Hopeny

Regarding Lyme, the testing is unfortunately not extremely reliable. I just saw you are in the UK. There is a lab that seems to be knowledgable in Germany for Lyme which might work. http://www.infectolab.de/index.php?id=22&L=1. (BTW because we must find some humor in all of this I love the name , Infectolab!) I found them on the Igenex website which is the gold standard Lyme lab in the U.S. Many of the standard labs do a pretty poor job so please see if Infectolab is an option, especially in the UK where there may be very little experience with Lyme. Checking for Lyme co-infections is also important, however if costs are a concern you could do the Lyme test first and then do the rest if anything comes up suspicious. Good luck.

ps rowingmom, awesome on the bike ride!!!!! gives me so much hope!!

Thanks Mar, that is interesting regarding the Gluten. This has pretty much all come on with the Lyme diagnosis in December, after a first ocurrence when I now believe DD acquired Lyme in 2010. To you and rowingmom I admire your perseverance with the diet, i have consdiered making these changes but due to numerous excuses - me not being much of a cook at all, me working full time with a horrendous commute and a husband that does not help at all with the kids, cooking etc - it's pretty much all on me. If I knew it would help for sure though I would do in a heart beat. I tried to cut all sugar from my lyme daughter but she has had such a horrendous year I have just seriously not had the heart to take away all sweets. However it is something I should try to figure out a way to manage.

sorry your DD is suffering so much. even though yes I 110% agree it's a very unpleaseant path it sounds like your DD needs a full Lyme eval with a very experienced LLMD which can cause many of the symptoms you describe, we started with Lyme and now find ourselves with Lyme/PANDAS. As far as I know, if someone has Babesia that would likely mean Lyme too. A negative WB or Elisa test for Lyme doesn't mean all that much. On the bright side if it does turn out to be the case, with treatment for both conditions your DD has the best chance for recovery. Babesia also needs very specific treatment. It is impossible with Lyme especially a complex case to self treat in an early stage. Wishing you the best

I empty the culturelle capsules into a cup with milk and DD drinks it no problem, I also do ocassionally with Florastor and even though that has a yeasty smell she does not seem to notice it - even though she catches me if I try to sneak dye free motrin into the milk, she always can tell with that somehow. DD loves the Culturelle kids powder but it only has 1BN cells and our LLMD wants 20BN 2x/day (we only do 1x/day, have found impossible to time with the abx)and she hated the Florastor kids powder.

Thank you, coincidentially I have my heart set on 12 months of abx before I think about IV again. We are into fourth month of aggressive treatment. None of these choices are very attractive, are they I just continue to be thankful I have doctors that I am managing somehow to pay that will treat my daughter and these other children.

Hmm I think I will give it to my mother too. Despite DD's 2 CDC positive tests for Lyme, plus ehrlicia, anaplasmosis and rocky mountain spotted fever, she thinks my daughter is faking it because the symptoms come and go. Yeah 8 year olds normally beg to die. It infuriates me.

Thanks all. DD also has very bad psych symptoms, so all roads lead to Bartonella I read that Lyme can surpress the other infections. The sole pain cropped up after we started aggressive Lyme abx. I am thinking about the Galaxy test but we live/LLMD is in NY, they don't offer it but I can ask a CT doctor to send in. Does A-Bart work on its own or do you need the Rifampin? Our LLMD said he likes to use Doxy/Rifampin for Bart. Since DD tested negative, despite symptoms, and she's 8, we decided to wait a bit but now she seems to have all these foot symptoms and I am starting to worry the psych stuff won't resolve. can't these kids catch a break?!

I just finished this amazing book and wanted to share, it is a medical journalists transcription of her own families unravelling of their massive undiagnosed Lyme disease along with a detailed history of how it was discovered, why the guidelines are so outdated and scientific/medical explanations of how Bb and co-infections work/persist. I found it extremely helpful in terms of understanding this disease, the history etc. It's also very interesting to read and makes you even more appreciate the risks our wonderful LLMD's take every day. I feel better armed in this battle now after reading and wanted to share with others.

