Christianmom
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My DS17 is on the following as treatment for KPU/HPU:
1. CORE by Biopure -- 4/day with dinner
2. Borage Oil -- 1,000 mg. -- Pure Encapsulations -- 2/day
This article describes Dr. Klinghardt's protocol for KPU/HPU:
http://planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/
Of the "required" things in the protocol, all seem to be in the CORE and borage oil that my son is already on except for the magnesium. The CORE has only 10 mg. of magnesium in it.
Of the "optional" things in the protocol, it seems that perhaps my son should be on Niacinamide since his symptoms are mainly severe OCD. He is on a basic B complex (Thorne Lab; 2/day), but it only contains 130 mg of niancinamide/tablet--no where near the "1000 mg three times per day for psychiatric symptoms " that the article suggests.
I was also wondering if my son should be on the "High Gamma Vitamin E" that the article suggests. He is not taking any vitamin E except for the 2 i.u in the borage oil.
I was wondering what others are giving their children for KPU/HPU treatment. By ART testing, my son's KPU is doing well, so perhaps I am wasting my time thinking about this. But I would appreciate anyone's opinion as I feel KPU is/was a big issue for my son.
Thanks!
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About the only things he's forgotten in the last few years are the worst days and events that took place when PANDAS was at its height, and that's probably a good thing.
My son as well has completely forgotten the worst days of his illness. On a bad day, when he isn't feeling well, he'll say things like, "I'm really doing bad, Mom. I'm just as bad as I was in the beginning." I have to tell him that he isn't doing anywhere near that poorly. He doesn't remember the "beginning" though he thinks he does. God in his grace has left my son with no memory of the worst, for which I will forever be grateful.
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My DS17 goes to a Klinghardt-trained doctor, Dr. Schwartz, in Jenkinstown, PA. We began going to him in January of this year. The first thing he put my son on was the following treatment for parasites:
1. 14 days -- Ivermectin Avicel -- 9 mg capsules -- 4 per day (specially compounded at Key Pharmacy near Dr. Klinghardt)
Pyrantel Pamoate -- 400 mg. capsules -- 2 per day (specially compounded at Key Pharmacy)
2. 14 days -- Albenza -- 200 mg. tablets -- 2 per day
3. 14 days -- Alinia -- 500 mg. -- 2 per day
Dr. S would not treat my son's lyme (except for keeping him on the Biaxin he was already on from Dr. T) until this treatment was finished and the parasites tested as gone by ART.
My son was doing very, very poorly when we first starting treatment with Dr. S, maybe functioning at 30%. After the parasite treatment we noticed immediate improvement in some things, but certainly not everything. For instance, he could play the piano much longer without his OCD being set off (30 minutes instead of 10), he could do simple tasks without much trouble, he didn't mind washing dishes (before he hated anything to do with water), he was able to write simple sentences (couldn't before because of severe OCD). But overall my son was still far from living a normal life for a 17-year-old.
Since the parasite treatment, Dr. S has treated my son for h. pyroluri, KPU, lyme (Klinghardt "lyme cocktail"), bartonella, babesia, strep, methylation, and yeast. My son has continued to improve, reaching a level of about 60% of where he was before being sick. He's now doing simple tasks with no problems, and is able to do difficult tasks (like Calculus) slowly, if I sit beside him (can't do it alone). He has also taken an interest, for the first time, in getting his learner's permit. This is a big, big step for him. But still, my son is far from where he was before getting sick. I would say he is at about 60%. He still has many, many obsessions/compulsions when he tries to accomplish anything difficult, if he is alone. Dr. S feels the lyme will need to be treated for at least another year with the "lyme cocktail" as well as the K.Bart, K.Bab. etc. for bartonella and babesia.
Dr. S has now added an aggressive viral protocol for EBV and CMV. My son's only been on this protocol for a couple of weeks, so it is hard to tell if there is improvement yet. Interestingly, the only "herx" my son usually gets is that the "wanting to wish his hands" comes back, but only at night. Then it goes away. After that we usually see improvement. My son is also on a 30-day course of minocycline for strep (can't seem to lick strep; my son is asymptomatic), and Dr. S is considering taking out my son's tonsils. We will talk about this on our next visit. (Really hoping to not have to do that.)
