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sf_mom

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Everything posted by sf_mom

  1. Chronic sinus infections can be due to low MSH. Low MSH can indicate mold exposure. Yeast and/or fungus are often the cause of the continued stuffiness and do not respond to antibiotic therapies hence a chronic state. I would highly recommend a nasal swab to determine what is driving the sinus issue. There are antibacterials and antifungals that can be atomized to treat. If you are unable to get proper nasal swab from your current Dr. minimally ask to have MSH levels checked. Here is some information. Is there any visible mold in the home or has he ever been exposed to moldy or musty smelling environments. MSH - Melanocyte Stimulating HormoneNormal Range: 35-81 pg/mL Alpha melanocyte stimulating hormone (MSH) has multiple anti-inflammatory and neurohormonal regulatory functions, exerting regulatory control on peripheral cytokine release, as well as on both anterior and posterior pituitary function. In mold illness, MSH will be too low in over 95% of patients. This means increased susceptibility to mold illness, ongoing fatigue, pain, hormone abnormalities, mood swings, and much more. MSH is a hormone, called a regulatory neuropeptide, and it controls many other hormones, inflammation pathways, and basic defenses against invading microbes. Without MSH, bad things happen; chronic sleep disorders with non-restful sleep develop, and endorphin production is reduced, so chronic pain follows. http://www.survivingmold.com/diagnosis/lab-tests
  2. I would also gargle with diluted 35% food grade hydrogen peroxide a couple days before and for at least a week after. There is plenty of information on line as to how to dilute. It will help with the healing process and prevent bacteria from mouth entering blood stream.
  3. The test is not specific to strep or PANDAS. Our children had elevated Cam Kinase II indicative of PANDAS but ultimately had PANS due to chronic Lyme et al diagnoses.
  4. Babesia. Bartonella has a slightly shorter cycle. Was it around full moon on March 5th? Up to 3 days prior and 3 days post full moon? Actually, full moon I'd be considering parasites, protozoa and babesia.
  5. Treating Chronic Lyme et al is like a game of "Whack A Mole" per our LLMD. You pound one infection down and another one takes predominance. It could be viral or it could be a co-infection that impacts WBC like Erhichiosis. http://en.wikipedia.org/wiki/Ehrlichiosis For us, antibiotic rotations were always helpful when there was a slow and steady regression without obvious trigger. However, baseline improvement typically happened after initial herx response from these rotations. Noted herx often happened with 48 to 72 hours after rotation and increased symptoms that included rage behavior, OCD, tics. Once things settled from initial herx we often were able to picked up on cyclical die-off or increase in those particular symptoms out of no where. For us, it was typically every seven days.
  6. "Sometimes" steroid are effective for those with chronic Lyme as it helps with inflammation associated with infection/s. However, they can also suppress the immune response giving the infection a leg up hence more symptoms. I have chronic Lyme and developed seizures as a result of steroid use while pregnant (I had not been diagnosed with Lyme yet). However, a friend with chronic Lyme uses low doses of daily steroids to help with adrenal fatigue with good result. Due to my own experience with steroids we have not resorted to their use with our PANS children since Lyme Diagnoses even though our older son had a initial good response to a 5 day steroid burst. He was initially diagnosed with PANDAS until we did more testing for chronic infections. Our preference now is to use more natural anti-inflammatories like Enhansa, Maxi-Flavone, Taurine, etc.
  7. Here is a link to sign petition.... only 3 days left. https://petitions.whitehouse.gov/petition/prohibit-any-laws-mandating-force-and-requirement-vaccinations-any-kind/HW1B3YKz
  8. Yes. We have Anthem Blue Cross PPO (California). See above post on how and why we qualified for IVIG.
  9. We tracked IgG Subclasses inclusive of IgA and IgM over time which got worse (not better), long term antibiotic use and known chronic infections of TBI 'Tick Borne Infections' and viruses. We had no problem qualifying for monthly in-home nursing services and IVIG as a result. It is important to run subclasses via same lab pre-IVIG (every six months), during IVIG (just prior to each infusion) and post IVIG (about every three months). These records are invaluable to prove SID 'Selective Immune Deficiencies' and to qualify for continued treatments. We did not have to revaccinate either as a result of our ongoing records which was important to us since our older son's sudden on-set was 3 weeks post MMR and strep related illness.
