Generally, doctors are strictly trained to follow established procedures, AMA accepted practices. We must not judge them harshly for following their training; it is mostly a safe way to approach problems.

Issues arise in such cases as yours where there is no clear path immediately indicated. Hopefully your hematologist will explore any avenue that shows promise. You always have the option of seeking a 2nd opinion. I have done so twice this past year, once paying off hugely, one still in process.

That does not mean that you cannot hold a view that is poorly received. All through the '80s I argued with doctors in defense of friends who were suffering terribly from shingles; I argued for chicken pox vaccinations. The argument would generally end when they adamantly declared that - if they had chicken pox as children - they were immune to the virus. I dropped the argument at that point since they had to see the ridiculousness of such an argument; a patient cannot be plagued by a virus to which they are immune.

I argued that the herpes zoster virus had obviously hibernated to the nerve system, myelin sheath and gone dormant until the aging body began to lose its immune responses. Thus the pain and skin disruption of shingles.

In the 90s a Japanese researcher experimented with a shingles vaccine and the result is history. While I can make no claim for the development of the vaccine, I still sort of claim credit as everything that I argued for years has proved to be true.

All of my doctors respect my views because I basically take charge of my own case - not to argue or be difficult, but to make suggestions and ask questions. My PCP will introduce me as 'a doctor' - which is ridiculous; but my son, an RN, says that most doctors appreciate patients that study and take charge of their own particular case.

Hang in there! Be patient - but persistent! :^) corsair9

I'm 63 and went through all the above before getting infusions from my hematologist which has worked so far. As a frequent blood donor I was able to well document the onset of anemia after two Pfizer shots. Doctors are unfortunately incentivized to tell you the shots are safe. I will never get another.

@logsohio I just came into this conversation...how is your husband feeling now? I knew back in 2021 after initial vaccines came out that there was a problem. I could actually date medical issues and labs back to the dates of the vaccine. For me it was more heart related. And people who I spoke to around the country also knew someone who began to have heart issues where there were none before. I currently have lupus and leukemia. I have not had a booster nor another vaccine. I got Covid in 2022 and was put on Paxlovid which was great! I had to stop leukemia meds while on it and I actually never went back on them! 6 months later I was diagnosed with systemic lupus! It seems to me that suddenly there has been an uptick of cancer AND lupus cases - all auto immune diseases. On other groups I see people are taking over 10 vaccines/boosters and I'm horrified!!! They keep saying I'm not showing immunity in my blood. However the question should be: Did you actually get Covid yet??? Maybe your husband needs an autoimmune booster of some sort to jog his body back into a "good" zone...with the lupus came 4 major food allergies (I am 69) critically low blood sodium they almost killed me, I became, and still am, highly anemic. I had restarted leukemia meds and started lupus meds at the same time in June of this year 2023. I believe they conflicted and I was overdosing on two meds with similar abilities. I finally found a top leukemia specialist who also has worked with lupus for over 20 years!!! I saw him once. He's at s medical conference this week. He is will be getting in touch with my lupus doc (rheumatologist) to discuss a Med that can potentially work for both! Right now I am starting my second lupus "flare" and it is not fun. I am currently taking methylfolate, iron and vitamin C to help bring my numbers up. Unfortunately I look ok on the outside (with the exception of losing hair in clumps) so I'm having a hard time getting family members to understand I am not well. My best friend keeps giving me hair tips..people don't realize that hair loss caused by disease can not be made better by combing your hair from the bottom up, changing shampoos, etc etc. It also is not my fault.
I wish you and husband well in the upcoming months and as far as Covid is concerned, wear a mask. Wash your hands with antibacterial liquid after you go shopping and just be smart and don't tempt fate !!