• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Declining neutrophils

Messages
10
Hi everyone,

I've been monitoring my labs since the start of my illness, and found something curious. Look at my neutrophil counts versus time:

1549979553084.png


My illness started about February 2017. From the figure above, it's clear that there is a downward trend since the start of infection (both in absolute and % values). Before infection, my neutrophil counts were always above 4000 (and oscillated around 50%). Now the counts are around 3000 (absolute) and my last three measurements were below the reference range in %. My last CBC resulted in 39% neutrophils, and it looks like it will keep dropping. I'm very concerned about that.

Anyone else with similar figures? Every other result seems to be within range...
 
Messages
4
Hey @McFly - found your post because I was searching for others that might be experiencing declining neutrophils. My WBCs were normal and fairly consistent for the first 18months of my illness. For the past 18 months though WBC count, primarily driven by neutrophil count has been decreasing and effectively halved. I frequently have neutropenia now (<1500) and had severe neutropenia last week and have been (<500). This correlates with worse patches for me. I‘ve seen a hematologist which so far hasn’t been much help, they suspect it’s autoimmune neutropenia. I don’t have much to offer you but if you never saw a hematologist that would be a place to start, though you likely won’t get a referral until your numbers get much more unusual. Did they go back to normal or get worse for you?
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Consistently low neutrophil counts was the first laboratory anomaly I had way back in the beginning of ME, when all my other labs looked normal. That finding was what stimulated me to investigate further, eventually leading to the ME diagnosis. I also noticed lower neutrophil levels during crashes.

Remember that a low level of neutrophils in the blood does not mean that the neutrophils are "gone" or "dead". Most of the time, it means that the neutrophils have left the blood to attack an infection/wound in a different part of the body. Neutrophils are one of the "first responders" of the immune system, and are usually the first immune cells to leave the blood to attack an infection/wound. I don't think neutrophils are too involved in autoimmunity, but I can't be sure.

Hope this helps.
 
Last edited:

Nuno

Senior Member
Messages
112
Consistently low neutrophil counts was the first laboratory anomaly I had way back in the beginning of ME, when all my other labs looked normal. That finding was what stimulated me to investigate further, eventually leading to the ME diagnosis. I also noticed lower neutrophil levels during crashes.

Remember that a low level of neutrophils in the blood does not mean that the neutrophils are "gone" or "dead". Most of the time, it means that the neutrophils have left the blood to attack an infection/wound in a different part of the body. Neutrophils are one of the "first responders" of the immune system, and are usually the first immune cells to leave the blood to attack an infection/wound. I don't think neutrophils are too involved in autoimmunity, but I can't be sure.

Hope this helps.

Hey pyrrhus hope you're doing well.

I just found this post after searching for neutropenia, since oh well, my neutrophils have been crashing since my onset on May 2020.

Just for a brief intro:
Before May 2020: neutrophils always 4/4,5+
September 2020: neutrophils around 2,5 (noticeable crash)
December 2020: neutrophils at 2
June 2021: they were at 1,45
October 2021: they are now at 1,3

This surely has to mean something? It kinds or ressembles what HIV patients suffer, could a different virus bacteria or fungi be causing this? I wonder...
 

livinglighter

Senior Member
Messages
379
I was assessed as having ME/CFS at an infection and immunity service that also treated HIV and AIDS patients. Part of the assessment involved blood work at the immunology department. They said I could also have cyclical neutropenia based on my low neutrophils results. I never followed it up as I was very ill at the time and my GP overlooked it. But I plan to now ask them to investigate as I’ve always had reoccurring infections.
 
Last edited:

Crux

Senior Member
Messages
1,441
Location
USA
Another possible cause of neutropenia is copper deficiency.

https://practicalgastro.com/2020/08/13/copper-deficiency-like-a-bad-penny/

Signs and Symptoms of Copper Deficiency
Symptoms of copper deficiency include anemia, neutropenia, and pancytopenia (Table 4). Anemia may be macrocytic, normocytic or microcytic. Patients may also present with neurologic deficits including peripheral neuropathy, ataxia and muscle weakness.4 Copper deficiency has also been associated with myelopathy or myeloneuropathy resembling B12 deficiency which includes a spastic ataxic gait and sensory ataxia caused by dorsal spinal column degeneration.4,12 In addition, cases of optic neuropathy leading to blindness have been reported.13,14
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Initially I had low lymphocytes, also fairly common in ME. But now over the last 4 months I've started getting consecutively low and indeed lower over time neutrophils. My prolactin levels are also very high and continue to increase.

Blood tests next week should show me if it's plateau. It's all very odd!

BUT! Some people are convinced the vaccines for covid nuke neutrophils and nobody seems to know why. This is speculative though and no studies prove it out.

Personally I think lots of things can probably drop the neutrophils.
 

Nuno

Senior Member
Messages
112
@Crux thanks for insight but all my vitamins and minerals are ok. Besides that I eat the healthiest I can, all organic, not much saturated fat and carbs and a big variety.

So I dont think its a vitamin defiency at least in my case! These guys are going somewhere for a reason, maybe @Pyrrhus might be right since my onset was with a viral gastroentiritis...

What people dont seem to believe is that you can have a pers. infection even without fever.
 

Crux

Senior Member
Messages
1,441
Location
USA
@Nuno ,

I rarely get a fever and have had many infections. Body temp is low.
Pathogens have a way of subverting the immune system.

I've eaten nutrient dense foods for decades, even high copper foods.

I take copper glycinate as a med. It keeps many infections at bay, though not completely.
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
@Nuno

Are your neutrophils still declining?

You have the same pattern of neutrophil declination as me.

Are you taking oat bran every day? If so how long have you been taking it for? Do you know which months (when you started it)? I have a theory that the Joshua Leisk protocol makes neutropenia worse by pushing the body to do more that it can't actually sustain. But it's just a theory.

