Wednesday, April 7, 2021

Blood Donation: Part Three

So what did we learn from this (and further research)

Your body is replacing blood cells all the time naturally.  In fact, I was curious and I looked it up - red blood cells are replaced every 120 days But white blood cells are replaced much more frequently - almost daily.  All white blood cells are derived from cells in the bone marrow known as hematopoietic stem cellsThe bone marrow then stores an estimated 80–90% of white blood cells. But some still circulate in the blood. 

It is these hematopoietic stem cells that are damaged in the first instance. These stem cells have mutations that may not allow the stem cell to turn into a normal functioning b cell / plasma cell (differentiate). The stem cells work fine for every other kind of White Blood Cell. They only have a mutation that effects differentiation B/ Plasma Cells. When the body calls for new b cells / plasma cells it calls up damaged stem cells and these stem cells can become clonal cells. The particular type of White Blood Cells that we have issues with are B cells: also known as B-lymphocytes, also known as Plasma B cells, these cells produce antibodies to help the immune system mount a response to infection.  There are like 7 different white blood cell types but MGUS people only have a defect with regard to the WBCs that are B cells / Plasma cells

So Dr. Kyle did help me figure some of this out... when he said that he doubted that plasma cells would be in the blood with a small MGUS. That gave me the hint that the white blood cells in the blood would be less than red. 

Googling it, I found out 

Most people will produce around 100 billion white blood cells every day. There are normally between 4,000 and 11,000 cells in every microliter of blood, although this can vary according to race.

 And, in fact

Plasma cells are not normally found in the blood circulation. Notably, B cells, the precursors of plasma cells, also undergo much of their early development in the bone marrow.   

Ok so now we are getting someplace, it would seem that in the first place... that blood donation is likely to have zero effect on B /Plasma cells. As this particular type of WBC is not in circulation anyway.  But, even if they were... losing a pint of blood is not going to effect your white blood count very much.  You have about 7 to 10 pints of blood in your body. Looking it up.. since there are about 4000 WB cells in 1 milliliter of blood, and a pint of blood  is 473 or 568 milliliters.... you probably will loose about 1,892,000 white blood cells in one pint of blood.  If we produce about 100 billion white blood cells daily well, it would seem the body might hardly notice a million cell loss.

So finally I think I have an answer. Blood donation will not effect the plasma cells / clone cells because they are "walled off" from the blood stream.

It does make sense. If you want to get a count of your clonal cells you cannot just test the blood. The only thing that will be in the blood are after effects of clonal cells, M-Protien,  immunoglobulins, and Light Chains. To see what is going with clonal cells you need to get a bone marrow biopsy. 

The B / Plasma cells will not react to blood donation but, they will react to viral or bacterial infection - when bacteria or viruses enter the body, some of the B cells will change into plasma cells. The plasma cells make antibodies to fight bacteria and viruses, to stop infection and disease.  There is a great chart on this link that gives a good idea -- Chart

Tuesday, April 6, 2021

Blood Donation: Part Two.

So I went to a Myeloma foundation and the person there tried to answer my question on her own. She did advise me to bring this up with my doctor but, as we saw in part one... that is a non-starter.

She stated:

Our bone marrow is constantly producing new hematopoietic cells to replenish the cells that are currently in circulation, working at their various jobs; red cells carry oxygen in the blood stream, various white blood cells fight infection and platelets help our blood clot if we get cut. Each different cell type has a different life span, but they all need to be replaced whether they live days or weeks.

Ok so far so good. 

I have trouble understanding why donating a physiologically safe amount of blood would cause abnormal stress on the bone marrow

So here is the problem. I have trouble understanding why they can't understand my concern and they simply NEVER TELL ME WHY? So frustrating. Presumably losing a lot of blood cells at once is going to stress the factories that will need to make new ones in quick time and, under stress, I worry it would be more likely they would go for broken stem cells to make new WBCs that were lost. 

She continues:

I have not read any studies showing blood transfusions caused myeloma to become active. 

Here is the problem with this. People with MGUS will be advised not to donate blood to other persons. So it is very likely that no one with MGUS will donate blood and therefore no one will ever find out if it causes issues. Never mind that with the limited funds for MGUS research NO ONE is going to do a study on this.   

Later on, without my requesting her to she

I wrote to Dr Robert Kyle, who was with the Mayo Clinic for many many years and is most knowledgeable regarding MGUS. He responded to your questions as follows. 

Yeh that is right, Robert A. Kyle, MD, Luminary in Myeloma Research -- that guy, you know the FATHER of MGUS.  He stated:

There is no evidence to his knowledge that donating a sample of blood on an ongoing basis would cause the MGUS to progress.  In fact, he doubts that there is any harm to the recipient, but there is no data in this regard.  As a prospective blood donor, one should tell the Blood Bank that they do have a MGUS and the Blood Bank will probably turn them down as a donor. A larger MGUS could have circulating plasma cells, but that is unlikely to be a problem for the recipient.

