Christianmom
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Also, alternatively, you might want to try peanuts/peanutbutter. It's full of tryptophan (like 5-HTP) and also fat, which, my theory is takes it straight to the brain.
This is interesting because my son eats peanut butter on crackers every morning for breakfast because he says it makes him feel better. He doesn't really like breakfast in general (a symptom of KPU), so he tends to eat the same thing every morning. He says the reason it helps him is because of the protein--he is hypoglycemic. In general he doesn't do well if he is hungry at all. And the vitamin/herb mixes that he is on seem to make him extra hungry. So he eats often.
I wonder if the link to peanut butter is the protein itself and not the tryptophan. My son actually tested high for tryptophan, so I don't think it is the need for tryptophan that is helping him.
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one series of labs I found helpful was Shoemaker's list of bloodwork to check inflammation markers. http://www.survivingmold.com/diagnosis/lab-tests
It was the "Shoemaker mold panel" that LLM is suggesting here (especially the TGF-B1 and c3a/c4a) that pointed us in the direction of lyme. Interestingly, my son does not have mold illness. We also found that my son had parasites through the Metametrix complete stool profile (covered as an out-of-network lab) and my son tested very high for KPU (another clue that had us start looking at lyme). I would also run a CD-57 test as further testing for lyme. My son tested negative in both CDC and Igenex lyme/co-infection testing though he has lyme, bartonella, and babesia.
Dr. T ordered these tests for me, though, unfortunately, he was not familiar with them (at the time anyway), so I had to bring the list of tests to him which required some work on my part. He did say he thought Dr. Shoemaker was a genius and was very supportive of the testing. The tests need to be run at certain labs (Labcorp, Quest, Jewish Health), so be sure they are sent to the right lab. Also, be sure the tests are run correctly. The C3a/c4a and TGF-B1 have special instructions. Insurance should pay for everything except the C3a/c4a (must be run through Jewish Health; I think about $100), and the KPU (mine was done through Vitamin Diagnostics, about $60).
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How does one go about getting the Metametrix Stool Analysis done? Is this a test your LLMD ordered? Thanks
Dr. T has Metametrix kits and can send you one with a script. That's how I got mine. For me, it was covered by insurance, but it hits the out-of-network deductible. We had met our out-network-deductible for the year, but insurance still only paid half (the amount they thought the test was worth).
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Here is the link to the Metatrix interpretation of the test from their website (if you haven't already seen this):
http://www.metametrix.com/files/test-menu/interpretive-guides/GI-Effects-IG.pdf
When my son had the test run about a year ago, it came back positive for "parasite present, taxonomy unknown" as well. He also tested positive for the "hookworm" parasite. Some think the "taxonomy unknown" is picking up babesia. In my son's case this was true. Treatment for the hookworm parasite (6 weeks) was the first step in the right direction for him. He is still being treated for babesia (babesia is treated differently than other parasites).
Even if the "taxonomy unknown" parasite isn't babesia, it is some parasite, and can be treated. Sorry if I'm telling you what you already know
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Maybe you could consider a less expensive brand? Or, if he doesn't seem to have any GI issues, you could decrease them or even remove them entirely? Maybe try going to once a day and see if there are any impacts, then once every other day, etc.?
Thanks, I'll take your advice. My son doesn't have any GI issues and really never has.
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Now, off abx, he continues to take about 60 billion units daily: a 50 bu mixed organism probiotic by Renew Life, and a 10 bu sach b. This level seems to be a good one for him "post abx."
Hi!
I was wondering how long your son will stay on probiotics now that he is off antibiotics? My son is taking Ther-Biotic Detoxification Support by Klaire Labs--2/day. It is costly and, for the most part, my son has been off antibiotics since March. I would love to take the probiotic out of the mix! He also takes 20 chlorella/day.
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If you do choose to do IVIG, there are much cheaper ways than through Dr. K's office, if you have to pay out-of-pocket. Going directly to a lab like Coram will save you a lot of money.
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My son tested positive for KPU (pyroluria) through Vitamin Diagnostics. His results were 30.5 (reference range: <15.0). This number was probably low because I only used his first morning urine. It was one of the clues that eventually took us down the lyme path with him.
