rowingmom

Which type of enzymes are you finding helpful? Protein, carbohydrate?

I was wondering what symptoms you are referring to when you mention the helpfulness of allergy shots for your daughter? Are you treating a histamine reaction and noticing changes in her PANS reactions, or are you treating the PANS reactions as allergies? DD11 has always had allergic-type shiners, but never a histamine response to anything other than bactrim. No seasonal or food reactions. Our LLMD insists that an allergy is involved. Environmental medicine is one of her specialties, and she does a lot of allergy testing as well as low dose antigen therapy (both sublinguil and shots). We did $350.00 worth of testing last Friday and came away with antigens for neurotransmitters - dopamine, acetylcholine and histamine. I have yet to start giving them. I don't understand any of this really and can't afford the extra $400 per month on top of the $1000 we are already spending on the doctor and supplements, not to mention the new naturopath we go to see tomorrow. The LLMD wants to eventually test for mold/food/pollen as well.

I would also like to mention that there are herbal/homeopathic protocols available if you don't want to go the abx route. They are perhaps not as immediately effective, but some people have luck with them over the long term. DD11 is using one: Byron White protocol. She had a large herx with it when she started out, and we are hoping that it will be able to hold her as we wean off abx now, after 2 years of combinations. With the blessing of our LLMD we are also using the Buhner protocol. His website is here: http://buhnerhealinglyme.com/ I, myself, had a big herx with this when I treated myself for lyme. Joint pains and skin sensitivity to touch that I had never had before. It all seemed to calm down after a couple of months, and I find that I don't not have the mood swings and insomnia that I used to have. If you try these, you want to start at low dosages and work up. If you herx too bad, back off and increase detox - epxom salt baths, sauna, lemon juice. Just a note - do not try the Buhner protocol without using Japanese knotweed. It is a good anti-inflammatory, and completely necessary when the other herbs are taken. Perhaps look for a naturopath familiar with lyme/coinfections to get you started.

I think the important thing is that research on the same cohort of children, a cohort not specifically diagnosed with PANDAS, has been used and is still being used, in studies and reports (2011, 2012) challenging the PANDAS hypothesis. These may appear to be the result of new research, but are actually one and the same. Something to keep in mind when being challenged by oppositional doctors.

Our LLMD wants DD11 to use transfer factor 2x daily. We use Researched Nutritionals TransferFactor Multi-immune. We also used their Lyme specific transfer factor for about 1 year, but the LLMD told us we could discontinue it a couple of months ago. Lyme symptoms have never been a big problem for DD, more bartonella. DD11 started using TtransferFactor Multi-Immune a couple of weeks before her abx protocols began 2 years ago. I noticed at the time that although it didn't help much with the pain/IBS symptoms, she seemed to have more energy, and her executive function improved a little (and believe me, anything positive at that point was very noticable). I remember thinking, as she made a couple of attempts to run on the beach - wow, maybe this is all that will be needed! Ha. So, yes I did notice an improvement.

Is Dr T treating you? Are you taking any abx at the moment? You have said that both times you took abx, you developed C diff. Were you taking any probiotics at the time? Did you use a combination of abx? A lot of our children have taken longer than 8 months on multiple abx to find stable improvement, especially when lyme/coinfections are involved. When you mention shin pain, and heart involvement, I have to think of my daughter's (11 yo) infections. DD11's PANS reactions (urinary frequency, ocd, motor/vocal ticcing, loss of motor control, insomnia) sound a lot like yours. Shin/long bone pain is often the result of bartonella infection.

Our kids can be sooo sweet when they are not suffering!

We are off to see a naturopath this weekend to hopefully get some help on our side of the border. As I was describing DD11's major issues to the doctor over the phone (and I mentioned perhaps that yeast/detox was a factor, but with no test results because of candida testing restrictions in NY) - just to get an idea of whether or not I should even make an appointment - he suggested that he might start molybdenum drops both for yeast and because it would help with the downstream detox pathway. Yahoo! Someone in Ontario who might understand detox, and that we don't have to pay out-of-pocket to see! Anyway, I suppose I shouldn't get my hopes too high, but thank-you, thank-you for your timely post, as well as the mention of dosages. Now I will have a little knowledge when I walk in there. It's sad when we have to become experts about everything.

I would think that if the crying/rage was more than is usually expected, it could be a reaction to new or increased medication. When DD11 is backsliding (because of herx or just adverse reaction to something) increased emotional behaviour is usually our first sign - that and/or ticcing. When she is doing well, things that would have previously caused crying/rage are tolerated, and I think wow..., well done!

