Cause of my cfs

[Hip]

I just came across this study on erythrocyte aggregation / rouleaux, which says that when red blood cells aggregate into rouleaux formations, this can affect blood flow through tiny capillaries:

RBC aggregation is generally known to increase microvascular flow resistance and consequently reduce blood perfusion to the organs. An extended lack of perfusion over time causes capillaries to become dysfunctional, a first stage towards ischemia.

Fibrinogen is the most important factor in the blood which causes rouleaux formation. Thus in order to reduce rouleaux, we need to reduce blood fibrinogen levels. This can be done in the following ways:

Nattokinase reduces fibrinogen by 7%. Ref: 1

This review (full paper here) has a lot of info on fibrinogen inhibitors, and their effects on fibrinogen levels in various diseases: the fibrate drugs bezafibrate, fenofibrate, clofibrate and ciprofibrate reduce fibrinogen by around 10% to 30%. Ticlopidine reduces fibrinogen by 11% to 17%. Garlic reduces fibrinogen. Moderate alcohol consumption lowers fibrinogen levels. Studies on the effect of fish oil on fibrinogen have been contradictory. Smoking increases fibrinogen levels by around 10%. Stress increases fibrinogen.


Apparently red light therapy applied intranasally can have a strong effect in reducing rouleaux formation. See these articles:

Lower Your Blood Viscosity With VieLight (the VieLight device is discussed on this thread).

Why Blood Cells Should Be Free of Aggregration II – Mediclights Research

Lowering high blood pressure naturally through intranasal light therapy (red light of 630 nm wavelength used)





Here is a microscope picture I took of my own blood in May 2016; as you can see there are a lot of rouleaux (the long lines of disc-shaped red blood cells all stuck together):

Rouleaux Formations In My Blood​

So possibly these rouleaux in my blood could be impeding blood flow in the small capillaries, and thus reducing oxygen delivery in the tissues of the body and brain.

This paper says that:

The extent of red blood cell (RBC) aggregation has widely been accepted as a reliable indicator of inflammatory processes.

So I guess my blood sample may show I have a lot of inflammation going on.

 

[taniaaust1]

I was looking forward to responses and I wasn't expecting that. I thought you'd be like "wow" rather considering if this the cause for others...etc, I'm not making this up, I'm sure that this is the cause of my condition, there's absolutely no doubt about it.

I guess that 70000 years (which doesn't sound like much to me in evolutionary years) didn't eradicate the condition because it develops slow enough for reproduction and doesn't endanger the group as a whole to name just a couple.

I guess I understand your skepticism but I can assure you I am not mistaken.

Hi there, Im sure many people are instinctly know what foods their bodies do best on and it seems you have found it for you. Im glad to hear you have found something which works for you . I may turn out to be not connected to the africa thing thou. Over time Ive realised I had 4 different kinds of food issues including that I have hyperinsulinemia so hence dont do well with carb foods

 

[taniaaust1]

There is also a more simple explanation. Many of those vegetables you mention contain nitrates, which through a process in the body will convert to nitric oxide, which in turn acts as a vasodilator. Quite a few CFS/ME patients on this forum have seen benefits from nitric oxide modulating supplements, for example this poster. Some doctors believe CFS/ME is partly a blood circulation disorder and this is also something that Fluge/Mella have hinted in their recent study (some of their patients have seen improvements in symptoms after high dose Arginine/Citrulline).

There is also some research that backs up that this may be partly a blood circulation issue too. One specialist blood lab who did a study on ME/CFS found that most of us (it may of been as high as 98%) have problems with hypercoagulation... hughes syndrome.

 

[taniaaust1]

Do you have cold hands and feet, or any of the other symptoms often associated with poor circulation, such as numbness, tingling, pain? See: symptoms of poor circulation.

Sometimes problems around circulation can be going on and not easy to tell. I'll use myself as an example

eg I dont always get dizziness before I collapse due to POTS yet my collapse is being caused by low blood volume and lack of blood going to ones brain so one could say a kind of poor circulation going on with that (these collapses are fixable for me with a couple of bags of 1Litre saline given to me by an IV.. so my circulation is then boosted by raising my blood volume).

I still have POTS collapses though I dont any more get chillblaines and raynauds.

 

[taniaaust1]

Then you describe a lot of not domesticated animals, the meat of which you profit from. And domesticated ones, which you do not like. Science tells that domesticated animals are far less healthy:

• measurable increases in postprandial inflammation
• measurable differences in omega 3 and omega 6 (this depends though not so much on the animal, to my knowledge but rather on grass fed / grain fed. To put it simply: an animal fed corn will contain the omega 6 from corn. And you, fed these animals, will contain the o6, too. Eat crap -> be crap -> feel crap.

