susie

With my daughter, it took a while on the fluconazole before her hair began to fall out. Not only did it come out easily, but the hair itself (the new growth near the scalp) seemed very, very weak. Check out this reference talking about long term use of fluconazole and alopecia. http://www.ncbi.nlm.nih.gov/pubmed/7625624

Hi Anna, My daughter had significant hair loss from fluconazole. Not sure if your son is even on it, just wanted to mention it in case. I had a friend in high school who picked out all of her eyelashes. It seems like if he's pulling constantly, then that could be the cause (but I don't know anything about trich.)

My DD9 takes l-tryptophan at bedtime. It has been very helpful for her anxiety and worked well from day one.

Ok, thank you so much! Now I have a place to start.

We recently got Yasko results back for my daughter and she also has COMT +/+ mutations for both the v158m and h62h. She also is +/+ for MTHFR c677t and has VDR mutations as well. I have to admit that I have not implemented many new supplements based on these results because I'm completely overwhelmed by the whole thing. We've been doing biomed for 6 years and my daughter's list of supplements is a whole page long, so I'm no stranger to complicated protocols. How do you choose which from the list to use? There's no way we could ever afford the whole enchilada, much less have the time to swallow all of the stuff. How do you do it? I thought that we would be getting an individualized supplement list, but the suggested supplements for everyone is an entire page long, then there are the 4 pages that are based on the mutations. I know there are answers in those reports that will help us if I can only figure out what to do. My daughter's PANS symptoms are fairly mild now compared to a couple of years ago, but we just can't seem to get rid of the tics and anxiety.

Could I get those names also? I live in the Seattle area.

I wonder if it's a tic of sorts since it's not occuring at night. To me it seems possible that the urinary sphincter muscle could spasm/tic also.

We use Blt tincture. My daughter is 8 and gets 30 drops. I use an empty capsule (not sure of the size, but a larger one) and add fill it with the drops. You have to give it right away (within a minute or so) so the capsule doesn't dissolve.

If it's causing candida die-off, then the toxins could cause aggression. My daughter is on it for candida prevention. Have you tried binders (away from all meds), Like bentonite or charcoal?

I tried trazadone for sleep several years ago (I've tried many things too). I believe that it gave me disturbing vivid dreams and didn't work all that well. That was just me though, I've heard it works well for some.

My DD7 stopped rifampin about 2 months ago, not because we were sure that bart. was completely gone, but because she was losing huge amounts of hair and we thought that maybe the rifampin was the cause. She was in a pretty good place when we stopped. OCD and anxiety were much improved and a facial tic completely disappeared while on the rifampin. She took the rifampin (along with azithromycin and augmentin) for about 4 months. We were told to keep an eye out for increase in bart symptoms and that relapse is usually with a week. We did not think that we saw any increased symptoms in the first week, but now I'm wondering if symptoms are re-emerging. She is having increased anxiety and obsessing more and has gone through periods of asking a lot of questions about things that have her worried (like fires and things). She asked a bunch of questions about fires for a couple of nights in a row, but then stopped. I'm worried that if this is relapse, then the 4 months of treatment will have been for nothing. I have an RX for bactrim, but haven't started it. We could also resume the rifampin since the hair loss has mostly stopped (we never really figured out the cause). Has anyone seen bart. relapse take longer than a few days or a couple of weeks?

I love astaxanthin. I buy mine from Swanson. Mercola has a good article here: http://articles.mercola.com/sites/articles/archive/2011/07/12/astaxanthin-the-antiinflammatory-nutrient.aspx

I would like to hear your experiences with SSRI meds. in your kids. My daughter was initially thought to be PANDAS, but strep was never proven except in her gut. She had elevated CamK and anti dopamine 1 antibodies. She was later found to have lyme. She's been on antibiotics and is doing much, much better in terms of OCD and tics, but still has pretty significant anxiety issues. Our ped (PANDAS specialist) wants to start her on Lexapro. Dose is to be 2.5mg X 4 days, then 5mg X 1 week, then eventually up to 10mg as tolerated. My daughter is 7 and weighs 53#. I know I've heard about "activation" with SSRI's and I'm not really sure what that means. Increased symptoms? I'd love to hear if others have had success with SSRI's and at what dose. I wasn't expecting the dose for my daughter to be the full standard dose. Thanks in advance for any insight you can give.