He is taking 4 CORE/day (by Biopure) and Borage oil (Pure Encapsulations, 1,000 mg. (1 pill/day)). He also takes 2 basic b-complex tablets per day as well as a host of other supplements for under-methylation, lyme, bartonella, babesia, strep, and detox. He is not currently on any antibiotics).
We began treating KPU at the same time we began lyme treatment. The first step of lyme treatment was to treat parasites. We definitely saw noticeable improvement after treating parasites, but I'm sure the improvement was also due to treating the KPU (doctor calls it "HPU").
I would agree that it is important to find a doctor to help you with KPU treatment and not to venture off by yourself. Every child is different. The trick is finding a doctor who really understands how to treat KPU. It will probably be a natural doctor of some time. Any good lyme doctor could help you. I would caution you about going to a pediatrician for a couple of reason. One is that they may tell you there is no such thing as pyroluria (it is not a popular diagnosis in the medical community), and two, you don't want your child to be the first pyroluria patient they treat. You need a doctor with experience in treating it.
In our case, we were already seeing a naturopath, and I asked him to treat my son. I showed him all the information from Dr. Klinghardt's site and his protocol. Unfortunately, we wasted a lot of time with this naturopath because though he meant well, he had never treated pyroluria. So my son's pyroluria wasn't really addressed until we found a good lyme doctor.
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My son tried fresh camel's milk recently for three weeks, 8 oz. per day. Though he liked the milk and thought it may have made him feel a little better, it did not seem to help his OCD or anxiety at all. But my son has lyme, so possibly that is why we didn't see the improvement that others have seen.
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After the experience we had at CHOP, I also warn people to stay away from them, as well...denied PANDAS, told us it was "voodoo", and then dx my son who had severe neurological flareup with conversion disorder (after already dx by 5 other docs with PANDAS and/or lyme and/or post-infectious encephalitis. I would warn parents to stay away from CHOP, as well, because I wouldn't put it past them to pull something similar.
When I read this post about BCH, I had the same thought as you about CHOP. Our doctor was adamant that my son's problems were completely mental and in no way related to illness. She made me very feel very uncomfortable and guilty, as if I were a bad parent for not pursuing mental help for my son sooner. She said several times that I needed to get my son on a drug like Prozac as soon as possible. When I disagreed with her, she shut me down, wouldn't even listen. So I didn't continue fighting for fear of what she would do if she felt I wasn't going to do what she said. I just tried to get out of there as quickly as I could.
These children's hospitals seem to think they are the last-word authority. I had been sent there by Dr. T for plasmapheresis and she completely ignored his PANDAS diagnosis. Wouldn't even consider it as a possibility. Wouldn't even look at the bloodwork. Based her diagnosis completely on the fact that my son told her he had had OCDish behavior for years. When she heard that, she ruled out PANDAS because there was no "sudden-onset OCD," and that was that.
I was also uncomfortable with the amount of documentation that she required. She asked a lot of unnecessary questions. I just couldn't understand why she asked all the questions she did. It seemed well beyond what was necessary.
I fear these hospitals as well because of the links they have to pharmaceutical companies that sell psychotropic drugs like Prozac.For the name of the doctor please IM me.
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DD had spelling problems as well--though I think this was due more to whole language reading instruction. Luckily she did learn to read and is an avid reader. I worked with her for a while on spelling with AVKO, which is used by many homeschoolers. Her spelling did get better though she quit early. This is a low investment program from a time point of view, and it's cheap as well. Basically, you give a spelling test every day--the words are chosen based on pattern and the point is to imprint the patterns. The first lesson, for example, begins: in, skin, napkin, grin... Given the order the words are given in, the student has a high chance for getting the spelling right each time.
I used the adult version ($13)--you are supposed to be able to get through it in a year and I wanted her to get through the basic word patterns on a supplemental basis but homeschoolers would probably go for the children's version as it would be a part of their curriculum. Here is the link:
I have heard good things about this program as well. You may prefer it over Spelling Power. I have been homeschooling for a long time and am basically too cheap to buy new curriculum unless I absolutely have to. All extra money goes towards PANDAS/lyme treatment for my son and helping our older college kids.
I have used Spelling Power for 14 years and have the original version without games. I just give a spelling pre-test on Monday, they practice 5-10 minutes per day, and I give a test on Friday. Old-fashioned, but it has worked for us.
The program mentioned here is much more popular than Spelling Power and will probably be more fun to use. I think the key is to stay with it as long as necessary. I originally picked the Spelling Power program because it taught spelling through high school (eleventh grade) and no other program was doing that.
