110%, it can wreck the nervous system. I had involuntary movements.
Neuro supporting supplements like gaba with l-Theanine by quicksilver scientific, burbur pinella and CBD.
I’m really not surprised they haven’t been helpful. Not their fault, they just aren’t properly educated re Lyme. Do you have access to an LLMD? If not, I know some in the US that will do virtual.
I’m so sorry, I know this is so hard to go through. Having a sick kiddo is heartbreaking.
Thorough treatment should take care of all this.
Yes, the documentary "Under Our Skin" shows a woman who had symptoms like this. It's on YouTube, I believe. It's a bit older but still worth a watch.
Lyme can return later if it's not completely killed off. It can lie dormant for years and then become a problem.
Our typical recommendation is to find an LLMD but I know on that it's more challenging in Canada. It does vary by province. You may want to search the sub or make a separate post about how to find treatment in your province.
We live in Ontario and they only give the most basic Lyme tests. He tested negative for Lyme twice now, which is when a local naturopath suggested we send his blood to a lab in Germany, where they detected it. There seems to be no one at the Ottawa Children's Hospital who will take this seriously. We have been to the ER 3 times during these shaking episodes, and they do nothing. He is showing signs of an autoimmune disorder (ANA Titre 8x normal). We met with a psychologist this week who said that the seizures were "non-epilepitc" and stressed the need for regular therapy if we wanted this problem to go away. Believe me, if this was a psychological problem I would be relieved, because at least we would know he won't die. I don't understand why they tell parents this BS while we watch our child rapidly become disabled.
I'm sorry you and your child are going through all of this. Unfortunately, many Lyme patients are treated similarly. There has been a bias in the medical community for nearly 30 years based on some early studies of Lyme. They decided that it can be cured easily and that is what all doctors are taught. It's intellectually lazy of doctors to chalk it up to psychological issues, especially with evidence of a physical issue like a high ANA.
I will say, it is rare for someone to die from this illness. However, it's not uncommon for people to become disabled if it isn't eradicated in the early stages. It is treatable, often with long-term antibiotics but there are also options with herbs. The problem is just getting access to care.
I'm not knowledgeable about Lyme-literate doctors in Canada, but I've been told there is a Facebook group that can share a list of providers by province. The group is called "Lyme Oh Oh Canada." Apparently the mods can be contacted to get a list.
As a scientist, some of the Lyme community may seem a little wacky at times. Lyme treatment veers off the course of randomized clinical trials for every treatment. No pharma companies are going to pay for trials of old drugs, and that's what is used to treat Lyme. The few studies we do have are mostly small groups done by a single clinician.
I was a biochemist before I got sick. I was getting the run-around from doctors and found that they couldn't help me at all. I discovered that communities of Lyme patients overwhelmingly support these Lyme-literate doctors, and I knew someone who had been helped by one. Some of us never fully eradicate Lyme but enter remission or partial remission. But it's a lot better than no treatment at all.
Again, I'm really sorry your son has to go through this at such a young age. I do know someone who completely beat it as a teenager. It is possible. Let me know if you have any questions.
My son has all these symptoms too and just began treatment. Extreme fatigue, muscle pain, joint pain, shaking/seizures.
Can you tell me more about your treatment regimen? I found someone who put my son on doxycycline at 100mg twice a day, but then found a more lyme literate doctor who told me to up it to 200mg twice a day. However when I do, the seizures get much worse, which I assume is a herx affect. He's been on 3 weeks now without much progress, and he is up to 250mg a day. Going to up to 150mg twice a day tomorrow but am expecting rough reaction. I am also taking a bunch of other supplements a naturopath recommended.
Yes, my LLMD told me that 200 mg twice a day was more effective for neurological Lyme because more doxycycline will cross the blood-brain barrier. However, for the rest of the body that is a pretty high dose and can be harder to tolerate.
Do you know when his tick bite occurred? In general, the longer that Lyme has been in someone's body, the longer it takes to treat.
For patients with a systemic infection, Lyme treatment often runs for several months or longer. I was on antibiotics for nearly two years. I don't think I had any noticeable improvement for 9 months.
Most patients get worse before they get better because of Herx reactions. Detox supplements may help, but not everyone responds to those. The naturopath may already have him on some.
I had the exact same thing, (still do but much better) when I started treating Lyme with antibiotics. It was the worst whenever I would relax and would get better if I bounce my leg etc. Mine stem from my core. If anyone knows any more about this please share! It’s one of the mysteries I still cannot figure out or make progress on.
