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bws1565

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    bws1565 got a reaction from Robinhubb in New diagnosis   
    I watched a documentary this winter called "Healing From Vaccines" .  It was available online for free while running but you might be able to get it still.  That gave me the final push to do homeopathy.
    I believe my DD's problems are vaccine related too although I cannot prove it.  Her issues were executive function related, which are very painful for a bright kid like she is.  And she did have intrusive thoughts at one point too....
    I have stopped vaccinating about 7 years ago, although I was coerced into giving the MMR due to the outbreak in NYC. And YES I have seen reactions.  And now we have lost the religious exemption here.....   I will not put my younger kids at risk; looking at my options.
    I would advise you to stay away from ALL vaccines for your entire family. Perhaps have this reaction reported to VAERS, or at least put into her file.  Risk of a flu or even measles is just not worth what we are going through.
    To quote, "It takes a of a lot of money to get rid of what a free vaccine did".
  2. Thanks
    bws1565 got a reaction from Robinhubb in New diagnosis   
    We are having good success with homeopathic remedies.  I've been to a homeopath 4 months ago.  She put DD onto a annual program, with the remedies being changed about monthly.  We are currently moving onto month 4, and thankfully seeing good results.  This is not a quick fix though.
  3. Like
    bws1565 got a reaction from supermom13 in Why not start antibiotics anyway   
    Jumping in with a different perspective.
    Was your son vaccinated?
    Vaccine adjuvants are designed to cross the BBB, specifically aluminium.  There was much discussion on this site that Pandas is a version of aluminum toxicity.  With vaccines, the aluminum is designed to hold onto the antigen and keep it in the body long term; thereby introducing antigens into the brain as well.  It is believed that detoxing from aluminum and mercury helps quiet the immune system.
    We have tried selenium for mercury, malic acid for aluminum and other stuff as well.  She is probably not all clean, but definitely is aluminum sensitive- she cannot tolerate aluminum based deodorant.  She is currently using Diatomaceous earth for a slow detox for everything.   I think it is helping well.
    I have learnt about vaccine reactions about seven years ago, and have not vaccinated my kids since.  I have 2 totally unvaccinated kids, and several partially vaccinated.  It is a CRIME what pharma is doing to our kids without knowing the long term effects.  I can honestly say, VACCINES ARE NOT WORTH IT!  Which parent would not nurse a child through a bad case of pertussins or measles, and even sweat the time through the a hospitalization for physical problems versus dealing with what we are dealing with here?!!!  Just venting my pain.  I wish I would have known about this issue many many years ago.
  4. Like
    bws1565 got a reaction from LordChallen in Why not start antibiotics anyway   
    Jumping in with a different perspective.
    Was your son vaccinated?
    Vaccine adjuvants are designed to cross the BBB, specifically aluminium.  There was much discussion on this site that Pandas is a version of aluminum toxicity.  With vaccines, the aluminum is designed to hold onto the antigen and keep it in the body long term; thereby introducing antigens into the brain as well.  It is believed that detoxing from aluminum and mercury helps quiet the immune system.
    We have tried selenium for mercury, malic acid for aluminum and other stuff as well.  She is probably not all clean, but definitely is aluminum sensitive- she cannot tolerate aluminum based deodorant.  She is currently using Diatomaceous earth for a slow detox for everything.   I think it is helping well.
    I have learnt about vaccine reactions about seven years ago, and have not vaccinated my kids since.  I have 2 totally unvaccinated kids, and several partially vaccinated.  It is a CRIME what pharma is doing to our kids without knowing the long term effects.  I can honestly say, VACCINES ARE NOT WORTH IT!  Which parent would not nurse a child through a bad case of pertussins or measles, and even sweat the time through the a hospitalization for physical problems versus dealing with what we are dealing with here?!!!  Just venting my pain.  I wish I would have known about this issue many many years ago.
  5. Like
    bws1565 got a reaction from MaryAngela in Why not start antibiotics anyway   
    You are correct with this observation.  I never mention my vaccine position to anyone.  Once, I have had a local medical center confront me about my not vaccinating, but they were very respectful of my decision to my surprise.
    The only place where I adamantly refused to get a vaccine with my mouth wide open, was prenatally.  Otherwise I always say, "not at this time, thanks."
  6. Like
    bws1565 got a reaction from Sanda967 in Please help! Please help! Aggressive behavior/worse sleeping/possible illusion   
    Others have provided some responses, but I would like to offer some input on the freeze while playing piano.  
    Freezing while doing something can be classified as absence seizures.  While usually pediatric in nature and outgrown, there is a similar symptom from Bartonella.  So if your son is diagnosed with bartonella, this might be something triggered  by that.
  7. Like
    bws1565 got a reaction from Patmom in Please help my daughter!!! What is happening with her? Catatonia symptom   
    I am sorry to hear about your troubles and wish your daughter a speedy recovery.
    Unfortunately, vaccines can cause serious injuries especially the HPV.  There are many reported incidents regarding this vaccine.
    Definitely hold onto tightly to all medical records and if, unfortunately, your daughter might have some lasting injuries you should contact a lawyer and apply for compensation to the Vaccines Courts. Have the administrating doctor report this reaction to VAERS (Vaccine Adverse Effect Reporting System)  as soon as possible.
    Hope you might find any other solution to help you.  
  8. Like
    bws1565 got a reaction from PANS-mom in PANDAS and LYME in siblings   
    I think you should look into Lyme disease and all coinfections. If your family members were all exposed to the same environment, and having the same genetic makeup, it would only make sense that same problem is expressing itself, if somewhat differently.
     