I'm interested in what you're saying about MSH and OCD connection. But what I'm not getting is that 32 would be critical when 0-40 is the normal range. Is this supposed to be critically high or low? Thank you, Susie

Florastor is a type of yeast, so would be killed by the nystatin.

Naltrexone is not a narcotic, but an opiate receptor antagonist(blocker). It binds to opiate receptors in the body and blocks them. If someone takes a narcotic overdose, then the remedy is naltrexone (it displaces the narcotic from the receptor and binds to receptor). I honestly don't know how it works for hyperactivity, but it is supposed to have some immune modulating properties as well. Hope this helps.

Yes, I've heard this too. I'm not positive, but I think I remember that the famous pediatric LLMD, Dr. J has said this.

Our LLMD says that mycoplasma can also cause a low CD57. There may be other infections too.

Has anyone's child gotten chickenpox while lyme positive? I'm wondering if there's anything I can do to decrease the effect if she does get sick. Her symptoms are PANDAS-like: tics, OCD, anxiety, rage, etc. She's been doing very well for the past several months and I'm hoping to avoid a regression. She was exposed probably last week, so I think I'll know in the next 7 or so days if she's going to get it. In some ways I hope so since it is supposed to be easier the younger you are (she's 7), but I don't know how the Lyme will be affected.

I have this exact same thing and it's my worst symptom. If you can't sleep, then all of the other symptoms are amplified and your body can't fight the infections. I've tried Lunesta too and it knocks me out for about 4 hour, then I'm wide awake and still tired. Now I'm on mirtazapine plus a bunch of supplements and am doing better. Magnesium is critical for me.

Do you think the fevers were related to the lyme? My daughter used to get high fevers with no other symptoms that would last for days. One time she had a fever that would spike to 105 when the ibuprofen wore off and this went on for 10 days. She had no cough, sneeze, or any other symptoms except malaise from the fever. I've often wondered what that could have been. Doctors were clueless.

Last year my DD participated in a walk-a-thon which turned out to be a run-a-thon. She ran hard (for her) and symptoms did seem to ramp up for a couple of weeks afterward. The school is having their walk-a-thon again soon and I'm wondering if there's anything I can give her to help protect against a backslide. The other variable is that we just stopped Augmentin this past Saturday and I've been holding my breath and waiting for the fallout from that. She's still on Azithromycin and rifampin. Does anyone have any ideas for something I could do to protect her from the exercise? I've already begged her to just walk and not try to run, but she wants to do what the other kids are doing. Also, does anyone have experience with when I might expect symptoms to worsen after stopping Augmentin if they are going to? I think it only took a couple of days for OCD to re-emerge last time we tried to stop, so I'm hoping that since we're now 3 days out that maybe that's a good sign.

I know this is an old post, but Amy, do you remember how long it took for the backslide to begin after stopping the Augmentin for your daughter? Did you end up adding it back in? My daughter has been on both Azith and Augmentin and our LLMD has been wanting to stop the Augmentin for a long time. She's been doing very well on this combo. Her OCD is 95% better, anxiety is 80% better, some tics still hanging on though. I've resisted stopping Augmentin because all previous attempts to stop it did not go well. She began to backslide quickly (I can't remember what else she was on at the time though). Anyway, we decided to add Rifampin and stop the Augmentin. It's been 48 hours since her last dose and I'm waiting for all heck to break loose. Our doc seems to be nervous about having her on too much at once (I'm nervous too, but this is what's given her life back). She does have lyme and the doc thinks bartonella (based on symptoms). Does anyone have any wisdom to share? Thanks!

Did you ask your doctor? It seems that if you're going to be on antibiotics, then seeing what your gut flora looks like while you're on the antibiotics (and probiotics) makes the most sense. If you stop, then it's not a true picture of what things will be like in your gut while you're on therapy. My daughters last stool test (not Metametrix though) showed plenty of good flora even though she was on antibiotics (because we continued probiotics too). Also, she still had some bad stuff despite the antibiotics. Group B strep I think it was, which should have been taken care of by the zithromax. That was good information to know.

Good luck Micheal. I'll be praying for you.