The parasite treatment was the turning point for my son. The doctor felt that parasites were a big issues for him, more of an issue even than lyme. Based on ART testing, he doesn't feel that my son's lyme was ever all that bad, and it continues to test lower and lower on each visit. I believe treating the KPU was a big help for my son as well. My son tested very high for KPU both by lab testing and by ART.
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My husband heard this story on public radio today about people with "autobiographical memories."
Interestingly, they also had OCD. So were they born with OCD or did they have infection as a child that led to their autobiograhical memory/OCD?
My son, 17, has an "autobiographical memory," but on a much smaller scale than is mentioned in the article. His good memory is all "auto" (remembers events unusually well about his own life only). For example, when he took biology, he wasn't particularly good at memorizing the biology terms.
He is my only PANDAS/lyme/OCD child out of four. And he is the only one with the "autobiographical" memory." When I asked him about it, he said he felt that this special memory started in about sixth grade. Before that, he only remembers the normal amount that we all do. Interestingly, his first real OCD problems began in sixth grade, though he has had some OCD-like behaviors since kindergarten. At that time, I didn't know anything about PANDAS, lyme or even OCD for that matter, so I don't know what infections he may have had. But for the most part he was very rarely sick. No known strep or even lingering sore throat.
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This is probably an odd question because if our children were better, we wouldn't be on this forum, but I was wondering if there is anyone (or anyone you know of) that has gotten permanent improvement of PANDAS symptoms from a tonsillectomy. I read of one case on the internet, but was wondering if anyone on the forum has had this kind of success. Thanks!
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My son has been treated for PANDAS since October of 2010 and for lyme/parasites/co-infections/viruses since January of 2012. The doctor is considering removing my son's tonsils because he is testing positive for strep again. The doctor feels that a low-lying level of strep may have always been with my son because strep seemed under control until we took him off antibiotics (Biaxin) and put him on the Klinghardt "lyme cocktail". The doctor feels that perhaps strep is hiding in my son's tonsils and may be keeping him from fully recovering. We are to talk about a tonsillectomy on Thursday.
I know many have had their children's tonsils removed and speak positively of it. I was interested in hearing from anyone who may have wished they had not had their child's tonsils removed. Or from someone who has decided against having their child's tonsils removed.
My son's tonsils appear normal. He has never had severe sore throats or any other signs of strep. He was asymptomatic for strep in 2010, though his ASO and Dnase were elevated. For the most part his only symptom has been and is severe OCD. He is about 60% improved over where he was in October of 2010--most improvement coming from lyme/parasite treatment that began in January of 2012.
My son's TGF-B1 was elevated when tested about 9 months ago, and Dr. T told us at that time that this meant chronic infection of some type--usually lyme. But perhaps it is showing chronic strep as well.
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For those who might not have drug coverage, just wanted to mention that there is a good drug store in Canada that is much less expensive than the U.S. For example, 50 days of 100 mg. generic minocycline is $29. It is completely safe, legal, and regulated the same as the U.S. (my doctor is the one who told me about them). The only problem is that you have to wait two or three weeks to get your prescription, though sometimes they can get it to you much faster depending on where they have to go to get the drug.
www.northdrugstore.com
There are other good pharmacies in Canada. This is just one. All have tremendous savings over the U.S. prices.
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For those who might not have drug coverage, just wanted to mention that there is a good drug store in Canada that is much less expensive than the U.S. For example, 50 days of 100 mg. generic minocycline is $29. It is completely safe, legal, and regulated the same as the U.S. (my doctor is the one who told me about them). The only problem is that you have to wait two or three weeks to get your prescription, though sometimes they can get it to you much faster depending on where they have to go to get the drug.
www.northdrugstore.com
There are other good pharmacies in Canada. This is just one. All have tremendous savings over the U.S. prices.