One thing I do. If they get the pre-test completely correct or only miss one word, they get the week off. Rarely happens at the high school level, but it does give them something to shoot for.
Another thing that has helped my chidren is for them to try to put into syllables any word they are having trouble spelling. It forces them to think through each sound they hear. You may have to teach them how to put words into syllables first though. (Basically, every time a vowel sound changes, it is a new syllable.)
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So here is my question- what would you do? I am planning to wait it out a couple of months, and as long as it looks like dd can maintain a B in her class (even with marking off for spelling) I will stay out of it. However, if things are looking worse than that- I really think she should be allowed to use a dictionary in class (maybe she is and just doesn't know?).
Thanks!!
I think this is a good plan. When my oldest (who is now in college and a fine speller) was struggling with spelling in elementary school, I went to a friend with a doctorate degree in Education for help. (My daughter is also gifted academically like yours.) He told me not to worry about it, that spelling is not a sign of intelligence or academic abilities. (He was right.) He said his mother used to tease him that he was the only person she knew that could spell the same word wrongly two different ways in the same paragraph.
He is a brilliant man with merit scholarship-winning children. He went on to play a big part in writing the Pennsylvania home-school law. Apparently his spelling skills didn't hold him back.So I guess my point is to try not to worry about it. Even if it doesn't resolve, your daughter will do fine. Just hope you can get this teacher to see that.
In terms of suggestions for helping her to spell better, with my children that have struggled (three out of four, though all spell well now), it has helped to give them weekly spelling lists into high school (instead of stopping in elementary or middle school). I use a program called Spelling Power because it has a lot of review in it. There is something about continuing the study of spelling into the maturer years of high school that seems to solidify things for them. Also, the more a child reads, generally the better they are at spelling. So you may want to encourage her to read more. Doesn't have to be hard reading, just reading. A poor speller has a problem visualizing how a word is spelled. So the more they see correct spelling in print the better. Also, encouraging your daughter to e-mail will help her spelling.
So glad your children are doing so well otherwise!
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Thank you all for your replies. I am going to talk to the doctor about reducing my son to the 1 mg. 5-mthfr since he only has one C677T mutation.
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My son is taking methyl B-12 shots (.09 ml every 3 days) for methylation and 5-MTHFR 5 mg. (by Thorne) for 5-MTHFR mutation. He has one C877T mutation. At his last appointment I questioned it he needed to be on the 5 mg. dosage of 5-MTHFR (instead of the 1 mg. dosage) and the doctor's assist said he needed to be on the higher dosage. But I read of one person on the internet who became very anxious on even the 1 mg. dosage. I was wondering what dosage 5-MTHFR your children are on, what brand, and if you are taking methyl B12 shots with it. If taking methyl B12 shots, what dosage? Thanks!
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Yes, Dr. T will charge for a phone consult, the same amount as if you were in his office. He charges in 15 min. increments so if you go that route, you'll want to be organized before you call and will want to keep your conversation as short as possible (he will NOT be organized
). Also, he will require a new patient consult first (I would think) which I believe is about $400. I would think he would talk with your pediatrician for free (or at least reply to an e-mail). He is very kind in that way. Make sure in the heading that it states clearly that the e-mail is coming from a doctor's office so he doesn't disregard it. He gets an ENORMOUS amount of e-mails as you can imagine, so you don't want to get lost in the shuffle.
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Since my son's ONLY symptom has and continues to be severe OCD, the most improvement I see is in him doing fewer and fewer compulsions. Less compulsions has of course led to much of his OCD either going away or becoming much more mild.
Things that he can do now that he couldn't before treating lyme in January of 2012:
1. Playing the piano normally. (Couldn't touch the piano when at his worst.) Played a difficult piece for a recital recently.
2. Touching water normally for the most part (water was a big OCD trigger before).
3. Showering normally (no more 45 min. showers).
4. Able to do simple tasks pretty flawlessly. Interesting, it was the little tasks that would set his OCD off the most in the beginning. Now, he thinks nothing to wash dishes, vacuum, clean something, etc.
5. Able to write normally. At his worst, he was unable to write because of severe OCD. Even signing his name was a chore.
