JuliaFaith

My son was having similar issues. His doctor suggested that we put a drop of hydrogen peroxide in each ear after a bath. This really helps. I know because I do it too.
 
We have also had really good success with "Manuka Honey". I know it sounds funny but it works in the ears, nose, and throat. We make a 4 oz. jar of distilled water and add about a tsp. of the honey for ears and nose. I also add 1/2 tsp. to cooled tea (don't want to fry all that good stuff in it) during colds and coughs. Have a note to buy 35+ next time. There are different numbers on the jars. Our 8.75 oz. jar was about $35 but is lasting a long time and we use it frequently. It seems like the www.goodhealthguy.com is where I first learned about it.

When I was looking for info on kavinase, I could only find good reviews (which all sounded like infomercials). I wanted the good and the bad. Kavinase has two ingredients as far as I can tell - Taurine and phenibut. So I looked up phenibut, dosing, side effects - and that's when I found forums of people using it for sleep problems and many seemed to have issues with it losing its effectiveness, so they'd increase dose and then realize they had horrible withdrawal when they tried to taper down. Now, they were using doses in the 4mg range and kavinase is only 1mg per capsule of some "proprietary" blend of taurine+phenibut, and you're only supposed to take 1-2 capsules. But....I also assume 2mg for a child might be just as potent as 4mg for an adult. Some forum users compared it to benzos and other addictive drugs. It just set off warning lights for me - not something I wanted to pursue.

I first used ozonated olive oil topically for scraps, bruises, rashes, eczema, mouth sores, etc. which was extremely helpful.
 
Then I had a sinus infection that was ongoing for over a year and antibiotics were not helping. It took two ozone injections to clear things up. Worked phenomenally but it also turns out many sinus issues are truly yeast/fungus and maybe why antibiotics didn't help me. After such great results, checking with our LLMD, I decided to look into ozone further and found an NP in Northern CA that does all different kinds of ozone treatments. Initially, he had me breath ozone that was bubbled through olive oil. I have since added ear and rectal insufflation treatments. I do ozone once a week followed by hd IV C a couple days later... my fatigue just melted away in July and has not returned. I am fairly close to symptomless now. It turns out the ozone will help eliminate metals as well which was an issue for me. I could just smell the metals dumping after each treatment.
 
So, right now I am in the process of re-checking heavy metals, viruses, mycoplasma, thyroid and hormones. Inflammation markers are normal and so is my Nagalase. If every thing looks good I will stop the last antibiotic I am on in the next couple of month. I should have most of my results soon. Truly the turning point in my recovery. We are having similar success with my son who had a chronic cough off and on for years... some would call it a TIC but it rapidly went away when ozone was introduced. Perhaps the ozone was getting to areas the antibiotics couldn't reach or the cough was from yeast who knows but it is gone.
 
I highly recommend ozone with an "experienced practitioner". You can herx intensely if you over oxidize the blood cells...... so, slow and steady wins the race. You really need to build up on the type of treatments and dosage. I know they use ozone for joint issues often referred to as 'Limb Bagging' but never discussed that particular therapy with our NP. There are other more intense ozone therapies but I have had such great success with insufflation there is no need to move beyond what I am currently doing. Hydrogen Peroxide is a similar process. Here is good link that explains the oxidation process.
 
http://educate-yourself.org/cancer/benefitsofhydrogenperozide17jul03.shtml

Organic flour should not have glyphosphate sprayed on it. Conventional grains and legumes are sprayed during drying. Wheat flour was changed in the 80's when the grain was bred to be a shorter heartier stalk. The by product is a grain with a substantial increase in gluten proteins. This may explain why people can eat pasta in Europe but have health issues here in the US.

My DS showed no allergies to corn. His allergies during his last flare were at life threatening levels and we had no idea! We eliminated everything on the list and had a slight improvement. I noticed he craved corn so I wondered if there was a "morphine like" effect from the immune response. We eliminated all corn except organic and we pop corn the old fashion way. His allergy numbers fell dramatically in 6 weeks and we are near normal levels! A Canadian study found the pesticide in BT corn is found in 93% of placentas from pregnant woman. Mexico announced last month that they are stopping the growing of all GM corn effective immediately. This corn is over 85% of US crops and is found in most "Gluten Free" products and soda.
 
http://articles.mercola.com/sites/articles/archive/2013/04/30/monsanto-gmo-corn.aspx
 
Analysis Identifies Shocking Problems with Monsanto’s Genetically Engineered Corn

Thanks JuliaFaith and SFMom for keeping us up to date with the alternative therapies.