My DD8 is in month 4 of treatment for missed (reading back to old bloodwork she has had for 2.5 years) Lyme, a variety of coinfections and PANDAS - she started off with hip arthritis but that went away in 60 days of aggressive abx. Now she is complaining about bad pain on the soles of her feet and knee. She has been tested for bart 3 times, by Igenex and Quest, and all are negative. LLMD said Lyme can also cause foot sole pain although this is also a symptom of Bart. She is on Doxy now but will go back on Augmentin/Biaxin when school starts to manage Strep too. She won't take motrin/claims it doesn't help. I made an appt with an orthopedist to see if he has any ideas. Today I tried Aspercream and heat, after 30 minutes she was able to get out of bed. usually it is not so bad but today was terrible. Usually one knee, today both. I am not keen on Aspercream because of the risk of Reyes syndrome but was pretty desperate today. I gave her a medical holiday no Doxy on Friday, could this be a Herx after all this time????? after 100+ days of treatment? All suggestions welcome please.

As far as I can figure all in we are at about $30k and climbing so far this year for Lyme treatment and associated costs for a missed diagnosis, for $65 I would test the tick . My nephew acquired Lyme from a tick that was not engorged and attached less than 12 hours. That prophylactic one time Doxy does idea is not reliable. I am not sure about the IV meds you wrote about and what they treat but in this case way better to test. If it was on her neck the transmission would be close to the brain, making the possibility even worse.

My DD's results have ranged from CDC positive to CDC negative over 5 months time. Symptoms are actually more important than the tests results which frequently vary, even Igenex. My DD's LLMD told us that if he sees Band 93 with symptoms, then he will treat as that band is the DNA of Bb spirochete. Due to your son's age I would recommend contacting Dr. Charles Ray Jones in Connecticut. You really need an LLMD to make sense of the test, symptoms and bands and treatment.

Christy thank goodness your grandson has you. With your grandson's complex condition I would recommend a consultation with Dr. Charles Ray Jones, he is the most experienced pediatric Lyme specialist in the country. For my daughter we are seeing both a PANDAS doctor and a Lyme specialist, each has a different expertise. You can get a grant to cover some of the Lyme medical expenses at Lymeaid4kids. Dr. Jones is in Connecticut.

My little one had tons of ear infections. We started using Nasonex, apparently it somehow helps dry up the fluid which can remain after the infections clears up. The fluid they say can cause pain too. TPotter what are your thoughts about while we are there having DD see Dr B for asthma? She has mild asthma and rarely has issues, she sees a pulmonologist every three months. Since she is seeing Dr B/Jennifer once a month anyway, seems like it would make sense to have him monitor the asthma issue too.

As I understand it, generally IGG means past infection and IGM is current - this does not apply to Lyme Western Blot which is an imperfect test. It gives some additional information but not much, as part of the whole picture. My DD's test have been all over the place, CDC IGM positive, then negative, them some IGM and some IGG. My LLMD was more concerned with the specific bands, for example my DD has band 93 IND on IGG I think and maybe + on IGM by SUNY and Igenex, and has been on ABX for months. He said Band 93 is proof to him of Lyme, while other bands may not be as indiciative. I now believe she acquired Lyme in 2010, based on symptoms and tests, however she had CDC IGM positive tests by Quest in Jan and March of 2012 - IGM vs IGG doesnt't seem to mean very much for Lyme.

It's a very tough decision but I agree with DCMOM, do your best to manage/plan for whatever comes up. My 3 yr old (not PANDAS/Lyme child) does have an immune issue but I decided to send her to pre-k anyway in September. It is scary because she is totally vulnerable, I considered the options but in the end we will have to tough it out and hope/pray for the best. Have to do what is best for the kid medically, socially, psychologically etc - just like you have to treat all of these aspects to get them well. Good luck.

