Author Topic: POIS and a Mystery Illness  (Read 6137 times)


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POIS and a Mystery Illness
« on: April 14, 2014, 04:28:29 PM »
Hi there,

I'm not sure whether anybody here will be able to help with this as it's not strictly POIS, but there are certainly cross-over elements. I will also apologise now as I anticipate this being very long..

Just over 6 years ago I came down with a mystery illness. So far no doctors had been able to get anywhere with a diagnosis, but something that I've had on and off throughout are the symptoms of POIS. I'm going to put a fairly extensive history of my illness and if anyone had any ideas or could contribute anything it would be hugely appreciated.

The illness began in November and completely out of the blue. I woke up feeling totally normal and then at just after midday I started to feel very weak and fatigued. This continued for about 30 minutes at which point I wondered if it was being caused by low blood sugar or lack of energy from having not eaten for a while, so I promptly tried eating food (even though I had zero appetite) and it made me much, much worse. I started to feel sick, shaking, sweating and heart thumping and also apparently became very pale ? as was told by a friend. This continued throughout the afternoon until 5pm when I started to feel much better. In fact so much so that I believed I was over whatever it was and ate a full meal and went to bed assuming I?d be fine the next day. However, after waking and feeling ok during the morning, again at 12pm the exact same thing happened ? fatigued throughout the afternoon. Come 5pm, I improved and felt much better during the evening. Every single day for the last 5 and a half years this exact same pattern has happened ? 12pm become extremely fatigued and ill feeling, 5pm I improve and feel better. Unfortunately, this was only the beginning.

After this continued for about 10 days I went to a doctor who performed some routine blood tests that whilst didn?t show any specific illness, did show an increase in ESR, CRP, white cell count (neutrophils) and platelets.

These levels continued to rise throughout December, January and February, but then in April had begun to come down. By August they were all completely normal, and although I felt a little bit better, the illness remained.

Not only does the illness follow a daily pattern that I mentioned above, 12pm worse until 5pm, but there is a bizarre but obvious 6 monthly pattern ? my blood tests are all increased during the winter months (October to March) and then from April they begin to improve until August when everything is normal again, and then come October they all start to rise again and the pattern repeats itself. This has happened every single year for 5 years now without fail. During the winter I feel worse too, as reflected by the blood tests, but come the summer when they all become normal I only feel a mild improvement in myself.

Recently, instead of my CRP, ESR, platelets, neutrophils etc. being raised as I said above, they all became normal during the winter and instead my ALT (alanine aminotransferase) became very high (313 and top of the range is 50), stayed this way throughout winter and has since become normal again as I?ve come into the summer months. I had my liver scanned and a hepatitis screen to check for liver problems but all was fine. I?ve since looked ALT up and found that it can be caused by inflammation to the liver, and the increased ESR, CRP, platelets etc. points to inflammation too, although only during the winter months for some reason.

Other symptoms I have:

Strongly beating heart ? At first this was only present between midday and 5pm, but it has now become constant at all times. Whether I?m lying, sitting or standing my heart beats far too strongly all the time and I feel a constant pounding in my chest. Not necessarily too fast, just thumping away in my chest. When I stand my pulse rate increases too. This was shown as postural tachycardia by a tilt table test (POTS, although the neurologists accepted that there was another underling condition probably causing the POTS).

Hair loss ? from body and head. Hair on my head is very thin now, and is still constantly falling out. Also lost hair from my thigh calf.

Constantly low temperature - low on waking (average about 36.0 C/ 96.8 F) and rises slightly throughout the day peaking at about 9pm at 36.4 C/ 97.5 F). Also if I stand, walk about or do any exercise my temperature drops.

Fatigue ? the fatigue doesn?t make me feel sleepy, just weak and ill. It?s hard to describe exactly, but since this all started I haven?t felt right once.

Loss of appetite ? Since becoming ill I haven?t felt hungry at all. It?s like my sense of hunger has been switched off.

Digestion ? bloating, gas and wind. Along with a loss of appetite I seem to have lost feeling in my stomach, as if it is not sending me messages of when I?m hungry. I could go hours and hours and never feel hungry.

Weight ? Has always been very low, and no matter how much I eat I can?t get over 9 stone/125lbs. I'm 5ft 10" and 26 years old.

Skin ? I have severe seborrheic dermatitis on my face, scalp and torso.