For those of you interested in the gcmaf, here is a copy of the letter I sent to www.gcmaf.eu for an update on my son's treatment. It is a requirement for treatment which adds to their studies. It is my belief that the healing will continue even when we are done with the treatment as it is supposed to last your lifetime [not sure if that is true for all diagnosis]:

My son (15 yrs.) started on gcmaf over 6 months ago now. He had already been through 3 years of treatment prior to starting gcmaf and is still taking some supplements (detox, fish oil, thyroid meds, desmopressin, recently minocycine as well).

My first goal for trying gcmaf was to reduce high viral numbers (that had not gone down over 3 yrs. of prescriptions/supplements/homeopathic tinctures). Valcyte was the last prescription tried in which he had 6 weeks of 'feeling better' for the first time in 3 years and then went back to 'before' baseline (flu-like sypmtoms). This was two summers ago.

My second goal for gcmaf was to train his immune system to work better (i.e., PANS). He has been treated for several things which indicate that his immune system was not working well. He felt ill just being around others that were ill.

His nagalese was 1.3 at the beginning of gcmaf treatment-it is now .87. He will be finishing his second vial and then stopping in a few months. He has been on .05 mL 2xweek for the entire treatment.

His CD57 was 48 at the beginning of gcmaf-it is now 70. Took 3 yrs. with treatment for it to go from 24-48 before gcmaf.

His viral numbers have been mixed. EBV and HHV-6 have been the two that have been testing HIGH for 3 years. His last blood work showed the following:

EBV 4.0---Past: 3.6; 3.0 so not very impressed with this yet.

HHV-6 2.89--Past: 4.34; 3.64 so this has shown improvement.

Lymphs 45--Past: only one was below this at 41.1 (over a year ago), but the rest have all been 46-55. Not sure if this is significant but will take it.

Not seeing much with the immune system yet. He is in the middle of a cough which has always triggered his PANS which it has this time as well (per ART muscle testing and some symptoms).

Before this cough, he has felt better lately, than in the last three years (except for end of Valcyte two summers ago for 6 weeks). It has lasted over 3 months now. For the first time since my son got sick and never got better, he is referring to 'when he was sick' in the past tense, starting to exercise, and play soccer again.

We are hoping for continued healing.

Dairy will compound ear infections because it creates mucous not to mention highly inflammatory.

Thanks Rowing Mom. The recording of the interview was free for today. Thanks for the link on the paper. I need to absorb all this important info.
 
They also talk about the pathways disruption with Dopamine and issues with a buildup of ammonia and formaldehyde in the body not to mention all the disruption in the gut creating issues of encephalitis.
 
I knew GMO's are bad but the info points to me a major piece of the puzzle. Glyphosphates began in the late 70's and with the addition of Round Up ready crops in late 90's Autism and Neuro issues have soared. I find it interesting that Swedo started her research on PANDAS in 1998!
 
The FDA approved a 30 fold increase in human exposure to Glyphosphate last March to combat resistant weeds. Go Organic!

I have helped my children with ear infections by using Thieves essential oil around the outside of their ears. Thieves is made by Young Living and can be ordered on line. It has the essential oils of cloves, cinnamon, lemon, eucalyptus and rosemary. These oils (especially the cloves) have strong antibacterial and anti viral properties. Will it cure the infection? It could. it has for us. We suffered greatly with ear infections.
 
If you get the oil, you should dilute it 1:1 in coconut or olive oil because its a "hot" oil. Then rub 3 to 5 drops around the outside of the ear. Make sure not to get any of it inside the ear canal.
 
Garlic oil drops can help with pain, if there is any.
 
Hope this helps.

You make some goods points Hopeny. It could be that a 'mold' component of neurotoxins was a big player in my son's PANS (in addition to vaccinations/genetics etc.). To me the lyme and coinfections are always there but the immune system has to be able to keep them deactivated, just like viruses, which is the difficult part. This is why our focus has been on supporting the immune system and now trying to train it to work well again.

** Is she gluten and dairy free 100% ?
Has she tried this?
Personally, I recently went 'Paleo' diet for my gut issues (no grains, no dairy, no legumes) it's meat, veggies, fruit, nuts (except peanuts)
And I cannot believe how much better I feel, my mood has been lifted,
sleeping better, and hungry (eating.) I was 100% gluten free, but it wasn't enough- I found myself just eating gluten free bread products,
and not getting enough fat in my diet. I added teaspoons of coconut oil in my hot drinks too.
With a history of eating disorders for your daughter, tho, not sure how food changes go over.

I agree with Rowing Mom. Our children had multiple chronic infections and viruses. IVIG helped our older son but six months post his last treatment I could tell it would not provide complete resolution of symptoms that we were hoping for him. He was starting to regress with blood in his stool and why we needed to look beyond just strep as the culprit.
 
