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Posted 12/6/2016 9:08 PM (GMT -5)
Hi Everyone,

So our LLND Rx'd Artesunate for my son who is already taking Azithromycin and Beyond Balance Bab 2.

I'm pretty sure he has Bartonella, but we tried Rifampin and he had such bad panic attacks, we had to stop it.

He was supposed to start the Artesunate 100 mg once/day for one week, then one week off.

If well tolerated, then 200 mg/day week on, week off. Because my son seems to be especially sensitive, I started with 50 mg/day for two days, then tried 100 mg yesterday. He had bad stomach aches and headaches last night and today. (he sleeps at least 12 hours - well, he is in bed for 12 hours). Has anyone had any experience with Artesunate?

My son's main symptoms right now (they are always changing) are:

the new headaches and stomach aches as well.

fatigue
anxiety/ocd
brain fog
wakeful sleep/insomnia
new lung, chest pain when inhaling
new increased depression

In September he was able to go to the gym for light weight training and went to school a couple hours/week. then October had the panic attacks, no school, just struggling to keep it together and do some homework. As usual, I just tried to let him sleep and feed him well. November he was fatigued, and was bedridden for a week in the middle of the month. He was able to read, but says his brain fog may be a little worse.

Today was the first day in a month that he has gone to home schooling for a test. He is depressed and remains very fatigued. We were hoping he could go back to regular school in February but I don't know.

Maybe I am expecting too much. Maybe my son was sicker than I thought. Does he more sensitive to treatment than most? I guess he has only been in treatment for four full months.

I'm looking for advice or suggestions what to do. Does anybody think we should add something to our regime?

Feeling a little bit sad I guess.

Hope everyone else is doing well.
Posted 12/6/2016 9:18 PM (GMT -5)
It takes time and patience, around 3 months before you notice something. I've gone the all herbal route. In that anti-biotics don't always work for everyone, and some leading Dr.'s that treat lyme think hitting things up with herbs and supplements are necessary, I'd suggest talking to your LLND about adding herbs. From what I've read, if you separate it out, take the herbs at a different time than the anti-biotics you will be okay.

To target Bart I used houttuynia.

For sleep
wouldn't recommend this for your son - but it helps me - cannabis
liquid melatonin under the tongue and experiment with also adding any of the following:
tryptophan
valerian
benadryl

For fatigue
Rhodiola and Eleuthros - tincture form, I used Herb pharm.

For neuro stuff I've benefited from greater celandine, and also this great yogi tea called ginkgo clarity

For anxiety - I get a lot of good support from theanine - it is the calming stuff in tea, and breathing and mindfulness exercises.

Intuitively I want to say I really benefit from some of Zhang's products.

The allicin is great, and he has stuff for bart. The HHI and HHII capsule.
www.hepahealth.com/ctr/web/request.html?_url=L3dlYi9pbmRleC5qc3A%2FYWN0aW9uPXNob3dwcm9kdWN0cyZjYXRlZ29yeWlkPTUmZG9tYWlubmFtZT13d3cuaGVwYWhlYWx0aC5jb20mc2lkPTkzMTY1Mjk2

His book was a short and sweet and good read as well.

Also - they offer one free consult.

It is normal and natural to feel sad. This is a tough journey!
Posted 12/6/2016 9:20 PM (GMT -5)
Man, so sorry to hear your so is struggling. What about asking for a pediatric rifampin dose and azith?

Beyond balance bab2 is a babesia formula. Does that make him feel any different? My artemisia herxes were head and stomach.
Posted 12/6/2016 9:47 PM (GMT -5)
I believe Artesunate is the Pharma based form of Artemisinin.

I'm wondering if either Artemisia (whole herb) or Artemisinin (active constituent of Artemisia) might be worth a try if he can't handle the Artesunate?

Might be worth discussing it with his LLMD.

He could start very low dose and work up.
With Artemisinin, you would do several 'rounds' of it..I did 4 days on with 11 days off,
Posted 12/6/2016 9:48 PM (GMT -5)
thanks multi and tickcheckguy :)

Multi, thanks for all the herbal ideas. I have quite a few on my shelf, but then I stop them when things get overwhelming or when we are starting something new. It's good when other people look at your situation with fresh eyes and make suggestions.

I do have Buhner's book, it is really great.

I think I am feeling a little overwhelmed, if I was to order herbs, which ones would you suggest? Japanese knotweed, uncaria rhyncophylla? I ordered some from a local TCM but they are concentrated dried, and I decided that I should try Woodland's instead, because I know that they are proven effective. I was stupid to impulse buy :(

The LLND said to not to continue with the Bab 2 when it runs out because he has been on it since August and is now trying Artesunate.

