arizona girl

I don't know but I am hoping! PCOS and endo are suppose to improve after menopause. I've now been waiting ten years for that to happen. Maybe just maybe I'm starting to move in that direction, my fsh is now 13. I've had some irregular cycles, but I've always had them to some degree. No hot flashes or night sweats. Have had night sweats on and off for decades and now know they usually mean I have an infection on board. Haven't had those lately either. I hope I'm one of those people who it just stops with out a whole lot of symptoms. Wouldn't that be nice for a change of place. If I could get rid of some of my pain triggers through menopause that would be lovely. So, here's hoping!

Hi welcome to the forum science. You might not hear back from the original poster as they have not been online since 2011. You could try personal messaging her, as she would get an e-mail notification. Rama's one of our critical thinkers, he knows he can be a bit blunt. He is one of our better researchers and is good at giving the other side of the picture. He means no harm, as he said. He also has his theories, which I don't always fit the research out there so far. I myself have autoimmune and primary immune deficiency and do get ivig to treat that. I also had petchial endo/pcos/colon rupture. Am a bit hypermobile. I believe my dysautonomia symptoms which include pots, orthostatic hypertension and near syncope happens as a result of an autoimmune attack on my small fiber nerves (autonomic nerves). I have had some improvement of symptoms with treatment. I am also treating hashi, udct, lichen and a gene defect called mthfr and with the addition of those treatments. My recent lipid and inflammatory tests have greatly improved. My crp, esr, mpo and lipids have all dropped by a lot. Still waiting on my thyroid profile. One of my docs said the immune system is like a circle once there is damage in one area it can effect any or all components of the rest of it. Really depends on you genetics and where you are weak. Who would think one person could have some many different conditions. I personally think they are all connected some how. So welcome, this is a safe place, and we do moderate the forum. If there continued to be a problem one of our moderators would have stepped in.

So happy for you, loss of kidney function is scary. You've had a lot to deal with. I've had my problems but not as serious as yours. My kidney and liver function tests are excellent. Though I do think I get rid of my urine to fast. My tests and ultra sound were good. I do wonder though about underlying infection as I have had prior to starting any treatment elevated cd8's, which now I read are viral related. With my immune dysfunction it makes me wonder. I don't appear to have mast cell issues either. I was wondering do you get the dry eye or sjogren like symptoms? If you do doesn't taking mast cell drugs dry you out even more. I have trouble taking them as they make that even worse. Still so glad to see your progress and treatment plan is working for you.

You have fatigue twice. I actually only get night sweats, otherwise I don't sweat much. Some of these symptoms I only get with near syncopes, which doesn't happen often. Others are situational related, like my hands swell if I get hot. My symptoms can get worse with exertion. My fatigue is usually because I already am having symptoms they kind of go together. Less fatigue, less symptoms, or the other way around hard to say. I have lots of different joint and muscle pain. Also have dry eyes, nose, etc. I'm one of those that get hypertensive on standing. So I get head, neck, and lower body pain when I'm upright. My near syncope/syncopes come on rather sudden without much warning, that is when I get the snow, nausea, ear ringing, pasty/clamy. My bp suddenly is tanking when this happens and I loose my legs, and am down, there usually is some kind of added trigger, motion and heat being some of them.

It has some great features and good articles.

I've tried it as well in the past. The short acting kind, not the newer extended release. That form has had some issues. It was great I'd fall asleep and I'd wake up feeling refreshed with no drug hangover fog in the morning. It really might be of great help for you. If you can get to deep sleep that is where the body repairs itself. BTW how has the nausea been lately?

Rich, it is unfortunate but ivig is not fda approved for sfn yet. It is being used off label and in research trials. I was approved for ivig because my total igg and igm's were low. My neuro did have me on a much higher dose then what is used for cvid, and it did help with the neuropathy some, as we reduced the amount I had some creep back of sfn but much less then before I started ivig. My infection rate has improved. You might want to see if you qualify due to your low immunoglobulins and severe infection rate, if you neuro can't push it through. If you do have a polyneuropathy like cidp then it is approved for that. At http://primaryimmune.org they have a lot of info. You can also qualify if you don't respond to the vaccines, even if your total quant immunos aren't low enough, as this also proves in inadequate immune system. Ruby mentioned those in her posts. It look like she hasn't been online in a while, maybe pm her.

