Hopeny

LLM with my DD ever since she has been on all of these abx/treatment she has had some difficulty falling asleep, previously was a champ. I started to give her Vitamin D earleir in the day as it seems to make her a bit hyper. I have wondered if the probiotics have some type of stimulatory action as I give them right before bed. I have been using melatonin this week frankly for my own good and because I want her to get a good nights rest. I know Lyme causes insomnia but its not that as once she is asleep it is fine. I suspect someting in our treatment regimine but I don't know what.

An accupuncturist I saw used propolis for her kids but said anytime it was strep she would use antibiotics. My DD has PANDAS/Lyme/Myco, I am using herbal anti-microbials in addition to Rifampin & Zith and hope to switch to 100% herbals ovber the summer. I am using Samento from Nutramedix and am looking at adding either Cumanda or Banderol. The Samento seems to have helped but I have not tried it without the abx yet.

http://www.nytimes.com/2013/03/10/magazine/can-a-radical-new-treatment-save-children-with-severe-allergies.html?smid=fb-share&_r=0 DD does not have allergies but does have food sensitivites, we are using allergy drops which sound similar to what was described in this article. DD is so much better and it is hard to know what is working and if this is helping but thought I would share

I'm just posting this strange experience after a dental visit, which convinced me more than I was before that i need to make sure my kids have a dose of abx before any dental cleaning or work. I had a regular cleaning yesterday, fairly short and nothing major at all, I am a little bit under the weather. A couple of hours later my gums were in massive pain, I started having neck pain and had a major headache. I was taking high doses of advil all day and it was not working at all. I was starting to feel like I needed to call the dentist for a painkiller when it dawned on me that maybe it was some type of bacterial reaction, it did sort of feel like the kind of hurt when a cut gets infected. So I took augmentin I had leftover from an old prescription and about 1.5 hours later, all the pain was totally gone/stayed gone. I'm not sure what to make of it but really seems some type of infection and not soreness or that should have stayed.

Not to keep plugging Dr O', (and I have no personal relationship to her), but she does treat PANDAS, can do the correct Lyme tests and could definitely get you started before Sept The visit is around $600 and she does some tests that are out of network too. She takes credit cards if that helps. My daughter has gone from 70% improvement with antibiotics to about 95% with Dr. O'Hara. Last year at this time DD was begging to die, mostly in bed, and one day told me she was afraid that her clothing was going to hurt her. We made the mistake of going to Disney thinking it would help and we had to wheel her around in the stoller with my 2 year old at the time, she was 8. The psychiatrist told us she had to be watched constantly. At Disney I told her I want to make your dreams come true, tell me your dreams, the answer was my dream is to die. She started to wet the bed. Missed 22 days of school in the second semester. Walked with a cane. I was afraid she would hurt my little one. The school psychologist whom she had known for three years walked into the classroom and she didn't know who she was. When she could make it to school I got a call from the nurse almost every day. I'm sharing this with you because things have only gotten better with the right treatment and doctors.

I found this in regards to Lyme, it is just one of the things that should be evalauated for. http://radiology.rsna.org/content/253/1/167.full.pdf Methods: Institutional review board approval was obtained and HIPAA compliance was followed. This study retrospectively reviewed the MR imaging findings of all patients seen from 1993 to 2007 in whom neuro-Lyme disease was suspected and who were referred for MR imaging of the brain for the evaluation of neurologic symptoms. Results: Of 392 patients suspected of having neuro-Lyme disease, 66 patients proved to have the disease on the basis of clinical criteria, serologic results, and response to treatment. Seven of these 66 patients showed foci of T2 prolongation in the cerebral white matter, one had an enhancing lesion with edema, and three demonstrated nerve-root or meningeal enhancement. Of the seven patients with foci of T2 prolongation in the white matter, three were an age at which white matter findings due to small-vessel disease are common. Conclusion: In cases of nerve-root or meningeal enhancement, Lyme disease should be considered in the differential diagnosis in the proper clinical setting. RSNA, 2009

The winds of change are blowing, Virgina first and now MA. I really applaud that they are also looking at upstream solutions to eradicate ticks. I don't want any other mother or child to ever go through this suffering so needlessly!

