rowingmom

Fever response, yay! A functioning immune system! We haven't seen fever in a long time. My two cents would be: if he has been doing well, wait and see if he makes it through the infection unscathed. If you see PANDAS ramping, then give the anti-inflammatories.

Thank you so much for posting. It must feel great to actually see the reasons for the different reactions in your children. The fact that you had already figured out their individual responses to different supplements is amazing. You are truely a wonderful researcher/mom. Hat's off to you!

We used biaxin/rifampin for lyme/bartonella and saw a good decrease in pain/ticcing symptoms to about 80% of what they had been. We are still after the last 20%.

Just a thought, as I know little about OCD; only that it seems to be associated with PANS the way ticcing is. I have seen some mention about using NAC (you said you may try that next) as well as l-carnitine, to help ticcing on the ACN Tourettes forum.

Our daughter's motor/vocal tics started at 7 years. During August of that year she had her MMR booster, TDap booster, got bitten by an insect and reacted with a large rash. Her physical lyme/bartonella symptoms started 4 months after she turned 10. Shortly after that I noticed the buds on her chest starting to enlarge.

Your daughter sounds very much like mine did before beginning treatment. DD11 was socially immature. She got along well with children at least 3 years younger. She could only understand more mature behaviour if she could read about it in a book (on how to handle anger, sadness etc). She did not seem to pick up social cues by watching others, or even by role playing with dolls/toys. Not that her eventual understanding made any difference to her reactions. She understood completely how to react to a situation, but could not respond correctly under stress. Her piano teacher had to give up lessons because she would hit herself and rage if she played notes incorrectly (practice was a disaster too, I sat beside her for every one to help her out - 3 years worth, there was so much crying). If she could memorize the finger movements on the keys, she was good, but with pieces longer than 2 pages this became too difficult. Executive function was non-existant and rages would occur with any unexpected transition or frustration. She needed prompting for everything. I had to either dress her, or stand in her room and say "put on your shirt, put on your pants" etc., or she would become distracted and head for a book. I had to brush her teeth because trying to brush while looking in the mirror was too confusing. She had a total lack of concentration. I had to sit with her every night with homework to redirect her attention. I had to teach her every new math concept at school because she couldn't pay attention long enough to learn it from the teacher. She was removed from class to write tests (with an EA to refocus her on the test if needed) because the other kids were so distracting. She was super sensitive to sound/movement. Usually she was happy to play in her own little world of dolls and books (she didn't really read them though, just skipped around and read bits here and there. Pictures were always good), and would do so for hours. She could become totally lost in TV or computer if I let her (but I didn't - 1 hr/day is it). If nothing was required of her, life was great. In fact, I may have left her to it, thinking she was just a quirky, immature child if she had not eventually developed pain/physical symptoms. After 1.5 years of lyme/bart/babesia treatment she really is a different child. She works calmly through frustration, she doesn't rage, she concentrates through all homework (even with noise or other distractions). She makes her bed, picks out clothes and gets dressed by herself. She keeps an eye on the clock in the morning, takes her supplements at the right time (and reminds me if I am running late with them), eats breakfast, and gets herself out the door for the school bus. Mornings used to be a horrible scramble of jamming her in clothes and screaming, but now it is a beautiful thing! She sits down and does her homework when she gets home. She sets the table without being asked, and volunteers to help in the kitchen. She is still has some motor/vocal ticcing that flares with protocol changes, but seems to accept it as a part of life. I often wonder what would have become of her if we had not sought treatment and had instead gone the ritalin route. Of course, we still have a ways to go, as she is still on multiple abx treatment, but I now know the sweet girl that was hidden behind all the confusion and pain. There have been two children in her classes thoughout the years that have been expelled for rages (requiring police assistance). Both had dx of tourettes with OCD. DD11 was always sad about these incidents, because she said, other than the raging, the children were nice. You have to wonder if it was really PANS...

Glad to hear of steady improvement! Keep it up!

Sorry - I seem to have lots of questions today. What is SBC? Who's OAT test did you run, and which specific test? Thanks so much.

Could this be a motor or vocal tic? Does he have any other OCD or ticcing symptoms? Have you asked him if he has any preminatory sensations preceeding the burp? Is it suggestible, meaning if you mention burping, does he then have to burp? Being on abx, you are supplementing with probiotics to help prevent overgrowth of problematic bacteria?

