Loose Ends And Chasing Ghosts

I might have made some progress, but some loose ends make me feel like I am chasing ghosts.

The good news is, I think I am making progress. In summer this year my health was tiny bit better then half a year before. Now it is again a tiny bit better than in summer. Alas, I do less, so maybe that is the reason why I feel better… And whenever I try to do something I still get worse. But my tolerance for doing stuff is slowly improving (I think, I have no real measure). I did some light work on Friday, and today (Saturday) I felt the work from yesterday, but could still do some more –  after that I felt awful.

One "trick" I found is that when I feel awful after doing some (light) work, I can feel better when I drink water – more water than I would normally drink (e.g. two glasses when I would drink only one). However when I drink too much, I feel sick… Fear not, I found another "trick": After drinking too much water, I need to take some sugar (a teaspoon or two, or a fruit) to feel better again. (and oh, I forgot to mention: I feel immediately better – within a couple of minutes – after I take a dump. I wish I knew if this is some blood pressure thing, or if this is some liver thing, or what.)

Another thing I noticed: When I take a bit of sugar, my nose "cleans up". Usually it feels a bit congested, but after taking a bit of sugar (which has to contain fructose – glucose alone does not do the trick!) my nose clears up and I can better breathe (BTW, funny thing, sometimes an orgasm clears up my nose as well…). However if I take to much sugar my nose "dries up" a bit. Something is wrong here, and I don't know what.

The improvement is so slow though, that it is painful (not literally painful, but every day seems like the last). And, whenever I do a bit more (maybe an hour or two a day), I get worse again.

And while I gained about one kilogram over the past month (or two), I am still eleven kilogram under my March weight. I have been carelessly eating stuff when I am not hungry, and that's the revenge for this.

What seems to unchanged is that my sleep is not a slightest bit restorative – on the contrary, I feel much better before sleep, than compared after a "good night's sleep". Shucks. In the morning my muscles hurt and they are stiff. My brain feels only half awake in the morning. I need to take a strong coffee, take a hot shower and about 2 to 3 hours to feel halfway like a human being.

Unfortunately there are still some loose ends. A couple of months ago I made an experiment of only eating fish, no more pork. During that time I developed some slight acne again. Which got slightly worse after I stopped fish and ate pork again. I even got some aphthous ulcers.

Now it took some time before the acne wound down again, during which time I removed olives, mustard, bananas and sausages from my nutrition.

Yesterday I ate a banana (not completely ripe), fish (smoked mackerel) and olives and got one slight ulcer.

So what did cause my acne/ulcers outbreak over the past months?

• Some weird fish protein / pork protein thingy
• Olives
• Mustard
• Sausages (or rather the casing of sausages)
• Bananas (possibly unripe?)
• Smoked meat/fish
• Food contaminations
• Toothpaste (certain brand)
• Something completely else
• All of the above
• Some of the above
• None of the above
• No external cause

Back to chasing ghosts…

And lest I forget: I have been occasionally eating some bread, and I do have the impression that I feel worse afterwards. The effect isn't too strong (and I could not swear that it is caused by bread), but I feel kind of "dehydrated" and "dry" for half a day to maybe one day.

Don't Trust The Casing

I have been eating pork and fish lately, no more lamb, no more poultry and what can I say, I had a relative quiet time with regards to acne. But every now and then I got very very weak acne, and now I know why: It's those darn sausages.

And the problem seams not to be what is put inside the sausage, but rather what holds the sausages together. Because, even though the Frankfurters I ate were pork sausages, the casing was sheep. And that was not declared on the ingredient list, only "natural casing" was listed – but the manufacturer confirmed it was sheep when questioned.

Darn, one can not trust those ingredient lists.

I think all animal products from Bovidae (and possibly Ruminantia) are a problem for me. I know that beef/veal/dairy is a problem for me, and I know that lamb is a problem for me. I now know that sheep is a problem as well. I will not touch deer, moose, goat and antelope any time soon, that's for sure.

If this extents to all even-toed ungulates (and therefore Suina are not good for me as well) I will see: I plan to go on a meat-free diet, with fish being the only animal product (been holding this off for months, wanted to do this for long). Let's see where that goes.

Atopic Dermatitis ("Neurodermitis") Caused By Dairy and Eggs?

Another chronic skin condition which is possibly caused by (pasteurized) milk and dairy: Atopic Dermatitis ("Neurodermitis").

The German weekly "Der Spiegel" had this to report in August 2011 (translation mine):

… After Nina Meier's odyssey through doctors offices and many treatments, the turn came with a few words: "Abstain from cow's milk and eggs," advised a general practitioner. "I said to myself, shit, I'll simply try it," says Meier. "It can't get any worse." For one week the symptoms got worse - but then came the turning point. "I could rub off my skin like scabs, underneath new skin came to light. After the old skin had gradually peeled off, it was fine."

Since then she has never been in treatment for their eczema again. With regards to dermatologists she is now skeptical. Nina Meier says she had trusted doctors too much and "ignored nutrition during the search for the cause, because the doctors said nutrition did not play a role". Meanwhile, she can tolerate even a little bit of cow's milk or egg. "And even if my body reacts, I won't get no stressed anymore. Because I now know the cause." …

http://www.spiegel.de/panorama/gesellschaft/jahrelange-fehltherapie-gefangen-in-der-eigenen-haut-a-780722.html

The entire article in "Der Spiegel" is a truly horror story of her various treatments by "evidence based" medical industry – at least it has an happy end for her. What about the countless others who are stuck in this ordeal?

