Looking for direction - just got blood results

[Rubes]

Sorry if I've got the wrong forum - I searched and a number of blood related posts were in the general IBD discussion.

Sorry if this is ridiculously long - I'll try to be short:
> I'm male and mid-thirties.
> Have experienced two years of fatigue that got bad enough that I had to take weeks off work.
> Fatigue = non-restorative sleep, unable to concentrate, poor memory, daily feeling of being in a fog.
> After roughly 4 months of fatigue I went to my family doctor and got a blood test and was later telephoned to be told everything normal. Advised it was stress related and to try holistic things to reduce stress - this was roughly 18 months ago.
> Fatigue continued and I was referred (at my own insistence) to a respiratory consultant to rule out sleep apnea. He felt the symptoms were not fully indicative of sleep apnea and felt they were immune system related.
> My brother has a confirmed Crohn's diagnosis so this got me thinking along these lines.
> My brother advised I use an app to track symptoms and they include: very frequent mouth ulcers (up to 5 at a time, though I've had ulcers for many many years, and no exaggeration I have probably had more days with mouth ulcers than without them for years), majority of stools are either almost constipated or almost diarrhea (on the Bristol stool chart they are typically Type 2 or Type 5), no visible blood in stool but sometimes one or two small stools would be much darker than the others, sometimes I would feel urgency to use the toilet and would experience abdominal pain (I've never been woken during sleep to use the toilet), over one month I tracked 22 days of abdominal pain (not at a level to cripple me, just discomfort), I would pass a lot of wind (socialising I sometimes have to leave to pass it as it become quite painful), aches in my hips, some headaches, a number of colds that drag on (I'm not big on taking anti-biotics for colds but one dragged on for over 10 days so I got them then) and the on-going fatigue.
> My diet consists of 95% fresh food / freshly cooked food and 5% takeaways. I take bio-cult, yoghurt with live bacteria, multi-vitamin and mineral tablets that provide almost 100% of everything needed.

My normal family doctor is of the opinion I am just stressed. I went to another doctor in the same surgery and requested a GI referral as my brother told me for years he was met with family doctors telling him he was just stressed, and it wasn't until he lost 6 stone and basically couldn't retain any food/liquids that a doctor sent to the emergency department.

The fun started when I went to my family doctor to request copies of my bloods so I could bring them to the GI appointment - these are the bloods I was telephoned over a year ago to be told they were all normal. These bloods show that my overall white blood cell (WBC) count was below normal and that specifically my neutrophils were below normal while my MCHC was above normal. These results were highlighted in the lab report as being abnormal but I was not told about them. The second doctor I went to has just told me that he spoke with my first doctor who advised against the GI referral so no referral was made - I'm livid - I insisted on the referral which is now being made.

As I understand it the WBC in Crohn's is typically HIGHER, and not LOWER. So I'm a bit unsure about this and a bit unsure of where I am at with things as I feel like I'm being met by doctors that are fobbing off what I'm experiencing. At the time of the bloods being taken I had no infections/colds and was not on any medications, so am unsure why the WBC would be low.

The numbers don't seem to suggest they are massively abnormal but they were enough to be highlighted by the lab. The specific blood results were:
WBC = 3.7 (Lab normal range = 4.0-10.0)
Neutrophils = 1.7 (Lab normal range = 2.0-7.0)
MCHC = 36.0 (Lab normal range =31.5.34.5)

I feel like I'm basically alone trying to push doctors to at least explore what could be going on. I'm feeling like I'm being seen as a possible hypochondriac or something - hell maybe that's true but I haven't had a meeting with a family doctor who's gone: "Right that's doesn't sound good, lets think of what might be going on..." I guess my main question is around whether the low WBC means it's unlikely to be Crohns and I need to be thinking in some other direction?

Thank you for any advice.

 

[kiny]

As I understand it the WBC in Crohn's is typically HIGHER, and not LOWER.

There's really no ''typical'' WBC profile among crohn's disease patients. It's not a diagnostic tool.

A WBC test can only test for circulating Leukocytes in the blood. It can see blood monocytes for example, but it can't see mature macrophages in tissue. It can see lymphocytes, but it can't see CD4+ in the lamina propria in the intestine.

WBC doesn't tell you anything about disease activity in a crohn's disease patient.

Lymphopenia (a lack of circulating lymphocytes) is pretty common among crohn's disease patients. 1 out of 3 on 6MP also develop a form of lymphopenia during treatment. But many other CD patients have normal levels of circulating lymphocytes.

The only non-invasive tests we have to check for inflammation in crohn's disease are CRP and Fecal Calprotectin.

CRP tests are often used to test inflammation in Crohn's disease patients, but around 15% of patients who have intestinal inflammation, show no abnormal CRP.

