Hi Friends,
Sorry I haven't been around much. I lost one of my dogs a few weeks ago and have been really low lately. I am one of those "crazy" women who feel that their pets are members of the family. She was young and seemed healthy, but suddenly stopped eating and became gravely ill. Finally discovered from an ultrasound that she had tumors in her kidneys. I put her to sleep and have been feeling so guilty...if only I hadn't been so wrapped up in my own illness, I might have noticed sooner.
My own illness has taken an interesting turn. My husband works as an investor and one of the latest businesses that he is looking into is developing a vaccine for AIDS. He had a meeting with these physicians last week and was late because I was having a terrible day with my stomach. He mentioned that he was late because his wife is ill. So after the meeting one of the doctors asked about me and my husband told him that I had been very ill since my surgery in 2005 but that I have always had problems since I was a teenager. This man is a pediatrician and asked about my earlier symptoms. My husband told him that I have always had unexplained anemia and horrible stomach attacks a few times a year. He asked if he could speak to his friend, an hemotologist, about me. Of course my husband agreed.
So, I met with this woman this week and she listened to my 35 year ordeal and asked me questions ...like if I ever had dark reddish urine....and I have off and on my whole life...doesn't everyone?? Apparently not. So at the end of our talk she handed me a bunch of literature on Acute Intermittent Porphyria, and said that she is 95% sure that this is what I have. She said most hemotologists see one patient with this in their entire career but that she is a specialist and has treated 6 and from her experience I am classic porphyria. So, I go in for genetic testing a week from Tuesday.
The nicest thing she said was that I must be a tough cookie given everything I have been through. I didn't realize how badly all these earlier doctors had made me feel about myself..treating me like a weak, complaining, hormonal female with imagined pain.
BTY, from my stool test from the CFS clinic I learned that I had two stains of staph in my gut and am now on my third week of cipro and no D. Am still feeling like I am 150 years old but hopefully things are changing for me.
Although I haven't been posting I have been reading your posts and either celebrating with you or sending prayers where needed.
Love,
Cristi
Update
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Cristi,
First, I'm so, so sorry about your beloved dog. Please don't blame yourself though. You've had way too much to deal with to add blame/guilt to your plate. You did the best you could and you don't really know if she could have been saved.
Second, what wonderful news has come your way about your condition. I am hoping and praying that this will solve a lot of your problems. I also hope you will be feeling better and better about yourself from now on.
How wonderful that your husband met a doctor who cared enough to try and help and could refer you to the right specialist!!
Good Luck!!!!
Love, Shirley
First, I'm so, so sorry about your beloved dog. Please don't blame yourself though. You've had way too much to deal with to add blame/guilt to your plate. You did the best you could and you don't really know if she could have been saved.
Second, what wonderful news has come your way about your condition. I am hoping and praying that this will solve a lot of your problems. I also hope you will be feeling better and better about yourself from now on.
How wonderful that your husband met a doctor who cared enough to try and help and could refer you to the right specialist!!
Good Luck!!!!
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Cristi,
I acquired my first dog late in life, and I can understand how you feel. I also worry that I am not doing the best I can for him because of my problems.
Glad to hear that the fatigue people are helping you. They solved one of my major problems. Since January I've had several hours of crushing depression and anxiety every morning. My doc and a shrink just wanted me on more SSRI meds, but I had side effects. It seemed to weird that I would only have this problem in the morning, and then never feel that bad later in the day. The fatigue doctor discovered low testosterone, cortisol and thyroid, and after a few weeks of supplements for those, my mornings for the last 2 weeks are no different than the rest of the day. It was all biochemical, I'm not actually crazy.
I looked up Porphyria and it's really complicated. I'm afraid all I retained was that it might be related to vampire myths
That is fantastic that a chance encounter led to you a specialist that can diagnose you!
Reggie
I acquired my first dog late in life, and I can understand how you feel. I also worry that I am not doing the best I can for him because of my problems.
Glad to hear that the fatigue people are helping you. They solved one of my major problems. Since January I've had several hours of crushing depression and anxiety every morning. My doc and a shrink just wanted me on more SSRI meds, but I had side effects. It seemed to weird that I would only have this problem in the morning, and then never feel that bad later in the day. The fatigue doctor discovered low testosterone, cortisol and thyroid, and after a few weeks of supplements for those, my mornings for the last 2 weeks are no different than the rest of the day. It was all biochemical, I'm not actually crazy.