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Have you talked with Dr. S about Omegas?
Yes. My son was on the ProEFA Xtra--4 per day. It is very high in omega 3. Dr. S put him on this, but did not test for it first. I e-mailed him about this and he said to take him off it until our next visit which is next week. I will mention the YES product to him.
I am not sure if my son still has KPU. I will have Dr. S test for this on the next visit too.
My son seems to be doing better without the ProEFA Xtra, but may also be improving because we added Biaxin back in temporarily (for 30 days, then 2 weeks off, then 30 days minocycline) to treat strep.
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I like the higher omega 6 as opposed to omega 3 since my son is pyroluric and therefore should take a high dose of omega 6. But should omega 3 be avoided altogether for a pyroluric child?
http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder
"Due to alterations in the fatty acid pathways, deficiency in arachidonic acid (Omega 6) is most common in pyrolurics. It is important to note that omega 3 EFA's (EPA/DHA) must be avoided, as they compete with omega 6 in enzymatic pathways."
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My daughter was recently diagnosed as having mold in her sinuses. We are looking at replacing all the floors in our main level within the next year, and I was wondering if anyone has any recommendations for the most mold-resistant flooring. The basement floor is concrete and we are planning to leave that floor alone. Thanks!
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Dr. Marc Schwartz, DC in Jenkintown, PA (near Philadelphia) teaches ART classes on the east coast for the Klinghardt Academy. He has trained directly under Dr. Klinghardt.
Also, I think there are different levels of certification (three or four). The higher the better.
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philamom -- "I had it done through Quest- is there a difference?"
I really don't know, but I don't think so based on this site which mentions using either Labcorp or Quest:
http://mthfr.net/mthfr-test-how-to-order-a-mthfr-test/2011/09/17/
I said LabCorp because that is what my script from Dr. T said. But Dr. T only ordered the test by my prompting and at the time (about 1 year ago) he was not too terribly familiar with it. He may have written LabCorp on the script because he knows that is my hospital's preferred lab.
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What is the complete name of the panel that includes this please?
Nancy
It is a Labcorp test called "MTHFR DNA Analysis," (test #511238). Dr. T is familiar with it and will order it for you.
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LLM -- Do you feel that once your daughter has completed lyme treatment she will no longer need the tryptophan and tyrosine? In other words, do you feel your daughter was born with a dopamine and serotonin problem or that it was caused by her lyme?
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We recently started my son on inositol to help with his OCD while we continue to treat lyme and coinfections (strep seems to be under control at this point). He is taking 3 500 mg. tablets 3 times a day for a total of 4500 mg. per day. The doctor said not to be afraid to increase it, if needed.
For those of you whose children are on inositol, how milligrams did it take for you to seen results. Did you continue upping it until reaching bowel tolerance? Did it help? Did your child continue on it?
If you are using the powder form, would you please include how many milligrams are in each tsp. you give your child.
Thank you!
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We have continued on our journey in healing my son of lyme and coinfections using Dr. Klinghardt's protocols. My son has completed parasite, virus, and yeast treatments and continues on the "lyme cocktail" as well as K-Bart, K-Bab and several other supplements (Regulat, olive leaf, b-complex, B-12 shots, homeopathic for adjuvants, CORE for pyroluria). He is definitely improving in the three months we have been treating him and is doing much better with schoolwork, piano (will be playing in a recital soon!), and everyday tasks, but still struggles severely with almost anything he has to accomplish alone. Dr. Schwartz described the lyme as "caged" but not gone, and my son will remain on the lyme mix for some time.
In the meantime, Dr. Schwartz suggested inositol to help with my son's OCD. He said for my son to take 3 500 mg. tablets 3 times a day for a total of 4500 mg per day and to not be afraid to gradually up it if we didn't see results.
I was curious how many miligrams it took for you to see results in your children. My son is 17, 5' 7" and weighs about 120 lbs. Thank you.