6. Able to do DIFFICULT math fairly normally, though still working on this.
7. ABLE TO PASS HIS LEARNER'S PERMIT!!! Had no interest in even trying before.
8. Able to ride roller coasters again. This was a big, big step for him because he has always had somewhat of a fear of heights. He hadn't even been on a roller coaster since being ill--didn't even want to try before.
9. Sleeping normally. At his worst he would toss and turn for hours with severe OCD.
Still struggles, however, with any difficult task (like school) that he has to do alone. He can accomplish difficult tasks fairly easily if I am sitting with him, but his OCD is set off when I leave. I am slowly having him do more and more schoolwork without me.
He still has MANY compulsions, though he is working through them everyday. He is able to "let his OCD go" much more now. Before lyme treatment he had no control over his OCD at all. It was "24/7" as he described it to us.
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My son is in the middle of PANS exacurbation and his dr. Muscle tested him and seemed surprised that lyme tested neg. So, while lyme was part of healing, it it is hopefully deactivated and possible one of many things that caused the PANS not the only thing. At one time I was hopeful that getting rid of lyme would get rid of PANS but dr. Said son will probably always have PANS.
With my son, since his symptoms are ONLY severe OCD, it seems that for whatever reason when he gets an infection (parasites, lyme, strep, EBV, yeast) his blood brain barrier opens and he gets inflammation in his basal ganglia and therefore gets severe OCD. So we are continuing to fight all infection until he is completely better. But what does that mean for his future? Will he continue to get OCD with any major infection? Is OCD his body's way of telling him he is sick? (He is asymptomatic for strep, has no "typical" lyme, parasite, yeast, or EBV symptoms and has no immune deficiencies.)
It is scary to think about, but it may very well be his future. Hard to explain to other people, but while some get headaches, runny noses, etc. when sick, my son gets OCD. In terms of physical symptoms, my son would be the "never been sick a day in his life" type, though he is and has been very, very sick.
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So sorry you are going through this. We were at a similar crossroad with our son in Nov. of 2011. PEX was recommended by Dr. T and denied by Dr. Elia (CHOP). Don't think it would have gone through insurance anyway. So we were looking at IVIG as the only possible solution, expecting to pay a lot for it because it is my weight.
Instead we did LOTS of additional testing (most of which insurance covered) and lyme was discovered. We decided to go as natural as possible with lyme treatment, especially since my son had already been on antibiotics for a year and a half at that time. We are using Dr. Klinghardt protocols for lyme, parasites, yeast, KPU, EBV, bartonella, and babesia. My son is much improved though still has a long ways to go.
When we were at CHOP trying to get PEX (back in Nov. of 2011), Dr. Elia diagnosed my son with extremely severe OCD. (At least this one point we did agree on.) He was functioning at about 30%. We had to help him walk into her office. Today he is at about 65%-70% and improving.
I said all this to say, if PEX or IVIG don't work out for your child, don't give up. There are other things out there. My biggest disappointment over not getting the PEX for my son was that I felt it would have at least given him some temporary relief. I wasn't sure it would have brought permanent relief. But it seemed heartless to not give him relief when it was available, even if it was temporary. But with that said, the PEX denial made me search all the harder for other options. And lyme was discovered sooner than it would have been because he didn't have PEX. I believe that God worked it all out for the ultimate good of my son.
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Just changed mine.
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Christianmom - re: the EBV - google l-lysine for EBV - worked like a charm for my DD's EBV this past winter after nothing else touched it. Also check out the selenium link I listed on the lyme forum.
Thank you LLM, I'll check out l-lysine and read the selenium link. The doctor prescribed this for my son's EBV and CMV:
Monolaurin by Ecological Forumula (4 capsules/day)
Total VR-x by Nutri-West (4 capsules/day)
Goldenseal by Standard Process (6 capsules/day for two weeks only, then stop)
My son's been on this protocol for a month, so I'll see how he tests for EBV/CMV at his next visit. He has been improving, but I think it's from the 30 days of minocycline that the doctor also put my son on.
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What is throwing me off though is that ds tested positive on 3 Lyme bands on the Western Blot(P23, P41, and P58). Dr. T. is not concerned about this but I am worried.