I looked up Porphyria and it's really complicated. I'm afraid all I retained was that it might be related to vampire myths
That is fantastic that a chance encounter led to you a specialist that can diagnose you!
Reggie
No Gluten,casein,soy,eggs,yeast
Hi Shirley and Reggie,
Thanks for your kind words about my dog. I am trying to give my remaining dog lots of attention and extra walks as he is very confused and depressed. He has spent a lot of time searching for her. It breaks my heart but he seems to be doing better this week.
It is crazy to meet a specialist who dx me after a two minute conversation after the millions of doctor visits over the years with nothing. However, it isn't official till the tests are completed. It does put me in a waiting spot tho because of all the medicine restrictions for porphyria patients.
The test results from the CFS clinic found lots of hormone issues for me as well. My cortisol is high, DHEA testosterone, female hormones and aldosterone are all low normal. ACTH is good so she thought the pituitary hypothalamus were working properly. My liver enzyme ALT is even more elevated than it was last December so they are running tests to see if I have hepatitus. Three tests came back that said my blood was too thick....will repeat as this could mean the blood was mishandled at the lab. I have two heavy metals in my blood...arsenic and mercury?? TSH is too high 7.09 so I am further tapering off my methimazole . I will see were I am completely off the medication and go from there I guess.
Good news...cholesterol was good after going paleo for a year...actually it has always been really good but even better on the diet. Unfortunately if the porphyria comes back positive it needs a high carbohydrate diet ...in fact if it gets really bad you should have straight sugar ...go figure...I have been trying to control my sugar cravings my whole life.
Reggie...I am glad you are feeling better...I am hoping to cross over to the sane side myself someday. Are they treating all your hormone issues there or did they send you to an endo? My cortisol is high so I don't think I will get treated with cortef...however I read that if cortisol is high and DHEA is low that is also indicative of adrenal fatigue....but I don't know how they treat it. I also read that you shouldn't treat a thyroid until after you treat the adrenals. So I am actually just really confused. For all I know porphyria might affect the endocrine system. I have a lot to figure out.
Thanks again for the support.
Love,
Cristi
Thanks for your kind words about my dog. I am trying to give my remaining dog lots of attention and extra walks as he is very confused and depressed. He has spent a lot of time searching for her. It breaks my heart but he seems to be doing better this week.
It is crazy to meet a specialist who dx me after a two minute conversation after the millions of doctor visits over the years with nothing. However, it isn't official till the tests are completed. It does put me in a waiting spot tho because of all the medicine restrictions for porphyria patients.
The test results from the CFS clinic found lots of hormone issues for me as well. My cortisol is high, DHEA testosterone, female hormones and aldosterone are all low normal. ACTH is good so she thought the pituitary hypothalamus were working properly. My liver enzyme ALT is even more elevated than it was last December so they are running tests to see if I have hepatitus. Three tests came back that said my blood was too thick....will repeat as this could mean the blood was mishandled at the lab. I have two heavy metals in my blood...arsenic and mercury?? TSH is too high 7.09 so I am further tapering off my methimazole . I will see were I am completely off the medication and go from there I guess.
Good news...cholesterol was good after going paleo for a year...actually it has always been really good but even better on the diet. Unfortunately if the porphyria comes back positive it needs a high carbohydrate diet ...in fact if it gets really bad you should have straight sugar ...go figure...I have been trying to control my sugar cravings my whole life.
Reggie...I am glad you are feeling better...I am hoping to cross over to the sane side myself someday. Are they treating all your hormone issues there or did they send you to an endo? My cortisol is high so I don't think I will get treated with cortef...however I read that if cortisol is high and DHEA is low that is also indicative of adrenal fatigue....but I don't know how they treat it. I also read that you shouldn't treat a thyroid until after you treat the adrenals. So I am actually just really confused. For all I know porphyria might affect the endocrine system. I have a lot to figure out.
Thanks again for the support.
Love,
Cristi
Cristi,
Sorry to read that you lost one of your dogs. It's never easy to lose a pet, especially one that was very close to you. They do become members of the family.
I apologize for being so slow to respond to your post, but when I first read it, I knew absolutely nothing about porphyria, and I had a project that I needed to finish before taking the time to look into it. Now that I've had a chance to read a little about it, I'm not sure that I know any more than I did initially. LOL.
It appears to be a very complex issue, with a lot of ifs, ands, or buts, and I'm sure there are precious few doctors really qualified to treat it. You're right, your connection with a doctor specializing in the condition, was accomplished against almost incredible odds. It will be interesting to see what the gene tests show.
