laure

Depending on our whereabouts she was anywhere from 60 percent to 90 percent on any given day. Since the surgery we have seen a steady improvement of mood and a lack of mood swings and temper flares- stuff we were unclear of whether it was teenage stuff or Lyme or what.

Our daughter had tonsils out 3 weeks ago. No regrets, she is doing wonderfully! She is positive for lyme and babesia, but many PANDAS symptoms, most notably OCD, which has gone into complete remission 3 times, followed by relapses. Currently she is 90% - 95% most of the time. So interesting how her new ENT put things. Her tonsils looked perfect while still intact, which he says is suspect for someone who has had high anti DNaseB titers for 4 years now. "Means they are not doing their job." After removal he said the underside of her tonsils, which couldn't be seen until after surgery, was quite pitted and filled with white matter. My advice is to stay ahead of the pain right from the get go. Even in the middle of the night. Tylenol, not advil, don't want to induce bleeding, which did happen the one time my husband gave motrin. Liquid tylenol was all she could do, every 4 hours. If you can get painkiller in his central line, that might be the best approach. She is 126 pounds, we did 3 - 4 tblsps every 4 hours. Sometimes sooner. She could only eat ice cream, popsicles, sherbet, yogurt, jello, applesauce - cold, soft stuff - for first 5 days. After that soup, but the temperature bothered her. She did lose 5 pounds, and she is a huge eater normally, so you may struggle there. Some ideas for non-sweet stuff: cold soups, like pureed squash soup, borscht, etc. Once he can tolerate heat, mashed potatoes, noodle soups, well-cooked pasta, eggs. We did do milk shakes occasionally. A lot of times I just had to jump-start the hunger with something normally off-limits, and then she would get past the pain to take in more. My daughter is severely hypo-glycemic, so going more than 3 hours without calories is very bad. Good luck!

Thinking of you, remembering the fun time the girls had together during IVIG...many prayers from us for you all!

My Dd's doctor wrote a letter in 5 minutes - in it he recommended extra time and reduced work load as needed. She has a 504 - best thing we ever did for her. The school has been sympathetic and accommodating beyond our hopes. They allowed her to study math independently, arrive late every day without penalty, and most of her teachers put all her work online. When she needs to, all she does is remind her teachers that she has a 504 and they back right down. Her 504 is for OCD and anxiety caused by lyme. Her OCD causes her to re-read things and sometimes get things perfect, like filling in circles completely, etc. Amazing that everyone at our public school accepted that as a diagnosis. As a side note for anyone wondering, I was very hesitant to label my daughter with a 504, but I came to understand that a 504 plan can be for a kid with a peanut allergy, asthma, or anything that might prohibit their complete participation in school either occasionally or every day. She has been able to move ahead two grades in math because of the 504. On the flip side, she only finishes reading about 4 books a year. So it is a blessing for us.

In our case, nothing was working. If you read Joe Burrascano's guide to treating lyme disease, he states several times that in cases of later stage lyme that present primarily with neuro-psychiatric symptoms, IV antibiotics are the most effective treatment.

Infection risks (low), insurance issues, Dr. liability concerns. That said, they helped my DD tremendously. I would do it again in a heartbeat.

Hi DebCap, I feel your pain, and I can tell you that many of us have been there. You will find a lot of great support and also knowledgeable folks on this forum. Indeed, these folks saved my daughter's life. I spent hours a day here learning, grieving, picking myself back up, and moving on. Your daughter can and will get better, even though it may seem hard to believe now. Stay strong, hugs your way! I also live in NY, I sent you a PM.

The same argument is made with regard to policies for antibiotic use - that as a society we are using too liberally and the effectiveness is decreased in a dangerous way. On the other hand, when it is YOUR child who is suffering and really needs long-term antibiotics to get well, you feel differently. What may be good for the population as a whole may be deadly for a loved one - but it is a matter of numbers from the medical establishment's point of view. I have had heated argurments even with family members over this. Personally I will never regret doing anything we did, no matter how borderline, since those actions saved our child.

Definitely 2009. My Dd had the H1N1 flu along with me, then I stupidly vaccinated for i in Jan 2010 at advice of doctor. PANS began in about 6 weeks later with huge PANDAS exploaion in July. I guess I am kind of thankful though, because we would have taken so much longer to get lyme diagnosis.