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Thank you for sharing. I'm glad he is pushing through his herx. I hope to hear good news soon! How is your son with the taste of the supplements? I'm considering an appt. for my daughter, but know she would have an extremely difficult time with the taste of the supplements. She is very finiky that way...does much better with pills/capsules than liquids (at the moment).
Thank you for your encouragement. Wishing your daughter well too. I know you have been through a lot. My son is older, 17, so the pills don't bother him at all. The "Regulat" he is taking has a bad taste (and smell), so we mix it with apple juice. That is the only one he complains about. Dr. Schwartz's assistant has two young children with PANDAS/lyme. Maybe you could call the office and ask to speak with her. I'm sure she has lots of suggestions for getting the supplements down. Her name is Lisa.
One thing I wanted to mention. Though he schedules first appointments for Wednesdays when he is not busy, any future appointments are on busy days and he is usually running very behind. Fridays are the worst--we waited two hours. He is a very compassionate person and thinks nothing to allow a 15-minute appointment to take 30 or 45 minutes, so you can see how he easily gets very behind. So the trick is to call before you come to see how behind he is running. And it's best, if possible, to make appointments on any day but Friday.
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Is Dr. Schwartz part of ILADS?
I'm not sure of the answer to that, maybe someone else can chime in. But he is a LLMD, if that is what you mean. He understands chronic lyme and chronic infection better than any lyme doctor I've been to yet, and I've been to three others. He is an Klinghardt-trained ART practitioner, so he will use natural things first and medicine second. That said, however, he will not hesitate to prescribe meds for as long as needed. He really is the best of both worlds. The only drawback of course is that natural things are very expensive and not covered by insurance. But since we all have a money tree growing in our backyard, that is no problem.
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How is it going?
My son will finish the Klinghardt 6-week parasite protocol tomorrow. He began to herx during the last two weeks while on Alinia, as Dr. Schwartz expected. No improvements yet, though my son says he is "stronger" with his OCD, meaning though he is "herxing," he is pushing through it better than he would have been able to on a normal bad day (if that makes sense). We have an appointment tomorrow, and I'm hoping my son will start the personalized Klinghardt "lyme cocktail" at that time. Dr. Schwartz is expecting noticeable improvement with the cocktail. But he wanted the parasites treated first. Hopefully I'll have good news to post soon.
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I also have heard good things about Ann Corson.
Ann Corson has a very long waiting list--I think around a year. We are seeing Dr. Marc Schwartz in Jenkinstown, PA (near Philadelphia). He is a lyme doctor that uses A.R.T. testing and Klinghardt protocols. He has about a three-month waiting list.
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Fwiw my son is textbook pandas and his bloodwork is normal including crp
My son's CRP is normal as well. Actually it is very low (0.2 -- reference range: 0.0-4.9). Perhaps this is because inflammation that is exclusively in the brain will not raise the CRP (my son's only symptoms are neurological). I don't know. This is just a guess.
I would run the C3a/C4a, KPU (pyroluria as LLM mentioned), and possibly the TGF-B1 tests. All three tests are inexpensive and though they wouldn't rule out lyme or mold, they would at least point you in a possible lyme/mold direction. My son was ill for over a year before I had the C3a/C4a run. Dr. T was completely shocked when my son's C4a came back very high. If you do decide to run these tests, be sure to read the lyme board to see the right way to have them run. It is very important to run them through the correct labs. I can send you a PM about this if you want.
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At my son's A.R.T. appointment, the doctor asked if my son's MMP-9 was normal before adding a supplement. I can't remember if he was adding CORE or not but that was one of the supplements he added. My son's MMP-9 is normal.
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I don't know much about Hashimoto's, but I did read that it can cause the C4a to be elevated.
What is your child's KPU treatment?
in PANS / PANDAS (Lyme included)
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LLM -- Thank you so much. My son has one copy of the MTHFR C677T mutation and is under-methylated (takes a B12 shot every 3 days for methylation). I will not add the niacin. I think I will add a little magnesium at night though. He does have trouble getting to sleep sometimes. I would rather add magnesium than to add melatonin.
I will split the CORE up between breakfast and dinner too. Good idea!