ktdommer

We do tindamax 2 days a week, 5 off. I herxed with primarily fatigue at first. Now I take it without issue. Son with PANS also herxed at first. No increase in movements. We have been taking tindamax for 3 years. It is important to Lyme treatment. OUr ILADS doc has us treating 6 months past any symptoms and never takes patients off in the winter.

It helped me to actually grieve the loss of my son as he was as a youngster. Even if he comes fully around in the future, the illnesses will have changed him. He is fortunate to have made huge strides with Lyme treatment and 9 months of Iv abx. Now onto IVIG. In the Lyme world treatment is compared to peeling back layers of the onion. We are still peeling which gives me hope that we will get there. Many layers down, more to go. Keep fighting the fight, learn all you can, try new treatments. Believe wellness can happen! K

Forgot to add that I would have Lupus rash on face. Diagnosed with Lupus in 1999. Treated Lyme for 2 years before all rashes and ANA became normal. Don't believe I ever had lupus.

My son was bed bound and in constant pain before treating for Lyme. He is physically so much better. I would definitely go with an ILADS a doc. My doc would read your son's IgeneX results as positive for Lyme. I wish you the best!

Three in my family on Enhansa for about a year. Top dose is 6 a day for PANS son. I can't say what it helps as we all take so many things in the fight against LYme and coinfections. Lots of other supplements also. My insurance has a $30 copay for compounded meds so we get it from Lee Silsby. Supposed to be something special in the way it is compounded there compared to curcumin. We see the doc who helped create the formula years ago. I'm glad there are quick results for some.

Thanks for posting everyone. My son said new SSRI was making his tremor worse so he is switched again. At 18 he went in on his own to his 2nd appt with new psych not remembering he has already tried the exact same tpmed at exact same dose.mWish psychs of very young adult would advocate for parents being in appointment!! He has so many cognitive issues from Lyme and Bart. She knows that then takes his word on everything. Got to hope IVIG AG does it's magic and we can close the book on psychs.

Thanks for posting! Glad things are looking up.

My 18 year old son has one Hd IVIG treatment under his belt with the second one scheduled this Friday. When he was at his PANS/Lyme doc, he said he felt a lot better for 3 days. I believe he has had some lasting improvements. I would say that his energy level is up. I am hopeful that he will be one of the stories of slow continual improvement. Insurance has agreed to pay for 6 treatments. I wonder if we will have to fight for more. He has been on several antibiotics for years. The theory is that IVIg will increase his immune system so that finally abx treatment will have a fighting chance against Lyme and bartonella. He also takes a healthy dose of Valtrex daily and supplements. I'm inspired today from other posts to tighten down his diet.

Nearly 4 years on high dose antibiotics for 3 of us. I take VSL #3 DS which insurance covers. I swear it has saved me from any problems at all. I take it with natural applesauce. Sneak it to my boys in a smoothie when I can. Take tons of jarrow SB. Also mix it up with other strains. We all take high doses of nystatin a day. 12 pills each. I didn't want to pay the compounding price to have a high dose made. We all take Enhansa, try to watch carbs. I take diflucan 2 weeks a month. had Oats testing done and look OK. Oldest going off abx this month closely. No idea how long myself and 18 year old son will stay on. Taking care of gut is a lot of work and money.

I'm feeling a little bit better after calling some PANDAS docs in Ohio. Spoke with Dr. K's office near Cleveland. Although she is pediatric, she treats until about age 22 or when a typical kid would graduate college. This opens a door for my son at age 18. My son has a medical doctor who specializes in autism and Lyme who happens to have treated PANS. I need to dig deeper with him to find out if another specialized doc needs to be brought on board. It is our first in person appointment with him since the PANS diagnosis. We are doing so many integrative things while targeting virus and bacterial loads. I think we are on the right track. Just need to nail down the most helpful psych meds. It is this doc who ordered IVIG. Many years of hanging in there but what else can I do?! Thanks!

Can you PM me a name of a doctor who can help my 18 year old son? I didn't see anything for my area on this website's list. I know of a couple of pediatric docs but am struggling to find adult PANS doc. Thanks!

Thanks for replying. I got a call this morning from my son's neuro psyche with a recommendation for a doc in MI. Will be about a 2 hour drive. The doc got my message yesterday and then did some digging around with her colleagues. My son's symptoms aren't classic PANS. He has some OCD revolving around the dog. Movement disorder is more of a leg tremor. He has a mood disorder and severe depression. Undiagnosed personality disorder and possibly bipolar. I will explore the find link. My husband and I both graduated from USF. If we have to travel, I think we would go to NJ to see Dr. B. Who specializes in Lyme and Bart but also treats PANS. Sometimes I am questioning myself as doctors disbelieve or form inaccurate opinions about my son. When he is rejected, I feel rejected. I think I am wearing down as my son's only advocate. Been doing it for way too many years. May be losing my fight and now to tackle PANS another misunderstood condition. One day at a time again.

