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Everything posted by Christianmom

  1. My son's doctor recently started my son on a DMPS/glutathione/phosphatidylcholine IV-push to help him eliminate heavy metals from lyme biotoxins. His doctor wants the IV-push to be done once a month. He said it would help my son heal much faster. He suggested the treatment because my son had started to regress some for the first time since being treated a year ago. So far, it appears that the IV-push is helping my son out of the regression. He has done very well today. I was curious if there is anyone that has experience with the DMPS-IV push. Some things I have read about it are frightening, and I'm not happy that it is a drug, but so far it seems to be helping. Has anyone seen good results with this type of IV-push? Thanks!
  2. Thank you for your response. I have tried that and he eats as much as he can, but he just isn't very hungry until lunch. But trying to get him to snack does seem to help some.
  3. Thank you, SF Mom. I read some on the subject, and it looks like zinc is a factor. I just e-mailed my son's doctor a couple of days ago about upping my son's CORE (zinc and B-6). He is on 4/day, but his KPU number was pretty high. And I know low zinc causes OCD, my son's main symptom. The doctor said to hold off on upping the CORE until he could ART test him to see if he needs more (I would suppose he is worried about my son's copper getting too low if more zinc is added). Wish I had thought to ask the question while we were in the office last week!
  4. My son is doing very well for the most part. Doctor recently said my son's lyme is reduced to about 40%, and he not testing for any active viruses. Though overall my son is doing well, we seem to have setbacks in the morning. This past week has been especially bad. Basically, he just has trouble getting going in the morning and this sets off his OCD which hinders him from completely his school work in a timely manner--though he is able to complete it which is a big improvement for him. He is not a big breakfast eater, though he does eat breakfast because he knows he has too. But he doesn't eat much because he doesn't feel good if he does (I understand this because I am the same way). Anyway, after lunch he always improves. I'm not sure exactly why he improves. He eats a large lunch, but usually he also takes his "lyme cocktail" at that time. I know that is partly why he improves, but I don't think it is all of it. Unfortunately, by the afternoon he's frustrated because he has so much school left because he struggled in the morning. I was wondering if possibly his problem is low cholesterol (150). He probably also has low blood pressure. Also, I thought I read a post from JuliaFaith that I thought said something about chlorella lowering cholesterol. He is on a low dose of chlorella now (15 per day). He doesn't do well when I up it any higher. Perhaps the chlorella is the whole problem. Perhaps it's because I upped his glutathione from 1 100 mg. tablet to 2. But he was having trouble before I upped it (actually that's why I upped it). He is also somewhat hypoglycemic. But should his blood sugar level have that much of an impact on him? And what can I do about it if he can't eat any more for breakfast than he's already eating? Does anyone have any suggestions? Here's what he's on: Methyl B-12 shots every 3 days, 0.9 mg. CORE 4/day Borage oil (2 per day) chlorella 15/day glutathione -- 200 mg/day (just upped from 100 mg/day) mimosa 1/2 t/day (started this about 6 weeks ago for parasite maintenance) hydrozyme 3/day 5-mthf -- 1 mg. 1/day magnesium -- 100 mg. 4/day pinella -- 6 drops/day basic b-coomplex -- 2/day K. bab, K. bart, K. harmony, K. merc. mixture made up in the office viressence -- 1 dropper full/day for virus maintenance (he is not testing for any active viruses by ART or bloodwork) "lyme cocktail" (in place of antibiotics)
  5. Interesting that you should say that because that crossed my mind recently as well. My son went off the chlorella for a few days and initially did well but then started having more trouble with OCD again. My son suggested going back on the chlorella at the lower dose of 20 that he had been on (instead of 45), so we are slowly increasing him to that. I know he needs the detox because he is also on Lipo-health (Biopure, 1/2 scoop/day) for detox. as part of his "lyme cocktail" and he always does poorly on days he is not on the cocktail. So I have started just giving him the Lipo-health on the days he is not on the cocktail. I will ask the doctor about the chlorella at our appointment tomorrow. Thank you! It is also possible as JuliaFaith said that he isn't doing well on the type of chlorella we are using. It is called Chlorella Fella. It is chlorella pyrenoidosa and is suppose to be of high quality, but I have not had my son ART tested for it. My son's doctor really likes Biopure supplements and he suggests the Biopure pyrenoidosa, but it is very, very expensive. I am a little uncomfortable asking him to test another brand. But I have four in my family on chlorella and we just can't afford anything more expensive than the Chlorella Fella. My other three family members that are on the Chlorella Fella are doing well with it. One of my children that has mold illness (no lyme) is on 45/day with no problems. She is actually doing very, very well with the chlorella plus GAIA.