I see the original post was from one year ago. Are you still using Deseret and do you think it is helping? Has a change in protocol produced your herx? I have found a naturopath that carries this series, but prefers to use her own. In fact, after paying $300 for 2 biomeridian sessions and the only recommendation was to start slowly by replacing the homeopathic lymph drain our LLMD uses, with the one the naturopath manufactures and sells to her patients, I left, thinking it too much of a conflict of interest. I don't know if I can wrap my head around the whole idea of german biological/energy medicine.

If you take a look around the forum you will find that a lot of the children here are quite sensitive to psychiatric drugs, and that normal doses do tend to cause over-reaction. Welcome. There's so much to learn from the parents here. Also, I PM'ed you.

DD11 takes one Boluoke (lumbrokinase) and 2 InterFase (Klaire Labs) every morning. This was one of the first things our LLMD started her on when beginning treatment. I use serrapeptase and nattokinase for myself, they are a little cheaper. The LLMD says serrapeptase is used more if there is joint involvement, and that tends to be my problem - lower back, metatarsal bones in the feet. Stephen Buhner recommends nattokinase on his website if people are not getting the results they hope for with his herbal protocols.

I decided to use luteolin (Lutimax) only, as some children have issues quercetin. We dose once per day, and we also use curcumin. Here is an article on brain inflammation and the use of another supplement containing both luteolin and quercetin from a site with a lot of good information on brain inflammation. http://www.mastcellmaster.com/documents/brain-health/J-Clin-Psychopharm-2011-Brain-Inflammation.pdf Sorry to say, we have never had instant results with any anti-inflammatory, including advil.

Just a note - the correlation between D3 levels and MS prevalence does not prove causation. Low D3 levels are also common in lyme infection, perhaps being used by the body to fight infection. Lyme is a disease mostly found in temperate regions, it causes brain lesions. The bacteria does not tolerate tropical temperatures.

Keep the bowels moving with magnesium just past bowel tolerance, or we use psyllium husk (metamucil). Fresh squeezed lemon juice with stevia a couple of times a day. DD11 always tics as a herx reaction to protocol changes.

I would definately think the mito supplements could be causing a herx. Perhaps back off them a little and wean up, address inflammation and increase detox. I also feel like no one cares. We don't have insurance and can't afford IVIG, at least you live in a country where it is possible. I hope your appeals go through.

I think I noticed one of your posts on an autism forum a couple of days ago. You said you have a DAN doctor that is doing stool testing - that sounds like a great place to start with the diarrhea symptoms you are seeing. These are the type of doctors that are going to be able to help you. Are you in Poland? I'm glad you found a DAN doctor. If you are in the US you will probably need to find a PANS/PANDAS specialist or perhaps an LLMD in your area. Our daughter lost her speech and fine motor ability after her first MMR vaccination at 15 months. She communicated very well pointing her finger at things she wanted. She was diagnosed at the age of 3 (still no speech at this time) with oral apraxia (an inability to control facial muscles in a way that produces speech). After 3 years of speech therapy using the PROMPT method (the therapist would show us how to move her mouth and tongue to produce different sounds) she had age appropriate speech, and actually a very mature use of language. She has always been very bright (could read at the age of 2, and point out words from books) and very aware of her surroundings, with good eye contact; also very sensitive to light/sound/touch stimuli. She would become very upset at loud voices and did not seem to be able to tell the difference between someone being loudly happy or loudly upset. She cried about everything. I even had to stop playing the piano because she would scream. At the age of 9 she was given a diagnosis of high functioning autism because of her lack of understanding of social cues and age regressive emotional behaviour (she acted more like a 4 year old, tantrums, rages, very low tolerance for frustration, etc.). She wet her bed every other night. When she was 10 she went through a fairly traumatic experience and not long after that, developed the pain symptoms we now know were caused by a bartonella infection. At this time she also had cyclic IBS symptoms (diarrhea) that came and went a couple of times a month. She had terrible urinary frequency, and her teachers would often suggest that perhaps she had an infection. All the symptoms would become worse if she had a strep throat infection. While she was being treated for it the symptoms would get better. After treatment finished they would get worse. We never knew what was causing the problem. We finally found out that she has lyme with a bartonella coinfection and is being treated for it. Her first lyme test (an ELISA test) came back negative, but the second test (a western blot done through Igenex) had a lyme-specific band and a positive bartonella PCR test. Her doctor (a lyme literate medical doctor or LLMD who uses many DAN protocols) has told me that her PANS symptoms (motor and vocal ticcing, some anxiety, not much OCD, loss of fine motor control) are likely the result of this infection causing an autoimmune reaction in her brain. Her doctor thinks she was born with lyme, and that the assaults to her immune system by her vaccinations have only made things worse. At times, when we are using a good antibiotic protocol, all of her symptoms clear up. She is totally age appropriate. At other times, when she is having a reaction to treatment or is not being treated properly, she regresses back to her more autistic-like behaviours. She has been in treatment for almost 2 years now, and does well most of the time, although we have not been able to totally withdraw anti-biotic treatment. We do use a lot of probiotics and she eats fermented vegetables to stop the overgrowth of pathogenic bacteria in her gut during treatment. We are hoping that some day her immune system with improve so that we are able to treat her with herbal antibiotics instead. It sounds like you have come to a conclusion that perhaps an infection of some sort is causing your son's reactions/behaviours. Good for you, not many would have made the connection. This forum is so full of information. Best of luck to you in finding help for your son.

