Fasting could have been a terrible mistake...

When I first started Alternate Day Fasting I saw tremendous benefits.

1. I lost weight hand over foot.
2. My light chains went down.
3. My inflammation was low. 
4. My sugar dropped low.

I had every reason to think it was good for me.  Unfortunately by March I saw some troubling signs.

1. My weight loss was slow.
2. My light chains were increasing
3. My inflammation spiked.
4. My sugar wasn't as low as it once was. 
5. My ferritin was very high (another inflammation marker).

But I kept at it... until that is I ordered a cholesterol panel.

1. My cholesterol was insane at 450.
2. My HS-CRP was 3.8 *high*
3. My Fibrinogen was also above normal. 

Now, I have had this happen before when I was on a liquid diet of 700 cals a day.  The good news is that 8 years later I had no heart damage in a CAC test.  But I went off fasting and started eating at my TDEE every day. Then I got tested again two weeks later.

1. Cholesterol came down 100 points 350 ( expect it to be normal in a few weeks)
2. HS-CRP dropped to 1.8 *average*
3. My Fibrinogen dropped to just above the normal range. 

So it seems to me that something causes all of this to happen and the most likely problem is Cortisol.  Your body is under *physical stress* and it releases cortisol. I can't tell what does it, is it the fasting? Is it the low calories? Is it lack of water -- is it all three? I don't know.  But I do know that I can't utilize this method again unless it is for a very short time. And I do know that I have to eat normally at least until my next visit at Dana Farber (late September). 

Depressed Part Two

Then, let's talk bout my health shall we? Constantly I am told losing weight will be good for my health but it never seems to be.  I lost 37 lbs and I am now merely "overweight" I have a BMI of 28. I weight 169 and am just 20 lbs from normal weight. You should expect to see some major health improvements right? NOPE.

1. My HS-CRP has been elevated since March. I cannot get it down. It is 3.8. It should be under 1. I suspect this has to do with my dieting because, the only other time this marker was raised on my blood tests was in 2012 when I was on a liquid diet.
2. My cholesterol went CRAZY... again this happened perviously when I was on a liquid diet. Cholesterol was 400 mg/dl. And LDL was 350! Just crazy. I might have been happy if my HDL was increased but it wasn't. In fact, ever since hitting menopause... I have been having trouble getting that up. 
3. My hematologist came along and tested me for MGUS tests right after Dana Farber and they were much worse than Dana Farber.  In fact, my light chain ratio went way up... again. So I cannot really write that off to blood donation. 
4. There is, in fact, very little that I had tested here that actually came out good. A1C  came back at 5.4 which is ok but not what I wanted. Triglycerides ere 93 which again... were ok but not great. 

I am also growing increasingly tried of my doctors. At this point I feel like they are my complete enemy. I have just about had it with Dr. K.  At my last blood tests she ran another test again that I didn't authorize.  (Hepatitis C) When the high cholesterol came back she wanted me to go to a cardiologist... instead of just retesting.. now I have to pay for those retests. I don't want to go to a cardiologist. What is he going to do?  I know, he will just reiterate HER opinion that I should be on statins. Why would I allow that? 

I feel like I don't have a doctor. I feel like I have an "Atrius health" wealth coordinator. This year alone she has subjected me to a colonoscopy... a ct scan... and CAC... and more welfare for "Atrius Health" but I rarely feel like I am getting good medical care. 

Dr. K is no longer local. She is doing my care remotely. That is an obvious problem. But I haven't been able to get an appointment with almost any doctor. They are all booked and pushing me off on "Physician Assistants".

At the same time I am so sick of this whole covid thing. It seems like NOTHING WORKS. First, I am so so so sure I had covid and covid started my MGUS. But I keep testing negative on the antibody test. I find that amazing because I sure haven't been hiding in my house.   I think it is because 1. The first antibody tests available wasn't until about 6 months after I had covid... and 2. I have IGM MGUS which reduces the level of IGG Antibodies. I have about 900 of those.  So if, in general I have an IGG deficiency  couldn't that make it difficult to find the antibodies? Covid has been around for 2 years (since the fall of 2019) and you are telling me I haven't been exposed? 

And of course, Dr. K refuses to allow me to get an antibody test on my insurances' dime because she says they don't work. F** YOU. 

Depressed... Part One.

I haven't posted for a while because I have been well... depressed... 

I am being forced back to my workplace. I knew the day would come but I truly thought that there would be some accounting for the fact that we were basically without any strictures when we were working from home and we were a million times MORE productive. Nope. At every turn the employer is acting just like old times. 

It is just unacceptable.  I have to leave my house at 7 AM and return at 7 Pm. That isn't a life. 