Nervous system ? It feels like my entire nervous system is very oversensitive, but not in the normal way people talk about. When I look at a TV, computer or phone screen I get what feels like an adrenaline release. I will sweat, shake, my heart rate increases and I have to open my bowels. This happens almost instantly. I don?t find the computer or TV a strain on my eyes or struggle with the glare. In fact the only problem I have is this ridiculous body reaction. I also get the same reaction of an what feels like an adrenaline release when I need to open my bowels ? instead of the normal message everyone gets that tells them they have to go to the toilet my body instead does the shaking, sweating and heart rate increase which will persist until I open my bowels and it then stops almost instantly.

Also to do with my digestion is that when I drink fluid my body often reacts by shaking and sweating. My digestion is so poor that I cannot drink during the day as it fills me up and would not allow me to eat anymore food, and with such a low weight I am concerned about it dropping even further. So I finish my evening meal and then have fluid. However when I do drink my body reacts by making me sweat and shake ? again what feels like adrenaline. This happens with cold drinks, so is not to do with the warmth from hot drinks. This coupled with my extremely poor digestion has meant that I find it very difficult to consume the required amount of fluid per day, and sweating and shaking every time you consume fluid is incredibly debilitating. I realise these could all sound psychological but can assure you they are definitely not. They are physical reactions that I have absolutely no control over.

Other problems with the nervous system are that any minor stress or tension results in a massive over reacting. I find it difficult to watch something like a sporting event or a tense thriller as even the slightly tension causes my body to over react and I will again sweat, shake, and have the heart rate increase.
It?s really difficult to describe all these problems accurately as most people seem to always get the wrong end of the stick, like I can?t look at a TV screen because it?s too bright and my eyes are sensitive to the light, but that?s not the case at all. All that happens is my body sweats, shakes, heart rate increases etc.

And just generally, whatever I do - the most minimal exercise, as I said any type of stress, be that emotional, physical, psychological, everyday things such as looking at screens.. it all seems to produce what feels to me like adrenaline. All the symptoms I get from these mundane actions cause faster, thumping heart, sweating, shaking, anxiety and just feeling truly awful.

Reaction after stress ? If something does cause me to be stressed or nervous, as mentioned above, then the next day or a couple of days later I feel much worse. More fatigued, digestion worse, more sensitive nervous system. Also my temperature can increase and has on a few occasions after a big stress caused me to have a raised above normal temp or even fever. It seems that after something stressful then whatever the inflammation is that?s lurking in my body and causing my increased blood tests is able to have more of an affect, thus causing the problems I mentioned above.

The sun ? I am unable to go in the sun as if I do my body also reacts by causing me to feel much worse the next day and then thereafter and also causes me to have an increased temperature or fevers. This to me seems like my body is viewing sunlight as a stress to it (merely guesswork though). I've only been able to go in the sun 3 or 4 times over the last 5 years and each time I've felt much worse after and had quite severe fevers a few days later too.

Sweating ? whilst so many things cause me to sweat, I only do so from my back, armpits and legs. My face, head, neck, chest, stomach, arms and hands do not sweat at all, ever.

Sleep ? I cannot get to sleep unless I eat something. I am wide awake and then I eat something small and I fall asleep within a few minutes. I often wake during the night and have to eat something small to get back to sleep again.

Racing thoughts ? my brain seems to be over stimulated all of the time. I also often get racing thoughts when I eat.

Reflexes ? very quick reflexes.

Greasy hair ? within hours of washing it my hair becomes very greasy.

One last thing I have not mentioned is that along with following the seasonal-like pattern of improving blood tests during the summer months, some symptoms I have improve during these summer months and then can go altogether, but as the blood tests begin to rise again around October new symptoms will then emerge. So symptoms can come and go following this pattern every year and large parts of illness seems to be continually changing.

I DO NOT suffer from:
Brain fog or memory problems ? my mind feels as sharp as it has ever done.
Dizziness/light headedness/fainting
Chest pains.
Visual disturbances.
Pain ? I have no joint or muscle pain whatsoever.
Immune system ? been ill with regular viruses, none more so than usual though, and the immune system hasn?t struggled.
Depression ? haven?t been depressed at all, just frustrated.

