Maiysa

I've only read half of the article. My son has a terrible case of crohn's, stage 4. And the other day I looked up the correlation between elevated tryptase levels and crohn's, because they said my elevated tryptase levels are possibly genetic. I also notice my son has some autonomic symptoms like myself. Anyhow, I found several articles on the correlation between crohn's and elevated tryptase levels (high histamine). But according to this article, I am wondering if a low histamine diet would be good for him. HE is on Humira and it is helping but he is still very sick. It will be interesting to see what this diet could do for him. But trying to get a 23 year old college kid to change his diet....not so easy. Thanks Issie, I'm going to send him this article.

Issie thanks for posting the article. Haven't read it yet, but that sounds like awesome news to me!!! The hematologist keeps mentioning bone marrow and if I could get out of that, that would be great!!!!! I was also told that they keep the biopsies for a long time. Last year after my spinal tap they told me they keep them in some type of storage bank and cold for about 10 years. But endoscopies are so easy if I would have to do that again, much easier than BMB I would imagine.

Thanks Issie. I will ask doc for a test. I don't have the hyper joint situation. Do you have this? But it sounds painful, so sorry for you. I'm only double jointed in my elbows, but other than that nothing with my skin or other joints. Mast Cell- I've never had a the 24 hour methyhistamine test and the hematologist saw that my numbers were high for tryptase and I took the test twice and it came out 11.6 and 11 and he said don't worry about it. It's just a lot of inflammation and told me that I would not need to be treated for MCAS after he told me he was sure I had it. So I'm really confused. I took the test both times and I was not in a flare up so waiting for a big flare up and flushing to get another test. Yeah, I'm not so sure he is up and up on the MCAS issue, but is sending me to another doctor to look at it. They never put me on the H1's or H2's, that medicine is just from my family doc that has no idea about MCAS. So I'm taking those meds for other issues. Haha. I'm sooooooooooo confused as my doctors basically have me on a yo yo string. I go May 5th to doc who deals with MCAS and hopefully he will be able to help, if not the doctor on the East Coast, Dr. Castells???? said they would take me as a patient since my levels are so high. Do you know anything about the CH50 test? My doc said that showed a lot of inflammation. But just said see you in a few months. Wow. Nevada is a tough place to find a good doctor. But I keep trying. Night night Issie!!

HI Issie, I had never heard of this until you mentioned EDS on another reply a few weeks back. Is there a test to take for it. Does your neck hurt? I also notice today that something is swollen on my butt bone, like a tendon or something now. Ugh... I think I told you that they are still working on the MCAS diagnosis. And for some reason a test called CH50 came up elevated, so just a lot of inflammation doc said. Thank you so much for all that information about not taking an H2 without H1. I can't remember which is which. I'm still working with children's doses since it's still making me feel very strange but have worked up to a half a children's claritin dose once a day. But I notice if I take the children's zantac alone I get so dizzy that I have to lay down. I actually quit taking it for a while as it was making me sick. So I assume this is the H2....I will have to look it up. The doctors haven't told me anything yet on what to do for mast cell, they said I definitely have an elevated amount. I'm just taking claritin for severe allergies and zantac for stomach issues. But this is good information. Thanks Issie. Sorry photographer to hear of your issues. I have not heard of those virus's. Will have to check it out. Fatigue is also knocking me down lately. I feel for you.

Hi Sue, Florida sounds so nice right now. Enjoy that ocean. When I went to Mayo I explained to them that I couldn't stay all week and they did their best to get all of my tests in three days but told me that I might have to stay for another week. They told me they wouldn't know how long I had to stay until all the tests were in. Good luck and hope and pray you get some answers.

Glad you were able to read it Wyoming gal! I just seem to have issues with any chemicals. I never used to be like this. But I guess I didn't need those bad chemicals in my body anyhow. For us it's best to eat as healthy as possible. But I can't seem to kick a chocolate donut once in a while. haha

http://articles.mercola.com/sites/articles/archive/2011/11/06/aspartame-most-dangerous-substance-added-to-food.aspx This is just one short article Wyoming gal. Not trying to scare you, but most artificial sweetners are bad for you. Even the ones that they say are okay. Like Splenda is actually a bleached sugar and goes through a terrible chemical process. So I tried stevia which is all natural, but unfortunately for me it made me feel really strange and had neurological problems from it. But most can use it with zero problems. So I now just go with plain old water and go straight for the sugar if I have too. But of course it's not for everyone. I also make my own herbal tea and then I can put my own small amount of sugar in. I like agave as a sugar substitute, it's a natural sugar, but it doesn't give you the sugar surge like most sugars do. But aspartame...is poison. Good observation on your part.

