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


      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


  • Content count

  • Joined

  • Last visited

  1. For those of you who have tried LDI for strep - what has been your post LDI experience - does your child still get strep infections? if yes, how do they react to these infections - do they get regular strep symptoms (minus flare)? Do you see their immune system fighting these infections? My worry is that if i get my child "sensitized" to strep, his body is going to ignore strep as an antigen - his defenses are going to be lowered as a result of the sensitization. Hope this makes sense.
  2. Our ds was stable and then one day we missed giving him his antibiotics the entire day and only got to it around 8 that evening - with just the missed morning and afternoon dose, we saw some tics resurface. why do just two missed doses make the tics come back - given that he has been on antibiotics for a while,I would think it would take a couple of missed days for the symptoms to resurface. It’s very disheartening - seems they are always right beneath the surface. what has been your experience?
  3. LDI for Pandas/Lyme/tics

    Wondering why LDI is not big news in this community given all of its purported benefits - the information on the Internet seems to imply that is resolves all Lyme and Pandas issues. If this is true, why aren't people flocking to it.
  4. Hello - have you all heard of and considered Low Dose Immunotherapy (LDI) for your children. There is a very nice YouTube video of Dr Ty explaining the use of LDI for lyme/pandas. He is a very convincing speaker and we are going to talk to him. Wanted to know if you have any feedback for us.
  5. Can someone please PM me the full name of “ Dr. J” (in CT) who is reputed to be one of the best LLMDs in this forum? thanks
  6. Best treatment for Mycoplasma?

    Well, we are being treated by Dr B who knows about Lyme- we just did another Igenix test - let’s see what comes out of it. But right now it’s a daily battle...
  7. Best treatment for Mycoplasma?

    Adding update. Doc had DS on Clarithomycin with no effect after 2 weeks. Then switched to Minocycline. Titers for Myco are still over 5000(!). Any ideas on how to bring it down? Is this just a misguided immune system producing antibodies or is there really an infection that the body cannot shrug off despite multiple abx?
  8. Thanks! We tried Reston Hospital but they refused. We will try another hospital and see if they are open to doing the blood draw
  9. Hello All Our doc wants to check for Lyme and Bartonella and wants us to do Igenix and Galaxy Labs. Does anyone know a place where we can do a blood draw in Northern VA (regular labs and hospitals don’t do it) thanks!
  10. So we got a blood test done for DS 10 days ago who is going through a bad flare and it came back positive for Mycoplasma. He got 5 days of Azith from Pediatric doc but it’s had near zero effect. We want to go to a PANS doc and ask for something stronger- any suggestions on what could work best? DS is 12 yrs old thanks!
  11. Yes we did a pretty comprehensive screening for mold a couple of years ago. Didn’t find anything- including in the air vents or the bathroom walls (where it tends to get wet) Really wish we had a real life “Dr. House” who could help make sense of all the factors and permutations.
  12. I agree- it’s so frustrating to find the triggers. We are still dealing with the flare. DS is on Amox-Clav and Ibuprofen. Looking for some way to tamp the inflammation down - herbs and supplements are not working (or work too slowly) 🙁🙁🙁🙁 I sometimes feel like there are just no quick and good options when a flare hits- it’s abx and Ibuprofen or really nothing else- unless you want to try a major intervention like steroids or IVIg or Plasmaphoresis
  13. We tried Vit D mega doses last year and a whole bunch of supplements to fighting inflammation. I’ve come to realize that only a massive intervention can end a flare - and am thinking of steroids. prednisone did not work for us so are there any other powerful drugs that can do the trick? The alternative is to chug along for months on end with endless pills and blood draws and sleepless nights. Our DS is a trooper but I can tell his confidence and optimism is running out...
  14. Thanks bobh. My line of thought: Tics began manifesting mid-August so it can’t be school (still summer break) or home (nothing changed). Makes us think it must be environmental - and that narrows it down to an allergen or an infection. He did not have a sore throat or fever so I’m leaning towards allergen. But for the life of me I can’t figure out what that could be - DD is in allergy shots for pollen, grass, weeds and mold too (I think). Right now he is in a flare and on Ibuprofen and abx (Amox) - with limited effect. At some point we will have to discontinue the Ibuprofen. The last time we have DS steroid (prednisone) he had a huge spike in symptoms so we are leery of that route. Not sure if anything else exists out there to quickly ramp down inflammation. Thoughts ?
  15. Hello everyone- we’ve been away from this forum for a while. Quick history- DS had bad tics - vocal and motor for 4 years. Treated him for Lyme and Co infections for a long time and even did IVIg but nothing really helped. Cunningham panel was “likely” but not definite. Lyme bands were indeterminate. However When we began treating his allergies (through shots) a large percentage of them went away and we were able to take him off the SSRIs. Over the past18 months we have seen a pattern. He is symptom free for the summer and then when we get into Ragweed season his tics come back. They become really bad in Oct/Nov And they stay until next summer. We do sinus rinse and Quercetin and Vit C but minimal effect. What are we missing? We told our doctor( DrB ) and he does not think it is histamine related (since DS is being treated for Ragweed via the shots). Any ideas on what we should be doing?