issie

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I was trying to use natural progesterone creams and could not. It made me so sick. Gave me hot flashes and caused mast cell response. Made me angry and just irritable. Wasn't a good thing for me at all. Yes, I know a lot about MCAS and just was making a general statement. I take GastroCrom, Allegra and Zantac. Just thinking out loud that estrogen wasn't the only thing contributing to it. Haven't tried ketotofin. I had a mast cell attack one time and had to have nitroglycerin at the hospital and a very expensive over night stay. They thought I was having a heart attack. It brought down my extremely high bp and leveled things out. I've also tried midodrine and herbals that vasoconstrict and they all made me worse. If I use things that help dilate then I feel better. I think I'm peripherally vasoconstricted and overly dilated in the splanchnic area. I do best with an abdominal binder and not on my legs. But, there is a fine line in how much to do with vasodilating. Too much and then I have edema and pooling in my legs and feet. I'm not sure about the CO2 thing. When I had the hyperventilate thing in a horizontal position with swimming the only thing I think it could have been was either a mast cell response from the exercise or too much CO2 from rebreathing CO2 that built up in the bottom of the snorkel. Only things I can come up with. I have had them at other times too - but, this seems to make the most sense with the swimming episodes. Issie

Science girl, I like science too and enjoy the technical things and try to understand it. But, what you are showing in regard to progesterone, may be another clue to me and why I couldn't use progesterone. I have low renin and aldosterone levels - one of those odd ---some POTS people have things. I also feel that I'm overly vasoconstricted. Does progesterone trigger this response with the renin and aldosterone or is that just part of what happens during that phase? Maybe my renin and aldosterone levels being low is a compensatory thing to keep the vessels more dilated. But, what I can't seem to figure out about me is - I have EDS and you'd think my body would want to be more constricted --but, any time I use something that does that ---I'm worse. And that brings up another idea in regard to endometrosis and estrogen. Since we seem to be estrogen dominant - maybe we stay in that phase of it longer and that keeps our bodies from producing as much progesterone and that too could be a compensatory thing. But, it would also make us more estrogen dominant and keep progesterone low. And since estrogen along with NO is shown to have a more vasodilating effect - maybe that's why we are more estrogen dominant and that too could be a compensation. But if we are more estrogen dominant we would also have more chance of having MCAS - if estrogen can trigger a response to mast cells. I have questioned the males, if they have had their estrogen vs. testosterone levels checked to see if they are estrogen dominant. So far, none of them has had their ratios checked. But, there must be some connection with hormones here. Of course, I'm past menopause since having had a complete hysterectomy and many of us with MCAS who have had hysterectomy find that we get worse after surgery. So, we have less estrogen and that might explain some things. We need the estrogen to keep us vasodilated. And maybe we have too much progesterone at that stage. But, if that were true - why would I still have low renin and aldosterone? And why would my MCAS be worse - if I have less estrogen? MCAS has more things triggering it and estrogen isn't the only factor. I think this is bringing up more questions than answers for me. As for CO2. I had an observation with snorkeling and hyperventilation. I have had a couple of bad "attacks" with this. I did research on snorkeling and the chance of re-breathing CO2 from a snorkel and it causing a sort of hyperventilation. If like this article says it is low CO2 and not low O2 - why would this be the result? Issie

Some with autoimmune problems are finding that staying off dairy and gluten helps us. So you had dairy with your coffee, cottage cheese and probably wheat bread and some people react to peanuts. If there is a sensitivity and maybe not a true allergy (like what could happen with MCAS) this could be part of the problem. Plus there was probably a lot of sugar in the coffee and the jam. So, it could have been any of it. Sort it out one by one and see if you can sort what it was. Of course, if there is MCAS - you might react today and not tomorrow to the same thing. Issie

Could it be the dairy in it? I just had a bad reaction to chocolate. I do okay with coffee - even with caffeine. Just have to not have more than one cup. Issie

Progesterone always made me feel horrible. I couldn't use it either before or after a hysterectomy at a young age. However, it is supposed to help with estrogen dominance and that is thought to go along with endometrosis. I had endo too before my hysterectomy. Issie

Now Andy, you need to figure out if you have the trilogy that goes along with POTS and EDS. Many of us with these two things also have MCAS. When we started being treated for that ---things have improved. Issie