So after Acne, Aphthous Ulcers, Behçet's and Psoriasis, I can add this to my growing list. Why is it the skin, that is the "target"? What is the common mechanism here? I'm sure it will be fascinating to read the mechanism, once medical science will find it out in a couple of decades… I sure hope I live that long.

Et tu, Mutton?

So in addition to cow products (especially dairy and veal), it seems that lamb does at well cause Acne/Behçet's like symptoms for me.

Tough look.

Interesting was that veal caused much more problems than beef, and that lamb is on the same order as veal. Something is different in the meat from those young animals.

If other bovid animals are the same for me? Seems like the entire family of Bovidae might be bad for me – must be some shared protein or something…

Stephen Ralph on Psychiatry, Behçet's, ME/CFS and Misdiagnosis

The achilles heel of liaison psychiatry

Stephen Ralph DCR(D) Retired.

30th March 2013

Hello there,

In recent years I have been considering the reliability of the whole “CFS/ME” diagnostic process.

From personal experience I have encountered numerous doctors who failed to possess the detailed specialist knowledge they needed to make a diagnosis of Behçet’s disease at both GP and specialist level.

From personal experience I have learned that standard blood tests or even CT/MRI scans or indeed other diagnostic tests such as endoscopy can and do fail to detect a complex clinical disease present in a patient.

I have no doubt that there is a diagnostic black hole between the insufficient knowledge of the doctor and pathologies that are not detectable by the basic tests they choose to request which produce negative results they then choose to rely on.

The diagnoses of “CFS/ME” and now Somatic Symptom Disorder have in my view been deployed by liaison psychiatry to exploit that black hole.

Once a diagnosis has been made, that diagnosis is presumed to be accurate by subsequent doctors but in reality there is no standard of diagnosis from one doctor to another which means that the whole diagnostic system – especially for complex clinical presentations – is a total lottery.

The system to challenge a given diagnosis has not been changed in decades.

In the UK a patient has a right to ask for a 2nd opinion but there is no guarantee that the doctor who gives a 2nd opinion will have sufficient knowledge to correctly assess a complex clinical presentation where the usual round of simple tests come back negative.

And, having been given a first opinion of “CFS/ME”; the doctor who considers that patient for a 2nd opinion already has a subjective view of what could be wrong with that patient because they have been re-referred by a GP who will give a medical history that may lean towards a CFS/ME diagnosis because the GP has insufficient knowledge to write an accurate 2nd opinion referral listing all the relevant symptoms that could add up to a rare disease such as Behçet’s disease.

In my own case as an example, my GP had no appreciation that my episode of Epididymitis was relevant to a possible case of Behçet’s and so this issue was not referred to when I was sent to another out of area doctor who formed that 2nd opinion.

With regards to “CFS/ME” a GP or a psychiatrist or a general rheumatologist will give the patient a diagnosis based upon the repeated reporting of a set of “invisible” symptoms over a period of months.

At present, “invisible” symptoms are being ascribed as “medically unexplained” or as a sign of somatisation.

The doctors who make these diagnoses are not specialists in rare and complex diseases such as Behçet’s disease where there is a significant crossover of “invisible” symptoms.

In the case of Behçet’s disease the bulk of Behçet’s research is focused upon those who show all the physical signs yet the majority of those who have Behçet’s do not have to show those physical signs and indeed patients with Behçet’s may show few or no visible symptoms at an outpatient examination.

There is in fact a research black hole representing the majority of Behçet’s patients who do not have all the obvious signs of the disease which in turn misinforms those who rely upon such research to inform them about other potential cases.

In short, the diagnostic system presently in place is stacked heavily against the patient.

Having thought about this for a considerable period of time I have come to the conclusion that the pyramid built by liaison psychiatry that fuels their involvement in “CFS/ME” revolves around a simple foundation assumption that a “CFS/ME” diagnosis handed to a patient must be the correct diagnosis.

If a GP or a psychiatrist carries out tests in conjunction with an immunologist or a rheumatologist; a set of negative test results is all that GP/psychiatrist/rheumatologist needs to give a “CFS/ME” diagnosis.

If that diagnosis has been handed to a patient by doctors who have little or no knowledge of complex sero-negative clinical presentations relating to rare medical diseases then there is a significant risk that the diagnosis he or she is giving their patient is in fact the wrong diagnosis.

As people reading this will know, I was subjected to a medical misdiagnosis by a number of doctor’s including GP’s and specialists.

The number of doctors involved went into double figures over a period of 12 years in total.

Over that period, my many individual symptoms were wrongly ascribed to conditions other than Behçet’s disease but in the end when all those symptoms were put together and compared to the correct diagnostic criteria for Behçet’s disease; a doctor finally looked at the evidence and came to the conclusion that I had been misdiagnosed and that I did in fact have Behçet’s disease.

In recent months I have asked pretty well all the liaison psychiatrists in the UK if they have encountered cases of Behçet’s disease passing through their out-patient clinics and none of them has replied that they had.