Thanks Kim. But am sorry you have to deal with this too. Hope you're feeling better. I feel like I have the flu a lot and can get fevers sometimes of about 101 for days. I notice it's usually around my period. Who knows what that is. I thought the bruising was from the anemia and assumed it's been the cause for a few years now. But they said the anemia is only slightly low right now. But even if I stretch, the area I stretched at will bruise within a few hours. The other day I walked a little bruises formed around my ankles within an hour. Or even if I sit in a chair, there will be a line of bruises where the chair hit the back of my thigh. Bizarre. I just had extensive blood work at the hematologist the other day and they took 11 viles of blood and told me they tested me for everything. What did come up abnormal was my tryptase and a slightly high CH50. Doctor said it just proves a lot of inflammation, and also slight anemia. But doc said it all looked pretty good. And he works at the cancer center. So I'm pretty clear there and ANA was normal. Thank God. It really does feel like something in my tendons or in that area is always inflamed. But will ask for an xray, that's a good idea. Thank you!

Hi Everyone, Unfortunately the autonomic neuropathy was worsened by my thyroid numbers being extremely hypo. But now that my thyroid meds have been increased my body is still aching terribly. It's putting me out of commission. My joints are NOT swollen, but they hurt, almost like a tendon or something in inflammed. Mostly at my groin and shoulders and I'm full of bruises, about 12 right now just from a lil walk. And my neck is in very bad shape as well as my spine has become more stiff than usual. I've been doing light yoga, and it has helped so much, but I've noticed the pain in my joints is slightly worse. I thought maybe this was all thyroid related, but just thought my muscles and pain should be lightening up after new thyroid meds. Sooooooooooo frustrated. I've also noticed that my eyes are slightly swollen and sunk in. Wish I knew what the cause is. Mayo said the above diagnosis is only part of it. There is a missing link somewhere and they have tested me for most everything they can think of. Nothing shows, except my tryptase levels are elevated to 11, which another doctor is working on a mast cell diagnosis. But have another month to wait. I also posted on that site to see if pain is a possibility. I'm hoping they come up with the fact that I'm not eating enough chocolate donuts!!!!! Anyone else have this pain... If so I'm sorry for you. Thanks for listening!

Dani, sorry to hear that. I did a payment plan. Whatever you do, try to set it up with the local Scottsdale office. Don't use the 1-800 mayo number. I think that takes you to the Rochester office and unfortunately they are a bit tougher to work with. I had a much easier time working with the girls in the Scottsdale office. I also went downstairs to talk to the finance people and they were helpful. I actually have had about a $13,000-15,000 bill since 2007 and we are almost paid up. Yay!!!! Knock on wood! PM me if you have any questions. At one point I had a person from the main number call and tell me that I had to pay all of it right now!! And was quite aggressive, but I stuck to my decision to make a payment every month even though the guy on the phone didn't like it, there wasn't really much more I could do. Hard to squeeze blood out of a turnip. Also, so glad you are feeling better. Sorry to hear you were sick on top of this other situation. Hang in there. Also, I tried for months to get my insurance to cover Mayo even though there is not autonomic testing on plan, but out of network, they denied it. So I understand your frustration there!

Good luck Sue!!! Are you visiting Rochester or Phoenix? I think there is one in Florida too. Okay, keep us updated.

That's great to hear Linj10. I hope they told you that you have to take it first thing in the morning and an hour before a meal. Also, I was told no tea or anything and only take the pill with water, not even a lemon. I'm sure they told you this already, but just in case so you can get the benefits as soon as possible. Because my stomach gets acidic quite easily and my blood sugar is sensitive in the morning after I take the thyroid pill, I only wait a half hour to eat. But I still seem to be absorbing the thyroid meds anyhow. We think the reason my thyroid pill is not absorbing is because I'm on large amounts of iron, so it's blocking the absorption. Anyhow, I hope you start to notice a difference soon. I've heard it can take about 4 to 6 weeks to notice a difference. I've been on my new dose for about 3 weeks and I was at 11 and it really was terrible. But I'm just now starting to see some difference. I think for the full affect, it takes up to 3 months. So hang in there.

Kimbelgirl, Aren't the schnauzer's awesome. On sick days she sits on my stomach and doesn't leave and just stares at me. That's loyal. But sometimes I get fevers and wonder if she is just enjoying the heat.

