during long haul I developed a lyme infection and mycoplasma pnumonie. I CANNOT go outside in any humidity.my body swells up internally, I lose control of my breathing mechanically, nose and throat clench up/get inflamed, tongue tingles. 19 months and just starting these drugs. praying and prayig they work. I have not been able to enjoy a nice walk outdoors in a year and a half. bc of this. my lungs themelves are fine yet I have all sorts of truble. can feel the vascular problems, have pooling in my leg veins as they pop out (ugly), and my gut is very messed up too. thank you for the hope. I just want my normal life back and a chance to REBUILD myself.
@@neverseenblue11 Can’t think of anything specifically but the updates on your progress and experience of the meds’ is really helpful - I don’t think our Docs would prescribe Maraviroc for LC & at the moment it’s difficult to get the relevant blood tests done - we could only get them done in Spain once Dr P’s lab there is up and running - it’s really hard to evaluate what helps when we are all trying so many different things - has your treatment protocol made much of a dent in your hr and pots symptoms?
@@user-iz1lh6ji6z Hi David - gd 2 hear from u & glad the yoga is helping - I can move around a bit better but he still stupidly high if I try and do ordinary tasks - have u started the ivabradine?
@@user-iz1lh6ji6zYes I was prescribed 5mg twice a day - in fact I only take 2.5mg twice a day - I could up the dose but had the sense that if my system is to correct itself less may be better as I didn't want to get a false sense of security if that makes sense!
@@user-iz1lh6ji6z It certainly is a minefield David - from what I can make out the effect of ivabradine is roughly 11 hrs - what is known about pots is that exercise helps but....tricky when u can't stand up - it's certainly enabled me to move better and moving better helps altho need to be super careful to pace and not overdo it!! If your BP is low extra salt can help? There's some helpful stuff on the pots UK website if u haven't already found it - I don't think there is a magic treatment for this as we have no way of knowing what went so horribly wrong - I've travelled the world and had all sorts of vaccinations with no probs before - you take care this is just awful!! X
Hi Samantha, I commented on an earlier video of yours and have run into this update. I'm wondering where you got a list of doctors to prescribe an monitor your progress on Dr Patterson's protocol. I'm in San Diego, CA. It would be best to find someone local but I'm willing to travel if needed.
Old comment. But if anyone else is looking for a doctor that works with Dr Bruce Patterson team, I’ve used Dr Kara Nakisbeni. She will prescribe all their stuff and is clever with her own adjunct treatments, extremely knowledgeable, open minded and has worked with hundreds of long haulers at this point. I’m also in SD and she works with me via telehealth.
I’m on Patterson’s program. Day 2. Just curious if you only took maraviroc and statin or ?? Ivermectin? Thank you. My symptoms of head pressure, stomach kind of churning, weak feeling seem to be activated ever time I eat. You?
I heard you mention veins? I've had my veins starting to appear all throughout my body. Mainly on my chest and legs very green and vibrant. Was this by chance a symptom of yours at all? If so, how has this protocol helped you with that? I'm getting ready to hopefully start the Maraviroc. I'm currently on the statin. No real changes yet. Maybe a slight help in my breathing and only at times. Did you do an anti inflammatory diet with treatment as well? I actually have the opposite, I have bradycardia. I'm hoping it doesn't further drop my heart rate. Thank you so much for doing videos like this. I love seeing people help people! Lord knows we're desperate at this point for any kind of help or relief. I'm going to search any other videos and see if you have any more recent ones. Thank you in advance for any replies and again your videos! Glad you're feeling much better that's so great!
Did you have any withdrawal symptoms when coming off maraviroc and pravastatin? It's my 4th day off treatment; I feel tired, although more relaxed, but tired. I can't find anything online regarding withdrawal symptoms
Not one person that i know of has had withdrawals. I did this protocol for 5 months and it did nothing for me and many many of other people that were in my group. If they really work i hope ur in that very small% of people that seem to have some relief.
