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sf_mom

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  1. Like
    sf_mom got a reaction from 3bmom in Antivirals   
    The most aggressive anti-viral protocol we have used over the last year was Engystol (3 x days) and Viragraphis (2 x day). Our entire family is dealing we a heavy viral component. We did try Olive Leaf Extract (high dose) and Oil of Oregano and they did not fully eradicate viruses after a years use. Both herbs, OLE and Oil of Oregano created herx like reaction so assumed they helped 'at the time'.
     
    Viragraphis is mostly Andrographis: Andrographis is the herb believed to have saved India from the 1918 Flu epidemic: http://en.wikipedia.org/wiki/Andrographis_paniculata
     
    You can find both products from Pure Formulas on-line. Typical treatment timeframe is 3 to 6 months per one of our LLMDs. Each of our family members broke out in some type of viral response 3 to 6 weeks after starting anti-viral protocol which consisted of mouth sores, face sores, leg sores... mostly canker sore 'like'. This is just antidotal information, so please take it how you like. Both of the LLMD we see have found a huge viral component in PANDAS like children. One of our Dr.'s does ART testing and every prior PANDAS child he sees has had a viral component and most often it was XMRV plus some other viruses. Again, some Dr.'s believe like worms or mold, viruses need to be dealt with to make full advances with Lyme treatment. Our experience was that treating the viruses was as critical to our continued success as specific combinations of antibiotics, KPU, Detox, etc.
     
    Our twins can not take pills so they take: Andrographis drops, Engystol and IMN-V 'Beyond Balance'. Two of our children appear to be viral free/or lower load and are no longer using anti-viral protocol.... However, we will not hesitate to retreat for a shorter period if there is an obvious virus in the household.
     
    Edit: XMRV is expensive to test for at $600.00 and often results can be unreliable. It is also my understanding that many viruses are smaller than antibodies potentially crossing BBB (you can research this on-line, Texas A & M notes, etc.) and it is also difficult to filter out viruses via blood product or IVIG. I personally believe it is especially important to treat ongoing for viruses while doing regular IVIG treatments.
     
    -Wendy
  2. Like
    sf_mom reacted to smartyjones in Am I foolish to think that my daughter is going to get better?   
    we are about 5.5 years from when I ever first heard the word "PANDAS". we were fairly lucky - it was about a month or so after my son's bizarre behaviors started. likely sometime - 6-12 months, like you beerae22 - after that a friend posted on facebook (not related to me, just in general)
    Life isn’t about waiting for the storm to pass… It’s about learning to dance in the rain. - Anonymous, more recently attributed to Vivian Greene
    I remember crying and crying and crying and thinking - I don't WANT to learn to dance, I just want it to STOP f-in' raining.
    and after some time of wallowing in that, a voice spoke in my head that said, "too bad, honey, it's raining and it's raining hard - so you better learn to dance or you're just going to be wet."
     
    Marianne Williamson once said when she gives advice, sometimes people say to her, "well, that's easy for you to say - you are not in this." and she says, "yes, it is - that's why I'm saying it"
    I want to say some things in that manner. I don't want to sound harsh - I know how you are feeling, because I've felt it -- I just don't feel it anymore. I'm on the other side and I know you will get there too. you just need to keep going in where you are now -- don't stop now - you'll be stuck where you are.
     
    yes, beerae, I know you want your life back and do not want where you are now. unfortunately, that is not where you are . so - yes, you are supposed to be grateful that she is in school and that she has friends -- NOT because she may not have that next year, but because those are wonderful things to be grateful about.
     
    it's funny how relative things are -- I recently did some work at my kids school with a very sweet 3rd grade boy who has behavioral issues, tricholomania, tics - and that's what I know in a few hours. and all I thought was - I hope his parents know how disregulated his immune system is and are working on healing it. I left that day feeling grateful that although it's been h**l and I NEVER would have chosen it, I know how troubled my son's entire system was, I know how we got him back on track and I have plans in place to keep him healthy and what to do when/if he slips. I know what he needs and how to work with him and it was NOT the level V school incompetent school officials tried to tell me it was 2 years ago. how many kids there also should not be there but no body knows it?
     
    you may find it helpful to use the Buddhist practice of seeing what there is to be grateful about what you are loathing at this minute. the times I have been able to do that - it's been bizarre -- it's like it just crumbles away -- maybe not the problem but the helplessness and despair.
     
    and no, you are not foolish - she will get better -- it just likely will not be on your time schedule. good luck
     
  3. Like
    sf_mom got a reaction from EAMom in New Lyme test   
    EAMom: From what I understand there is no way to test for B. Miyamotoi unless sample is sent to a research lab. B. Miyamotoi was found at Stanford Dish and Windy Hill.
     
