• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

My last consultation with Dr. Kenny De Meirleir

bertiedog

Senior Member
Messages
1,739
Location
South East England, UK
@stetson28 After many months taking the Cowden herbs I think I did get benefits because my ability to walk daily really improved and for well over the past year and a half I have managed an average of 8300 steps daily. Before the herbs it was a lot lower, more like an average of 6500 or less. This past week I have been doing 9000 steps or more daily.

Last winter I had a terrible time with my immune system. I kept picking up viruses and infections mostly in my throat but having my normal dose of thyroxine taken away from me by an Endocrinologist that I saw last November was the reason this happened I believe because physically I began to suffer within a month of stopping just 0.25 mcg thyroxine. (The Endo reckoned I was on too much thyroid medication going by the tick box chart they use in our NHS depending on your BMI).

I was off it for nearly 8 weeks and this was sufficient for not only my energy and nervous system to be hit but also my immune system. It has taken until late Spring for me to get back to where I was before all this happened. I did stay on my normal 2 grains of dessicated thyroid medication and nothing else was changed so it was quite unexpected that the withdrawal of that tiny bit of thyroxine had such a profoundly negative effect on my health. Thankfully the way I was feeling was reflected in my blood tests with the level of T4 dropping from 14.7 to 8 in just 7 weeks. Once I got the blood test results I restarted the thyroxine but as mentioned above it took many months for things to improve and I have also needed weekly acupuncture sessions to start feeling very well again.

Migraines still plague me but the Acupuncture helps with those too.

I actually don't think that Lyme is an issue for me and to be honest I am not convinced it ever was but I definitely had lots of issues with viruses which was also reflected in blood tests about 4 or 5 years ago.

Pam
 

stetson28

If it aint broke don't fix it...but.
Messages
49
Location
Richmond Virginia
Pam that's great that you were able to point to thyroid. Were you ever certain you had Lyme? Unfortunately I clearly am infested with it and babesia. I believe my thyroid results always come back normal but then again what is normal because I thought both your 14.7 and 8 for t4 were in range but obviously giving you symptoms.