If anyone is interested in these research things, I am glad to dig out the papers to prove what I say.

that's a very good point. There is a huge difference apparently in nuturients from free range chickens to cage chickens. Domestic animals too can be giving things like antibiotics etc. If eggs can be so different between these things, maybe what's in the nutrients of the animals could be too if one compared a zebra to a farm bred cow. Also now days some domestic animals may be being fed things like genetically engineered corn.

 

[taniaaust1]

I just came across this study on erythrocyte aggregation / rouleaux, which says that when red blood cells aggregate into rouleaux formations, this can affect blood flow through tiny capillaries:


Fibrinogen is the most important factor in the blood which causes rouleaux formation. Thus in order to reduce rouleaux, we need to reduce blood fibrinogen levels. This can be done in the following ways:
.

there was someone many years who helped his ME/CFS and was helping others too by a ME/CFS protcol he'd developed. Part of his protocol had to do with fibrinogen (I hope I got this right) as he thought these clumps in the blood helped protect some nasty things in the blood which he was targeting to destroy in a section of his protocol (it was either bacteria stuff or viruses or both).

 

[Lolinda]

Here is a microscope picture I took of my own blood in May 2016; as you can see there are a lot of rouleaux (the long lines of disc-shaped red blood cells all stuck together):

I am impressed! You did your own rouleaux test. Guess what, I have been seaching to get such a test and failed. Could you help me in getting this done?
- what kind of microsope did you use?
- do you know by chance a lab for this?
- there must be some hidden problem why this test is not normally offered by labs ... what could that be?
- how do you know if the rouleaux you see are many or little?

- and most importantly: does this test offer any advantage over an ordinary erythrocyte sedimentation rate (ESR)? When there are many rouleaux, rbc should sink faster to the ground. Just like a stone sinks faster than mineral dust made of the same stone. My ESR is as good as good can be. How is yours if I may ask? or, better, how was yours at the time of making the photo? Can there be any situation where the ESR is good but there are a lot of rouleaux?

thanks!!!

 

[patolos]

Have you been tested for anemia, by the way?

No it's definitely not anemia, but yeah always tested normal including recently, I'm gunna get a bunch of circulation tests done including that rouleaux (called looking at a blood film in the UK) thanks for the ideas for tests to hopefully get to the bottom of this or at least discount certain avenues and then do more circulation tests not thought of yet. From what you and others and studies have said it seems like a few possible circulation differences in cfs/me known of so far so I'm half expecting more than one thing out of balance.

If my red blood cells are rouleaux too that could explain it ((also because red blood cells carry oxygen, if they are all clumped together they won't be delivering it as efficiently to organs and so on explaining maybe some of the fatigue)).

 

[JES]

I am impressed! You did your own rouleaux test. Guess what, I have been seaching to get such a test and failed. Could you help me in getting this done?
- what kind of microsope did you use?
- do you know by chance a lab for this?
- there must be some hidden problem why this test is not normally offered by labs ... what could that be?
- how do you know if the rouleaux you see are many or little?

- and most importantly: does this test offer any advantage over an ordinary erythrocyte sedimentation rate (ESR)? When there are many rouleaux, rbc should sink faster to the ground. Just like a stone sinks faster than mineral dust made of the same stone. My ESR is as good as good can be. How is yours if I may ask? or, better, how was yours at the time of making the photo? Can there be any situation where the ESR is good but there are a lot of rouleaux?

thanks!!!

CFS patients generally tend to have very low ESR according to Dr. Cheney et al., typically around 1 or 2 (I myself have tested several times as 1), so I think low ESR can actually be an indicator for hyperviscocity. It's also something that is discussed in this thread.

I self-treated myself against this presumed hyperviscocity last spring by taking bromelain, which is a proteolytic enzyme that reduces fibrin. I noticed a massive improvement within 6 hours, circulation was much better and it felt like my feet were in a constant shower, no more cold hands. Unfortunately, after around 5 days I started feeling worse, and it seemed as if my circulation shut partly down again. Also other symptoms got worse, forcing me to eventually stop. So it may be that this hyperviscocity is a protective action of the body, as my symptoms of chronic viral infection got worse after this experiment.

 

[Valentijn]

CFS patients generally tend to have very low ESR according to Dr. Cheney et al

No, they don't, according to the published research.

 

[Lolinda]

No, they don't, according to the published research.