I don't know that article sort of indicated that it could cause some problems with others too. Unless, I misunderstood it. Seemed to indicate that everyone should be careful with H2's as it could cause proinflammatory responses. With inflammation already being an issue with most of us seems it could make things worse. But, with us with overactive mast cells we have to decide if it's worth the risk. Most of us feel that it is. I can only take 1/2 of one or it makes my stomach hurt. I won't use proton pump inhibitors as I feel we need a certain amount of stomach acid or we will create more problems with digestion - because we won't break down our foods properly. The 1/2 Zantac seems to be enough for me. But, without it I'm not as good. As with everything related to POTS it's a lot of trial and error. Also, one thing we MCAS people figured out is Tagament could reduce DAO and we need that to help with mast cells. So, we only are using either Zantac or Pepcid for our H2. There are quite a few threads on MCAS that can be looked up. You need to look up MCAD too as that is what we used to call it. Issie

He didn't go into this much detail, but it does sort of explain his simple statements. Thanks for the link. Issie

When I was having such extremes in swings with my blood pressure and the two numbers being near each other - I took clonidine for about 2 months. I got tired of being tired while on it. But, it stopped that swinging so bad. I do however think it caused me to have more edema. I guess that must be doing better - as I'm seldom even checking my blood pressures. So, if I don't feel weird or sick - I don't look to see what it's doing. Issie

That's what my doc at Mayo told me. I figured he knew what he was talking about. And it does have to do with those with MCAS. If the mast cells are overactive and it's not a true allergy - you have to block both types of histamines receptors. Some people add singular which blocks leukotrienes and then there are some on doxepin which is a form of H1 and also helps with serotonin and some find it helps sleep. Some of us have started out with Nasal Crom - as it's the same medicine as GastroCrom - only a whole lot weaker and is a mast cell stabilizer. He said that the H2 would convert into an H1 which wasn't being blocked and make things worse. But, he said you could start out with an H1 and that may be enough. Then adding an H2 if needed and then adding more things if needed. That's how I started out my treatment for this. I didn't get the results until I added the mast cell stabilizer - GastroCrom. It is suggested for some to take an aspirin in order to help with inflammation - but, it also causes there to be a slow degranulation of mast cells. Some people also use turmeric to help with this and quercetin. I saw one paper saying that they thought quercetin was as effective as GastroCrom. I use it too. I can NOT however use the aspirin. It makes me feel a whole lot worse. I can use the turmeric though. But, some feel that it makes them feel worse. http://healthypixels.com/?p=1044 Here's a pretty good article explaining some of the things histamine does in the body. Also, makes me more determined to stay with my diet as it also addresses histamine issues. I did try to find something stating what my doctor told me and so far can't find anything supporting his statement. But, will keep looking for it. But, I trust that he knows what he's talking about. He is an immunologist. Issie

Okay, from what I understand we are to NEVER take an H2 without an H1--you can take an H1 without an H2 however. I was told that the H2 would convert to H1 and cause all sorts of problems. I find that Allegra is my best H1 and doesn't affect my brain function or make me tired. I use Zantac as my H2 and only use 1/2 a pill. I also use GastroCrom which works on the immune system. MCAS can cause all sorts of problems. Something to not put on the back burner - but, to address. Some of us are getting good results when we did this. Issie

It sounds like you may have EDS. That makes us a bit clumsy and accident prone. Issie

GastroCrom also helps with the immune function and that also helps with allergies. Issie

One other thing that is no longer positive for me is my dsDNA levels. That indicated Lupus. That is no longer positive. Yayyyyy! Issie

The main thing I'm doing is to address my immune system and this helps to eliminate/keep in check the protozoa and co-infection associated with Lyme. It also helps with MCAS as there is a strong connection with autoimmune in relationship to this. I take a lot of supplements and am on low dose doxycycoline and anti-malarial herbs (arteminsin with SOD). I use a strong enzyme to break down bio-films that bacteria, virus and protozoa live in. If you break that down - then the immune system and antibiotics can get to them to eliminate the problem. I'm to use this enzyme 2 hours before taking either the antibiotic or anti-malarial herb and then at least 2 hours later use probiotics so that I don't get a yeast problem. The doxy and GastroCrom also helps with the immune system. The enzyme that I'm using is lumberkonaise. I also use Immune Formula of Symbiotics colostrum, grapefruit seed ext. (occasionally), turmeric, astaxanthin. I do lots of different supplements that address the immune system and inflammation. Some help with mast cell problems (quercetin, turmeric, ginger). I think what has helped the most is the low-fat vegan diet. When there are autoimmune issues some of the first things they take you off of is dairy and gluten. I'm also limiting sugar. There are several threads with lots of info on this. But, if someone wants my specifics I'll be glad to post that. Just can't do that right this minute. Issie

