Suzan

Our abx are covered by insurance so it's "only" $5 each but 7 prescriptions times 3 people starts to add up. Abx for us are the least expensive though, it's the supplements that really start to add up. Switching to NSI Synergy 3000 helped me cut out a few pills so that helped my pocket book and my pill box! I search the internet to find the best deals. I agree with only getting what your child will take... dd8 can't swallow pills so we just stick with Threelac for the probiotic even though it's expensive. She likes the taste and takes it w/o a fuss. Since some of the herbs taste so bad, I don't even try with her. This year, I have worked it out so I save my tax refund and use that to pay all our medical bills and supplements. I'm hoping it holds out all year so I don't have to add anything to my credit card like I have been doing. Susan

Yes! I totally agree. This makes a huge difference in my tax return. I save recipts for all supplements and at the end of the year get a list of all out of pocket medical, dental and pharmacy payments.

Which NSI Synergy did you order (3000, Daily, etc)? Is your doctor recommending full dose and if so, how much does your dd weigh and how old is she? I'm glad you liked this products ingredients too. I'm not sure on the dose for my dd who is 9.5 and 85lbs so interested in what your doc is recommending. Thanks! Susan

Check out these: http://www.vitacost.com/NSI-Synergy-3000-Multi-Vitamin-version-11-180-Tablets?csrc=PPCADW-NSI_Synergy_3000_Multi_Vitamin&refcd=GO403437s_NSI_Synergy_3000_MultiHXVitamin&tsacr=GO6784068971 NSI has a few different multi vitamins. I take this one and it's 6 vitamins a day but it takes the place of other things I was taking too. We also get the NSI Basic Multi and that's what I give dd9, 1 tablet. I hope it gives her enough. I don't know if I can give her the full dose. I'm going to ask our doc next week. Susan

My UHC paid for 80% of ours. Good luck!

Lab Corp does it for us. You have to have a doctor sign the request for Igenex to process it. We used our chiropractor since I didn't have a local MD here who would sign at the time. Lab Corp did the draw and spun the blood, I put everything into the fedex package and mailed it off. It was stressful the first time, making sure you did everything right, but it was not actually that hard. Susan

Interesting, we have not had any trouble with our tummies but I will check into the tindemax for us this week, Susan

Anyone else having trouble getting their flagyl refilled? My pharmacy says they can't get it and do I want to ask my doc for something else. Luckily I see my new LLMD next week. Should I request any other cyst buster in it's place? I will need to get something new for the girls too if we can't get flagyl. Susan

Wow! This is really amazing! You have done so well. I am so happy you are feeling so much better! I didn't realize you had come so far. My cd57 is 30 too so that makes me happy too to hope that I do so well and this time next year I may be thinking of coming off the abx! I've been looking at the byron white products too and they seem really good. I'm on too much right now and waiting to see what my new LLMD will want me on next week but I imagine I will try them sooner or later. Susan

This link is to an article with Dr. Corson's evaluation and management of tick born illnesses.... It specifically mentions hemangioma birthmarks and is a really great article. http://www.publichealthalert.org/pdf/2009_10.pdf

I know, it's is a strange comparison of our story and yours and all mixed up with lyme. You know, the presentation from Ann Corson (is that her name?), about pediatric lyme, maybe that would be helpful for Wilma. That is the article that made me start to see the lyme connection with my son and the girls early life. Do you know where to find that? Susan

Our LLMD told me about the relationship between Bartonella and vascular lesions. I have not seen anything in writing about it though. Tried to do some searching about it tonight and I see some articles but I can't get any open for some reason. We don't have huge indicators of co-infections but my headaches and also my VEGF results, along with dd's hemangiomas was leading her to watch us for Bartonella. Susan

My dd8 had a hemangomia on her forehead and back that I am hearing could be a sign of a coinfection. All my children were premature, they all had issues with jaundice and my son died from what I believe now were lyme related complications. Other than that, my girls started showing signs of something wrong around age 1. Prior to age 1 they showed signs of food intolerances (specifically dairy). Susan PS... not sure if the premature/jaunice could have been lyme related but I'm wondering now....

