayers for a full recovery. It will be a tough ride but she is so blessed to have a caring, dedicated aunt to steer her through this journey :)