Love,
Tex
Sorry to read that you lost one of your dogs. It's never easy to lose a pet, especially one that was very close to you. They do become members of the family.
I apologize for being so slow to respond to your post, but when I first read it, I knew absolutely nothing about porphyria, and I had a project that I needed to finish before taking the time to look into it. Now that I've had a chance to read a little about it, I'm not sure that I know any more than I did initially. LOL.
It appears to be a very complex issue, with a lot of ifs, ands, or buts, and I'm sure there are precious few doctors really qualified to treat it. You're right, your connection with a doctor specializing in the condition, was accomplished against almost incredible odds. It will be interesting to see what the gene tests show.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
Well I certainly do need a specialist if you find it complex my friend! HaHa.
I am a perfect picture of acute intermittent porphyria before my surgery. After is more confusing but the hemotologist said that it is a strange disease and changes the more nerve damage accumulates. I am not familiar with any one in my family having it but apparently it is asymptomatic in 80% of the people who get it and females because of their hormone fluctuations tend to be the ones with attacks. If it came from my Dad's side..he is one of 3 brothers and his dad only had brothers and I have only one brother so perhaps they skated through with no symptoms?
The biggest thing I always give thanks for is that my children are healthy and now they will possibly have a 50% chance of getting this. Apparently alcohol is a huge trigger....luckily I have never been a drinker....nothing against it....I just got drunk after a few sips....wasn't all that fun. My daughter is at college now and is drinking a fair amount of alcohol...so I would think if she had the gene it would have gotten to her by now and it hasn't. I am keeping my fingers crossed.
I hope your project went well...I know this is a busy time of year for you.
Love,
Cristi
Well I certainly do need a specialist if you find it complex my friend! HaHa.
I am a perfect picture of acute intermittent porphyria before my surgery. After is more confusing but the hemotologist said that it is a strange disease and changes the more nerve damage accumulates. I am not familiar with any one in my family having it but apparently it is asymptomatic in 80% of the people who get it and females because of their hormone fluctuations tend to be the ones with attacks. If it came from my Dad's side..he is one of 3 brothers and his dad only had brothers and I have only one brother so perhaps they skated through with no symptoms?
The biggest thing I always give thanks for is that my children are healthy and now they will possibly have a 50% chance of getting this. Apparently alcohol is a huge trigger....luckily I have never been a drinker....nothing against it....I just got drunk after a few sips....wasn't all that fun. My daughter is at college now and is drinking a fair amount of alcohol...so I would think if she had the gene it would have gotten to her by now and it hasn't. I am keeping my fingers crossed.
I hope your project went well...I know this is a busy time of year for you.
Love,
Cristi
Hi Cristi,
I'm very sorry to hear about your dog passing away. I'm glad, though, that she didn't suffer for a long period of time.
I am glad you are feeling better and that you are finding solutions to your battle with MC and other issues. I hope you can get started on a solid treatment plan and put all of this behind you soon. Keep us posted on what you learn.
Take care,
Magyar
I'm very sorry to hear about your dog passing away. I'm glad, though, that she didn't suffer for a long period of time.
I am glad you are feeling better and that you are finding solutions to your battle with MC and other issues. I hope you can get started on a solid treatment plan and put all of this behind you soon. Keep us posted on what you learn.
Take care,
Magyar
Celiac (gluten-free since 2000), Lymphocytic colitis since 2000.
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kate_ce1995
- Rockhopper Penguin
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- Joined: Wed May 25, 2005 5:53 pm
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Hi Christi,
So sorry about your dog. You probably didn't miss anything. Animals can develop problems very quickly and go from fine to horrible in such a short amount of time. They are a part of our family...mine are all cats, but they are definately my kids.
I'm also very glad you are on to a doctor who might be able to help you. We land in the right places for the right reasons sometimes...makes you have faith when everything else is going haywire!
Keep us posted and skritch your other dog's ears for me. They do worry so when one of their pack (human or otherwise) goes missing.
Katy
So sorry about your dog. You probably didn't miss anything. Animals can develop problems very quickly and go from fine to horrible in such a short amount of time. They are a part of our family...mine are all cats, but they are definately my kids.
I'm also very glad you are on to a doctor who might be able to help you. We land in the right places for the right reasons sometimes...makes you have faith when everything else is going haywire!
Keep us posted and skritch your other dog's ears for me. They do worry so when one of their pack (human or otherwise) goes missing.
Katy