I Can Tolerate Barely Any Medicines...

[Misfit Toy]

@snowman -I would most definitely post if anything positive happened. Right now I am on prednisone due to having 8 days of pain like I have never had before. I could not get out of bed and would brush my teeth at 5 pm. This is not like me....not at all. I think doing the methylation triggered it and I stopped everything.

I have reached out to a functional medicine doctor, which I will have to pay for out of pocket, but I am willing to do so as no doctor can spend more than 20 minutes with me and with all that I have going on..that's not going to cut the mustard. This person spends an hour with you and then emails, which is nice. Plus, I will have a complete full assessment and blood work for nutritional status, minerals, and pyroluria with also histamine.

I will only start new things when I know what is going on in my body. I have realized that even a mineral can throw everything out of whack and too much of one. So, I tread lightly.

I have NO appetite and especially in AM, which is a sure sign of Pyroluria. We shall see. I have lost about 14 pounds since January. I am tending to think I have a Copper overload, but I am no doctor and will soon find out.

The prednisone is helping me and I am getting some things done and the pain is less..just 5 mg.

I will keep everyone posted.

I agree with you 100%. Right now I am not really up for posting much. I don't want to be blasted for anything, nor do I want others to come out and say that my doctor doesn't know what he is talking about. Maybe he doesn't, but let me find that out on my own. I am overwhelmed, overwrought and too sick to take advice that is being "yelled" at me from a patient..patient being the key word. I often wonder, what would someone say to me if they were face to face with me? Would they react this way, or say this to my face? I guarantee the answer would be no. I am non threatening with a big smile and petite and I seriously doubt anyone would talk inappropriately to me, but then again...there are a lot of people who know everything...so you never know.

I want calm. I need calm. I can't have it any other way right now.

 

[Snookum96]

Thinking of you @Misfit Toy, hoping things start to improve for you soon. I'm glad you found a doctor that will actually spend some time with you. Hopefully whatever he suggests gives you some relief. Fingers crossed for you

 

[AndyPandy]

Sending you hugs @Misfit Toy. Hope the appointment with the functional medicine doctor goes really well.

 

[Misfit Toy]

Thank you @Snookum96 and dear @AndyPandy !

 

[john66]

@john66
I'd be interested to know more about the use of relaxin and how it helped you - I take zopiclone nightly and would dearly like to come off it.

Hi Mary, you could take Relaxin, while going down 20%. Per month. PM if you have any other questions.

 

[Changexpert]

I read the entire thread, and I too think MCAS or histamine intolerance is closely tied to gut health. I have tried C. butyricum (Miyarisan) and that caused itching skin everywhere. I am not sure if that was purely because of histamine reaction or oxalate dumping @Gondwanaland was referring to. I too cannot tolerate B6 or P5P for some reason and I am still trying to figure out why this is happening.

As far as controlling histamine goes, have you tried DAOSin, a supplement that provides enzyme to scavenge histamine? I have been on it for 3 days now, and every time I take a pill, my itchy scalp goes away. I do not think itchy scalp is solely caused by histamine, but it definitely is a significant factor based on my experience.

 

[Misfit Toy]

@Wayne and @ahmo -I came back positive for Pyrolle disorder. I had testing through the Mensah institute. Their labs and practitioner. I wanted to let you know as you tipped me off to it Wayne. Also, supper high copper and low zinc, low histamine which is interesting since all I do is sneeze? Vitamin D is super low. Over methylator.

So, there you have it. We shall see. Was given a protocol and will let you know.

Zinc has begun. Now, for the other supplements.

I will speak to the ND/doc next week to get the skinny on it. Skinny...interesting word since I am not eating. Gastritis.

 

[ahmo]

@Misfit Toy I hope these supps make as big a difference for you as it did for me. Where is the Land of Misfit Toys? Here's a really interesting vid from Dr. Theoharides, interviewing 2 women about the vast array of symptoms that make up thieir MC disorders.

 

[Gingergrrl]

@Wayne and @ahmo -I came back positive for Pyrolle disorder. I had testing through the Mensah institute. Their labs and practitioner. I wanted to let you know as you tipped me off to it Wayne. Also, supper high copper and low zinc, low histamine which is interesting since all I do is sneeze? Vitamin D is super low. Over methylator.

Hi MT, I know you didn't tag me but am curious about what you wrote and wanted to ask you what Pyrolle Disorder is? How did they explain your low histamine since you have MCAS? Also, how did they determine you are an over-methylator? Does this mean you should or should not take B-12 & Folate? Was it based on your 23andMe results or something different? TIA for an info.

 

[Misfit Toy]

@ahmo is he saying a cream will help MCAS? What?? MCAS is just like CFS.

Ahmo, I can't remember you mentioning this, but do you have MCAS?