  6. LLM -- Thank you for your helpful response! I will talk to my son's doctor about the chlorella at the next appointment. For now, you is doing better without it.
  7. Not to steal this thread, but my son doesn't do well on melatonin either. I give him magnesium to help him sleep and to calm him. The doctor actually suggested epsom salt foot baths for magesium, but my son feels they are a bother. It is noticeable if he forgets to take his magnesium because he doesn't wake up as rested. He doesn't have OCD related specifically to sleep anymore, but he does still have trouble calming himself down at bedtime.
  8. My son's doctor recently put my son on the Bio D-mulsion Forte (2 drops per day/every day) because of a low vitamin D number on 25-hydroxy Vitamin D test. He also put my husband and two daughters on it for the same reason (all had vitamin D numbers in the 20's). I didn't purchase any yet because I already had D-3 tablets in the house, so they are just using that up. My husband and daughters are doing fine on it--no better or worse, but it made my son very anxious, so we stopped it for him until I can talk to the doctor. The interesting thing about my son is that a year ago when he was doing very poorly, he was also on the D-3 tablets. I didn't notice that they made him any better or worse because his OCD was so terribly out of control at the time. But his 25-hydroxy test went from 25 to 75. He is now doing very well, yet his 24-hydroxy is back in the 20's. Thank you for the information about the Readisorb 12. I am going to ask my son's doctor about it. It would be much cheaper and would keep my son from having to take B-12 shots every three days.
  9. My son has been on chlorella, 20/day for about 5 months. Recently the doctor upped the number of tablets to 45/day. My son has complained for several months of odd stomach pain that comes and goes. But when we upped the chlorella to 45/day he complained more of stomach pain and said he feels constipated. His OCD also worsened with the increase, which is what usually happens when he doesn't feel well. Today he was off the chlorella completely and feels much better and his OCD is much improved. He feels the chlorella in general isn't good for him, even at the lower dose of 20/day. I could understand if it gave him have diarrhea, but why would it constipate him?
  10. I spoke with my son's doctor's assistant yesterday about glutathoine and mentioned that it is helping my son's OCD in a significant way, even though his KPU and methylation are being treated so theoretically he should be making enough glutathione. She said that you can correct everything--infection, KPU, methylation, etc.--and still have low glutathione because of a missing gene at birth (GSTM1?). She herself is missing this gene and gets IV-glutathione regularly. If she is talking about the GSTM1 gene as I suspect, it can be tested through this link for about $500: http://www.integrativepsychiatry.net/genova_diagnostics_detoxigenomic_profile.html If the GSTM1 gene is absent, you will have trouble making and recycling glutathione. Here is an article about it: http://experiencelife.com/article/glutathione-the-great-protector/ I mentioned as well that my son regressed quickly after only missing a few days of the glutathione. She said the body cannot store glutathione--it has to be replaced regularly, so it made sense that he regressed quickly. I am not planning on having my son tested for the absence of the GSTM1 gene because there are other genes that can also cause glutathione problems as well. And I would continue the glutathione regardless of the results. But I just wanted to mention that gene because it is a common one to cause glutathione problems. She also mentioned that they feel the acethyl-glutathione is the superior way to get glutathione orally.
