I am really worried, I have no appetite. None.

[picante]

With Pyrolle disorder, you have no appetite.

@ahmo, did you experience a lack of appetite? And isn't there more to treating this than just zinc?

 

[ahmo]

@picante In the months before I discovered GAPS my appetite disappeared. I'm inclined to think it was because everything was poisoning me. Otherwise, no lack of appetite. But now, rarely hungry, either, thanks to high fat diet.

Pyroluria supps include zinc, p5p, selenium, molybdenum, manganese


http://www.lymeinducedautism.com/images/1_KlinghardtKPU_09_PX.pdf
Short Version (36pg) Pyroluria/Lyme protocol. From Powerpoint doc used during Klinghardt presentation: Lyme Induced Autism

 

[Misfit Toy]

A barium swallow exam will show up problems with peristalsis in the oesophagus. If you have difficulties swallowing any particular foods or fluids, then a modified barium swallow which is done with a Speech Language Pathologist present, will also show up any issues with the muscles in the mouth and throat...

So far no problems swallowing food. No choking, etc. nausea and lack of appetite but today I did eat. Went up on zinc but not sure if that's it. Also on p5p and B6. No selenium. Also on magnesium. Natural Calm.

 

[CantThink]

How are you getting on now @Misfit Toy - did you see a GI?

A gastric emptying study (GES) can help diagnose gastroparesis. I believe there are also other tests for motility issues lower and higher than the stomach.

 

[Misfit Toy]

@CantThink -it's always something, but now it's something else. My appetite has been better. I am still losing weight however and I am the thinnest I have been in years. I am not a size 0. Not good.

I went to an endocrinologist on Friday and found out I have suspicious atypical cells in my thyroid. In other words, possibly cancerous. My thyroid is huge and has been for years. She wants it out as it's sitting on my trachea. My voice is raspy a lot and so...I am to see a surgeon.

sigh.....

 

[CantThink]

Oh gosh @Misfit Toy that's terrible. I'm so sorry to hear this news. The last thing you want is to need another surgery... They are so tough on our bodies. But what can you do... Nothing seems in our control eh?

I'm glad your appetite is a little better. I wonder if the weight loss is related to these suspicious thyroid cells... Seems possible as it's apparently not connected to what you are eating calorie-wise.

 

[whodathunkit]

@CantThink -it's always something, but now it's something else. My appetite has been better. I am still losing weight however and I am the thinnest I have been in years. I am not a size 0. Not good.

I'm so sorry! Prayers are with you for the best outcome.

 

[Misfit Toy]

Oh gosh @Misfit Toy that's terrible. I'm so sorry to hear this news. The last thing you want is to need another surgery... They are so tough on our bodies. But what can you do... Nothing seems in our control eh?

I'm glad your appetite is a little better. I wonder if the weight loss is related to these suspicious thyroid cells... Seems possible as it's apparently not connected to what you are eating calorie-wise.

I have spoken to a few people in this situation and yes, the weight loss can be the thyroid and my menstrual cycle has been nuts.

The good news I'm hearing is that this surgery is much easier to recover from than my wrist surgery. People are back to their lives in 2 weeks, but I'm sure with CFS it will be longer.

I'll have to go on thyroid meds and I hope my hair doesn't fall out. That's my vain concern.

But....this explains why I have such a hard time swallowing. I will be able to swallow again and who knows...I may feel better!

Thanks, guys....

 

[CantThink]

Haha - @ vain concern - I get it as I have alopecia and it sucks, especially if you are single and dating. I hope your hair remains intact - you have beautiful hair in your photos BTW.

The swallowing thing, I had a lot of issues with this until my hypothyroid was treated as my thyroid was swollen or had nodules on it or something I can't remember exactly. I found I had to moisten all solid food with sauces or I couldn't swallow it easily. It's much better now and that hell is a distant memory.

Wishing you much success with your surgery. Hopefully recovery will be smooth!

 

[Critterina]

You may feel MUCH better. I hope that is the case! Did they check your parathyroid or calcium?

 

[whodathunkit]

Haha - @ vain concern - I get it as I have alopecia and it sucks, especially if you are single and dating. I hope your hair remains intact - you have beautiful hair in your photos BTW.

Ditto to everything in this sentence!

 

[CantThink]

Ditto to everything in this sentence!

hello fellow alopecian!

 

[whodathunkit]

hello fellow alopecian!

Sounds like we're aliens from another planet. Which is not entirely implausible, come to think of it. At least not in my case.

 

[Misfit Toy]

Yes, I'm lucky to have lots of hair....notice how this happens to all women! The thyroid....

I don't know if parathyroid has been checked but I know I'll need calcium. The endocrinologist said that @Critterina. No problem.

You know, I'll just buy wigs. A pink bob one....a black one since I always wanted to be a brunette...I'll switch it up!

I actually love wigs.

But, I digress, I would miss my thick hair. Ugh.

I had a friend who had no hair at all due to alopecia. She was so beautiful anyway.

 

[CantThink]

Sounds like we're aliens from another planet. Which is not entirely implausible, come to think of it. At least not in my case.

Beep beep - mine neither!!

 

[whodathunkit]

Beep beep - mine neither!!

Ar-Ar-Ar-Ar Nanoo Nanoo.

RIP, Robin.

 

[CantThink]

Yes, I'm lucky to have lots of hair....notice how this happens to all women! The thyroid....

You know, I'll just buy wigs. A pink bob one....a black one since I always wanted to be a brunette...I'll switch it up!

I actually love wigs.

But, I digress, I would miss my thick hair. Ugh.

I had a friend who had no hair at all due to alopecia. She was so beautiful anyway.

I agree. It is crazy how many women I know have thyroid problems. It's like an epidemic!

The wigs are okay and can be fun. Problem is, it is not so easy to wear all in different hair styles like up do or ponytail. There are ways, but it is complicated and with M.E. it is not so practical as requires too much arm raising.

They can be hot and itchy. The worst ones end up feeling like a hat. The best ones are light as a feather and are expensive due to the cost of the hair.

Wearing one in bed is super weird and in my case not sexy haha. I have to just be me, which means the guy has to be okay with whatever way my head looks at any given time. Adds another dimension to dating with all these illnesses!

Hopefully as you have not lost your hair up to this point, it will stay strong and stay on your head. I have everything crossed for you.

 

[Misfit Toy]

@CantThink -oh, man....yes, good points...I forgot how itchy they can be. So right you are. My friend had the expensive one that was human hair. It looked real. I met her and never knew, but if you are not feeling well, who wants to wear a wig?

You are a strong person...and someone will love you, with or without hair. There is a lid for every pot.

 

[CantThink]

There is a lid for every pot.

Oh my gosh, I love that saying. Thank you @Misfit Toy!!

 

[Tella]

Hey it’s been a few years. I’m suffering from nausea and no appetite. Did anything work for u and how long did it all last? Thanks.