Hey I just saw you posted here too. I read your pm first. Thanks for the pt info, that is what I was hoping to hear that they new how to address it. Maybe you could pm who you are using for pt. Might be to far for me to drive, but they may have an office and a knowledge pt down here in chandler.

AZmusic, Do you like your rheumy? Did that doc diagnosis you with hypermobile? Is the pt taking the hypermobile into account? I'm curious as I'm dealing with some of these issues too. My current rheumy is out of network, so it costs more. If it is a mayo doctor they are actually in network for me. Then last year I did aqua pt to strengthen for the autonomic neuropathy and I actually got worse. I didn't realize at the time I was hypermobile. So, I guess I'm wondering on what they are doing differently if hypermobile is involved. I wouldn't mind knowing the physicians name. You can pm if you don't want to post here. Thanks a bunch!

Hope you enjoy your visit here to arizona. The area around the scottsdale mayo is gorg! If your staying in scottsdale there is lots of window shopping. Close to mayo off north scottsdale road is Kierland commons, it is a very inviting outdoor shopping center, even has a crate and barrel and restaurants. There are two other shopping areas near there scottsdale quarter which I haven't been too and a larger strip type center at frank loyd wright and scottsdale. There is a trader joes in their. In downtown scottsdale is a very large indoor mall called Scottsdale Fashion square. If it's to warm it is a good place to go. Surrounding the mall an south of it is Old Town Scottsdale. You will find lots of arizona flavor type stores including western and indian jewelry. On main is where many of the art galleries are. If you venture a bit out of scottsdale consider the Desert Botanical gardens. They actually have a butterfly house and another art installation right now. It is really pretty, you can look it up on line. Not to far from there around 40th/campbell is my favorite place to eat with my girlfriends. Postinos they have the best bruschetta, a raspberry chicken salad an foccia sandwiches. Oh it is still spring training. The salt river fields is fairly close to mayo. Hope your trip goes well.

I'm so sorry to hear this. Is it for sure? Different kinds of cancer can be an underlying cause for autonomic dysfunction. I was screened for small cell cancers. Let us know how it goes! My friend who is a heart research nurse got it at age 40. Had the mastectomy, chemo and radiation. She is a little over a year post treatment and had a clear pet scan. She was stage 3 and has done very well and will consider reconstruction soon. Outcomes are really improving. Though treatment is tough to go through, it can be done successfully. Take care.

A lunch sounds great. I'll be up in scottsdale during the first week in april. Otherwise I'm down in the chandler area.

I'm surprised they didn't just do this in your doctors office. Did she tell you to just go to a pharmacy for the vaccine? I'd think they'd want better controls then that.

Yes, issie, interesting isn't it. I've always felt better when I was on the right kind of antibiotics. I can't do some do to them making neuropathy worse. They do use profo antibiotics with cvid to keep infections at bay, but you always worry they will stop working, if you take them to much.

Kris, if you don't run a fever even when you know you are sick with a cold or what ever. That is a sign your immune system isn't working. A fever is a good sign your body is trying to fight something off. When you don't get one with infection it means your body ain't doing what it is suppose to. It also makes it hard for anyone to take you seriously when you think your fighting something. I never go by fever now. If I feel like I'm fighting something I go get a cbc test done and if my wbc comes back high I get rocephine antibiotic shots. If I don't treat what ever the infection is my wbc will keep rising. So far the shots have worked, so I'm assuming they are bacterial. I've never treated for virals, but I get a lot of fungal and do treat those as well. The fungals though don't always cause a rise in wbc. Naomi, if you go to primary immune they have all the test you would need to have. Tetanus is still not recommended as a screening test for these conditions as we do get boosted for it, regardless of when. A "total quantitative immunoglobulin" which consistes of igg, iga, and igm and a sub igg panel are first level screening.

