ktdommer

My son had some PANS improvement after 6 rounds of IVIG and Lyme treatment. I'm now wondering what is bartonella and what could be Ehlers- Danlos/Chiari and what mood symptoms could be normal. Has anyone had this test repeated years later? What were differences? Was it worth it? Is the Cunningham testing doing anything new? Testing new areas? Kari

I haven't been here for awhile as life got crazy with husband's cancer- he is doing fine, and son's Chiari discovery along with my EDS diagnosis and now his. Sort of ironic that I battled Lyme for 5 years and got better, only to learn reasons for my flexibility and stretchy skin along with popping joints that go back almost 40 years. Recent easy ankle fracture and slow healing. My son is now 21 and has been living back at home as a necessessity. He didn't qualify for disability and at the time we didn't know about his Chiari or EDS. Yesterday I was watching an amazing EDS specialist on a YouTube video and on his slides popped up PANDAS. He says he has several patients with EDS and PANDAS. So on the search to get son well, we explored autoimmune encephalitis at the Cleveland Clinic. Doc ordered blood work which ruled that out. The ordered MRI with contrast showed. Chiari Malformation which lead to neurosurgeon and a flow study. We then went to CHiari specialist at the CC. Advice is to come back in a year. I'm looking into a third opinion and getting the Cadillac of testing done where he is sitting up for flow study of CSF. Sort of dumb to do this laying down which is not how the Chiari sits when upright. My son is not taking a single med. no therapy or anything. He is working part time and seems happy if social although he will verbalized to me otherwise. We see Lyme doc in April. I'm maintaining on herbs. My next research will be mast cell disorder as VERY often that is found in EDS with POTS. I hope everyone is doing well on the journey with chronic illness. I had no idea that 12 years later I would still be fight for answers and fighting to find educated docs on another rare condition!

I haven't been here for awhile as life got crazy with husband's cancer- he is doing fine, and son's Chiari discovery along with my EDS diagnosis and now his. Sort of ironic that I battled Lyme for 5 years and got better, only to learn reasons for my flexibility and stretchy skin along with popping joints that go back almost 40 years. Recent easy ankle fracture and slow healing. My son is now 21 and has been living back at home as a necessessity. He didn't qualify for disability and at the time we didn't know about his Chiari or EDS. Yesterday I was watching an amazing EDS specialist on a YouTube video and on his slides popped up PANDAS. He says he has several patients with EDS and PANDAS. So on the search to get son well, we explored autoimmune encephalitis at the Cleveland Clinic. Doc ordered blood work which ruled that out. The ordered MRI with contrast showed. Chiari Malformation which lead to neurosurgeon and a flow study. We then went to CHiari specialist at the CC. Advice is to come back in a year. I'm looking into a third opinion and getting the Cadillac of testing done where he is sitting up for flow study of CSF. Sort of dumb to do this laying down which is not how the Chiari sits when upright. My son is not taking a single med. no therapy or anything. He is working part time and seems happy if social although he will verbalized to me otherwise. We see Lyme doc in April. I'm maintaining on herbs. My next research will be mast cell disorder as VERY often that is found in EDS with POTS. I hope everyone is doing well on the journey with chronic illness. I had no idea that 12 years later I would still be fight for answers and fighting to find educated docs on another rare condition!

If this is a new infection I would treat with an ILADS doctor and not leave anything to chance. I would treat with urgency and travel wherever needed. I am dealing with a miserable19 year old who went undiagnosed for too long. Too late. A 3 year old has a good chance of a nice recovery. Once disseminated and chronic it will be harder to achieve. K

My son took zith with malarone for babesia. He couldn't stomach mepron. It was the Artemesia that he herxed the most on. He didn't make it to full dose for 6 months. He pulsed 10 days a month. He also tried Alinia. Good luck.

It is all hard. I'm married to an engineer who sees things black or white. With Lyme and PANS things are mostly grey. Another strain is the financial aspect of treatment. I just stopped talking about all the details of three of sick with Lyme which made it easier and he stopped questioning all the bills. It hurt deeply though that he mentally could not get to my level of involvement and caring. I realized he couldn't and never would. He didn't have it in him. This realization also was helpful. I sometimes would think he had bartonella. Hang in there and know you are not alone in your struggles.