Professor Sir Simon Wessely for example told me that he was no Behçet’s specialist and that he would have to phone a colleague who was. Professor Wessely did not know if he had seen cases of Behçet’s pass through his clinic wrongly diagnosed as “CFS/ME”.

I recently e.mailed Professor Wessely to ask him about the outcome of his enquiries that were aided by one of his medical students but in spite of a rapid reply to my previous sequence of e.mails; Professor Sir Simon Wessely has not replied to my query regarding his findings.

I sincerely believe that I have homed in upon the Achilles heel of liaison psychiatry and their dominance of “medically unexplained” CFS/ME or indeed their latest diagnosis of Somatic Symptom Disorder.

It is my view from the evidence that liaison psychiatry; by providing doctors with the diagnostic option of CFS/ME and SSD have been responsible for the dumbing down of the clinical diagnostic process within our NHS and indeed around the world.

It is my view from the evidence that liaison psychiatry has made the potential for medical misdiagnosis acceptable practice within the medical profession as a whole.

Instead of considering rare sero-negative auto-immune disease explanations for cases of what end up as CFS/ME, a doctor now has an easy pathway to give a benign diagnosis of CFS/ME on the grounds that their set of negative test results together with a certain set of “invisible” symptoms means that the condition they are looking at is “medically unexplained” or an example of somatised symptom disorder.

Once medically misdiagnosed, the patient is disqualified from being in receipt of medications and therapies that would have been prescribed had that patient been correctly diagnosed in the first instance.

Disqualification of access to treatment will lead to that patient suffering considerably yet the doctors concerned will not recognise the severity of that patients suffering because that suffering will be put into the wrong context by that medical misdiagnosis.

I have known a case of Behçet’s disease where a patient was wrongly diagnosed as having “CFS/ME” for more than a decade and only had that misdiagnosis overturned when they suffered ocular micro-embolisms that caused permanent blindness in one eye and partial blindness in the other eye.

Away from Behçet’s we know of patients who suffered “diagnostic overshadowing” that lead to the late diagnosis of cancer and a rare heart condition.

The symptoms of cancer and the complex heart pathology were fatal in both situations and in both examples, the symptoms of neurological cancer and the heart pathology were almost certainly wrongly ascribed to the “invisible” symptoms of “CFS/ME”.

As far as the medical profession is concerned, a medical misdiagnosis or a medically missed diagnosis are considered as being “unfortunate”.

For the patient, a medical misdiagnosis or a medically missed diagnosis have profound and serious consequences and outcomes.

None of the doctors involved in making or perpetuating a medical misdiagnosis are subsequently held to account for what they have done to those patients.

In my own case, once I had been re-diagnosed I was treated as though I had simply failed back to the bottom of the pack.

There was no process of clinical education in that no investigation took place and no doctor involved was alerted to their poor clinical opinions that lead to me being medically misdiagnosed.

In short, it is my view that the clinical diagnostic process is in fact seriously flawed.

Patient’s are at risk from the medical profession at GP and specialist level.

In particular patients are at risk from an insufficient level of expertise used to make a complex diagnosis based on negative test results and a history of “invisible” physical symptoms.

Patients who present with a history of “invisible” symptoms and a set of negative routine test results are no longer referred to a super-specialist for the objective consideration of a set of relatively rare sero-negative medical diseases.

Instead, patients are given a benign diagnosis of “CFS/ME”; a diagnosis that by virtue of its own “somatisation” description – created by liaison psychiatry - is then incredibly hard or indeed impossible to overcome.

The present system seriously needs to be challenged and changed so that the patient has a fairer chance of being correctly diagnosed in the first instance and not medically misdiagnosed by inadequately qualified members of the medical profession.

The question is – how do we go about making a powerful effective challenge that effects such a change?

If we do nothing then nothing will change.

The medical profession have proven themselves happy to maintain the status quo.

As far as liaison psychiatry is concerned, it is imperative that the present system of a flawed diagnostic process stays exactly the same as it is today.

As far as immunology or rheumatology are concerned, they surely do not want their out-patient departments packed with patients who have discovered that they have been medically misdiagnosed.

A flawed diagnostic process fuels the creation of a base of “heterogeneous” patients who are subsequently involved in Cognitive Behavioural Therapy (CBT) or Graded Exercise Therapy (GET).

Those diagnosed as having “CFS/ME” are fodder for the exclusive “closed shop” self reinforcing research carried out by liaison psychiatry and no other parts of the medical profession.

One could argue that a totally unknown number of patients who are presently medically misdiagnosed with “CFS/ME” are in fact adding credence to the views of liaison psychiatry because a misdiagnosed patient will have a set of self perpetuating and untreated disabling symptoms (fueled by an unrecognised disease process) that the patient is unable to “cast off” or rid themselves of from a course of CBT or GET.

Those patients will reliably keep on reporting “somatised” “invisible” symptoms not because they have any mental impairment but because an auto-immune disease is producing those symptoms.

Such an unknown number of medically misdiagnosed patients can be accused by liaison psychiatry of being so neurotic or so somatised that they are unable to be “cured” by CBT.

Such misdiagnosed patients will be readily available year upon year for future “peer reviewed” research studies that go to reinforcing the validity of Somatised Symptom Disorder or “CFS/ME” using medically misdiagnosed patients to helpfully legitimise those artificial mental health labels.

Such misdiagnosed patients become – in the eyes of liaison psychiatry – desperately in need of even more psychiatric interventions and their sincere professional “help”.