 

[Misfit Toy]

@Gingergrrl -I haven't spoke to the ND yet. So, I'll get the low down then. So, interestingly enough, I was on an LDN site and up came an article written by this ND who studied with Albert Mensah of the Walsh Institute. I read it and felt birds singing in the background.

It talks about copper imbalances to zinc and pyrrole disorder. Basically, PD causes an inability to tolerate meds and the ding ding ding ding for me was......no appetite in the AM and profuse nausea which is the hallmark. I have no appetite and feel GERD. Anorexia is common with it, but not anorexia by choice.

Look up Pyroluria. I will find a link. It causes an inability to handle stress of any kind which I have been having, hence why I'm not on PR as much because any kind of upset makes me sick.

I started feeling like I have a mood disorder. My menstrual cycle kicks it off....that's a high copper, low zinc issue. This is confirmed by Mayo and reputable sources.....for once!!

I had special testing at lab corp that goes to a special lab. It wasn't cheap. Regular tests at Quest would not pick it up.

Nothing to do with 23 and Me test, although she is astute on that and knows Yasko but doesn't follow all of her beliefs. She believes do not follow 23 and ME.....follow bio type blood work. What you body shows, not just genetics.

About folate....my body screams for folate but it doesn't mean it's able to handle it.

Low histamine-can cause same symptoms as high histamine. It causes major depression.

I talk to her on the 22nd.

The Walsh Institute is top notch and I like her. She's caring and nice, but you know how it goes...we shall see!

Ps....she goes slow. She wants me on Zinc and B6 with P5...I think that's what it is...and a new diet. No chocolate for me but I'm okay with that.....for now. I can't eat it anyway...no interest.

Pyroluria causes extreme GI distress. And both Pyroluria and high copper cause pain and migraines.

Diet===SCREAM!

I want pizza, ice cream and lasagna with lobster and macaroni and cheese! (Can't have it anyway) No soup for you!! Not happening!

Folks, if I get cancer...I want you all to know...I will die with pizza boxes by my side. And margaritas.

((((Miss food so much))))

 

[Misfit Toy]

@Gingergrrl -this is a better description.

http://www.neuropsychotherapist.com/pyrrole-disorder-for-therapists/

 

[Gingergrrl]

Thanks MT, and it doesn't match my experience but I was just curious. Best wishes on finding the right doctors and treatments to move forward now that you know the diagnosis (or this particular piece of it, is what I mean.) That is great news!

 

[slysaint]

Please don't take this as a criticism, you are clearly going through hell, but you mention taking prednisone quite a lot. I have been going through steroid withdrawal for over a year and experienced the most horrendous anxiety, insomnia, weight loss, allergies plus allover dermatitis , burning skin , acute nerve pain.
I was lucky to find the ITSAN website and found a couple of thousand plus other people going through the same. The main culprit is topical steroids, but in my case, and others, prednisone also played a big role.
I am recovering (having had ME for 14years, and being over 50 I was expecting it to take a lot longer), and overall sooooo much better than this time last year. Yes I changed my diet several times, took supplements, probiotics etc etc but the main thing was I stopped all steroids. I'm not saying 'do this and all will be hunky dory ' but maybe do a few searches.

 

[Misfit Toy]

@slysaint -what was your dosage of steroids? I am on 2 mg going down to 1 mg. I am not sure if you are taking prednisone for ME or something else, but I was put on it due to an autoimmune disease where all treatments were failing me.

I absolutely agree though that prednisone is the devil. No doubt. I do feel at times like it can make me anxious and just spoke to my rheumatologist about it. I may have it compounded to even a lower dose than 1 mg, because just 2 mg helps my pain tremendously, but yes, there is a price to pay.

BTW, I sleep better on prednisone than off of it due to pain. I was put on it due to Sjogrens joint pain. I don't do topical steroids.

 

[Wayne]

I came back positive for Pyrolle disorder. ...... Also, supper high copper and low zinc, low histamine..... So, there you have it. We shall see. Was given a protocol and will let you know. Zinc has begun. Now, for the other supplements.

Thanks @Misfit Toy for reporting back on your test results. Are you finding it encouraging that you've been able to identify a big issue for your body, and can now do something about it?

Regarding the supplements you may end up taking... Though I don't have a definitive diagnosis for Pyrolle Disorder, I have been taking some supplements that would help PD induced nutritional deficiencies. In case you would be interested, the main one I'm taking and that has really made a BIG difference for me is: Source Naturals Coenzymate B Complex Orange, 120 Tablets. We need certain enzymes to be able to use B vitamins, and this product has them.