My son, 17, was originally a patient of Dr. T beginning in October of 2010. I will forever be indebted to him for treating my son so compassionately during the most difficult time in his life. He showed great, great compassionate and was wonderful in treating strep. He was able to quickly get rid of the "worst of the worst" of my son's illness. He listened to me cry more than once. He fought to get PEX for my son from Dr. Elia at CHOP (though it was in vain). However, he was not able to get my son anywhere near better. He got my son maybe 30% better.
With all due respect to him and the genius that he is, he is not qualified to be making a call on your child concerning lyme. It is not his expertise.
My son originally had bands P23, P66, and P41 on his western blot. Dr. T was not concerned. He treated my son aggressively for strep. In the end, my son had lyme. Dr. T was wrong in his original diagnosis and eventually admitted so. His exact words were, "I can't believe it, but your son has lyme."
Additionally my son had parasites (hookworm) which were only found through a Metametrix stool test that I asked for (he did not suggest it, but did order it willingly). Dr. T treated the parasites for three days--did little good. In the end, my son saw another doctor who treated with antibiotics for six weeks to completely eradicate the parasites. Slowly my son started improving.
My son also tested positive for KPU. Again, I asked for the testing, not Dr. T. He said he was willing to treat this if I couldn't find anyone else, but said he had never treated anyone for it before. He said it could better be treated by a naturopath. (A lyme doctor would be very familiar with KPU (if he's not, I'd pick another one) and would have seen a lot of it.) I eventually went to another doctor for treatment. My son started improving more.
Now my son is being treated for EBV and CMV as well as re-occurring strep. He is at about 60-70%.
Please keep pursuing lyme (as well as parasites, KPU, viruses) with a lyme doctor. You can still keep Dr. T as a doctor. He will in no way be offended. He is one of the most humble people I have ever known. And he will order any tests you ask for. That alone made him an invaluable doctor to me.
Please also know that my son shows NO lyme symptoms, and I have never seen a tick on him. He is also asymptomatic for strep. His only symptoms are and have been SEVERE OCD.
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I then wrote a religious exemption- which the schools are instructed NOT to question- and I never heard a peep.
I was really angry at the time, that I was forced into a situation to be dishonest- but, I have gotten over it, and will do the same again, and again.
With my school district I actually told the nurse that I did not have a religious reason for the exemption, meaning that it did not go against my beliefs to give the vaccine. But I told her I did have a moral problem with it in that I personally thought it to be wrong for my child(ren) to have the vaccine. She told me this was enough for a "religious exemption" because the exception is vague. I am not surprised that they are told not to question a "religious exemption."
I would feel no guilt if I were you. You were not dishonest as far as I can see.
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Your post broke my heart to read. I don't have any advice, but you are in my thoughts and prayers.
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SF Mom -- I'm not sure why, but ART doctor feels my son's KPU has been there since birth. He feels my son will be under KPU treatment for life though it is now testing as being under control. So I guess that means the doctor feels my son would regress if taken off the CORE. It's fine with me to leave him on it. Don't want to rock the boat.
Yes, my son is slowly improving. I will forever be grateful for all your help.
Melatonin/B-12 shots
in PANS / PANDAS (Lyme included)
Posted
Recently I began taking melatonin (2 mg.) and have experienced very restful sleep. I was wondering if it might be a help to my son. He goes to bed fairly easily and sleeps all night, but often wakes up in the morning anxious, saying he didn't go into a "hard" sleep. This anxious mood then affects his whole day. He is also somewhat hypoglycemic which I have read may mean his body has trouble making melatonin.
I was wondering if it is OK to give him melatonin since he is already on B-12 shots every 3 days. I had read that B12 shots already increase melatonin, so I didn't want to do too much.
Not sure if it matters, but here is everything he is on:
1. Rechts Regulat (for biofilms)
2. Enula (for microbial defense)
3. Pinella(for brain-nerve cleanse)
4. Nr. 4 Cerebretik (for brain function)
5. K. Bart./K. Bab./K. Merc/K. Harmony mix (for bartonella, babesia, mercury)
6. For KPU: Core, Borage Oil
7. Basic B-complex capsules
8. 5-MTHF (for methylation) -- 1 mg.
9. OLE, monolaurin, and total vr-x (for viruses)
10. Probiotic
11. B-12 shots -- 0.09 ml. methycobalamin every 3 days (for methylation)
12. Chlorella -- 20/day (for detox.)
13. Magnesium
14. Klinghardt lyme "cocktail" (for lyme, bartonella, babesia)
Thanks!