Our doctor has written orders that my daughter can never get another vaccine of any type. Or at least until her immune system is 100%. He feels the risks for vaccinating those with autoimmune diseases far outweigh the risk of them contracting the illness on their own.

hey Nancy, We had the exact same problem. Some other lyme moms I know steered me towards checking eyesight, but not the 20/20 kind - we went to a specialist and my daughter was found to have "convergence insufficiency", which is quite common and especially in lyme kids. It is correctable too, with special glasses and other exercises and light therapy, etc. I believe the cause is neurological in nature, but the symptoms are a child who is not enjoying reading, constantly re-reading, reading slowly, etc. The words jump around on the page, or go in and out of focus. Most kids are so used to it that they don't even know they have it. Check it out online, there is a lot of info.

Thanks for that comment Hopeny, I have forwarded this on to John. He is new to this forum, but I am hoping he will respond. I know his intentions are good, and obviously, having suffered for over a decade, I doubt in the 30 days and done category!

Please read this eloquent young man's story - he was a lacrosse player at Colgate, has suffered with lyme disease for most of his life. He is working to raise awareness, generate funds for TBD, and learn from your stories; he plans on making a documentary at the end of his ride across the country. I graduated from Colgate University in May, 2012, with a degree in English Literature, and having completed college, I wanted to embark on a journey across America that would both bring attention to Lyme and all tick-borne diseases (TBDs) on a national scale and allow me to connect with fellow sufferers on a deeply personal level. Lyme disease is an illness that I am strongly personally and emotionally tied to: I, both of my parents, my younger sister, and, as of just a few weeks ago, my aunt, have all suffered from this pernicious and seriously overlooked national health epidemic. I have to admit, though, in the spirit of full disclosure, that I didn't pursue my vision right away; instead, opting to do something more practical and secure, and less close to me, at first. But I couldn't shake this idea, and this disease, which had ravaged my body for years, followed me wherever I went and made itself known in the people I love most. In December 2012, I decided I would seize my good health and bike across the country, starting in August 2013, to raise awareness about all TBDs and to generate funding for new research. Since then, this idea has evolved into a grassroots cross-country bike riding campaign called Bite Back for a Cure. I've partnered with the Tick-Borne Disease Alliance (TBDA), a national TBD advocacy organization committed to raising awareness about TBDs, generating funding for new research, and uniting the nation in this fight. A very important piece of the campaign is that, as I make my way across the country I'll be meeting, interviewing, and staying with fellow TBD sufferers. TBDs are illnesses of great controversies and divisions; listening to and sharing stories across the country, I think, is a way to find resonance and to create a sense of national community. I'm hoping that in listening to sufferers from a whole range of geographic, economic, and cultural backgrounds we can learn more about what these diseases are and what they mean to the people who suffer from them. These patient stories, in my view, are some of the most powerful instruments of change. The success of the campaign depends almost entirely on the support I receive from the people who get involved and the number of people who participate. Your involvement and feedback is the fuel and meaning of this journey. I'm also looking for patients to meet and stay with as I make my way across the country, so if you or someone you know has a story to share and/or a couch I can crash on, please let me know! Contact: john.b.donnally@gmail.com

Yes, it is true that Lariam can be very dangerous. However, it is also highly effective, which is why it is prescribed by some doctors. My daughter was on one month of it at the tail end of her 3 year treatment which included 7 months of IV abx and 2 years of mepron/malarone. Although the last 2 weeks of that month were very scary, about a week after conclusion, all of her symptoms were gone. She has been OCD free and off all antibiotics for 3 months now. Life is normal again, finally. So personally I feel, under a doctor's close supervision, it can be a life-saving drug. But again, very close supervision is needed by both the parents and doctor.

JoyBop, Homeopathic is much different than allopathic or ART. There is a book called "Impossible Cure" that describes homeopathy in detail. Based on that your doctor might have been very good, just not for you, or not for you at the time. If insurance covered it I would love to incorporate it into our mix. Our LLMD respects homeopathy, but it would not be his first choice for Lyme and Co-infection treatment - but he comes from an infectious disease background. Still, he gave us the name of one should we ever want to go that way. My dd is healthy now so we are happy with the choices we made. ART is very different and practiced differently by different doctors from what I understand. Our ART doc is also an MD. Gives me comfort.

