They say that good things come to those who wait. I'd be ecstatic to replace "good" with "progressively better." In retrospect, knowing what I know now and owning the perceptions of medicine that I do now, every few months for the last 2 years has pretty much equated to another doctor but also another stepping stone. Of course, when I have that highly-anticipated first appointment, expectations are rarely muted in my head. I accept open auditions for the title of Savior, and although I stay relatively centered, I inject optimism into my hopes for a swift recovery and give my expectations an irrational erection.
In retrospect, I may or not have been fooling myself. Some may argue optimism is a necessary prerequisite to recovery from a chronic illness where the patient is all too often in the driver's seat. I think this is true on some level. But what I mean is this: each doctor has (for the most part) taught me something new, and my cumulative experience with these doctors continues to adjust my demands for what I look for in the next. By now, I take pride in knowing within the first few hours of our interaction whether we will have working relationship (at the least) going forward. With that considered, the doctor that Dr. Bigelsen recommended to me may very well prove to be the rational cadence to my ongoing expansion and contraction of expectations.
In my last post, I talked about how Dr. B was becoming really frustrated with my case and wanted to outsource a second opinion. This doc trained under Dr. B for over 10 years. He has a really good understanding of biochemistry too and has worked with cancer research in the past. When I was in the waiting room and saw his apothecary of Staufen-Pharma nosodes, I couldn't help shouting "Staufen!" to his nurse. She rolled her eyes at my childlike ebullience but agreed, "Yes all homeopathics in this office." That was besides the point. I know that these particular homeopathics are only sold in Germany. I've yet to see a doc in the U.S. that sells them.
So you can already see why I am not authorized to release his name, and I immediately recalled Dr. B saying "He's a spook even in his own office. No one really knows what he does."
He listened to my story and said immediately that he agreed with all the stuff that Dr. Allen and Dr. B came up with (ANS being my main issue), but he was much more focused on why stem cells and neural therapy haven't been sufficing to redress that dysfunction. He really zoomed in on cortisol levels. At first that turned me off, because I thought he was just gonna tell me to go on hormone replacement therapy like so many other "integrative MDs" but instead he drew out diagrams explaining why hypoglycemia (due to gut dysfunction) and cortisol demands suffer from a negative feedback loop. When glucose levels drop, insulin spikes and we develop insulin resistance. Although this is more traditionally seen in diabetes, this is definitely occurring on some level in CFIDS patients too. When insulin resistance develops, insulin levels rise, blood glucose drops, and our evolutionary adaption is for the brain to be "shocked" into releasing cortisol to rebalance glucose levels. However, if this cycle continues, there's no escape route for cortisol demand. Add in the fact that leaky gut leads to adverse antigens being released into the bloodstream and hence, triggers more cortisol release through the HPA stress response, it really makes sense now why the HPA axis is so difficult to repair. He also explained why I have inflammation in my joints in the last year: the cortisol demand begins robbing glucose from muscles, joints, and tendons. Voila.
I used to think that if you identified the primary cause, you could ignore all the downstream stuff. In the case of cortisol, fixing the primary cause by taking brain stem cells is analogous to keeping a person from not drowning in a sand pit. In this case, the sand pit is the gut.
He then looked at my blood. Although he trained with Dr. B, he is an artist with this in his own way. He pointed out viral and bacterial forms that Dr. B didn't really focus on, and also zoomed in on qualities of distinct WBCs. Without looking at any of my WBC lab results, he could tell my neutrophils are fried and lots of monocytes (clean-up sites present until end of infections). Like Dr. B, he saw a lot of platelet formation (inflammatory markers), but also saw eosinophils having an autoimmune reaction to the platelets. Of course, it was really amazing how proficient he was at this and the amount of information he gleaned, but what blew me away was how he didn't all these out-of-whack inflammatory markers distract him from the "so what." He said with conviction that these immune barometers are secondary to the ANS dysfunction. Without normal cortisol production, there is virtually no check on immunity. No wonder Ampligen patients relapse after they get off the drug.