Tick, my son has headaches and stomach aches too with the Artesunate, do you think it is herx or side effect?

regarding the rifampin, I tried him on 150 mg/ day - 1/4 dose. Maybe we can try it again later or houttunyia

Much appreciated :)
Posted 12/6/2016 9:49 PM (GMT -5)
How low of a dose did he start with the Rifampin?

I opened the 300 mg caps and took approx 150 mg to start.
Posted 12/6/2016 9:51 PM (GMT -5)
Thanks Girlie ;)

How did you feel on the Artemesin?

we are at day 4 of 7 on/7 off. So maybe just keep trying it at half dose?

Did you think the Artemesin helped you? Do you remember what symptoms it helped you with?

Hope you are having a good day
Posted 12/6/2016 9:57 PM (GMT -5)
Girlie,

I started him on 150 mg /day of the rifampin. He was ok for 5 days, then had a horrible panic attack that lasted three days. After five days I restarted the rifampin at 150 mg and four hours later had another bedridden panic attack that lasted two days.

I believe he def has to revisit the rifampin or try houttunyia.

Oh, I forgot - another reason we are trying the Artesunate is because he has very very inflated IgE, supposed to be under 300 and his is >6000!! This is can be parasites, allegies (he had skin testing already) or myeloma.
Posted 12/6/2016 9:57 PM (GMT -5)
I herxed the most on the first round, even though I hadn't reached full dose by the fourth and last day of the round.
I woke up in the middle of the night shivering and crying - an emotional herx.

Subsequent rounds I herxed less.

My night and day sweats have improved - not sure if it's from the Art hitting Babs because in between the rounds of Art, I took Rifampin with either biaxin or Mino. I have read that sweats can also be Bartonella.

I'm still looking at the Mepron on my kitchen counter...haven't gotten intimate with it yet.
Posted 12/6/2016 10:02 PM (GMT -5)

Lymiemomster said...
Thanks Girlie ;)

How did you feel on the Artemesin?

we are at day 4 of 7 on/7 off. So maybe just keep trying it at half dose?

Did you think the Artemesin helped you? Do you remember what symptoms it helped you with?

Hope you are having a good day

Yes, I would see if you can keep it going for the rest of this round. After the 7 off, start the next round at the 50mg if I were you

Then maybe he can go to 100 mg on the third round...or if he's tolerating the 50 mg well on the second round, maybe part way through..he can do 100mg, knowing he will have 7 days off to recover.
Posted 12/6/2016 10:07 PM (GMT -5)
Aw Girlie,

thanks for your advice.

Haha, the Mepron, just waiting there for you :)

Soo many meds, so little time.

I will try to get him to carry on with the Artesunate and dose like you suggested. Why is he soo sensitive? Are these meds working at such small doses?

Thanks a bunch
Posted 12/6/2016 10:19 PM (GMT -5)
I think they might be working some at lower amount, and even if it just holds it at bay...it is allowing him to get up to the full dose.

The other option is doing 100 mg daily, but having him do only a couple days instead of 7 -and then after the 7 days off, doing 100mg, and increasing the days on to four days....then seven off...etc....each time increasing his number of days on (but taking the full 100mg)
Posted 12/6/2016 10:25 PM (GMT -5)
Good idea :)

How many rounds do you think you did?
Posted 12/6/2016 10:31 PM (GMT -5)
I did maybe 8 rounds...or 9 ....I would have to check my notes.

Mine was Artemisinin though...

I've just ordered some more Art and am going to do another round.
Posted 12/6/2016 11:15 PM (GMT -5)
How much of the Babs 2 is he taking? Maybe he needs a little more?

I was doing 2 droppers full of MC-BB2 3 times a day. But I probably weigh more than your son.
Posted 12/7/2016 8:49 AM (GMT -5)
Lymiemomster,

So sorry. It sounds like he is herxing to me. My son is similar right now - bad headaches, stomach aches, sadness, etc... he is home today and school is probably going to have him stay home. We hear today what modified plan they will propose.

He is also very sensitive with high EBC, and high food allergy numbers. Maybe because your son's numbers are elevated it's taking longer. Good for you for mixing herbs and abx. I am not ready to do that for my son yet.

How long has he been treating in total?

How do you know which BB Babs/Bart to order? I ordered 1 on both but then read that one is for Babesia microti and the Babs 2 is for ducani (something like that). Curious how people know.