We follow a paleo type diet which, by definition, eliminates grains (including corn), legumes (including soy), and processed seed oils. Heavy on organic greens, root vegetables for carbohydrates, cruciferous vegetables, and as much grassfed meat and ghee, wild salmon/seafood, organic eggs (minus the whites for DD11) as we can afford. Conventional meat should be out because it is likely fed GMO corn, but we sometimes do have chicken breast. I really can't do better than this and keep my sanity. We all probably have GMO genes inserted in our gut bacteria. Will eating non-GMO remedy this? I'm thinking not, if this damage has already been done.

We use 60mg/day CoQ10, but only because I assume DD11 suffers from the mitochondrial disfunction so common in lyme patients. We noticed no real difference in her behaviour, but we started so many different things at once when she started treatment. My husband takes it daily (he is on statin therapy), and I began using it myself a while back. When I first started supplementing with CoQ10 I noticed an improvement in cognition, but I now find that starting or discontinuing it makes no real difference.

Just thought I would excerpt a little more from that paper: "Brain magnetic resonance imaging showed lesions localized to the basal ganglia in 50% of the patients. Elevated dopamine-2 receptor immunoglobulin G was also found in 10/30 patients with Sydenham’s chorea, 0/22 patients with paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection and 4/44 patients with Tourette’s syndrome. No dopamine-1 receptor immunoglobulin G was detected in any disease or control groups. We conclude that assessment of dopamine-2 receptor antibodies can help define autoimmune movement and psychiatric disorders." There is no mention of testing for lyme.

Wow Kim. Just thought I would excerpt a little more from that paper: "Brain magnetic resonance imaging showed lesions localized to the basal ganglia in 50% of the patients. Elevated dopamine-2 receptor immunoglobulin G was also found in 10/30 patients with Sydenhams chorea, 0/22 patients with paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection and 4/44 patients with Tourettes syndrome. No dopamine-1 receptor immunoglobulin G was detected in any disease or control groups. We conclude that assessment of dopamine-2 receptor antibodies can help define autoimmune movement and psychiatric disorders." There is no mention of testing for lyme.

Lilly - take it easy with kefir. You have mentioned several times that your daughter has had significant negative responses to many probiotics. Kefir is quite a potent probiotic and you may run into difficulties.

Thank you for posting. I have been keeping an eye on this as well: http://atguelph.uoguelph.ca/2012/07/gut-bacteria-may-hold-key-to-autism/ and as we do not live far from Guelph, think this may be an interesting concept to follow up on. I am at a loss at the moment however. DD11 follows a fairly strict intense nutrition diet (paleo/Terry Wahls type)with 50 billion probiotic cultures/day from multi-strain supplements. We use lacto fermented vegetables several times a week. Many of the probiotics you mention are not available as supplements, and have pathogenic potential. If you could please share some information on the probiotics/prebiotics you use to successfully prevent PANS symptoms, I know many of us would be interested.

Wow. Will have to try green tea for breakfast/dinner (abx dosing times). Thanks.

You mentioned addressing EMFs and using sauna. Could you elaborate a little please? Thank you so much for the hope you have given us, lyme mom. DD11 is 1 year, 9 months into treatment. We were going along very well until we added 1 drop of grapefruitseed extract for dental plaque. All heck broke out with itching rash, age regressive behaviour and motor/vocal ticcing. I know there is something I am missing, but am still on the hunt. Thanks again.