ktdommer

My 19 year old son's testing is back and his doc appt isn't until September 12. He has been in Lyme treatment for 4 years. Diagnosed PAns in February and has completed his 5th HD IVIG. Can you help me understand his labs? Doesn't seem like much improvement. I've googled the topics quite a bit and don't find help. I'm wondering if docs look at age of patient within these normal ranges. Does anything stand out? Also wondering if an immunologist would be helpful at all. Hate to bring in a new doc that does more damage than good. Any thoughts? Thanks! Range. 7/21/14. 6/10/13 IgA. 68-378. 92. 72 IgM. 60-263. 143. 117 IgG. 694-1618. 925. 843 IgG sub1. 382-929. 463. 466 2. 242-700. 309. 216 3. 22-176. 30.5. 37.5 4. 4-86. 22.7. 22.1

Makes me hopeful to read stories like yours. My son is also dealing with Lyme and PANS. He's done 5 months of IVIG so far. Congrats!

I personally take a prescription strength probiotic for ulcerative colitis ( which I don't have) called VSL#3 DS. It is amazing! I order from Swanson's online Jarrow Sacchromyces Boulardii+ MOS. it has 5 billion per capsules. We each take 4 a day away for abx.

Thanks, mama. Doctor prefers Motrin. I get stuck in all my years of using Tylenol.

How old is your son? What viral testing has he had done? Anything like HHV6? We take prescription Valtrex. For supplements we take VirusStop and Enhansa. Also OLE and GSE. Some of these dually hit bacteria. One son did Lauricidin pellets for a year. Also tried BRM4. research nutritionals has a couple of products we've used in the past.

For $200 Igenex will run western blot IgG and IgM. Go to website, call them and request a testing kit at no charge. You will need a doc to sign for it. Doesn't have to treat Lyme just be willing to accept the faxed report. Can be any type of doc.

I personally have tried LDN. I became so arthritic on it. In hindsight I should have started at an even lower dose. Tons of info on it if you google it. I learned a lot by joining an LDN forum. It may be something my son does down the road.

Haven't had problem with insurance but actually had a pharmacy refuse to fill script as they were concerned about long term abx use. Didn't know it was their job and didn't know they were doctors. Keep fighting. We do on other things. Put in appeals etc.

Doc doesn't accept insurance. He spends a lot of time with us. Works to fight insurance for things like IVIG. He is also helping with disability paperwork for youngest son. Seems like there is always a question about something Lyme or PANS plus endless prescriptions to refill etc... Our doc has 2 offices and 4 gals on staff full time. His rates are high to me probably the norm now. 4 years of treating 3 in family with Lyme. Insurance has paid for meds, IV, IVIG, labs and diagnostic things like MRIs. I don't complain too much as it is worse for many.

She could also save the tick and send it off for testing. I imagine the tick might have to be in tack to do this. Igenex tests ticks and some states have a state run program for free tick testing. In my personal experience I would treat with doxy for 4 weeks. Some docs now are adding a cyst buster to initial treatment like tindamax as research has shown the spirochete can quickly go into cyst form. I would do ANYTHING. To prevent what happened to me and my children.

Hope- my story is opposite of yours. Lyme world for 3.5 years and now PANS for 6 years. Either way it feels like a double whammy to me. One condition alone would be plenty. So you have a lot to figure out. It is complicated combining Lyme and PANS. We will never know the trigger of PANS. Sounds like your son could have bartonella as a coinfection. I'm guessing the doc discussed this with you when talking about rages and sore soles of the feet. Lyme disease does require 3 antibiotics to treat the three forms of the spirochete. It takes a very skilled doctor to treat Lyme. I've met many wonderful and knowledgeable parents on this forum. I tend to go to Lymenet.org to post more specific Lyme questions. It has now been 4 years of Lyme treatment for my son who is 19. I'm still learning. If I could change one thing it would have been to invest in a better ILADS doctor sooner. Also would have stayed on IV much longer than 9 months. My son has congenital Lyme so a different situation there. You will learn more about the ridiculous reality of Lyme testing. I hope Igenex is helpful. My husband's results had a quick 3 week turn around time with them last month. I would ask your doctor about testorone testing for your son. my nephew at age 8 runs way high out of range. My 19 year old is incredibly low. Just a piece of the puzzle. Young kids like your son bounce back faster than those with congenital or chronic Lyme. Stay positive and know that he can beat both conditions. Best wishes!

