rowingmom

We also saw an initial improvement in behaviour by treating strep infection with 1 antibiotic. The improvement was noticable within a day of starting the antibiotic and continued the length of time we were treating. The symptoms then came back. After the start of the second administration (even though the strep swab was negative) symptoms again resolved, but started coming back while still on the antibiotic. It wasn't until we used combined abx therapy that we saw a real herxheimer reaction (die-off reaction resulting in an increase in symptoms - an increase above pretreatment levels) and then a more prolonged resolution of symptoms and raging. My feelings are that you are on the right track thinking that your son's reactions are the result of infection (or brain inflammation resulting from infection). This forum is full of examples that this condition does actually exist, even though most mainstream doctors/psychologists refuse to believe, and continue trying to suppress symptoms with psychoactive drugs.

Wow, you poor thing! Lice too - they used to be my greatest fear before we discovered bartonella. Now I would gladly exchange the bart for lice. Not sure what I would do with both! Before treatment DD had definate trouble sleeping and often complained of palpitations and racing heart. Both of these symptoms resolved after a couple of months of biaxin/rifampin. We also used low dose melatonin with her, just to get her to sleep. We have weaned from that now. She takes about 300 mg magnesium taurate per day. Hang in there.

This makes it obvious to me that the behaviours resulting from PANDAS/PANS are linked with infection/immune response and should be treatable as such. Too bad many doctors don't understand this.

Definately yes. While she had fevers, all of DD11's symptoms (including bartonella pain and fatigue) were decreased, only to return after the fever had resolved. This included motor/vocal ticcing, raging etc. I think this has been discussed a couple of times over the last 2 years that I have been here. Try the forum search engine. I think the consensus is that, generally, many of our children have inadequate fever response to infection.

Now that you mention it, my Dad was a little flighty . . .

Emotional lability/increased raging were one of DD's herx reactions. 3-5 days after changing a protocol seems about right.

DD11 has a wonderful rote memory, she forgets almost nothing. She has extremely good expressive speech because of the vocabulary she has amassed from constant reading. During the time she was struggling with her PANS symptoms however she had trouble doing simple addition and subtraction, had a very hard time grasping new math concepts (which let to MUCH frustration), executive function was non-existant and she lost spatial ability. Her non-PANS brother, on the other hand, is very good at math. My father was an engineer, my mother not so much! Hubby and I are biologists, so not too math oriented. @ Ophelia22 - have you tried needlepoint or other needlework? DD finds it very calming.

For how long has your DS been taking 1000 mg biaxin?

DD11 was 65 lbs and taking 250 mg BID in combination with rifampin (150 mg BID) and pulsed tindamax.

Sorry to be picky, but I don't think mycoplasma have flagella, and so are probably not responsible for a band 41 response. "Mycoplasmas are parasitic bacteria with a small genome and no peptidoglycan layer. Several mycoplasma species have a distinct cell polarity characterized by a protruding membrane extension, the attachment organelle. They are able to attach to and glide on glass, plastic, and eukaryotic cell surfaces, always moving in the direction of the organelle. The gliding mechanism is unknown. Mycoplasmas do not have any appendages such as flagella or pili or any genes obviously related to motility, including motor proteins such as myosin or kinesin. However, a transmembrane protein associated with a cytoskeleton-like structure has been shown to be necessary for glass binding in Mycoplasma pneumoniae." J Bacteriol. 2002 April; 184(7): 1827–1831. M. Miyata, W.S. Ryu, and H.C. Berg. Force and velocity of Mycoplasma mobile gliding.

We tested monthly. DD11 was only out of range once, at the beginning of her treatment. We started using milk thistle and never had another problem.

Wow! Two years ago our pediatric psychologist suggested PANDAS, but wouldn"t test titers. She said they would be high because of the strep infection DD had one month prior. We were told we could only get IVIG if DD was totally incapacitated, which she wasn"t, she was still walking. I bet they are not treating PANS caused by lyme/bartonella with IVIG. We are not even allowed to treat lyme and it's coinfections with extended abx protocols in Canada. "When I visited, his supply of prophylactic antibiotics from NIMH had run out.....and Margo was having trouble convincing Sammy’s Edmonton pediatrician to prescribe them". I wouldn"t plan that trip just yet!