JoyBop, That sounds like what a homeopath would do - was your Dr. a homeopath working with the "Law of Similars?"

T.Anna, keep fighting the good fight! We are fingers crossed and waiting longer (this time) to shout from the roof tops. I can offer another perspective, since our DD 12's healing has been all or nothing throughout this 3 years of (mostly) pure . First PANDAS diagnosis, she came almost all the way back with abx combo to 90-95% which lasted 6 weeks. Then lyme diagnosis caused doc to add tindamax, which she was not ready for, and set her back again to zero function. Second lyme doc treated for babesia and again she came all the way back to 90-95% this time for 5 months, then again when tindamax was added fell into a deep dark hole even farther than before. Now, after 8 months of IV abx and really intense babesia treatment, along with heavy metal chelation and west nile virus treatment (who knew?!), and even daily tindamax this time, she suddenly, miraculously bounced back to near 100% in a matter of days. During this time we did go to USF Rothman center for treatment, and as professional as those docs are, (and they were excellent), they could not help her because she would not cooperate, and they recommended sending her to a residential facility. We learned a lot there, but I don't know if she got much out of it other than a lot of tears. So our take-away lesson was that, for my daughter, the right medication at the right time in the right order has been everything - the difference between non-functional and 100%. And she would flip the switch in a matter of hours/days. I can relate to so many of the stories on here about hour-long showers involving 10 (not 9) bottles of body wash each shower, hair that wasn't brushed in weeks, the same outfit every day, unwashed, even issues with eating food if it touched the outside of her mouth or if I prepared it. We really lost her for awhile, she wasted away physically, stopped going to school, couldn't play with friends, and we watched helplessly. I could not hug her for almost the entire 3 years. In November '12 she was sitting on a couch in pajamas all day and could not move from that spot other than to go to the bathroom or bed. Last week she went on a 3 day school field trip to Boston, is a top student, and has playdates every day after school, and plays every and all sports. She is physically affectionate, helps around the house, eats everything in sight, and is no longer oppositional other than normal pre-teen youngest child stuff. We did not see the light at the end of the tunnel, literally until we were there. And I am reasonably sure we still have a few bumps left, but hopefully minor ones. We have 2 very different and excellent doctors, and follow both regimes. Folks on the lyme forum provided amazing support and intelligence. Hang in there, it is possible to cure this!

Tried to PM you but maybe your box is full?

This is the doctor who cured Susannah Cahalan, author of "Brain on Fire". An excellent read.

Hi Amy, I know we have followed similar paths over the last few years, and live only a little over an hour from eachother. My dd 12 did test positive for lyme via Igenex, (not initially, but after treating for PANS for 4 months back in 2010). If you have not done that, I would urge you to. My daughter's constant PANDAS symptoms, OCD, and recurrent strep were helped by aggressive lyme treatment. Her doctors were PANS literate as well. Maybe you have already tested, so I apologize in advance for being too lazy to read back through your history Good luck with the dance recital! Laura

Hey, can you PM me her name? I am coming up pretty blank, and unsure about true qualifications, etc.

Unfortunately he just told me to research it. But some folks who have PM'd me have had same idea/suggestions. It is similar to what is used with cigarette smoking - helps the brain to promote healing action in the body.

LLMD "thinking outside the box" suggested looking into medical hypnosis. Not what it sounds - from what I have quickly researched, it can cause a shift in the brain to adjust healing, ie: reducing inflammation. It is supposed to work especially for people who resist other coping strategies. (CBT etc.) For the record, this reknowned LLMD is not accustomed to patients with OCD (! I thought many lyme kids had OCD !) ) Dd12 still blood testing for high lead and West Nile, and ART testing (through a different doc) for babesia.

Actually the school is in CT, just across the NY border from Poughkeepsie, both lyme endemic areas. The school gives students a good deal of information on lyme because of where they are located, and also treats quickly and thoroughly for any tick bite, regardless of whether a rash is present. So it would surprise me if the family did not have awareness of TBI, at least here in the states.

Sad story, our older daughter's school is defendant. We have spent many wonderful days at this school, amazing place, fantastic teachers. I am curious about what others think about this. Obviously the lyme awareness is a good thing. http://news.yahoo.com/woman-contracted-encephalitis-school-trip-awarded-41-7m-175705335--abc-news-topstories.html