  11. Thank you for your reply! My son has one C677T mutation. To overcome the mutation (i.e to correct his methylation) he has been taking methyl B-12 shots every three days and 5-MTHF (methyl folate) 1 mg. tablets, 1/day. He has been on this methylation treatment for about 9 months. He also takes 4 CORE/day and borage oil for KPU and has been taking this for about 9 months. I guess that is why I was surprised that he still needed glutathione. You would think with treating the KPU and treating the methylation problem that my son wouldn't need glutathione. But obviously he does. So perhaps he hasn't been taking the methylation and KPU supplementsments long enough. Or perhaps he needs the extra detox help that the glutathione is giving him even though his zinc, B-6, and methylation problems are under control. Does anyone have any thoughts on this?
  12. Thank you! And thanks for replying to my post. Wishing your daughter well!
  13. Dedee -- I use Nutricology acetyl-glutathione, though the doctor originally gave me Allergy Research Groups'. But I believe the two companies are the same. Anyway, Nutricology is much less expensive--about $50 for 60 100 mg. tablets. My son takes 1/day, so it costs about $25/month. My husband is also taking it for detox, 1/day. He goes to the same doctor as my son.
  14. My son hasn't had an appointment since I posted. The doctor seemed to what to increase it by having my son eat more eggs, not by taking any supplement though I will ask at the next visit. My son has been eating more eggs, and he has been doing better, but I think the improvement is from the glutathione that was added about six weeks ago.
  15. My son's doctor recently added acetyl-glutathione tablets (Allergy Research, 100 mg., 1/day) to my son's treatment. I know most tablet forms of glutathione are not easily absorbed, but this one is supposed to be. He has been on it for about 6 weeks, and it seems to have significantly helped his OCD. He forgot to take it for two days over Christmas, and we noticed a regression. He started it again and we noticed improvement. But why is the glutathione helping? My son tested very high for KPU (30.5), and I have read that the zinc deficiency caused by KPU can lower glutathione. Is perhaps the improvement with glutathione showing that my son's KPU treatment isn't enough yet. Or is it showing that he needs extra help with detox. that the glutathione is giving him? Thanks.
  16. My son is being treated for lyme, co-infections, viruses, etc. and is currently about 75% improved. His only symptom has and continues to be OCD. Recently his cholesterol level was tested at 150. The doctor thinks part of his OCD is due to this low number and wants it raised. He would like to see it at 180. I was wondering what your children's cholesterol levels are and if raising them helped with OCD. Thank you!
  17. My daughter (non-PANDAS, non-lyme) is being treated for mold illness and candida. The doctor ordered the MTHFR test, and she has the compound heterozgous A1298C + C677T mutation. I have looked at other comments on the forum about this subject, but haven't found anyone with this particular mutation combination. If your child has this, how did your doctor treat it? (My son is currently being treated for his heterozgous C677T mutation with B12 shots and 5-MTHF 1 mg/day.)
  18. Hi Megan, So sorry that things aren't going well for you. I am not sure exactly what the TGF-B1 is, but from my understanding it is a marker of chronic illness of some kind. Dr. T told me it usually showed chronic lyme, chronic mold, or chronic strep (usually chronic lyme). Dr. Schwartz said he had never seen an elevated TGF-B1 in a patient that didn't have lyme. But I suppose it is a marker for just about any chronic infection. It was the biggest clue that started us down the lyme trail (that, and my son testing positive for KPU). I asked Dr. T to order it as part of the Shoemaker mold panel. My son is 17 and we homeschool. He is doing a regular school day now (was doing almost no school a year ago), but because of his remaining OCD, he needs me to sit with him with any of his high concentration subjects--math and computers. He also struggles with reading alone.
