Suzan

My dd when she was first tested by Igenex had negative test results. Her IgM had only band 41 positive and IgG results were below. Based on her symptoms and history (and a mom and sister with positive Igenex testting) she was treated. 3 months later we did another Igenex test and her test had become positive. Her primary symptoms were anxiety and fear, just right OCD, explosive emotions and limb pain. IgG **31 IND **34 IND **41+ HUGS! Susan

Wow, great appointment. I agree that it is all overwhelming. Regarding the KPU, my LLMD didn't know much about it initially either but did the resarch and agreed to treat. She was amazed at the improvement in my dd with her treatment. So hopefully your LLMD will do the same! Since my girls have congential lyme, I tend to think the lyme causes PANS/PANDAS but either way there sure is a connection. Good luck with your treatment and I hope you have smooth road to recovery! Susan

Yes, it's a great book. I loaned it to my Mom so she could learn more about what we are up against. My daughter is turning 11 and she wants to read it next. Susan

My dd9's primary symptom for lyme/pandas is food restriction. I could always tell when she had strep and before our lyme treatment I was looking up whether a 6 yr old could have Failure to Thrive. She only weighed 30 lbs and I thought she was dying. She would say that nothing tasted good and nothing sounded good to eat. She would cry at the table because she couldn't eat, she just didn't seem like she could tolorate the taste and didn't know what to eat. She would get stuck on one thing and eat it every meal until she would no longer eat it. Once this happens it's rare that she will want to eat it again. I fed her carnation instant breakfast exclusively for a long time and for a long time she'd eat sauted shrimp too. There was no rhyme or reason to it, she'd get a taste for something and eat only that. It was super scary when she couldn't figure out what it was that she would eat. It helped her if she came up with what to eat on her own and help me cook it too. She did have fear of choking so she would chew a lot and eat very slowly. She wouldn't eat certain foods because she thought she would choke on them, especially things that required a lot of chewing like steak. She would often chew and chew and could not swallow it and eventually spit it out. Also, offering any foods at breakfast helped, not just breakfast food. Even now that she has a much better appetite, she is prone to eating one thing and prefers dinner food at breakfast. When I see her getting into only eating one thing I ask her to add some variety and she will. In the absence of strep and now that her lyme is basically treated, this does not happen any longer and her favorite thing to do it eat. She is almost 10 yrs old now and weighs 60 lbs. She is very little for her age but I'm so happy about those 30 lbs gained in the past 4 years. HUGS! Susan

I think it sounds like it could help to move some things for you that would help the other treatments work better. before we saw him we were sort of at a plateau and after things got a lot better and we got off all antibiotics. Although I am worried now we may be at another cross roads, I would not have left this part of the treatment out! Good luck to you! Susan

It helped us tremendously! In working with our wellness doctor, he used the zyto to address allergies and imbalances and to get a personalized supplement protocol. We have been working with him for 9 months or a year and have improved a lot with the additional supplements. He also used great plains organic acid test, heavy metal hair testing, etc. to get a complete picture. Currently we are using zyto now to see what specific viruses/bacteria are still affecting the kids. Our wellness doc needs to learn a little more about what to do now that they are identified as this was a new technology with zyto for him. I hope he can step up and help otherwise we will need to move on to another possibly homeopathic or ND. Susan

I also used IGenex western blot, and LabCorp CD57. My Igenex test was positive Igenex, negative CDC standards. I worked with a lyme doctor and also a chiropractor who does muscle testing and natural treatments. I hope my regular doc will check my cd57 when i go back for a physical. Susan

Hello! I am very sorry you find your daughter (and you!) with lyme. My daughters have congenital lyme as well. We have been treating for 2+ years and they are doing well now although we are not quite done with treatment. We started with 1.5 years of antibiotic (abx) treatment with the three abx approach. This worked well for us to decrease the overall load and symptoms. Then we switched to homeopathic treatment (Deseret Biological Lyme Series which my wellness doctor thinks is the best for lyme). It helped us to get to a better place where the abx could not get us. I don't know what would have happened if we had started with that instead of abx. I know many people are helped with non prescription drugs but I think it depends on the person and how lyme attacks them. I agree with your ND approach and I think that is absolutely necessary when treating lyme. But I would feel more comfortable with some form of lyme treatment whether it's herbal (Burhners Herbs) or homeopathic, etc. I know there are other things that I have not tried that may be good too. Of course if you do go the abx route, your ND will be great in helping to keep the gut in shape since the abx will mess with that. I know others will have great advice and stories for you and hopefully you will find something helpful here! Susan

Hey there, tried to PM you but your mailbox must be full!

Thanks sptc! I am so confused and overwhelmed. If you saw my othe post, dd came down with strep again. I've got to address this problem and I'm thinking my doc may not have the experience with strep although I'll still work with him I'm wanting to look around to be sure I'm getting her the help she needs. Most of what you have here I don't understand so I better PM you and see if you have any other thoughst for us! Susan

DD10 has strep again. She just had it in mid-May when she had both flu and strep at the same time. Good news is after treating her lyme, she is handling the strep so much better. She had (has) increased anxiety and increase in explosive emotions and unreasonable fears but overall she was so much better than the PANDAS days before treating her lyme. But it's obvious she still has a strep problem and I don't want strep to take hold of her again. I need someone who knows how to detox strep and push it from the cells or somehting like that. I guess I need to go read up on strep again and try to get a game plan. I'm thinking about trying homeopathy products for strep. Maybe I need to find a professional homeopathic practitioner. Susan

I think I have had lyme since I was very young. My only known tick bites were when I was a kid (I'm 45 now). I feel fairly confident I had it when I was 18 but I started getting more sick when I was 28. Then, various issues through the years until 2 years ago when I got very sick and diagnosed with lyme. After 2 years of treatment, I'm doing much better. My brain function, which was drastically affected, is about 90% back. The remaining is due to feelings of being overhwelmed, poor name and face recall and forgetting what I was going to say. The fog has lifted! Good luck! Susan Oh yeah, also, most pain is gone but I have to stick to a pretty strict diet of no grains or sugar otherwise the pain returns.