Have you had both vaccines? When did you get them? Joshua believes vaccines cause neutropenia. I personally think that might be bullshit and it's the dynamics of ME which cause the neutropenia to worsen and when the protocol ameliorated symptoms sadly ME is still very much there.

I sincerely hope I'm wrong but my last reading was 1.29 not far off yours.

I've got a hematology referral today.

My last resort is to buy erythrymycin myself and self administer a 10 day course of abx as an experiment to see if it gets rid of what might be a chronic infection in order to normalise neutrophils.

I'm sure @heapsreal has dealt with this for decades. Unsure if abx helped you where this is concerned heaps? Will try to find your email I've lost it...
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@Nuno

Are your neutrophils still declining?

You have the same pattern of neutrophil declination as me.

Are you taking oat bran every day? If so how long have you been taking it for? Do you know which months (when you started it)? I have a theory that the Joshua Leisk protocol makes neutropenia worse by pushing the body to do more that it can't actually sustain. But it's just a theory.

Have you had both vaccines? When did you get them? Joshua believes vaccines cause neutropenia. I personally think that might be bullshit and it's the dynamics of ME which cause the neutropenia to worsen and when the protocol ameliorated symptoms sadly ME is still very much there.

I sincerely hope I'm wrong but my last reading was 1.29 not far off yours.

I've got a hematology referral today.

My last resort is to buy erythrymycin myself and self administer a 10 day course of abx as an experiment to see if it gets rid of what might be a chronic infection in order to normalise neutrophils.

I'm sure @heapsreal has dealt with this for decades. Unsure if abx helped you where this is concerned heaps? Will try to find your email I've lost it...

Abx didnt directly help my neutropenia at all but a few different types i have felt better on and some i felt worse probably a herx and later better.
I think the low neutrophils is a big sign of something bacterial going on, although other immune deficiencies need to be ruled out.
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Interesting, so in your case it's not a chronic infection then, or you'd expect the neutrophils to go up (even if that was just temporary). There's only so many things it can be really, all my autoimmunity markers are negative, I think I've had 8 tests at this point. ANA tested twice and one lupus antibody specific test as well.

I felt dramatically better last year after 15 days but I did end up taking 3 seperate anti biotics. But yes other immune deficiencies could be a thing too.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Interesting, so in your case it's not a chronic infection then, or you'd expect the neutrophils to go up (even if that was just temporary). There's only so many things it can be really, all my autoimmunity markers are negative, I think I've had 8 tests at this point. ANA tested twice and one lupus antibody specific test as well.

I felt dramatically better last year after 15 days but I did end up taking 3 seperate anti biotics. But yes other immune deficiencies could be a thing too.

If its lyme or a coinfection like mycoplasma they can be almost impossible to eradicate but improvement comes from reducing infectious load.
Ive had plenty of immune testing and have low nk function and elevated t cells which came down with antivirals. Immunoglobulins were tested and igg was slightly high, igm and ige were normal but that was awhile ago. Im only guessing but think theres something bacterial going on that requires long term abx. Which ive done before but relapse 2 yrs ago due to supply issues with meds due to covid etc. So im starting over again so to speak.
 

Nuno

Senior Member
Messages
112
@Nuno

Are your neutrophils still declining?
Apparently yes... it keeps getting lower and lower and I don't understand what's going on?

Are you taking oat bran every day? If so how long have you been taking it for? Do you know which months (when you started it)? I have a theory that the Joshua Leisk protocol makes neutropenia worse by pushing the body to do more that it can't actually sustain. But it's just a theory.
Actually yes, I take Oat Bran daily not in ridiculous amounts tho, something like 30 to 40g.

Have you had both vaccines? When did you get them?

I don't think vaccines are related, at least in my case: 1st) because I only took one shot since it was Jennsen vax, that was in early August. 2nd) because my neutrophils were already following a declining pattern before vaccine


I am also p interesting in trying antibiotics, something like Penicilin injection would be ideal to see what's up with my body. Anyways brother, keep me updated on your hematology appt today!
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Did you start the oat bran before the vaccines @Nuno ?

Beta glucans feed neutrophils and monocytes. I never had neutropenia before I started the protocol so in my case possibly different to yours it could be created by using them too quickly to be replaced. Especially if we are taking 6500mg of beta glucans per day. That's quite a lot.

It's just a theory though. I've stopped all beta glucans and switched to Lauricidin just so I don't dig an ebv hole while I am off the glucans really. Lauricidin has never made my neutrophils tank.

So my plan is to get tested again in a few weeks and see if neutrophils have normalized. If they continue to do so I reckon the beta glucans were using them up faster than they could be replaced.



Interesting about the hemaglobins heaps. Mine were ok in 2016. But I've never got the sub classes tested. Which might show a different story.

Also even though my neutrophils have been consequitively dropping I actually felt great 5 weeks ago. So the two don't seem to be related ME wise. Even if the ME must be causing it none the less.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Mild neutropenia is a well-known symptom of Epstein-Barr virus, HHV6, and other viruses which are pretty common in ME/CFS patients, though many doctors miss these and don't treat them. Antibiotics would not help. Antivirals - Famvir, Valcyte, Valtrex, etc would help.

Mycotoxins from mold exposure are also a relatively common problem in ME/CFS and can cause neutropenia.
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Well if it's ebv then josh's protocol doesn't work at all, as it is meant to target ebv and hhv-6. Personally I think it works because the symptoms of those two illnesses disappear on this protocol and that was before I added in the extra things like more magnesium etc.

No UK doctor is going to prescribe anti virals though, they will never give them out here, even if you request them. There's only one doctor who will but he's in London and costs a small fortune.