ktdommer

You are in a tough spot and one. I relate to very well. I too spent years explaining my son's behavior and illness. You two will have to set some rules sort of speak. For us, it isn't over despite my son being kicked out of the house. Now we battle over rent, lost phones, smoking, stolen bikes, meds and treatment and finances. We sort of stopped speaking too much about it. Easier. I knew he didn't get it and that in his brain he couldn't get it. He did not see what I saw nor did he hear everything our son would say. I've stopped expecting anyone to get it. Chronic illness is hard on any family, but a misunderstood, chronic disease is worse. For us we had to calm the reacting to the behaviors part. We had to, for sake of sanity agree that we wouldn't deal with the illness the same way and accept it and respect it. I've often wondered if it would have been easier on my own. Things are getting better I think. Hang in there! K

Thanks everyone for sharing. Very helpful!

I had received a recommendation to Pharmasan Labs years ago. I spoke to our Lyme/PANS doc and he sent the kit which uses urine. Has anyone else used this lab and can you share with me the results? I guess I'm looking for anything that will give reasons that antidepressants don't work and why working is impossible. Test measures: Creatinine A Dopamine Epinephrine GABA Glutamate Glycine Histamine Norepinephrine PEA Seratonin Taurine Creatinine B DOPAC Thanks for your help, K

I've used VSL DS #3 with good results for 3 years. It is a prescription. My copay is $30 so cheaper than over the counter. Also use Jarrow Saccaromyces boulardii. Purchase at Swanson's online for the best price. Take probiotics on an empty stomach away from antibiotics. I do 10 days a month of diflucan. Also did high doses of nystatin for a year. Good luck, K

I can tell you what we have done for Lyme and it is way more integrative. I'm wondering if you are with an ILADS s trained doc? I notice right away that there seems to be no cyst buster in the treatment plan. A good doc would diagnose coinfections clinically. For my son Igenex didn't pick up babesia but LabCorp,did. Also bartonella is there clinically with the scratch marks in a deep purple lab work never shows anything with that coinfection. You didn't mention a virus treatment. Maybe waiting to start. Have labs been done? My son is also treating low testosterone and thyroid, low immune system, vitamin deficiencies and poor sleep. How old do you think the infection is? congenital? Have you been tested? If I could go back in time, I would have sought out one of the top Lyme docs. It was puberty that made everything worse. I would have been more aggressive with IV. It was so scary at first and proved to be the most helpful. Would have done it for longer and pulsed different IV meds. Lyme and PANDAS is a difficult journey to healing. I wish you and your son the best. K

If no one has replied, you might consider donating it to a local school. I am a teacher and we use the vests in our elementary school. Sometimes we have students not yet diagnosed that benefit from the vest as well as our students with Autism. Some schools have very little budget for these kinds of things and some families can't afford them.

I'm wondering if Igenex can put a sort of rush on his testing or at least flag it as priority. I had a situation with one of my sons and I was able to call everyday to see where he was in the process. My doc got 5 minutes after the lab had finished results. Igenex staff is so kind and professional. Has he had IV antibiotics? If so, what and how long? Wishing your family the very best.

Strep titters have been done and are normal. Think this happened after 9months of IV antibiotics. No throat involvement. He is having his EBV. IgG and IgM checked this week with. A thyroid antibody showed up last month in testing. Thanks ladies for your posts. Will have time this week to google more.

I have waited nearly 9 months for the final test in my son's Cunningham Panel and was shocked when the D2 came back in range when the other 4 were clearly out of range. So, I am wondering what the relevance of having one normal test and 4 abnormal tests are? Does this indicate anything? I am sort of wondering if because this test was delayed soooo long due to processing issues that maybe the result is inaccurate. Just had doc appt on Thursday and today test result came in. Here are all the results which confirms PANS, any thoughts? D1 8000 (500-2,000) D2 4000 (2,000-8,000) Lysoganglioside (80-320) Tubulin 4000 (250-1,000) CaM Kinase 157 (53-130) Thanks, Kari

I don't think a doctor or scientist would go near the controversial congenital Lyme subject. No money to be made in it anyway. Our old doc did his own sort of study within his patient group. This is part of the problem, data needs to be collected from all LLMD's, but how can you say positively a case is congenital. So I believe that I gave Lyme to both of my boys. I knew I was sicker than most but was told it was allergies or depression for the reason for sleeping so much etc. I wasn't feeling too bad when I had my babies. My first son is the healthiest, nursed him for two years, then the second pregnancy I felt terrible and sort of never felt the same again. He nursed for 6 months before all of us got pneumonia. Both boys progressed normally as children. I'm not sure why they were spared the developmental delays other than maybe I wasn't very symptomatic. It seemed to come out with my youngest at puberty. Once my sickest was positive, the doc said I should be tested which I totally didn't understand as I was told I had Lupus. Then he said my healthy son should be tested. Turns out he wasn't as healthy as we thought. My sister also passed on Lyme to her son and only knew because we all had been tested so she got tested since she seemed to maybe be getting MS and then her son. That was one terrible year! Now I wish someone before the birth of my children had connected the dots of my symptoms! K