Good to hear your getting somewhere. T3 is meaningless, the Ft3 and Ft4's are the ones that show what is actively going on in your blood. I'm going to have to look into the tgab's, my tpo's were elevated, which is hashi. I think the tgs are for graves, but not sure. The thing about the antibody tests is my doc said once you have one positive that is enough to show thyroid autoimmunity. They can go up and down depending on if your having an active attack. She also said usually graves will lead to hashi. You might also want to ask her about a fasting insulin test. Insulin goes wrong before the glucose, so you might have high insulin contributing to the a1c or borderline glucose. My glucose is mostly normal but I had very excessive insulin and pcos. I was also very thin when they found the pcos and then the high insulin. Steriod treatment put my weight on. You can be skinny and still have hyperinsulinemia. I treat with gluemetza to keep my insulin levels down.

Chaos how are you handling your antivirals? What did he decide to put you on?

Hey naomi, sorry your struggling with all this too. A tetanus test isn't the best one to do, because we all get boosters for it, so it can come back normal. Mine came back moderate, but I'd just received the booster a few years before and it had already dropped to low moderate response. I had no response to candida and typhus. Interestingly I get yeast infections a lot. They use the pneumonia one as the exposure is less common.

Hi Kris, It sounds like she is on the right track with you. Everything you said she said to you make sense from my own personal experience. Really go and read at primary immune. Probably cvid or hypogamma. BTW what happens with your temperature when you have an infection? Do you ever run a high fever? So it sounds like your igg was low, do you know what your iga and igm were? They factor into what type of deficiency you might have. I'm pretty sure IGE is associated with allergies and is usually high when you have them. Not sure what it means when they are low. I would think they would be high if you have mast cell issues. That may be why she doesn't think this is a factor in your case. Please understand if you do have an immune defect, it would explain why your ebv is so high, as your immune system is unable to fight it off. You will see that as a part of every immune defect plan it includes treating the underlying defect with replacement, but it also includes treating the infection be it viral, fungal or bacterial. I would think you will need to do both. As for plasmapheresis I have had that as well, and it is really used to treat autoimmunity as it filters out the antibodies. It is also difficult to stay on, has to be done in a hospital and also exposes you to infection in that environment. I don't think it is a common treatment with an immunologist, usually a neuro, rheumy or hemo might use it. I don't know if it has utilized to remove a viral load, maybe, something you could google. With your ebv and low igg I would take her up on the antiviral. Ask chaos what she is taking, she just started this protochol. As far as ivig vs subq, she is right she wouldn't want to send you into a hospital setting due to added exposure to infections,not the ivig itself. However, I get my ivig at home now and before that I got it in an infusion center next to my docs office, not a hospital setting, so lower infection exposure there as well. A lot of docs are liking the subq as it keeps your igg levels good through out the month, with less side effects. With ivig they slowly drop until the next infusion. A lot of patients do like it. I was already on ivig when it was offered to me, since I'm getting it at home, I decided to pass. Please have your husband go to primaryimmune and read about primary immune diseases, he will then better understand what is happening. Lots of times our family just doesn't want to think we are that sick, so it is hard for them to accept something they never heard of before. With treatment many go on to live very normal lives. Which is your ultimate goal right? Let him know that and maybe he will be more accepting. So this immunologist is in the chicago area? We are working on Dinet's physicians list and might want to add some of the doctors you are seeing to the list, if it all goes well. You can pm with the info if you need privacy.