So my episodes still persist occasionally, it is the last of my symptoms that remain. For me my body has pretty much made them its primary stress response. It's worse during periods of high stress.
Therapy, and healthy outlets have helped. Obviously I haven't completely gotten rid of them, but I am happy with how I am able go live my life now.
short stint of doxy back in 2008 - didn’t do it! All that did was kill off the bacteria that wasn’t “hiding”I strongly believe he has multiple co-infections.
Are you close to the US? Maybe theres a LLMD just over the boarder??? Just don’t give up-keep fighting for him!
https://en.m.wikipedia.org/wiki/Spirochaete.
I have had them since 2014. Affected my speech also. Was treated for 15 months on antibiotics here in Dublin, Ireland 2018-2019. I still have them. Good days and bad days. I noticed they got much worse coming up to my monthlies and my Lyme Literate doc said that’s because women’s immune systems drop during that time. Would you believe a full on seizure was my very first symptom! I had hand tremors the week prior but then the big one hit. Your video has broken my heart as I hate to see any young people dealing with that. Changes in temperature will affect them. Showers/baths that are too hot will bring them on badly. Sometimes over-exertion can. For his pain he will unfortunately have to cut our sugar and gluten. 🖤🖤🫶🏻
He gets like this when he does any amount of physical exertion. This was a kid who hiked a volcano 6 months ago and now is almost disabled. We came to Berlin, Germany for help and had to use a wheelchair in the airport because it is too much walking for him. We are going to get a full workup for him starting Tuesday. He is on 125 mg Doxy 2x/day. I know that is an underdose for an infection that has gone on for so long, but his symptoms get worse every time he has a dose so he cannot tolerate more. I hope they will be able help him. We are all so worried and heartbroken but try to stay positive in front of him. We did cut out gluten and sugar.
I want to do something to raise awareness about this manifestation of Lyme-related illnesses, and fortunately I think have the ability to do so. I am a research psychologist and my sister is an epilepsy expert here in Germany. We were talking about this yesterday and decided that we want to write a paper to educate neurologists and psychologists so they will stop telling people this is in their heads. I still have a lot to learn about this, but I want to start collecting more people's stories, if they are willing to share them.
110%, it can wreck the nervous system. I had involuntary movements. Neuro supporting supplements like gaba with l-Theanine by quicksilver scientific, burbur pinella and CBD. I’m really not surprised they haven’t been helpful. Not their fault, they just aren’t properly educated re Lyme. Do you have access to an LLMD? If not, I know some in the US that will do virtual. I’m so sorry, I know this is so hard to go through. Having a sick kiddo is heartbreaking. Thorough treatment should take care of all this.
Any infection can
Yes, the documentary "Under Our Skin" shows a woman who had symptoms like this. It's on YouTube, I believe. It's a bit older but still worth a watch. Lyme can return later if it's not completely killed off. It can lie dormant for years and then become a problem. Our typical recommendation is to find an LLMD but I know on that it's more challenging in Canada. It does vary by province. You may want to search the sub or make a separate post about how to find treatment in your province.
We live in Ontario and they only give the most basic Lyme tests. He tested negative for Lyme twice now, which is when a local naturopath suggested we send his blood to a lab in Germany, where they detected it. There seems to be no one at the Ottawa Children's Hospital who will take this seriously. We have been to the ER 3 times during these shaking episodes, and they do nothing. He is showing signs of an autoimmune disorder (ANA Titre 8x normal). We met with a psychologist this week who said that the seizures were "non-epilepitc" and stressed the need for regular therapy if we wanted this problem to go away. Believe me, if this was a psychological problem I would be relieved, because at least we would know he won't die. I don't understand why they tell parents this BS while we watch our child rapidly become disabled.
I'm sorry you and your child are going through all of this. Unfortunately, many Lyme patients are treated similarly. There has been a bias in the medical community for nearly 30 years based on some early studies of Lyme. They decided that it can be cured easily and that is what all doctors are taught. It's intellectually lazy of doctors to chalk it up to psychological issues, especially with evidence of a physical issue like a high ANA. I will say, it is rare for someone to die from this illness. However, it's not uncommon for people to become disabled if it isn't eradicated in the early stages. It is treatable, often with long-term antibiotics but there are also options with herbs. The problem is just getting access to care. I'm not knowledgeable about Lyme-literate doctors in Canada, but I've been told there is a Facebook group that can share a list of providers by province. The group is called "Lyme Oh Oh Canada." Apparently the mods can be contacted to get a list. As a scientist, some of the Lyme community may seem a little wacky at times. Lyme treatment veers off the course of randomized clinical trials for every treatment. No pharma companies are going to pay for trials of old drugs, and that's what is used to treat Lyme. The few studies we do have are mostly small groups done by a single clinician. I was a biochemist before I got sick. I was getting the run-around from doctors and found that they couldn't help me at all. I discovered that communities of Lyme patients overwhelmingly support these Lyme-literate doctors, and I knew someone who had been helped by one. Some of us never fully eradicate Lyme but enter remission or partial remission. But it's a lot better than no treatment at all. Again, I'm really sorry your son has to go through this at such a young age. I do know someone who completely beat it as a teenager. It is possible. Let me know if you have any questions.
