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NancyD

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Everything posted by NancyD

  1. Hi Cobygurl, The flare was not nearly as bad as when she herxed on IV abx for Lyme. It lasted about a week. Increased anxiety/OCD/intrusive thoughts. We started with 20c, which is 500 times more diluted than 15c, yet that was too strong for DD. My DD is extremely sensitive to everything. That is why I want the next LDI strep and Lyme dose to be between 25c and 30c. From what I understand, the length of time of the flare is directly related to how strong the next dose should be. If strep is not a problem for her then she won't flare. If she flares at all from any LDI then it's a good sign it will work. The trick is to start very diluted and go slowly so there is no flare. But you do have to start somewhere. 15c is a low dose for many, but for those who are very complex and sensitive it can be too high. If that is the case with your DS then ask for 20c. There is not much you can do for a flare except detox more and take something for the inflammation. She takes Chinese Skullcap for inflammation, along with Querciplex, curcumin, Omega 3, etc. She also takes high doses of Ashwagandha, GABA, and magnesium, which helps with stress and anxiety. For detox she takes apo-Hepat, charcoal, pyrophylite clay, chlorella, Robert's Formula, milk thistle, lots of water, Epsom salts bath, etc. BTW, you should check to see if there is an LDI for coxsackie. There may be.
  2. Cobygurl, my DD19 has tried LDA for mold and LDI for Lyme, strep, and autologous - all sub-lingual. Thus far, she has tried 3 doses of LDI Lyme (14c, 17c, and 20c) and 1 dose of strep (20c) but unfortunately she flared from each. So she has to try a more diluted dose - maybe 30c. She also tried 3 doses of LDA mold (12c, 11.5c, and 11c) but she had no reaction whatsoever so she will try 10.5c next. She had some success with LDI autologous on the first dose (12c), which I'm guessing contains strep from her sinuses. The purified proteins are a lot stronger than the proteins in the autologous LDI, which was created from a nasal wash. With the first dose my DD had a 20% improvement in her anxiety/OCD/ intrusive thoughts for 4 days and with the second dose she had a 20% improvement for 7 days. She will try a booster in between doses to see if she if she can extend the good days, but she should see improvement with every core dose. Once we have a steady 20% improvement we will circle back to LDI strep and Lyme. I am very hopeful about LDI!
  3. Urine is best. Here is a link to understanding the pros and cons of each method, including spinal. https://www.integrativepsychiatry.net/validity_of_nt_testing.html If she does well with GABA I would try phenibut, which is a precursor to GABA and crosses the BBB quickly. I purchased the purest form from Happy Hippo.
  4. Here's a recent interview he did with Dr. Neil Nathan re LDI http://www.gordonmedical.com/unravelling-complex-chronic-illness/low-dose-immunotherapy-a-new-healing-tool/
  5. I believe Ty Vincent is in Hawaii, in addition to Alaska. He's awesome! http://www.mat-suim.com/index.cfm/fuseaction/site.physicians/action/dtl/phys/99801759.cfm P.S. I would go in a heartbeat!
  6. Terrible. She's been home for two years on daily IVs. Everything seems to cause an autoimmune response. Even IVIG. Severe anxiety, OCD, and intrusive thoughts. We have just started Low-Dose Imunotherapy (LDI) for Lyme. I'm hoping that will help!
  7. One high-dose IVIG infusion eliminated my DD's vocal and motor tics back in 2008-2009. It took about 9 weeks to see any results but by 12 weeks they were 75% gone. It took up to a year for them to be 100% gone. OCD, on the the other hand, was not helped at all by IVIG, and in fact, got worse. We experienced the opposite of what most people are told. My DD was 12 at the time and I was told (by Dr. K) because of her age IVIG would likely not help the tics at all. I was very happy to prove him wrong!
  8. I agree with Rowingmom...you can go as high as DD's bowels will allow. My DD needs at least 560 - 700 mg twice daily of magnesium glycinate. On days she takes mag sulfate and Lactated ringers via IV I cut down on the oral dose.