I'm sorry you are going through all of this - I know how hard it is as a parent. Another thought for your son - I was told that pulsing is not a good idea right now - that it gives the bacteria time to reproduce. Again, not sure how accurate. Sorry about his panic attacks. The neuro stuff breaks my heart.

Hugs to yo.
Posted 12/7/2016 12:28 PM (GMT -5)
Lymiemomster - Has your LLND discussed what else he may be prescribing for Babs? Does he feel the Artensuate plus the Beyond Balance products will be all that is needed?
Posted 12/7/2016 2:53 PM (GMT -5)
So sorry to hear he isn't doing well. I know you gotten a lot of good advice here already so I'll just give you some words of encouragement - hang in there!

The first winter of treatment was the worst for DS. I think the first 6 months it was 1 step forward and 2 back but summer came and all that sunshine made a world of difference. While he is sick again and still in treatment this fall/winter, it is so much better overall. In fact his breathing (that chest pain you mention/strain in breathing is much better 1 year in - almost overnight one day he noticed he was using the inhaler less and breathing easier. We can see the progress and hopefully you will see it in him soon.

Last winter it seemed no matter how much detoxing he did, DS was just sick. His LLNP did cut back on his abx and added more supplements when I finally called and that helped some but honestly, time was what really led to improvement while plodding along with the treatment and missing a lot of school.

I hope that you and Huddie and all others with kids in early stages of treatment will see some progress by this summer.
Posted 12/7/2016 4:12 PM (GMT -5)
Hi PeteZa, his Llnd is actually phasing out the bab bab 2 for now and going for the artesunate for a while. My son was up to two full droppers/day and had been taking since beg August.

Thanks Girlie, I think llnd is just doing the artesunate and Zithro for now. I don't know if cdn llnd's can prescribe some of their other bab meds. I looked at their website and they have a lot of meds they can't rx. Artesunate was developed by Dr Zhang I think (Dr. Schaller article). I guess we have to give it a good try.

Dear Huddie, thanks so much for your kind words. It is really heartbreaking and my heart goes out to you trying to be caregiver when you are sick too :( about the beyond Balance, the llnd recommended bab 2 -I wonder if he liked the combination of herbs?

Cats claw, mother wort, burdock, stevia, barberry, Damianiana, wild yam, blessed thistle, plantain

Thanks Vancnyc, I really needed to hear that. I am starting to second guess everything. I guess "when you're going through hell, keep going" lol. Winston Churchill? And it is really great to hear your son is doing well. Really wonderful.

It's 1:00 here and he is still in bed with a pounding headache. He is supposed to have a test today. Maybe a hug and a bowl of soup (and alka seltzer gold) would be better.

Thanks everyone
Posted 12/7/2016 5:27 PM (GMT -5)
Lymiemomster - Dr. C never mentioned to me that he can't prescribe anti-malarials...but my new LLND did tell me that she couldn't prescribe them as a ND.

I couldn't find anything on the website saying anything about it.
Do you remember which section it's in? I'd like to see the list.

Hope your son feels better soon...(I bet a hug from his mom would help immensely)


Hang in there momster.
Posted 12/7/2016 11:32 PM (GMT -5)
Hi Girlie,

I can't seem to copy the link, but on the CNpbc.bc.ca website, under the category "for the public", there is a heading "prescriptive authority", click on the "scope of practice". On pg 15 it states they can not Rx atovaquone. This is another name for the U.S. drug mepron. Mepron mixed with proguanil is the drug Malarone. I guess this is why we can't get bab drugs. But artesunate and cryptolepsis are herbals suggested by Dr. Marty Ross. Why is everything so hard?
Posted 12/8/2016 12:42 AM (GMT -5)

Lymiemomster said...
Hi Girlie,

I can't seem to copy the link, but on the CNpbc.bc.ca website, under the category "for the public", there is a heading "prescriptive authority", click on the "scope of practice". On pg 15 it states they can not Rx atovaquone. This is another name for the U.S. drug mepron. Mepron mixed with proguanil is the drug Malarone. I guess this is why we can't get bab drugs. But artesunate and cryptolepsis are herbals suggested by Dr. Marty Ross. Why is everything so hard?

Thanks Lymiemomster - So did Dr.C. discuss if he usually has success with the herbals...or what patients do if they need pharma for Babs?
He and I never discussed, because it seems like he doesn't think I have Babesia.
My new LLND did tell me she couldn't prescribe Mepron...so I assumed that all ND's couldnt, but I wasn't sure.

She sometimes sends patients to Seattle for one appt with LLMD MR....or she asks the patients GP to prescribe it. I don't have a positive Babs test, so I doubt if my GP would.
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