Hi there my breathing has been bad for so long, can I please just ask how bad was your breathing?? I feel like breathing through cotton and like i can't take a deep breath, was yours any similar?? Thank you in advance and wish you all the best
@@neverseenblue11 First off thank you so much for the reply, that's how i feel all the time and it's been going on for months now, it's always hard to fall asleep or stay asleep. When i wake up in the morning i feel like someone beat me up with a bat, like everything hurts and i have no energy i'm just tired all day. Can you please tell me what really helped you?? Was it the Maraviroc? And how long have you been bad until you started improving? Thank you so much !
I'm on my 20th month as a long hauler. I didnt start seeing major improvement until last month. Maraviroc, statins, a short stint of predisone and diet are what helped the most. I'm still not my old self and still have days where I'm nauseous and my HR is up a bit, but nothing like it was!! My sleep has gotten better but I still wake up in the night sometimes. The breathing issues are about 98% better, my energy has come back for the most part and I no longer have swallowing issues.
@@neverseenblue11 Oh my god, i'm so glad for you, i feel like i'm living in hell for the last 15 months. Tried every single thing nothing worked except the meds you just stated i havent tried those. How do i get Maraviroc? My doctor is a hard ass no way he prescribes it to me, and by the way how much does it cost?? I'm sorry i'm bothering you with this questions i'm just so desperate i feel like i lost my life.
It's hard to get since most doctors wont prescribe an HIV med. A month supply of maraviroc is 2k. There is financial assistance you can get if you dont have insurance. And dont worry about the questions, because I've been there.. just desperate for help.
Glad you're feeling better Samantha. Gives hope to other long covid sufferers. Thanks for making the vids. 🇬🇧
during long haul I developed a lyme infection and mycoplasma pnumonie. I CANNOT go outside in any humidity.my body swells up internally, I lose control of my breathing mechanically, nose and throat clench up/get inflamed, tongue tingles. 19 months and just starting these drugs. praying and prayig they work. I have not been able to enjoy a nice walk outdoors in a year and a half. bc of this. my lungs themelves are fine yet I have all sorts of truble. can feel the vascular problems, have pooling in my leg veins as they pop out (ugly), and my gut is very messed up too.
thank you for the hope. I just want my normal life back and a chance to REBUILD myself.
Any updates?
I too am interested hoe you made out. Please let us know. Thank you!
If you’ve overcome chronic fatigue, that’s HUGE!
Thanks very much Samantha and delighted you are doing well - the videos are super helpful x
Thanks! Let me know if there are any other topics I should cover.
@@neverseenblue11 Can’t think of anything specifically but the updates on your progress and experience of the meds’ is really helpful - I don’t think our Docs would prescribe Maraviroc for LC & at the moment it’s difficult to get the relevant blood tests done - we could only get them done in Spain once Dr P’s lab there is up and running - it’s really hard to evaluate what helps when we are all trying so many different things - has your treatment protocol made much of a dent in your hr and pots symptoms?
@@user-iz1lh6ji6z Hi David - gd 2 hear from u & glad the yoga is helping - I can move around a bit better but he still stupidly high if I try and do ordinary tasks - have u started the ivabradine?
@@user-iz1lh6ji6zYes I was prescribed 5mg twice a day - in fact I only take 2.5mg twice a day - I could up the dose but had the sense that if my system is to correct itself less may be better as I didn't want to get a false sense of security if that makes sense!
@@user-iz1lh6ji6z It certainly is a minefield David - from what I can make out the effect of ivabradine is roughly 11 hrs - what is known about pots is that exercise helps but....tricky when u can't stand up - it's certainly enabled me to move better and moving better helps altho need to be super careful to pace and not overdo it!! If your BP is low extra salt can help? There's some helpful stuff on the pots UK website if u haven't already found it - I don't think there is a magic treatment for this as we have no way of knowing what went so horribly wrong - I've travelled the world and had all sorts of vaccinations with no probs before - you take care this is just awful!! X
What did you do to tackle the sleep issue, I’ve developed mild depression from covid which causes insomnia and poor sleep
Low dose melatonin really works for me. Something between 0.3 and 0.9 mg.