Fecal Calprotectin tests are also done, but again, they are not always reliable, medication can influence FC resutls, and there are wide variations between different testing kits.

Antibody tests are also not very reliable. ASCA and anti OmpC is sometimes tested for diagnostic purposes. But we don't even understand what they mean. We don't understand why ASCA and anti OmpC are related to crohn's disease. Is it a reaction against yeasts and E Coli? We don't know.

The only sure test is an colonoscopy, where a biopsy rules out other diseases based on histology.

Anyway, I don't think you have crohn's disease, I think you worry too much.

 

[D Bergy]

I do not believe you have Crohns Disease, at least not yet.

I do think you have one of the microbes that I have been battling that is involved with my particular case of Crohn’s. Its not rare or unusual but can wreak a lot of havok when it gets out of control. It sounds like mycoplasma to me and likely mycoplasma pneumonia.

When it exists in the body in large amounts it can cause mouth sores, always will cause crushing fatigue and doctors only consider it if you develop pneumonia. It doesn’t cause pneumonia in me only rarely. But I can tell long before that by the fatigue and some but not all of the other symptoms you describe

The quick way to find out is to get a prescription for Zithromax. In a few days you will feel waaay better. It works fast but will only knock the mycoplasma down. It will not eliminate it.

Most normal peoples immune system will keep mycoplasma under control. If you have this wonky immune system that many people who develop autoimmune disease has, you will fight this again.

I have been able to control my level of mycoplasma by means of an alternative treatment but not eliminate it. Recently I started taking an herbal systematic antibiotic called Cryptolepis. It kills mycoplasma and lots of other microbes such as staph. Of course that is an option you would have available also.

It could be a virus of some kind also, but very unlikely for that long of a time period.

I would put a sizable bet on mycoplasma.

Good Luck

Dan

 

[D Bergy]

By the way, the Cryptolepis tastes like an old inner tube boiled in dishwater. Not tasty.

When I started taking it I experienced some initial brain fog for a couple of days and after that nothing in the way of any other negative effects. Just upped my dose and has not caused any problems.

If you find the cause or resolve your symptoms please let us know.

 

[Rubes]

Just to add the things I currently do to try to improve my health / fatigue:
> Breakfast cereal high in bran with flaxseed + multi-vitamin + multi-mineral
> Yoghurt containing live bacteria + fruit
> Bio-Kult pro-biotic
> Green tea
> Lunches/dinners consisting of all fresh veg and cooked meals
> Wholegrain breads
> Mindfulness
> Personal therapy

There's really no ''typical'' WBC profile among crohn's disease patients. It's not a diagnostic tool.

Anyway, I don't think you have crohn's disease, I think you worry too much.

Thanks for all of that info - really helpful!

You could be right that I worry too much though to be honest if I was told I had Crohn's I would be happy because I'd have an answer to how I feel and a treatment route to pursue. Currently I feel in the dark and trying to find a cause has been more stressful than anything. Over two years of fatigue to the point I have had to take extended leave from work has not been fun .

I was also never thinking Crohn's until the respiratory consultant said he felt the symptoms were immune system related - he initially thought leaky gut though noted it is not a diagnosis that is acknowledged by the medical profession. It was only then that the possible connection to my brother's Crohn's was considered. Plus when speaking with my brother he said he went through an almost identical experience and was similarly constantly told he was just stressed and needed to find ways to relax...then a serious flare happened. He was told it couldn't be said for definite but that if it had have been caught sooner when he was first reporting symptoms then he might not have ended up in the emergency department over a year later.

It sounds like mycoplasma to me and likely mycoplasma pneumonia.

If you find the cause or resolve your symptoms please let us know.

Thanks for the steer to consider mycoplasma! I have not come across that in my reading.

I have had a lot of colds over the past year in particular and some where I cough up a lot of phlegm - I'm not big on going to docs for colds so mostly kept taking painkillers myself. The one cold I went for anti-biotics never fully cleared and I think is slowly coming back (I'm coughing as I type). I always felt that the constant mouth ulcers are a pretty clear sign something isn't right.

It was frustrating to find my blood results with highlights to indicate some below normal results. I would have thought these would have been explored further given my reports of constant fatigue. I get that they aren't rock bottom blood results but they were enough for the lab to highlight them. I have read that low WBC could be linked to an infection that is ongoing to a point the body just can't make enough but makes enough to keep it almost under control so you may be onto something.

Just since I came across it in my attempts to pin-point what it could be, here's an interesting article I read about Mycobacterium avium paratuberculosis and Crohn's.

I will definitely post again if I get any indication what it could be .

