Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy

      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010

Rachel

Members
  • Content count

    335
  • Joined

  • Last visited

  • Days Won

    7

Rachel last won the day on September 21 2016

Rachel had the most liked content!

About Rachel

  • Rank
    Advanced Member

Contact Methods

  • Website URL
    http://survivingpots.com

Profile Information

  • Gender
    Female

Recent Profile Visitors

283 profile views
  1. It's been awhile since I have been on to given an update on my son. He is doing well and finished a year of plasma exchange treatments in July 2015. His energy levels are much better but he is still on supplements and medications. He has not had any strep infections and still takes penicillin VK 250 mg daily. In addition to his supplements and medications, he also takes the 90 billion Ultimate Flora probiotic for men. My son is 17. He was 13 years old when the Cunningham Panel test was run and antibodies were found in December 2013. He started treatment with high dose antibiotics, then IVIG, and then went on to Plasma Exchange. My son has been on antibiotics since December 2013. What I am wondering about is how long is too long to stay on antibiotics? I am afraid he could have a relapse if taken off. His doctor wants to leave him on the antibiotics because of a possible relapse. Are any of you dealing with this situation? Would love to know your opinions.
  2. My son was treated with plasma exchange and his doctor did not recommend a retest with the Cunningham Panel. My son finished his treatment in July 2015 and has had no strep infections since. However, his doctor is checking for strep antibodies through ASO testing.
  3. Have you joined any of the Lyme facebook forums? Lyme is hard to get rid of and to treat. Have you been checked for coinfections? Low dose naltrexone is also being used by Lyme patients It helps with pain issues and helps regulate the immune system. Not sure how much it would help with some of your issues but it might be worth a trial. My best advice is to go see an LLMD and get back on antibiotics or try a herbal protocol.
  4. Anxiety/psych meds

    Have you tried magnesium? It makes a huge difference for my son. https://www.psychologytoday.com/blog/evolutionary-psychiatry/201106/magnesium-and-the-brain-the-original-chill-pill Here is a study on nutrients and children's moods. This article might be helpful also. http://vipbrainfitness.com/wp-content/uploads/Kaplan-Treatment-of-mood-liability-and-explosive-rage-with-minerals-and-vitamins.pdf
  5. Do You know the levels of your IgA? My son's levels were low but not considered deficient (41 and normal lab ranges 50-90). Research states that people may have a hard time tolerating IVIG with low levels of IgA. It has something to do with the body rejecting the doner antibodies. I tried to get my son's doctor to order an IVIG that did not contain IgA but hospital only used one brand and would not make exceptions. My son only had 3 IVIG treatments but after each treatment, his symptoms got worse. If you do have an active Lyme infection, your body will react to IVIG and plasma exchange. My son tested negative for Lyme and coinfections but I was still uneasy after I saw how his body reacted after IVIG. Testing for Lyme or coinfections is not always reliable. However, IgneX is one of the more accurate labs. If you really suspect Lyme or coinfections, you need to be checked before doing Plasma Exchange. Plasma exchange takes the good and bad antibodies out. It takes out what your immune system needs to fight off an infection. My son's body was suppressed with plasma exchange. If he had Lyme or any type of coinfection, he might not have made it. As far as I know plasma exchange is not used to treat Lyme or coinfections but it is a secondary treatment for Basal Ganglia Antibodies. Oh my! Just read your above post. Please don't attempt PEX. Get to an LLMD quickly as possible.
  6. From what I understand about these antibodies, they will keep reproducing as long as they are in the body. Once the body accepts them, the body no longer fights them off. So when you get any new infections, you add fuel to the fire. Once the antibodies take over, it gets harder for the body to fight off any infections. If antibiotics will not fight off the infection, then you are in another losing battle. My son tried 6 months of antibiotics before doing IVIG and his symptoms kept getting worse. Once you get the antibodies out of your system, your immune system should reset itself and antibiotics should fight off infections.
  7. Any advice for inflammation?