We are in our 4th year of treatment (last IVIG treatment was January 2010) and older DS's only remaining symptom is regular headaches and think that has to do with heavy metal chelation. We have found IV nutrients to be as helpful as IVIG and is a lot less expensive. He now gets hd Vitamin C weekly (strong anti-oxidant) and will provide other nutrients via IV. This particular child does have immune deficiencies of both his IgGs and IgAs. We will continue to treat him until heavy metals are resolved and nagalase normalizes. If your child is deficient in amino acids they will have difficulty making IgGs and why these particular immune deficiencies can occur and why we choose to boost him with vitamins/minerals over IVIG. Additionally, it is 'believed' if the Nagalase is elevated the immune system will have a difficult time rectifying itself. Treating his elevated Nagalase with GcMAF is under consideration also over IVIG. However, I have learned never to take any form of treatment off the table and will reconsider IVIG if we can not sustain recovery as hoped.

Hi,
 
Just wanted to update you all.
 
Just spoke with our LLMD and he agrees that without symptoms (or minimal symptoms) we should not rock the boat, and continue on our current treatment without adding abx.
 
He is giving us some anti-microbials like grapefruit seed extract and a few other things until our next appt at which point he will re-evaluate. We may run some more tests through Igenex.
 
Thank you all again for your thoughts - I appreciate each and every one of you. I can't even begin to express my gratitude as to what a support you all and this forum have been to me!

Sorry, Ophelia. On top of all the other medical stuff you're going through that is exhausting, having such worrisome thoughts all day must also be quite an exhausting strain.
 
My DS has suffered from obsessive thoughts from time to time and, honestly, these thoughts become more intrusive and more of an issue when he's not compelled to use his mind for other, more constructive purposes. As I recall, you are suffering from chronic fatigue and house- and/or bed-ridden much of the time, so that probably creates quite a "playground" for your OCD mind to go to town on!
 
Obsessive thinking has been one of the hardest manifestations of OCD we've had to face with our DS as so many exposure exercises (ERP) fail to root it out successfully. What does finally seem to break the chain . . . the hold that these thoughts can have over him . . . is to dedicate his mind to other constructive endeavors. Even if you're physically not up to much, have you tried crosswords, Words with Friends, Sudoku, word hunts, reading, etc., even if only for brief periods?
 
I also wonder if, given your "ability" to fixate on certain thoughts and worries, if maybe you couldn't channel that talent for "good" and take up meditation? Or even some sort of visualization exercises and affirmations to help you improve your feelings of self-worth, mental and emotional control, etc. I might suggest some books and/or workbook series by authors such as Shakti Gawain or Sonia Choquette. Each of these "spiritual" authors focus on providing you with tools to enhance your inherent skills of intuition, mindfulness, focus, etc., and the workbooks I've used from time to time include brief "thinking" exercises that put your brain to good uses, visualizing strengths, opportunities, etc.
 
Hang in there. I'm sorry everything is such a struggle right now, but it can and will get better. You're not giving up, and that alone is commendable. You just need some more support and an ability to see a light at the end of the tunnel.

Ditto. I wouldn't treat either. Homeopathics never helped us much but they seem to be just the right thing for your DS. I'd leave things as is.

If a person is not symptomatic I don't think an llmd would recommend treatment. There are plenty of people walking around with Lyme, unknowingly, who's immune systems are handling it.

Hello--At last visit to Doctor, she said that ds was showing a little bit of Babesia/mico (with muscle testing) and put son on 100 Mg Minocycline 2xday plus a homepathic abx called Cryptolepis (10 drops/day).
 
Now 3 weeks later he picked up a cough and when I heard it getting stronger, I switched to 500 mg mino 2xday and e-mailed doctor. Coughs used to be the started of a PANS episode but not sure if that is still true but with what doc. said 3 weeks ago figured mico. could be part of it so started stronger treatment.
 
Funny thing is, the doctor (who I now see) also said 'my Babesia' was showing up a little even though I was symptom free. She put me on a homeopathic abx called C.S.A. Formula. She directed me to slowly increase. When I first started it gave me the worst headache so I backed off on dosage which got rid of headache. Still do not have any symptoms but will probably be taking this for a while. Was surprised at how strong a homepathic med could be! She said since I was reacting then my body needed it.
 
My son did not seem to react to his homepathic abx.
 
Now we are both on 'maintenance levels' of our homepathic abx. No increasing for now.
 
So maybe all you need now are the supplements and maybe try a homepathic abx.? Something slow so you do not rock the boat? See what your doctor thinks.