Doctors have performed quite a few tests on me:

TSH ? in first few weeks of illness it was 2.2, now 6 years later it is 1.4.
T3 ? 4.8 PMOL/L ? normal.
T4 ? 19.4 PMOL/L ? normal.
Parathyroid ? 2.8 PMOL/L ? normal.
Cortisol ? 901 NMOL/L ? high (although am always stressed as I can't control it)

Echo cardiogram, ECG and 24 hour heart rate monitor ? normal but cardiologist noted my strongly beating heart and an erratic heart.
Ultrasound of stomach ? normal.
Ultrasound of liver ? normal.
ACTH Stimulation (Synacthen) test ? normal.
MRI of head and lumbar - normal.

Urine metadrenalines ? normal.
Anti-nuclear antibodies ? negative.
Smooth muscle antibodies ? negative.
Mitochondrial antibodies ? negative.
Gast PL Cell antibodies ? negative.
Liver Kidney microsomal antibodies ? negative.
Endomysial antibodies ? negative.
DNA binding antibodies ? negative.
Rheumatoid Factor ? normal.
Borrelia (Lyme disease) antibodies ? negative.
Infectious Mononucleosis ? negative.
Coxsacki B Virus ? negative.
Toxoplasama antibodies ? negative.
IgG ? normal.
IgA ? normal.
IgM ? normal.
Chromongranin A & B ? normal.
Compliment C3 ? 1.38 g/l ? normal.
Compliment C4 ? 0.28 g/l ? normal.

Glucose fasting test ? normal.
Insulin-like Growth factor 1 & 2 ? normal.

ESR ? 60 mm/hr - high.
C-Reactive Protein ? 77 mg/l - high.
Neutrophils ? 12.4 x10^9/L - high.
Platelets ? 460 x10^9/L - high.
MCV ? 73.0 fL - low.
MCH ? 22.9 pg - low.
MCHC ? 29.6 g/dl - low.
Serum iron ? 4.4 UG/L- low.
Iron Saturation ? 11% - low.
Haemoglobin ? 11.8 G/DL - slightly low.
Vit D - low, but I can't go outside, so not surprising.

I also had a few saliva cortisol tests which all came back low for most of the 4 samples. Because of this I eventually saw a doctor outside of the regular service who told me it was adrenal fatigue and prescribed an adrenal supplement, Nutri Adrenal I believe it was called. I took it for about 3 months but it made me MUCH worse. Couldn't sleep, constant racing thoughts, very tight and irritable feeling all the time, and no improvement of any other aspect. So I doubt it's a low cortisol/adrenal problem.

I think the last of the things I tried was a SAD ultraviolet light lamp, because of my feeling better in the summer, but sitting in front of that for 45 minutes over 2 days made me much more inflamed and gave me fevers. So light, for whatever reason, doesn't agree with me at all.

One last thing ? I?ve noticed as I?ve become more aware and familiar with my symptoms that looking back over most of my life, there have been small events that lead me to believe that whatever this illness is it has been sort of within me or lying dormant for most of, if not all my life. Looking back from the age of 8 I can think of about 10 separate occasions where I became ill for a brief period that had exactly the same symptoms as I now have all the time. Also the fact that throughout my entire life I have been such a low weight (up to 20 years old I weighed no more than 8 stone/120lbs) and found it impossible to put any on. I personally now believe that whatever is the matter with me has been there for over 10 years and I could well believe it is something I was born with.

Now, I haven't mentioned POIS up until now so I feel like it'd be best to finish with. Throughout the 6 years of being ill my POIS symptoms have come and gone, as well as varying in their severity. At one stage I would end up with raised temperatures, sometimes fevers after an orgasm. Last year for 6 months or so I had almost no problems with orgasm. My current symptoms are more general inflammation throughout the body, more sensitive nervous system, and bizarrely a very, very tight neck. The muscles become extremely tight and stiff the day after an orgasm, so much so that one time I couldn't sit up because I was becoming so dizzy from the tight muscles.
A few extra things to note about my sexual function - with this illness I have had a massive increase in my sex drive. It's just gone through the roof! Also, like so many other areas of my body, I have become hugely sensitive to any sexual stimulation. For about 18 months I was able to achieve an orgasm just by thinking mildly arousing thoughts. As a guy this was ridiculous! Almost any time I got an erection I was on the verge of having an orgasm. I would also quite often sweat and shake, heart rate pounding away etc. when becoming aroused. I even feel like I could "go again" very quickly after an orgasm, if you know what I mean. All of this feels like some sort of adrenaline or hormonal sensitivity. However, when I had my POTS tilt table test done, they also tested my adrenaline, noradrenaline and dopamine levels when both supine and tilted. Even though I was super-stressed and nervous, shown by high blood pressure and high pulse, my adrenaline and noradrenaline were both normal. Low normal in fact! I still can't work that out, especially when I was sweating, shaking, had a pulse of 140 and raised blood pressure. How without adrenaline can that happen!? Also my dopamine was, apparently, so low that it couldn't be recorded, but the POTS doctors also said this was normal and commonly seen, which seems beyond bizarre to me. How can a necessary hormone level be so low that it can't be recorded and that be normal?