At least 2 hours (or more of my day is spent stuck commuting).

I have no options for reasonable food. As all my food must be consumed outside the home or, I have to bring it with me.. and given an hour and 1/2 commute, that may be a little dangerous.  I had asked if we could telework on the train...so I could work in the building from say 9:30 to 3:30 and use the time on the train to get work done.

Nope... Nope ... Nope.. is all I hear these days. 

We have to return on August 2. We were told there were formulating a Telework policy but, no policy. So I guess I might GET that policy when I retire.  I have tons of leave time but it is impossible to take right now. There is simply no one to cover for me.. I am also not vaccinated.  For my independent thinking I will have to wear a mask all day long.  I do think I will be getting the Novamax vaccine but... that won't be out until October and, I would like sometime to see if it has bad side effects. 

The life I am living right now isn't a great one.  

My Results: I don't know what to think...

So I got my M-spike information back and I am very confused. 

At my other doctor,  the below was the result. 

GAMMA 1 M-SPIKE 0.2 g/dL

GAMMA 2 M-SPIKE 0.2 g/dL

SERUM ELECTROPHORESIS INTERPRETATION Two faint bands with restricted mobility (M-spike) in the gamma region consistent with monoclonal gammopathy. IFE testing on 11/17/2020 revealed two IgM kappa monoclonal proteins. Electronically signed by  MD.

 

At Dana Farber

Gamma M Spike 1         0.25 g/dl*

Protein Electrophoresis:

-Two M-spikes detected

One M-spike is admixed within a background of polyclonal immunoglobulins. The M-spike concentration reported includes both the M-spike and the polyclonal immunoglobulin background and is thus an overestimate. One Immunofixation shows a faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantitated.

Immunofixation:

-Double gammopathy with IgM Kappa paraprotein.

The findings are consistent with monomeric and pentameric forms of IgM

paraprotein, and do not necessarily indicate biclonality.

So I am SOOOO confused.  Was this an improvement? Was this just a different way of coming up with the same result? I have no idea.

My guess is that this is an improvement /stable because all the other test came back normal. But at the same time I wonder about all this polyclonal immuogloblins talk. Does this meant that I have some sort of chronic infection that I don't know about? I ask because my hs-crp is high as well. 

Now I am kind of obsessed with finding out what could be causing the polyclonal immunoglobulins. 

Dana Farber: Part Three

So after the appointment was over I headed down to the lab to have my blood drawn. That place was a zoo. There were probably about 55 people actively having blood drawn.  The woman taking my blood was a little bit rude. Giving me a lecture on not drinking enough and fasting the day before. But I did learn that you should drink on the day before giving blood. Drinking on the day of blood does nothing.  I did not know that.

I left, got my car from the Valet Parking, and was home by 11:15 am. At which time I was shocked to find 1/2 my lab results on my portal.

They were all amazing. 

My CBC was 100% normal. And my Red Blood Cells were lower than the last time I had them, IMHO owing to my blood donation in April.

My CMP was 100% normal (which is good to know given my fasting) but my BUN and Creatine were less low than I would like them to be. Time to drink more water. 

My LDH was once again at the very bottom. 

I had a new test that I never had done before BETA 2 MICROGLOBULIN -- which was normal. I am not sure how to evaluate that one.

Finally, my light chains came back and they were higher than I would like.

But I have to say I do think it is caused by the blood donation.

The last time I donated blood was October 12th of 2020. I had the light chains tested December 7th, 2020. The result:

FREE KAPPA LIGHT CHAIN 17.5 mg/L

FREE LAMBDA LIGHT CHAIN 9.2 mg/L

FREE KAPPA LAMBDA LIGHT CHAINS RATIO 1.90

I had another blood test in February where it went down to  Ratio of 1.42. (normal)

Around April 14th of 2021 I donated blood. And here about 60 days later.

FREE KAPPA LT CHAIN 17.6 mg/L

FREE LAMBDA LT CHAIN 9.6 mg/L

FREE KAPPA LAMBDA RAT 1.83

Almost exactly the same. It is my theory that the light chains remain constant it is the blood level around them that changes. You will see the measurement is 17.6 mg per Liter of blood. To me, this says that I have less liters of blood. There are about 5 liters of blood in the body. But it absolutely varies. 

Lets say that now, I have 4.8 liters of blood. The amount of light chains is going to appear to be bigger than if I had more blood. 

I can test this theory by not donating blood before my next measurement and making sure to drink plenty of water before going for my appointment. 