The House Committee on Foreign Affairs, Subcommittee on Africa, Global Health, & Human Rights will hold a hearing Tuesday, July 17, on "Global Challenges in Diagnosing and Managing Lyme Disease -- Closing Knowledge Gaps." The hearing will be webcast and available live via the Committee website.It will start at 2 pm EDT in Room 2172of Rayburn HouseOffice Building in Washington, DC. The room holds about 150 people and the public is invited to attend. People should arrive 45 minutes early because there are lines for security. Please encourage your legislators to attend or view the hearing. For links and more details, go to http://lymedisease.org/news/lyme_disease_views/global-impact-lyme.html

Lyme symptoms wax and wane, even on the same day. For my DD, I theorize that a strep infection pushed her symptoms to the brink, which fortunately led to bloodwork and finally a diagnosis. Dr. Tom Moorcraft referred to Lyme on his website as the great instigator, once you have it it seems everything else gets out of whack.

I have felt hopeless many times, but then somehow found a way to think of non traditional solutions. I absolutely allow myself time to wallow about it, and then I limit it and make myself move on. I try to think of good times when I was pregnant and when DD was a baby. And to imagine good future times like walking her down the aisle etc. I took out a second loan on my 401K today and a few weeks ago we took a very substantial credit card loan, I really understand. I am not sure how it works by lymeaid4kids does give some help with medical costs for kids. I have a colleague at work whose older child (17) has behavioral and psychiatric issues. She sucessfully sued the school district to pay for psychiatric boarding school (10k per month, wow!), while your situation is different as I understand it the school district is required to provide schooling, so I am wondering if there is another option that could be available to you. I don't know all of the details but perhaps there is some way to explore other schooling options.

Its a very difficult decision but I would keep DD back. In our case I am doing everything to try to reduce pressure on my recently dx'd dd8 so she can focus on healing without distraction. I am seriously even considering moving to a new area in the future. Better to take extreme measures now so they have the best chance to succeed going forward. Good luck

wow 13 years is a really long time - just wondering have you tried different LLMD's? IV abx?

My DD had lots of brain fog, we discovered there is a PANS element to her illness in addition to Lyme. Not sure about racing thoughts but my DD developed OCD and tons of anxiety - this is the PANS elemnent. She sees and LLMD and somoene for PANDAS. We are using Doxy even though she is 8.5. We are going to use it for 1-2 months and then go back on Biaxin/Augmentin. It's really a parental choice.I know many would see it as aggressive in my case due to DD's age but as I understand it is strongest oral against Lyme I made that decision.

I just checked DDs Igenex results. The ** means that it is considered a significant Lyme band by Igenex. I believe the CDC only considers three bands significant for IGM, whereas Igenex considers a larger number of bands important. ** with a blank means negative. Tiffani is 83-93 + ? I couldn't tell if it was 45 positive or 83-93 positive.

My DD has similar obsessive worries before bed when she is having flares. Personally I find talking to my husband about as helpful as talking to our pediatrician, so I just don't even waste my time. He tried to explain DD8's suicidal ideations as "normal". Try to find a trustworthy friend or family member to talk to.

In our case yes. My DD8 has PANDAS, my brother's daughter has PANDAS, my sister's son has tourettes but my sister says he has had since birth and won't get him evaluated. I have had strep way too many times to count, I actually recall my pediatrician telling me maybe 30 years ago that I am one of those people that probably has Strep living in their throat because my swabs were always positive. My husband has full blown textbook OCD (rituals, compulsions, and more - just a nightmare to live with by the way), I will admit I do have contamination issues - tonight I washed my hands at least eight times while barbecuing. My father has OCD, checking rituals, collecting, hoarding. We are figuring my 3 year old out, her strep titer thank goodness is normal however she has a different immune issue and has been showing signs of OCD. My DD has Lyme and my nephew just acquired it from a known bite. My PANDAS niece is being tested for Lyme and I will be surprised if she does not have it. I am wondering if there is a genetic vulnerability to Lyme too.