"Soursop is anti inflammatory."
Okay, so what to do is identify the Method of Action. Then you might find another plant with the same MOA.
- e.g. Aspirin and other salicylates interfere with Cox (cyclo-oxygenase) enzymes, while Boswellia does with LOX-5 (lipo-oxygenase)
"I will get him going."
Should also help psychologically. It's a mood elevator and anti-stress. Exercised muscle also produces an anti-inflammatory called IL-10.
"I tired of mowing his lawn on my lunch .lol. Just kidding."
I use an old-fashioned non-motor reel mower. We were meant to move, without being a fanatic about it.
"Ill let you know how it goes on Monday."
Great.
"Let me know if you think of anything else."
I will.
"Thank you again and enjoy your weekend!"
You, too! Watch out for Tasmanian Devils.
[here is about iron]
"he had increased iron stores without the rings"
That's a very complicated thing. Iron is necessary to make red blood cells. During a severe infection, iron gets shifted into monocytes (aka macrophages); so there is less iron available to make the red blood cells. Monocytes/macrophages are made in the marrow, they are immune cells that fight infection.
The absence of iron rings in the marrow more or less means there was not some bad reason for the increased iron in the marrow.
"Looks like the Hemoologist diagnosing as MGUS."
Okay, we've already touched on that. Nothing to be alarmed there. This is pretty much good news.
"She sent him for another CBC and Metobolic panel this morning."
The metabolic panel measures blood proteins. The 'G' in MGUS is for Gammopathy. Gamma is as in IgG, which is a type of antibody and we've also touched on antibodies. In other words, a mystery immune dysfunction.
"I read thats MGUS is not a major cause of anemia."
Maybe the anemia is due to what I'd speculated on at the beginning: the iron shift.
"I need to see what she told him. Stay tuned "
Will do :)
I don't have any social media, no.
---- what is the difference between autoimmune and auto inflammatory?
Autoimmunity requires the presence of auto antibodies -- antibodies which bind to the body's own molecules.
-- what does 'bind' mean?
that's like how a key fits a lock. Your house key won't go into your car. Or it's like how a glove fits a baseball after lots of use; it won't fit a larger or smaller baseball, or fit a cube or pyramid shaped baseball.
-- what is self?
before any antibody gets approved for use, it gets checked to see if it can bind to anything in your own body. But sometimes that safety check fails - like if it approves thinking of a tomato as being a dandelion and is not self
(-- are auto ABs the only way to get autoimmunity?
no. Since there is almost infinite complexity, I'll just mention that killer T-cells can also directly attack the self.)
========================
--- what is auto inflammatory?
That's when the body damages itself, but no auto ABs are involved. When certain people die from eating a peanut or sesame seed, there are no auto Abs. The same is true for EoE: no AUTO ABs. But there is an excess of inflammatory biochemicals involved, which harm the self.
Many docs won't use or know the term auto inflammatory, but any doc knowledgeable about MCAS would know.
=========================
The famous ANA test checks for the existence of a number of auto ABs. There is a common misconception that if the ANA test is negative then the body is not harming itself.
If in future you'd ever like to read through this whole thread again, I made a copy here: https://web.archive.org/web/20240518102311/https://
www.medhelp.org/posts/Leukemia-and-Lymphoma/Flow-cytometry-granulocytic-precursor/show/3080288
Btw, when I'd said that "We were meant to move...", I hope you understood that I was not criticizing you about the lawn mowing. I was, I guess, saying the type of encouragement to give to somebody like your father. That's what I did here, those many years ago.
What are antibodies?
Some immune cells are killers. Imagine that you have a spray tank of herbicide. But you don't know how to tell which plants in your yard are to be killed. So I come along first and put tiny tiny red flags on the dandelions. You know very well how to spot the red flags, so you can now spray and kill the dandelions. Another day, I put the flags on nettles. And so on.
But one day, I go awry. To me, young tomato plants mistakenly look the same as dandelions; so I put the red flags on them. You come along and spray the tomato plants. That is autoimmunity.
"For the EoE we went Gluten, Dairy and Egg free. D-limonene to 2 wks, Saccromyces boullardi, tumeric, astragalus, astaxanthin, marshmallow root, DGL. The esophagus rings were completely gone in 3-4 months. He has tested zero for the last 3 years. I think we found it when he was 17. We made power shakes with nuts ,seeds,coconut oil , nut butter, almond milk fruit and rice protein. He was 5'10 and down to 114 lbs. Scary thin."