  10. Here is someone in Germany that understands chronic infections in tonsils and has helped PANS/PANDAS kids. The particular procedure freezes the tonsils and does not remove them. You can read more about it via the link provided. http://betterhealthguy.com/regenerative-cryotherapy
  11. Low white blood cell count coupled low IgG subclasses can be a recipe for disaster. We regularly check CMP 'Comprehensive Metabolic Panel', CBC 'Complete Blood Cell' and IgG Subclasses inclusive of IgG 1 to 4, IgA and IgM. A history of these tests labs over time will help you qualify for IVIG infusions if ever required. White blood cells are the protectors of the immune systems. http://en.wikipedia.org/wiki/White_blood_cell IgGs are also ones ability to fight infection. Subclass 1 and 3 deficiencies are typical of chronic bacterial infections like Lyme. http://en.wikipedia.org/wiki/Immunoglobulin_G Here is some additional information on Low White Blood Count and what it means: http://www.healthgrades.com/symptoms/low-white-blood-cell-count
  12. I know a couple of people that use IV Rocephin with success. I think its worth a try.
  13. Food Grade - 2 1/2 pound container. http://www.earthworkshealth.com/products.php?gclid=CJX0iYi5oMMCFQdafgodql4AiA
  14. Our 10 year old son had sudden on-set PANS after MMR, strep related illness, virus within three week period at age 5. Our 7 year old twins regressed after MMR (age 2) with Autism symptoms. Girl: ASD, Boy: High Functioning ASD - Aspeger's We found all three children's PANS trigger to be lyme/bartonella/babesia infection which is also gestational/congenital.
  15. I would use the sheets for yourself. The sheet may cause too much of a herx for your son at this time. I would start with bands for him for at least 3 months first, then move to sheets. Bands are $19.99. It must be a grounded outlet that you plug into. Outlet checker comes with most products or you need to run rod directly into ground outside if there is not a proper outlet in home. I would test histamines first before supplementing. We tested via Lab Corp both Plasma and Determination Blood. Our older son's plasma is normal but his Histamine Determination, Blood is elevated at 51. We used Cromolyn and IsoQuercitrin since he ART'd for these and helps with food allergies. Ketotifin is a mast cell stabilizer and is a prescription. Over the counter products that help with histamines Benadryl, Pepcid AC, IsoQuercitrin, DAO, D-Hist, etc. Hope that helps. Good luck with your move.
  16. There are many things we have used beyond antibiotics to help treat Bartonella/PANS. It seems like your DS's body is having a hyper immune response to many things. Doxy might be worth a try. However, if it is not helpful I would try to focus on other alternatives that will help him detox, balance the immune response and slow the hyper immune response, etc. Here is two things to consider. EARTHING OR GROUNDING: I've been posting a lot about this lately but truly the most inexpensive treatment protocol with the best response. A good friend is also having a similar wonderful response with her son. I recommend reading the first 50 pages and last 30 pages of book that comes with starter package. It deals with electron deficiencies.... hence the hyper immune or allergic responses. Here is a little exert from book: The book goes on to say the negative charge is a relative potential depending on location. However, it is still the most negative charge available in our environment. It cans cause a herx so once again 'slow and steady' wins the race. Start with bands for at least three months prior to using any other grounding products. http://www.earthing.com/product_p/sobbk.htm The individual that gave me our earthing starter package wrote several pages for the book, has suffered extensively from Lyme et al (now considered in remission), is a well respected Lyme blogger and in the process of writing a Lyme book. I was essentially a non believer and now our entire family sleeps grounded nightly. HISTAMINES: Test histamine level and consider mast cell stabilizer with your Dr. We now use Cromolyn. There is also Ketotifin or other over counter supplements available for mast cell stabilization.