Dana Farber Part Two

Upon arriving at Dana Farber I decided to park in the Valet Parking. I thought it might be expensive but it wasn't! ($10.00) I guess since they deal with people with cancer all the time, everyone was super nice and helpful. Even the Valet Parking people. 

Traffic had been so good that I arrived an hour early. It was simple to find (just literally take the elevator up to the 6th floor). I checked in and they told me to have a seat in the "amazing" waiting room. Which was big enough for social distancing and had a very nice view. 

Within only a few minutes they called me back to get my vitals.  After that, I was free to use the bathrooms and generally just sit around and wait. I was called back for the appointment right on time at 9:30. 

Dr. Sarosiek came in immediately and introduced herself. She was polite and humble. She really didn't say much and sort of let me talk. Everything in her demeanor was someone who only wanted to help.

First, I talked about inflammation and the study that seemed to point to that as a cause... and how I am unable to get the inflammation down lately.  She kind of took it all in.  She didn't think I should obsess over that. Basically as she said, we don't know why the body can get inflamed or even if it might be a good thing. She noted I could have a virus that I am not aware of she also noted that one study does not a conclusion make because other studies can come out later.  She did note however that MGUS patients tend to have higher inflammation than normal patients.

Second, I asked about Blood Donation and she was great. I told her before I asked the question of the research I had done with Dr. Kyle and yes her eyebrows were raised.... that I was talking to him... but she agreed that, for me, it was not going to be an issue.  The way she described it was that blood donation affects the red blood cells so it they are "separate systems" from WBCs.  She did note that some people with MGUS can have anemia and, in that case, you should NOT donate... but that my numbers were kind of perfect (RBCs and Hemo-crit).  So she told me it would be ok. 

Third, I did ask, in a roundabout way, why Blood Donation is not promoted with MGUS patients. She said that the Light Chains, M-Protien, and Immunoglobins are just too small in MGUS patients for it to make a difference.  You just wouldn't be getting very much out of the body in 1 Pt of blood.  I probably should have known that. 

I asked her about Metformin for preventing progression. She didn't really opine on it but I noted there was a clinical trial at Dana Farber on it. She looked it up on the computer and encouraged me to give it a try. We will see. 

In discussing my Scoliosis, I asked her if Waldenstrom macroglobulinemia caused bone issues like MM. She told me NO that is a rare complication for WM. That 2 to 3% of people with WM end up with that. This made me happy.  She did note that it is possible I would go to MM but that only about 5% of people with IGM go to MM. So I will take that risk.  She did note that everyone with MGUS has risks for weaker bones. 

She did warn me about getting too attached to any one blood test. She said that the M spike is an interpretation... so sometimes movement is due to that. I have heard that before. She said things are usually very slow moving so they like to see a clear progression before doing anything. 

She decided to cancel the bone marrow biopsy. She said my overall numbers were just too low. She suspected that if they did it, I might have a very low amount. She did say some people like to do it so they can be sure if they would progress to WM or MM (as they can look for the genetic mutation that is WM) but I am happy to wait. 

Disappointingly at the end she did try to send me back to my hematologist but I had to come out and say I didn't want to go. She then was fine. She made a new appointment with me for the last week in September. 

Finally a great appointment with a doctor at Dana Farber: Part One.

I have only been seeing doctors for MGUS since February of 2020. But most of them were less than good imho. I was first referred to a Hematologist/ Oncologist at my local doctors practice. Upon entering the room she 1. Told me MGUS was nothing and 2. spoke the entire visit almost not letting me have a word in edgewise. 

Ok fine, no matter I had an appointment at Dana Farber with a very important doctor... but, and perhaps this was due to the Pandemic, we met via zoom and he spoke non stop for the entire visit until such time as he said bye and ended the chat.

Ok fine, he referred me back to my hematologist. With specific instructions that I should be seen every three months for the first few years.

When I returned to my local Hematologist / Oncologist, she told me she was leaving the practice. So I had to pick another one. That one wasn't available until January 2021. We agreed I would have labs placed but for some odd reason (that I don't buy) she said that she couldn't direct when the labs would be done. If I went for any blood tests they would be done. So I went in November of 2020. 

And then I had the appointment with her in January 2021. I have previously written about that.

Four doctors all imho pretty bad. 

Finally I demanded that I be seen at Dana Farber in the correct department.  I have IGM MGUS, so, I need to be followed with specialists in IGM. So I did my research and I made an appointment with Dr. Shayna Sarosiek, MD at the Bing Center for Waldenstrom's Macroglobulinemia. Why was I happy to get Dr. Sarosiek? She is young first of all... so she can presumably stay with me for my lifetime with this... secondly she doesn't seem overburdened or too big for her britches. I went yesterday.. and I am happy to report a good appointment.