Inexpensive anti-parasite:
 
Boil a few cups water, after done boiling add handful of chopped cilantro and let seep about 10 min. After it has cooled down, add a spoonful of organic miso. Quite tasty. Drink daily per Dr. K.

I forgot to mention..... When we treated DD aggressively for yeast with nystatin she broke out with Ringworm and a fungal rash. She also had a black tongue at one time indicating fungus as well.
 
I think your DD good response to anti-yeast protocol could indicate yeast or fungus.

I was also thinking her lack of treatment response could be mold related.
 
Here is a link for mold testing.
 
http://www.survivingmold.com/diagnosis/lab-tests
 
The other thing to think about is testing is her Nagalase level. "Nagalase is an enzyme that prevents Vitamin D receptors (VDR) from being activated on the surface of the macrophage. As a result, macrophages are not "activated" and our immune systems are not able to properly respond to invaders". We see one Dr. who believes elevated Nagalase needs to be addressed prior IVIG or the immune system will never be able to rectify itself. It is common for Lyme suffers to have elevated Nagalase.
 
http://www.betterhealthguy.com/gcmaf?highlight=WyJnY21hZiJd

DS was diagnosed with Pandas in March 2011. Had IVIG after having initial symptoms which began in Dec 2010. After IVIG flares were slowing down. It took time - about a year - for DS to catch up on social behaviors and learning. At age 11 today he is 95% better. He is on Azithromycin every day (3 ml) and has had very few flares. DS still has minor OCD issues but it is manageable. DS will say "mom you know I have to do this twice, or I have to make it equal. ". So we smile at one another because it's still a part of him that he and I both recognize is part of the after effects of his Pandas.
 
He is finally back to being a normal child and I so proud of all his accomplishments.
 
Parents, it does get better it just comes in small steps!

for those interested in naturopathic medicine. . . this past week was naturopathic health week according to a Senate Resolution
http://aanp.membershipsoftware.org/files/Naturopathic%20Medicine%20Week%20-%20S_%20Res_%20221(2).pdf
 
a Resolution doesn't really do anything but proclaim that this is something people are interested in and the Senate is aware that it is of interest/concern to citizens -- but it is a showing that the naturopathic movement is growing.
there is some good language in the resolution about chronic conditions/cost etc
 
it is a positive step in movement towards insurance coverage for alternative methods -- still a long way off, but a step nonetheless.

I was going to write what Mama2Alex wrote. When my DS had been doing lyme treatment for 8 months, he was better than where he started but no where as well as other kids who'd started around the time we did. Something was holding him back. He tested positive for KPU (aka pyrroluria) and three days after we started treating, my DH looked at me and said "what you'd do to our kid?!" (in a good way). It took 5 months to get up to the dose of Core that he needed (you need to go slow, as you will see herxing as the immune system grows stronger). But from then on, he was better able to fight the lyme and we saw more sustainable progress. He then got stuck again at 90% and Yasko/methylation/23andMe got us to 100%.
 
If your DD is stuck, there's a reason. Perhaps stronger/different abx or perhaps other things in addition to the lyme need to be addressed. But hang in there. You'll find it!

Mama2 - when you list folic acid, what do you mean? regular folic acid? folinic acid? methylfolate? Why were you supplementing a megadose 3x.week and also folate plus folinic acid pus some in his multi? My DD takes 67mcg of methylfolate every other day. If she took this much, even of methylfolate form, she'd be evil and a complete blubbering, angry mess. So the first thing that jumps out is you may be using the wrong form and you are probably using way too much.
 
I don't think you're giving enough B12 - it should be every day and with his VDR Taq ++ and MAO+ and COMT+/-, it should probably be hydroxyB12, not methylB12
 
For your DS, I'm not sure the coenzymate B is the right blend. My son and I use this and like it a lot. But neither of us has MTHFR issues. My DD who does have MTHFR +/- wouldn't do well on this because it contains regular folate, which she can't process well.
 
You list CBS +/+, so he should not be taking NAC or ALA. NAC makes my DD a flippin mess and it screwed up my liver enzymes and made me depressed (she and I are both CBS+/-). She takes CoQ10 as a separate supplement (be aware the CoQ10 comes in 2 forms. The better absorbed form is pricer).
 
For CBS, it doesn't look like you're giving enough molybdenum. The CBS people in my family take 75-100 mcg/day.
 
I can't comment on the TMG - have no experience with it.
 
So I think it would be good to give his body a rest for a few more days, then slowly re-start with one supplement at a time. You know I'm an art major and not a doctor. But if you want to discuss offline, PM me.