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  1. Like
    cobygurl reacted to cobygurl in Help Please! Low Dose Immunotherapy?   
    Thank you so much for your reply!
    Can you tell me how old your boys are? I am wondering if 7 is too young for LDA.
    I am glad to hear your boys are doing well! Can you tell me what kind of flare you experienced when you started the strep? My son seems to be in a flare right now, do you advise to start when they are flared up?
    I really am just hesitant to try something that might make him worse temporarily even though it seems like it would be very beneficial.
    Are there any protocols in place when you do the LDA with strep? I read somewhere that some people take an antibiotic in conjunction.
    So I guess I'm still a little confused but my understanding is that LDA's end result is to help the immune system stop overreacting to the trigger? Does it also kill the virus/bacteria?
    Thank you!!!
  2. Like
    cobygurl reacted to colleenrn in Chicken Pox Vaccine   
    I have four children. My oldest received the chickenpox vaccine at 18 months and within a week had a high fever and head to toe rash. Not sure if it was related to the vaccine, but I have always thought so. When she turned 10 she had a severe case of shingles. It was awful.
    My three other children did not receive the chickenpox vaccine and all three of them came down with chickenpox at the same time. They were two, five, and seven years old at the time. I did not notice any increase in their PANS symptoms while they had chickenpox. If I had it to do over again, I would not get the vaccine. I feel that we were lucky that all three of them got chickenpox at a younger age.
    I also feel that my husband and I and my daughter who was 12 at the time got a booster just from being around them.
  3. Like
    cobygurl reacted to beeskneesmommy in Chicken Pox Vaccine   
    I do not think that there is enough data regarding one vs the other with our PANDAS/PANS kids. However, I would opt to skip the vax. I would rather my son actually catch the chick pox and gets it over with. There is not enough data regarding the longevity of the vax efficacy. If an adult male catches it, it is serious and can render him sterile. In healthy kids, it is an uncomfortable and unpleasant illness most of the time and once it is done, it is done. I was born in '64 and Chick pox was a right of passage, in a way. I am not advocating that you send your kiddo out to catch it, and the likelihood is less due to so many kids being vaxed for it now, but I feel that even offering this vax to the general population may be a bad idea in the long run.
  4. Like
    cobygurl reacted to rowingmom in Chicken Pox Vaccine   
    Make an informed decision, do not trust your PCP to make it for you.
    From the link directly above:
    Measles, mumps and rubella (MMR) and varicella-zoster vaccines should be avoided if immunity is significantly impaired (see 'Immunodeficiency and live vaccines', below).

    Immunodeficiency and live vaccines
    Live vaccines should not be given to:[2]
    Patients actively being treated for malignancy (chemotherapy, generalised radiotherapy). Patients within six months of such treatment. Transplant patients on immunosuppressive drugs. Patients within six months of bone marrow transplant. Within three months of adults receiving 40 mg/day of prednisolone for more than a week. Within three months of children receiving certain doses of prednisolone (2 mg/kg/day for one week or 1 mg/kg/day for one month). When steroids and immunosuppressive drugs are being given together (the specialist in charge should be consulted). Patients with impaired cell-mediated immunity or immunodeficiency syndromes such as DiGeorge's syndrome and severe combined immunodeficiency syndrome.  
    From the link directly above:
    Overvaccination not only exposes people to potentially dangerous adverse reactions, but it may damage the health of the greater community. Take varicella zoster (chickenpox), for example. According to Dr. Humphries:12

    "Prior to the universal varicella vaccination program, 95 percent of adults experienced natural chickenpox (usually as school aged children)—these cases were usually benign and resulted in long term immunity. This high percentage of individuals having long term immunity has been compromised by mass vaccination of children, which provides at best 70 to 90 percent immunity that is temporary and of unknown duration—shifting chickenpox to a more vulnerable adult population where chickenpox carries 20 times more risk of death and 15 times more risk of hospitalization compared to children. Add to this the adverse effects of both the chickenpox and shingles vaccines, as well as the potential for increased risk of shingles for an estimated 30 to 50 years among adults."
    A young child with active chickenpox, who comes into contact with an adult who had chickenpox as a child, is giving the adult a natural "booster" that will not cause symptoms but will strengthen the adult's immunity to the disease. But since the introduction of the chickenpox vaccine in 1995 in the US, followed by chickenpox vaccine mandates in the states, there are fewer natural boosters for the adult population. Now, there is a shingles (herpes zoster) epidemic among adults – and Merck is the sole producer of both chickenpox and shingles vaccine in the US!
  5. Like
    cobygurl reacted to MomWithOCDSon in Supplement Successfully Used For OCD   
    It really depends upon what else your child is taking regularly. Since OCD is an anxiety set of behaviors generally linked to lower levels of serotonin in the brain, some herbal and supplemental therapies such as NAC, inositol, Japanese knotweed, SAM-e, 5HTP, etc. have been found to be helpful. But if your child is already taking, say, a low-dose SSRI, some of those could be more problematic than helpful. Methylation can be another issue to consider, as some kids with certain genetics seem to respond more positively to certain things, while others have a hard time or react badly; this has been particularly the case (anecdotally) with regard to NAC. There are several threads here about that.