Such patients become so firmly shunted into the somatisation cul-de-sac that they may never have their real diagnosis established unless they suffer a loss of sight or a pulmonary embolism or another “visible” crisis event such as a brain tumour or a fatal heart condition.

However, a pyramid can be reduced to rubble if the foundations are seen and recognised to be rotten.

Once it is realised that the pyramid is built on rotten foundations then when those foundations are condemned and removed, that pyramid will be reduced to rubble.

Sincerely,

Stephen Ralph DCR(D) Retired (diagnostic radiography)

See also…

http://www.meactionuk.org.uk/systemic-vasculitis-and-myalgic-encephalomyelitis.htm

Mucus !

And here I write about a "YUCK!" topic - be warned.

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I promise to make it short not with no intention to revisit it any time soon.


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So here we go, you have been warned.

Rituximab for Behçet's

While I think that (pasterized) milk, dairy and eggs are causing Behçet's, it is interesting to see that Rituximab seems to be helping Behçet's patients.

Rituximab in intractable ocular lesions of Behcet's disease; randomized single-blind control study (pilot study).

Davatchi F, Shams H, Rezaipoor M, Sadeghi-Abdollahi B, Shahram F, Nadji A, Chams-Davatchi C, Akhlaghi M, Faezi T, Naderi N.
Source

Behcet's Unit, Rheumatology Research Center, Tehran University of Medical Sciences, Tehran, Iran.

BACKGROUND:
Ocular lesions, the main morbidity of Behcet's disease (BD), are the most difficult to treat. The aim of this study was to evaluate the efficacy of rituximab.

METHODS:
Inclusion criteria were retinal vasculitis and edema, resistant to cytotoxic drugs. Twenty patients were randomized to a rituximab group (RG) or cytotoxic combination therapy group (CCTG). Rituximab was given in two 1000-mg courses (15-day interval). Subjects received methotrexate (15 mg/weekly) with prednisolone (0.5 mg/kg per day). The CCTG received pulse cyclophosphamide (1000 mg/monthly), azathioprine (2-3 mg/kg per day) and prednisolone (0.5 mg/kg per day). The primary endpoint was the overall state of patients' eyes and the Total Adjusted Disease Activity Index (TADAI). Secondary endpoints were: visual acuity (VA), posterior uveitis (PU), and retinal vasculitis (RV). The baseline data were compared at 6 months by paired sample t-test and analysis of variance.

RESULTS:
TADAI improved significantly in the RG (t = 3.340, P = 0.009), but not in the CCTG (t = 2.241, P = 0.052). For secondary endpoints (RG/CCTG), the mean VA improved in two patients versus three (2/3), remained unchanged in 1/1, and worsened in 7/6 patients. The mean PU improved significantly in the RG (t = 3.943, P = 0.001), not in the CCTG (t = 2.371, P = 0.028). RV improved, but not statistically (t = 2.027, P = 0.057 vs. t = 1.045, P = 0.31). Edema of retina, disc and macula improved significantly in both, but much better for the RG (t = 2.781, P = 0.012 vs. t = 2.707, P = 0.014).

CONCLUSION:
Rituximab was efficient in severe ocular manifestations of BD, TADAI improved significantly after 6 months with rituximab, but not with CCT.

And one more study:

Treatment of retinal vasculitis in Behçet's disease with rituximab.

Sadreddini S, Noshad H, Molaeefard M, Noshad R.

Tabriz University of Medical Sciences, Golgasht St., Tabriz, Iran.

Abstract

Behçet's disease (BD) is more common in eastern than western countries. Physicians have frequently encountered problems in its treatment, especially eye involvement. Recurrent oral and genital aphthous ulcerations are the hallmarks of Behçet's disease but other organs can be involved and ocular disease is one of the most disabling manifestations. Up to now, there are some problems in treatment of the retinal vasculitis due to Behçet's disease. We reported one patient, with visual loss due to retinal vasculitis that was resistant to prednisolone and azathioprine. Our patient was treated successfully with rituximab and his remission was sustained for 24 months of follow-up. Rituximab is a chimeric monoclonal antibody that acts against the specific B cell antigen, CD20. The recent success of rituximab in autoimmune diseases, which is considered to be T cell-mediated, indicates that B cells must have a much broader role in the pathogenesis of autoimmune diseases than generally appreciated.

Behçet's is a rare disease, so very few studies are being done.

However, if you have disease that might be helped by Rituximab, my (slightly educated) guess is to try consume no milk, no dairy and no eggs for at least 4 weeks to see if it helps – it's worth a shot.

A putative role for cow's milk in the pathogenesis of Behçet's

Humoral and cell mediated immune response to cow's milk proteins in Behçet's disease.
Ann Rheum Dis. 2002 May;61(5):459-62.

Triolo G, Accardo-Palumbo A, Dieli F, Ciccia F, Ferrante A, Giardina E, Licata G.
Source

Dipartimento Biomedico di Medicina Interna e Specialistica (Section of Rheumatology and Clinical Immunology), Policlinico Universitario, Palermo, Italy

Abstract
OBJECTIVE:
To investigate the humoral and cellular immune response against cow's milk proteins in Behçet's disease and to distinguish any behaviour during active or inactive disease.