Cheney et al., typically around 1 or 2

I read both of your posts with much interest. Would you mind to reveal your sources? I am looking forward to an interesting discussion. I think this is an important point and this thread could profit a lot from adding in concrete research. Also, more often than not, CFS studies report inconsistent results. This is not bad at all. Rather, to the contrary, it may mean that there are different cohorts / subgroups.

self-treated myself against this presumed hyperviscocity last spring by taking bromelain, which is a proteolytic enzyme that reduces fibrin. I noticed a massive improvement within 6 hours,
....
Unfortunately, after around 5 days I started feeling worse, and it seemed as if my circulation shut partly down again. Also other symptoms got worse, forcing me to eventually stop. So it may be that this hyperviscocity is a protective action of the body, as my symptoms of chronic viral infection got worse after this experiment

Very simillar experiences! Tried nattokinase, which does the same (see the post above by @Hip ) . My ESR and CRP have always been excellent. I would offer an additional element that may contribute to an explanation: These enzymes degrade the fibrin crosslinks in biofilms. What comes out of those biofilms is not so nice. So, on one hand, one interferes with mechanisms of the body as @JES indicated, at the other hand one causes an influx of microbial toxins. That wont go well.

I asked you to kindly provide your sources. So here is mine:
http://www.ncbi.nlm.nih.gov/pubmed/26044292
"...biofilms exhibited increased antimicrobial resistance over time (>48 hours) but were always susceptible to dispersal by the fibrinolytic enzymes plasmin or nattokinase. Biofilms recovered from infected central venous catheters in a rat model of device-related infection were dispersed by nattokinase, supporting the important role of the biofilm phenotype and identifying a potentially new therapeutic approach with antimicrobials and fibrinolytic drugs,..."

 

[Valentijn]

Would you mind to reveal your sources?

Go to scholar.google.com and search for CFS and ESR. I posted the results on the forum a year or so ago, but can never find that post again. From what I recall, no study showed ESR results for patients which were significantly lower than controls. Oxford results were the same, and I think Fukuda/CCC showed higher ESR.

 

[Hip]

I am impressed! You did your own rouleaux test. Guess what, I have been seaching to get such a test and failed. Could you help me in getting this done?
- what kind of microsope did you use?
- do you know by chance a lab for this?
- there must be some hidden problem why this test is not normally offered by labs ... what could that be?
- how do you know if the rouleaux you see are many or little?

Some time ago I bought a professional microscope for just £60 from Brunel Microscopes in the UK (it was on special offer), similar to the Brunel SP22 model. My model has a maximum magnification of x800, which is what I used for my above microscope image of my blood cells. To take a picture, I just hold a digital camera or smartphone camera near the microscope eyepiece.


However, I am not quite sure whether my pictures of rouleaux formations in my blood are clinically valid, or just are a spurious result.

Rouleaux formations are often found in the alternative health practice of live blood analysis (LBA), which is criticized for being pseudoscientific.

I read here that:

The "rouleaux" that show up in LBA occur because blood has been put under a microscope without first being suspended in appropriate solution to prevent agglutination. If, under controlled conditions, rouleaux are found in the blood, they can be markers of various diseases, but their occurrence in LBA is explained by blood's tendency to clot when left to dry on a slide.

And here it says:

When the red blood cells stack on top of one another and appear like stacks of coins, it is called ‘rouleaux’ formation. By observation of the rouleaux, the LBA practitioners diagnose ‘acid in the blood’, while other practitioners suggest a weak pancreas.

Rouleaux of red blood cells under the microscope is an artifact which occurs when the blood sample at the edge of the coverslip start to dry out; where large number of red blood cells clumps together; or when the blood start to clot when contacted with the glass. These artifacts are observed in only small, selected areas on the slide, while near the center of the slide the red blood cells are free floating.

My blood pictures were taken with fresh blood, not when the blood has dried out on the slide; in fact, looking down the microscope, you can see the red blood cells still moving and floating about for several minutes before the sample slowly starts to dry out.

Also, my rouleaux are found across the entire slide, not just in one part of the slide.

I can get rid of the rouleaux by pressing down harder on the microscope slide coverslip, thus squashing the blood sample between the glass of the microscope slide and the glass of the coverslip. However, you would expect such pressure to get rid of rouleaux, as pressing down harder on the coverslip is going to narrow the gap between these glass plates, to the point that the gap is only high enough for one blood cell (and therefore there is not enough room for the rouleaux to form).

This YouTube video of the dubious "live blood analysis" practice shows rouleaux formations in the blood of various people, including a young ME patient, and the video also shows the "after treatment" images, where the rouleaux formations are much reduced.

However, as I mentioned, I found that you can get rid of the rouleaux formations very easily just by pressing down a bit harder on the coverslip when you prepare you slide; so unless you are preparing your slides in an identical and consistent manner each time, you will not be able to accurately gauge how much tendency there is for the red blood cells to form rouleaux.