Interesting. That takes some mulling, thanks.
"The doctors were amazed at the recovery."
I bet. They could have done a Case Report and gotten published, maybe. Much better approach than implanted feeding tube. Tell me sometime your thinking that went on.
When you gave his Eos count, you were referring to snip biopsy (per High Power Field) and not a blood draw? Isn't 450 per HPF ultra ultra high??
"...my nephew. He got Guillume barre when he was 2"
Aha, so I'll suggest strongly that you approach every medical condition (including possibly in you) with the forethought: there is an Fx of immune hyperactivity/dysfunction. But most docs won't care, only the wise ones will.
So much is unknown about the immune system. Ten years from now, 2024 will be thought of by docs as being in the Flintstone Age of immunology/rheumatology.
"Oh his IGA is high and monocytes. IGG was a bit high now on the border. Both light chains sre high with a good ratio."
Aha, you have some advanced knowledge yourself. What you wrote there immediately makes me think of monoclonal gammopathy of undetermined significance (MGUS). Once again, we see that phrase "undetermined significance".
So also once again, I'd refer to being anti-inflammatory and overall healthy as possible. I hope he has willpower :)
I took care of my father for two years when he had a stroke and then lymphoma. So I know that some family member looking over them can have a big impact. I actually got him in better shape than he had been in maybe 15 years or more. You are very motivated, which is great. Bravo to you.
One more thing for today (and I'm trying to not overburden you): what the hematologist/oncologist is saying is his probable diagnosis is CCUS, ,which stands for clonal cytopenia of undetermined significance.
Let's focus on the phrase "undetermined significance". That tells us that they don't quite know what to make of it. Which is good because having a mystery condition is much much better than having cancer.
In this case, being "clonal" is still not-cancer. You might run across the term "neoplasm" which also can be not-cancer. So all in all, things are looking pretty good for him. I hope you can relax a bit :)
Wombat, do you remember me saying that your dad might have an overactive immune system?
So it's important to know if he has had testing for that, for what are called "inflammatory markers". Example tests are CRP, ESR, IL-6.
If he is highly inflammatory, then maybe he would benefit from taking anti-inflammatories.
You're a good daughter, he's lucky to have you watching out for him :)
You should mention to any doc he sees that there is lupus in the family and he might have an overactive immune system.
"he had increased iron stores without the rings"
That's a very complicated thing. Iron is necessary to make red blood cells. During a severe infection, iron gets shifted into monocytes (aka macrophages); so there is less iron available to make the red blood cells. Monocytes/macrophages are made in the marrow, they are immune cells that fight infection.
The absence of iron rings in the marrow more or less means there was not some bad reason for the increased iron in the marrow.
"His FISH came back normal too."
That's a good sign, of course. They might just declare this to be watch-and-wait to see what happens.
"...got a virus for 2 months"
If they didn't test and find an actual virus, that could have been just inflammation. For example, if you get the flu then the symptoms you feel are all from immune system reaction. From biochemicals like interferon and cytokines.
Hi, the simple answer is that this does NOT necessarily mean there is a blood cancer such as leukemia. Since this is an advanced test, that tells me that at this point there is some uncertainty about what has been going on and elaborate tests are necessary.
But yes, it could be a blood cancer. **However** what you want to hope for is that it is actually the result of some unusual immune system condition. So what I'd immediately look for is the presence of a family history of some unusual immune system conditions. I see in your posting history that you talk of someone having Eosinophilic Esophagitis, so that fits.
-------------------
Advanced answer:
Flow cytometry examines immune system cells and sees what molecules are on their surfaces. CD56 is a molecule that is typically found on certain immune cells called Natural Killer cells. Those NK cells typically fight infection. When immune cells are being active, that's called inflammation.
There is a wholly different type of immune cells called granulocytic precursors. They should NOT ordinarily have CD56 on them (it is aberrant/abnormal to find them there). But sometimes, when an overactive immune system runs amok, it can produce unusual results in a flow cytometry test. The results can look like there might be cancer, but there actually is no cancer. It is benign inflammation.
And listen: a subset of granulocytic precursors involve the immune cells called Eosinophils! So there is a very possible connection, and it's imporatnt to know that immune cells running amok can cause anemia. So that's what to hope for and definitely to bring up to the hematologist.
Good luck. I think you will get good news in the end.
"I will check into the O2 videos."