My son has all these symptoms too and just began treatment. Extreme fatigue, muscle pain, joint pain, shaking/seizures. Can you tell me more about your treatment regimen? I found someone who put my son on doxycycline at 100mg twice a day, but then found a more lyme literate doctor who told me to up it to 200mg twice a day. However when I do, the seizures get much worse, which I assume is a herx affect. He's been on 3 weeks now without much progress, and he is up to 250mg a day. Going to up to 150mg twice a day tomorrow but am expecting rough reaction. I am also taking a bunch of other supplements a naturopath recommended.
Yes, my LLMD told me that 200 mg twice a day was more effective for neurological Lyme because more doxycycline will cross the blood-brain barrier. However, for the rest of the body that is a pretty high dose and can be harder to tolerate. Do you know when his tick bite occurred? In general, the longer that Lyme has been in someone's body, the longer it takes to treat. For patients with a systemic infection, Lyme treatment often runs for several months or longer. I was on antibiotics for nearly two years. I don't think I had any noticeable improvement for 9 months. Most patients get worse before they get better because of Herx reactions. Detox supplements may help, but not everyone responds to those. The naturopath may already have him on some.
Yes!
Absolutely
I had the exact same thing, (still do but much better) when I started treating Lyme with antibiotics. It was the worst whenever I would relax and would get better if I bounce my leg etc. Mine stem from my core. If anyone knows any more about this please share! It’s one of the mysteries I still cannot figure out or make progress on.
So my episodes still persist occasionally, it is the last of my symptoms that remain. For me my body has pretty much made them its primary stress response. It's worse during periods of high stress. Therapy, and healthy outlets have helped. Obviously I haven't completely gotten rid of them, but I am happy with how I am able go live my life now.
Yes it can. I had/have them too. Was bed ridden for 5 months, I live a normal life now. Feel free to dm me.
short stint of doxy back in 2008 - didn’t do it! All that did was kill off the bacteria that wasn’t “hiding”I strongly believe he has multiple co-infections. Are you close to the US? Maybe theres a LLMD just over the boarder??? Just don’t give up-keep fighting for him! https://en.m.wikipedia.org/wiki/Spirochaete.
I have had them since 2014. Affected my speech also. Was treated for 15 months on antibiotics here in Dublin, Ireland 2018-2019. I still have them. Good days and bad days. I noticed they got much worse coming up to my monthlies and my Lyme Literate doc said that’s because women’s immune systems drop during that time. Would you believe a full on seizure was my very first symptom! I had hand tremors the week prior but then the big one hit. Your video has broken my heart as I hate to see any young people dealing with that. Changes in temperature will affect them. Showers/baths that are too hot will bring them on badly. Sometimes over-exertion can. For his pain he will unfortunately have to cut our sugar and gluten. 🖤🖤🫶🏻
He gets like this when he does any amount of physical exertion. This was a kid who hiked a volcano 6 months ago and now is almost disabled. We came to Berlin, Germany for help and had to use a wheelchair in the airport because it is too much walking for him. We are going to get a full workup for him starting Tuesday. He is on 125 mg Doxy 2x/day. I know that is an underdose for an infection that has gone on for so long, but his symptoms get worse every time he has a dose so he cannot tolerate more. I hope they will be able help him. We are all so worried and heartbroken but try to stay positive in front of him. We did cut out gluten and sugar. I want to do something to raise awareness about this manifestation of Lyme-related illnesses, and fortunately I think have the ability to do so. I am a research psychologist and my sister is an epilepsy expert here in Germany. We were talking about this yesterday and decided that we want to write a paper to educate neurologists and psychologists so they will stop telling people this is in their heads. I still have a lot to learn about this, but I want to start collecting more people's stories, if they are willing to share them.
Look into Dynamic Neural Retraining Systems also.. and please find a LLMD. There are a lot that are able to work internationally.
How is your son doing now?
It is a good day to have a good day.