boysrlove24

Hi! What a great brother you are for reaching out to help your sibling. Mold is DEFINITELY a trigger and there are many who have improved after getting out of mold (first and foremost) and then detoxing the mold from the body. There is a urine test that can help to determine if your brother has mold toxicity. It's from Real Time Labs and measures the mold toxins that he excretes in a urine sample. The important thing though is to "stir up" the toxins in the body before taking the test. To do this my son's doctor had him take liposomal glutathione (1 tsp. oral glutathione) everyday for one week and then the day he's going to take the test have him sit in a hot tub or sauna for 10 or 15 minutes and wait for 30 minutes then collect the urine. My son took this test and it was extremely helpful. The only problem is that it is a very expensive test - $699. There is a great book on mold toxicity that you can check out - it's written by Dr. Neil Nathan and the title is: Mold & Mycotoxins: Current Evaluation and Treatment 2016. I hope you can help get him out of the moldy environment because until he is out of the mold he won't get better. He also needs to have a nasal swab to check for a marcons infection, but again if marcons is treated it will come back if he remains in the moldy environment. Hope this helps. Good luck and prayers for you and your brother.

Have you looked into Amy Smith in the Bay Area? She's very good.

Hi!! I just PM'd you... :-)

Hi - I am going to PM you...

My son has been on doxy and minocycline separately (same abx family) for months. My son has Lyme and Babesia and our #1 issue is tics. We seem to cycle for months from bad to worse with his tics with the bad being the best we've been able to get. However, recently we've stumbled on a couple things that have shed some light and are giving some hope: 1) Diflucan for yeast -- we have hit the yeast hard recently and stopped antibiotics for about a month after an allergic reaction and we have not noticed an increase in tics 2) stopped probiotics and supplements - seems like giving him a little break in the madness ( at one point 30 pills a day of abx, probiotics, herbs and supps) has helped 3) determined he has an MRSA infection in his nose - started a nasal wash of gentamicinnand a chelating agent and saw quick improvements. 4) LLM has commented on Japanese Knotweed - I followed her advice and started it and my son loves it - he asks for it now and says it helps him. I really believe that doxy and mino are awesome Lyme meds but they cause lots of gut issues and yeast. Treating yeast helped us a lot...so that may be a good place for you to go next. But check out the nasal area too and Japanese Knotweed is the real deal.

Hi! So good that you uncovered the mycoplasma and potentially Lyme. I believe you have an appt with Amy Smith next week correct? If so, that's exactly where you want to start and she will be very able to help you deal with mycoplasma (with the right antibiotics and/or combination of antibiotics) and she'll be able to look at your Lyme results to advise you further in that area. Amy recently moved offices - she was previously located in the same office as my son's LLMD but if she feels you need to see an LLMD she will advise you. For now, you should tackle that mycoplasma asap with antibiotics and then figure out how to go after Lyme if she indeed has it. Sounds like you've done a great job jumping on this early. Great job!!! Hope your daughter feels better soon.

We are in the midst of battling Lyme as well...it's dreadful. There are some serious lyme experts on this forum so hopefully they will chime in to help you more than I can... However, I can tell you that we had a similar experience with Flagyl - major herxing and my son's tic went bonkers. We had to stop. I've been advised by many on this and other forums that when tackling lyme go low and slow. Sounds like she is responding to the change in treatment but you may just need to go slower. I don't think I would add the third antibiotic until things settle down for her. You should also try a binder of some sort - our LLMD recommends Takasumi Supreme - its a really great charcoal and my son swears by it. He will not go to bed without it...the idea is that it soaks up some of the toxins being released by the antibiotics and herbs...you just need to make sure her bowels are moving regularly so that she can eliminate the toxins from her body. The epsom salt baths and other detox stuff you're doing will help this as well. One other consideration is to reassess which herbs you still need to do while on antibiotics. May not need all of those if they are fighting the same forms of lyme that the abx is fighting. Just a thought...

Hi! I just replied to your PM - and I recommended Amy among others. PM me back if you have any questions.