I'm sure I've read some stuff on here about sensitivity to adrenaline, which with some of the problems I'm suffering with in regards to feeling like I produce adrenaline when I do pretty much anything, I thought some people may have opinions or ideas.

Anway, I can only apologise for the length of this and the amount of information included (and if any doesn?t make sense), it?s just that I?ve been ill for coming up to 6 years now and I'm still no closer to figuring out what's wrong with me. All the doctors I have seen are either uninterested or seem to have absolutely no idea and are not willing to really try anything, so I?m left to myself to try and figure it out. In 6 years there hasn't been a single suggestion or attempt to treat even part of what's going on. I was a happy 20 year old and university and for 6 years I've been housebound and totally reliant on my parenst, and most frightening is that there's no sign of figuring out whats going on.

As I said, I realise it's not strictly POIS but there are elements and some overlapping. If anyone has any ideas or thoughts on any of this I would greatly appreciate them. It may seem like nothing but even the most random thought might give me something to go on or somewhere to start.

Thanks for reading!


P.S. I recently did a urine cortisol test that I was fairly sure would come back high but was actually just above low (result 114, the lowest level of the range being 99)


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Re: POIS and a Mystery Illness
« Reply #1 on: April 14, 2014, 10:22:00 PM »
Just got to your post late at night. It is long, but I read the end and want to let you know I'll look at it again later.

For about 18 months I was able to achieve an orgasm just by thinking mildly arousing thoughts. As a guy this was ridiculous!

Dr. Komisurak, the scientist that is in charge of our upcoming research study, has studied women who are able to achieve orgasm by simply thinking about it. I remember reading about that. You should contact him. His info is posted in the thread where we are gathering info for him. Also email his assistant, her email is there too.

Caught one thing: my neck became pretty huge all of a sudden around 14-15 years of age, and I suffered from terrible strains sometimes because it was so tight. It is constantly tight, but not as severe as you are reporting. One symptom that never goes away with an orgasm is tightness in my posterior legs (hamstring, calf). I'm feelin ya man!
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.


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Re: POIS and a Mystery Illness
« Reply #2 on: April 15, 2014, 02:57:29 AM »
Hey Omron,

It sounds pretty severe ;

High BP, tachicardia, fatigue and overreaction to stress make me think to pheochromocitoma ; it's a small tumor on the adrenals that speed them up and make your sympathetic system overreact ;test for that is 24h of catecholamines(adrenaline/noradrenaline/dopamine) urine ; Maybe your normal met adrenaline means it's not that. If you have this kind problem, a non selective beta-blocker should help you a lot with your nervous system(unfortunately not a cure or not recommended for long term)

Second thought is mercury infection, the sudden apparition of your symptoms could fit with a release of dental mercury amalgam(do you have some ?)

Other though which is my area of investigation for POIS right now is malabsorbtion problem due to a class of food intolerances ; I believe that if we had a major organic failure we would be dead already with before a rapid deterioration of health ; Make me think that we have some unbalance and the body is fighting against something with protecting the vital function ; What we put in our stomach is the first culprit for me.
I'm investigating the gluten right now, there is pretty strange medical story withy gluten intolerance leading to very various could be something else ;  If I were you I would change my diet and see what happens ; the safest diet is probably the pale diet(just meat , vegetable and seeds with preferably not protein at night).Your weight problem point to this direction.

For the sun, try to take A vitamine


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Re: POIS and a Mystery Illness
« Reply #3 on: April 15, 2014, 07:38:01 PM »
Hey Andy.

So sorry to hear about your health problems. You have certainly been through a lot...

I must say, your symptoms don't sound like POIS to me, because of the lack of brain fog, depression, debilitating fatigue or forgetfulness after orgasm, and because you mentioned you can "go again" very quickly after orgasm.

That doesn't make your symptoms any less serious, though!!