Ok but here is the problem... of course there is no evidence. People with MGUS are advised not to donate blood - as he rightly states (and completely contradicts my hematologist /oncologist team).

He goes on to incorrectly state that there is no benefit to donating blood.

There is no benefit in giving a research sample other than “participating” in the research project. 

I have to disagree. There is a lot of benefits to blood donation, in particular with regard to cardiac issues. 

In closing he did provide another good nugget of information:

[he had] wondered if you were referring to the use of plasmapheresis if there is too high a protein level in the blood, thinking it would be similar to donating blood and might explain benefit. He explained that hyperviscosity does not occur in MGUS except for extremely rare situations.

That is good to know. At this point I figured I better just shut the heck up over it. My name was on the e-mails and I don't want to get a "reputation" - I had decided that maybe I just shouldn't donate blood at all.   More in Part 3.

Blood Donation: Part I.

This is raring its ugly head again. Due to my high ferritin level I might want to donate blood again.  The simple fact is that ever since I stoped getting my period, my RBCs, Hemoglobin, etc are frighteningly high. Now my ferritin level is high and, that means, my iron is high. None of that is good. So you might say, well, do you have Hereditary hemochromatosis? I doubt it. First, I did "23 and me" and it didn't have the variants for it.  Second, no one in my family has it. I think it is just that my body naturally is good at accumulating iron and frankly I probably over did it on the red meat. 

Blood Donation has a ton of health advantages that are proven. Benefits of Donating Blood  Lower risk for heart disease. Lower risk for stroke.  Lower damage from blood sugar. More flexible red blood cells. Heck my job will even give me leave time to do it. IMHO this is particularly important to someone like me who has IGM and can have increased blood viscosity. Unfortunately, I am depressed to say that even some of the most esteemed doctors don't know anything about this and deny it (without knowing the facts). 

You might say, well ask your doctor about the high iron / ferritin but my doctor is imho far too liberal with her allowances for my body.  She wants to see massively bad results before she will do anything. A small overage is imho time to act.  I get that sometimes blood tests are off and you shouldn't take action based on one blood test, but, I also feel like all these little damages to my body will result in worse health over years and I have seen issues with high iron before (due to a supplement with it).

Also, I fear that blood donation could make my MGUS worse and no matter how hard I try, I cannot get an answer to this. 

First, I asked my hematologist / oncologist. Not only did that incompetent tell me that it was perfectly fine to donate to other people... BUT her boss, who was covering on the day I asked - the head of the hematology / oncology department - told me it was perfectly fine to donate to other people.  They even put their money where their mouth was by writing me a letter stating it was ok. It was clear to me this was not a scientific pronouncement but both HER and her bosses' - Uninformed Opinion.  This was the first sign I had that these doctors were incompetent.  Needless to say I didn't do that.

So I decided to donate to research. The research company was happy to have my MGUS blood and all was disclosed. They did ask me for a letter to insure that it was safe for ME to donate. (This was the first time it dawned on me there could be a danger) and all was fine. Until I got my first labs afterwards and they weren't fine. 

The problem imho was that my incompetent doctor put in labs for my MGUS without specifying a date when they would be run.  So when I went for labs for something else - 6 weeks after blood donation and months early for them - they were run. I suspect that messed up the results. Causing me needless worry.  My light chains came back high and my M-spike went up.  I suspect now this was because the volume of the blood was decreased slightly making them appear to go up. 

The good news... my numbers have returned to normal - 3 months later - but it still worries me. What if this was a sign that blood donation can cause problems with the donor. 

It seems like that could be the case. As far as I understand MGUS... it is a disease of your hematopoietic stem cells. Thus, when and if your body needs new plasma cells, such as an infection, your body sends out damaged stem cells in greater quantities than normal stem cells. (your body mistakenly selects damaged ones first) Thus you create "clonal cells" with your broken stem cells. Now your body creates new plasma cells all the time so you cannot stop this process, but, it would seem that perhaps you want to limit the "call" for mass creation of new plasma cells: less you simply keep creating new clonal cells.  Just like in a situation where you have an infection, it would seem that donating blood gets rid of a lot of white blood cells, and your body will then say *we need to make new white blood cells" - just like an infection. 

Finally, I asked a Myeloma organization that put me in touch with the Doctor that discovered MGUS... and even though he states that I should be fine, yup, I can't trust what he is saying. More on that in part two.  

Sunday, April 4, 2021

Trying to Sleuth Out how this happened: Part two.

