Suzan

I know I have at least heterozygous a1298c based on my daughter's results. I'm in the oh so long wait to get my 23andme test results back so I don't know the full picture yet but I started taking a low dose of my dd's methylated supplement and I can't tell you how much better I feel. I was about to go on Welbutrin do to serious depression and weight gain but I'm feeling like I'm coming back now.

Hi, Vitamin C will help but in our case not enough. We also use NAC and Milk Thistle as well as saunas and epsom salt baths. Plus, finding out that they have the MTHFR gene mutation that makes detox hard was key in starting to help us.

yowza! Ok, thanks, I'll try to dive into this later tonight. I have ordered the testing for us. Susan

LLM..... dd10 has 2 copies of a1298c dd11 has 1 copy of c677t and 1 copy a1298c Do you have any resources I should be reading to learn more about the two types? 23andme tests soon to be ordered! Susan

Sent you PM with details about your doc...

My daughters never had high ASO or DNASE results even with documented strep and PANDAS symptoms. I think they said it was due to low immune function and they were not producing antibodies?? One dd just came back with her first ever elevated DNASE result but ASO still normal and she does show low immune function. She has lyme and pandas and 2 mthfr gene mutations.

LLM, thank you! Your experience is helpful and I'm very glad to know how this test helped. I was reading up on it yesterday and wondering how that might be different than what we got. I got a script today for dd10 to get the MTHFR test from her neurologist and he ordered additional testing for dd11 for homeocystine and something else but it still sounds like this 23andme test would be beneficial for us. I didn't realize it didn't require a doctor to get the test. Our neurologist is fantastic and I just learned is opening his own practice for autism, pans, etc. so he will be a great compliment to dd11's new LLMD and be able to help dd10 as well which is great since my area is very lacking in this type of support.

My father was a traffic engineer. GOOD LUCK iwth IVIG.

So dd11 has been diagnosed with 2 mutations of MTHFR through her new LLMD. I don't have the lab work in my hand yet so I don't know what the mutations are. LLMD is putting her on the methylated supplement for it. dd10 and I need to be tested now. Has anyone found that your regular doctors will run this test? We have appointments in 2 weeks to find out. But wondering what your experience was and if we should just to to the ones I see on line for $100 - $200? dd10 and I don't have an LLMD at the moment. Thanks, Susan

I believe my children got it through my breastmilk (if not in utero). I got it from a tick bite as a younger person but was not diagnosed until much later when my kids were diagnosed.

My daughter needs to stay on zithromax daily or she continues to get strep. She had strep 6 times last year until she went back on daily 500 mg of zith. I don't know what we are going to do long term about that. But she has congenital lyme too and we go see another LLMD next week. I continue to hope that taking care of the lyme will help her with her strep issue or maybe this new doc can help us with both issues and finally clearing her strep and/or her sensitivity to getting the strep infection. My dd never has a positive rapid but the culture will grow. She also has a sore throat a lot of the time, possibly from allergies and lyme symptoms too. HUGS!

Interesting!! I will look for that as I would like to read it. If I can just get her to a place where she can stand the herx, I really believe this will help. I have not tried the strep frequency yet but that will come at some point!

Update.......The Rife is a powerful tool! For dd10 and I, we can tolorate the herx, we have obvious herxing but it lasts a day or two and it's over until the next treatment every two weeks. I feel confident that this will help get us to another level of healing if we keep it up. I really love this machine. But..,...dd11 herxes so badly with her treatments and for prologned periods of time that I've had to stop until I can get someone who is knowledgable and can help us through it. She must have such high toxic overload or had so much lyme and bartonella bacteria in her that it's too much for her. I am finally able to take her to a lyme specialist in Wash DC which is about a 6 hour drive for us. We go at the end of this month. Susan

If you go to the products page you will see them there in alplha order. I find this stuff very interesting but not sure how the lyme and strep fall into the allergy category. I don't see anything specific to either one of those. Are they implying that pandas would be an allergy to the strep infection?

Lismom, what tests do you do for methylation issues? I know that we did the KPU test which came back normal but we treated my dd10 with high zinc anyway due to overwhelming symptoms and she improved very much. I am working on finding a new doctor and we have one doctor we are working well with now but I'm not sure how much blood work he does and of course, money is a factor if insurance won't pay. Thanks!

Thank you Sheila!

Hi. After 3 years of lyme treatment and running out of money but still having sick kids and still being sick myself, I had heard good things about the Rife machine on some lyme forums. I decided I needed to try some other things for us to get well and think outside the box! We are new in our Rife journey so I can't recommend it too much but I am extremely hopeful. If you ever feel you may be dealing with lyme, I recommend the book Lyme Disease and Rife Machines. Susan

My children had chronic infections since birth, sinus, chest, ear, strep. Turns out they both have congenital lyme and pandas. HUGS and good luck in your journey for answers. Susan

I'll recommend this to my mom who's having issues with arthritis! The link did not work for me but I'll try to google it to get more information. Sounds very cool and right up my alley. dd11 herxed very badly from last weeks treatment so I will be slowing things down a little to ensure she can handle it. dd10 has had some joint pain and increased impulsiveness but she has also been sick so it's hard to tell what is going on with her. I know this will be a long process though so I will try to be patient. Susan

As long as lyme and pandas can be discussed happily together I'm ok with it as well.