I checked out the LINK you provided earlier, and found a plethora of good information (thanks for posting that link). I thought the following list highlights very well just how serious pyroluria is. I also thought the testimonial that follows is quite revealing.:

Mental conditions that have been associated with pyroluria1

If you are currently working with a client who has been diagnosed with one of the following conditions and is struggling with treatment and exhibiting symptoms, a urine screen for pyroluria may be a good idea:​

• • acute intermittent porphyria
  • ADHD
  • autism/Asperger’s
  • rapid cycling bipolar disorder
  • depression
  • Down’s syndrome
  • learning difficulties
  • schizophrenia
  • Tourette’s syndrome
  • alcoholism
  • also associated with violent and criminal behaviour and substance abuse

...............................................................

When it looks like anxiety: A case in point

I (Matthew) was terrified by the long line ahead of us waiting to go through the screening gate at L.A. International. Loaded with bags, kids in tow, I desperately scanned for signs of a restroom in case my nausea and diarrhoea escalated into an emergency race to the toilet. The tricyclic antidepressant wasn’t working, as usual, and I was feeling increasingly trapped in this awkward and uncomfortable social situation. My wife gave me a knowing look. “Are you OK?” I grimaced. She knew exactly what was going on.

If I recounted a dozen or so similar stories, from my adolescence to middle age, you would probably give me a preliminary diagnosis of general anxiety disorder, maybe agoraphobia or social anxiety disorder. I have been through many tests to see if my nausea, stomach cramps, diarrhoea and fatigue have any organic basis, but no biological cause was ever identified. The best that GPs could come up with was a vague diagnosis of “some sort of chemical imbalance in the brain”, to which a tricyclic antidepressant was the best available answer (although I had experimented with beta blockers and Phenergan with similar results).

My career as an advanced care paramedic was mentally and physically demanding—rotational shift work; physical, mental and emotional challenges all the time. But my body was letting me down whenever I got too emotionally or physically stressed, mostly with stomach cramps and nausea. I thought I handled stress on a cognitive and emotional level very well—but my body didn’t. After a decade of shift work with the ambulance service I threw in the towel. But to my dismay, other less demanding work didn’t seem to change the fact that I was continually getting sick.

I had a degree in psychology; I knew the signs and symptoms of anxiety, knew I was developing some anxiety about my body letting me down, especially in public, but I also knew there was a biological cause of my sickness despite the medical profession denying there was anything wrong with my body. I knew when I didn’t eat well I was more liable to get sick, and intuitively knew there was something physical going on. I tried some elimination diets and guessed there was probably a milk allergy, but it wasn’t the complete answer.

Recently I visited a GP who is also a naturopath to have a complete check-up and find out, once and for all, what allergens might be plaguing me. It was through the ensuing battery of tests that I discovered there were some allergens, including milk, but more importantly, the GP suggested that I be tested for Pyrrole Disorder. The tests came back positive, and suddenly, after reading the symptoms of pyroluria, for the first time my history of illness made sense.

Now, with my system topped up with zinc, magnesium and B6, I am not getting sick like I used to. I probably have some implicit memories of getting sick in the past that could trigger some anxiety, but I also now have a clear cognitive awareness of what is really going on in my body, to overcome such implicit triggers. I am much more conscious of my diet to improve nutrient uptake, and monitor my stress levels and general metabolism to know when to increase nutrient supplements and when I can pull back. I am on a steep learning curve, and my health is a work in progress, but identifying and treating pyroluria has been life changing.
​

 

[Misfit Toy]

Wayne,

I am encouraged. It's nice to have a little bit of an understanding of what could possibly be going on with me. I just hope I get some relief. I don't see how B6 or Zinc could hurt me. I'm on a very low dose of the zinc.

She believes highly in diet. She's starting me off slow and doesn't want me on anything other than what's been prescribed....no B's as of yet.

I hope to see some progress. I'll be very excited if I feel like eating again. I miss an appetite!

 

[Wayne]

I'm on a very low dose of the zinc.

In Bryan Rosner's book, "Freedom from Lyme Disease: New Treatments for a Complete Recovery", he has a chapter entitled, "The KPU Protocol and Heavy Metal Detoxification". The KPU protocol is essentially the same as the protocol for Pyroluria.

He describes in detail what happens when zinc binding sites that have taken over by heavy metals are then subsequently knocked out of these sites by zinc supplementation. In short, he describes how normal zinc levels jump starts the immune system, which then often begins to clear out layer after layer of chronic infections in the body.

I think you would find it a fascinating read, which you can do online by going to Amazon. Just click on the link above, which will take you to Amazon. Then click on the image of the book on the left side. Then go to Chapter nine. It sounds like getting zinc levels back to normal can have huge potential.

 

[Misfit Toy]

@Wayne -wow! Thank you. What great info. Can you really read all of chapter 9 on Amazon? I will check into it. Thanks so much!

 

[Misfit Toy]

So @Wayne -after reading chapter 9, I'm a little nervous. Hoping I'm not overwhelmed with heavy metal detox, the last thing I need!