Christianmom
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Posts posted by Christianmom
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I'm sorry for what you are going through. My son had penicillin by shot several years ago when he was really, really sick. (At the time we thought he had PANS but he really had lyme.) The doctor said it should bring immediate relief, but it did not--it made my son much much worse, and it took him a few weeks to get back where he was before the shot. He also has had glutathione by IV twice and did very poorly with that as well. I don't know why. Maybe he just can't tolerate anything that goes into his system too quickly. But he tolerates oral antibiotics well.
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Thank you everyone, we are very excited for him.
MomWithOCDSon, do you use regular hydrogen peroxide like you get at the drug store?
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Hi Everyone,
My son will soon be attending his high school graduation and his teeth are badly stained (I think from minocycline but not sure which antibiotic has caused it. He recently stopped minocycline.) He just had his teeth cleaned six weeks ago, and the stains always go away after a cleaning. But I really don't want to pay for another cleaning and I would like to get some nice graduation pictures.
Does anyone have any ideas?
Thanks!
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Hi beerae22,
Sorry for what you are going through. When my son was at his worst three years ago, his worst OCD was related to food. In fact, it was the only clue that anything was wrong with him--he is asymptomatic for lyme and strep. His OCD thought was that something bad was in his mouth, so he couldn't put food in his mouth or swallow. He had several variations of this thought. It was the worst OCD we ever had to deal with because the lack of food weakened him making it all the harder for him to deal with his OCD.
I think the wake-up call for us was when our doctor (Dr. T) at the time threatened to hospitalize my son if he didn't put on weight--he gave us two weeks, that's how bad my son was. So we explained this to my son (15 at the time) and told him we would be sitting with him for every bite because we loved him and this was just not a compulsion that we could allow him to continue. So we sat with him constantly. He ate four or five small meals a day. Very, very slowly he gained weight--it took months. Now he is much better than he was then, though still really struggling with OCD. And I always know when his OCD is completely overwhelming him because he starts having eating issues again. Even on a good day, he opens his mouth overly wide when eating. I have asked him if it's because he has OCD when he eats now. He said no, but he opens his mouth overly wide to make sure he doesn't have a bad though come while eating. That's how vivid these OCD thoughts have been in the past for him.
Also, antibiotics helped my son. Not so much because we were on the right antibiotic at the time because I don't think we were, but because antibiotics make my son hungry. Hang in there, food OCD is a tough one!
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My son just started Bryon White A-P for parasites. I was wondering if anyone has any experience with this particular Byron White formula. Has it helped anyone's child? Thanks.
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Sometimes Vancomycen is needed to clear c-diff.
Also, I like Klaire Ther-biotic detox support probiotic a lot. We use ther-biotic detox, florastor, culturelle, and Integrative pearls daily for prevention.
My son is already on Klaire Ther-biotic detox--2/day. He is also on Jarrow sacc--4/day. He had been on 2 Jarrow sacc/day, but his doctor upped the sacc. to 4/day when my son recently went on Clindamycin which is known to cause c. diff. But it is is possible my son has had c. diff for some time, unrelated to the Clindamycin.
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Most gastro doctors won't treat c diff unless you show symptoms of c diff. I am surprised your son got that much flagyl without symptoms. If there is no diarreah I would not worry too much about it. Everyone carries a small amount of c diff in their intestines, it only becomes a problem if all the other good bacteria is killed off by antibiotics without probiotics. This allows the c diff to take over and cause problems. Most labs refuse to test solid stool. So as long as your son is not showing symptoms don't worry too much, just be sure to give probiotics daily.
The c. diff was found through the Organix Acid Comprehensive Metametrix test (dysbiosis section). It is a urine test that tests for bi-products of c. diff. My son's number was pretty high--several times the normal limit. So I am pretty sure he has a c. diff problem. He was also recently on clindamycin which is known to cause c. diff.
My son's LLMD had no problem ordering the medicine, though she was not sure it was causing his OCD (though that is what most doctor's say--I am use to that response).
My son's only symptom of infection is severe OCD. He has really never had any significant stomach or bowel issues throughout his three-year treatment.
Actually, the test came back positive for "clostridia species." So not necessarily specifically c. diff, but something in the family.
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It's been a while but I think we re-tested with Metametrix after two or three months.
That's what I thought. The doctor suggested 4 weeks a Flagyl and then test two weeks after that. That doesn't seem like long enough. How did you treat the c. diff? Did the re-test come back negative?