  19. Hi Megan, So glad to find another person going to Dr. Schwartz. I just think the world of him. Not sure what to say about staying on the zithromax except that if I were you, I would stick it out. It is possible it is a different strand of strep this time. In terms of Dr. Schwartz not finding mycoplasma, it has been my experience that he doesn't find infections when they are at a mild level. In other words, my son will ART test negative for something one month, but test very high for it the next. So most likely he had it in the first place, if that makes sense.) You could run blood work to check for mycoplasma as well as the EBV (Dr. S can order it). In terms of the lyme, if your daughter had lyme, she probably still does but just at a much milder level. Dr. Schwartz has compared my son's lyme to a "caged lion." In other words, the lion is caged but not gone. My son is on the Klinghardt lyme cocktail and will remain on it for 7 more months (for a total of 18 months) even though his lyme and co-infections (bartonella, babesia) are "caged." Lyme (or lots of other things) could be causing the joint pain. What does Dr. S think is causing the joint pain? Has he checked for mold illness? My son was originally diagnosed with PANDAS by DR. T (very compassionate man) in October of 2010. He was diagnosed with lyme in November of 2011. So we started out down the PANDAS trail. Strep was certainly part of my son's problems, but not the worst. So basically my son has PANS. In other words, many infections/problems trigger severe, debilitating OCD in him. In terms of PANDAS, Dr. Schwartz is as well versed in it as Dr. T, so we no longer see Dr. T. But Dr. S does not have access to IVIG or plasmapheresis, so he can't prescribe that. In our case, we didn't think IVIG was a good option since my son has lyme, and we were denied plasmapheresis by CHOP (insurance probably wouldn't have covered it anyway). At this point it, it doesn't look like my son will need either. Mostly I think he just needs to continue the treatment path he is on and needs time to heal. Dr. Schwartz was the fourth lyme doctor we saw. The first was very kind but had very little experience, so we moved on. The second and third both felt that my son simply had neurological problems and recommended Prozac (as did CHOP). My greatest respect for Dr. S was in his knowledge of the whole picture. I mentioned words like parasites, methylation, KPU, MMP-9, Shoemaker panel, Dr. Klinghardt, MTHFR, C4a/C3a, TGF-B1 and on and on and he was well versed in all of it. None of the other three lyme doctors we had seen were familiar with even some of these things. I knew we were in the right place when we found Dr. S. He understood the whole picture. My son wasn't going to be easy to treat. (Also, on the first visit he put his arm around my son and said, "Don't worry, Buddy. We're going to get you better." This meant so much to us as my son was very sick at the time.) We have been going to him for about 1 year and my son is at about 75% (many things are 100% better). He was at about 30% when we started with Dr. S. I don't mind sharing the things my son is on, but I do want to caution that they are specific to my son and his problems. Even supplements need to be taken under a doctor's orders. Here's the long list of things he is currently on He has been on other things for H. pylori, EMV, CMV, yeast, and strep, but they are no longer needed. 1. Klinghardt lyme cocktail. Here's a link. http://www.klinghardtacademy.com/images/stories/powerpoints/klinghardt%20lyme%20cocktail%202010.pdf My son is on the following variation of this "cocktail" that was specifically tailored for him by ART: 5 days on/2 days off for 3 weeks, then 1 week off. Repeat for up to 18 months: Artimisinin -- Biopure -- 5 scoops Lipohealth -- 3 scoops (for detox.) Buffered ascorbic acid -- 1000 mg. Pure Encapsulations -- 10 capsules Add 1/2 c. water and blend for 4 min. Galactose -- Biopure -- 5 t. (for detox.) Bio-Curcumin Phytosome -- (I use NOW brand) -- 10 capsules Deep-purple -- Biopure -- 5 scoops Neem -- Biopure -- 5 capsules Bee Propalis -- Beehive Botanicals -- 1 dropperful IMD -- Mountain States Health Products -- 5 scoops (for detox.) Quintessence -- Biopure -- 10 dropperfuls PC Samento -- Biopure -- 10 dropperfuls PC