METHODS:
Peripheral blood mononuclear cells from 16 patients and from eight normal controls were cultured in the presence of phytohaemagglutinin (PHA), beta-casein, beta-lactoglobulin, or chicken egg albumin. Interferon gamma (IFNgamma) and interleukin 4 (IL4) were measured in the culture supernatants by enzyme linked immunosorbent assay (ELISA). Serum samples from 46 patients with Behçet's disease and from 37 healthy subjects were also studied for antibody detection. Antibodies to beta-casein, beta-lactoglobulin, and chicken egg albumin were determined by ELISA.

RESULTS:
High IFNgamma but not IL4 levels were found in the supernatants of lymphocytes from patients with active disease cultured in the presence of cow's milk proteins. Levels were comparable with those obtained in cultures stimulated with PHA. A significantly higher level of anti-beta-casein and anti-beta-lactoglobulin IgG and IgA antibodies was found in patients with active Behçet's disease. No relation was found between their occurrence and the age of the patients, the duration of disease, or the presence of gastrointestinal abnormalities. Antibodies to chicken albumin were detected at low levels and with a prevalence similar to that of healthy subjects.

CONCLUSION:
The results indicate that an active immune response occurs in Behçet's disease. This response involves an increased frequency of antibodies to cow's milk protein and a strong Th1 polarisation after exposure to these antigens. The occurrence of these abnormalities supports a putative role for cow's milk proteins immune response in the pathogenesis of Behçet's disease.

This research is motherfucking 10 years old.

You gotta be kidding me.

Let me repeat:
This research is motherfucking 10 years old.

MOTHERFUCKING.

TEN. 

YEARS.

Words fail me.

PS: And may I suggest that you stop eating eggs, in case you have Crohn's disease? Figure 1 in the PDF strongly hints at that…

On Nutrition: Food To Avoid

(Just a very quickly written heretic list.)

This deserves a longer post, with reasons for every point – alas, it is not meant to be at the moment. The list is heavily influenced by the Paleo Diet (avoid evolutionary novel foods) and my personal experience (avoid foods that lead to acne flares, gastrointestinal problems, excessive hunger and other ill health).

So here we go.

Food that most likely will not kill you immediately, but quite likely in the long run

1. Trans-Fatty Acids
   (AKA "partially hydrogenated seed oil", AKA margarine, AKA shortening)
   Stay away from it. Seriously, this shit is dangerous in the long run.
2. Seed Oil
   (AKA vegetable oil, especially sunflower oil)
   Small amounts every now and then will not kill you. But the high Omega-6 content will kill you in the long run, if you consume much seed oils. Some seed oils are at the "less dangerous" end of the scale – especially olive oil. Nevertheless, eat in small amounts, if at all.
3. Dairy
   (AKA cow milk, AKA milk products, especially from pasteurized milk)
   My advise: Stay away from milk and milk products (e.g. desert, milk-chocolate) – it will be better for your health.
4. Cereal Grains and other seeds
   (AKA wheat, soy, corn)
   It will be better to avoid grains and other seeds, trust me. Bread causes me to get very very hungry after a couple of hours, for some hours.
5. Eggs
   Eat in moderation, if at all. If you have health problems that don't quite go away on a paleo diet, stop the consumption of eggs and see if it helps.
6. Industrially Produced Meat Products
   Especially sausages. Seriously, they put all kind of crap in there. If you have a local butcher (that you think you can trust) then buy sausages there.
7. Honey
   It is not natural to consume honey every day. Cavemen did had little access to honey.
8. Legumes
   (AKA Beans, AKA Pulse, AKA Peas, AKA Lentil)
   Might be OK if traditionally prepared. I avoid it, as it causes gastrointestinal problems for me.
9. Supplements
   Avoid, unless you have a medical condition where you know that you need them.
10. FODMAPs
    Causes gastrointestinal/IBS problems for some people – haven't check it myself.
11. (Coconut Milk)
    Causes gastrointestinal problems for me, so I don't eat it.

And of course, many of these foodstuffs hide in "Crap In A Box" foods – better not to eat crap, I reckon.

And don't consume additional vitamins (unless you have known vitamin deficiency, or have other health problems you know where vitamins are beneficial).

Foods in health limbo (if I knew!)

1. Rice
   Honestly, if I knew. I try to eat it in moderation – once a week, at most.
2. Potatoes
   (AKA "White Potatoes")
   From the family of nightshades.
   If you have health problems that don't go away with a nutritional intervention, stop the consumption of nightshades (including tomatoes) and see if it helps.
3. Other Nightshades
   If I knew. 
4. Nut, Seeds
   I avoid them at the moment.
5. Shellfish
   I avoid shellfish at the moment.
6. Raw Milk and Dairy made out of it
   I avoid it at the moment. But it is better than milk products from pasteurized milk. I avoid all dairy at the moment, regardless of raw or not.
7. Cured Meat
   If I knew. I try to eat it in moderation
8. Beef
   I avoid beef at the moment, as dairy causes definitely for me inflammatory and/or auto-immune problems – so I am suspicious of all cow products (except clarified butter) and cautiously removed beef from my diet. My fears regarding beef might be unwarranted though, and I will try to reintroduce beef in the future.
9. Tea
   Seriously, if you drink lots of tea, this might be problem. Cavemen did not drink lots of tea. I avoid it.
10. Coffee
    I need my coffee. Might be better to limit the consumption or even avoid coffee.
11. Sugar
    Eat in moderation, at most. It might be better to avoid sugar – but I think the bad reputation that sugar receives lately is only partially based in reality.