Hi Kris, you can tell your husband that your immunologist is not a quack. She is testing you for a primary immune deficiency. Your total quantitative immunoglobulins have come back low. The vaccine challenge is the second tier testing to determine how damaged your immune system actually is. You are actually very fortunate to have an immuno who even knows how to properly test for this, most are just allergists and immune deficiency isn't even on their radar. If you have this it is very difficult for your body to fight off infections of any type. It depends on which of your immunoglobulins are low. Do you know which ones are low for you? Did she also do a sub igg panel? Primary immune is an excellent website to read about primary immune diseases http://primaryimmune.org. Issie is right the concern with a nonfunctioning immune system is that you will get an infection that your body will not be able to fight off and could cause death. Since the advent of treating with ivig and now the subq form, the death rate has dropped. Issie, has a lot going on an I understand her reasons for not considering immunoglobulin replacement at this time. It is there for her should she ever need it. I myself have CVID or common variable immune deficiency. I have been on ivig for about two years now. I am tolerating it well and have had improvements with my infection rate. As well as some improvement in my autonomic small fiber neuropathy symptoms. Whether you do subq or ivig is a treatment choice and there are pros and cons to both, as well as handful of different brands to choose from. My choice was ivig as I only have to deal with it once a month vs weekly with subq, plus I don't think I could stick myself. I'm also on a higher dose then is used in subq. There are things to consider should you and your doctor decide this is a treatment for you. Let me know if the time comes and I'll help you with that. There are some side effects and things you can do to avoid them. There are also some good support groups for this. It is interesting about the viral load you and chaos are talking about. I did have severe mono and I also have elevated cd8s, which I read recently are usually caused by a viral exposure. I also have several autoimmune diseases. The research that is being done by Dr. Charlotte Cunningham Rundles, is investigating a genetic component as the cause and she does note that in about 20% of her patients there is also autoimmunity found in companion with the cvid. It is more like once you are immune compromised then whole immune system is compromised leading to autoimmunity. Not that the autoimmunity is causing the immune deficiency. It is the other way around. If in fact there is a genetic component trying to improve the immune system without addressing the gene defect may not work. However, the genetic component is only at the research level and there are not currently an treatment options to get to it at that level. So, the only real option right now is to replace what the body can not make. The immunoglobulin products available today are very safe and closely monitored. Chaos, love to know how your tolerating your antiviral meds.

That seems a bit far out to me. I had symptoms as an infant. Unless you consider being born a ptsd event. I'm sure though stress doesn't help an already faulty mechanism. I'd want to see this docs evidence based medicine and have him prove it. Thats not to say that ptsd victims don't also have symptoms of dysautonomia.

Rama, I love your new list of symptoms. Very entertaining! I just noticed them. Don't know though how you guys that have those severe symptoms get through. I don't get dizzy mostly, I feel terrible on standing, but I think dizzy and shaking is so much harder then what I deal with. My heart goes out to you guys with that set of symptoms. Also, didn't think you were advocating the article, but it does have some points to consider. Thanks for bringing it to our attention.

Laying supine on and off through the day is my reset button. It is the best way to bring my bp down when it is up. Works faster then meds. It is also a must after I've made a choice to over due when company comes or travel. I can crash for two to three weeks sometimes after doing those things. It will eventually pass if I rest long enough. I've accepted that this is what will happen and what I will have to do, when I make a choice to do the enjoyable actives of a social life. So I choose when I think something is worth it. Being with friends and family is always worth it to me. Having a laptop on the bed with me has made things easier. Also because I'm not hypotensive on standing I'm still fairly self sufficient and can still drive and do errands. I just have to pace myself. Hard to stand and cook dinner the same day I have to go shopping for food.

Well my input on this is, I never really salt loaded after diagnosis. Just enough to see that it wasn't helping me. I'd always avoided salt, as that was the diet trend I grew up with. I often have low salt osmotality . Having said that I've had signs and symptoms of autoimmune disease and health issues since I was born. My mom had toxemia with me and I had to be feed goat milk. We always had a pretty healthy diet in my family. In spite of all that I still have a messed up immune system which I feel has a genetic basis. I do though now take in a bit of himi pink salt, as we know I have low sodium at times. I am also one of those who's body gets rid of their urine really fast. I should drink more fluids then I do, but when I do I'm living in the bathroom. I agree the study has many things that need to be questioned. Don't most people that eat fast food also drink the soda with high fructose in it. Why isn't that the factor. Or even the fat content.

Interesting Rama, that may explain why Grubb put me on an alpha/beta labetalol. I wasn't able to stay on clonidine, as it created an almost drug addiction like response in my. My body kept requiring more and more of it to keep my bp/hr down. I haven't had that happen at all with labetalol. It is the short acting low dose, that I can increase on a bad day if needed. Some days now with the immune / autoimmune treatments I don't have to take it at all. It depends on the activity/stress levels and female time of the month though.