rowingmom

Thanks Ozimum. I feel much better knowing that this information isn't something new and different for parents on this forum. It's a shame knowledgable doctors are so few and far between,

The anti-inflammatory japanese knotweed helped us so much with herx-induced inflammation. If you are dealing with lyme and co, and not averse to using herbals, please consider purchasing Stephen Buhner's more recent books on the herbal treatment of multidrug resistant bacterial and viral infections. As well as his mycoplasma/bartonella coinfection book. Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria Herbal Antivirals: Natural Remedies for Emerging & Resistant Viral Infections The coinfection book describes in detail how inflammation effects the body, and how the specific herbs he uses help to dampen this response as well as modulating the immune system. And this is apart from their antibiotic action. I truely believe that DD has shown the improvement we have observed because I used knotweed throughout her abx treatment. We are seeing further gains with his complete bartonella protocol after adding cryptolepis for protozoan/viral infections. I know you are dealing with ehrlichia, but the main herbs he uses for viral and bacterial infections seem to be the same. These herbs have wide coverage and application. You will not be disappointed.

Thanks LLM. From the glowing reviews I read on Amazon, I thought I had missed something really important. For most the idea that nutrition/methylation effects psychological function seemed to be a new concept.

I will be interested to hear whether or not you are successful with your request for long term abx. I understand that the College of Physicans doesn't allow this type of treatment. We were refused IVIG as well because DD was still fairly functional. Hopefully things have progressed in the last couple of years and you are able to find proper treatment. I had no alternative but to seek help in the US. DD's PANS reactions were the result of a bartonella infection, so yes, we treated mostly with multiple combination abx with some herbal protocols/anti-inflammatories and supplements for her MTHFR deletion (methylated B's) to help the detox cycle run more efficiently. I don't mean to be a party pooper, but advocating for proper treatment with doctors that don't understand is a waste of your time. For this reason most of us see lyme or PANDAS specialists. Take a look at the archives for lots of information on MTHFR. LLM is our resident expert. http://www.dearpharmacist.com/2013/08/08/2394/ And for some light reading (just kidding): http://www.heartfixer.com/AMRI-Nutrigenomics.htm Never give up the thinking thing. It is necessary even with the specialists. I do sometimes long for the good old days when I thought our family doctor was capable of fixing all our ills.

How informative is Dr Walsh's book? Would you recommend purchasing it?

Please don't assume that PANS/PANDAS is always caused by strep. If the tests don't point to strep look elsewhere: bartonella, mycoplasma, viruses.

I am leary of discontinuing DD's bartonella treatment. She is off abx, but I won't discontinue herbals until she no longer has any symptoms or herxes with protocol changes. DD12 is functioning wonderfully. Happy, little emotional lability, no ticcing, getting B's/A's in school with no help from me or accomodations from the teacher. Has friends, plays piano, dances, horse rides. Is a normal kid. But bartonella is still there, lurking. I know from the little herxes produced by ramping A-Bart. By taking the weekend off supplements and then Mon/Tues showing an uptic in symptoms which resolve by Thurs/Fri. http://pediatrics.aappublications.org/content/121/5/e1413.long For this reason we will not be discontinuing treatment for a looooong time.

Just wondering why you think it causes depression? I've never heard of that, though both by son and I had serious herxes when we took it 4 times a day. His anxiety went through the roof for that month - it was very clear that it went way up the first day and went way down a couple of days after he dropped down to once a day. For me it was pain - terrible pain for the month I was taking it 4 times a day, but then once I decreased to once a day, my pain level dropped to far below what it had been pre-treatment. Depression is probably another part of the herx that you observed mama2alex. My herxes usually involve depression/anger, DD's anger.

We never used augmentin but did use a continuous combo of azith/mino/malarone/plaquinel which after 3 months was changed to a pulsed protocol also including tindamax. We never used azith alone, but the above combination resulted in a huge improvement for DD, and this was after 1 year of biaxin/rifampin. Not sure if it was malarone addressing an undiagnosed protozoan infection (I am seeing further gains with the protozoan herb cryptolepis), the proper abx combination, or the anti-inflammatory actions of the included abx.

Unlike LLM's son we were able to continue pulsed tindamax for about 4 months. My observation of progressively smaller herxes (until at the end DD wasn't reacting at all to the addition of tindamax) makes me think that, in our case anyway, what I was seeing was a herx. DD has never had symptoms of lyme and all of her herx reactions to tindamax were bartonella-type symptoms (shin pain, emotional lability, raging) and ticcing.

