ktdommer

Nancy: Sounds like your daughter is in good hands with treatment. IV was covered under Lyme diagnosis and approved after one initial denial. IVIG was not approved for Lyme, but when PANS diagnosis came in it was approved after a peer to peer phone call and labs. Not sure how hard the docs had to fight to get it. Two subclasses were low. I had hoped my son would not need disability and am still somewhat hopeful that he won't but it is a situation where it can take years to get approved. I am always trying to make sure I do everything in my power to help him so I don't have any regrets later. That thinking sort of played into my decision to start with an attorney and have my 18 year old son at the time file for disability. The worst case would be he would have to drop it. The first denial came before all docs even got their paperwork submitted. In my state there is another hoop to jump through so an appeal has been filed. Should know in about 6 months from appeal. Then we assume that will be denied since it is Lyme and he is young. At that point the second appeal will be entered and it will take about a year to have an appointment before the judge. I searched for a good attorney who will file for free. She has a clerk that keeps up with collecting of paperwork etc... My son hasn't worked a day towards social security so has filed for SSI. I'm very concerned about his future. His mental health issues make everything Lyme worse! Boys and chronic illness at age 19 don't mix! There were some helpful people on LymeNet who have gone through disability with their children.

Nancy: we have been extremely fortunate with insurance covering IV all 9 months and IVIG. What else is your daughter taking orally for Lyme? Is doc ILADS? My son is a bit older but such a hard age to be sick. Has your daughter filed for disability? I would like to talk to a mom going down this path.

My 19 year old son started IVIG 4 months ago and completed the first 3 without even a headache. Friday was his 4th dose. 2 hours afterwards he developed a headache, abdominal sharp pains, vomiting, diarrhea and chills. This lasted for 3 hours or until he fell asleep. He woke up completely fine. Has anyone had experience with anything like this? Was it something other than IVIG? It sort of sounds like septic encephalopathy. He has a PANS/Lyme appt on Wednesday and I will talk to the doctor then. I haven't seen any noticeable improvements. In a sick way, I'm hoping that this reaction is a sign of something kicking in.

My youngest is treating all 3. He is 19 now. Doc said no sense doing IVIG in the case of Lyme without antibiotics on board. abx lower bacterial load so IVIG can do its job better. My son has congenital Lyme so 15 years undiagnosed has caused havoc on his immune system. Doc believes all can get better. Our ILADS doc is treating PANS. Suspect three years of Lyme treatment wasn't successful due to poor immune system. We are with a new doc for 1 year now.

5 in my family all with myco and Lyme. Which lab tested for Lyme?

Son did 9 months of IV Rocephin through PICC. Most symptoms cleared. Took him from bed bound to back to High school. Psych issues cleared. He did an aggressive oral treatment with supplements at the same time. Got off too soon. Psych issues and fatigue slowly came back. Wish he would go back on but he refuses at 19. He is doing IVIG with treatment for viruses, Lyme, babesia and bartonella. Would like him to get a port and be ready to commit to a year or more if needed. I would recommend it, just don't end too soon. Now we would treat a bit differently though with IV meds that would be I rotated and hit Bart. Can't remember names doc said. New doc trained with Dr. H out east.

There is an organization called LymeTap that assists with the costs of Lyme testing up to 75% with kids being a priority. So if you only had the western blot IgG and IgM done at Igenex it would be $50'if you qualified. If you don't meet their income guidelines don't be afraid to write them a letter explaining your medical costs etc and they might still approve you. Your child does not need a big expensive Lyme panel. Has your child had the Cunningham Panel done. That test is a sticker shock. Gave us the evidence we needed to confirm PANS. Hope you get answers soon.

Ginger- what are your son's coinfections? Are viruses being treated?

We take high doses of nystatin. 12 a day. Doc said we could get it compounded but it is too expensive. No problems that I know of. Taking for abx use and not PANS.

Can you explain what the lab tests names are? Is it a panel? I would be interested in this for myself. Hope someone can answer your question.

Thanks everyone for their posts. Thought he was better so drove him to his house. He called tonight and vomited and has diarrhea. Feels bad and pain in back has escalated back up a bit. Was a level 10 in ER, 8 the next morn and a 4 this afternoon. He has slept so much. Now I'm getting worried it is much more than a sunburn. I think it is triggering more psych stuff. Will call Lyme/ PANS doc in AM.

My son took himself off all meds when he moved out May 22nd. Partly due to forgetting and partly due to the fact that he says he feels better off of them. No doxy and I would think that plaquenil, enhansa, ceftin, zith and tindimax would all be out of his system. Disturbing is a great word to describe what is going on. I will never forget the looks of the people in the ER last night.