Rifampin is used by many LLMDs to treat bartonella, which we think was the major cause of DD11's PANS symptoms. An increase in herxing with rifampin could indicate bartonella infection. You have not mentioned whether or not your son presents with other symptoms that could indicate bartonella: long bone pain, pick-like headache, night-time fever, stomach pain and IBS type symptoms as well. DD11 was suffering from all of these as well as PANDAS symptoms (see my signature line below). It has taken us 2 years of combination abx treatment to bring her IgG bartonella titers from 120 to 80 (which is still positive). Her symptoms, including motor/vocal ticcing, have resolved at this time. Don't use rifampin on it's own, only in combination with other abx. The chance of developing resistance is greatly increased when it is used as monotherapy.

I am definately able to correlate DD11's amount of ticcing (daily Excel charting and graphing) with amount of die-off and an inability to detox. The more killing we did, the greater her ticcing. During continuous tindamax treatment (which I think did the most toward decreasing her bacterial load) we saw ramping of motor/vocal tics which would not resolve. It didn't matter how much detoxing (epsom salt baths, lemon juice, psyllium) we did, the ticcing would not let up (curcumin and phosphatidylcholine did help her a little though). It wasn't until we started pulsing, and her body was able to detox the die-off, that we saw a decrease in ticcing. A definate increase during the 3 treatment days, and a resolution during the 4 days off. We never tried psych drugs to counteract the ticcing - I was too scared. Unfortunately, to deal with these infections the killing of bacteria and the resulting die-off has to happen. If herxing and ticcing gets too bad, I think we need to ease up a little on the abx and let the body decrease the amount of toxin buildup.

We use Advantix (permethrin) for a couple of months in the spring for emerging ticks, and Revolution (selamectin) for the rest of the season for heartworm, ticks, fleas. A couple of weeks ago I found a brown dog tick staggering across the floor - it had obviously been effected by the Advantix I had applied to the dogs. It was not looking well. For this reason, I use permethrin spray (purchased at REI) for dog beds and all clothing worn in areas where we will be exposed to long grass or woods, and on all of DD11's clothing when she attends horse camp. Our vet mentioned at our last visit that long-term (2+ years) continual use of Revolution is now being used to treat heartworm infection, not just as a preventative. I couldn't find any reference about that on the internet, though. About other TBI's I don't know. Ivermectin is used for the treatment of some parasitic infections in animals as well - against borrelia, bartonella, babesia, IDK.

I have found during the last couple of years that a gut feeling is something you need to explore, if only to relieve your mind. Go to a LLMD and get some proper testing for lyme/coinfections. Especially for bartonella, if raging/emotional lability is a problem that hasn't been resolved with PANDAS treatment. Bartonella treatment requires higher doses and concentrations of abx. We also saw dark eye circles, they have improved greatly, along with everything else during treatment. It has taken two years of lyme/bartonella treatment, but after weaning off abx on April 15 we have not yet seen a relapse (knocking on wood). In fact we see continual improvement and are at a new low life-time base-line for her PANS symptoms. Her frustration/raging is non-existant and she has had a huge leap in executive function. We tried removing combo abx 6 months into treatment and saw a gradual relapse starting within a couple of weeks. Before lyme/bartonella came on our radar, treatment for strep would resolve her symptoms, but they would return within 2 days of discontinuation. We will continue charting and using lyme/bartonella herbal, methylation, and detox protocols.

Have you ever tested for lyme and coinfections with a LLMD? Lyme and bartonella are notorious for down-regulating the immune system and allowing other infections to proliferate. It sounds as if you have been working on strep for a while and not seeing much in the way of results. When DD11 reacted so obviously to strep, and improved with strep treatment, I was sure we were dealing with PANDAS. But because we were unable to find treatment for PANDAS in Ontario we headed across the border to a LLMD. 2 years worth of bartonella treatment has improved her PANDAS to a huge extent.