 

[D Bergy]

Mycobacterium avium subspecies paratuberculosis is often if not always involved with Crohns. The studies seem to point that direction and my personal experience tells me it was involved in my Crohn’s also.

The bacterium has also been suspect in type 1 diabetes, Lupus and some thyroid dysfunctions.
I am sure more conditions will be discovered in which it may be involved in future research.
The difficulty involved with isolating and culturing it has likely prevented its full potential in disease to be fully understood.

i have a hypothesis concerning mycoplasma and intestinal wall permeability or leaky gut.
Certainly not proven but I am operating under that current assumption.

Mycoplasma is intracellular and is parasitic in that it basically takes energy directly from your cells which is why in large amounts it causes such bad fatigue. What it takes from the body is lipids and essential amino acids. I currently believe that the reduction in the amino acids can cause a breakdown in the intestinal lining which leads to leaky gut. There are other microbes also that can further this breakdown and cause inflammation directly, but I won’t get onto that.

The reduction in lipids I believe can cause depression and or anxiety in some people which furthers the destruction of the intestinal tract through excessive worry, stress etc. This cycle only furthers the disease process by weakening the immune system even more allowing more bad bacteria to proliferate.

Two things helped me before I Had an understanding of mycoplasma. The first was Krill Oil. I took it because it was an anti inflammatory product. The result I had was total resolution of depression. I really had no explanation at the time other than I was apparently lacking omega 3 fatty acids. That wasn’t a very satisfactory answer because I really should have no less than any other average person. Shouldn’t everyone have depression then?

it does make sense if something is stealing it from me and hence the hypothesis.

My next question was why does L-Glutamine help my intestinal tract so much? Had that one rattling around in my head for quite some time. It isn’t needed by most people and most people will not notice any difference using it. Why doesn’t everyone benefit from it?

Most people don’t have huge amounts of mycoplasma stealing their essential amino acids. I do and possibly by adding this non essential amino acid I can get some gut repair benefit? Unproven but its the best explanation I have at this time.

The uptake is you can try both L-Glutamine and Krill Oil and see if you have any response to it. Both are safe unless you are allergic to shellfish. In that case Krill Oil is not an option but there are other products you could use instead.

Thats all I got. Lots of speculation but there is always a reason for things and I hate not having at least a plausible explanation for why.

Dan

 

[Scipio]

"..., majority of stools are either almost constipated or almost diarrhea (on the Bristol stool chart they are typically Type 2 or Type 5), no visible blood in stool but sometimes one or two small stools would be much darker than the others, sometimes I would feel urgency to use the toilet and would experience abdominal pain (I've never been woken during sleep to use the toilet), over one month I tracked 22 days of abdominal pain (not at a level to cripple me, just discomfort),"

Is the abdominal pain relieved by bowel movement? If so that would be suggestive of IBS. Abdominal pain relieved by bowl movement is one of the classic symptoms of IBS. Alternating between constipation and diarrhea is also consistent with one type of IBS - the so-called "IBS-alternating" or IBS-A.

Your symptoms and blood tests don't sound very much like Crohn's to me., but it may be worthwhile to consult with a GI to see whether it might be IBS (or something else).

 

[Rubes]

Thats all I got.

That is loads and really really helpful Great to here that you have found those helpful - it sounds like you really did your research and found ways to help yourself, so thanks a million for passing on your experiences, it's really appreciated. I'm gonna spin out and get some krill oil and L-glutamine and see if I get a response

Is the abdominal pain relieved by bowel movement?

Your symptoms and blood tests don't sound very much like Crohn's to me., but it may be worthwhile to consult with a GI to see whether it might be IBS (or something else).

The pain is not relieved by bowel movements - that was something that I was surprised by. I also don't think my symptoms match Crohn's to be honest - I don't have weight loss, skin tags, visible fistulas, or any visible blood in my stool, though when self-examining I do have what I believe are external hemorrhoids though am unsure for how long I have had them as I never checked before and was never examined. But exactly as you mention, I thought a GE might at least have some advice or steer me in the right direction for what it could be. I don't think I match ulcerative colitis either as best I can tell.

 

[Delta_hippo]

Just to be safe might be worth getting doctor to check CRP (blood test for systemic inflammation) and FCP (stool test for Intestinal inflammation) as that will inform whether crohns is a possibility - it is a sneaky disease and you have a family link so better safe than sorry would be my view.

 

[eleanor_rigby]

I would pursue the following blood tests:
CRP
ESR
B12 (and possibly other vitamin or minerals)

It sounds like you have a weakened immune system - perhaps you are deficient in something.

Could you have been exposed to a virus and now experiencing post-viral fatigue? A friend of mine had this after glandular fever. He had severe fatigue for two years to the point he had to defer University. He made a recovery by regularly exercising at the gym.