    However, it is my understanding Advanced Labs Culture picks up all spirochete in sample and "believe" there are 11 known strains of Borrellia perhaps this includes the Miyamotoi Sprirochete.
  4. Like
    sf_mom got a reaction from JuliaFaith in Pans and started with Integrative MD~ seeking feedback   
    I would also suspect Lyme based on her current symptoms and test results. I would also have her properly evaluated for mold related illness. Those that have a mold issue don't often make much headway with antibiotic therapies and suffer from a lot of inflammation.
     
    If you are unsure of the possible Lyme diagnoses you can always do further confirmatory testing. Perhaps ask Dr. T to authorize the Epitope Band 31 Test via Igenex... That particular tests looks for the antigen of Lyme specifically for band 31 in which you have an IND. Igenex keeps blood samples for several months and would only require a phone call or faxing of order slip if she was tested recently.
     
    LLM does have a wonderful LLMD and is close enough to help. He could provide confirmatory Lyme testing, testing for co-infecitons, mold evaluation and integrative approach to Lyme treatment.
  5. Like
    sf_mom got a reaction from Momwithacause in Help with PANS   
    Why are you being prescribed Diflucan (flucanazole) and Omnicef (Cefdinir)? Does your son currently have a yeast or other infection? Yeast/fungus/mold can cause all the issues you describe and why you might be seeing improvement with treatment. BUT, improvement could also indicate there is some type of other chronic infection in addition to yeast/fungus/mold.
     
    We have boy/girl twins and our DD had language regression at 2 1/2 after MMR. Both would have been considered ASD, DS high functioning and they have been treated since 3 1/2 years of age by neurologist, biomedical autism specialist and LLMD in Northern CA. They are now 6 1/2 years of age and functioning up to grade standard or above.
     
    One has a nagalase of 1.3 and one has nagalase of 1.0. We have not treated with GcMAF yet. Both have immune deficiencies, one worse than the other and she receives monthly with low dose IVIG as a result. They have been treated predominately with combinations antibiotics, periodic rotation of anti-vitals all while we addressed methylation, detox, gut issues. They have the following gestational Lyme, Bartonella, Babesia, FL 1953, EBV, HHV6 and Coxsackies, ongoing yeast/mold.
     
    We've obviously attacked it from all angles .... not any one thing has been the magic cure all but all has helped to bring them towards recovery and living a normal life.
  6. Like
    sf_mom got a reaction from 3bmom in Sleeping too much/poor appetite   
    I think you can request test kit directly from SpectraCell and have your Pediatrician or similar sign off on requests. It is approximately $275 and then we file with insurance for reimbursement. Our LLMD runs the tests for us (has kits in his lab) but all our Dr.'s now use them to track vitamin and mineral levels.
  7. Like
    sf_mom got a reaction from MaureenL in Request for success stories please!   
    It also took a long time for us as well. 4 years and counting.
     
    However, I would consider all 3 of our children well recovered. We were dealing with many of the common issues that are associated with gestational/chronic Lyme: co-infections, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues, etc. We no longer experience the ups and downs of PANS with illness... none of our children currently have OCD or TICS.
     
    Our children have an awful disease but there were many blessings along with that diagnoses. All your efforts on your DDs behalf will by off in ways you will never imagine.
  8. Like
    sf_mom got a reaction from Missmom in Request for success stories please!   
    It also took a long time for us as well. 4 years and counting.
     
    However, I would consider all 3 of our children well recovered. We were dealing with many of the common issues that are associated with gestational/chronic Lyme: co-infections, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues, etc. We no longer experience the ups and downs of PANS with illness... none of our children currently have OCD or TICS.
     
