Caitlin
Member
- Joined
- Aug 1, 2019
- Messages
- 59
Hi All,
I wanted to reach out and see if anyone could help me with some physiological “sleuthing.”
I am a 41-year-old female and I have been living in a state of hypoxia and respiratory alkalosis for about ten years. My muscles are permanently weak and as a result of chronic hyperventilation, and not enough oxygen is reaching my cells (per the Bohr Effect). I’m weak and out of breath all the time.
I don’t know how or why this started, but when it began when I was on an extremely low-carb Paleo diet for about 2 weeks. I don't know if that is causation or correlation or just coincidence. And in the years prior to this occurring, I was on birth control and Aldactone (a drug that can lower potassium) for about ten years for Polycystic Ovarian Syndrome. My hypoxia and chronic hyperventilation started in 2011, and I have been living with it ever since. I have seen countless doctors about it, but no one can figure it out. Myself included.
I don’t have a thyroid anymore (it was taken out in 2011), although my symptoms started before shortly before it was taken out.
In addition to the hypoxia, I have really bad acid reflux and a vagal neuropathy. Despite the fact that I have eaten a healthful, low inflammation diet for years (gluten free, mostly paleo-ish) the otolarynologist told me it was some of the worst reflux she has even seen. Also, my hair falls out when I brush it, and I can also see that food isn’t properly digested in my stool. I burp constantly. My legs itch a lot and there's no rash. I have been told that reflux can be counterintuitive and the result of not having enough acid in the stomach. That said, I have tried supplementing with HCL on several occasions and that hasn’t worked either. So I don’t know what to think.
I have tried adding more salt to my diet, thinking that this issue is tied to my thyroid and an electrolyte imbalance, but to no avail. I increased my salt intake to 2 tsp a day and felt much worse. I’ve also tried Buteyko breathing. I practiced Buteyko religiously for several months, thinking that that would finally heal me, but as hard as I tried I couldn’t alter the hyperventilation and bring up my CP.
The one thing that has helped me is an African plant medicine called iboga, from which ibogaine comes. I tried this plant out of desperation and frustration, and it was miraculous. That said, the healing effects lasted only about 1-2 weeks and then the hyperventilation and respiratory alkalosis returned. During every Iboga ceremony I experienced intense burping where trapped air exited my body by what seemed like the liter. The belches were dragon-like and painful. But once the 4-5 hours of constant burping were over, I could breathe again, and oxygen flooded to the rest of my body. My strength returned too. I felt new again. After each iboga ceremony I would feel great, but my respiratory problems would return within two weeks. Each time I did iboga the same thing would happen.
Because iboga/ibogaine is a schedule 1 drug, it has not been heavily studied. I have been told that iboga is a calcium channel blocker, and that it inhibits hERG channels, whatever that means. I have had my electrolytes tested throughout the years, and haven’t found any anomalies. Maybe there is one that hasn't been tested. According to the ENT, I don't have a hiatal hernia either.
I have been on Gabapentin and Amitryptiline for several months per the otolaryngologist’s instructions (because of the vagal neuropathy). I was also put on an H2 blocker, Zantac. After a few weeks I got better. My hyperventilation improved and my CO2 levels rose a little bit. I was so excited! But then things went downhill again as soon as they improved.
People seem extremely intelligent in this forum and perhaps something I have written above sparks a thought or an idea or something that I can explore. Can you think of any tests that I can have done that could provide some insight? Or any obscure syndrome that could be causing this? If you have any insight – any at all – I would love to hear it. I am so sick of being sick and want to feel better. I am surviving, but I am not living. Both doctors I have seen have not heard of the Bohr effect, and don't know how to move forward with my situation. Perhaps someone here could offer a tip or the smallest bit of insight that could help me.
Thanks!
Caitlin
I wanted to reach out and see if anyone could help me with some physiological “sleuthing.”
I am a 41-year-old female and I have been living in a state of hypoxia and respiratory alkalosis for about ten years. My muscles are permanently weak and as a result of chronic hyperventilation, and not enough oxygen is reaching my cells (per the Bohr Effect). I’m weak and out of breath all the time.
I don’t know how or why this started, but when it began when I was on an extremely low-carb Paleo diet for about 2 weeks. I don't know if that is causation or correlation or just coincidence. And in the years prior to this occurring, I was on birth control and Aldactone (a drug that can lower potassium) for about ten years for Polycystic Ovarian Syndrome. My hypoxia and chronic hyperventilation started in 2011, and I have been living with it ever since. I have seen countless doctors about it, but no one can figure it out. Myself included.
I don’t have a thyroid anymore (it was taken out in 2011), although my symptoms started before shortly before it was taken out.
In addition to the hypoxia, I have really bad acid reflux and a vagal neuropathy. Despite the fact that I have eaten a healthful, low inflammation diet for years (gluten free, mostly paleo-ish) the otolarynologist told me it was some of the worst reflux she has even seen. Also, my hair falls out when I brush it, and I can also see that food isn’t properly digested in my stool. I burp constantly. My legs itch a lot and there's no rash. I have been told that reflux can be counterintuitive and the result of not having enough acid in the stomach. That said, I have tried supplementing with HCL on several occasions and that hasn’t worked either. So I don’t know what to think.
I have tried adding more salt to my diet, thinking that this issue is tied to my thyroid and an electrolyte imbalance, but to no avail. I increased my salt intake to 2 tsp a day and felt much worse. I’ve also tried Buteyko breathing. I practiced Buteyko religiously for several months, thinking that that would finally heal me, but as hard as I tried I couldn’t alter the hyperventilation and bring up my CP.
The one thing that has helped me is an African plant medicine called iboga, from which ibogaine comes. I tried this plant out of desperation and frustration, and it was miraculous. That said, the healing effects lasted only about 1-2 weeks and then the hyperventilation and respiratory alkalosis returned. During every Iboga ceremony I experienced intense burping where trapped air exited my body by what seemed like the liter. The belches were dragon-like and painful. But once the 4-5 hours of constant burping were over, I could breathe again, and oxygen flooded to the rest of my body. My strength returned too. I felt new again. After each iboga ceremony I would feel great, but my respiratory problems would return within two weeks. Each time I did iboga the same thing would happen.
Because iboga/ibogaine is a schedule 1 drug, it has not been heavily studied. I have been told that iboga is a calcium channel blocker, and that it inhibits hERG channels, whatever that means. I have had my electrolytes tested throughout the years, and haven’t found any anomalies. Maybe there is one that hasn't been tested. According to the ENT, I don't have a hiatal hernia either.
I have been on Gabapentin and Amitryptiline for several months per the otolaryngologist’s instructions (because of the vagal neuropathy). I was also put on an H2 blocker, Zantac. After a few weeks I got better. My hyperventilation improved and my CO2 levels rose a little bit. I was so excited! But then things went downhill again as soon as they improved.
People seem extremely intelligent in this forum and perhaps something I have written above sparks a thought or an idea or something that I can explore. Can you think of any tests that I can have done that could provide some insight? Or any obscure syndrome that could be causing this? If you have any insight – any at all – I would love to hear it. I am so sick of being sick and want to feel better. I am surviving, but I am not living. Both doctors I have seen have not heard of the Bohr effect, and don't know how to move forward with my situation. Perhaps someone here could offer a tip or the smallest bit of insight that could help me.
Thanks!
Caitlin