Most of us have seen an immunologist. I use, Allegra (causes less brain fog), Zantac and GastroCrom, Quercetin, Turmeric. Issie

I've had POTS, MCAS and EDS for most of my life. My first remembrance was when I was 8 years old after a vaccine. With my family there is a genetic component as my sister has OI and CFS and all three of her kids either have POTS or OI. One of her boys (age 13) was just DX'd with POTS, MCAS and EDS. He is also a fainter. We suspected it years ago - but, now it's official. The other boy has some sort of dysautonomia - yet not as severe and her girl is DX'd with POTS and EDS. I've lived a long, happy and fulfilling life. I've done lots and traveled a lot. You can have a life with this and having a positive attitude goes a long way. You have to learn to pace yourself. I never would allow it to stop me from what I wanted to do. I refused to give into it. Try to stay as active as possible and keep your muscle mass up. Support your collagen with supplements that improve that and since those of us with EDS get osteoarthritis at a young age - support yourself with whatever things you can do to stop inflammation so that you will be in less pain as you age. I believe that this is genetic first and something triggers it. Then there is autoimmune and inflammation. Working on those two things helps a whole lot. I wish I had been your age when I discovered how to address these things - as it might would have been easier for me. But, since you're young - listen to us older ones and support yourself NOW. There are things that you can do. What I'm doing is making a HUGE difference. Don't let this stop you from living your life the way you want to. Yes, the heart tachy is horrible and MCAS and POTS and EDS seems to be the type that has some of the most intense symptoms. But, you at least know what is causing it and now you can start to learn how to manage it. There's lots of discussion on the site about all these things - do a search and you can see that you're not alone with this. Issie

My neuropathy is reversing. I can now feel the little bumps in my Crocs. (Yes, I know they are ugly - but they sure are comfortable around the house. But, it can come and go. A lot depends on if I'm having edema or not. And external compression makes it get worse. But, if I'm pooling badly in my legs and feet - it's worth the compression. Working on autoimmune things is probably what is helping. Issie

I just have to tell my news. Since I've been working on my autoimmune system for about the last 7 months, things are really improving for me. I have reversed chronic kidney disease from stage 3 to nearly stage 1. At stage 4 they start to talk to you about dialysis. This is pretty much unheard of. I also had my eyes checked today. And my eyesight has gotten better. It has improved so much that I need to get new glasses and contacts and have less correction. I asked the doctor if they have ever heard of peoples eyes improving. They said not with a person who is nearsighted. The doctor wanted to know what I'd been doing. She is thrilled and said to keep it up. I also saw family today that I had not seen in about 5 months. They said that I looked better than they remember seeing me both in appearance and how I functioned. My sister-in-law, went so far as to say I looked better than she ever remembered seeing me. That's a 20 year time period. Just thought it may encourage others. I think addressing my immune system and my low fat vegan diet is what is making the difference. Issie

Don't forget the possibility of MCAS - that would possibly be connected to the skin disorders too. Issie

http://lup.sagepub.com/content/16/11/875.abstract http://en.wikipedia.org/wiki/Complement_component_4 Could be connected to Lupus. I have had positive dsDNA markers. Also, it is used to help detect MCAS and can show issues with mast cells. http://www.mybiosource.com/datasheet.php?products_id=684029 Maybe you've found an autoimmune cause of your POTS - despite what the doc said. May be something to pursue further. When I was having my testing for MCAS - this is one of the test that I asked for. However, even though my dsDNA was positive and an indicator for Lupus, the last time I had it checked since I've been doing all my autoimmune stuff ---I no longer test positive for it. Issie

http://www.healthguideinfo.com/types-of-ocd/p99037/ Too high dopamine. http://www.ocfoundation.org/glutamate.aspx Too high glutamate. Issie

Janet, glad I've been helpful. Yes, turmeric and ginger have been very good for me with pain. With any herbs, you need to rotate on and off them or they will stop working. Some people, however, find that turmeric makes their POTS worse. So, it's another trial and error type thing. Issie

Since I really feel a lot of our problems are autoimmune related - Symbiotics Immune Formula Colostrum works similar to IVIG without the side effects. May be of benefit with SFN too. I'm using this myself. Issie