We have been using pulsed tindamax for a while, three days a week. We have been finding that the first day will cause a herx, in DD11's case it is mostly increased ticcing and a little emotional lability. Nothing truly horrible happened, although I was quite scared when we first started. The herx tapers off over the next 2 days, and by the fourth day we are back at baseline. I usually give an epsom salt bath the first and third days. We have tried two protocols with tindamax. The first was pulsing tindamax for three days per week, while continuing other abx for the other four. After a couple of months of this DD11 was not returning to her previous low baseline, and her recovery started to slow. Because her ticcing seems to be caused by a buildup of toxins, we felt that she wasn't able to detox properly from the tindamax pulse while her body was dealing with other abx during the rest of the week. The next protocol involved giving all abx in pulsed fashion, along with tindamax, for 3 days/week. After several weeks of this, she was no longer herxing during pulses, and remained at her very low baseline. I thought we were done, but then added one drop of grapefruitseed extract! which has increased the ticcing again. Everything else remains at a very low level.

When I approached our Ped Psychologist in Southern Ontario, I was told that in all likelyhood my daughter had PANDAS, but that she would not test titers - they would be high because of her recent infection. She also told me that we would not be eligible for IVIG unless my daughter was completely incapacitated, which she was not. Our PCP told me that a lyme diagnosis is just a money grab by the diagnosing doctor. Our health care system (one of the best in the world, I hear) is useless for lyme/PANS.

I completely understand you airial95. Being lost in that sea myself, it is obvious, to me, that treatment for lyme and its coinfections is very different from treatment for strep induced PANDAS. We all require a knowledge of detox, MTHFR, gut/immune system interactions etc. and how they can effect PANDAS/PANS reactions, but treatments for each are very different - abx combos, IVIG, PEX, steroids. As a mother of a child with lyme induced PANS I spent a lot of time on the PANDAS/PITAND forum and learned plenty about my daughter's reactions - I have probably spent equal time on both forums. But there is much more to lyme/coinfections than the PANS reactions it can cause. If we were dealing with strep only or mycoplasma only, I would perhaps not appreciate having to wade through all the talk of lyme, especially that focusing on lyme/co bacterial/viral/protozoan treatment as opposed to treatment for the autoimmune side of things. I had no trouble consulting both forums, as I think most parents with lyme/PANS children probably did. I really didn't think that double posts were necessary as I looked at both forums each day and was able to put 2 and 2 together (but I do appreciate you truely knowledegable folks, however, wanting to cover all the bases). I do see how some newbie lyme parents might not grasp all the concepts at once, and may miss things about PANS posted only on the PANDAS forum. I think there does need to be a place to talk about the treatment of lyme/coinfections in children seperate from that place addressing autoimmune brain reactions. They are not always one and the same.

Sorry, but I really don't understand the concept that Bb can produce manganese. Manganese is a trace mineral and you shouldn't have high levels unless you are oversupplementing, or being poisoned in some way. Do you perhaps mean that Bb could have sequestered manganese and that high levels were released with die-off? We have never tested for manganese, iron levels are normal.

Sorry, I don't mean to hijack, but which houttuynia are you using? HH2 or the regular strength? Thanks so much.

This is the doctor you are referring to? http://lymemd.blogspot.ca/ His blog says he is moving to Rockville and gives a phone number.

I know you mentioned you are not taking the lyme route, but...DD11 had intense stomach pain and cyclical IBS symptoms (once a week or every other week) that I could not pin down. She tested positive for bartonella, and as soon as treatment for that began the IBS/stomach pain disappeared, and has not returned. Stomach pain/IBS can be symptoms of bartonella.

I think your outcome with abx is a true indicator that you are dealing with infection-based psychiatric difficulties, the possibility of which will be denied by most mainstream doctors/psychologists. It's so good to get a glimpse of your real child, isn't it? It's what keeps most of us going. Symptoms will be up and down during her treatment as your doctor gets a handle on which infections you are dealing with, and which abx/supplements will best help her - so don't lose the faith/hope you have at this moment. You are on the road to making your daughter the very best she can be!

I think I would head to a LLMD. Most of them would be open to the idea of PANDAS, and do proper testing for you. We are dealing with PANS/Lyme.