Mommy bee your post is amazing. My son's processing speed is far below his IQ. He is frustrated by it as are we as parents. I'm not talking auditory processing. The doctor believes it is an effect of bartonella mostly. If your daughter has Lyme would it be congenital? Do you remember a bite? It gets tricky knowing what might have been despite PANS or Lyme. K

Has Lyme been ruled out. I don't know your son's story. I have a 19 uyear old with PANS and having adult sick children is plain hard. My son did 6 rounds of IVIg and it seemed to help. Insurance won't allow any more. Have you read about canabis for treatment? Have you tried any supplements or HBOT? Hope things get better for your son. K

I imagine a mainstream neurologist is not going to be much help on the Lyme front. I was misdiagnosed with Lupus for years. So much pain, so many symptoms, ANA positive. Now I am pain free, nearly symptom free and ANA negative. I never had Lupus, it was Lyme imitating Lupus. That diagnosis was from a huge university. My son's FMS diagnosis came from a top notch Midwest clinic. All of it cleared up with IV antibiotics. He also had days he couldn't walk. Became bed bound. Unfortunately your chances of finding a good LLMD who takes insurance is slim. You will have to find a source of income for a doc that can help you. Think of it as an investment in your health. There is a foundation called Lymetap that helps pay for up to 75% of testing through Igenex. I wouldn't test anywhere else. You might want to do an abx challenge prior. Good Lyme doc will know what to do. In hindsight I would have only tested western blot I gG and IgM for $198.00. my opinion obviously. Your MRI may show MS but they could be Lesions from the Borrelia. My sister's white matter/ lesions improved with Lyme treatment. We saw MANY specialists for years prior to his crash. Nothing helped until he started seeing an ILADS as doctor. How is your mother's health? Any chance you have congenital Lyme? If you want help with finding a doctor, a good site is LymeNet. You can post under seeking a doctor. Be sure to put the state or states in the heading. Let people know if you are willing to travel.

I'm wondering how much his behaviors have changed. Would he still meet clinical diagnosis? I would imagine the panel would improve as the condition improves. Could this be a good sign? My son is sort of the opposite of yours. He lights up significantly on Cunningham but doesn't present so typical of PANS. What is your son's treatment currently? K

There are several supplements that can help with anxiety. Taurine and theanine are just 2 of them. You would have to start slow though and build up. Not enough time to do that in your situation. Would Benadryl help her sleep on the way there? I did a lot of bribing to get my kids to drive 9 hours to Chicago for treatment. Psychs have not done much for our son. He is doing psych meds at night and getting help with a sleep issue on top of it. It has been 4 years of experimenting. Therapy might help if you were able to find a top notch therapist. I know our Ohio PANS/L yme doc makes house calls to a cople of his PANS patients who can't leave the house. He does phone conferences between in person appointments. Good luck today. Hope the doc knows just what to do.

For a challenge my understanding is 4 weeks is good, heard of 2 weeks also. We did not challenge but know many that have. Yes, became more positive. Remember Lyme diagnosis does not have to be based on testing. Maybe you want it for help with insurance. Be ready for some herxing possibly with doxy. Think about having detoxing methods ready. K

My experience with PANS is having a son born with Lyme develop PANS. In his case antibiotics took away bipolar Type symptoms. He is 19 now. Not so much PANS anymore as autoimmune and Lyme. He also did IVIG and had some improvement with psych issues. So to answer your question, antibiotics could be a game changer if Lyme or other lingering bacteria. Tell us more about yourself. Where did you grow up? Did you have a dog or cat? Did you camp or hike? Any physical symptoms? Many women with Lyme have a terrible time with symptoms flaring before their periods. Can you work? Strep history? I don't believe it is too late at all. You just need a good doc and a treatment plan. Be willing to make diet changes and take supplements. Some things you can start now once you learn more. Wishing you the best, K

Having a sick child is a lot to deal with. Having a child with possibly PANs and or Lyme is a lot. You are smart to think about limiting pokes but I don't know how open your doc is going to be to testing. A regular western blot at a local lab probably won't catch Lyme disease, especially if an older infection. Igenex labs is the best place to test. A Lyme doc may want to do an antibiotic challenge. The timing of all of this would be difficult. With Lyme and coinfections there are a ton of labs. A good doc will be able to prioritize what needs to be tested first. So does your son have A PANS doc? How old is he? Feel free to post often and ask questions as you begin this journey. I know your heart is breaking and you are worried. Make sure to take care of yourself, too. I'm sorry you are having to go through this time of unknown. Best wishes, K

I would suggest seeking an ILADS as trained doctor. Mono antibiotic therapy will not get one well. Can I speak to you from experience and say I believe you need to treat aggressively. Your son is 16 which leaves two years before he is an adult. Get him as well as you can as quickly as you can. Although no big study on congenital Lyme, many docs know it is happening. I can truly say I passed on Lyme and the exact same coinfections to my boys. I wish you the best, Kari

How wonderful for your family!