Hi Samantha, I commented on an earlier video of yours and have run into this update. I'm wondering where you got a list of doctors to prescribe an monitor your progress on Dr Patterson's protocol. I'm in San Diego, CA. It would be best to find someone local but I'm willing to travel if needed.
Old comment. But if anyone else is looking for a doctor that works with Dr Bruce Patterson team, I’ve used Dr Kara Nakisbeni. She will prescribe all their stuff and is clever with her own adjunct treatments, extremely knowledgeable, open minded and has worked with hundreds of long haulers at this point. I’m also in SD and she works with me via telehealth.
I’m on Patterson’s program. Day 2. Just curious if you only took maraviroc and statin or ?? Ivermectin? Thank you. My symptoms of head pressure, stomach kind of churning, weak feeling seem to be activated ever time I eat. You?
How's the program going for you now?
Please let us know how you made out on the program. Hopefully you're doing much better.
How are you now dude?
I heard you mention veins? I've had my veins starting to appear all throughout my body. Mainly on my chest and legs very green and vibrant. Was this by chance a symptom of yours at all? If so, how has this protocol helped you with that? I'm getting ready to hopefully start the Maraviroc. I'm currently on the statin. No real changes yet. Maybe a slight help in my breathing and only at times. Did you do an anti inflammatory diet with treatment as well? I actually have the opposite, I have bradycardia. I'm hoping it doesn't further drop my heart rate. Thank you so much for doing videos like this. I love seeing people help people! Lord knows we're desperate at this point for any kind of help or relief. I'm going to search any other videos and see if you have any more recent ones. Thank you in advance for any replies and again your videos! Glad you're feeling much better that's so great!
Did you have any withdrawal symptoms when coming off maraviroc and pravastatin? It's my 4th day off treatment; I feel tired, although more relaxed, but tired. I can't find anything online regarding withdrawal symptoms
Not one person that i know of has had withdrawals. I did this protocol for 5 months and it did nothing for me and many many of other people that were in my group. If they really work i hope ur in that very small% of people that seem to have some relief.
How can i ask more questions?
I have a lot of the similar issues
Did you have fatigue?
Hi there my breathing has been bad for so long, can I please just ask how bad was your breathing?? I feel like breathing through cotton and like i can't take a deep breath, was yours any similar?? Thank you in advance and wish you all the best
My breathing was very very bad. I felt like at times, I was breathing through a straw. I couldn't even sleep at night without an elevated pillow.
@@neverseenblue11 First off thank you so much for the reply, that's how i feel all the time and it's been going on for months now, it's always hard to fall asleep or stay asleep. When i wake up in the morning i feel like someone beat me up with a bat, like everything hurts and i have no energy i'm just tired all day. Can you please tell me what really helped you?? Was it the Maraviroc? And how long have you been bad until you started improving? Thank you so much !
I'm on my 20th month as a long hauler. I didnt start seeing major improvement until last month. Maraviroc, statins, a short stint of predisone and diet are what helped the most. I'm still not my old self and still have days where I'm nauseous and my HR is up a bit, but nothing like it was!! My sleep has gotten better but I still wake up in the night sometimes. The breathing issues are about 98% better, my energy has come back for the most part and I no longer have swallowing issues.
@@neverseenblue11 Oh my god, i'm so glad for you, i feel like i'm living in hell for the last 15 months. Tried every single thing nothing worked except the meds you just stated i havent tried those. How do i get Maraviroc? My doctor is a hard ass no way he prescribes it to me, and by the way how much does it cost?? I'm sorry i'm bothering you with this questions i'm just so desperate i feel like i lost my life.
It's hard to get since most doctors wont prescribe an HIV med. A month supply of maraviroc is 2k. There is financial assistance you can get if you dont have insurance. And dont worry about the questions, because I've been there.. just desperate for help.