I looked for you and couldn't find one, only those using a PulseOx meter.
Here's how to do it manually, to get a rough idea of oxygen saturation. Try it on yourself first. Pinch one of your finger nails until it turns from pink to white. Then release, and see how long it takes to go back to pink again. Almost immediately is good, more than a full second or two is bad.
'fatigue, ankle swelling and lightheadedness isnt from the anemia. Everything I read shows those as symptoms'
- not ankle swelling.
- also prbly not the others if O2 Sat is good. Find videos on how to pinch the fingernails to get a rough O2 Sat.
This is a good time to introduce Differential Diagnosis. Websearch for -->
DDx ankle swelling, 80 yr old male
So then, they have to look into mild heart failure for starters. Then the others on the DDx list.
========================
You can also one of these days search for--> shared etiology CCUS MGUS
Age will be one factor in each.
========================
"copper"
Does he uses denture adhesive? Zinc can inhibit copper absorption, there was even a class action lawsuit some time back.
"What are your thoughts on a possible copper deficiency?"
I don't think he was tested for that. It's possible for low copper = low RBCs. Does he have copper pipes at home?
"What is the difference between CCUS an MGUS? The report shows CCUS and he visit summary MGUS. Not sure how different they are"
Correct, they are different except for the Undetermined Significance part.
CCUS = Cytopenia, cyto = cells, and penia = low
A genetic mutation results in low cells such as RBCs = anemia
MGUS = Monoclonal Gammopathy
A genetic mutation results in lots of excess antibodies in the body
So we don't know what is in the heads of the 2 different docs.
"specialist gave him Prilosec"
Clinicians are typically not mystery solvers. They just do pattern matching. Patient has a stomach or lower esophagus problem? Then give Prilosec and get the patient out the door. Clinicians have to be quick that way, or else the other patients would be stacking up waiting their turn.
The worst place to go for mystery conditions is the ER. ER docs are great at what they are supposed to do (heart attacks, trauma, etc), but have no experience with solving immune system mysteries. Many people (not you) mistakenly go repeatedly to ERs over mystery conditions, because they have no primary.
"The Eos count from the AnA test"
Well, no. ANA means Anti Nuclear Antibodies. Antibodies are shaped like tiny tiny lobsters with two claws that grab onto specific things; one purpose is to mark invaders for destruction by killer immune cells. Antibodies are not cells.
Eosinophils are white blood cells. They normally swarm and attack parasites that are larger than the Eos. Like Lilliputians attacking Gulliver. In EoE, they run amok and attack his own esophagus lining. They wouldn't be measured on the same test as ANA, though maybe they might appear on some same sheet that you received?
Eos should not normally be found on the esophagus, but Mast Cells are normally found on the esophagus. When MCs go haywire, they secrete biochemicals that attract Eos to the esophagus. Then the Eos do their damage.
I am making the distinction because knowledge of how the immune system works is crucial for anybody who wants to treat themselves and not just follow instructions like the typical, passive patients.
"Cudos to you as well."
Thanks.
"Its so tough when they get older. Im a single mom with a 23yr old with EoE. I healed his stage 4 with diet and herbs. His Eosinophils were like 450 now zero!"
Do tell, what did you give him? I have a cousin who had EoE. You might be aware that although it is the Eos that do the damage, it is almost certainly the Mast Cells that orchestrate things. There's a saying that "Mast Cell disorders are seen by many doctors, but recognized by few". They have over 100 inputs/sensors (receptors) and produce over 200 biochemicals (mediators). So they can do a lot, good and bad.
Any Fx of flushing, itching, or bad allergies?
"I do alot of reserach on natural remedies and really try to find answers to these test results. These were over my pay grade. Lol. I so appreciate everything.. Truly "
I am very happy to have been of help. It's good to talk to people like minded. We have two weeks left.
"Yes he takes boswellia as well. He has bad knees so its been hard to get him moving. He tries. He has a winged scapula as well. I told him to do push ups on the wall. I was going to give him soursop but his blood pressure is on the lower side."
Aha, then you are the herbalist. And the drill sergeant. Cool, you remind me of me :)
There are also phytosterols, such as beta sitosterol, campesterol and stigmasterol. They are in seed oils, and I personally think the hysteria against seed oils is unfounded. And trendy.
You might devise exercise for him using dumbbells, kettlebell or power bands. High rep, low intensity.
I hadn't heard of soursop.