    Read the book "Cure Unknown" by Pamela Weintraub . Great source of Lyme information. BTW do you live or vacation in a Lyme endemic area?
  9. Like
    bws1565 got a reaction from Hitman3161 in Does a positive 41 band on Lyme's test mean you have Lyme's di   
    Wondering about your OspC.  To quote Dr. Horowitz, "Borrelia specific bands reflect outer surface proteins on the surface of the organism that are seen more often in Lyme disease than in other infections.  These bands include the following five proteins, each with different molecular weights (31, 34, 39, and 83-93) If any of these bands are present on a western blot, there is a high likelihood that the patient has been exposed to Lyme disease, especially with the right clinical symptomatology........."
    He also believes that "Lyme disease is a clinical diagnosis, and lab results serve to support the clinical diagnosis"......
    Basically, a negative blood result would not indicate no Lyme.
    Also read in Cure Unknown, about the most accurate lyme indicating outer surface proteins that were removed from the lab testing, because of a trial to produce a vaccine.. and if these proteins were used, vaccinated persons would always test positive, even if no lyme were to be present. I don't know which ones they are though.
     
  10. Like
    bws1565 got a reaction from EAMom in New Yale Vaccine Study   
    Another fine point to the non vaxers!
     
    We have stopped vaccinating our children 5 years ago. I am sorry I did not know these things sooner, sorry about every vaccine I gave my kids.
    My older kids, born in the 90's were definitely adversely affected. The unvaccinated ones are such social, bright and agreeable kids.
     
    You can always decide to vaccinate, but never undo a vaccine.
  11. Like
    bws1565 got a reaction from mama2alex in New Yale Vaccine Study   
    Another fine point to the non vaxers!
     
    We have stopped vaccinating our children 5 years ago. I am sorry I did not know these things sooner, sorry about every vaccine I gave my kids.
    My older kids, born in the 90's were definitely adversely affected. The unvaccinated ones are such social, bright and agreeable kids.
     
    You can always decide to vaccinate, but never undo a vaccine.
  12. Like
    bws1565 reacted to MomWithOCDSon in Nodding Syndrome   
    Heard this story on NPR today, and I'm encouraged by yet another link between neurological disorders, pathogens and immune response. IMHO, each and every "find" like this strengthens the rightful destiny of PANDAS/PANs as a DSMV-worthy illness that will, one day, no longer be referred to as either "controversial" or "rare."
     
    Scientists may have solved the mystery of nodding syndrome, a rare form of epilepsy that has disabled thousands of children in East Africa. The syndrome seems to be caused by the immune system's response to a parasitic worm, an international team reports in the journal Science Translational Medicine. And they think it's the same worm responsible for river blindness, an eye infection that's also found in East Africa. The finding means that current efforts to eliminate river blindness should also reduce nodding syndrome, says Avi Nath, an author of the study and chief of the section of infections of the nervous system at the National Institute of Neurological Disorders and Stroke.
    But the only clue that seemed to hold up was that affected children lived in areas where river blindness was common. This clue was puzzling, though, because even though nodding syndrome is a brain disease, the parasite that causes river blindness doesn't seem to infect the brain. After returning from Uganda, Nath decided to search for an explanation. "He pulled all of the lab together as a team and asked us to each investigate different components" of the syndrome, says Tory Johnson, an assistant professor of neurology at Johns Hopkins who was working for Nath at the time. She is also an author of the new study. Johnson's assignment was to see whether the body's own immune system might play a role. So she began screening blood samples from people with nodding syndrome. Other scientists had also looked for an immune response. But Johnson's search was much more extensive. "We looked at everything that was available," she says.
     
    Johnson had discovered that in people with nodding syndrome, the immune system was targeting a protein found in certain muscle cells. It looked as if the body was attacking itself. The question was whether the immune system's attack also included the brain. So Johnson started looking to see whether the targeted protein was in brain cells. "And lo and behold she found that yes, it was not only present in the brain, there were actually large amounts of it present in neurons," Nath says. "So the story really came together very nicely."
     
    The full story, the team's hypothesis, goes like this: When a person is infected with the river blindness parasite, the immune system begins sending antibodies to attack the invader. These antibodies identify their enemy by looking for a specific protein in the parasite's cells. Unfortunately, the target protein in the parasite looks a lot like a protein found in certain brain cells. So these brain cells become unintended casualties of the body's efforts to protect itself. The discovery shows why it's important to treat children soon after they are infected with the parasite, Nath says. That might prevent an immune response that attacks the brain. And it would mean that the parasite can't be spread from person to person by black flies.
     
