T_Anna

Thanks HopeNY. Dr. Cameron had time tomorrow so I think I'll go there first. Dr. Horowitz looks great, but I don't want to wait. I guess we'll see Dr. Cameron and see where that gets us. Someone also recommended a DR.Phillips in CT. I think I'll order the book. Thanks! T.Anna

Anyone have information on this doctor? Thanks in advance, T.Anna

Dedee what are you using(used) to treat Bartonella?

That is my understanding, but I'm sure there are others more well versed. For viruses, Reishe is supposed to be good.

What are you using to treat the Bartonella? The integrative doctor, wanted us to double the following (DS16 takes 1 of each/twice a day). Olive leaf extract Reservatrol Meriva Reishe Thisilyn I think he may be herx ing from the tincture of Sida Acuta+Hawthorne. Would increasing the above cause a herx? T.Anna

Update: Ds16 is holding his progress, but still not 100%. He is going outside. Went into the HS, after hours for his brothers game (hadn't been there since January 2013) and even ran into the principal and shook his hand saying he was looking forward to returning next year. He still goes to the bathroom once a day and cannot seem to go for less than 2 hours : ( We added the Sida Acuta and Hawthorne tincture because he has Bartonella (or Bartonella like Organism), but he is now sleeping a ton. The tricky part with the CBD is that they need less after some time and we have hardly lowered it, so maybe we'll try that, because he is sleeping a ton the past few days (or it's the Sida Acuta +Hawthorne tincture/herx). Overall, things are looking good. We tried to lower Valtrex and that backfired so we went back up so we still need the other meds. T.anna

Is he taking any supplements? Like olive leaf extract? Curcumin?

Ok, he's sleeping a ton again and doesn't like the taste of the tincture. Any suggestions other than juice? Also, he is sleeping, A LOT, this may be how his body deals with die off/herx, how long do I let it go before I stop or just give once a day? We are doing 15 drops twice a day. Should I ask to add Doxcycline? Thanks as always, T.Anna

No, but did have a huge rebound when we lowered. Right now viruses are a big issue so we will stick with the Valtrex. T.Anna

Phewy. I bought tinctures of both from woodland essence. I guess I'll test them in the capsule first. T.Anna

Can I put those in a capsule? Can I, should I, mix them together (the integrative neuro said to mix 1 to 1)....or try each separately? DS16 will take almost anything in a capsule, but is more resistant to other modes. Thanks in advance, T.Anna

We lowered DS16's Valtrex and he was a wreck, fatigued, etc. JUst upped it back and he is slowly coming back (but very noticeable in just 9 hours). He did not respond at all to l-lysine, but neither did I . We are also doing Reishe for the viruses. He also has low WBC that they think may be from the Bartonella (or BLO). Waiting on the Sidaacuta and Hawthorne. Anyone ever try giving these in capsules? T.Anna

Pandasphilly, I give one dose in the am (with all the other pills/supps) and one in the pm (around 10). We also put them in caps (30 drops in a 00 size, but they leak, so now I will try 2x 15 drops). Dedee, they have a new "CBD Complete" that may be better, they said they reformulated so that it is more agreeable to autistic children (cannot remember why). T.Anna

What great news!

Ophelia, you can contact the people at www.bluebird-botanicals. com They are extremely informative and may be able to help you.

So we tried Suprax to get a better handle on the remaining issues. DS16 did NOT do well, prob a herx/die off, but he wont do any detox stuff so it makes things complicated. We stopped Monday and today he said he's feeling a little better. The CBD capsule is the first one he takes, he calls it magic. We are doing 30 drops, twice a day. This bump in the road was hard on all of us and we will be pursuing a more integrative approach to deal with the Bartonella (BLO), such as adding Thisyln, Sidaacuta and Hawthorne to Japanese knotweed and Reishe. I have been giving it to DS13 as well and he no longer has any trouble going to sleep (used to be a huge issue). T.Anna

Anyone have any experience with treating this? DS16, is doing so much better and we are going to try to treat this and see if we can get back to 100%. Just wanted to know if anyone had any experience with this. T.Anna DS16 - doing amazing well after starting CBD Hemp Oil (www.bluebird-botanicals.com) We had tried, IVIGs, PEX, abx, synthroid, antivirals, supps, nothing gave us the results that this did.

Update. DS went out last Thursday. Walked to his friend's house and the mother vetoed the subway (ahh, the irony). So I drove them and they popped out of the car and walked around for a couple of hours. DS didn't want to leave. They came home, texted another friend and DH took them all to see Captain America. Yesterday he came next door to my neighbors house (she was having a party) and even reached out to an "ex" friend who basically ignored him the past two years. He hung out the whole afternoon and later helped us clean up our Passover and opened up about how traumtic the CBT therapist was and other details. He is still in the bathroom for 2.5+hours a day and showers are still 40+ minutes (i know, i know, he wasn't bathing at all, why am i complaining), but I think it shows that we still have a long way ahead of us. He did say he's excited to go to see Dr.T. Not sure I mentioned that he had a bartonella like rash recently. The integrative MD thinks it is due to DS's imuune system comping back and that we may want to try some skullcap?! Still a process, but happy about the changes. Found an old school psychologist who might be hlepful for DS to have an outsider to talk to. we'll see if he's ready to see him. Thanks as always, T.Anna DS16 tomorrow

A vapor pen is a way to inhale the oil, it's an electronic device similar to an electric cigarette. The information I read says that inhaling the vapor gives a different effect than ingesting. I will try on myself first since there is still a potential stigma that it's similar to smoking. It's all legal since you are using it with CBD oil that has no THC. T. Anna

He went out again today (just his 2nd time), to walk to a friend's house. It took him forever to get all his things together, but he walked out alone and we haven't heard from him yet. His plan is to take a subway into Manhattan with his friend.....I have been a nervous wreck since I woke up : / T.Anna

Interesting article about why CBD works: http://norml.org/library/item/introduction-to-the-endocannabinoid-system

May zoo. DS is 125lbs (hopefully more now, but we avoid scales since he had restrictive eating). I'm still giving it in capsules, but I ordered a vapor pen from bluebird-botanicals.com because I think it might be helpful that way (curious to try it myself). T.Anna

We are using CBD Hemp Oil from Bluebird-botanicals.com. A 1 oz bottle costs $79. I piggybacked on the research of others who said that this was the highest concentration in a legal product 20%. I started with 25 drops in a capsule based in that site's FAQ. I'm putting it in capsules so it needs more to get into the body. On FB there are many starting lower. The company has a great customer service and will help guide you on dosing. T.Anna

MissMom, the CBD oil is legal in all 50 states. There is less than 1% THC (so that it meets FDA regulations). Drug tests look for the THC (what makes you high from MJ) which does remain in the system for days. There should be NO "drug" issue at all. I only respond because it really seems to help MANY people with PANDAS and OCD and has almost non-existent side effects (as opposed to SSRIs, CellCept, Steroids, Valtrex, Anti fungals and antibiotics). So I would hate anyone to be scared off because they think they're child will be suspected of drug abuse. If random testing is an issue, then contact www.bluebird-botanicals.com and ask them directly. There is more information on drug testing here: http://norml.org/legal/drug-testing/item/the-abcs-of-marijuana-and-drug-testing T.Anna

He is continuing to push himself. Today he ordered underwear, pants, tshirts, socks and cargo shorts. He doesnt want to wear any of his old things and at almost 16 I doubt very much if anything he was wearing at 14 will still fit. He is sleeping in his room again too (on an air mattress, but it's a step). Just hoping it continues. T.Anna