I noticed a body odor on my daughter before she began treatment and found it most noticable in her bed clothes in the morning. It wasn't urine (didn't have a true ammonia smell), although she often struggled with night-time enuresis. It wasn't the odor that you associate with adult BO, either. This went on for several years before her pain symptoms became so obvious that we had to seek help. I don't think hers was directly associated with skin colonization, but rather the inability of her body to handle the toxins produced by her internal bacterial infections. Because of her genetic (or perhaps infection induced) tendancy to under-methylate, her body was unable to detoxify and get rid of the build-up as it should, resulting in an accumulation in her tissues (including the skin) which presented as an odor. The odor resolved shortly after she began treatment and has not returned.

In my thoughts and prayers as well.

DD11 presented to our LLMD with all of the PANDAS symptoms except OCD. She had significant motor/vocal ticcing and her symptoms were exacerbated by strep infections and declined with strep treatment. We were not able to access IVIG because we live in Canada, even though her pediatric psychologist suspected PANDAS. I would likely have gone in that direction if it had been available to us. We were not allowed PANDAS testing either. She also presented with bartonella pain symptoms - shin, forearm, bottom of foot, and pick-like head pains. Our LLMD has always insisted that DD's PANS symptoms would resolve with lyme/coinfection treatment, and after 2 years of multiple abx treatment ($1500/month including testing), she is at a new low, life-time baseline 5 weeks after weaning off all abx, except herbal/detox/methylation protocols. We will remain on these indefinately.

We pay out of pocket for our LLMD visits, supplements, blood tests and abx. Being Canadian we have no insurance in the US. We do not see a PANDAS Dr, but treatment for lyme/bartonella has resolved DD11's PANS symptoms. We could never afford IVIG in a US hospital, and it would not be offered to us in Canada. We pay $1500/month for treatment, but it has been SO TOTALLY worth the price. We see our LLMD once a month. We never go on vacation. I saw the new Star Trek movie tonight though!

Our LLMD gave us Virapress saying a couple of her other patients had good luck with it. She wanted DD11 on 7 drops 2x daily. It sounds like the same thing (extract of bovine serum). http://virapress.com/ Before I gave it to DD, I experimented on myself (1 drop per day for 3 days) and had a huge systemic inflammation reaction - muscle aches, joint pain, like I had the flu only no congestion. It took about a month to resolve. The dose I used was very small and after thinking about it for a bit, the prion issue made me nervous as well. If course I had already taken it before thinking of that so...what the heck...it's only my brain. I have found that ColdFx works well for boosting the immune system. A Canadian product, not sure if you have it in the States - an extract of American ginseng. If I feel like I am coming down with something I use this and am better within a day. http://cold-fx.ca/health_mechanism.htm Astragalus can also stimulate the innate immune system and Buhner suggests it's use for treating lyme infections. He also mentions that it should not be used in high doses in chronic lyme because it causes too much of an inflammatory immune reaction. I experimented on myself with this one as well. The dose Buhner suggests for treating lyme is 1 capsule 3x daily. On the first day I felt like a new person. I actually did cartwheels in the backyard (I am 51) and felt like a teenager - I had found the magical elixer! The next day, the same. The third day I felt like a truck hit me. Just as I had with the low dose Virapress. Aches, pains, fatigue (perhaps it was all the cartwheels, but I don't think so). Two months to recover from this experiment, and that was with daily Advil which really didn't help, Tylenol didn't either. We now use Astragalus (Nature's Way) 1 capsule Mon Wed Fri, and ColdFx 1 capsule Tues Thurs Sat along with an allicin extract daily. I myself feel the best with this. Research a little on astragalus. Buhner is very impressed with it.

DD11's herx reactions pretty much included all her previously presenting symptoms, but magnified as if in a flare. Emotional lability, rages, increased motor/vocal ticcing, shin/forearm pain, headache. OCD has not been a real problem for her and did not appear during her herx reactions.

Resistance to rifampin develops quickly if not taken in combination with another antibiotic.

You might want to start a new post - looking for doctors in NJ.