Thanks, DD has a colgate pulsed one (I was cheap) but she barely turns it on. I will look into getting a better one... Dd's major ehrlicia symptoms as best as I can figure from the rest were respiratory - coughing, infection and red bumps.

Our integrative MD talked to me about CoQ10 for mitochondrial disease. DD tested negative so we have not pursued, and I know zero about it, but wondering if that could be at work here? She said she finds mitochondrial disease commonly at the route of PANDAS infections. Also I know that lesions can be found with chronic Lyme, but again I know little detail about this - DD had an MRI and it was thankfully negative so I never explored anymore about it. I am sure if you google brain lesions/Lyme you would get some information on that.

Tomorrow will be better I think you deserve a nice glass of wine tonight

5 days will not do any dental harm. a longer course might, but the more I read on this topic the less it seemed a concern. Hubs and I decided if there is lasting damage that can't get bleached out we will get her caps. We decided we were willing to take the risk with the teeth. She has had some teeth come in since taking and I do not see any discoloration but I can't be certain until they all come in. Her teeth were very yellow I guess from all of these meds and dyes, she has been using Crest whitening toothpaste for about 6 weeks and now they look like regular kid's teeth. DD just turned 9.

My DD (Lyme& co, PANDAS, MycoP)has one copy of 677T and I had her on 5 MCG of MTHF, her OCD started to come back, compulsions and rages. Bad ones. After reading LLM post I switched it to every other day, and less than 1 MG as best I can approximate. All that stuff went away almost overnight. kid back. Sorry you are going through this. I would definitely recommend trying to take out the methhlyfolate. If Lyme is possibly in the picture, i would try Burbur 5 drops in water up to 4x per day (can order from Nutramedix) I find it helps a lot with rages. I give DD 5 drops per day on a preventative basis and if I see her upset I give Burbur or both Burbur and Parsley (also nutramedix). This seems to work really well. Good luck

In DD's case she had ehrilicia symptoms following what I now know was the Lyme onset, including severe respitory (sp??) issues - worst moment was she woke up at 5 am one day gasping for air, couldn't breath. Really terrifies me to know now what caused that, and how serious it could have been. I don't really trust any IGG/IGM stuff when it comes to Lyme & co. so we did go with 65 days total of Doxy for that. If i recall correctly DD was IGM for one and IGG for the other, maybe IGM + for ananplasmosis. I have found very little information on it generally and few even on the Lyme boards who have much info. A few of the moms on here have experience with it. My view is to treat Ehrlicia no matter what, 30 days seems to knock it out, rather than take the risk. If you are not that compfortable with 30 days the ID doc first gave a 5 day course.

Fixit I have not seen the video, however I have read other moms post that GF/CF helped with joint pain. In DD's case, the joint pain was single sided, eg left hip, right knee and transient so it was a pretty big flag that it was caused by Lyme. Also motrin did not help at all and it was excruciating pain, she actually cried one night begging me "mommy it hurts so much, please help me" . Our LLMD preses her joints at every visit and I remember one visit where every spot was tender. It also came on with the initial Lyme presentation, she never complained of pain before that. ABX did cause a herx with her, every time we switched she would develop severe pain. Interstingly she also had terrible pain after a day in the ocean, I think it just drained so much crap out of her that she herxed. It would make sense to me that Gluten sensitivity could cause inflammation and therefore pain, but I would suspect that would be bilateral and more achy. I am sure that all these other things can cause it too (Lyme is notorious for causing leaky gut) DD has elevated ASO and Myco too, but the single sided transient presentation, timing and herxing gives me a fair degree of confidence that it is from Lyme. We do not do gluten free, mainly because its just feels overwhelming for me, but I do think that would be optimal. My opinion, is that you have to address all of the infections to get fully well, mind, body and soul too. I also think, after doing so much research and reading so many accounts, that there are tens of thousands of undiagnosed Lyme cases, expecially those with arthritic symptoms, chronic fatigue and fibromyalgia - Lyme is so tricky to diagnose, and combined with what seems to be some type of coverup, and so few doctors capable of assesing it properly, that it really goes undectected making people really sick. Knee pain is one of the most common Lyme symptoms (esp single sided) so when I hear someone with knee pain my first thought is Lyme. There are of course probably hundreds of other causes, but if someone does not get well despite treatment Lyme definitely bears consideration.