Foods that should be OK

(Unless you know that they cause health problems for you, e.g. if you have an known allergy)

1. Fish
2. Meat
   Freshly prepared, regardless of origin (beef, pork, chicken, turkey, lamb, and so on)
3. Animal Fat, Saturated Fat
   (I'm a heretic after all)
4. Tubers, Roots, Carrots and such
5. Most Vegetables
   (AKA Greens)
6. Most Fruits
7. Salt

And ignore macro nutrient ratios, and ignore all talk about low-carb (LC) or very-low-carb (VLC) for now.

Turned out to be quite a long heretic list, after all. Has to be enough for now.

Aphthous Ulcers linked to Presence of Antibodies against Cow Milk

Humoral immunity to cow’s milk proteins and gliadin within the etiology of recurrent aphthous ulcers?

Objectives: The goal of this study was to determine the incidence of serum antibodies to gliadin and to cow’s milk proteins (CMP) using ELISA test, within patients who have recurrent aphthous ulcers (RAU).

Subjects and Methods: Fifty patients with recurrent aphthous ulcers and fifty healthy people were included in this research.

Levels of serum IgA and IgG antibodies to gliadin and IgA, IgG and IgE to CMP were determined using ELISA.

Results: The levels of serum antigliadin IgA and IgG antibodies were not significantly higher in patients with RAU in comparison with the controls (P = 0.937 and P = 0.1854 respectively).

The levels of serum anti-CMP IgA, IgG and IgE antibodies were significantly higher in patients with RAU in comparison with the controls (P < 0.005, P < 0.002 and P < 0.001 respectively).

In general, the increased humoral (IgA or IgG) immunoreactivity to CMP was found in 32 of 50 patients, while 17 of them showed the increased levels of both IgA and IgG immunoreactivity to CMP.

At the same time, 16 out of 50 patients had IgA, IgG and IgE immunoreactivity to CMP.

Conclusion: These results indicate the strong association between high levels of serum anti-CMP IgA, IgG and IgE antibodies and clinical manifestations of recurrent aphthous ulcers.

(PDF)

When will acne be linked to (pasteurized) cow milk?

Behçet's Disease can look like CFS

Info Video by the American Behçet's Disease Association

It all sounds so familiar. Crippling chronic fatigue, friends saying "you are faking", doctors don't now what's wrong. So people are relieved and almost happy when they finally – after years in most cases – get a proper diagnose that explains their symptoms.

Differential between Behçet's and ME/CFS is needed

Some of the symptoms of Behçet’s:

• Unpredictability: impossible to predict onset or clearing-up of symptoms, onset of symptoms sudden, difficulties in keeping to arrangements, appointments, working, affairs, managing household, family, social activities, hobbies
• Arthritis: reduced mobility or complete immobility, pain.
• Oral ulcers: pain,diet restricted to soft or liquid food, inability to eat at all, inability to talk, dribbling, dehydration, malnutrition.
• Genital ulcers: immobility, sex-life affected, embarrassment, suspicion, urinary retention, pain.
• Visual level: fear of onset of blindness, handicapping according to level of impairment and ability to adapt, pain.
• Skin: disfiguring and embarrassing skin lesions, easy bruising, poor slow healing, pain.
• Gastro-intestinal: wind, diarrhoea (with blood and mucus) or constipation, severe abdominal pain. Mimics inflammatory bowel diseases, irritable bowel syndrome. Stomach ulcers, ulcers in gullet. Risk of perforated ulcer. Dehydration, malnutrition
• Thrombophlebitis: immobility, pain.
• Thrombosis: immobility, pain. Risk of embolism.
• Ears: hearing loss, tinnitus, vertigo
• Chest: wheezing, breathlessness, haemorrhages, haemoptysis, pleurisy, pain.
• Cardio-vascular: breathlessness, haemorrhages, dysrhythmias, pericarditis, valve problems, pain. Risk of ruptured aneurysms.
• Neurological: paralysis, strokes (CVAs), transient ischemic attacks (TIAs), memory & concentration impairment, seizures, migraine-type or meningitis-type headaches, double vision, incontinence, impotence, strange sensations, motor impairment ranging from mild clumsiness to vegetative states, personality changes, psychoses.
• Fatigue: profound persistent exhaustion affecting all activity.
• Feverishness: effects like having ‘flu, night sweats, bizarre sense of feeling cold or warm.

(Remember no patient has all symptoms! See below for the diagnostic criteria for Behçet’s.)

I marked those who I think are the most prominent overlap with ME/CFS. One can see that there is some kind of overlap (not including some of the neurological and gastro-intestinal symptoms that doubtlessly some of the ME/CFS patients have as well)

If some of primary symptoms of Behçet’s (oral ulcers, eye inflammation) are not pronounced (or in rare cases even oral ulcers can be absent), then it is easy to misdiagnose Behçet’s as ME/CFS.

Again, this shows how utterly important a proper differential diagnosis is in cases of suspected ME/CFS. There are many known diseases out there that can look to the untrained eye like another case of ME/CFS.