So sorry Elfie. I understand where you are coming from. I hope and pray that this is temporary for you. I went to town with my husband today and was so excited because I felt better and within a few hours I was in pain and in no good shape to be doing anything but going home. It can be a bummer. I did a tiny bit of whimpy yoga tonight just to make me feel like I did something and it did help my mood a bit. But somedays it's too much. Hang in there.

Issie, thank you for that information. Well, at least if she is posting on other sites, that's good news!!!! That makes me feel better. Thanks again!! Wish we all lived in one town so we could all meet if possible and support each other. This is the pits sometimes. But could be worse. Have a healthy day!!

HI LinJ, I have had a lot of issues with thyroid. Your numbers point more to hypo so it's going to make you feel real tired. Even a TSH of 5 now days is not considered normal. So you are above, which actually means your thyroid is not putting out enough of the thyroid hormone. They can probably put you on a low dose that will take a while for that to get back to normal. Sometimes these tests can also go according to your T3 or T4 levels, although I can't remember the reference range right now. My thyroid issue is a mess and those blood tests don't always show the entire story. Everyone is right to say for you to get a good endocronologist. Anyhow, my TSH was recently 11.6 and it can make dysautonomia worse, so you have to get that under control. Also, all the symptoms you mentioned above are part of it. My feet have been peeling lately and I thought it was my soft water tank that cost me $800. Come to find out, it's just my thyroid. Lol. And to make you feel better, I react to most everything. Even pepto bismol sent me to the ER and the thyroid pills didn't do much, except give me a slight acidic feeling in my stomach the first few weeks, nothing really worth worrying about. Of course everyone is different. But good thyroid is very important for any dysautonomia issues!!!!! Hope you can get in soon. Maybe try to explain to the doctor that you also have Dysautonomia and need to see someone as soon as possible so as to not worsen your already difficult situation. PS I see Libby already gave you a lot of good information. OKay, let me know if you have any questions.

HI All, Has anyone heard from Mack's mom? I tried to send her a message and it says she cannot receive any more messages. I'm a bit concerned about her and am hoping that she's just happily busy. If anyone wants to PM to tell me if you know anything that would be great. She's just usually very active on here. Thanks!!!

Thanks for posting this information Rachael. I didn't know that cooling vests are available. That's wonderful news since I live in the desert and the summers are very difficult for me. I'm constantly finding ways to rig ice packs around myself since I've found this is very helpful. Thanks again. Good Health to you!!!

So glad you asked this question. I have the same thing and check my bp and it's pretty close to normal. But I've been so dizzy that I can barely make it from the couch to the kitchen without feeling drunk. So I upped my pretzel intake (salt) and am up to 2 and half liters of water that really helped a lot with the dizziness. I'm also doing a little bit of pedialyte and gatorade. I also notice if I have any kind of neck pain which is almost daily, but if it really bad, I'm very dizzy. I just wonder if the nerves are so inflamed back there that they are affecting blood flow. So if that's the case, then ibuprofen helps a bit. Boy, it's a challenge every day isn't it!

Oh my gosh, I'm so sorry Heissovereign. Ah, this is terrible. I pray you are can heal soon and feel better. May I ask if you have ever had a tryptase test taken? The rash is interesting and made me think of this. I don't know much about any of these things but just a thought. I'm sure you have enough people telling you what they think is wrong, but I have had convulsions several times and they found my tryptase levels are high and could be a correlation. Still in middle of testing. Hang in there. Thinking of you!!

Hi Mandy, I too have orthostatic intolerance, used to have a form of POTS for about 2 or 3 years and now have autonomic neuropathy and a lot more diagnosis. But my symptoms are somewhat similar to yours. My children are grown and out of the house. haha. But so grateful this didn't happen when they were too young, but it did happen in my sons junior year and it was hard on him because I was almost completely incapacitated his last two years of high school and was hospitalized 4 or 5 times since then for various issues. Anyhow, acceptance is the hardest thing for me and am still working on it. But I stay as positive as possible. I am always trying new things, just downloaded an app today for healing hypnosis and I love it. I do Healing Yoga on days even when I don't want to, just a little bit helps. During bad flare ups I try to write with an erase marker on the window that I have a view of first thing when I wake up that says, this too shall pass or something positive to remind me, this feeling isn't forever. I read lots of bible versus and positive quotes to keep me going. Most days I stay home, which is the opposite of my old me. Yesterday I couldn't do much and felt very very sick and had lots of pain. I slept. And then like today, I got up and took it easy, but putz around the house, wrote on my computer and was even able to go to dinner with my husband and meet the children for dessert. But I don't know what tomorrow will bring. For some reason in December for 3 weeks I was afforded the luxury of riding my bicycle several times a week. IT was amazing. But don't know what happened again since then, but I'm more hopeful because it had been 5 years and I used to be addicted to my bicycle and when that was taken away it was really hard for me. So December gave me some hope. It's a day to day thing. I used to have an amazing job, but not sure I will be able to work again, but we'll see. But I have an awesome family and have much to be grateful for. I count my blessings every day that's for sure. I see you have little ones. I am sending you good health so that you can keep up with them. They are blessings aren't they. OKay, Good health to you.

