Son's LLMD visit and my follow-up. Opinions welcome!

You have had a hard time with herbs, so this is probably going to be easier. Too many of the powerful herbs did not work out for you.

Good luck and let us know how you do.

Detox and probiotics.

I also think it's sound like a good appointment. You got some more information and a plan.

Honestly, I was sort of wondering if I had Bart or not or just lingering Lyme. I didn't want to take more and more antibiotics if I didn't have to, but reading your posts questioning whether you had Bart and I feel like it just really mirrored a lot of my experience, I sort of felt like I do want my LLMD to give me at least one round of Bart antibiotics as well as doing the herbs. I can't really explain why, but it seemed clearer to me that you might have Bart and you should probably just treat it if you can.

Mepron is babesia treatment ..and may deplete folate ...if your insurance covers it ?..u may wanna test the hubby ...ny is endemic ..keep us posted

Yes huddie i got really sick on both herbs and antibiotics. Tje herbs are a little easier to hanfle but herx bad on both

Hi Huddie,
Sounds like a productive appointment. Many folks have used antibiotics to kick things off and then switch over to herbs to keep it going. There are so many options. You may find you tolerate abx okay. It seems like most all Lyme patients experience a lot of herxing when first treating whether with abx or herbs (for DS it was 6 months off and on) - seems you just have to push through it and take those breaks in herxing when they come. This can make school hard! However, this year we are seeing the payoff so it seems worth it for our DS at least.

I would also say just be careful to use herbs that are detoxing not bug killing while taking abx unless your LLMD recommends using certain ones together. Otherwise you are asking for 1 huge herx - I accidentally did this to DS the first month of treatment. I feel based on our experience and common sense, now that I think about it, that supportive detox is what helps when on abx especially at the beginning.

DS took malarone not mepron. Malarone is a pill form and thus can be much easier than the liquid but some drs may believe it is not as effective depending on the strain. If your DS has a lot of trouble drinking it maybe you can check back with the LLMD about switching to malarone. I believe with both it's a good idea to take with a lot of fat - like coconut or avocado to enhance absorbtion. DS also takes mino and is fine with it at long as he has breaks and pulses it.

Anyway those are my two cents. Now, on to treating and recovery for you both - you CAN do it! Keep the end goal in mind - you will get there!

Huddie - Azith is usually tolerated very well but can cause ear side effects. Don't want to end up with any tinnitus! Just a heads up.

Would you be able to buy a portable far infrared sauna or have him go somewhere? That may be an easy detox method that he would enjoy. He could read or something in there! Also, I'm not sure how active he is (or is able to be) but light exercise is great for detox too.

Hi Huddie,
I will give you my lowdown on detoxing. I do have to nag a lot and stand and watch him take them which gets very tiresome...lol. Your son is smart and I think you can get him on board. Taking the abx without doing the detox will just make the whole process take longer - not that it doesn't take an eternity in their young lives anyway, but they have to understand that it and probiotics are just as important if not more so than killing off the bugs with abx/herbs. Luckily he is pretty compliant unless it's something that he thinks doesn't work, like ASGold. But every once in a while I say let's just try and see if this time it does work. Once we find what feels good - foot baths, we go with it. He will also try and shower and finish off with a cold rinse once he's feeling a bit better and is less feverish. Tell your DS you are going to cycle through each possible detox to see what may work. Also, initially it may feel like nothing is helping. When the herx was too long I call the LLMD and they may adjust the meds so he can get over the herx and keep healing.

Here's what we do daily aside from any abx scheduled: am at breakfast (he takes all his abx/malarone with meals otherwise it's just too tough and it is still working. We do try to avoid dairy at those meals or keep it to a minimum - eg no glasses of milk, maybe just some cheese in the eggs etc)

AM: coQ10, l aceytl carnitine, gluthiaone, vit C, vit D, B12 (methyl) dandelion capsule, small glass of lemon water w/stevia powder, tinctures of burbur pinella, parsley and cilantro. Earlier we sometimes did collagen powder when his knee flared but he hated that the most.

PM: with abx, vit C/vit D at dinner

Bedtime: multivitamin, 1-2 different probiotics, small glass of kefir, milk thistle capsule, taurine, and magnesium every once in a while (can cause 2 day herx for him).