    Our children have an awful disease but there were many blessings along with that diagnoses. All your efforts on your DDs behalf will by off in ways you will never imagine.
  9. Like
    sf_mom reacted to rowingmom in Buhner Protocol   
    @ Red - You are quite right. Herbs can be powerful because they contain many antimicrobial constituents, unlike antibiotics. Some contain components that act as efflux pump inhibitors potentially making the effects of antibiotics more potent.
     
    You need to read Buhner's books and understand how each of these herbs work, their different constituents, why they are effective on certain types of bacteria, and their potential side effects. Buhner does a wonderful job of clearly stating all of this information.
     
    If you think that the presence of ephedra compounds in the sida species is unacknowledged by Buhner, that you are outing his protocols, you are very wrong. There is much discussion of this in the Herbal Antibiotics: Natural Alternatives for Treating Drug-Resistant Bacteria book; which I why I recommend reading all of the books before undertaking the protocol, with or without the help of a physician.
     
    And frankly, even with the input of any physician/LLMD/naturopath I still educate myself on all aspects of any protocol. There is too much room for error and I TRUST NO ONE.
     
    I have given these books to both our LLMD and naturopath, and I hope they read them. I have learned enough along the way to realize there are risks to everything - even physician-led antibiotic therapy, which is why we continue to run bimonthly CBC CMP tests and to chart symptoms daily.
     
    If you have cured yourself of bartonella with biaxin/rifabutin, good for you. I am glad that you can come to this forum and state that the abx protocols others are using are useless. I would personally leave the abx decisions up to the LLMDs.
     
    We are having better results with Buhner than we had with abx. I have not made a secret of the fact that DD completed 2 years of multiple combo antibiotics before starting herbs.
     
    I am simply reporting my findings. Buhner has worked for us, but may not work for you or others. The choice is entirely yours to make.
  10. Like
    sf_mom got a reaction from rowingmom in confused. lyme? strep? band 39 IND?   
    The radio interview you saw on Lyme is from years ago. Keep in mind these Dr.'s do not like to make strong opinions on topics that are not well researched.
     
    The current 'state of affairs' is that many LLMDs are now seeing PANS/PANDAS/Lyme induced Autism children that present with less traditional symptoms of Lyme.
     
    In our experience as treatment progresses, there is less psychiatric symptoms and more traditional symptoms as the immune system activates and responds in a more normal fashion. Our older son does not have any obvious signs of OCD but now suffers from horrible brain fog, fatigue, stamina issues, etc. He will also mount fevers and get sore throats when ill when he didn't previously. He also had swollen and kissing tonsils at time of onset and for the first two years of treatment. We did not remove his tonsils and they are now normal in size (do not kiss at back of throat).
     
    You will often read on the forum that someone will have obvious symptoms of strep in a household (parent or sibling) but the PANS/PANDAS child will only have an increase in psychiatric symptoms and no other signs of strep. When culture they are positive for strep.
  11. Like
    sf_mom got a reaction from nicklemama in Never thought I'd be saying this   
    I really appreciate your post.
     
    We too never thought we were dealing with Lyme until we had antigen and PCR matches 'positive results'. We went to great length with our testing to prove Lyme. I was also convinced we were not dealing with mold. Kids C4A's were normal, we had touch/fixed everything top to bottom in our home 5 years ago, etc. I was very wrong and our older son's mold results were sky high comparatively. For us, it was so much more.
     
    However, with each intervention we are closer to our goal of recovery for our entire family.
     
    Nicklemama I can not say its been an easy treatment process and that I immediately felt better..... it took time. However, 4 years later I am off antibiotics, gained my spirit back, can be present to our children after 4 p.m., practice yoga 4 times a week and feel better than I have in years. I have been slightly symptomatic for 15 years and those symptoms worsened with each pregnancy and later with each illness and mold exposure.
     