Of course there are newer and older diagnostic criteria. These are the newer (and probably better) 2006 ICBD criteria:

Add points for every symptom:

• Oral aphthosis ("mouth ulcers"): 1 point
• Skin lesions (e.g. acne): 1 point
• Vascular lesions: 1 point
• Positive pathergy test: 1 point
• Genital aphthosis ("genital ulcers"): 2 points
• Eye lesions: 2 point

3 points or more? It is most likely Behçet's.

And what are the older diagnostic guidelines for Behçet's?

1. International Study Group strict research level guidelines for diagnosis

Must have:

• mouth ulcers (any shape,size or number at least 3 times in any 12 months)

Along with 2 out of the next 4 ‘hallmark’ symptoms:

• genital ulcers (including anal ulcers and spots in the genital region and swollen testicles or epididymitis in men)
• skin lesions (papulo-pustules, folliculitis, erythema nodosum, acne in post-adolescents not on corticosteroids)
• eye inflammation (iritis, uveitis, retinal vasculitis, cells in the vitreous)
• pathergy reaction (papule >2 mm diameter, 24-48 hrs or more after needle-prick)

2. Practical clinical guidelines for patients not included in research cohorts

Must have:

• mouth ulcers

Along with 1 out of the 4 ‘hallmark’ symptoms above

Along with 2 of the following symptoms:

• arthritis/arthralgia
• nervous system symptoms
• stomach and/or bowel inflammation
• deep vein thrombosis
• superficial thrombophlebitis
• cardiovascular problems
• inflammatory problems in chest and lungs
• problems with hearing and/or balance
• extreme exhaustion
• changes of personality, psychoses
• any other member of the family with a diagnosis of Behçet’s disease

3. 'Suspected' or 'possible' diagnosis

Usually given when someone does not have mouth ulcers or has mouth ulcers but does not have 1 of the 4 'hallmark' symptoms but has other symptoms and signs of inflammation and other causes for these have been ruled out.

Care must be taken for a differential between ME/CFS and Behçet's. As with all diagnostic criteria:

• someone who meets some set of diagnostic criteria for a disease, does not necessarily have the disease – and could have another disease instead
• and someone who barely meets the criteria may actually have the disease (see "suspected diagnosis" above)

regardless of whether it is Behçet's, ME/CFS or any other disease.

Psychiatric conditions in Behçet’s

Psychiatric conditions in Behçet’s

Psychiatric conditions occur only very rarely in Behçet’s syndrome, when parts of the brain which look after emotion and thought are affected by the meningoencephalitis noted above. Occasionally patients may present with hallucinations, and abnormal thoughts such as paranoia, and difficulty thinking and remembering. This is most uncommon and normally settles down well with the correct treatment.

Separate to this is the syndrome of fatigue, anxiety and depression which can also cause thinking and memory problems, but which is not related to a problem within the brain. This, in contrast, is very much more common, not just in Behçet’s syndrome but in most chronic and difficult conditions. This is not surprising, but some Doctors, even GPs, fail to recognise this and I have found that this is frustrating to patients. It has been shown that patients with Behçet’s syndrome show higher ratings on depression and anxiety scores, and that these scores vary with the severity of the underlying illness. So-called fibromyalgia symptoms (aches and pains with tiredness) also correlate with how the Behçet’s is behaving, but it is also true that the symptoms of anxiety and depression can make the Behçet’s feel worse when it is not actually in relapse. So it is a very complicated problem. Fatigue management and a positive outlook to the disease are best. Avoidance of overtiredness and planning of the day, to allow rest before and after an activity, work well, and most find that fatigue improves and memory becomes more efficient. It’s easy for Doctors to prescribe and hard for the patients to do!

Could it be Behçet’s?

Interesting question: Do I have Behçet’s?

With my old diet I had all these following symptoms, (almost) enough to meet the diagnostic criteria for Behçet’s:

• Minor aphthous ulceration [every couple of months in the mouth]
• Pseudofolliculitis [maybe a very very slight, but my follicles were always red]
• Papulopustular lesions [sometimes some]
• Acneiform nodules [not sure, I thought it was acne]
• Extreme exhaustion [Wouldn't call it "extreme", but yes I am quite fatigued]
• Nervous system symptoms [do muscle twitches and migraines count?]

(I am not sure if I might have had a very slight iritis, an inflammation of the iris. My eyecolor changed from green-brown – with brown "patches" – to a more uniform green with slight brown. And the blood veins in the white of my eye got less visible.)

These are the symptoms I had on my old diet, some of which I still have. And some of the symptoms return when I leave the path of the Paleo Diet and venture into my old diet (mainly when I eat pasteurized milk products or when I eat eggs).

And every symptom counts. I really paid not much attention to the aphthous ulcers in my mouth. They came and went again, I could live with them and they were the least of my problems – and why concern myself or even a doctor with such a small thing?

I fear I need go again on my old diet to provoke these symptoms. But not at the moment.

At the moment I am too tired to write more – but is interesting the things one finds.

Stephen Ralph on Behçet’s, ME/CFS and Misdiagnosis by Psychologists (2)

See part 1 here.

Permission to Repost

Hello there,

In the background during my absence from campaigning, I have been plugging away at trying to get individuals of influence aware of the associations between the invisible symptom set of ME and the invisible symptom set of Behçet’s syndrome.