When chronically fatigued: add in foot baths, will try AKG (no effect), Benadryl (no effect), Activated Charcoal as mentioned can be GREAT (tricky timing with meds/meals though) 2 capsules, if it's going to work we see a turnaround in 3 hours.

Re: malarone - our dr suggested that over mepron not sure why but I'm guessing because he'd gag at the stuff. His appetite and taste was already so messed up.

Hope this helps some. There are hundreds of variations. The main point for your son to know is that if those toxins continue to build up he may slow his healing plus feel awful for longer. That was motivation enough for DS!

Girlie, I was trying to be positive for Huddie because she had such a hard time with so many of the herbs. I wanted to plant a positive vibe in her mind for taking those antibiotics, which we all know she dreads and does not want to take.

Just trying to encourage her.

Huddie, I think mother's have "mother's intuition" for a very good reason. No one loves that babe more than you and you will instinctively do what you think is best for him.

Not to say mother's don't make mistakes. My daughter had pink eye and the med we had to put in her eye was liquid neosporin. I found out the hard way that my poor lil punkin was allergic to neosporin. Who would have thought.

I felt bad, but hey, at least we found out.

I know you will make a good choice for him. Just remember that no matter what you choose, you can always change to something else.

Lyme has no perfect remedy and yet we have many choices to try, which is truly a blessing. Even lots of choices in detoxing.

Her eyes got worse.

Very hard on a Mom.

Huddie in 2001 with my first round of lyme, I took MEPRON and zithromax for several months and felt better than I had on any other combo. (I was incredibly sensitive to everything out there) I am not sure that my babesia totally got cleared or if I got it from another bite but the MEP Zith combo really well tolerated and welcome. I was able to be out in the world, plan my sister's wedding and participate. Something that I hadn't been able to do in the previous three years of treatment. I also took malarone for a while, but that did not seem to change things as well as the MEP&ZITH Other than wondering what it did to the internal flora.....It felt like it was good for me!
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Good luck to you and I know the heartache of having your kid be sick.
My son had a bite when he was a baby and was treated with ten days of a penicillin (what they were doing then) We though that he was fine... Had ear infections along the way which we treated with amoxicillin. When I got sick and diagnosed ten years later, he was tested again and pos for babesia and lyme. He was treated with a month of biaxin(?) but had no reaction so we thought clear.

It is 17 years later. He is 30 and has been suffering badly from anxiety and depression. HE was smart as a whip, retained everything but also had a touch of ADD. Tinnitus. I am just wondering if having tick borne illness has colored his whole life? I do not want to be that person that says that EVERYTHING IS LYME but I am just wondering. I talked to him about this and he says that he just doesn't want to go there right now. He has seen what I have gone through with treatment and treatment failure. He does not have insurance and just lost his job. My heart breaks if this is lyme rearing its head in just another sneaky life stealing way. I want to cry if I missed this one and if the microbes front and center.

This lyme thing is just criminal. I was in a line the other day at the store and 4 out of four people randomly standing there all had various stages of lyme. Come on CDC...... I do not want to belittle the horrors of Zika.....but lyme is EVERYWHERE . It is still lives of parents and kids and families and costing billions too....-

Post Edited (AK) : 11/3/2016 12:42:58 PM (GMT-6)

Huddie - talking about your son - being lonely tugs at my heart.

My son is an only child...and isn't close to his cousins.....he also had some trouble in school - he was bullied and I felt so sorry for him...it broke my heart. I worried about him so much. In his middle school years, he didn't have much of a social life. He would talk to me about it..and I would just keep telling him that the people who are mean to him are unhappy people....

In Grade 11, he found a group of friends...and he 'bloomed'....and never looked back. They were a group that didn't drink or do drugs...which was wonderful.
He is now doing great, has a good career at 23 years old, and is very happy.
We are still very close....and have a great relationship.

He didn't have the challenge of lyme disease, but he did have other undiagnosed health issues.

I just wanted to say that this is just a window of time...your son will get past this...and go on to lead a fulfilling life.
It seems like an eternity...but it won't be long and you will be looking at this time in the rear view mirror.