 

[SN8888]

You should ask you Dr about Behcet's disease (it's rare, but mouth sores are a major symptom).

Have you been tested for Celiac? Even if that's negative, you could have a gluten issue. I think low neutrophils can be caused by that (also caused by other autoimmune conditions). Check out the Persky Farms Microscopic colitis forum (Google it). I don't believe you have symptoms of microscopic colitis, but their approach is to use EnteroLabs to test for immune reaction to certain foods - commonly gluten, casein (dairy), oats, soy, eggs. If you test positive for IgA antibodies, you should avoid these foods. Fatigue, brain fog, GI problems (etc) can come from continually eating things your immune system reacts to (not exactly mainstream medicine, but it makes some sense).

 

[Rubes]

Cheers folks for the further info.

Through health insurance I have access to telephone consultations with separate general practitioners and the one I spoke with said that my low bloods should have been rechecked 4-6 weeks later to ensure the cell count was normal or continued to be low so that further examinations could be appropriately made. I contacted the second doc in my family practice and when I said about my bloods from a year ago he said the normal procedure is to re-check them - so my first doc either missed the low count or does things differently. I'm meeting the second doc tomorrow to have the bloods retaken.

I know from reading posts that it's helpful when someone comes back to give an update for others who may find themselves in similar positions so I'll come back and post again when I get any sense of clarity.

better safe than sorry would be my view.

My thoughts exactly

It sounds like you have a weakened immune system - perhaps you are deficient in something.

Could you have been exposed to a virus and now experiencing post-viral fatigue? A friend of mine had this after glandular fever. He had severe fatigue for two years to the point he had to defer University. He made a recovery by regularly exercising at the gym.

I can't say I've ever had a major virus but over the past two years I've had quite a lot of low grade colds that drag on for weeks. When I was younger I was never sick and if I ever got sick it had to be something real bad for me to complain so to be constantly having colds does feel odd to me.

I think the leaky gut hypothesis from the respiratory consultant was interesting given he had no awareness of my brother having Crohn's. With that said my reading indicates leaky gut, at least within the medical community, is not a diagnosis and is described as intestinal hyperpermeability that is caused by a condition rather than the condition itself. That is, a condition causes permeability rather than permeability causing the condition.

You should ask you Dr about Behcet's disease (it's rare, but mouth sores are a major symptom).

Have you been tested for Celiac?

Check out the Persky Farms Microscopic colitis forum (Google it).

Fatigue, brain fog, GI problems (etc) can come from continually eating things your immune system reacts to (not exactly mainstream medicine, but it makes some sense).

Thanks for the steer - I'll check that out!

 

[Rubes]

Just to throw an update on this for others who may be in a similar position.

Bloods taken again and CRP was normal, but white blood cell count is again below the minimum normal level. I'm getting one more blood test in a few weeks and if it's low again the GP said I'll need to see a haematologist.

The uptake is you can try both L-Glutamine and Krill Oil and see if you have any response to it.

I started taking L-Glutamine powder (5000mg daily in water) and Krill Oil, both on an empty stomach as suggested by the packets. I started on 15th October and within two days I could definitely feel an improvement to a level I'm in the process of getting back to work again! My concentration levels are massively improved and sense of fog has massively reduced. I don't believe it's placebo as I've taken a range of other things to try to find something to improve how I feel and never felt any different taking them. Interestingly I had taken a supplement months ago that had 500mg of l-glutamine in it and I felt a minor boost at the time but not enough to keep taking it - perhaps the current 5000mg is doing the job.

 

[D Bergy]

I think your positive response is likely for the same reason as mine. Mycoplasma is using up your essential amino acids and fatty acids.

The two supplements are a good shorter term solution but if you have enough mycoplasma to reduce those acids then you have far too much. The longer term solution is to reduce the mycoplasma.

Thank you for the feedback.

Dan

 

[D Bergy]

There are studies on pneumonia that is caused by mycoplasma pneumonia that results in a normal or lower than normal white blood cell count. As opposed to bacterial pneumonia which has an elevated WBC count.

I don’t think its a stretch to surmise that a high load of mycoplasma whether it results in pneumonia or not may have a similar effect.

Mycoplasma can alter your immune response to protect itself. Which is an interesting feature since people with Crohns tend to have a dysfunctional immune system.

http://www.healthcommunities.com/pneumonia/pneumonia-diagnosis-prevention-treatment_jhmwp.shtml
more info on mycoplasma:

https://m.scirp.org/papers/95720
Dan

 

[D Bergy]

I have not used this product but it should help with energy when mycoplasma is the cause of fatigue. It does not have the capability to reduce mycoplasma.

http://ntfactor.com/#&panel1-1
Dan