Please check out this post, you have perhaps already seen it: http://www.latitudes.org/forums/index.php?showtopic=19760 Our stories are usually long and varied, so you may not get too many responses to a request for histories - it just takes too long to compose. Please take a look back through the Lyme forum postings, and the PANDAS/PITAND/PANS one as well. Many (but certainly not all) children have presented with autoimmune PANS symptoms long before they are diagnosed with lyme and coinfections. This happened for us, with DD11 reacting to both bacterial (strep) and viral infections with rages, frustration, ADHD, sensory difficulties, some OCD, motor/vocal ticcing, decreased motor abilities, urinary frequency, decreased executive function, social regression (all PANDAS symptoms) before her physical lyme/bartonella symptoms (fatigue, headaches, long bone and foot pain, night-time fevers, insomnia, cyclic IBS, dizziness, anxiety attacks, tingling hands and feet, hot/cold flashes) started at age 9. After 2 years of treatment she no longer has these reactions, and her pain, fatigue and other symptoms have mostly resolved. She is functioning properly in school, has friends, enjoys celtic dancing, curling, girl guides, and has a B+/A average in grade 6. When you are up and running with symptom descriptions, you will be much more confident in observing behaviours/symptoms in your son. If he is not showing symptoms, BE HAPPY! If he starts, get help from a LLMD, LLND or PANS/PANDAS specialist. Most mainstream physicians/psychologists will not be too helpful or understanding. You can't change the fact that your son may have a lyme infection, but if you were treated while pregnant there is a possibility that he does not. Keep an eye open for lyme/pans symptoms, and stay informed. If he begins showing symptoms, you will be so far ahead of the game in just knowing where to seek help. So many of us have struggled for years to figure out our children's problems. You are his biggest advocate.

I tried inulin, but found it caused too much gas/bloating. It certainly was easy to hide in food/drink as it doesn't thicken, but we ended up using psyllium husk instead. Isn't it great when you find something that works? Perhaps inulin may work more efficiently now that DD11 has been taking probiotics for a while. Thanks for posting.

Good for you. I hadn't seen it, so it was not on my radar. Could you provide the link? Thanks.

Yes. DD was sensitive to light/sound/touch from birth, with excessive startle response and much crying (ie screaming for hours during car rides, but would stop when the car stopped). Although she slept fairly well at a young age, while she was awake she was constantly moving, as though uncomfortable. She did not crawl, but stood and walked at 9 months. She was quite hypotonic and always sat in the W position. She suffered from febrile seizures from 6 months to 6 years. She was on the lower end of the growth charts and did not grow much hair for quite a while. Other than that she was meeting all of her milestones, and more, before the 15 month MMR.

My DD (now 11) has had problems since birth - most of the symptoms Dr J lists for congenital lyme - and our LLMD feels that she was indeed born with lyme. The immune system is so important for keeping lyme in check. My feeling now is that DD11's poor response to vaccinations (loss of speech and fine motor control beginning 4 days after the 15 month MMR) was probably the result of her infection(s). That her immune system was overwhelmed by the combination of vaccination and infection, resulting in autistic-like symptoms, which, by the way are resolving, even at this late date, with treatment. Please educate yourself on the problems which can be caused by multiple vaccination. If I had it to do over again, I would insist on at least separating the MMR vaccination into it's single components and spreading out the injections. It sounds like you are using a LLMD for your treatment. You have a good resource there, both for yourself and your son. Keep the LLMD up to date with your son's milestones, and they should be able to reassure you whether all is well, or if something needs to be addressed.

That helps a lot.

From Reuters: http://www.reuters.com/article/2013/03/12/us-fda-zithromax-idUSBRE92B0LR20130312?feedType=RSS&feedName=healthNews&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+reuters%2FhealthNews+%28Reuters+Health+News%29 "In its warning, the FDA said the drug can alter the electrical activity of the heart, which may lead to a potentially fatal heart rhythm known as prolonged QT interval, in which the timing of the heart's contractions becomes irregular. The FDA said doctors should use caution when giving the antibiotic to patients known to have this condition or who have certain risk factors. The at-risk group includes people with low levels of potassium or magnesium, a slower-than-normal heart rate, or people who take certain drugs used to treat abnormal heart rhythms, or arrhythmias. The drug could also cause problems in people with torsades de pointes - a specific, rare heart rhythm abnormality. The FDA noted that other drugs in the same class as azithromycin known as macrolides also have the potential for causing QT prolongation, as do non-macrolide antibiotics, such as fluoroquinolones, and doctors need to consider all of these risks when choosing an antibiotic."