10-30-2019 Cause of Death in CIRS

As the science has expanded in CIRS, we have looked at a series of questions regarding adverse effects of innate immune activation and differential gene activation seen in CIRS patients. Sample questions include: Is there an increased risk of cancer in CIRS? With all the literature that purports to show cancer being caused by mycotoxins, we might think that a major rise in cancer would be found. Curiously, it is not. There is no difference in lung cancer in smokers, colon cancer and breast cancer in women over 25 in CIRS cases compared to national data bases (unpublished chart review). Our problem with trying to show differences in cancer incidence is limited by the short duration (i.e., <3 years, usually) of follow up for a disease process that can take 50 years to develop. A fundamental question underlying the cancer issue is what really causes cancer.

As far as atherosclerosis goes, with concern about diabetes, blood pressure and high cholesterol being national foci, do we see an increased risk of acute coronary syndromes? No. Acute carotid dissection? No. Abdominal aortic aneurysm? No. Peripheral vascular disease? No. It may well be that the inflammation underlying atherosclerosis becomes identified as a TH17/T-reg imbalance.

Do we see more death from violence? Homicides, gun violence and automobile accidents with road rage and the like all are common causes of death. No, we have no data to suggest that increased violent behavior is more common in CIRS even when we try to focus in on small amygdala areas suggested by some of the literature to be important in violent or sociopathic behavior.

Do we see more cirrhosis of the liver in CIRS patients? Here the answer is actually no. It may well be that treatment of elevated TGF beta-1 is preventing fibrosis which in turn is the key element that gets people into trouble with alcohol-related cirrhosis. Again, we are looking at a disease process that takes 50 years to develop which renders it impossible to say that 3 years of follow-up is adequate to show prevention.

Where we do see increased risk of morbidity and possibly mortality is from right ventricular failure due to pulmonary hypertension. It is difficult in end-stage right heart failure to sort out fibrotic sources of pulmonary hypertension from non-fibrotic and certainly difficult to sort out embolic sources of pulmonary hypertension from non-embolic. But in those patients who we don’t find fibrosis (possibly due to blockade of TGF beta-1 causing epithelial to mesenchymal transformation) we see an increase in CIRS. The numbers are too small to show statistical significance. If we can find a pure source of non-fibrotic and non-embolic pulmonary hypertension, the illnesses responded beautifully to treatment with VIP. It is a real-life saver!

Of much greater concern in cause of death in CIRS patients is suicide. These days, the patients that I talk to who are at high risk for suicidal behavior are just not talking about it, as in another unpublished chart review of CIRS patients. We found that 95% of patients before treatment who were asked about suicide had thought of suicide as an option. Only a small portion of CIRS cases were asked.

Anxiety is quite common in CIRS patients. Whether this is due to a smaller size caudate in this illness or not is subject to speculation, but clearly anxiety has risen to the top of my charts of concern, especially in adolescents. When a person has PANS and CIRS and has psychotic behavior, suicide prevention must be part of the medical treatment plan.

The best treatment for suicide ideation in CIRS patients is to be supportive and forthcoming at the same time steadfast in reduction of inflammatory sources of brain injury. The family needs to be brought in as a support network, as in any other illness, with openness and communication being a hallmark of effective caring for the CIRS patients.

It is my opinion that a dialogue between experts in CIRS and psychiatry, social work, life coaching and primary care physicians caring for CIRS patients could make for benefit in prevention of suicide. When suicide occurs, it is too late.

That thought is sobering and humbling at the same time for all of us dedicated to the treatment of all aspect of CIRS.