This is interesting to me as my daughter (who is now 14) was diagnosed with lyme and co in 2016 (after nearly a year of symptoms, two hospitalizations, and 2 misdiagnoses -systemic lupus then...
My daughter at age 9 had undiagnosed lyme and co-infections. She got strep and it was the perfect storm- joint swelling, pain, rashes, hives, and many more symptoms (jncluding neuropsychiatric...
Hi, just wondering if anybody got answers as to why they had low ferritin but high iron. My dd13 has a history of lyme and co (babs, bart, ehrlichia, myco) plus PANDAS. She was very sick between ages...
It has been a while since I have posted here as I have found some great facebook groups; however, I am so grateful to this group because it is what led me to the truth about my daughter. She ended up...
I'm so sorry- this sounds horrible. I will pray for you too. I am very worried about my daughter. She's 10 with confirmation of Lyme, co-infections, MARCoNS, and her stool sample results came back...
Blue lyme she has less pain in her legs but continues with random pain, headaches, stomachaches, fatigue and dizziness. She is on home hospital for school but planning to send her back after winter...
I am following this post. My dd10 was re-tested recently for Lyme and co-infections plus other infections and we now know she has a slew of co-infections plus MARCoNS. I have a phone appt with her NP...
So sorry you are going through this. We knew nothing of Lyme when my dd9 became ill. It was horrible and took nearly a year to find out what was wrong only bc I kept searching. She was hospitalized...
Hi Celeste Hi Traveler, thanks for your responses. I do believe her response to amox was a herx (debilitating migratory arthritis, itchy rashes, head to toe, hives everywhere, dermatographia). The...
Hi, it's been a while since I have posted but I have some new questions. First I want to thank this group for answering my questions and encouraging me to seek testing for my now 10-year-old daughter...
Thank you!!...
Hmmm - that is so interesting because these kittens came from a shelter (One of them had an infection and was on antibiotics but it was not specified to be Bartonella) and I suspect my daughter has...
Hi, Just an interesting new experience... I have read about Lyme disease causing allergies to food but I am wondering if there is any mechanism by which it can also cause allergies to animals? My...
Thanks you guys, I have been suspecting bartonella because of some of her issues (and reading about Bart symptoms) but we have not reached the point of testing for it yet. We go back to her LLMD on...
I'm wondering if anybody here has experienced or been diagnosed with Lyme radiculopathy? Or maybe a diagnosis doesn't matter because it's part of neuroborreliosis...I keep trying to find a reason for...
You might want to research the Buhner Protocol: http://buhnerhealinglyme.com/ Our LLMD has my daughter taking Samento and Banderol but we are very new to Lyme and she has only been taking them for a...
That is odd- I joined and they accepted me. One of the members PM'd me to tell me I might get more responses on the PANS/PANDAS/TICK borne illness page (I think it had Lyme in the title too) so I...
Thank you so very much everyone! I will join that Facebook group- Rowing mom- I would love a copy of your notes. I thought I already enabled my email but I will make sure to double check that. I am...
Hi, I have not posted in a while because things seemed to be pretty slow- going. My daughter turned 10 in June right after we got her Igenex test results showing positive bands 18, 31, 41, and 58....
Happyjo: There is a blood test called the Cunningham Panel through Molecura Labs. It's actually a few different tests for specific antibodies I think. I don't think they will dx PANDAS or PANS...
Smcalimni96: The doctor gave us so much information that I was a bit confused about the antibiotics. I think it may be only if the symptoms persist. We see him again in 3 weeks so I can have him...
I can't thank you all enough for your input – it is so helpful! My daughter already has a 504 plan at school because she was misdiagnosed with lupus back in January. The school has been very...
On a good note, she only has a few days left of school and a break for two months of summer so at least we don't have to deal with school as she starts her treatment!...
Thank you both! I was a bit disappointed because I asked the LLMD if we could have him write the diagnosis down and describe how it may affect my daughter at school so we could have a doctor's note...
Saw the LLMD today. Results of Igenex tests: IFA: 40 (equivocal) Western Blot IgM: 18kDa ++ 31kDa ++ 41kDa + 58kDa +++ IgG: 31kDa IND 41kDa ++ 58kDa + Her vitamin D was insufficient (28): the LLMD...
Are we able to post pictures here? If so, how? I am so antsy waiting on my daughter's test results... We should know by June 6th! I hope it is very clear and conclusive but what do I do if it's not?...
Yeah- it would be nearly impossible- and imagine how much of life she would have to give up. So that is not an option....
Thanks everyone, I went on to read some threads of people who had done the protocol and saw no improvement or felt worse. And with what you're telling me it sounds awful for a nine-year-old,...
As if things could not get any more confusing as I delve into the world of Lyme disease... My daughter's lab results came back and she is insufficient in vitamin D so I have been researching about...
Thanks Pirouette! Your input is always so helpful!...
The initial blood work came back with some interesting outliers: ASO (strep titer): 539 (norm is 29) I'm doing some internet research but does anybody know the (in)significance of these results?...
His website specifically and in detail states that he is a specialist in Lyme disease. He is an MD but practices alternative medicine including hyperbaric chamber treatments. Is that a typical...
Well we had the appointment. I was a little disappointed the doctor didn't spend a lot of time with us (maybe 10 mins) and he just re-asked all the questions I filled in on the form so I don't think...
Hello, At this point after doing tons of research online and filling out the forms for our upcoming LLMD appointment, I highly suspect that my daughter has lyme disease. We see the LMD tomorrow for...
Thank you!! Hopefully you got my email Schmen!...
Bump...
Thank you- these were recommendations from ILADS and lymedisease.org. The one that's cheaper was on both lists and I just felt that the receptionist had a caring attitude versus just explaining the...
So I have called two LL M.D.'s in my area – the first one wanted $325 for an initial visit and the second one wanted $650 for initial visit (but was offering a sale price of $450 due to Lyme disease...
Alright- the LLMD in the more swanky area wanted $650 for the initial visit so $325 isn't looking so bad. Although she was having a "sale price" of $450 because it's Lyme Disease Awareness Month. Hmmm...
Thank you so much. It makes a lot of sense. When they did the lyme test on my daughter in February she had been taking 2000 mg of mycophenolate for nine weeks and she had also been taking a dose of...
Hi, I hate to ask these questions but I'm sure they have come up before and you guys can probably give some really good answers. I want to know why some labs have better testing and why their results...
Hi guys, could this be bumped back to the top? I did not get a lot of info. from my ILADS referral but I will use it if I can't get any more information. I tried the 3 searches as well on the...
I just looked back at pictures on Facebook from the summer of 2015. We camped at the beach near the Santa Monica Mountains, we hiked at Zion, Utah; Park city, Utah; Mammoth Lakes, California as well...
Thank you - my email is now visible!...
Thanks to you all for your feedback and resources!! I did change my email to be visible in my profile and I filled out the referral form on the ILADS site. Sadly, I feel like now that my daughter has...
Thank you! I was wondering how that worked- how do I enable the email option?...
My daughter is 9 and has been struggling since September, 2015. She had a diagnosis of systemic lupus very briefly but that was refuted by the doctors at CHLA. She went off her medication (was on it...
Hi, My daughter's story is very long because we have been through so much since September of 2015 but I will try to stick to the details and then ask my questions. We are not aware of any tick bite...
Thank you so much to both of you for sharing your stories. It is helpful to hear your input. My daughter did have an MRI when she was hospitalized in December- the only thing that showed up was an...