  9. I am SO SORRY to hear you are getting no help from IVIG! My DD18's OCD got worse with each infusion. The more treatments we tried the sicker she got until she had to leave school in her junior year. She has been home in bed for 18 mos. I have seen her experience so many of the things you write about and it breaks my heart. No one should have to go through this! My DD was recently dx with mold toxicity and the main focus has been on clearing her detox pathways. Last month she had a PICC line inserted for IV abx and recently she started the PK protocol - mentioned above in SF Mom's post. WOW, for the first time in 18 years of trying one treatment after another, we saw an overnight difference in DD when we switched from the more generic Phosphatidyl Choline to Essentiale N that Patricia Kane recommends. For DD, I'm hoping this will be key to getting her well. Like you, we have seen one doctor after another. We have traveled all over the country looking for answers. We finally found a practice in CA that does not seem daunted by my DD's complex health issues. After the initial visit in person we do all follow-up visits by Skype every 3-4 weeks. When I need an urgent response I get an immediate email or phone call back. I'm not left waiting days or weeks to hear back. The doctor is compassionate, responsive, thorough, and very creative in her thinking. Moreover, she doesn't focus on just one piece -- she addresses EVERYTHING and very methodically. I have searched years for a doctor like this! If you would like to know the name of this doctor or practice, please PM me. My heart goes out to you!
  10. Don't know about hospitals but we live on the east coast and go to an AWESOME practice in Santa Rosa that treats DD's Lyme/Bart/Babesia/PANS/mold toxicity. If you need the name PM me.
  11. I agree about Epsom salts if she'll do a bath. Is lemon the problem? Will she drink plain bottled water? Because water is so important for detoxifying. You can put drops of apo-HEPAT by Pekana in her bottled water and she won't even know it's there. I put 20 drops in 3 bottles each day and my DD cannot taste it (and she's very sensitive to taste). apo-HEPAT detoxifies the liver, gallbladder, and pancreas, and increases kidney and gallbladder secretion, stimulates circulation, and improves the lymphatic system. Is she taking milk thistle? That's great to detox the liver. How about ALA or NAC, if she can take those. Will she take a sauna? You can purchase a portable FAR infrared sauna. That's great for detoxing. Does she like gentle massage? That's good too. IV glutathione is excellent, if she'll do IV. My DD tried the lipsomal glutathione when she did the RealTime Labs mycotoxin panel and said it tasted AWFUL. Make sure her bowels are moving. I think you're giving her lots of magnesium. GI Revive works great to move bowels! Get the caps, not the powder though (my DD can't stand the taste of the powder and water).
  12. Try sending again. I emptied my box. Nancy, I tried to send you a pm but your mailbox is full.
  13. Healthcare Advocates in Phila: healthcareadvocates.com
  14. Stainless steel contains nickel, which is known to be carcinogenic.
  15. A silver amalgam consists of mercury mixed with silver, tin, zinc, and copper. Porcelain would be much safer.
  16. It might help ... everyone responds differently. Another suggestion, if that doesn't work and she can tolerate touch, is reflexology. I have had a lot of heel problems over the years, mostly due to Bartonella. Reflexology helps my leftover heel and jaw issues, not to mention reduces my stress levels tremendously. I go once weekly. Acupuncture is supposed to work faster but it didn't for me -- Reflexology has much greater impact. Sure wish I could get my DD to do it. I think it would be GREAT for anxiety ... but she doesn't like anyone to touch her.
  17. Is she definitely taking Amour Thyroid and not the generic, levothyroxine? Does she have an increase in symptoms? See http://thyroid.about.com/od/thyroiddrugstreatments/a/overmedicated.htm. I don't know the answer to your question. I would check with you doctor on this. Nancy- is it typical for T3 to go up (high range now - was in normal range) after starting Armour Thyroid? T4 is still low. Thanks *new lab results in above post
  18. It was up until 2 days ago when she refused to take it. It puts her into a deep REM sleep and either the Bart/Babesia treatment or detox for mold toxicity is causing bad nightmares. I checked her Glycine levels from last month and they were low. Still working well?
  19. My DD has taken it for Babesia and does quite well with it. So much better than Mepron! We're switching back to Artemisinin.
  20. Good question...I'm not sure about her glycine levels, but I bet you're right. I was so surprised how well it worked for her. All our paperwork is back home -- we're in CA doing IV detox this week. I'll check when we get back. I tried it on myself last night but it did not help me, so perhaps my glycine levels are normal. For me, I love Natural ZZZ and Zen.
  21. For anyone looking for help in getting (and keeping) your children to sleep, Glysom is an option to consider. For many years my DD had great difficulty getting into a deep sleep. Until we tried Glysom this week. WOW...I have never seen her sleep as well (and deeply) as she has this week. It works fast too! Here's an article that discusses the different sleep cycles and options for improving sleep: http://www.holisticprimarycare.net/topics/topics-o-z/vitamins-a-supplements/1249-a-new-approach-to-promoting-healthy-sleep-
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