Our doctor thought the reaction was a good sign and the immunoglobins were trying to take hold. He had a weird blood marker elevated also showing he is starting to fight something. We have been doing hydration but not Tylenol as there were no symptoms. I will do both this month. Also will check rate of infusion. Seemed to be same amount of time. Rachel- my son has been sick since 9. It started with cyclic vomiting syndrome and lead to bedbound by 15. Then came the diagnosis of Lyme, Bart and babesia.

We are treating viruses pretty hard due to lab work that revealed multiple viruses at varying degrees. We take 3 grams of Valtrex a day. First ILADS doc prescribed 1,000 mgs a day. Don't know how to measure improvements with viruses because treating so many things at once.m Also we treat viruses with Enhansa and other supplements.

My husband was diagnosed with Multiple Myeloma Cancer of the bone marrow in late May. I made him get tested through Igenex because he will have a bone marrow transplant in October that will require a wiping out of the immune system. I know Borrelia too well and this scares me. I've had Lyme for 31 years and married for 21. His results are: IgM 30+. 31 IND. 41. IND. IgG 31 IND. He will not talk any more about the possibility of Lyme. Done. Doc says should have coinfection testing done and urine test through Igenex. Says unchecked Lyme could have triggered cancer. this was during a phone consult with ILADS doc that my husband didn't know about. Husband has always shown some mild signs that he has blamed on old age being 12 years older than I am. Sometimes I see bartonella. He grew up in the endemic Hudson Valley, NY. Anyone with experience of both Lyme and cancer? Anyone whose husband has been tested for Lyme? Thought?

Triniti- tried PMing but mailbox full I think.

Two boys with congenital Lyme unknowingly passed on. Oldest I breast fed 2 years is healthier. Youngest only 6 months due to pneumonia. Was youngest re bitten is the wondering. 14 years disease grew as so many misdiagnosis. Only one crawling tick ever seen on boys.

Moms love: blamed braces for TMJ pain. blamed soccer for hip pain and this constant need to stretch. Oh, and forgot he had swollen glands for 9 stinking years that the PCP said was just the way he was. I believed her!! 6 months into Lyme treatment glands normal. Today symptom free. Stretch marks are tricky. There is a difference in Bart marks and stretch marks. My son has both. Doctor had me feel the difference. One was smooth and one you could feel rougher surface like a rippling of the skin. From a distance both looked the same. Ones on his arm were not the way a stretch mark would run. I would not second guess what they are and have an ILADS doc look at them. Had Bart marks when underweight. Went away with IV abx. Came back strong. Now overweight some are dark purple. Others white.

Our ILADS/PANS doc put son on Armour. Sure wish he would remember to take it. On a side note, I was diagnosed lupus, very sick, ANA 1:640. after treating Lyme for 3 years, ANA negative and no lupus symptoms. I wish the same for your child some day. I need to read more about band 31 being positive.

Knowing what I know now, I would further test. I treated a seemingly healthy child with symptoms we blamed on braces and sport injuries. I knew he would have stressors attending college for engineering. It would have been a gamble as to whether or not he would become sick. I would have never tested him for Lyme had his brother and myself not have tested positive. Things showed up like low testosterone, weak adrenals, viruses, Lyme and babesia. We had no idea. He was an athletic honors student. Treated and testosterone now a healthy level, adrenals good, jaw pain gone, hip pain gone. He says he can focus better and doesn't frustrate so easily. He never did, but he noticed a difference. He is on all herbals now and symptom free. Never any signs of Bart like his brother or myself. This is just my opinion. Was it the right one? Don't know. Hope so! It is a big decision.