    Generally, it's been our experience that unregulated herbs and supplements tend to take longer to build up to sufficient levels in the body and inspire a positive reaction; my son has been taking NAC, and it took a few weeks for the benefits to be seen. But that's generally the case with prescriptions for increasing serotonin levels, too; most SSRI's require a period of 4 to 6 weeks to reach full efficacy.
    Not knowing what your child is already taking supplement or medicine-wise, I would take any particular option "low and slow," and only make one change at a time, so that you can truly ferret out what works and what doesn't.
    Good luck!
  6. Like
    cobygurl got a reaction from JuliaFaith in Do I Treat For Lyme?   
    Just wanted to update you all.
    Just spoke with our LLMD and he agrees that without symptoms (or minimal symptoms) we should not rock the boat, and continue on our current treatment without adding abx.
    He is giving us some anti-microbials like grapefruit seed extract and a few other things until our next appt at which point he will re-evaluate. We may run some more tests through Igenex.
    Thank you all again for your thoughts - I appreciate each and every one of you. I can't even begin to express my gratitude as to what a support you all and this forum have been to me!
  7. Like
    cobygurl reacted to JuliaFaith in Do I Treat For Lyme?   
    Hello--At last visit to Doctor, she said that ds was showing a little bit of Babesia/mico (with muscle testing) and put son on 100 Mg Minocycline 2xday plus a homepathic abx called Cryptolepis (10 drops/day).
    Now 3 weeks later he picked up a cough and when I heard it getting stronger, I switched to 500 mg mino 2xday and e-mailed doctor. Coughs used to be the started of a PANS episode but not sure if that is still true but with what doc. said 3 weeks ago figured mico. could be part of it so started stronger treatment.
    Funny thing is, the doctor (who I now see) also said 'my Babesia' was showing up a little even though I was symptom free. She put me on a homeopathic abx called C.S.A. Formula. She directed me to slowly increase. When I first started it gave me the worst headache so I backed off on dosage which got rid of headache. Still do not have any symptoms but will probably be taking this for a while. Was surprised at how strong a homepathic med could be! She said since I was reacting then my body needed it.
    My son did not seem to react to his homepathic abx.
    Now we are both on 'maintenance levels' of our homepathic abx. No increasing for now.
    So maybe all you need now are the supplements and maybe try a homepathic abx.? Something slow so you do not rock the boat? See what your doctor thinks.
  8. Like
    cobygurl reacted to rowingmom in Do I Treat For Lyme?   
    Once you have lyme, I don't think you can erradicate it. The different forms sequester in cartilage and other less vascularized tissues that are hard for both the immune system and abx to reach. I think the best we can hope for is to bring the immune system to a place where it can keep the infection from re emerging. Like chicken pox in children - if the immune system is suppressed in adulthood a shingles infection appears. Only in the lyme case, you would have a relapse.
    I think you can expect to have IgG antibodies to most infections if the immune system is working properly. If IgG is very high or rising and not declining, or if IgM is positive you may have an active infection.
    But it sounds as though your son's immune system is handling his infections properly; that he has reached a place of balance. He is showing no autoimmune response and is not symptomatic. This is how the body is supposed to handle infection.
    My suggestion would be to continue on the supplements and homeopathics you are using, they are obviously working, and stay alert for symptoms of relapse.
    Gee Whizz. You are at the place where we all hope to be . A kid with a body that reacts properly to infection. Not a kid with no infection, that is an impossibility.
  9. Like
    cobygurl reacted to Dedee in 23andMe - Can't Download!   
    Here are some instructions:
    1. Log into 23andMe and go to the tab that allows you to download raw data (top left on your screen). Download onto your hard drive.

    2. Go to http://geneticgenie.org/ and follow the instructions for running your data thru the app. Currently, the app is free but there is a request for a $10 donation. There are two profiles you can run - the methylation profile and the detox profile. The methylation profile is most popular and most researched but it’s good to have both. If you can only do one, do methylation for now.
    3. Print the reports. I do a copy onto a word file and save to my computer.
    4. You can use other apps that that will give similiar analysis. One is http://www.mthfr.net or, www.mthfrsupport.com.

    Hope this helps.
  10. Like
    cobygurl reacted to Hopeny in Has Anyone Tried Cowden Protocol For Lyme?   
    We've had a very good experience with Samento but not so good with Banderol. I am also a huge fan of Burbur for detox. The real Cowden protocol is quite complex so I have just stuck with the few my docs recommended. I do agree with the crowd, if no symptoms just wait. Our integrative MD has recommended Samento generally as a good anti microbial for general use. We are tapering off DD's Lyme abx treatment however I think I will keep her on Samento for a good long while. Once bitten twice shy.
  11. Like
    cobygurl reacted to SSS in Has Anyone Tried Cowden Protocol For Lyme?   
    My opinion, if you have no symptoms for Lyme or PANS,
    don't treat.
    That was also the opinion of our LLMD,
    no symptoms, don't treat.