My 19 year old son with PANS, Lyme, babs and bart decided to go swimming in filthy Lake Eerie water on Sunday. Got a first degree burn but the pain is at a level 10. I met him at the ER last night and he was crying, moaning and thrashing with back pain from his sunburn. Psych was called in and after an evaluation she said there was nothing she could do. Docs thought he was on drugs so I said to give him a tox screen which they didn't. He appeared crazy. They tried xanax didn't help, motrin didn't help then a big shot of haladol helped after an hour. He literally cried for 2 hours and started to hyperventilate. He was dismissed with advice to try Noxema. He slept 14 hours and woke up with pain level of an 8. Tried all sorts of remedies on sunburn on back. Finally knocked him out with his pain and sleep meds. It is so hard to be around and I feel for him. What is going on? Is this a psych issue? It is pain that is shooting and stabbing not a crawling sensation. Wish our Lyme/PANS doc wasn't 2.5 hours away. I tried googling babesia and sunburn just wondering if something could get stirred up with a sunburn. Any thoughts are appreciated.

PianoGirl: 19 is such a hard age to be sick. I applaud you for reaching out for help and understanding. I am a mother to a son your same age. He is sick of being sick also. When you read the Cunningham panel report there should be a sort of bar graph under your results that goes from unlikely to likely. Yours may not have been filled in though if your testing isn't finished. My son was more elevated in all 4 areas you have reported. I agree with others that you need to see an expert. My son is sick with Lyme disease and believe his trigger of PANS was Lyme and not strep. I agree that it may benefit you to explore this route properly if you haven't already. My son is treated for PANS by our ILADS doc. He sees PANS in many of his patients. Any other health issues? What state are you in? Are you able to work or go to school? I hope you find the answers.

Three of us currently on 3 grams of Valtrex. No issues what so ever. No rash, pimples etc... All with high viral loads at one time or the other.

I offer a different view of testing. I once had a normal son. Things started to slowly change in his body. No big deal at first. Then I believe puberty changed all that. Everything came out that was maybe dormant or festering. If I had known then, what I know now, I would have tested through Igenex and paid the $200 for basic western blot. Not tons of money. Then, when things happened for the worst we would have known how to jump on it and not lost so much precious time with the unknown. We could have had a Lyme doc lined up and treated herbally which wasn't a choice when he crashed and became bed bound. We treated my healthier son who had very few symptoms. Didn't think they were symptoms at first like TMj we thought were from braces and hip pain from sports. He is a senior in college and now off of treatment. He is symtomatic free and doing very well. Did we make the right decision? It is my youngest son who is 19 and a total mess. Your son is a bit different, but I believe I still would have wanted to know either way. The disease can change so quickly. I am not a Facebook person. I do know what you are talking about however. My opinion comes from a lot of heartache that I wonder if could have some how been avoided.

My 19 year old son had his 3rd IVIG on Friday. It seems like his energy is improving. He doesn't give me specifics anymore on his health. Cognitive issues still terrible! If I remember right people have posted about the 3rd IVIG being the one they saw the most change. What should I be looking for? He doesn't tic. Some psych issues I can see/hear, others are quiet. Do you retest any labs at this point to document changes? Took a picture of my son's IVIg bag. Says gamma guard liquid 70 grams. Total volume 700 ml. He weighs 230 at 6'3. Is this a high dose? Accurate dose? Insurance has approved 3 more doses. Wondering if this will be enough. Kari

A highly recommended OLE brand is Seagate. Don't have specifics on it but easy enough to google. I buy when they have a sale like a BOGO and free shipping. My oldest is transitioning off of abx for Lyme and onto all herbals now that he is symptom free for 6 months. No PANS with him.

Did you increase them all at once? I taker resv and OLE without issue. However, sida acuta gave me the worst herx of my life. Start really slow and low on that one.

Three of us taking 3 grams of Valtrex a day. Been a year now. Virus loads coming down slowly. Take supplements like Enhansa also for viruses. We never herxed when starting. No overnight changes but son with PANS didn't really tic either. Doc told us to wash the blue off of Valtrex as it contains aluminum. Too much work to do for 9 pills a day. Using white only brand now.

Hmrz- is Lyme ruled out? Vasculitis makes me think of weakened immune system from chronic disease. Common with Lyme disease it seems. Has your son had an ANA done? I ask because when I had a high ANA I loved what steroids did for me. I felt so much energy and clarity. Still dream about those days. Off of them all aches and fatigue came back.

I'm new to PANS but experienced with Lyme. Is there more to your sons treatment? Another antibiotic? Is Lyme confirmed and treated in the past? Has there been a cyst buster on board? Even if treating just babesia, Artemesin should be part of treatment 10 days a month. Maybe he is waiting to see how herxing goes. I had the most recovery with Bart while treated with levaquin. Rifampin works, but levaquin was a game changer.

We take rifampin for bartonella. Hits Lyme also. No side effects except for orange urine. It cleared much of my brain fog. My son had rages prior to rifampin. K

What lab did you use for Lyme testing? How is Bart being treated? My son has Bart specific abx called rifampin. It may be that one abx at a time isn't going to out a dent in the bacterial load. I always struggle with treatment and when to switch it up.

Can you travel? Cleveland?