My son has Lyme (and Babesia) as well - sorry that your daughter is going through this, it's really horrible. When I read your post two things come to mind: 1) sounds like lots of steroids while treating lyme and 2) definitely sounds like candida. As far as #1 is concerned...I have been told that steroids are definitely helpful and sometimes absolutely necessary to get inflammation down. However, steroids do suppress the immune system so they are not the first line of defense for lyme. From what I understand many experience a major flare in lyme symptoms while on steroids because of the immune suppression which gives Lyme an opportunity to take over. In your post you said that the agitation and skin irritation came back with a vengeance following her last steroid burst. It may be that her Lyme was opportunistic and flared since it had the opportunity. Not to say that steroids should never be used I would just say it's a good thing to discuss with your LLMD... For #2 - the redness definitely makes me think candida. My son had that on his bottom at one point too. We were told to get an over the counter yeast infection cream and apply it a couple of times a day until the rash was gone. It did go away however, his tongue was whiter than normal so I had a stool test done by Genova Labs and it was very insightful. It showed high candida AND bacterial overgrowth in his stomach. We are treating that now and it is helpful. I recommend getting a stool test done right away to see if you can determine what is going on in her gut. Every time I do any research at all I keep landing on things that tell me that it all starts in the gut. So we have to be mindful of whats happening there and give as much support as possible. Hope that helps...I am no expert and after only 1 year and 2 months (and counting) of treating I'm still very new to the whole thing. There are many more qualified parents on this forum than me and hopefully they will chime in too!!

My son is on multiple abx in his battle against lyme - and we are constantly fighting yeast. We use several natural yeast fighters (Candicidal and Kolorex and we switch these out each week - Candicidal one week and Kolrex the next) he also take two Florastor capsules daily, multiple probiotics and garlic. I'm researching caprylic acid as well and may add that to the mix too. it's a beast that is hard to tame.

Hi!! You mentioned an herbal antibiotic...what is that? Just wanted to keep it noted in my files for 'some day' when we are out of the woods. :-) Thanks!

Here is what the website states... Dosing The dose of this medicine will be different for different patients. Follow your doctor's orders or the directions on the label. The following information includes only the average doses of this medicine. If your dose is different, do not change it unless your doctor tells you to do so. The amount of medicine that you take depends on the strength of the medicine. Also, the number of doses you take each day, the time allowed between doses, and the length of time you take the medicine depend on the medical problem for which you are using the medicine. For naproxen (e.g., Naprosyn®) tablet and oral suspension dosage forms: For rheumatoid arthritis, osteoarthritis, and ankylosing spondylitis: AdultsAt first, 250 milligrams (mg) (10 milliliters (mL)/2 teaspoonfuls), 375 mg (15 mL/3 teaspoonfuls), or 500 mg (20 mL/4 teaspoonfuls) two times a day, in the morning and evening. Your doctor may increase your dose, as needed, up to a total of 1500 mg per day. Children 2 years of age and olderDose is based on body weight and must be determined by your doctor. The dose is usually 5 milligrams (mg) per kilogram (kg) of body weight two times a day. Children younger than 2 years of ageUse and dose must be determined by your doctor. For bursitis, tendonitis, menstrual cramps, and other kinds of pain: Adults500 milligrams (mg) for the first dose, then 250 mg every 6 to 8 hours as needed. ChildrenUse and dose must be determined by your doctor. For acute gout: Adults750 milligrams (mg) for the first dose, then 250 mg every 8 hours until the attack is relieved. ChildrenUse and dose must be determined by your doctor. For naproxen controlled-release tablet (e.g., Naprelan®) dosage form: For rheumatoid arthritis, osteoarthritis, and ankylosing spondylitis: AdultsAt first, 750 milligrams (mg) (taken as one 750 mg or two 375 mg tablets) or 1000 mg (taken as two 500 mg tablets) once a day. Your doctor may adjust your dose as needed, up to a total of 1500 mg (taken as two 750 mg or three 500 mg tablets) per day. ChildrenUse and dose must be determined by your doctor. For bursitis, tendonitis, menstrual cramps, and other kinds of pain: AdultsAt first, 1000 milligrams (mg) (taken as two 500 mg tablets) once a day. Some patients may need 1500 mg (taken as two 750 mg or three 500 mg tablets) per day, for a limited period. However, the dose is usually not more than 1000 mg per day. ChildrenUse and dose must be determined by your doctor. For acute gout: Adults1000 to 1500 milligrams (mg) (taken as two to three 500 mg tablets) once a day for the first dose, then 1000 mg (taken as two 500 mg tablets) once a day until the attack is relieved. ChildrenUse and dose must be determined by your doctor. For naproxen delayed-release tablet (e.g., EC-Naprosyn®) dosage form: For rheumatoid arthritis, osteoarthritis, and ankylosing spondylitis: AdultsAt first, 375 or 500 milligrams (mg) two times a day, in the morning and evening. Your doctor may increase the dose, if necessary, up to a total of 1500 mg per day. ChildrenUse and dose must be determined by your doctor. For naproxen sodium (e.g., Anaprox®, Anaprox® DS) tablet dosage form: For rheumatoid arthritis, osteoarthritis, and ankylosing spondylitis: AdultsAt first, 275 or 550 milligrams (mg) two times a day, in the morning and evening. Your doctor may increase the dose, if necessary, up to a total of 1500 mg per day. ChildrenUse and dose must be determined by your doctor. For bursitis, tendonitis, menstrual cramps, and other kinds of pain: Adults550 milligrams (mg) for the first dose, then 550 mg every 12 hours or 275 mg every 6 to 8 hours as needed. Your doctor may increase the dose, if necessary, up to a total of 1375 mg per day. ChildrenUse and dose must be determined by your doctor. For acute gout: Adults825 milligrams (mg) for the first dose, then 275 mg every 8 hours until the attack is relieved. ChildrenUse and dose must be determined by your doctor. Missed Dose

