Doctors think I'm crazy

[Neutral]

Hi guys,

So my POIS has gotten so bad to the point where it's ruining my life. I can't work properly, I can't think straight, I can't socialize and I'm terrified of sex now because of the price I'll pay afterwards. As a result I've become very suicidal. I decided to seek the help of doctors to start down the path of recovery and figure out what's causing this. My original plan was to tackle it from every angle by seeing an immunologist, endocrinologist, gastroenterologist, allergist, urologist, and a therapist. Cover all bases you know? Hopefully hone in on whether my causes auto immune related or hormonal related etc. I'm on this horrible Obama care in the US which is so so SO bad healthcare. And so far I've only been able to see a primary care physician, a psychiatrist and two therapists. My primary care physician wouldn't send me to any of the specialists. What happens every time I see a doctor of some sort is this: I'll explain why I'm there and I'll mention POIS. Of course no one has heard of it. I attempt to explain, and they always cut me off and the first thing they ask is why I want to see all these specialists and "what makes you think it's auto immune or allergy related?" etc. They always jump to the conclusion that it's psychological. And I can tell they don't want to hear me ramble on anymore about these crazy "theories". I can't tell them any other doctor has diagnosed me with POIS because no one has and no one can. I started seeing this therapist who of course didn't even entertain the idea that there's something biologically wrong and thinks it's related to psychological issues from my childhood. And the psychiatrist I saw could care less to learn about the illness and just prescribed me anti depressant drugs and sent me out the door.

Now going into all this I told myself I have to be open minded and willing to try anything and everything. I have to. I'm desperate for relief and resolution. Now keep in mind none of these doctors I've seen have ever heard of POIS. But they have me thinking now, could this all be psychologically rooted for me? I know there's definitely people that have found it's an imbalance of some sort in the body for them. But has anyone been cured of POIS through therapy? Has it ever been known to be rooted in deep depression or anxiety? I suffer from really bad allergies and I'm allergic to pretty much everything you can think of, and my immune system is super weak. So these made good starting points. But now I'm confused and I don't know what to do. Should I not trust these doctors? I'm lost...

[demografx]

Neutral, thank you for posting that! It has been a MAJOR concern at the forum.

The item below is from our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg20525#new



EDIT: From above link (not clickable in graphic form)...excellent article [from Stef] for those of you whose physicians tell you, "POIS is all in your head," :
http://psychcentral.com/blog/archives/2010/10/04/its-all-in-your-head-living-with-chronic-illness/


Also from the Welcome Page:

"Show some of this [studies, articles, research sources, etc. from the Welcome Page] to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!"

[demografx]

Neutral writes: "My original plan was to tackle it from every angle by seeing an immunologist, endocrinologist, gastroenterologist, allergist, urologist, and a therapist."

I agree with this 100%.

Personally, I put my faith in an endocrinologist (after many failed attempts...just like you). It finally paid off. I'm not suggesting an endo for you necessarily, but I feel you're on the right track. My opinion.

Hopefully, other forum members will chime in on this great topic!

[Bulbo]

Hi Neutral
I was like you 1 year back....i was suicidal and procured the means to commit suicide but i couldnt do it.....Hold on.....Eating eggs daily has elevated my mood and now a days i dont care what people think about me.... now i accept my limitations and i dont care about it...... i think pois is a severe form of depression

[Going less Crazy]

I'll be honest, personally I could care less about psychologists.  If you actually think it's some way you are thinking that's causing pois than go for it, but for my pois that's nonsense.  I'd put emphasis on endocrinologists, gastro docs, allergists... try to get some hard results.  Is your diet not working?  Is it something else?

[certainlypois2]

Hi Neutral
I was like you 1 year back....i was suicidal and procured the means to commit suicide but i couldnt do it.....Hold on.....Eating eggs daily has elevated my mood and now a days i dont care what people think about me.... now i accept my limitations and i dont care about it...... i think pois is a severe form of depression

Pois cant be a severe form of deperession, if it was many of us will not be able to hold down a job and we will be suicidal.

[Neutral]

Thanks for the replies guys. Really helps put things in perspective for me. But it also scares me in the sense that I've made zero progress with the doctors I've seen so far.

I cannot see any of the specialists (like endocrinologist, gastro etc) without getting referred from my primary care doctor first. And last visit with him went terribly, as he flat out refused to send me to any of them without a good reason to do so. I partially understand. So I went to get blood work done and am waiting to go back to see results with him. If my bloodwork comes back with nothing abnormal, how do I convince him to send me to these specialists? I honestly don't give a shit about his opinion because he showed no interest in trying to understand this illness, but I need him in order to get access to the specialists who's opinion I DO care about.

[demografx]

I honestly don't give a shit about his opinion because he showed no interest in trying to understand this illness, but I need him in order to get access to the specialists who's opinion I DO care about.

Great attitude, Neutral! Hold your ground.