    Keep healthy as best you can- like you are- wonderful :-)
    My dd did start the Cowden condensed (yes, symptoms and PANS)
    did okay for full 2-3 months,
    but then it became very difficult and we discontinued.
    I also used Samento and Banderol at one point, full dose,
    and those herbs certainly have merit (an affect on Lyme bacteria)
    But knowing what I know now,
    I'd let sleeping dogs lie when it comes to Lyme and co. if you are okay-
    The body is handling it.
  12. Like
    cobygurl reacted to rowingmom in Has Anyone Tried Cowden Protocol For Lyme?   
    We tried samento/banderol 6 months into treatment with biaxin/rifampin. The LLMD wanted to treat lyme with herbs but keep rifampin going for bartonella. This was unsuccessful and DD had completely relapsed by the next appointment 1 month later.
    Perhaps, with a lower bacterial load, it may help to keep the infection in check if needs be, but I agree with Mary wag. I wouldn't necessarily treat an infection that the immune system is now capable of holding in remission. The current thought in the lyme community is that these infections can't be eradicated, only held in check, like chicken pox/shingles, by a properly functiomimg immune system. I wouldn't use abx unless you really need them.
  13. Like
    cobygurl reacted to Mary wag in Has Anyone Tried Cowden Protocol For Lyme?   
    Hi there,
    Sounds like with the homeopathic and supplements your child is doing well. My np does not treat lymes if there are no symptoms. You might just want to keep supporting the body like you have been doing. But do keep an eye out for lymes symptoms. So glad to hear your child is doing well.
    We are treating with herbs right now for lymes. Has really helped my dd. She has been off antibiotics for 7 months. Herbs, homeopathic and supplements have taken her to a new level of healing.
    Are you working with llmd or a practitioner knowledgable in lymes.
  14. Like
    cobygurl got a reaction from nicklemama in NE PANDAS CONFERENCE   
    I am going too!
  15. Like
    cobygurl reacted to cobygurl in Anyone know where Dr. T is?   
    Dr. T has helped us tremendously. He was the one who prescribed the medication that turned things around for my son but as someone posted earlier, we have had some communication i. e not getting my message through (email etc...).
    There have been a few times that I have been patched through to speak with him as I have had a question and didn't get through via email, but mainly our experience is that we need to book another appt/consult to have our questions answered.
    That being said, he was the one who ran the tests we needed to figure out what was going on with our child, is very knowledgeable and you can get an initial appt quickly, which we desperately needed at the time.
  16. Like
    cobygurl got a reaction from GraceUnderPressure in Leaving for Colorado - prayer request   
    Good luck. Saying a prayer for you!
  17. Like
    cobygurl reacted to cobygurl in Help! Fever!   
    Please help...my 5 year son was complaining of a very sore throat today and now has just come down with a fever of 38.
    He has been so good lately with a 95% improvement after 3 refills of Acyclovir and I am now terrified and feel paralyzed and don't know what to do. I am fearful that all his tics and OCD will come back. In the past, we have given him ibuprofen for rage which makes it go away but he has not had a fever for so long. Do we let his body try to take care of the infection, or do we do the ibuprofen?
    Any thoughts are appreciated. Honestly just feeling scared and wondering if this is the calm before the storm as some parents have said that their child getting major exacerbations after fever.
  18. Like
    cobygurl reacted to cobygurl in Acyclovir and Coxsackie   
    Hi Linda,
    Thanks for the information! Just curious how long were you on the Acyclovir? How did you know when to stop or are you still on it?
    From your post, my understanding is that your DS has been on it for months...is that correct? I was told that 3 refills is probably the most my son can do (10 days each refill for a total of 30 days.). My son was 4 just turning 5. Maybe that is why he was only told to do 30 days total?
    Also, was it vocal tics your DS had when coxsackie hit? Do you take anything (meds, supplements or homeopathics) now to help?
  19. Like
    cobygurl reacted to cobygurl in Canadians?   
    I was curious if there were any Candians on the forum? I am in Nova Scotia and so far have needed to travel to the States for much of everything.
    In fact, trying to follow up on titres for DS to see if they've moved and they won't do the test here (i orginally had the blood drawn in NJ eith Dr. T.).
    Just curious if any of you have found any paediatricians or doctors who are versed in Pandas/Pans here in Canada and willing to help.
    Thank you
  20. Like
    cobygurl reacted to cobygurl in ASO Normal, Anti BNase Elevated   
    Hi, thanks for the response.
    He has had a couple of throat swabs before and all were negative. 2 ASO tests too were within normal range. This is the first time we've taken the anti bnase and it was elevated.
    The day before all his tics exploded last fall he did tell me something very bad was happening in his mouth/throat. At that point I knew nothing about Pandas:Pans. I just thought he had a sore throat and the next day it all started. His tics have not stopped since.
    It all makes me so sad and I remember thinking back in October when this all started, hopefully by his birthday I will have this all figured out but his 5th birthday is in a couple of weeks and I am just feeling so sad about it all.
    Thanks for the advice, I will ask to have his titres retested.
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