Potential #2

Occurred as a result of increased stomach adipose tissue and the increased inflammation. 

I have always known it was dangerous to be overweight in the 40s to 60s age group.  Thus, in 2012 I decided I was going to get thin. I did a liquid diet and, I got thin, I dropped to 155 lbs. The problem, it took me 9 months to do so eating 800 cals per day. And my metabolism absolutely adjusted downward. Through pure will power, I managed to keep it off until 2014 but several jolts to my willpower made it difficult and I quickly added weight. 

2015 I tried again but I realized something was wrong. I was just not losing weight easily. I went to a weight program and had my metabolism tested - 1100. They literally thought the machine was broken. Thus I realized I had to increase my eating to get it up.

So from 2015 to 2019 I did that, and unfortunately I gained most of the weight back. But by the summer of 2019 I had the metabolism tested and my metabolism was back up around 1590. Now the question was, how do I lose it once and for all so that I do not have my metabolism reduce? 

I never got the chance. During my first attempt (time restricted eating) I was diagnosed with MGUS. 

I believe what happened was this:

  • From 2016 to 2019 I started down the menopause road and that helped form where the increased weight went (mostly stomach).
  • The increased adipose tissue in the stomach increased inflammation and that sustained increased inflammation over years caused damage to my Haematopoietic stem cells.
  • During this time I indulged in sugar and sweets - increasing inflammation. 
  • In late December 2019 I came down with an extremely aggressive cold of some sort that is highly unusual for me. I had a high fever and cough and it lasted a week.  My body called for new B-cells and the body created clonal cells from the damaged stem cells. 
  • Two months later, I was diagnosed with MGUS. It appeared to just have started as almost all other tests came back normal but for the M-spike which was low. .5 g dl.
Evidence Supporting this
  1. New research is laying the feet at MGUS and progression at Chronic Inflammation. Obesity causes chronic inflammation.
  2. It just seems to me that whatever happened, happened as a direct result of that "illness" in 2019 which was quite aggressive and unlike anything I had seen before, possibly an early version of Covid-19. 
  3. My MGUS results are extremely low, suggesting that whatever happened, happened close in time to discovery.
Evidence against
  1. WBC seemingly reducing in summer 2018 could have been the reason that the "cold" I caught in December 2019 was so aggressive... my immune system was not as good as pre menopause.
  2. Given that my m-spike hasn't moved in a year, it could be that the problem happened far earlier than December of 2019 and I simply do not know it yet. 
To me, this seems like the most likely explanation given what I know about the health of the body. Things usually take a long time to break and many surveys done on the MGUS board tell me that people usually have a LOT more vaccinations than I do... so one random vaccine seems unlikely to have caused an issue. 

Friday, April 2, 2021

Trying to Sleuth Out how this happened: Part one.

I am sure you're asking what does it matter how it happened? Well, frankly because I don't want to make it any worse and if I have a hint how it happened, maybe I can avoid it.

Potential #1

Occurred as a result of a Tetanus Shot (and cat bite) I had in February 2018. 

Why this seems like a possibility.

  • Prior to June of 2018 my White Blood Count (WBC) was consistent and normal at around 6.0. And I have a long history to refer to thanks to a medical monitoring diet plan that did CBCs frequently. 
  • I always have a bad reaction to a Tetanus Shot. For two days afterwards I have a relatively high fever and feel very bad. This February 2018 was no different. I actually scheduled it on a Friday so I wouldn't need to take time off.  To me this indicates a strong immune reaction. 
  • January 2018, my WBC came back at 6.0 so I know that it was normal then. I had the shot in late February.
  • June of 2018, it dropped to 5.5... and has steadily gone down since. 
Why this seems unlikely.

  • A reduction in WBCs is associated with menopause due to a reduction in reproductive hormones. I had an FSH test (generally a test to tell you if your body is asking for more sex hormones) in August 2017. It was a tiny.. 3.0. And up to that time it was always lower than 7.  But in January 2018 I had an FSH test and, for the first time, it was up around 45. It has never been close to under 20 since that time. IMHO showing that I truly started the process of lowering hormones in Winter of 2018. 
  • I have a theory that after you stop bleeding your RBCs increase and perhaps there is "less room" for WBCs in the blood flow and they naturally reduce. 
  • My WBC has gone down, but, it is still normal. 
Conclusion: The WBC reduction is a natural change seen in menopause due to less reproductive hormones.  The reduction coincided with indications of menopause and is likely not related to MGUS.

Thursday, April 1, 2021

Sodium and Inflammation

So I was born into a family where both parents had high blood pressure. In fact, I believe my dad "died" of it... as after he came down with dementia they found evidence of TIA strokes. My mother had left ventricle heart issues because she had been non compliant with her blood pressure medications.  My brother currently has sky high blood pressure and is on medication.... all of them eat and ate, carbs and fast food. 