My son was let go from his psychiatrist a month ago as she didn't know how to help him. We got a referral to a top notch guy who declined my son's case as being complicated. Didn't know they could pick and choose. Today he met new psychiatrist who within the first 5 minutes said she didn't know if she could help. 45 minutes later with a history but without in depth information about his mood she said, well we could try switching lexapro to Zoloft. So out the door we went. I'm at an absolute loss as to who can help. Hospitalizations don't help, therapy is a waste as the patient has to be willing. Meds aren't working, haven't for years. Supplements for depression aren't working. Do I blame all of this on PANS? When does he get better? Already doing antibiotics and just started IVIG. He is 18 and nearly unbearable to live with. Do I need to seek yet another doc? Do PANS docs treat the psychiatric stuff? Advice?

Welcome, I am a new member also. I feel your pain. So many unknowns in the beginning. You are really going through a lot. I would think that PANS testing is warranted. I had our Lyme doc write the orders for the Cunningham panel. Information at Moleculara Labs. I will tell you they are running behind. Your doc should know that strep is not the only trigger. Maybe you could give them information on PANS. Are you healthy? Have you asked to get on a cancellation list? Best wishes, Kari

Our kids could be on he MSIDS poster together. People are clueless what all that simple diagnosis entails. My youngest is an MSIDSer big time. Who did all the neuropsych testing or diagnosing? I am so frustrated because psychs and therapists don't name it. Also, do psych meds work at all for symptoms?

Nickel mama: the diagnosis of Lyme is a mixed blessing. First relief that you finally know what you are dealing with and then the realization of what a complicated disease it is. If only it were just Lyme. I waited almost a year before testing my son. Moms online insisted but my son just didn't have the fatigue then that he did. I assumed he would have lupus diagnosed some day like me- wrongfully diagnosed. I have learned so much a long the way. Still fighting! Dr. Horowitz's book is informative and helpful but make sure you are in the right mindset to take in all that Lyme has to offer the body. Just an amazing disease. On a positive note, my oldest is weaning off treatment and is symptom free. I'm working full time as a teacher with chronic Lyme. A good ILADS doc got my sickest from home bound to back to school years ago. Let me know if I can help at all.

Thanks Kim. I am pretty sure it is high dose. I took a picture of the bag of IG before it was hung but can't read it. Doc is ILADS doc and familiar with PANS. I'm sure it is high dose but not sure on exact dosage as my son is 6'3 and 240 pounds. I know weight is used in calculating. He is autoimmune with positive ANA.

Thanks for responding. All very good information. I actually don't know his dosing. I am assuming high dose as he will only get it once a month. He meets with doc on Friday so will find out for sure. His IVIG did not contain steroids as he has Lyme. I was so glad that local cancer clinic could administer doctor's orders from a city 2.5 hours away. It made for an easier day. Hope to get infusion done at home for the next 5. I appreciate the posts!

Yesterday my youngest with Lyme and PANS did his first IVIG treatment. He did well with only a slight headache. Today he says he feels no different. He is approved by insurance for 5 more treatments- one a month I have read everything I can about IVIG, and I think what it comes down to is that everyone responds differently. I want some clear cut prognosis and I don't think I'm going to get it. I'm worried though that because of his age and length of infection, 18 years, he may respond slower. He may have had PANS for 4 years. Diagnosed last month. I was pursuing IVIG for beaten down immune system before I even knew what PANS was. What facts, information am I missing that would give me hope? Thanks everyone, Kari

A good LLMD knows one abx is never enough to treat Lyme because the bacteria has 3 forms. Most of us have at least one coinfection that may need a different med to treat. Nothing is easy when fighting Lyme. Rifampin would treat Bart. You could read burroscano's treatment guidelines to learn more. also, Horowitz's new book really covers how to treat properly.

I take VSL but I don't have PANs, just Lyme. VSL #3 DS has protected me nicely while taking 3 years of multiple antibiotics. With my $30 copay, it is a cheaper route monthly.

Any chance your son has congenital Lyme? If he did he wouldn't have a normal robust immune system like doc thinks he should have. My son with congenital Lyme didn't show symptoms until age 5 and slowly more and more. Has anyone discussed an antibiotic challenge and then repeat testing? I know our ILADS doc would treat based on labs. Best wishes, Kari

Just chiming in to say how sorry I am that you are going though this. I can't imagine how frustrated you must be. Not sure where you got your info on Igenex docs. Haven't heard of that before. We have an ILADS doc and would be lost without him. My 18 year old son was once bed bound. We test outside of Igenex also and coinfections and CD57 all point to Lyme. Have you tried Deplin? Hope you have better days ahead, K

I think I would want Lyme ruled out before starting an immune suppressant. Not a doctor here. I'm new here so don't know your son's story. My son is 18 with POTS, PANS and Lyme with myco, babs and Bart. He started IVIG yesterday. He was able to get off of all POTS meds with Lyme treatment. K

I noticed you haven't mentioned treatment with plaquenil or tindamax. Doesn't seem like a Burroscano treatment. Is babesia ruled out? Gave you tried rifampin?