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My son has been on Flagyl for almost a month now (500 mg. 3/day) for c. diff. He has no normal symptoms of c. diff, only severe OCD. The c. diff was found through the Metametrix Organix Acid Comprehensive test (specifically through the Organix Dysbiosis Profile). It is a urine test.
For those of you whose children have had c. diff, how long did you wait before re-testing. My fear is that if we test too soon, it will come back positive even though the infection is gone. Thanks!
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I will tell you that our LLMD/DAN doc told me that all of his mold patients test over 10,000 on the C4A. His Lyme-only patients may be high, but are always under 10,000.
Thank you for your reply. Did your C4a come down with mold treatment? As I mentioned, my son's is now normal. I am going to mention this at my next appointment and see if possibly for now we should not do this test. I'm not sure the doctor realized my son's c4a is now normal.
The test is $699 and hits the out-of-network deductible, so basically we would pay it all ourselves. The test, however, does seem to be a very good one from what I've read on the internet . Maybe it is more conclusive than the Shoemaker panel. If it wasn't so expensive, I would have it run, especially since it is only a urine test.
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My son's doctor recently ordered this test which is very expensive. I was wondering if it is necessary since my son had the Shoemaker mold panel run two years ago. He also recently had the C3a and C4a rerun and both came back in the normal range.
Here are my son's results from his Shoemaker panel run two years ago:
1. C4a -- Jewish Health 8371 (reference range: 0-2830)
2. C3a -- Jewish Health 240 (reference range: 0-940)
3. HLA DR -- Gene 1: (07, 02, -, 53, -) "mold susceptible"
Gene 2: (08, 04, - , - , -) "no recognized significance"
4. MMP-9 219 (reference range: <984)
5. ACTH 80.1 (reference range: 7.2-63.3)
6. MSH 62 (reference range: 0-40)
7. Cortisol, AM 25.7 (reference range: 3.0-22.0)
8. DHEA Sulfate 201 (reference range: 38-340)
8. VIP 56.2 (reference range: 0-58.8)
9. VEGF 55 (reference range: 31-86)
10. CRP 0.2 (reference range: 0.0-4.9)
11. Celiac workup negative
12. Anti-cardiolip. antibody negative
13. MTHFR single mutation, C677T
14. VCS normal (done on-line)
15. TGF-B1 3300 (reference range: 344-2382)
Thanks!
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My son's doctor recently ran the Metametrix Organix Comprehensive Profile test. For the most part, everything can back in the normal range, but one marker came up pretty high--DHPPA.
I have been trying to understand what this means. Great Plains Laboratory has a similar test that distinquishs between DHPPA and HPHPA. From my understanding, Great Plains is saying that the DHPPA marker is just a marker of good bacteria and that HPHPA is the important marker for clostridial. But Metametrix only tests for the DHPPA marker and lists it as a test for the clostridial species.
The reason for my question is that my son is on very high probiotics: Klaire labs therbiotic detox support--2/day (50 billion/tablet) and Jarrow Saccharomyces Boulardii + MOS 4/day (5 billion/tablet). So I wanted to make sure this test is showing true clostridial and not just an overuse of probiotics.
My son's result for DHPPA was 0.70 (normal is <0.05). Does anyone have any thoughts? Thank you!
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We are for sure having the test done, so I will post the results when I have them.No we haven't done the test, but please keep us updated if you decide to have it done.
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Dr. H just ordered this test for my son, mentioning that it might find a detox problem. I was wondering if anyone else's child has done this urine test and if the results were helpful. Thanks!
http://www.metametrix.com/test-menu/profiles/organic-acids/organix-comprehensive
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Agree with Rowingmom. You can tolerate some sulfur abx and still have a CBS problem with glutathione. My DD was on bactrim for 8 months and was ok. But she can't handle glutathione precursors like NAC or ALA (never did IV push). With CBS mutations, it can be a matter of degree. Like a bucket that can hold 12 ounces but try adding 14 ounces and it'll spill over. Have you tested for CBS?
That makes sense. Have not tested for CBS. What is CBS?
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My son was given a glutathione IV-push at his last visit with the LLMD on Friday. He started doing poorly just a few hours afterwards and is just tonight coming out of it. I was wondering if anyone else's child has had a negative reaction to IV glutathione. It is not a sulpha allergy because my son does fine on Septra and Bactrim (two sulpha antbiotics). I would appreciate anyone's thoughts.
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You're welcome. Hope it helps!Thanks.
