Second Appointment With Dana Farber

This one was not as good. It was a zoo. There were so many people there and things were so disorganized.

I went in as usual for vallet parking but once I entered the doors they put us in a system were we had to get covid checked all on the first floor. So there were tons of people in the elevators and tons of people getting covid checked. I managed to make my way up to the covid check on floor one only to have one of the most rude people ever -500 lb guy in a wheelchair - tell me to get out of the way. 

The nurse told me there was a clear station down on P2 so I went there. 

After that nightmare, I to get blood and again, it was a complete zoo. And frankly I had the same lady take my blood as last time and she couldn't find a vein... gave me a lecture about water. I told her I had taken water this time... but whatever, at least I got called within 5 minutes of check in. 

I went up to floor 6 and that was full too. Last time I went, there was no one around. 

I got my vitals taken and again, their blood pressure machines do not work.. coming back at 130/68. Too high. 

The good news is that my weight has stabilized  I only went up 4 lbs and I think that is fair given the fact that this time I wasn't fasting. 

It was at this point that some of my blood tests came in. Good news on my CBC.. everything came back normal. This is good because I just had the Johnson and Johnson vaccine and I was worried about platelets being too low. But they weren't they were at 185. Normal for me. All the other blood markers were ok as well but for the WBC. The doctor thinks that is due to vaccination. 

The horrible news... was that on my CMP.. my liver enzymes came back crazy elevated... more than I had ever seen in my entire life. And my liver enzymes are usually in good shape.

AST: 131 U/L (normal is less than <33)

ALT: 182 U/L (normal is less than <34)

My guess is that this is due to my week of "sugar" -- I was severely bad this week, having sugar and carbs almost every day due to preparing to start dieting again... but I never ever ever ever thought it could be that bad on my liver. Wow.  I have gotten another test from my primary care and will be resetting in a week to make sure it is the sugar and not something worse.. I will be keto the entire week. I asked the doctor if it could be the vaccine but she didn't think so. Fortunately the liver is one of the best regenerating organs in the body. 

The appointment with the doctor kind of sucked. There wasn't a lot to talk about and most of the tests hadn't come back. I asked about the light chains but she doesn't seem to think they are anything to worry about as long as they stay normal... it seems like they are going higher and I am starting to think that I am going to have to get serious about turmeric and or IP6. But at the moment the results are not exactly accurate. 

Finally my other annoyance is this... the last time I had labs... they were all back immediately. This time... it is taking forever. To me, that says there is a long back log. 

New Primary Care

I really am starting to hate doctors. Because my last primary care left the practice I had to get a new one. I chose one that got great grades on "Vitals" and I hoped for the best.  Once again I was horribly disappointed. 

She was late...and stupid. 

I arrived at 1:30 pm for my 2 pm appointment. I had been told to arrive at 1:45. What time did she appear? 2:15.  This after a nearly 3 month wait just to get a meet and greet appointment.  I had to put my work off for her...so I expected her to be on time. 

But I am getting ahead of myself. 

First we have the assistant take me back to get my vitals. The good news... they are not using a machine to take my blood pressure -- GOOD NEWS. The bad news.. she took it grossly wrong. She put me down in a low chair and pulled my arm up high... so it was very much higher than my heart. BP: 100/68. Is this why my BP on my record is all over the place? This also concerned me because I had just been vaccinated and it seemed, if correct, a low BP could be a sign of clotting. But when I got home I took it on my machine and it was 120/80.. a typical result. 

The assistant did not take my body temperature - even though I had told her I had been running a fever the day before. Not to mention it is covid season.The assistant did take my weight (of course) which came back at 178. IMHO much higher than I thought it would be and my height (which fyi I fudged a bit) at 5'4. My scale at home as me at 172, but I was full dressed and had eaten. 

The doctor flew in without as much as a how do you do.. it was like she was checking off list. She immediately went for the Cholesterol. I told her nicely I didn't want that tested but I fear she took it as I didn't want that tested right now.  She went on about my Scoliosis, but, that has been stable my entire life... she then wanted to do a pap but again, she is out of her medical depth as I am not due for that for 3 years and I just had one.  The rest of the appointment was bullshit that I am tired of dealing with... flu shot? Shingles shot? Mammogram? Blah blah blah. 

I could not believe it when, after losing 37 lbs this year she started giving me the lecture on losing weight. Honestly is it ever enough for them? I am guessing that my mask obscured my face frown but I stopped her and told her i had lost the weight. I had expected some congratulations but she obviously hadn't read anything on the chart before walking in.  I told her I had stopped because of the results I kept getting on my blood tests.... no clue.. and of course she offered no suggestions. 

What did she NOT concern herself with at all... at all.. my MGUS. When I mentioned it to her ... she imho got defensive, once again stating the party line that MGUS was "just an extra protein" and it "may not progress at all" and "am I seeing a blood doctor about that." Ugh, the most important thing on my chart and she couldn't give a hoot. 

The rest of the appointment imho was a bust. I have very little confidence in her at the moment and will continue to look around for better doctors. 

I truly think that I have to found a lobbying group for MGUS. The thing is.. I don't know how to. Until doctors are getting MGUS alerts daily they won't pay attention. I also want to test the general population. So we can really know how many people have MGUS and how many of them have symptoms. 

Update on Health Tests

A good 6 weeks after stopping Alternate Day Fasting.... things have normalized.

• HS-CRP is 1.7 mg/L
• Cholesterol Total is 311
• LDL is 220 
• CRP is a shocking (shocking good) 1.8 (was previously in the 4 and 6 range).
• HDL is 59. 
• Sed Rate went from 28 to 14. 

First, I want everyone to note that my doctor failed to 1. Apologize for being dead wrong and not listening to me and 2. In fact, made zero comment. Perhaps that is because she has already been fired.  But in 6 weeks I dropped my cholesterol from 450 to 311.  I bet she has never seen such a thing.  If she and her cardiologist buddies had their way I would have been on pills for the rest of my life.  I found the root cause instead. 

HS-CRP is close to my normal level. All during my 30s and 40s when I had it tested I was around 1.5 mg/l.  It has dropped from the 4s to normal. 

Cholesterol remains higher than I would like, normally I am around 250 to 270. But I also have found out that cholesterol increases after menopause. I have to ask why? IF your body increases something --why would it be bad for you? IMHO it isn't. It is something that is good for you.  Cholesterol is protective. 

I will admit though I had NO idea that ADF could cause these issues. I fear I did damage to myself and possibly damage to my MGUS. I had no idea that cortisol could go up so much with fasting. 

My guess is that it has to be fasting. In 2012 I did a liquid diet. Though, I was only eating about 700 cals per day... I didn't have these kind of horrible results. My HS-crp did go up but.. my cholesterol wasn't that bad.  I saw some information about how low insulin can cause cortisol release. So I think I need to eat 1x per day to avoid a large cortisol release. 

My plan:

1. Keto Meal plan.
2. Time restricted Eating (1100 cals per day).
3. Eat in the morning to head off cortisol release.
4. One 40 hour fast - 1 time per week.
5. Exercise - 30 minutes per day 3 or 4 times per week.
6. Considering trying to give up coffee.

Based on historical weight loss this should have me losing 1 lb per week. If I do that until January I will be down 16 lbs. That will have me about10 lbs above normal weight. That is the goal. 

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.