I found an app by Darren Marks-hypnotherapist direct ltd. It's called Healing Hypnosis. I downloaded it for about $3 or $4. Anyhow, I just tried it and I think it is one of the nicest video's or audio video's I've found. It was my first time meditating in a long time. But my dog bringing her bone and chewing it in my ear didn't help, but I think it's going to be worth a try. I'm going to keep at it, as I think it will really help to relieve some stress and pain I'm having. He offers it on several devices iphone-ipod-ipad and googles android phone. I know not everyone can afford these items, I got a Kindle Fire from my family for my birthday and I downloaded it on that. I love this Kindle Fire device, it's so handy. And I just download from wi fi to get the apps, so there is no monthly service to pay for. I'm so out of the loop and don't have a smart phone so this works great. Although I see if you are with AT&T they are giving iphones for free as long as you have a monthly service, but I'm too cheap to pay a monthly service. This app is the first thing I've had to pay for on the Kindle since I get a lot of the library books for free. Yay. And I also got 3 months free of lots of awesome magazines for now. Anyhow just wanted to share something besides about how sick I feel.

Hi Dani, Good to see you got an appointment with Dr. Goodman. Anyhow, my insurance doesn't cover them either and we had already spent about $10,000 with the valley fever situation since no one here could figure it out. So For Dr. G, we went to the financial office there and explained to them our situation. We paid up front for the down payment, like about $250 or something, but they let us make payments on the Qsart. You can get a pre expense report as to about how much it's going to be from the office in the basement floor. We agreed to $100 a month, they argued with us at first, but that's how we did it. But if you don't want to do that, my insurance does cover Dr. Levine's office in Texas for some strange reason. But you can call there and ask if they take your insurance. Also, Dr. Goodman understood we were already in financial bind at the time with all the money we already owed Mayo so he was very understanding and wonderful about sending tests for me to do back home through my insurance. And whatever you do, don't talk to the main office about financial things, I think it was the 800 number, they are just operators and they were very difficult. I had a terrible time with them and they demanded the money right now after I already made an arrangement with Scottsdale, so be sure you always are able to talk to the Scottsdale financial people. They were much more compassionate and flexible. I hope I don't cause any issues with this post, it will probably be edited. Not sure I'm allowed to say specific names if it's negative. Sorry girls if I caused you some work. If so, I can just PM you Dani. But I hope others know that Mayo will work with you. It just might be a little bit of work. Good luck Dani!! I hope you got a little further with your issues and getting some help. Dr. Goodman is really worth the money. But I'm sure you're not working and this can be a financial burden. IT's just not fair sometimes that our insurance can't cover these docs who have potential to help us. You can also file some paperwork with your insurance explaining why you have to go to him and that there are no other testing facilities near by with your insurance. I tried that and it didn't work for me, but hopefully your insurance company will be more open to this.

And for me ditto what Doozlygirl said. But I haven't tried the MCAD treatment yet. Still working on diagnosis, even though tryptase came out to 11 again. I also don't have POTS. I used to when I was battling a serious lung infection and toxic thyroid for a few years. But I do have hypo orthostatic intolerance. I never know the difference between that and POTS. Sorry I get confused lately, easier than usual. But Rich that is a good question, what other tests are there for Mast Cell. My IgG or however this is written came out normal, but not the tryptase. But IgE or something like that came out abnormal, saying I'm sensitive to infections. But nothing serious...knock on wood.

Sorry to chime in on your POTS thread-I'm just Auto. Neuropathy and Orthostatic intolerance person. But alcohol is a big trigger and I will instantly black out. I went to my friends initiation of their new marble bar they set up in their backyard. I told him I couldn't drink, but he kept insisting, 47 years old and I caved under peer pressure. So I took a sip of his wonderful smelling pear margarita, it was probably less than a tablespoon and not 2 minutes later, my head hit the bar. Passed out instantly. WE think all the alcohol was on the top and I must have got a dose of it. They told me I was the first sober person to pass out at their new bar. The doctor at Mayo laughed when I told him this story and said, yeah, alcohol and your condition don't mix. Evidently!!!