Julia, thank you for your support and I sincerely hope your good feelings are right on target!! Edit - meant to ask, what is the Bemer?

My dd11 tests low for Manganese and takes it daily now. Interesting.....

We have our Rife machine and had our first treatment last week. I'm reading Lyme Disease and Rife Machines and I find it very interesting and informative. We will follow the treatment guidelines from that book and recommended by the place we bought the machine. It's slow and steady type treatment. The treatment plan is a treatment one week and the next week and then every two weeks for the duration which could be 1.5 to ?? years. We start at 2 minutes for each frequency (totaling 10 minutes) and eventually work up to 3 minutes. I find the recommendations conservative which I like. But the treatment really packs a herx! I experience almost immediate roving pain, joint pain, fatigue, a feeling of the flu and difficulty thinking. It does not seem to last more than a day or two so far. dd10 has not shown any changes except that today she suddenly took interest in loading and unloading the dishwasher and brushing her teeth All things she has never done willingly. dd11 has emotional liability, roving pain, and overall inability to function reasonably. The book recommends that you remove all abx from treatment if possible to avoid any cysts and bacterial suppression. It warns that you will feel worse before feeling better. It's hard to go there again after all this time on abx. Between the three of us, only dd11 is still on abx because she can't maintain stability without it. She has herxed badly from today's rife session and I can just see the future with her on rife with no abx and it's a scary place to be. I'm going to have her read the book and see if she can get on board with me to possibly go back to where we were 2-3 years ago with our herxing and symptoms while we go through the treatment. I wish there was a guarantee to help with the decision. I may have to keep her on abx for a while and the book has a recommendation for slowly removing abx. I feel confident that abx will not get us where we need to be and we are not where we need to be yet and this is the path that I'm being drawn to now. I would like to come and update on our progress for anyone in the future who may be trying to decide whether to rife or not. Susan

HUGS! We live a "normal" life. My kids go to school, I go to work, we have fun, we have hard times. Just like everyone else. We just have different experiences due to the lyme. Maybe we've been lucky, I don't know, everyone is different in how they respond to lyme. Anyway, I know I responded on your other post, but I thought I'd give you a brief history of what I can recall right now. These are their primary symptoms at various times of their lives. dd#1 (now 11) - history of sensory processing disorder, gluten (and other food) intolerance, pandas (severe reaction to strep), emotionally explosive and unreasonable, anxiety, separation anxiety, chronic infections (sinus, ear, chest, strep), ODC, unusual and intense fears, hearing voices, seeing spots or flashes, floaters, unexplained pain and episodes of being unable to walk, joint pain dd10 (now 10) - history of sensory processing disorder, gluten intolerance, pandas, seizures, impulsive, separation anxiety, chronic infections (ear, sinus, strep), Food ODC, fear of choking, fear of bugs and spiders, fatigue I will say, all of these symptoms are much more managable or gone now after treatment. They were treated with zithromax, amoxicillin, flagyl and various other things for yeast and detox. We are still working on healing. It is a process and does take time. Regarding internet forums and support.... it's true, you can get freaked out and worried and good or bad information. I found that my internet support and information helped me tremendously. I could not have done all I've done without my internet support family. I was able to get sensory processing, pandas and lyme diagnosis for my children (and lyme and parsonage turner syndrome diagnosis for myself) through everything I've learned from my internet friends. Susan

Hello. Congratulations on your beautiful child! I sincerely hope he does not have lyme. I don't have the answers for you but I did want to say a few things in case they are helpful to you too. I was undiagnosed with lyme when I had my children. We were not diagnosed until they were about 7 and 8 years old (3.5 years ago). I could tell that they had issues around 1 years old. In retrospect their symptoms were caused by lyme. We have had a hard road with medical issues. However, we have a life that I would not trade for a life without them. They are wonderful girls, unique, beautiful, funny, intelligent, sensitive, active, creative and very special. I wish they did not have lyme. But we are managing and they are improving and getting better and I know one day they will be better. I am currently learning about the Rife machine and from what I know so far, I wish I had looked into it long ago. But we are just starting our Rife journey so I can't say yet whether I recommend it or not. My main recommendation is to follow your heart and if your mommy instincts are telling you something is wrong, don't listen to the doctors who say he's fine. That's what I did and it took too long for me to figure it out. Knowing that you have lyme at least you know what to look for. I don't know how to not look for something that isn't there though, if he is symptom free and his tests are normal, try if you can to enjoy life and take it easy. It's hard enough without lyme anyway!! Good luck to you and your son and my best wishes to you! Susan