Tamistwins

Awesome!

Thanks I'll look into emptying inbox!

Nancy I live in nj

Thanks so much Nancy! Still not sure where to go from here, do you know if Dr. Jones treats for this?

To all those smart parents out there in cyber world(lol) I just got back results for the MTHFR and all my 3 kiddos have Heterozygous mutation for the C677T gene. Can anyone explain what this means and what kind of behaviors can it cause if any. How do we treat? All 3 of my children confirmed PANS/Lyme. Thank you in advance! Tami

Please keep us posted, my son too suffers from mycoplasma.

Sending good thoughts and praying for speedy recovery!

My son is a couple months shy of 3 yrs old and I too am curious to see others respond. There were phases when he too would spit on the floor and or bed. When he gets very upset and crys he also drools a lot on to the floor(otherwise he is not at all a drooler) interested to see if others think this is a tic.

Hi have you tested for mycoplasma pneumonia? Maybe you need to change to something like biaxin. Your son sounds so similar to mine:( he also makes me take such part in his OCD. I need to repeat I love you too frequently maybe 5 times and if not the right way do it all over again. Have you checked for Lyme, the walking back and forth at night seems to be related to thy as well. I hope things improve soon!

Hi I'm sorry I don't know your dd's story. However, a metallic taste may be from a strong abx. I am so sorry I hope you get some helpful responses from others that may have had similar experiences. Good luck!

Thank you coco I agree 10 days is not enough, I will look into that stool test. Thanks everyone! quote name='coco' timestamp='1334481962' post='137414'] I would also agree that gut permeability and yeast are huge issues and complex to irradicate and repair quickly. It's a multi-layered approach. I would recommend having your dd's stool tested. Metametrix offers a comprehensive test selection which can tell you definitively what you're dealing with. Then you can begin healing her one layer at a time. Intestinal yeast is really bad and needs to be treated longer than 10 days, and her body needs support while being treated. Naturopathic doctors usually have these test kits on hand and can help select the best one. For us, it's really been a multifaceted approach that has helped the most.

I do have an order in for allimax (garlic) I heard good things about it. The reason why I said no leaky gut is simply because I guess no doctor has ever mentioned that it may be an issue. But we all know how wonderful these doctors are lol This is an explanation I got from someone on another site: Ifng (interferon-gamma) is involved in the regulation of the immune system and inflammatory responses. They are proteins that essentially direct white blood cells to the site of an infection to fight it and stimulate macrophages, cells that performs a similar function against bacteria and other pathogens. uote name='LLM' timestamp='1334479059' post='137412'] Here's the wiki page that explains IFN-g http://en.wikipedia.org/wiki/Interferon-gamma IFN-γ, or type II interferon, is a cytokine that is critical for innate and adaptive immunity against viral and intracellular bacterial infections and for tumor control. Aberrant IFN-γ expression is associated with a number of autoinflammatory and autoimmune diseases. The importance of IFN-γ in the immune system stems in part from its ability to inhibit viral replication directly, and most importantly from its immunostimulatory and immunomodulatory effects. IFN-γ is produced predominantly by natural killer (NK) and natural killer T (NKT) cells as part of the innate immune response From reading the rest of the article, what I gather is that your daughter has had very high candida issues and her body has learned to develop lots of t-helper cells to fight it. In the process, it's developed a very high inflammatory response. I'm curious why you say you don't have a leaky gut issue. My understanding is that candida attaches to the inner lining of the intestines and grows little legs that bore into the lining. This boring creates inflammation and greatly increases gut permeability. So high candida infections would greatly increase your odds of having a leaky gut. Once you have a leaky gut, all sorts of nutritional imbalances can occur and you'd see a variety of neurological issues as a result (regardless of any current infection beyond candida). So it's surprising that you'd say a leaky gut wasn't involved. Curious why. I might have this reversed, but I think diflucan is for localized yeast infections and nystatin is used for systemic infections. If the infection has spread beyond the gut, she may need the one used for systemic infection. There are also natural remedies - garlic pills have helped my kids a lot and we take one at every dinner. When we started this, I saw die-off behavior in my son, even tho I never suspected yeast was his problem. A week later, his behavior was way better and his cravings for carbs dropped a lot. His focus and memory also improved. I guess my only advice is to not underestimate the power of yeast and how much the behaviors can look like Pandas. I was amazed. Gut health has now become a huge focus in our house.

Fighting mom thanks for your prompt response:) we don't however have issues with a leaky gut.

Hi I was wondering if anyone can explain to me in laymans terms what this test shows. An immunologist we saw tested for a bunch if things and found that my daughter had extremely high candida over 6000. The test showed a high IFN-g response to candida Ag. Can anyone explain this to me what is an IFN-g response? Thank you for any explanations! She was given a 10 day course of diflucan, I see no changes in her behaviors. She has been on diflucan in the past. Any other suggestions? She also showed relatively low IL-6 production with LPS(TLR4 agonist) My two Boys showed Low production of pro inflammatory cytokines in response to TLR agonists. What does this mean?

Hi Colleen my son used to always complain his tummy hurt. I also thought he went regularly but when I took him to gastro she felt he was full. We use miralax when it's an issue. Make sure you give a good probiotic as well. Feel better, Tami

Can Babies Take Probiotics Too? The good news is that babies can also take probiotics. Indeed probiotic supplements have been scientifically shown to help infants! Especially when in abx. Just googled that.

Make sure you get some probiotics in him since he had Iv abx, now that we know the gut and brain so connected.

I don't know the answer to your question but wanted to say congratulations!!!! Try to enjoy your grandchild and not worry too much, easier said than done I know.

Feeling the urge to urinate frequently was one of the first symptoms that my daughter presented with or at least I thought at the time. This is definitely a pandas symptom. It is an urge or a feeling that he needs to go yet, many times does not need to go. Before I knew what we were deali g with I had taken my daughter to a urologist. However, the symptom subsided with abx. This is a symptom that seems to return in a flair. My daughter was so young at the time an she would cry, scream, tantrum she needed to go after we left the house web though he just went. I used to think she just liked visiting dirty public restrooms. Have you asked for any strep blood work to be done to see strep titers? Where do you live you should see a panda specialist sooner than later.

both my children were approved with our previous bc/bs whih was an hmo and we got approved for IVIG and for out of network benefits. However, now that we have Anthem which is a ppo my daughter was denied. Apparantly my son was approved for a yr in error but they can not go back on their decision. I am upset I thought this insurance would be better since we do ave out of network benefits. Don't give up go for an appeal.

My daughter got her braces last June and had no difficulties or worsening of behaviors due to the braces.

Biaxin or azithromycin but 5 day course not enough. See if you can get a month supply of biaxin.

Do u mind to share the name of this other llmd, u can inbox me if you don't want to post on here. I don't think u need to worry about seeing another llmd. I think as long as your llmd keeps you on an abx that protects well against strep in addition to fighting off the other issues then you should be fine.

Peggy, I'm sending my good thoughts and prayers, I hope everything goes well and you get the answers your seeking, Good luck!

Sharon, Was the blood drawn before or after infusion? This same thing happened to us at Dr. B's office , they drew blood after 2nd day of infusion and it skews the results. My son who does have a mycoplasma issue was greater than 5 the highest it can be. It also showed Lyme even though no other bloodwork ever turne up Lyme including igenex. His aso was 800 too. So with that said I wouldn't worry too much, I would have bloodwork redone if your worried. Dr. B said he doesn't think ivig would interfere with aso but mycoplasma and Lyme would. I am at Dr. B's now and this time we did blood draw first!