Our attorney doesn't have any fees unless she wins for us- sort of speak. SSI pay would start from month of filing so I think of back pay as her fee. I can't remember the percentage. She has already filed and then filed an appeal. She has a good success rate when in front of a judge. The hope was we wouldn't need her by then. Time will tell!

OMG- we have twins! My son can be so disgusting in all the ways your son is. Later he will be scratching his crotch in public. My son doesn't care and feels no pressure to conform. He doesn't wipe sometimes, doesn't flush other and doesn't wash at 19. Still doesn't brush and now refuses to go to dentist. I cant' make him but told him I would not be paying any of his dental bills from now on. Obstinate is an understatement. I lost my son to sickness in April of 2010, got him back after 9 month of IV abx only to lose him again. I have to believe he doesn't want to be this way. He can get it together for social things but they have to be of high interest. Physically he can't do much when out but will go. Very hard to explain to others. Doing the tough love thing and following through. Kicked him out, he is living in a dump of a sublet, on foodstamps, shopped a food pantry and has 20 dollars a week allowance from his meager savings of birthday money etc. He will be broke August 1st and homeless on the 9th. He STILL cannot do anything. No job interviews, no inquiring about a place to live, no cares. Couldn't clean up when living with parents and doesn't when living with roommates either. Cannot keep track of wallet, phone, bike etc... If he could get part time employment he could have a car of ours and would have money. Two things that used to motivate him. I do not know how to explain this to people. I'm doing what psych said to do and the only thing that is happening is I am losing sleep and he isn't taking any of his meds for Lyme or PANS. My husband says he has to hit rock bottom. Don't think this is what you say to a sick person. Doesn't seem right. Lots of guilt lately. Isn't the behavior our sons have a sign of an illness? I had to lock up all meds and this year even locked my bedroom door. My purse had to stay locked up also. It was like a prison but what is the option? Scary to think what August will bring. I hope you get answers and that things turn around. I truly feel your pain. There are no easy answers in your shoes.

Thanks for replies. Still wondering if seratonin and dopamine testing are helpful in our kids and if testing is reliable.

I am conferencing with my son's Lyme/PANS doc this week and am wondering if there are PANS lab tests I should ask for. What testing should absolutely be done and how often? If I can ask for any testing, what should it be? Are your docs testing for things like dopamine and seratonin? Is there a list available? Yes, I trust our doc, but it would like to make sure that everything is covered. He is not one of the big PANS docs but is a brilliant ILADS doc. My son has had the following lab work: Cunningham PAnel Igenex Babesia Bartonella Viruses Testosterone Some vitamin levels Metals C4A CD57 HLA B27 Thanks everyone.

Proving disability can be a challenge. My son has working hands and legs. Having to prove he can't do anything. Also they looked at depression but determined it is treatable. I didn't have my son committed every time he acted up so he doesn't have a paper trail that would be helpful. With Lyme, we often didn't go to ER or to doc. No paper trail again. Finding out that some symptoms haven't been documented. For example doc says encephalopathy but it isn't in report and says he doesn't need an MRI to know. But disability judges do. We stopped seeing neurology, gastroenterology, rheumatology and cardiology and treated with just Lyme doc. Worked very well for son but now not enough current specialists to complete reports. I am learning that the quality of what the docs submit is KEY.

Nancy: I have a small local health insurance company. When I had Aetna they had policies in place to not treat Lyme over 30 days. So glad my employer switched. There is a lot of info on internet with advice for filing for disability for our kids. Sometimes I found good advice googling with key words fibromyalgia or chronic fatigue. Just that those conditions have been around longer and have more info available. The time it takes varies by state laws, backlog and whether or not denied on first round or not. Having an attorney from the get go has been helpful. It is overwhelming even with one. My sister is 2 years into the process and completely obviously disabled by Lyme with so many additional debilitating conditions. I worry that if something were to happen to me and my husband that financially my son wouldn't make it. I've learned about the sad state of housing for the needy. Very long waiting lists. Aid for disabled is tricky with chronic Lyme and or PANS.