  17. I would retest for EBV via MDL Labs. A "full viral" panel.... they are better at checking for EBV plus they will check for additional viruses. Both Lab Corp and Quest do not offer the best testing for viruses and why you might be getting odd results. http://mdlab.com Again, it is highly likely you are still dealing with Lyme/Bartonella even though all symptoms remitted 3 years ago. It is extremely difficult to fully eradicate Lyme and Bartonella. It is always the goal to have the immune system keep the bacteria in check. With immune challenges symptoms can resurface. RowingMom posted a great video the other day regarding Lyme et al and the neuropsychiatric symptoms associated with these chronic infections. I am reposting as I think it could be helpful to you.
  18. Given your child's history I would highly suspect you are still dealing with Lyme, Bartonella and viruses. Many children with PANS have chronic Lyme et al and these particular symptoms are triggered or re-triggered by a bacterial infection, virus or vaccinations. This was true for our son who has gestational Lyme, was a typical child until his MMR, strep related illness and a virus all within three week period. Different child thereafter. Which lab did you use to test for EBV? I would also consider retesting for Lyme/Bartonella via Igenex or similar. Anxiety symptoms always make me think Bartonella. 2 weeks of doxycycline would not have treated re-exposure to Bartonella in August.
  19. Mary: Dr. T in CA is one of the best! Glad you are seeing results. Bands are different. You are grounding yourself. Many of my Lyme friends swear by it. Finally tried it and we are having great results. Not sure if EMF mitigation is the only thing it is helping with... Can cause Herx.
  20. I recommend "Earthing" your DD. Our DS has had sleep issues for the last 2 years. We tried everything (literally everything short of pharmaceutical sleep aids) and at one point put a mattress in our room so he wouldn't continue to wake us up all night long. Now that he has an "Earthing" pillow he sleeps 7:30 to 6:00 in his own bed and is 7 years old. However, I would not start with a pillow but bands for several months before moving to a pillow. It will cause a herxheimer response. http://www.earthing.com/product_p/sobbk.htm
  21. Nancy D: I am excited to read your post and see you are doing PK protocol with improvement. I am starting after winter break. It has made a huge difference for my friend but it took a good four weeks to "really" make a difference. I think GMA also does UVA treatments which has also helped a different friend tremendously. Ophelia: I highly recommend GMA as well. Initially when NancyD mentioned them to me I was unaware of too many people who had seen them. We are fortunate to have some really good Dr.'s in the Bay Area which keeps me near our home and not traveling north to Santa Rosa. I was also worried she was making the trek with her daughter and it would be no different then any other Dr. they had seen previously. Its a long way to go from the East Coast. Anyway, since talking with Nancy I have met or spoken with four individuals that go to GMA and feel they have helped tremendously. Like Sponaugle Wellness they focus on mold, environmental toxins initially. PK protocol addresses these issues, methylation and calms the brain. Again, it needs to be the full PK protocol.... many Dr.'s do IV PC thinking it is the PK protocol and it is not. I am also using BodyBio PC recommended by Patricia Kane in preparation for starting the full PK protocol in a couple weeks. Its expensive but good stuff. My hope is you keep searching in light of all your failed or neutral responses you have had from other therapies.
  22. I am not sure why the IVIG is not working. It doesn't work for all PANDAS/PANS children either. I just wanted to provide a few things to consider that you might not have pursued yet. Earthing: Perhaps you will be able to eliminate some of your sleeping aids. With everything go slow and steady. Only Earth yourself initially for an hour at a time.... once you are able to tolerate 3 hours then consider moving from a band to a pillow or sheet. A starter package with bands is only $19.99. http://www.earthing.com/product_p/sobbk.htm PK Protocol: There are a lot of practitioners that don't do the full protocol so I'd e-mail with Patricia Kane for a trained practitioner. Here is some information:http://www.pkprotocol.com My friend who has Lyme et al with chronic fatigue.... can not tolerate any exercise without needing to be in bed for hours post even a walk is having great success. She is on low dose cortisol because her adrenals are so messed up. Sponaugle Wellness Center: http://sponauglewellness.coms Best.
  23. That is funny!! I remember those days growing up in MN and shocking myself from the door knobs. The big lesson so far in the grounding experience is EMFs are an issue..... I thought we had bypassed that one thing. I think the more impacted by heavy metals you are the more EMF sensitive you can be. Of course, we had a heavy metals issue as well.
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