I was recently told by one doctor dealing with “CFS” that he could only find 11 research papers on Behçet’s syndrome and that one of those was in German.

This doctor then proceeded to give me all the classic stereotypical presentations of Behçet’s syndrome including patients having clusters of mouth ulcers, genital ulcers, eye involvement in the form of uveitis.

And together with this I discussed the fact that the HLA B51 blood test that can show positive for a case of Behçet’s is more often than not negative for a patient who has Behçet’s.

I then pointed out the following which will become crucially important in the coming months.

If you take a look at this link.... http://bit.ly/V5tLAe you will see the various levels of symptom certainty needed to make a diagnosis of Behçet's Syndrome.

The certainty level exists for the purposes of clinical research which means that anyone who participates in clinical research will have the top level of certainty diagnosis and many of the easily visible and detectable signs of Behçet’s disease.

However, you will also see on that web page that it is still viable to have Behçet’s disease without all the obvious classic signs.

Even if you do not have those classic signs, you can still be diagnosed as having Behçet’s syndrome.

The fact is that nobody appears to have carried out any research into the other end of the scale…. The end of the scale where patients who can have Behçet’s have hardly any or indeed no visible signs that would be observable by a specialist at an out-patient appointment.

…

Stephen Ralph on Behçet’s, ME/CFS and Misdiagnosis by Psychologists (1)

See part 2 here.

Permission to Repost

Dear Reader,

As some of you reading this will know, I was dragged into the world of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome way back in 1996/1997. At around this time I jointly set up MEActionUK and the companion website www.meactionuk.org.uk

At that time I had been a practicing diagnostic Radiographer at a busy district general hospital in Dorset.

During the three years of my training and subsequently over the period of practice I extensively covered human anatomy, physiology, pathology, patient care and hospital practice as well as radiographic photography, equipment and radiation physics.

Some of our lectures mirrored those of medical students.

We were familiar with “Gray’s Anatomy” for the sort of detail we needed to cover.

Although optional, I attended an autopsy during my training to enable me to appreciate the internal anatomy that we had been studying for many months.

I also observed open heart valve replacement surgery – the anaesthetist let me stand where he usually stood so I could see what was where and how the surgery proceeded.

Our education and my subsequent career was comprehensive until I was forced to retire due to ill health.

Over the 10 years of my education and career in diagnostic radiography, it was drummed into me that there was an overriding importance within my profession to provide the best quality radiography possible to enable the doctor to form the correct diagnosis with thanks to the information presented to the radiologist (a doctor specialising in reading x-ray’s and performing x-ray examinations) or indeed any generic doctor or even medical students examining our work in a busy A&E.

If our work wasn’t to the highest of standards then we understood that there was a sliding scale of risk that a radiologist or non-specialist doctor could draw the wrong conclusions – missing a pathology from poor radiographic technique and then forming the wrong diagnostic opinions about what they were looking at.

…

Skin, Nails, Tongue – Health Surrogate Markers

So I noticed today that the appearance of my tongue has improved. My tongue used to be covered with some (very slight) white patches, and it looked a bit like it would rot away and fall apart in some time – gross, I know, so I did look to often at my tongue… :-) But now my tongue looks pale red and uniformly so, with a little bit more white in the back.

Hmm, it is only a optical improvement, yet I take that as a positive health thing.

Again, I blame it on my paleo diet.

While we are at the topic of "skin" in the mouth, what has gone for good are aphthous ulcers / canker sores in the mouth (which I had from time to time).

And this in addition that my skin no longer suffers acne. From the various skin improvements, acne is the only one I have clearly linked to (pasteurized) milk and dairy as a cause.

And two years ago I noticed for the first time something my skin doctor called "hemangiomas" (might as well be "vascular lesions"), very small, about 1 to 2 mm, give or take (about 1/20 to 1/10 of an inch), red dots on the skin, from blood vessels. She said they would get slowly worse over the years, but they improved a tad bit over the last two years – but it is too early to call.

And the skin around the "front corners" of fingernails used to peel off easily, so the top layers of skin around my finger nails had a tendency to be missing in action – and that has improved much as well with a paleo diet.

And while we are at nails, the appearance of my nails has improved a little bit over the last two years – almost no more "mountain ridges" across from side to side (beau's lines?) – but the grooves on the length of the nail plates (in growth direction) are still here, but maybe a tad bit weaker. And the problems with hangnails have improved much as well. Cuticles and white spots are no longer noticable, but were not a huge problem in the first place.

Then, I had about once or twice a year an armpit rush, which seems to have gone by eliminating dairy and eggs from my nutrition.

So related to only skin there are more than half a dozen surrogate health markers for me, some moving slowly (e.g. hemangiomas), some moving fast (mainly acne), some were seldom (e.g. canker sores), some a constant bane (again mainly acne).

While I traced down only one skin problem clearly to an identified cause (with acne and dairy), I suspect that the other skin problems might have been caused by dairy too (maybe with cereal grains being a problem in one or the other instead of dairy, or maybe in addition to dairy).

So if you have health problems and want to start a paleo diet, you should make an inventory of your little health problems, and then you can see if they improve – things like improvement in areas such as mood are important to notice too, but acne and canker sores are so much more objective. Then you can do a challenge with dairy, or with cereal grains, or whatever you removed from your diet, to see if the things get worse again.