We use SourceNaturals turmeric with Meriva (a blend of turmeric and phosphatidylcholine) which is supposed to make the herb more bioavailable, along with another herbal anti-inflammatory, japanese knotweed. Addressing inflammation is really important for our kids and does help decrease the symptoms produced by brain inflammation. Augmentin may have some anti-inflammatory action but also is a good broad spectrum beta- lactamase inhibitor. You may be addressing undiagnosed infections while using it. Just curious if you tested for the lyme coinfections - bartonella, babesia, ehrlichia - or just lyme? Wonderful that you have found help with someone who understands methylation. Please keep us updated on how your vitamin supplementation progresses. Does Mensah Medical address possible mineral deficiencies as well? Some of the MTHFR deletions increase the requirement for magnesium (to help methylation) and molybdenum.

Are you still using rifampin as well, or just azithromycin alone? Was he able to handle the rifampin along with the other abx started in June? Did he herx with that combination? DD's first herx was a doozie, but didn't last more than about 2 weeks. And that was only with biaxin. The successive ones where shorter (3-4 days) on combinations which included biaxin/rifampin, biaxin/rifampin/plaquinel, biaxin/rifampin/plaquinel/pulsed tindamax, azithromycin/minocycline/malarone, azithromycin/minocycline/malarone/plaquinel/pulsed tindamax. Only when we added tindamax to the combinations did DD have trouble detoxing. For that reason we were forced to pulse. DD does have a MTHFR deletion that we supplement for with methylated B vitamins. If what you are seeing is a herx, perhaps azithromycin is too much (like tindamax was for us) and needs to be decreased to allow his body to detox. Do you use any detoxing protocols (lemon juice, magnesium, epsom salt baths, psyllium husk to keep toxins moving out)? Have you tested for methylation defects? Good to hear that you are seeing speech results, but this may be in part due to the anti-inflammatory effects of the antibiotic as well. http://blogs.nejm.org/now/index.php/azithromycin-for-prevention-of-copd-exacerbations/2011/08/24/ "Why azithromycin? The macrolide antibiotic has anti-inflammatory and immune-modulatory benefits (which is why it is given to patients with cystic fibrosis and bronchiectasis) on top of its antibiotic action. However, studies have been split on the question of whether long-term antibiotics benefit patients with COPD". Does your son respond to anti-inflammatories?

Wow. BID for a week would have sent DD for a real loop, and this was after 1.5 years of treatment of biaxin/rifampin with some other things added at times. We couldn't do more than 1/2 dose BID for 3 days. The herxes kept building and building if we didn't pulse for short intervals (3 days on, 4 off). Emotional lability was definately one of her herx symptoms (along with ticcing and bone pain). Our LLMD pulsed tindamax with a couple other abx for about 4 months. Each successive herx starting each 3 day "on" period resulted in smaller and smaller herxes. When there was no more herxing DD weaned off treatment.

Not with lyme, but bartonella: http://www.ncbi.nlm.nih.gov/pubmed/17982727 We describe a case of an 11-year-old girl who presented with osteomyelitis of the vertebrae and right femur due to Bartonella henselae. Her only symptom was prolonged fever without focal pain. Magnetic resonance imaging (MRI) and nested polymerase chain reaction (PCR) were useful for the diagnosis. Osteomyelitis due to B. henselae should be considered in cases of prolonged fever of unknown origin. http://pediatrics.aappublications.org/content/121/5/e1413.long Bone lesions are a rare complication of infection with B henselae. Often, these lesions are osteolytic, and occur as an osteomyelitis. Clinical manifestations of bony disease include pain and tenderness over the affected bone and lymphadenopathy.

I would suggest an anti-inflammatory as well. I have seen significant decreases in raging and emotional lability within 20 minutes of dosing 3/4 tsp japanese knotweed tincture (DD was 75 lbs at the time) . Others have found ibuprofen to be helpful. I don't think anti-inflammatories ever come amiss with our children.