Hi again, I have a friend who's husband and three children all have lyme (as well as herself). It seems that families all being infected is common and I assume they were not all bitten by an infected tick. I know my children started symptoms when they were babies, probably after their first strep infection that they got before the age of 1. They have a strep connection and diagnosed first with sensory processing disorder, then gluten intolerance, then PANDAS, then lyme. I discovered my lyme after getting very sick 2 years ago after a very stressful situation although I was sick for years before that but did not figure out why. We all got diagnosed at the same time once we put it all together with the help of the lyme mom's that went before me here. Susan

I was on it for about 6 months. Before that, I was on amoxicilin, flagyl and zythromax for 1.5 years. I switched out the amox for doxy. I hated the doxy but it really helped a lot. I stopped when I decided to go the natural route and started Desered Biological Lyme series. I did OK stopping but I think the timing was right. What does your LLMD say? Do you see an LLMD? HUGS! Susan

Hello, I believe my daughters got lyme either in utero or through my breastmilk because I was undiagnosed at the time. My son, who did receive some of my breastmilk, passed away when he was a baby from birth defects that I now believe were from lyme. So I believe you can also pass it along in utero. I know LLMD's usually believe lyme can be passed through breastmilk but I think the CDC says otherwise. However, most here will believe LLMD over the CDC! Good luck to you and your children! Susan

Thanks Julie! I will PM you soon after I get my thoughts together. Maybe this weekend. I have some Traumeel too and was trying this out. I'm needing some ibuprofen alternatives as well.

I'm having trouble seeing what the results were in your post. Were IGM positive or IND? Are you going to see an LLMD? I need to remind myself what the bands all indicate.

When our abx stopped giving us any gains, we switched to Deseret Biological Lyme series along with lots of supplements from our wellness doc to balance and detox our bodies and this helped us tremendously. We are not completely well yet but much closer now after that treatment. susan

My younger dd was very impulsive! She could not keep her hands off anyone and would put her feet in your face and hang on you and other things. She was usually good natured about it but she drove people completely crazy. This has mostly resolved now and she is much more appropriate in her actions. She still can't control her mouth. She's constantly talking or making some kind of noise but hates it when other people do that. Susan

Lyme gave my dd racing thoughts but it usually set her off into a fit of rolling around on the floor and pulling at her hair or following me around asking me to make it stop and stuff like that. My other dd was so tired all she could do was watch TV but she didn't have racing thoughts. Susan

I'm looking for homeopathic or other natural treatment for removing virus, bacteria, infections that are not clearing. Stuff like mycoplasma, strep, pneumococcal pneumonia, really a wide range of stuff. Does anyone have any resources or places I can start to try to figure out what we might want to try? My girls test high for a few things and I'd like to try something like the deseret biologicals lyme series, but for other stuff, not lyme. I see they have some interesting products so I'll continue to check into that. I have a zyto printout that gives me tons of data that I don't know how to read. Hoping our natural doc will be able to help but I'm concerned he's not concerned enough about the importance of us clearing this stuff. On a good note, lyme is not anywhere near the top of the list so maybe we are doing good in that arena. I really don't know though. I'm completely confused Thanks, Susan

That was me all last summer! I got burned through the windows of my car too. I had to wear a long sleeve on my left arm and put the rest of the shirt on my left leg while driving. Hat, umbrella and long sleeves all summer to stay out of the sun. Be careful! I took it regardless. It helped me a lot but i was very happy to go off it too. Susan

That sounds a lot like dd9! She was so tiny and would not grow. She's gained 30 lbs since going gluten free/pandas/lyme treatment over the last 3 years and she's finally growing taller too! She's all of a sudden reading great and doing really well in school. She still hates to write but at least she can now. We took the organic acid test that shows many imbalances in her that she's being treated for and she's doing much better. We'll continue those treatments too whether she is done with lyme or not. I just found out our wellness doc has a lyme specific test that he can use with his zyto machine. I'll be trying that for us next month. I'll let you know how it goes. Susan

You are doing a great job and it is a hard job! When I was at my sickest, we ate on paper plates and ordered takeout all the time because I was too sick to cook or do the dishes. I could not fold laundry and the housework went to the very bottom of the list and we are just now digging out from under all that clutter! Hang in there and you will get better over time and things will be much easier again!! Susan

Thanks! I do wonder if dd9 is done with lyme treatment although she'll have to continue all the other supplement support. I don't feel that dd10 is, unless it's the heavy metals that are causing her current symptoms. I don't feel like I'm done with treatment yet. But that said, I don't think our homeopathic treatment would be causing gut issues but of course I don't really know. Maybe the cats claw could be causing issues, I don't know. We are treating her gut with her other treatments and working on her protein digestion, etc. I am trying to keep an open mind though to be sure I don't overlook anything! Thank you! Susan