When he looked at the supplements I was taking, he said I was for the most part doing all the right things, but it was immediately clear to him why they weren't working. First of all, they are entirely fed via oral route. Gut dysfunction makes the oral route equally impaired at worst and incredibly inefficient at best. First plan of action: IVs to gain some traction and injections of my wisdom tooth areas with Pleo Art A and Pleo Art U.
After an oxidation IV (vit C and h202), we did IV myers cocktail and IV amino acids. I haven't had the amount of energy I've had in the last two days for a very long time. Immediately after the IV, Doc looked at my blood and said "viral load down 50%, bacterial forms gone." You'd think any doctor worth his salt would be complacent with this, but he shifted gears to my red blood cells and their thicker-than-normal cell walls. "Your red cells deteriorated significantly after 5 hours, composted by multiple fungal and bacterial forms and indicating that the toxicity is hidden in in the cellular membranes. Your ability to respond to my therapies is compromised by this toxic load." He didn't get overexcited with the initial benefits of his therapy and, instead, focused on what's holding them back from working better. He said I'll need to be on a long-term Muc and Nigersan to open up the transport membrane permeability again. For the last year, I've been trying to convince my doctors that opening up these membrane gates is a lynchpin to fixing my mitochondrial issues, but none of them had any idea what to do about it. Dr. Myhill has a great test to identify blocks but her treatment recommendations are shoddy at best. The fact that he identified this by looking at the blood and then has a clear plan of action to address this blew me away.
By the end appointment #2, he'd dissolved any suspicions about him feeding me IVs and hormones under a "managed-care model" just to stuff his pockets. His therapies may be expensive and different from Dr. B's, but like Dr. B, he has already convinced me that he won't prescribe anything twice which doesn't show immediate results in the blood the first time. Dr. B trusts him so much that he is handing my case over to him for the next few months. That speaks volumes to Dr. B's lack of ego and dedication to his patients' welfare, and needless to say, that's an epic vote of confidence for this doc.
Next appointment: more neural therapy and cranial to reset the autonomic nervous system, more IVs--possibly adding Sanum to the mix.
In retrospect, I may or not have been fooling myself. Some may argue optimism is a necessary prerequisite to recovery from a chronic illness where the patient is all too often in the driver's seat. I think this is true on some level. But what I mean is this: each doctor has (for the most part) taught me something new, and my cumulative experience with these doctors continues to adjust my demands for what I look for in the next. By now, I take pride in knowing within the first few hours of our interaction whether we will have working relationship (at the least) going forward. With that considered, the doctor that Dr. Bigelsen recommended to me may very well prove to be the rational cadence to my ongoing expansion and contraction of expectations.
In my last post, I talked about how Dr. B was becoming really frustrated with my case and wanted to outsource a second opinion. This doc trained under Dr. B for over 10 years. He has a really good understanding of biochemistry too and has worked with cancer research in the past. When I was in the waiting room and saw his apothecary of Staufen-Pharma nosodes, I couldn't help shouting "Staufen!" to his nurse. She rolled her eyes at my childlike ebullience but agreed, "Yes all homeopathics in this office." That was besides the point. I know that these particular homeopathics are only sold in Germany. I've yet to see a doc in the U.S. that sells them.
So you can already see why I am not authorized to release his name, and I immediately recalled Dr. B saying "He's a spook even in his own office. No one really knows what he does."