My son was just prescribed low dose naltrexone (LDN), which we will start next week. Have you looked into that? Regarding Naproxen...I have heard that some do much better on naproxen than ibuprofen. 2 -3 times a day at full dose.

Hi vvny, I was researching LDN and was wondering how your kiddo is doing on it? I believe you were trying to address tics - did it help?

Very interesting and exciting! Did either of your daughters have tics with their Lyme symptoms?

Tj21, What treatment ended up working for your son? We've been treating Lyme since May and my son is getting only minor minor relief in his tics. How long did you treat PANS before your son's head jerks went away? Just looking for a success story as I feel hopeless sometimes that his tics will never go away.

Does anyone know what it means if absolute neutrophils are low on blood test? My son tested low this week so his doc wants to retest in a week to see if still low. If he's still low I'm told he will need to start a shark liver oil supplement - huh??? What is that? Anyone know if low absolute neutrophils is a big deal and/or what can be done to improve?

My son has babesia and our doc has him on Alinia and BAB-1 herbals. We started Alinia 4 weeks ago with a quarter pill and within the hour he started herxing. He was able to push through and after 2 weeks we added another 1/4 so he was on 1/2 tab. I think I pushed it too fast because I added another 1/4 yesterday and he's really struggling. His target dose is 1/2 pill twice a day so we're close but I don't anticipate bumping him up again to that last 1/4 pill for a couple of weeks - assuming he can push through this current herx - I may need to step him back to give him a break. Haven't even been able to consider adding the BAB-1 herbals yet until we can get thru Alinia. I guess my point is...It's a strong one - go slow!

Hi, did you receive a referral for a Southern California doc? I can PM you with some recommendations if not...

Be careful with docs prescribing clonidine for tics. Before we knew my son had PANS from Lyme a neurologist was trying to treat him for a tic disorder - she prescribed clonidine, which only made him worse -- so she kept bumping up the dosage. When we got past adult level dosage she then moved him to Risperdal and eventually added guanfacine. This went on for a period of about 3 months during which time my son spiraled so far down that I was very scared. We moved on to an integrative medicine doctor that removed all of the poison (her words) and began treating him for PANDAS and eventually tested him for Lyme. He is still battling lyme but at least looks and acts like himself again. Clonidine, Risperdal, Guanfacine...may be helpful for the right situation but they are not treatments for PANDAS/PANS and will only make your child worse. Try to find a good integrative medicine doctor or PANDAS specialist to get your daughter on the right track.

Which probiotics do you like that work against strep? That would be interesting to me to look into... Also, I've been told that there are antibiotic mouthwashes that could be made at a compounding pharmacy. I'm looking into that as well.

Hi everyone, My DS9 has had 5 strep infections on 6 months...all have been treated with abx and within a month or two back again. We have decided to move forward with T&A in two weeks. I mentioned this to his orthodontist and she said that we should remove his palate expander before his procedure. I inquired why and she said that the dental expanders carry a lot of bacteria that would not be good with a tonsillectomy. It got me thinking...my son has had 3 strep infections since getting the expander installed...I think the expander is carrying bacteria that is reinfecting him. I mentioned this on another forum and several families mentioned that their child has had similar problems...I'm so mad that this hadn't occurred to me until now. Just a warning...beware of palate expanders if you can!!!

I think I saw the article he wrote from a post you put up awhile back :-)