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My son has been on parasite treatment twice in the past. Both times he was at his worst and the parasite treatment pulled him out of the worst. But it did not get him anywhere near to complete recovery. Maybe took him from 0% function to 30%. This time my son is at about 60%-65%. (Though really it is hard to give a % to his progress. Some OCD is much, much better even almost gone, while other OCD is still horrific.) Hopefully the parasite protocol will bring some improvement, especially if the protocol is done 4 times. But maybe not since he has already been treated for parasites twice. We will see.Did you see much improvement after the first round?
My son has been sick for 3 years and has had a lot of treatments for strep, mycoplasma pneumonia, lyme, bartonella, babesia, KPU, viruses, etc. Parasite treatment is only part of the picture.
Maybe others will chime in with their experiences.
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How do you know if parasites are present? Are these intestinal?
Well, I'm not sure I'm the best one to answer this, but I believe the thought is that if a person has lyme, they also may have a problem with parasites. Though everyone has parasites to some extent, people with compromised immune systems because of lyme, etc. tend to have bigger problems with parasites because their compromised immune system keeps them from being able to rid themselves of parasites naturally. The parasites this protocol is treating would include all parasites (intestinal, hookworm, tapeworm, etc.) except babesia which is treated differently.
The doctor is pursuing this protocol because my son has shown some improvement on previous parasite treatments.
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I would be interested in what Dr H has suggested for your son.
My son was put on a variation of this protocol:
http://www.michaelharrah.us/parasite-protocol/protocol/168-dr-klinghardt-parasite-protocol
My son has been on this protocol before, but only once. The doctor ordered 3 refills on the meds, suggesting that he wants to repeat the protocol for a total of four times, as is suggested at the the end of the link here. I was just wondering if anyone else had tried such a lengthy parasite protocol and what the results were.
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To anyone whose child is being seen by Dr. H in NY for lyme:
I would like to compare notes on the parasite protocol Dr. H just ordered for my son and your child's protocol. Would you please PM me? Thanks!
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Try putting "URGENT, NEED REFILL" in the heading of the e-mail so that Dr. T knows it is important and needs to be read immediately. This worked for me when my son was his patient.
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philamom -- Thank you! I'll look into those websites.
Hopeny -- Thank you! I have the book "Cure Unknown." I'll look it up. My son has already been on arteminisin for a year. I don't think that is an answer for him.
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I live in PA and my son's LLMD is Dr. H in New York.
Psychiatrist
in PANS / PANDAS (Lyme included)
Posted
I don't post very often anymore, but my thoughts and prayers are with all of you. We have been down that long road of recovery with our son, and we know what you are going through. God has graciously given us our son back.
My son is a lyme patient of Dr. H and he will be weaned off antibiotics starting next month. He is doing very, very well--living a normal life, working, going to college.
As part of his treatment, Dr. H has my son on anafranil. It has been very helpful because my son was sick for so long that much of his OCD is ingrained. My son says the anafranil does nothing to take away the OCD, but it does help him calm down which makes him able to stop his OCD before doing compulsions. And less compulsions has led to less and less OCD. Basically his OCD is not noticeable except by family members.
The plan is to wean my son off antibiotics slowly over several months, while keeping him on the anafranil. Once he has remained stable for a year, the plan is to wean him off the anafranil, very, very slowly.
Anyway, at my last visit with Dr. H, I was told that he will no longer prescribe any psychotropic drugs and that I will have to find a psychiatrist to prescribe the anafranil.
I have some questions for anyone who is using a psychiatrist.
First, it is very important that my son stay on anafrail and not be switched to another drug because he has done very poorly on every other psychotrophic drug he has tried. I am afraid the doctor may not want to keep my son on anafranil because it is considered a "dirty drug." Experimenting with another drug could (and probably will) be a big set back for him.
Second, I was curious it someone could tell me the cost and could tell me how often my son should expect to make appointments in order for the psychiatrist to refill the anafranil.
Third, will I have problems getting the doctor to see the lyme connection to my son's OCD? What can I expect with that? I have only been to one psychiatrist throughout my son's illess--a reputable doctor at a big-name hospital, I found that person to be unsympathetic to the infection element of my son's illness and frankly very intrusive into his personal life. Though he is much better and older now than then, the experience was traumatic for him. The personal questions were endless. He left feeling very much like a child with a permanent mental illness instead of a child recovering from infection.
I would appreciate anyone's advice. Thank you!