So I got my latest blood test results, neutrophils are now down to 1.29 and prolactin is around 500.
I did some research and it seems clinically high prolactin doesn't always mean high prolactin. It can often mean high macro prolactin and normal prolactin. Prolactin is made up of two types of prolactin, macro and prolactin. Bizarrely prolactin seems to be referred to as a big big prolactin....not sure waht that is all about!
My brain fogs been almost none existent since I re-introduced 80mg egcg in the morning. Very thankful about this, as my new project at work is pretty demanding and a cold hit me on thursday and I became incredibly tired. But it didn't effect my ability to think.
However the neutrophil drop worries me greatly. Once I got 1000 and if I ever got 500 I am in real trouble, as my body will get an infection and I suspect that will cause a trip to A&E and another hefty course of antibiotics, which may or may not worsen my ME, but is sure to make me pretty sick.
I am still chasing furhter diagnoses. Such as igg subclass defiency.
One interesting thing my doctor did was get an ESR done! And what would you know I am a still a 2! After 5.5 years! Amazing...so if that's indicative of ME which New York doctors say it is, then my ME hasn't changed one bit it seems!
Symptom wise I am doing better than I was but am definitely worse than I was before the flu vaccine. I felt pretty brilliant before the flu vaccine to be honest. I suspect another 2-3 month recovery is ahead of me. Which means covid isn't really the culprit and that the vaccines and probably the immune response are what do the damage and cause the ME to flare. I guess I am just extremely lucky I can still recover.
So the neutrophils...my most pressing issue. I had a theory prolactin issues and neutrophil issues might be caused by high intake of beta glucan. The idea being beta glucan directly feeds neutrophils so if they are being used up fighting bacterial infections and the body is unable to replace them at the same pace...it would make sense they are an issue. As for the prolactin, beta glucans have been proven to increase secretions of prolactin, so again this might be teh cause of my issues.
But when I titrated down to a non existent/tiny dose, I found that after the flu vaccine ebv and other viruses must have re-activated, as 2 weeks after the flu vaccine my symptoms were still grotty. So I went back on the oat bran and then experienced a rather unpleasant 10 day herx, flu like symptoms essentially with tiredness and difficulty staying awake. I had a terrible cold at the time too. But I am convinced all related.
So if I stop beta glucans, my ME will get worse. I am therefore going to try 1 teaspoon a day and hope (pray) that my neutrophils can recover if I do this. I may have to take an even lower "drip" dose, of 1 quarter teaspoon.
I also think the Dr Mercola Probiotics and SOlar ray probiotics combined (140 billion cfu a day) are having a huge impact on my energy levels, strength and to a lesser extent brain fog.
My main issue is I will have to get a moderna booster next month, which will mean a further set back and another 3 months to recover. I can't help but feel like I am living with far fewer symptoms that I've had in ages on slightly borrowed time. If I can just get through the next 5 years, financially my life will be much easier.
I did some research and it seems clinically high prolactin doesn't always mean high prolactin. It can often mean high macro prolactin and normal prolactin. Prolactin is made up of two types of prolactin, macro and prolactin. Bizarrely prolactin seems to be referred to as a big big prolactin....not sure waht that is all about!
My brain fogs been almost none existent since I re-introduced 80mg egcg in the morning. Very thankful about this, as my new project at work is pretty demanding and a cold hit me on thursday and I became incredibly tired. But it didn't effect my ability to think.
However the neutrophil drop worries me greatly. Once I got 1000 and if I ever got 500 I am in real trouble, as my body will get an infection and I suspect that will cause a trip to A&E and another hefty course of antibiotics, which may or may not worsen my ME, but is sure to make me pretty sick.
I am still chasing furhter diagnoses. Such as igg subclass defiency.
One interesting thing my doctor did was get an ESR done! And what would you know I am a still a 2! After 5.5 years! Amazing...so if that's indicative of ME which New York doctors say it is, then my ME hasn't changed one bit it seems!
Symptom wise I am doing better than I was but am definitely worse than I was before the flu vaccine. I felt pretty brilliant before the flu vaccine to be honest. I suspect another 2-3 month recovery is ahead of me. Which means covid isn't really the culprit and that the vaccines and probably the immune response are what do the damage and cause the ME to flare. I guess I am just extremely lucky I can still recover.
So the neutrophils...my most pressing issue. I had a theory prolactin issues and neutrophil issues might be caused by high intake of beta glucan. The idea being beta glucan directly feeds neutrophils so if they are being used up fighting bacterial infections and the body is unable to replace them at the same pace...it would make sense they are an issue. As for the prolactin, beta glucans have been proven to increase secretions of prolactin, so again this might be teh cause of my issues.
But when I titrated down to a non existent/tiny dose, I found that after the flu vaccine ebv and other viruses must have re-activated, as 2 weeks after the flu vaccine my symptoms were still grotty. So I went back on the oat bran and then experienced a rather unpleasant 10 day herx, flu like symptoms essentially with tiredness and difficulty staying awake. I had a terrible cold at the time too. But I am convinced all related.
So if I stop beta glucans, my ME will get worse. I am therefore going to try 1 teaspoon a day and hope (pray) that my neutrophils can recover if I do this. I may have to take an even lower "drip" dose, of 1 quarter teaspoon.
I also think the Dr Mercola Probiotics and SOlar ray probiotics combined (140 billion cfu a day) are having a huge impact on my energy levels, strength and to a lesser extent brain fog.
My main issue is I will have to get a moderna booster next month, which will mean a further set back and another 3 months to recover. I can't help but feel like I am living with far fewer symptoms that I've had in ages on slightly borrowed time. If I can just get through the next 5 years, financially my life will be much easier.