So these rouleaux are interesting, but I do not have any expertise in microscopy, and I am not sure if there is clinical significance to rouleaux seen on a microscope slide. When I looked at the blood of my elderly parents, they both showed the same rouleaux formations (but all my family caught the same virus as me, which appears to induce chronic inflammatory effects in many people, such as chronic sinusitis and a chronic sore throat; and my mother has autoimmune conditions, which can cause rouleaux). Might it be that most people's blood forms rouleaux on a microscope slide under certain circumstances?

 

[TigerLilea]

Fibrinogen is the most important factor in the blood which causes rouleaux formation. Thus in order to reduce rouleaux, we need to reduce blood fibrinogen levels.

there was someone many years who helped his ME/CFS and was helping others too by a ME/CFS protcol he'd developed. Part of his protocol had to do with fibrinogen (I hope I got this right) as he thought these clumps in the blood helped protect some nasty things in the blood which he was targeting to destroy in a section of his protocol (it was either bacteria stuff or viruses or both).

Wasn't that Ken Lassesen's theory about CFS? He has gone into remission three times over the years.

 

[TigerLilea]

I just came across this study on erythrocyte aggregation / rouleaux, which says that when red blood cells aggregate into rouleaux formations, this can affect blood flow through tiny capillaries:

So I guess my blood sample may show I have a lot of inflammation going on.

@Hip Is this something that would show up on a standard blood test or would the lab have to do a special test to see the rouleaux formations?

 

[patolos]

@Hip Is this something that would show up on a standard blood test or would the lab have to do a special test to see the rouleaux formations?

In the uk its not standard, it's a test you have to ask for called a "blood film".

FYI the tests I've requested to my GP are: full blood count, blood film, esr, crp, clotting screen, Doppler ultrasound.

 

[patolos]

I am not quite sure whether my pictures of rouleaux formations in my blood are clinically valid, or just are a spurious result.
...
It may be that most people's blood forms rouleaux on a microscope slide.

My mum, an ex uk GP whose done the test herself as a medical student, says the blood film is done by taking some of the blood count blood, putting the blood on a microscope slide, dipping it in methanol which preserves it in its' current state, staining it (depends what is being looked for what stain is used, details of that probably can be found online), then looking at it under a microscope.

 

[gregh286]

rouleaux would show as a high esr.
i used to get massive crashes after some foods like patolos....or wine etc.
was like getting hit by a bomb.....i just had to get laying down pronto....totally out of it.
i get bouts of angioedema also....and i always thought the 2 (angioedema and the bomb) had the same underlying mechansim of a crazed immune distress.
to take a wild guess, i would be thinking.in lines of leaky gut.

 

[Hip]

I self-treated myself against this presumed hyperviscocity last spring by taking bromelain, which is a proteolytic enzyme that reduces fibrin. I noticed a massive improvement within 6 hours, circulation was much better and it felt like my feet were in a constant shower, no more cold hands. Unfortunately, after around 5 days I started feeling worse, and it seemed as if my circulation shut partly down again.

When I was compiling the above list of fibrinogen inhibitors yesterday, I noticed that for some of them, the effect on fibrinogen is a little precarious (see the full version of this paper on Sci Hub, which reviews various fibrinogen inhibitors).

For example, from that paper:

The extensive literature on pentoxifylline and fibrinogen is contradictory. When pentoxifylline (1200 mg per day for 25 days) was given to patients with cerebral ischaemia fibrinogen levels fell significantly. Using the same dosage for 4 or 5 weeks in claudicants had no effect, but giving the same dosage for 90 days to claudicants did lower fibrinogen.

Also, although I read in articles that bromelain can lower fibrinogen, I could not find a study that demonstrated this, apart from this one, but it does not clearly state that bromelain reduces fibrinogen, at least in my cursor reading.

That's why I did not include bromelain in my list. I am not saying bromelain does not reduce fibrinogen; it's just that I could find a clear statement anywhere that it does.

 

[Hip]

it's a test you have to ask for called a "blood film".

I found here some info regarding what blood film (aka: blood smear, peripheral blood smear) can tell you:

Peripheral blood film
A peripheral blood film will provide information on the following:

• The erythrocytes (RBCs): a note will be made of their size, shape, any membrane changes, colour and stippling. Any inclusion bodies (eg, Howell-Jolly bodies or malarial parasites) will also be noted. Other abnormalities include red cell rouleaux, red cell nucleation and the presence of reticulocytes.

• The leukocytes (WBCs): the number and morphology of these cells are noted, as well as abnormalities such as toxic granulation or dysplastic changes. Presence of abnormal cells is important (eg, leukaemic blasts).

• Platelets: number, size and shape are commented on.

• Other abnormalities such as parasites, plasma cells and occasional circulating carcinoma cells may be found.