I would get him on doxy ASAP. Not to alarm you but ehrlicia has a mortality rate associated with it if untreated. Fortunately it seems to be well treated with 30 days of doxy.

Maybe you can lower vit d or try alternate days?

My mom has high aso and myco (curiously same levels as dd) we have been unable to lower dd's levels at last bloodwork after 8 mos of treatment . Dr B said my mother should be treated with at least 30 days of biaxin and then retested. Please don't blame yourself, you caught it and are doing something. If your dr is flexible perhaps you could ask for 30 days and retest

Not to overdo the Lyme point but knee issues starting as a kid sounds like Lyme should be evaluated, a rheumatologist may or may not use the right test (the one I took DD to was horrid) . Dd (lyme, pandas, myco etc) has been helped by these supps in regards to joint pain: enhansa, quercetin, fish oil and vitamin c. It is not an overnight cure but it really does help. Dr B also told me myco can cause joint pain. Dd had some improvement in her joint pain on abx but it came back. The supplements seem to really work well although it takes a couple of months and patience good luck

My kids have a genetic immune problem, germs make them sick. My older daughter was exposed to TONS of germs in preschool and in NYC and developed asthma. One theory does not fit all even if its published in a book.

For us thinking about all the other stuff in soil, fifth disease, parasites, viruses from animal urine, I'll pass. My kids have immune problems, I plan to keep them out of lakes and underexposed to animal excretement as long as possible. I tried the exposure thing/not being a germaphobe and my kids are incredibly sick now. It's not one size fits all.

Dr B, IMO, is a brilliant immunologist. He has given me great insights for my pans and non pans kids. I find his knowledge of antibiotics invaluable. Dr. O' is an integrative pediatrician, I count on her for the non antibiotic stuff and guidance on the antibiotics too. She is incredibly knowledgable. I have three core md's for my dd, I share with all what the other is doing. I don't put all my eggs in one basket with any one of them, these are complex conditions and they require a thorough approach. Think of a house that has storm damage. A general contractor may do done simple stuff but if you have to rewire the electric panel you would probably bring in an electrician. Your contractor would bring in someone specific to lay tile etc. every specialist will contribute something to you and your child's condition

I second the Dr O'Hara/Dr B suggestion. They are both phenomenal and will add different things.Sorry to tell you this but I took out 401K loans last year to pay for it all and DD is improving, its all worth it. There is no gentle way to say this and I don't mean to sound harsh but it is good to put a financial plan in place for treatment. Last year I think all in was probably $15k or so for us, including meds, supplements, psychiatrist, psychologist and all of my high deductible co-pays (wow what a bad year to choose that plan!!!!). With Dr. O', my insurance reimbursed me about 25% of the initial consult. She is worth every penny. Dr. B. takes my insurance. We also have a lyme doctor who is very pricey too. Many doctors do not take insurance because they spend lots of time with you and would have to battle insurance for reimbursment. First consult with Dr. O I think was 1.5 hours no interuptions, her full attention, and she actually read DD's history and lab work before the visit. My hope is that this investment will help my DD live a better, happier life...There is sticker shock in the beginning so once I accepted that is the way it is it really enabled me to find the best care that we could manage, even though it has meant many sacrifices and a lot of flack I take from my husband.

Thank you for your post. I have not dared dream of a Lyme free life. We are at the beginning of year 2 with treatment. Recently I began to have hope that I can switch DD to an all natural routine without abx, or minimal ones, at the end of the summer if things keep going the way they are, I did give thought to will she have to stay on the supplements for the rest of her life?? It's good to know the possibility for complete healing is out there.

There are two schools of thought, one is not to feed the Lyme and the other is that the body needs it to heal. The same goes for Magnesium. In our case I waited about six months of straight antibiotics before doing any supplements, and Vitamin D had a huge amazing impact. I can't say if waiting was the right approach but I have been very happy using Vitamin D3, has helped DD's mood improve dramatically. Now I only give it every other day. 5,000 iu seems awfully high to me. Personally I would start lower and work up maybe to 1,000 iu. I started at 400 MCG. My DD is 9/65 pounds and I give 1,000 iu every other day. She started I think with a level maybe around 30 and at last test it was I think at 50. If I give it every day now she gets anxious.