You did post a lot of information, and there's no way I can make any more sense of it that you already have. I only have one piece of advice I feel I can give you:

do the things your body wants, no matter how weird it sounds!

An example of mine: I noticed that hot showers make me feel bad. that's why I only take cold showers now. After experimenting with my diet for years, I realized that everything I was eating was making my digestion go haywire (gas, diarrhea), EXCEPT for raw fruits, vegetables, nuts and berries. So I eat raw vegan now. I noticed that having an orgasm makes me feel shitty afterwards, so I avoid having masturbation. These things make absolutely NO sense from a medical standpoint, (doctors have stared at me wide-eyed in disbelief about all of these things), but it's what I need, and my body is grateful.

Perhaps you need to really listen to your own body, and FORGET what anybody else says you should do, or eat. Imagine there was no one else in the world. You were completely alone in your house. What would you be driven to do? You would probably turn off the television, lie in bed, drink tea, and read a book. And since you're not hungry, you wouldn't even search out food. Maybe your body NEEDS this! A friend of mine just fasted for 7 days, and she says she felt amazing doing it... on the other hand, i tried to fast for 3 days once, and I was MISERABLE! I just felt worse and worse as time went on, so I had to stop. Different bodies need different things... YOU are the only person in the world who can listen to YOUR body. Nobody else will ever possess that information. Sharpen your inner senses. Be kind to yourself, and do what your body tells you to do.
« Last Edit: April 15, 2014, 07:41:04 PM by LegatoMan »
Affected since Sept 2008. Very gradual onset of symptoms: Testicular atrophy, low libido, brain fog, lethargy, depression, digestion issues. Worsening of all symptoms the 3-4 days post orgasm.


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Re: POIS and a Mystery Illness
« Reply #4 on: April 16, 2014, 04:35:04 AM »
Thanks very much for the replies everyone!

I'll take them one by one:

Nightingale - I'll definitely look into contacting Dr. Komisurak.

LAPOISSE - I've been meaning to get a urine catecholamine test done for a while now, just not got around to it. Having read up a lot on phechromocitoma's I've never been fully convinced that's what it is, and the endocrinologists I saw felt I didn't have any sort of tumour from the metadrenaline results, but I think I'll do the catecholamines test just in case. Even raised levels, if not to the amount a tumour would produce, will indicate some problem that they may follow up on.

I don't have any mercury fillings though, so it's not that.

Diet is something I've sort of toyed with at times before but never fully committed to. It's definitely something I'm going to have to try.

LegatoMan - Yeah, I never thought it sounded exactly like POIS, but the fact that I do get increasing symptoms and feel worse after an orgasm made me think there must be some sort of correlation.

You're completely right about listening to my own body, which is what I've done for the most part of 6 years, it's just that doing so isn't getting me anywhere. Plus it means my life is severely limited, which is beyond frustrating. If I had to not do all the things my body doesn't like for 6 years and during that time it would have healed or repaired the damage, resulting in me being healthy or "right" again then it would be fine and worth it. But instead I do what my body asks, which is not stress it in any way, but it never improves. So clearly I need to find what is the underlying cause to all this or the chances of it changing or getting better are slim to none. But you're logic is right, and I do generally do everything I can to listen to what my body is telling me.

Again, thanks to everyone for the replies. I really appreciate you taking the time to do so.


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Re: POIS and a Mystery Illness
« Reply #5 on: April 16, 2014, 03:05:24 PM »
You're completely right about listening to my own body, which is what I've done for the most part of 6 years, it's just that doing so isn't getting me anywhere. Plus it means my life is severely limited, which is beyond frustrating. If I had to not do all the things my body doesn't like for 6 years and during that time it would have healed or repaired the damage, resulting in me being healthy or "right" again then it would be fine and worth it. But instead I do what my body asks, which is not stress it in any way, but it never improves. So clearly I need to find what is the underlying cause to all this or the chances of it changing or getting better are slim to none. But you're logic is right, and I do generally do everything I can to listen to what my body is telling me.

I understand. I'm so sorry to hear that.

Hang in there man! And keep us updated!
« Last Edit: April 16, 2014, 03:07:15 PM by LegatoMan »
Affected since Sept 2008. Very gradual onset of symptoms: Testicular atrophy, low libido, brain fog, lethargy, depression, digestion issues. Worsening of all symptoms the 3-4 days post orgasm.