    Because nodding syndrome appears to be the result of an immune response, Nath says, it may be possible to limit brain damage in some children by using drugs that tone down the immune system response.
     
    The finding also raises the possibility that parasites, or other infections, are causing epilepsy in the U.S. and other countries, Nath says. "We know there are a large number of immune-mediated epilepsies," Nath says. "But the underlying cause is not clear." And there are plenty of parasitic infections in the U.S. Pinworms, for example, infect millions of children each year. It's possible that some of these infections are leading to epilepsy, Johnson says. "We don't know because we haven't looked yet."
     
    http://www.npr.org/sections/goatsandsoda/2017/02/15/515424720/scientists-may-have-solved-the-mystery-of-nodding-syndrome
     
     
  13. Like
    bws1565 got a reaction from rowingmom in Aluminum adjuvant, brain inflammation, behavioural abnormalities   
    This is why we do not vaccinate anymore. I have not vaccinated my 3 youngest kids. They are smart, social and understanding kids. My 2 oldest, born in the 90's when vaccines were loaded with mercury, have been adversely affected.
  14. Like
    bws1565 got a reaction from justkeeptrying in Trying new treatment   
    Just overall very happy. Better executive function, social skills, fatigue --- everything is moving in the right direction. We are not done yet though.
  15. Like
    bws1565 got a reaction from justkeeptrying in Trying new treatment   
    deleted
  16. Like
    bws1565 got a reaction from jan251 in Trying new treatment   
    I will focus on DD17, because she was the one with the most distressing symptoms.
     
    She was diagnosed with Pandas : social anxiety, time management issues, poor sense of direction, severe tactile sensitivity, fatigue, poor apetite. etc etc.
     
    Her diagnosis was changed to Lyme/Bart 5 years in. The treatment that we did for Pandas was only antibiotics, with great results, but then she could not tolerate it anymore. We started with a natural program with vitamins and herbs which she was on for the last year.
     
    We started this cream, which the fact that she does not need to swallow pills is in itself a blessing, about 4 weeks ago, as did some of my relatives.
     
    Since DD is very sensory she only allows me to apply once a day, very thin layer.
    My relatives have used it more aggressively with more dramatic results. The first symptoms starting at about day two, is severe fatigue. Then she developed a better apetite. By day 3 there was a pretty severe herx, real off the rocker. Crying, not knowing what she wants, irritable etc. This lasted about 2 days. and from there it was good going. It feels like we are going backward in time with us seeing some of the symptoms she has displayed a while back. Peeling off layer by layer. She did have a funny cross eyed look for a few days. I feel the sensory issues are improving ( she wore a stiff blouse she has not worn for 3 years). Social behavior is also getting better.
     
    My sisters son, went from totally time management inept to perfection in about 3 weeks. My cousins kids turned around behaviourally 180 degrees. Of course there are some bumps, but they are much more manageable.
     
    My DD tested high strep, and DNAseB titers. We never tested DS for strep titers. Both had 2 Lyme specific IGG bands. DD was positive for Bart and Mycoplasma. DS only mycoplasma.
  17. Like
    bws1565 got a reaction from Albymom in Am I imagining things?   
    Albymom,
     
    My dd16 hasn't gotten a fever ever since I remember too. In addition she had a borderline low white count. I was told this is a sign of a STRONG IMMUNE SYSTEM! until we hit upon Lyme. Of course this is a classic sign, meaning that the body has given up fighting and all viruses and bacteria just sit there.(and cause trouble).
  18. Like
    bws1565 got a reaction from Mom23boys in What do we know about chickenpox?   
    I don't what is the big deal with chicken pox, I and all of my siblings had it, as did my two older children. We all survived!! and got some TLC from mom as a bonus. The chicken pox vaccine was only promoted as a great tool "for saving moms from staying home from work when their child was sick" !!!
     
    Oh, yes, one good thing did come from the vaccine. Many parents are waking up to the reality that vaccines are not all great, by being mandated to vaccinate against this very mild disease.
     
    For immunosuppressed children, that is a different story. My friends child with asthma, on drugs, was not allowed to be exposed to chicken pox, due to severe problems associated with the drug he was taking and chicken pox. OK, these are the children that need the vaccine. I agree......
  19. Like
    bws1565 got a reaction from MaryAW in What do we know about chickenpox?   
    I don't what is the big deal with chicken pox, I and all of my siblings had it, as did my two older children. We all survived!! and got some TLC from mom as a bonus. The chicken pox vaccine was only promoted as a great tool "for saving moms from staying home from work when their child was sick" !!!
     
    Oh, yes, one good thing did come from the vaccine. Many parents are waking up to the reality that vaccines are not all great, by being mandated to vaccinate against this very mild disease.
     
    For immunosuppressed children, that is a different story. My friends child with asthma, on drugs, was not allowed to be exposed to chicken pox, due to severe problems associated with the drug he was taking and chicken pox. OK, these are the children that need the vaccine. I agree......
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