I remember trying to get in to her years ago and it was a time when she was starting to do more lectures/talks so waiting list was nearing a year. I didn't have a year. I've read numerous articles of hers and think highly of her. K

So another doc appointment has come and gone since I started this post. My son's doc had tested for a thyroid antibody which showed up. Changing thyroid treatment to synthroid. My son will be getting the Pharmasan Labs testing done. Doc was familiar with it. Does anyone know the price of this? Currently fighting insurance for 6 more months of IVIG. Very few positive changes, but worth continuing if headed in the right direction even if slowly. He will have a Community Based Work assessment done next week. Should be interesting. K

I have no advice, but want you to know that I know your pain and wish you the best. Suicidal young adults is a difficult thing. Heartbreaking. I always feel like there is no where to go for our sick, sick Lyme/PANS adult kids. Committing isn't always the answer especially since it most surely means the end of Lyme/PANs treatment. What meds was your daughter taking prior to starting Bart meds? Is candida an issue? Wishing answers for you and your family, Kari

My son, age 19 takes Adderall XR. He feels it helps him a lot. He was diagnosed at age 5 with ADHD, long before L yme or PANS. It was a lifesaver for so many reasons. He would request it if he had a Saturday soccer game because he played better he felt and didn't get in trouble with the coach. Then... Everything changed in 2010.

I have spoken to them on the phone and they have been helpful. My son is also still missing one panel. On the phone results were interpreted as significant and last result won't change overall diagnosis. My son got the most help with Lyme treatment and IV abx. He happens to see an autism doc with ILADS training, now treating Lyme and PANDAS. He has patients with multiple issues. Out old doc would say Cd57 level of 10 shows an immune system highly affected by Lyme. Would also say that level would probably need to be treated with IV abx. Any viral testing completed? What state do you live in? LymeNet.org has a physician request section of their forum. Kari

I also think that the Lyme treatment isn't enough especially with bartonella. Have you read Burroscano's treatment guidelines? When we started with new ILADS as doc some meds were at higher doses. I was amazed and then realized we had probably been under treated. It was IV Rocephin that worked miracles on my son with orals but in hindsight 9 months wasn't enough. I would highly suggest IV antibiotics and do it while he is cooperative. The older they get sometimes the harder it is to get compliance. everything about Lyme and PANS is awful but here is hope. You are already doing so much. Have you been to LymeNet, a forum, to ask more specific Lyme questions? I hope you fine answers soon.

Lyme therapy is never a single antibiotic unless treating very early in the disease. We have never used bactrim.

I would recommend LabCorp for CD 57. Be aware that not all insurance plans cover this test. If they don't, it can be cheaper to not have it go through insurance first. We self paid it on prior insurance but with new plan it is covered. CD57 is a Type of test that measures the impact Borrelia has had on the immune system specifically. Not many docs using it any more to measure treatment progress. It can be an indicator that Lyme is an issue.

My son did the Cunningham Panel at Moleculara Labs. The results were clearly positive.

Is Lyme an issue for you? Have you been tested? If you do better with mino, makes me wonder how you would do with a combo antibiotic.

We have all tolerated mepron. Some herxing with sickest child. Switched to malarone with plaquenil and artemisinin for babesia. I think of these meds as our chemo for Lyme. There will be a pay off in the end. Our doc doesn't allow heavy duty herxing and let's us decide when a break is needed. My husband had the good fortune of joining us with experiencing mepron due to cancer. He takes it profolactically for pneumonia. Can't seem to keep the liquid fluorescent stuff out of our house.

Three in my family took/takeArtemesia. Started with Zhang's Artemesia. Sickest son herxed the worst. Took 6 months to ramp up. I'm taking it 10 days on a month and get sleepy on it. Love plaquenil. Took away all arthritic pain. 3 of us tolerated it well. Too bad there was a reaction. Long ago I couldn't take the generic due to a rash. Had to have name brand. We all have babesia Duncani.

Anyone with updates on this old post?

Thanks everyone for the good information. He is doing high dose. After test name is test range, then July testing 2014 and then testing last summer. Doc had made a statement that for a 19 year old boy numbers should be much higher. Mold has been ruled our with testing. I do want to inquire about nagalase at next appt. Son isn't taking any meds right now. Seeing some improvement in energy. Hard to get him to talk about improvements. He is so over it all! Interesting about testing during IVIG. I thought immunoglobins would stay in body. K

I was CDC positive for Lyme, a rare thing to get, through Igenex with a 30 year old infection. My one son was Igenix positive with a 15 year old infection. Other son lit up in a few areas and was clinically diagnosed. We did no abx challenges. My husband only had a few bands IND but on the Borrelia specific bands.