    For those that don't live in endemic areas and do not remember a TICK bite, I thought I would post the most recent study regarding sexual transmission out Jan. 27th, 2014. Both my DH, I grew up in endemic areas, both had tons of exposure, my husband was only slightly symptomatic and was easy to treat with herbs and anti-parasitic. I was not symptomatic until I met him.
     
    http://www.researchednutritionals.com/information.cfm?id=292
  12. Like
    sf_mom got a reaction from CYAZ in New Member Immunologist   
    I have heard great things about Envita in AZ. I am not sure if you have checked for Lyme yet but I think they can help with extensive testing.
     
    http://www.envita.com
  13. Like
    sf_mom reacted to rowingmom in If baseline is not tic free then is it TS?   
    My suggestion is that you are still having an issue with toxins of some type (bacterial, pesticides, metals) and a decreased ability to deal with them.
  14. Like
    sf_mom got a reaction from JuliaFaith in confused. lyme? strep? band 39 IND?   
    I just reread your son's symptom list. I am curious what type of headaches he has and where are they located? Where is the location of sore neck.... base of skull, shoulders, side of neck?
     
    The urinary incontinence, dark circles could be mold exposure and like some infections mold will suppress the immune response. Is it possible he was/is exposed to mold. You might want to run some preliminary teats for mold. HLA markers will tell if he has the genetic ability to detox mold and lyme properly. If he can not, I would immediately follow that test with Real Time Lab Test for mycotoxins.
     
    Edit: I think RowingMom and I are thinking along the same lines. He has a lot of symptoms of Babesia.
  15. Like
    sf_mom got a reaction from JuliaFaith in Worse since IVIG - in a very bad place. Nowhere to turn.   
    You might try calling Sponaugle Wellness Center. They are in Florida. They are an inpatient facility that looks at all issues biomedically. I have heard of some great outcomes. Watch/read some of their testimonials.... "Ricky" is a guy who was in really bad shape. I think you would be well served to be inpatient with a facility that gets what you are going through and can help from a biomedical perspective.
     
    http://sponauglewellness.com
  16. Like
    sf_mom got a reaction from JuliaFaith in Babesia and Tics   
    Remember if its Lyme it flairs days 28 to 34 typically. Sometimes these flairs last a good six days. Its very scary but if you can increase the bentonite it might help.
     
    -Wendy
  17. Like
    sf_mom got a reaction from JuliaFaith in What supplements work best for inflammation?   
    This may sound strange but it could be a severe magnesium deficiency. I would ramp up on the magnesium until tolerable. Meaning until he gets loose stool. Our LLMD typically recommends 2,000 m.g. plus per day. Another one of our Dr.'s gives it via IV for those that suffer from migraines. She claims it works 100% the time. With all supplements ramp up slowly. Again, a test like SpectraCell will help you determine vitamin/mineral deficiencies.
     
    Like JuliaFaith and RowingMom stated is could also be the bugs. Per our Dr.'s, these bugs love to hang out on the nerve endings making them hard to treat and painful... specifically 'scalp' pain. The magnesium will feed them... keep them happy and also give him some strength to fight whatever he has. In the world of chronic infection, all these bugs including parasites get directly in the brain.... they love the fatty tissue.
     
    Something like ALINIA would be a good anti-parasitic that crosses the BBB and will also treat other chronic infections. A comprehensive stool analysis is helpful in determining if there are parasites. However, it doesn't always pick them up.
     
    Edit: Mold biotoxin's can also cause severe pain. I highly recommend the Real Time Lab test for mold in the urine.
  18. Like
    sf_mom got a reaction from JuliaFaith in Thought it was PANS but now not sure   
    I was taking with LLMD yesterday and said Alinia is a good cyst buster especially if cysts are in the brain.
  19. Like
    sf_mom got a reaction from rowingmom in Need help with Mycoplasma   
    I am in my 4th year of treatment for Lyme et al. Was highly positive for Mycoplasma. The combination of herbal remedies, combination antibiotics, immune support, detoxing with a rotation of therapies, alternative treatments and philosophies inclusive of ozone, hydrogen peroxide, EMF mitigation, Osteopathic, Homeopathic and Ayurveda medicine has brought my Mycoplasma titers within striking distance of normal.
     
    My Dr.'s are no longer concerned with the impact mycoplasma has on my immune system. I am currently off antibiotics. I do not believe any herb, combination of herbs, antibiotic, antibiotic combination, supplement or alternative treatment was independently the magic bullet to recovery. However, it was the rotation of these therapies that has brought a slow steady "saw tooth" recovery. Our children's body and myself were only able to heal so fast. I am still dealing with heavy metals (although greatly decreased), yeast/fungus/mold, IgM positive for EBV.
     