He listened to my story and said immediately that he agreed with all the stuff that Dr. Allen and Dr. B came up with (ANS being my main issue), but he was much more focused on why stem cells and neural therapy haven't been sufficing to redress that dysfunction. He really zoomed in on cortisol levels. At first that turned me off, because I thought he was just gonna tell me to go on hormone replacement therapy like so many other "integrative MDs" but instead he drew out diagrams explaining why hypoglycemia (due to gut dysfunction) and cortisol demands suffer from a negative feedback loop. When glucose levels drop, insulin spikes and we develop insulin resistance. Although this is more traditionally seen in diabetes, this is definitely occurring on some level in CFIDS patients too. When insulin resistance develops, insulin levels rise, blood glucose drops, and our evolutionary adaption is for the brain to be "shocked" into releasing cortisol to rebalance glucose levels. However, if this cycle continues, there's no escape route for cortisol demand. Add in the fact that leaky gut leads to adverse antigens being released into the bloodstream and hence, triggers more cortisol release through the HPA stress response, it really makes sense now why the HPA axis is so difficult to repair. He also explained why I have inflammation in my joints in the last year: the cortisol demand begins robbing glucose from muscles, joints, and tendons. Voila.
I used to think that if you identified the primary cause, you could ignore all the downstream stuff. In the case of cortisol, fixing the primary cause by taking brain stem cells is analogous to keeping a person from not drowning in a sand pit. In this case, the sand pit is the gut.
He then looked at my blood. Although he trained with Dr. B, he is an artist with this in his own way. He pointed out viral and bacterial forms that Dr. B didn't really focus on, and also zoomed in on qualities of distinct WBCs. Without looking at any of my WBC lab results, he could tell my neutrophils are fried and lots of monocytes (clean-up sites present until end of infections). Like Dr. B, he saw a lot of platelet formation (inflammatory markers), but also saw eosinophils having an autoimmune reaction to the platelets. Of course, it was really amazing how proficient he was at this and the amount of information he gleaned, but what blew me away was how he didn't all these out-of-whack inflammatory markers distract him from the "so what." He said with conviction that these immune barometers are secondary to the ANS dysfunction. Without normal cortisol production, there is virtually no check on immunity. No wonder Ampligen patients relapse after they get off the drug.
When he looked at the supplements I was taking, he said I was for the most part doing all the right things, but it was immediately clear to him why they weren't working. First of all, they are entirely fed via oral route. Gut dysfunction makes the oral route equally impaired at worst and incredibly inefficient at best. First plan of action: IVs to gain some traction and injections of my wisdom tooth areas with Pleo Art A and Pleo Art U.
After an oxidation IV (vit C and h202), we did IV myers cocktail and IV amino acids. I haven't had the amount of energy I've had in the last two days for a very long time. Immediately after the IV, Doc looked at my blood and said "viral load down 50%, bacterial forms gone." You'd think any doctor worth his salt would be complacent with this, but he shifted gears to my red blood cells and their thicker-than-normal cell walls. "Your red cells deteriorated significantly after 5 hours, composted by multiple fungal and bacterial forms and indicating that the toxicity is hidden in in the cellular membranes. Your ability to respond to my therapies is compromised by this toxic load." He didn't get overexcited with the initial benefits of his therapy and, instead, focused on what's holding them back from working better. He said I'll need to be on a long-term Muc and Nigersan to open up the transport membrane permeability again. For the last year, I've been trying to convince my doctors that opening up these membrane gates is a lynchpin to fixing my mitochondrial issues, but none of them had any idea what to do about it. Dr. Myhill has a great test to identify blocks but her treatment recommendations are shoddy at best. The fact that he identified this by looking at the blood and then has a clear plan of action to address this blew me away.
By the end appointment #2, he'd dissolved any suspicions about him feeding me IVs and hormones under a "managed-care model" just to stuff his pockets. His therapies may be expensive and different from Dr. B's, but like Dr. B, he has already convinced me that he won't prescribe anything twice which doesn't show immediate results in the blood the first time. Dr. B trusts him so much that he is handing my case over to him for the next few months. That speaks volumes to Dr. B's lack of ego and dedication to his patients' welfare, and needless to say, that's an epic vote of confidence for this doc.
Next appointment: more neural therapy and cranial to reset the autonomic nervous system, more IVs--possibly adding Sanum to the mix.