I told one idiot urologist (his staff had my test results shown as "female"!) that I AM an expert in this field so give me that %#¥£€%# testosterone testing corrected-to-male! plus the injections. Not those exact words (Injections didn't work well, so (years later) an endocrinologist put me on TRT patches). I got pissed, probably made up a story and gestured threateningly that if he didn't listen I'd cut his b---s off! Kidding, I didn't go THAT far, but he responded to my menacing attitude. It worked!

Threaten to report him and/or go over his (primary care's) head (but be prepared to really see his supervisor), whoever that is, and do what I did with the endocrinologist: I threw a bunch of early POIS papers at him and pointed out that one of the POIS studies was co-authored by...an endocrinologist! You can mention several MD's (not just the endocrinologist, Dr Schwartz) involved in POIS research from the studies and papers written.

Print out as much as you can from the Welcome Page (including the Welcome Page itself) and it's links
http://poiscenter.com/forums/index.php?topic=1.msg20525#new
and "throw it" on your doc's desk!

And look and sound mean!

This is life & death. Show it.

[trusttheprocess]

Neutral, I was feeling the same as you a few months ago, I tried just taking allergy medicine to prevent POIS for a while and it just wasn't enough.  I'm now taking a bunch of new supplements and they are working really well, they still only take away the worst parts of POIS though and not the whole thing, so I'm also seeing an endocrinologist in two weeks.  I agree with you healthcare in the U.S. is pretty horrible, I did have a pretty easy time getting an appointment, but I've had to wait a few months and its expensive.  All I had to say was that I was having trouble sleeping, and that I wanted to get a cortisol/hormone panel.  I plan on mentioning that I have POIS, bringing the printed wiki article (with references).  The POIS wiki looks official and lists endocrinology right at the top, and I'll bring the study which includes the POIS symptoms survey to corroborate it.  Finally, I'll bring the study which defines the first marker for POIS, decreased vagal tone and decreased heart rate. 

Like Going Less Crazy said, try to get hard evidence of something that is wrong, because then the doctor would have to do something about it.  Off the top of my head I can't think of anything that commonly shows up on blood tests for POIS sufferers, but usually everyone has at least one or two levels of something that are abnormal.  As a last resort, you could just show that your vagal tone goes down during POIS, but I'm not sure if that's something the doctor could do.  Some heart rate monitors can do this.  This is important because vagal tone shows how active your vagus nerve is, and beyond controlling some of the most crucial parts of your body it directly controls inflammation in the body through the chonlingergic anti-inflammatory pathway.  If your doctor doesn't understand the importance of that, explain that chronic inflammation is involved in around 8 out of 10 of the leading causes of death in the U.S. and that it is now accepted medical fact that inflammation is a cause of depression.

Since the doctors are probably going to take a while, and I'm in POIS right now (without my supplements) and know exactly what you are going through, below is the list of what I've been taking.  I researched them pretty closely to make sure they treated a cause of POIS, and did my best to make sure they don't interact with each other, but I tested a few out at a time so just use this list for suggestions DO NOT take all of them.  Research these supplements yourself, ask your doctor about them, and build your own list of supplements that help you.

before POIS:
Mast Cell Stabilizers
Curcumin
Green Tea Extract
L-Theanine Stress Formula
Luteolin Complex
Quercetin (w/ Bromelain)
Fisetin
Rosemary

Vitamins
B-Right B complex
Methyl B12
Vitamin D
Vitamin C

Histamine clearance support
Antihistamine
Olive Leaf Extract

Immune system support
Anti-inflammatory
Huperzine A
Singulair (prescribed for my asthma)
Kyolic Moducare CF
Hydrangea Root

During POIS:
Acetyl L-Carnitine
Fish Oil
5-HTP
Ashwagandha

These supplements have made my life much better, although I undoubtedly still have POIS, many symptoms have almost disappeared.  This includes cognitive ones, flu and allergy symptoms, intense discomfort, irritability and anxiety and depression have improved a decent bit.  By far the biggest effect though, that has been on my mind since I started taking them, and which I can confirm now that I've gone through POIS again without supplements is that I don't feel like my entire personality changes whenever I have an O now.  It still feels like a bad hangover for a few days, but its something that goes away fairly quickly with excericse.  I have a spreadsheet I started where I explain in detail why I included all of the mast cell stabilizers and B vitamins (with some good research from examine.com and some medical articles).  Was going to do the rest but then school started up and I've been really busy.  Also I have been trying to cut some of these supplements out but each one I've either tested extensively or strongly believe they help POIS, but if someone has tried one of these with no effect or negative effect please let me know.

[sameer7777]

How are you eating eggs boiled or how

[demografx]

I just added, from my 1st post after Neutral's opening post: "above-posted link (not clickable in graphic form)...excellent article [from Stef] for those of you whose physicians tell you, "POIS is all in your head" :

http://psychcentral.com/blog/archives/2010/10/04/its-all-in-your-head-living-with-chronic-illness/

[certainlypois2]

Thanks for the replies guys. Really helps put things in perspective for me. But it also scares me in the sense that I've made zero progress with the doctors I've seen so far.