    There are some herbs specifically formulated for Mycoplasma which are very good like: Bryon White, A-Myco.
     
    http://byronwhiteformulas.com
     
    I would also recommend reading Stephen Buhner's book if you are interested in treating Mycoplasma with herbs. "Healing Lyme Disease Co-infections: Complementary and Holistic Treatments for Bartonella and Mycoplasma"
     
    http://buhnerhealinglyme.com/bookstore/
  20. Like
    sf_mom got a reaction from JuliaFaith in Need help with Mycoplasma   
    I am in my 4th year of treatment for Lyme et al. Was highly positive for Mycoplasma. The combination of herbal remedies, combination antibiotics, immune support, detoxing with a rotation of therapies, alternative treatments and philosophies inclusive of ozone, hydrogen peroxide, EMF mitigation, Osteopathic, Homeopathic and Ayurveda medicine has brought my Mycoplasma titers within striking distance of normal.
     
    My Dr.'s are no longer concerned with the impact mycoplasma has on my immune system. I am currently off antibiotics. I do not believe any herb, combination of herbs, antibiotic, antibiotic combination, supplement or alternative treatment was independently the magic bullet to recovery. However, it was the rotation of these therapies that has brought a slow steady "saw tooth" recovery. Our children's body and myself were only able to heal so fast. I am still dealing with heavy metals (although greatly decreased), yeast/fungus/mold, IgM positive for EBV.
     
    There are some herbs specifically formulated for Mycoplasma which are very good like: Bryon White, A-Myco.
     
    http://byronwhiteformulas.com
     
    I would also recommend reading Stephen Buhner's book if you are interested in treating Mycoplasma with herbs. "Healing Lyme Disease Co-infections: Complementary and Holistic Treatments for Bartonella and Mycoplasma"
     
    http://buhnerhealinglyme.com/bookstore/
  21. Like
    sf_mom got a reaction from BostonDad in !SEVERE DEPRESSION!   
    Check Amino Acids via Dr.'s Data or for Vitamin/Mineral deficiencies via SpectraCell.
     
    She could be depleted in Tryptophan or something similar. Low Tryptophan can cause low Serotonin which will look like insomnia, anxiety, depression, low pain threshold, aggressive behavior, abnormal appetite or food cravings.
  22. Like
    sf_mom got a reaction from rowingmom in Strange response to ADHD med   
    Daily Cholestryramine (prescription). From the article Cholestepure is also good but have not tried it. Per LLMD, there are supplements to help raise MSH. We have not used them yet so I don't have any information. I also think IV nutrients are helping with detox issues. For me, yeast diet. DS eats a very healthy but hard for him to maintain such a restrictive diet. Also, nebulizing Glutatione every other day.
     
    http://www.pureformulas.com/cholestepure-180-vegetable-capsules-by-pure-encapsulations.html
     
    Also interested in herbals like Byron White A-FNG.
     
    http://www.wayneanderson.com/pages/formulas/afng.html
  23. Like
    sf_mom got a reaction from 3bmom in Strange response to ADHD med   
    Have you checked her for mold? As you may remember we see the same ART Dr. as well as an LLMD in CA.
     
    Our older DS's C4As were checked initially and completely normal at 1,000. We then did Shoemaker panel and MSH was a little low and one other marker was a little high but nothing that screamed like he had a mold issue. He never came up for mold via ART but did for Cholestyramine for a brief period of one month during treatment and there was no visible mold in our home. We had touched every surface when we moved into our home five years ago with new carpets, paint, floor refinishing, tile cleaning and resurfacing, fixed all potential water issues, etc. It took a tree falling on our home this past summer to discover both white and black mold behind the walls. We then tested for mold via the Real Time Labs Urine Mycotoxin test. Our older DS's results were 6.98 for Trichothecene 'Black Mold' with a reference range of .18 to .2 and it was the same black mold found in our home after tree fell.
     