Herxing has been bareable for us, for the most part. Our LLMD has us start everything slowly. We don't start out with the full dose for zithromax or paquinil or questran and work up slowly. I don't know what meds your on, I hope you come share with us what your protocol will be. For herxing, we LOVE the heating pad and our FAR Infrared Sauna. The heat really helps. Also, motrin and benadryl, epsom salt baths and plenty of rest. Most of my herxing only lasts a few days although my treatment brought out a buzzing/vibrating in my shoulder blade that rarely goes away. I have a 504 plan for my girls but I don't think it will be useful for you. It just gives them accomodations for homework and testing and being out sick. I am very excited for you to start your treatment. Hang in there and know that things will get better! Susan

dd9 just got over something, was not the flu but it was a virus of some sort and she was set back for about 2 weeks. I would think that the increase in crying you see could be from the flu. My dd also reacted to tamiflu and acted really whonky while she was on it, but her symptoms stopped as soon as the dose was over (that was 2 years ago when we all got the flu). Could it also be a reaction to lyme die off? How is he doing today? I know it's still early in the day.... Susan

I will, mine is coming in the mail too. I'm going to give it a try before the kiddos too. I'll even treat our dog if it seems OK. My mom is going to start it as well. She already had it in her cabinet. Susan

Fixit and MichaelTampa, Very interesting stuff, especially since my old LLMD is wondering about bartonella for me. Are quinolones the only abx treatment for bartonella? susan

We are taking flagyl for cyst busting. Our LLMD started us on 2pills, 2days but only once a month and I have moved to 2 pills, 2 days a week. My dd9 is still on 2 pills, 2 days once a month. My dd8 is on 2 pills, 1 day every 1st and 3rd sunday. It's crazy to keep track of! We all get stiff necks from herxing too. Susan

I have an appt with my new LLMD next week. It's another big $$$ appt to get established. I hope I like her. She is only 2.5 hours away which is great. This morning my arms started feeling funny, like they had pins and needles and then they got all squiggly feeling inside and felt like I might become paralyzed and it spread to my back and neck and I thought I was going to pass out. I lay down for a while on the heating pad and it finally passed. Now I have pins and needles in my legs and arms but it's not that squiggly feeling and it's not intense. I started taking Cats Claw last week, just one pill a day to ease into it. Could this be a herx from that? I also started my period (sorry guys) 1 week early which is hugely unusual for me. Wondering what that is all about too. Thoughts or stories? Feeling nervous about the cats claw. Susan

Hugs to you! Do you have a sauna yet? That could help you too. I hope you feel better today. Susan

I am fasinated by Diatomaceous Earth since I read about it the natural healings post (I think it was that one). It seems like it would be a good supplement for lyme patients for the detox qualities but I don't see much out there in the way of people taking it. I read that it helps lowers your cholestrol and that is what the bile binder does that I take. It actually seems to do exactly what the bile binder does and more. It seems safe enough to give it a try. I never thought we have parasites but I guess you wouldn't necessarily know and I have wondered about heavy metals which this seems to help with too. I imagine you could feel pretty bad in the beginning by herxing or detoxing. Anyone else taking it or from those who posted in the other post, any more information that could be provided here? Susan

I'm so glad you are on a new path that will help your dd!!

My dd9 does not have tics but her OCD is often triggered by whether or not she thinks I'm mad at her or if things are too loud or too messy. This has already gotten a lot better with lyme treatment. When she gets sick with a cold or other virus, things will ramp up and she will start to get triggered again but the last time, it calmed back down about a week after. If the symptom is caused by lyme, I believe it will go away. Our LLMD believes that pandas and lyme can coexist and that treatment of pandas may be necessary after treatment for lyme. I am hoping all symptoms will be gone with lyme treatment and I think we are going in that direction, but we may not know until they get strep again. Susan

Thought about whether to reply since my info won't help what you are looking for but maybe it will be interesting My girls paternal genes are from an anonymous donor and I am a single mother. The medical profile does not show anything significant that might indicate the donor had lyme prior to conception and he was not around to get it later (lucky him ). Susan

Yes, I believe they were both born with lyme as I have been diagnosed with lyme too. Both my girls got strep early 12-16 months and had ear, sinus, chest infections one right after the other. Sensory processing diagnosed around ages 3 and 4. Lots of weird symptoms and hard times until our diagnosis of pandas at ages 7 and 8 and now we have discovered lyme at ages 8 and 9. I don't know what is from pandas or from lyme. My hope is that treating the lyme will treat the pandas. Susan