But me... I haven't had it done recently, but, until I was 50, I had shockingly good BP. Typically around 110/80.  I reduced my carbs at 30 and pretty rarely eat out. 

I suspect growing up in the household I did I was already a low sodium machine. I always looked for low sodium.  I just liked the taste of low sodium better. I am at heart, a plane jane. 

But recently I have been convinced to start sucking down sodium. In particular because fasting depletes your body of it.. but I think I have been going overboard. 

The day before my blood tests I consumed.

  • A can of wax beans - 1200 mg
  • 4 sausages  - 450 mg.
  • A double cheeseburger (without the roll) 1100 mg.
  • 2 servings of nuts - 500 mg for both.
  • A electrolyte supplement - 250 mg. 
These were just the big ticket items. Now of course you can argue that since I don't take in any sodium the next day, you need to cut this amount in half, but I wonder what such a mass dose can do to the body.  It is difficult to figure out. There are studies out there showing that salt/ sodium does spike inflammation. But, on the other hand, they seem not to keep track of what kind of food you are eating. For example if the sodium is coming from fast food, well fast food itself can spike inflammation due to seed oils. 

One thing I always go back to is chronic inflammation being associated with excess water in the body. We see that carbs can cause it because each carb molecule attracts 4 water molecules... and it is this excess water which causes the body to react. So it makes sense that something like sodium, which causes excess water in the body is also going to cause inflammation because, temporarily, you will have excess water. 

I did find a good study on Salt and MS. There the study proved that Salt does affect your "T-cells" and cause them to start inflammation. 

"This research shows how sodium affects T cells and causes inflammation. Salt affects signaling at the immune level, not the nerve level,” Schofield explained.This offers “compelling evidence that high salt intake could lead to increased inflammation and could trigger in MS, Schofield said. The body excretes extra salt if too much is consumed. But salt could potentially fluctuate in microdomains, which are small regions of membrane, he explained."

So to me this clearly says salt can increase inflammation - so you do have to be careful of it PERIOD... not just for Blood Pressures sake.

Wednesday, March 31, 2021

Bummed out some more...

 Do not get it.  My results are super confusing. 

  • HS-CRP: so I got the results of the highly sensitive C-reactive Protein... and it was 4.0. That is high. You should have a result under 1.0.  I am really shocked at that. 
  • CRP: last time I got blood tests I got regular CRP... and guess what.... my results has gone down since January.  So in January I was at 6.0. Under 8.0 is normal. This time I was down to 4.0.
So, explain this to me will you? 1/2 my inflammation biomarkers come back high, and the other half come back low.  Also, I have lost 20 lbs since January so you would think that would reduce inflammation?

Well some good news..

  • IGM: my IGM came back at 277. So that is still normal. Because I have this tested so frequently I am now starting to consider that my IGM just hovers in the high 200s and perhaps... always has. Of course that can be related to my clonal cell but, isn't it possible that we all have different levels of normal? At this same time this kind of worries me... does this, combined with the inflammation mean I have some sort of chronic infection? 
So, my theories. On the day before I got these tests I mistakenly had a lot of sodium. I purchased a can of wax beans forgetting that canned veggies are put in a salt brine.  I ate the entire large can and later learned that it had 3.5 servings at 390 mg of sodium PER SERVING. (1200 mg in the entire can) Since I have eaten a low sodium diet my entire life I may be overly sensitive to salt... I knew it happened right after I ate it because I was soo thirsty.  I suspect that the generalized CRP may take little while to increase while the other inflammatory markers go up immediately.  This to me suggests an acute insult to the body.

In addition, I have really been eating salt with abandon. I even take an electrolyte supplement that is full of salt. Primarily because I was told fasting will deplete it.  But perhaps I have been doing too much. 

Also my ferittin is elevated.  This leads me to believe I might be overdoing it with the red meats. I am having ground beef almost daily and then also having a large steak about 1x per week.  I have always been sensitive to too much iron and now that I am not menstruating any longer I will have to be careful. I did have my iron tested last year and it was right in the middle but still -- need to watch it. 

Once again I have to call out the incompetence of my doctors.. almost every single test that I had elevated -- when I look it up... it says it is related to blood cancer. But do you think my doctors tested any of it? Nope.  All of these simple and cheap blood tests $12.00 for some of them, can give me valuable information, but they SIMPLY REFUSE. They are so f***ing cheap. Thank god I can get my own.

My plan is to flush the system out, reduce my sodium, and retest. If these biomarkers are elevated again.. I will know I have a problem. 

I am finally done with Keto.

Since the start of the pandemic I have been heavily invested in Keto and fasting. What captured my interest was the book, "Anyway you c...