Noni -- Biopure -- 10 dropperfuls Whole Macuna Bean -- Biopure -- 2 1/2 t. Add 2 c. water, 2 1/2 c. grapefruit juice. Blend for just a few seconds. Take 1/2 c. at breakfast and 1/2 c. at dinner 2.Other supplements: Rechts Regulat -- garble every other day with 1 T. (for biofilms) Enula -- Nutramedix -- 20 drops day (for microbial defense) Pinella -- Nutramedix -- 8 drops/day (for brain-nerve cleanse) K. Bart./K. Bab., K. Merc./K. Harmoney blend that Dr. Schwartz makes up -- Biopure -- 10 drops/day (for lyme/co-infections) Core -- Biopure -- 4/day (for KPU) Borage Oil -- Pure Encapsulation -- 2/day (Omega-6) (for KPU) Basic B-complex -- Thorne -- 2/day 5-MTHF --1 mg. -- Thorne -- 1/day (for methylation) B-12 shots -- 0.09 ml. methycobalamin every 3 days (for methylation) Olive Leaf Extract -- 5-mg. -- NOW brand -- 2/day (for viruses) Chlorella -- 20/day (for detox) Magnesium -- 1 tablet/day (helps him sleep) Acethyl Glutathione -- Allergy Research -- 1/day (this was just added at the last visit)
  20. So sorry for what you are going through. We have been where you are, and it will get better! I would really caution you about Dr. T. He is NOT a lyme doctor and is not the doctor you want to be treating lyme. He a wonderful PANDAS doctor and a wonderful, compassionate person. But by his own admittance, he does not have expertise in treating lyme. You will need to find an LLMD. You will waste a lot of time (as I did) if you don't. Lyme and co-infections are very, very hard to treat and usually requires combo antibiotics. It takes a lot of experience in treating lyme to pick the right combination. Dr. T doesn't have that experience. (It is a little hard to tell that when talking to him because he tries so hard to please and wants so much for your child to get better.) Also, wanted to mention that most LLMD's have a waiting list so you may want to get on a waiting list while you decide what to do next. If you tell them you can take a cancellation, they can usually get you in quicker. My son's original Western Blot showed IgM P23, P66 and IgG P41. And he has lyme. So I would seriously consider lyme with your daughter based on her results. It is at least worth talking to an LLMD. Lyme use to be a scary word to me, but it isn't now. It is treatable and your daughter can recover. Hang in there!.
  21. My son's doctor, Dr. Schwartz, is an ART III doctor, trained at the Klinghardt Academy. He is near Philadelphia. He will treat with antibiotics if necessary, but mostly treats naturally. He is not specifically an LLMD or a PANDAS doctor. He would be able to treat whatever infection your daughter may have. My son's recovery has been slow but steady. He is on a natural antibiotic mix that was tailored specifically for him (as well as many other supplements). My son also has KPU and one C677T MTHFR mutation. Dr. Schwartz's fee is low, but his supplements are high. (But my son has lyme which is very expensive to treat. Your daughter may not need to take as many supplements as my son.) He is a brilliant man who is treating two of my other children (non-PANDAS) as well as my husband.
  22. My son's doctor recently added acetyl-glutathione tablets (Allergy Research, 100 mg., 1/day) to my son's treatment. I know most tablet forms of glutathione are not easily absorbed, but I was wondering if anyone has tried this particular form. Was it helpful or did you feel it was a waste of money? Thanks!
  23. My son's doctor recently added acetyl-glutathione tablets (Allergy Research, 100 mg., 1/day) to my son's treatment. I know most tablet forms of glutathione are not easily absorbed, but I was wondering if anyone has tried this particular form. Was it helpful or did you feel it was a waste of money? Thanks!
  24. My son tested positive for the "hookworm" parasite through the Metametrix complete stool profile and by ART. It was the first thing the lyme doctor treated because he felt lyme treatment would not be successful unless the parasite was gone. It was a turning point for my son. He only needed one 6-week treatment. Here was the (Klinghardt) protocol: 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 He had some nausea and blurred visions, but no other side effects. My son's only symptom is severe OCD.
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