Yes Girlie from what I hear, he does. He starts with biaxin/rifampin and then switches to biaxin/rifabutin. He uses up to 600 mg rifabutin which is pretty high and treats on anywhere from 1-2 years...
I feel for you... so hard. Feels like sometimes you can throw endless amounts of money and energy at this thing and in the end it would be worth it if there’s relief. I don’t know how any dr can...
Hi Aerose. Bart has been a beast for my daughter and we’ve made the most progress with Bart treatment. It however always shocks me that it’s still there after a lot of treatment. You treated with Dr...
———- Bluelyme can you please share which brand of tea you used? Thank you!...
Thank you Lasciel for that response. Will read up a bit on it. I’m not familiar....
Thanks Girlie. I’ll check it out. 😊...
Patient166 My daughter did well with nystatin and fluconazole when she first started treatment a couple years ago. Her dr started both to tackle some yeast issues in the beginning and she did two...
Girlie, my daughter has been having yeast issues recently too. Can you share what kind of silver and how much you used? Thanks!...
Congratulations Girlie and good luck. Hope it’s a good day :)...
Ok yes thanks Girlie. I’ve put a call in to the dr. What I meant to say though is that after three days off the rifabutin, she improved at first but now feels she is declining without either the...
Thanks Girlie. Yes I remember reading you saying it was rough. I agree and am thinking I may need to pulse it. I’m concerned though, I know dr J pulses meds but since he hits extra hard on treatment...
Hoping some of you can offer some suggestions as far as adjusting/easing into rifabutin. It has been rough! My daughter has done a year of rifampin with either doxy or minocycline and has improved...
My daughter has had a picc line for about 10 months. She was very, very sick though. Severe neuro lyme and was in a wheel chair. It helped a great deal. Pain is much better and she’s completely out...
I’m happy for you Girlie. Sounds like you’ve come a long way and it’s such a tough road so congrats! But... if you’re worried about babesia, maybe talk to the dr about doing some babesia provocation...
Can she switch one med over first ? I think 150 per day of Rifabutin is a good idea - for at least a few days.[/quote] Yes Girlie, that’s the plan. Switching to minocycline first. She’s been on it...
WBF thank you for sharing all of that. Crazy isn’t it what lyme and friends can do and many of the bizarre symptoms people develop are never really explained. I guess our best hope is to treat and...
That’s crazy lol. You just never know with these things....
Ok thanks CWL. That sounds like a reasonable approach....
Maybe rosacea? I’m not super familiar so I need to read up on it. Can I ask how lupus was ruled out? Does your pain Seem to flare with the sun?...
Thanks girlie. Yes I’m a little nervous about the rifabutin switch as I’ve heard it’s harder than rifampin. She’s to take 150 mg twice a day. Any suggestions about how to ramp up? Is it reasonable to...
Hi Girlie. Yes she is switching to minocycline. And switching the rifampin to rifabutin. I really hope you’re right about the lupus resolving with treatment. Can’t find too may that have both. I...
Yes either the bart or maybe the doxy? First time I’ve ever wished for bartonella over something else. Hate to think about how one might manage something like lupus with chronic Lyme...
Thanks christianwithlyme. I think/hope you might be right about it being related to bart. Her’s too flares with sun and heat but she has neuropathy type sensations as well with it. She also recently...
Has anyone experienced a red painful nose that slightly spreads to the upper cheeks? My daughter has been in treatment for lyme, bart, and babs for almost 2 years. She’s much improved but still sick...
Glad you’re feeling good. Happy birthday!...
Yes girlie you are correct. G6PD testing necessary first....
We have yet to try it but I’ve been keeping an eye on the experiences of a few others on the babesia buddies group on FB. Looks to me as if some have had great success with it, but there are a couple...
We treated with a combination of antibiotics and herbs for about a year before switching to herbals. I was working with a practitioner who liked combining Byron white and Buhner herbs but...
Dcd good to know... not sure how long he’s planning to try it but maybe short term is ok...
Ok thanks Girlie...
Girlie, if I remember correctly, you still herx on your maintenance protocol so I would think that means you’re still dealing with infections. Hope with time, you make more gains as you whittle away...
I think the belief is that I've long treated them. I have gone after infections for like 4 years with no improvement in anything. They either have been dealt with sufficiently or just aren't the main...
Girlie She’s had an eye exam recently but I don’t think her optic nerve was specifically looked at. Is that done by dilating the eye? I need to check into this. It’s to be taken 3 days a week...
bluelyme... yes long half life bothers me too. I like to be able to just ship if needed. Don’t have access to kinesiology. Thanks...
Saraeli, this is such a hard question and I suspect why you might not have gotten more responses to your post. I’m a parent of a child that’s had lyme most of her life and may have been born with it....
Dcd, thank you that helps and actually makes sense. I’ve got major trust issues with drs and second guess pretty much every change so it’s nice to bounce questions off of you all that I didn’t know...
My daughter’s LLMD wants to add a Plaquenil pulse to my daughter’s protocol and thinks it might boost her babesia treatment. I’ve read mixed reviews on this drug and it seems that most lyme drs use...
Good luck Martin. Hope this treatment brings good things for you....
Merry Christmas and best wishes for the new year....
WBF no I don’t have an EMF shield 🤔 In fact she is a typical teen and always on her phone or tablet. I need to do more to combat yeast... I think it’s flaring probably from all the holiday cookies....
Thanks notime4lyme. Appreciate the feedback....
That’s so great that your mental clarity improved so much. I know exactly what you mean when you say it drove you up a wall. She used to love to read. I see she’s easily able to read now but at one...
Thanks for all of the feedback you guys. Lymedriven, she is on magnesium. Sara and Zimica, we’ve done a lot of antifungals both natural and prescription, binders, tested the house for mold etc... but...
Yes acid reflux is heartburn. Causes a burning/warm sensation in middle of chest that rises into throat with an acid taste....
I have no idea but my daughter had that weird burping thing. It did come and go for a while in the very beginning of treatment but did finally resolve. I feel like it has something to do with nerve...
Suramin is being looked at to treat autism and CFS. It has antipurinergic properties and works by stopping the cell danger response. Here’s a quote from the article, Sleeping Sickness Drug Naviaux...
Saraeli, we are not new to trying hockey things so I’m sure my daughter will try lol. Seriously this disease can make one willing to try just about anything. ;)...
Thanks saraeli for that detailed response. We could definitely clean up the diet more. That has been a work in progress and partly my fault. Because she’s been so sick it was hard to “break the news”...
Thanks and yes what you’re saying makes a lot of sense. Unfortunately my daughter is already on rocephin and although it has helped greatly... focus and brain fog still seem to come and go. May be...
Does anyone struggle with ADD as a symptom from lyme? I’ve seen my daughter improve in many ways with treatment. She still struggles though with waking up early and still needs an occasional nap. She...