Supposedly transdermal is better than orally but not as good as IV. It is a lot to think about for sure! K

Michel- Please hang in there! It will and does get better. You need to get in the hands of a good doctor. Did you find someone to talk to? Tomorrow is a new day and the doctor offices wil be open. The ER is always open. Thinking of you, K

I have learned that there is never a dull moment in the world of Lyme and PANS. I have learned that it is harder to treat a sick 19 year old living on his own than a 12 year old. I have learned that all doctors get something wrong and that they can let you go whenever they want to. I've learned that husbands struggle with chronic illness in their family and handle it differently. I've learned that an advocate can help at the school level. I've learned that nothing good ever comes from a psych admit. I've learned that the disability process is a long one and a time consumer. I wish I knew to organize better early on. I've learned more about private labs, supplements and body systems than I ever would have cared to. I've learned that housing for the chronically ill and mentally ill adult has a long waiting list. I've learned to seek out state programs for things I never dreamt I'd be inquiring about such as food resources and job training for people with disabilities. I've learned that adding PANS to an existing Lyme, FMS, CFS, depression, mood disorder, bartonella, babesia and Mycoplasms diagnosis is pure ! I've learned that people on forums going through what you are going through can be lifesavers. I've learned that you keep going on and look for the simple pleasures. I've learned that my kids are worth every bit that I personally struggle. I've learned to accept the new normal. I think.

Jsmom How is your health? Could you have passed on Lyme? Because your child had symptoms sort of before bites, it made me wonder. You may not even know you have Lyme. Insect bites then may have carried something that overwhelmed her immune system. I would try Igenex testing. Lymetap.org can help financially with the testing. Any headaches, joint pain etc? Has ANA showed positive? The unknowing is really hard! Any chance you could get to an ILADS as doc? K

I literally just spread on my sons's leftover transdermal glutathione. Our doc goes with transdermal. I get it compounded. I have LYme and same MTHFR as kids. Nickel mama- wonder if we could possibly have same Ohio doc? Ours is ILADS doc but has treated PANS. Our kids take some of the same supplements. I chuckled when I read your list. What lab do you use for glutathione testing? We don't use NAC with Lyme. Can't remember exactly why but something like it feeds the bacteria. Good luck, K

A lot of people order from swanson's online for some of the best pricing. I read a lot of reviews before ordering. Some things of importance I go strictly by brand doc says, for others I get permission or run a brand by him. For Olive Leaf Extract, Seagate is the best. K

Yes, it could be Lyme. She has too many symptoms in my opinion to just be PANS. Sounds like bartonella and or babesia could be coinfections. I would specifically seek out a top ILADS doctor, not just an LLMD. Testing should probably be done through IgebneX. lymetap is an organization that helps cover the costs, if you should need it and qualify. I would check out LymeNet. Org and see what dietary changes you could start to make with maybe the addition of a few safe herbs. A good Lyme source is Buuroscanos Guide to Lyme Treatment which is free by googling. You can start getting educated so you will know what a good treatment looks like. I hope you get the answers you need. Lyme and PANS is a difficult road so take care of yourself, too. K

I always tell people with sick children to do whatever they can before puberty as it changes everything like PANs as and Lyme for the worse. I push hard the ruling in or out of what it might be. The process to recovery can take time, so start as soon as you can. Now I can add do whatever you can to help a Child before age 18. Everything in the medical and psych communities changes then also. Big time! A suicidal child is hard but a suicidal adult child not living with you is the worst! Fortunately my sister who looked like she had MS and my 6 year old nephew that had odd behaviors did get tested only months after we tested positive. Both of us passed on Lyme in utero unknowingly to all of our kids. Best wishes, K

My son was using bus bar for sleep. Definitely helped for that. I don't know now what has improved from meds and what from IVIG.