    Have you tried Low Dose Naltrexone? It is the only medication that worked for my son. My son had severe scalp pain. So bad, he would cry when washing hair in the shower, scalp stimulation would cause severe vocal tics, could not tolerate a haircut, had hypersensitive skin issues so bad he could not tolerate a bed sheet and daily persistent headache with pain level at 8. After taking 3mg of LDN for 8 weeks, all pain, and inflammation issues are gone. He is also homozygous for the same 2 gene SNPs that you mentioned in your post.
  8. I don't know the answer about the number of treatments. It will depend on how quickly your body responds and if your body will stop making the antibodies. My son's body could not fight off any infections, so his body kept making them until the treatment finally wiped them out. His immune system was suppressed with this treatment. Have you been checked for other autoimmune antibodies? My son's doctor always suspected he had others like AAG which is very hard to diagnose in children. Gillian Barra was always a concerned because all my son's neurological symptoms got worse after having a double round of flu. My son's case was complicated.
  9. http://vipbrainfitness.com/wp-content/uploads/Kaplan-Treatment-of-mood-liability-and-explosive-rage-with-minerals-and-vitamins.pdf I know this study was done in 2002 but I use several of the supplements mentioned in this study with my son. Thought the article might be helpful to someone else.
  10. IVIG made my son's symptoms worse also. After the 3rd treatment, his doctor realized that he needed Plasma Exchange. I know to get it approved with insurance, he used medical research articles. My son was 14 when he started treatment. The plan was to do 3 weeks of 3 a week treatments and then go down to 2 treatments 2 a week for 6 weeks, and then one treatment a week for 6 weeks and then 1 treatment every other week for 6 weeks. However,after my son dropped down to 2 a week treatments, about 2 weeks later his worse symptoms returned and he had to go back up to 3 treatments a week for awhile. I suspect the amount of treatment needed depends on the number of antibodies in the body and the body systems that are being affected. Before starting treatment, he had the surgery for a port. Treatment is much easier with a port. If you go this route< i would suggest that after you finish the treatment, you start on Low Dose Naltrexone. It helps regulate the immune system. My son started on it after the last treatment he had and he has not been sick or had any symptoms return.
  11. Interesting article. I wondered if those kids ever got treated and what the treatment was. However, it sounds like some of the kids have not made a full recovery and that's sad for them and their parents.
  12. Post ivig flare

    http://www.balancingbrainchemistry.co.uk/peter-smith/35/MTHFR-Gene-Mutation-and-Treatment-Resistant-Depression.html I don't know if this article would help or not but brain inflammation is mentioned. Do you take L-Methylfolate? If not you might ask you doctor about this supplement. My son did the 23 and me testing a few years back. When pain becomes overwhelming depression can creep in and you don't want that to happen. I don't know if IVIG would deplete any of your body's nutrients but PEX was hard on my son and I had to use additional supplements to help support his body when he was going through treatment. Have you been checked for B, iron, D, and magnesium levels? Just wondering if your treatment has depleted some things in our body and maybe this is why you are feeling so bad. I would be happy to share a list of supplements if you think it would be helpful.
  13. Post ivig flare

    My son did not tolerate IVIG because symptoms got worse. He was also pre-treated before having IVIG. However, my son had a low IgA and people with low IgA's have a hard time tolerating IVIG. There are different brands that contain little or none of the IgA. The hospital that my son was treated at only used one brand and nothing differently could be ordered. His doctor could not order anything different because of the rules and regulations of a teaching hospital. My son had to do plasma exchange because his body could not tolerate IVIG. Hope your doctor is able to get it figured out for you soon.
  14. The only way to get this figured out is to see if your PANDAS son has an active strep infection. If he does not, then his body is most likely reacting to the strep that your younger son is trying to get rid of. The body of a PANDAS patient is very sensitive when it gets exposed to this stuff. Since Tics have not stopped, you might ask your doctor about doing a different antibiotic. You might also need to try a different probiotic. Sorry, you are having to deal with this. Sometimes it's really hard to get the tic cycle to stop. Whenever my son was exposed to strep, vocal tics were the symptom that let us know something was going on in the body. We just took him to the doctor and did the rapid and culture strep test. The rapid test is not always accurate but went ahead and started antibiotics if positive. If culture was negative, we stopped the antibiotics and went back to the doctor's office to do more blood work if vocal tics continue. Other infections like,sinus and ear infections caused problems for our son.
  15. That's just my personal opinion about the Cunningham test because of what happened in my son's situation. My son is also on 250 VK penicillin daily. Not sure if a prednisone burst would interfere with those new results either. My son could not tolerate high doses or low doses of prednisone. It made his vocal tics worse. But if your son got a major infection and symptoms went through the roof, that's when I would recommend another Cunningham Panel especially if antibiotics are not helping.
×