Your Ontario pediatric neurologist understands and confirmed PANDAS? Does she use any of the accepted treatments (long term abx, IVIG) or just clonidine to help with symptoms? I guarantee that she is constrained from using abx long term and our ped psych told us that IVIG could not be prescribed unless our child was completely incapacitated. Our ped psych (Niagara Falls, ON) is now a PANS/PANDAS believer. I have kept her updated with DD's diagnoses, treatment and responses, and she has collaborated with Dr L in Bethesda MD on at least one project. She has gone so far as to petition the Ontario College to allow the accepted treatments. She was rejected and, practicing in Canada, she realizes there is nothing she can do to help the children she sees suffering from this syndrome. There is at least 1 family doctor in St Catharines familiar with PANDAS (from South Africa), but again is unable to treat. He sends his children to our ped psych, who is unable to treat. It's a mess. From my perspective (and my perspective only) there appears to be more than one reason for the Tourette's-like symptoms associated with PANS/PANDAS. The accepted PANDAS theory suggests that antibodies crossing the BBB are responsible for an autoimmune attack on portions of the brain regulating motor response and behaviour, resulting in the inflammation, ticcing and other symptoms that are indicative of the syndrome. From our experience with DD's responses (charted daily against treatment for 2.5 years) to both antibiotic and immune boosting treatments I have found ticcing to be associated with bacterial die-off, either caused by abx or the response of her own immune system. I believe, in our case as the gram negative bacteria (bartonella) died, endotoxins were released which increased inflammation, both in the body (flu-like symptoms) and the brain (ticcing, emotional lability). Given several (3-4) days to recover from the buildup of endotoxins (with the help of supplements to help with the MTHFR deletion and detox protocols including epsom salt baths (magnesium), lemon juice and psyllium husk) DD's ticcing would subside. Before we began treatment I think DD's ticcing was the result of her immune system causing bacterial die-off and the resulting brain inflammation from endotoxin release. During abx treatment we would consistently see increases in ticcing with increased abx concentrations or changes in protocol. We also saw increases with immune-stimulating supplements (high doses of astragalus). Endotoxin release stimulates antibody production, but I don't think in our case the antibodies were the causative factor of ticcing. I think it was the endotoxins themselves. The resolution of ticcing within days of discontinuation (after the bacterial load had been decreased sufficiently by treatment) was too short a time frame to be the result of antibody fluctuation. We saw the similar initial response to strep antibiotic treatment that you did. During the first 10-day round of penVK most of her symptoms (including ticcing) resolved to return approx. 2 days after discontinuation. During the second 10-day round her symptoms again resolved, but then returned before the end of the round. With most of the abx protocols we have undergone I noticed an initial 1-4 day resolution of symptoms, then a flare which I associate with die-off, and a gradual resolution of ticcing as DD's body was allowed to detox. With the use of stronger abx (ie tindamax), time to flare was reduced to perhaps within a couple of hours and time needed to return to base-line was prolonged (and ultimately required pulsing off the treatment). If you think your child has PANS/PANDAS and you want to treat with something other than clonipin, you will need to leave the country.

That's the IDSA for you! They really don't understand PANDAS/PANS.

I just love all the parents on this forum. They don't take "no" for an answer and they don't give up. Good for you, and great for your son!

Our daughter's Igenex WB was negative for lyme, although she did have one lyme-specific band return as weak or IND. She did however test positive for bartonella hensalae with Igenex. Bartonella was the cause of her PANS symptoms. She is now 98% improved after abx treatment.

I originally thought DD's many different behaviours were the result of her just being a quirky child with ADHD, aspergers and some ticcing (and well, raging, bedwetting, motor delays etc.). I also noticed that most of her symptoms disappeared with abx treatment (penicillin) for a strep throat. It was a WOW moment. A that point I started thinking her behaviours were perhaps due to an infection of some type. But it wasn't for a couple of months until we got in to see the Pediatric psychologist that PANDAS was suggested to me, and a couple months later that I found a possible association between her multiple psych symptoms and lyme (here on this forum - Yay!). Then off to see the LLMD where we learned that her PANS was caused not by lyme, but by bartonella. And it wasn't for a while after that I remembered a bug bite with a rash approximately 1 month before her ticcing started. I just love the parents who end up here one week after the beginning of OCD or ticcing symptoms. It took me 2 1/2 years to figure it out.

With Japanese knotweed we had to dose 1/2 tsp 3x daily (either as decoction or tincture) to see improvements. I found quick resolution of flare symptoms with a single double dose. DD is 80lbs. The SourceNaturals tablet didn't work well for us. Powdered herb for decoction (tea): 1stChineseHerbs organic powdered herb ($15/lb - enough to last 6 months) Tincture: WoodLandEssence ($40/oz - enough to last 1 month, less if you use higher dosages than we did). Buhner suggests both of these sites for sourcing herbs for his protocols. Scary about the substitutions found in herbal supplements, but I believe these sites are on the up and up.

We used it for a while at the recommended dosage along with our other favourite anti-inflammatory (japanese knotweed) also at a low recommended dose. I didn't notice much of a difference in behaviour with the addition of lutimax, and definately not the same good response we got from doubling the dose of knotweed. Perhaps we should have tried a higher dose. The information on that supplement is quite interesting.

I've been using the one LLM sent me the template for 2 years ago. It's the best way to visualize and describe treatment/response to your doctors. Can't thank LLM enough for sharing her moments of genius.

Wonderful, wonderful post 3bmom. Uncommon psych behaviours don't happen out of the blue, for no reason. There needs to be more understanding of the "onehealth" initiative out there. http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

Agree with PANS as well. In the fall of 2010, before treatment had started, DD (then 9, grade 4) forgot how to hold her pencil. She couldn't remember the grasp. I had to search the internet and find a youtube video that explained it. Only after watching this for some time was she able to reconstruct the motor movements. Motor abnormalities were a constant issue for DD. These included oral apraxia (loss of motor ability in the facial and tongue muscles resulting in loss of speech), inability to pedal a bike (one foot would pedal forward while the other insisted on pedalling backward). Some of this may have been simply age-related, but definately abnormal among her peer group.