I cannot see any of the specialists (like endocrinologist, gastro etc) without getting referred from my primary care doctor first. And last visit with him went terribly, as he flat out refused to send me to any of them without a good reason to do so. I partially understand. So I went to get blood work done and am waiting to go back to see results with him. If my bloodwork comes back with nothing abnormal, how do I convince him to send me to these specialists? I honestly don't give a shit about his opinion because he showed no interest in trying to understand this illness, but I need him in order to get access to the specialists who's opinion I DO care about.

can you switch  your primary care doctor, if you can try to find a doctor that is into alternative medicine or one that prescribes compounding medicine, the one i found in my area was more willing to work with me.

[certainlypois2]

How are you eating eggs boiled or how

go and read his old posts, it will answer your question

[Neutral]

can you switch  your primary care doctor, if you can try to find a doctor that is into alternative medicine or one that prescribes compounding medicine, the one i found in my area was more willing to work with me.

I can but the way this sad excuse for healthcare in the US works is it takes 1 whole month to change your PCP. So basically I have to wait a month to CHANGE my PCP, and then most doctors here can't see you for 1-3 months STARTING then. So I lose a tone of time waiting to see another doctor, only to find out he/she too can't help me... It's incredibly unmotivating and disappointing. Seeing how I've become suicidal because of all this, it really REALLY adds to the problem. The more I try to seek help, the more I realize with all these doctors I'm not going anywhere, and it causes even more suicidal thoughts.
I'm so nervous about my next appointment with my primary care where we're going to go over my bloodwork. He was so short with me last time. I waited almost 2 hours in the waiting room to see him, and he spent less than 10mins talking to me when I finally got to see him. After explaining POIS to him he said I'm at a disadvantage with my healthcare and he even admitted he's only getting $6 to see me through that insurance. He couldn't wait to leave. I was still asking questions when he left and just walked out of the room. Normally I would not bother and would seek out someone else. But my options are total garbage, and I fear I'll be left with no primary care doctor for the next few months, setting me even further back. I know I have to stand up to this asshole.. but it's hard. I'm not a doctor, and he is. I could tell he thought I was crazy when he asked me who diagnosed me with this.. and I said "myself". 

[demografx]

I know I have to stand up to this asshole.. but it's hard.

Most rewarding things are hard.

PLEASE: JUST DO IT!

[Bulbo]

How are you eating eggs boiled or how

I Always eat cooked eggs.... raw eggs can sometimes cause salmonella infection.. i eat 1 or 2 eggs a day.... mostly 1 egg a day

[Neutral]

I hate to ask this again but I need confirmation from you guys. I saw my therapist last night and he briefly asked about my symptoms. I explained. And again he went on to say that he thinks it's psychological and my symptoms are likely due to childhood trauma. A lot of my symptoms are close to symptoms of depression and anxiety etc. And I have definitely always dealt with depression from a young age. So it's really got me thinking if this is all psychological for ME. Has ANYONE ever found their POIS to be related to psychological issues and treated accordingly? If you've heard of someone on the forum that has please let me know who so I can get in touch. Part of me wants to believe it's psychological now just because it would mean I have a clearer image of what I need to do to cure myself. But another part of me is convinced it's inflammation/allergy related because of my symptoms and reactions and such.
I was so motivated when I made the decision to seek out medical help, and now I feel more lost than I did before haha.

[demografx]

I know I have to stand up to this [primary care] asshole.. but it's hard.

Most rewarding things are hard.

PLEASE: JUST DO IT!

...if this is all psychological for ME.

Unfortunately, this particular forum doesn't really support the idea that "it's all in your head", but best wishes. Maybe someone will respond affirmatively. If you look through the Welcome Page studies, and search forum posts, there might be something there, but most of us believe there's a physiological explanation.

That's why I re-posted to just do it.

[demografx]

How are you eating eggs boiled or how

I Always eat cooked eggs.... raw eggs can sometimes cause salmonella infection.. i eat 1 or 2 eggs a day.... mostly 1 egg a day

My intake, per day...hard boiled.
Not for POIS...I just like them.

[Going less Crazy]

I believe a number of poisers have tried antidepressants to no avail...  Including myself for less than a week, and each succeeding pill made the symptoms worse.  But that's not to say you shouldn't try them for your own pois.  Pois being psychological is kind of like a joke to me, and a big waste of time/money.  Again, just my opinion.  There are things that we find work here on the forum, such as benadryl, diet, niacin, olive leaf extract, which all seem to have inflammation in common as something they'd be used for.  That evidence, and good numbers of opinion, point to an entirely different cause.

Going to a psychologist and having him tell you that he thinks childhood trauma is the cause is like going to a priest and he tells you lack of prayer is the cause.  Again, my opinion.