    We had ongoing yeast/fungal issues with all our kids, still do. Mold/yeast can definitely cause AD/HD symptoms. I posted a this particular article yesterday on mold/biotoxin's and thought it might be helpful to read.
     
    http://www.royalrife.com/mold_toxins.pdf
     
    Our older son has never been better since ongoing detox for mold. Initial detox'ing can make symptoms worse.
  24. Like
    sf_mom got a reaction from rowingmom in Mycoplasma P /From a tick?   
    Mycoplamsa is a bacteria that lacks a cell wall, is contagious and can also be transmitted by a tick. Pneumonia can be viral or bacterial based.... bacterial pneumonia's are often Chlamydia or Mycoplasma pneumonia. Chronic mycoplasma is typically treated with a combination of antibiotics.
     
    Was your son ever bitten by a tick? Have you had him evaluated for Tick Borne Illnesses that includes co-infections. Low blood pressure is a fairly specific symptom of Babesia. Many children with PANS have Babesia as one of their co-infections. See below.
     
     
    SymptomsSymptoms of babesiosis are similar to those of Lyme disease but it more often starts with a high fever and chills. As the infection progresses, patients may develop fatigue, headache, drenching sweats, muscle aches, nausea, and vomiting. Babesiosis is often so mild it is not noticed but can be life-threatening to people with no spleen, the elderly, and people with weak immune systems. Complications include very low blood pressure, liver problems, severe hemolytic anemia (a breakdown of red blood cells), and kidney failure.
  25. Like
    sf_mom reacted to rowingmom in Well this is encouraging....   
    There are a few posts in this blog about "weeding, seeding and feeding" the gut to address SIBO with Soil Based Organisms and resistant starch/psyllium. The comment sections are informative as well.
     
    http://drbganimalpharm.blogspot.ca/
     
    We started this protocol a couple of weeks ago after DD's yeast flare. So far, so good - itching and ticcing have resolved and the dark circles under her eyes are almost gone. DD is taking a rotation of probiotics, culturelle, align, RenewLife Ultimate Flora, PrescriptAssist, with 2 of the 4 mentioned daily; the most potent ones with potato starch/psyllium. So far we only take one dose of resistant starch/day, I don't want to overdo it.
     
    There are seven steps in all:
     
    Dr. BG's 7-Steps Paleo* Gastro IQ SIBO Protocol
    HOW TO CURE SIBO, SMALL BOWEL INTESTINAL OVERGROWTH (with major contributions from Tim/Richard/Marie/FTA) 1. Fermented veggies made the ancient way with organic dirt-covered vegetables, ex. kraut, kvass, kim chee, kefir, etc. Read Sandor Katz.

    2. Ancient heirloom potatoes, tubers, roots that are low glycemic index (or high if good insulin sensitivity) and ancient heirloom grains, legumes, lentils/dal that are low glycemic index (or high if good insulin sensitivity), prepared the ancient way (soaked, fermented, etc)

    3. Soil-based probiotic 1-2 daily if not severely immune compromised (Bacillus licheniformis, Clostridium butyricum, etc)

    4. Raw PS (potato starch) 1-3 Tbs + Psyllium (if not allergic) 1 Tbs + high ORAC green powder (I like amazing grass, LOL) in 2 cups plenty of water

    5. Exercise low-moderate intensity one hour daily continuously (10,000 steps) to move the gut/peristalsis and overcome broken myenteric musculo-neuro junctions

    6. Avoid allergenic foods (corn, soy, gluten/wheat, dairy, nuts, egg whites, etc). Avoid GMO products and livestock/poultry fed GMO crops (corn, soy, etc).

    7. Heal hormones and immunity -- take adrenal support, liver support, antioxidants etc (I use biocurcumin and berberine to combine with anti-microbials/anti-parasitics). This is particularly imperative for those with reactive hypoglycemia and BG crashes when they go longer than 3-4 hours between meals.

    Optional
    8. If the above fail, then you have more fastidious overgrowths and require 2-3 rounds of anti-parasitics/anti-microbials/anti-fungals. See what worked for my family and I HERE. If the above still does not fix SIBO, then consider mercury toxicity. Mercury saturates and kills microvilli in the small intestines and also disables enzymes including digestive enzymes.

    Here is the first step, the others follow:
     
    http://drbganimalpharm.blogspot.ca/2013/11/how-to-cure-sibo-small-intestinal-bowel_10.html
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