arizona girl

I didn't quite fit your questions. I think I was probably born with it, but don't know for sure. Also I do have several other illnesses the most recent diagnosis is a primary immune defeciency, but I also have pcos, high insulin, metabolic syndrome. I however think they are all related to pots symptoms. I found out that there are many known and unknown autoimmune diseases that are associated with primary immune defeciencies. The small fiber damage causing my hyperandregenic pots symptoms is autoimmune. I'm now 53, but I was told had the cvid gone untreated I would have eventually got an infection or lymphoma and could die. So, you could use the question, other major illness that is most likely related.

hey dani, I have the same issue. When I talk or stand my norepi almost triples. I am seeing an autoimmune neurologist here in az. He did a skin biopsy to look for small fiber damage. Small fiber nerves control the autonomic and periferal nerves. The damaged nerves in the blood vessels don't contract when you stand to push the blood up against graviety. Your blood pools, then your body goes into flight/fight mode, shooting off extra norepi/adrenaline, to constrict your blood vessels. So the adrenaline/norepi is sort of a back up system to constrict the blood vessels to get oxygen to the brain. Since we are shooting off extra adrenline already, throw in a little scare and we are over the top. I'm still trying to work out how best to treat it. My neuro says my body is attacking my small fiber nerves, so it is autoimmune. I also have low immunoglobulins called common variable immune defeciency CVID or hypogammaglobulinemia. When you have CVID there is usually some sort of autoimmune disease associated with it. Mine appears to be autoimmune neuropathy of the small fiber nerves. But there can be celiac, arthritis, diabetes, or any other autoimmune illness. If you have a lot of respiratory, gi or female infections having quantitative immunogloblins checked is a good idea. A skin biopsy can rule out small fiber damage. Right now because I have the two issues I am getting immune replacement with IVIG. I've noticed some improvement, but I also was having reactions to the ivig product carimune they just switched me to another ivig product called privigen and that seems to have solved that problem. My heart rate is much better, but I'm still having issues with standing BP being high. Trying to treat that has been harder, though it is lower then my high highs. I'll take a bp med when I go high, it's almost always still up in animated conversation. Hope this makes sense to you now and sort of answers your question about what is happening. Treating though is still a work in progress, it may take 6 months to a year of IVIG before I know if we are correcting the nerve damage. If that corrects then hopefully the Pots symptoms will go away too!

Well the question is she low most of the time, is telling. The salt loading best treats orthostatic hypotension and sycnope caused by that. My feeling is that if she is swinging there is probably small fiber damage. Salt loading doesn't really help with that. But, this has been the first line treatment. So they tend to go for it first, it is easy and if it works well they can feel good they solved the problem. I wouldn't accept this and would push for more testing. What type of doc is telling you to salt load with hypertension? Of course we all need to be hydrated, but many of us pee it right out, and it never increases our blood volume, which is the theory behind salt/fluids. You know if she followed the protochol right, if she did, then you already know her response and whether continuing will help or not. Always, trust your own judgement first, most docs don't get this right or understand it. That is why I said to use the resources here and read up, educated yourself and her. If she is already on medicaid, I'd imagine she would qualify for ssi, if she unable to work. I don't know how old she is. Go for it if you can get it. I made the mistake of waiting and thinking I was going to get better, by the time I realized, I would qualify, it was too late for me to file. She is a dependent right? So that would be different path then someone who already had work credits. Be prepared for a challenge and being denied multiple times, if you stick with it she will probably qualify. Do what one of the other members did. He got a heart monitor and BP Cuff and video taped the postural changes in heart rate and BP. It is hard to deny it when you see it. He finally qualified. Search the forum on this topic there is a lot of info.

I know this is overwhelming, scary and it seems like endless waiting to find out. I had similar response to my tilt table not as high, but high enough and then I dropped like a rock and passed out. So these tests proved the dysautonomia, as they are for your daughter. They do not however address cause. I did the salt thing, while it helps some, those of us that go up and down, not so much. It is worth trying. Many conditions can cause this to happen. Some are life threatening and stopping with salt/floinef is not enough. Trying to treat symptoms is fine as a start, but most of us need to test further and start ruling out cause. I say this because treating cause will get this under better control then treating symptoms. On dinet's main page there are list of causes and mechanisms. Read through them and see if any fit your daughter. Then test for those conditions. Rule as many of them in or out as possible. Ask these questions: Is she hypermobile, does she get a lot of colds, infections or GI problems. These symptoms could mean EDS or small fiber neuropathy and or a primary immune deficiency. We first found through skin biopsy done by a neuro musclar neurologist that my small fiber autonomic nerves were damaged. Thus the swings in BP/HR. While treating that and probably because we were monitoring me more closely we found out that I also had an immune deficiency. I am now getting the right treatment. While it isn't perfect things are changing for the better I think. There are a lot of autoimmune conditions with these symptoms. Rheumy's are not the only ones who treat autoimmune, so do hematologist neuromuscular neurologist. Cardiologist are useful to rule out heart defects, but if the heart and other cardiovascular issues are intact, they will stop there and only treat symptoms. I've also found that each of the research hospitals all have their different research point of view and they can tend to try to make you fit their line of thought or dismiss you if you don't fit. The good news is that autonomic testing now opens the door, for the next step. I wish you luck and quicker diagnostics. Once TTT was positive, it took less then a year to finally find cause and get to treatment. I was however not properly diagnosed for 25 years or maybe even my whole life, because I was probably born with this. If you can figure this out while she is still young, I have much hope for her future.

Oh I forgot, my neuro is sending me out to see an infectious disease doctor. I didn't realize that they looked at viruses. That is so interesting that is the kind of conference your was at. My thoughts have been too, that maybe I should have been given a combo punch with the antivirals and antibiotics. I do know though that I haven't been given the right course of antibioitics, like your saying with the six months. I remember being on doxycyline for a month once and feeling better on it. Since your doc rocks have you thought about sharing her name with the forum, there might be other members that live in your area or are willing to travel to see someone like her!

Hi, sandy! It's not that you need anything else wrong with you, it's more like finding the source of the cause of everything. Yes I too have a positive HHV6, cytomyegalo, tb skin, and had mono. I agree with her these are probably a factor. You have had a lot of the same type of problems that I have had. There is one more thing since she is open, I would have her look at, because it fits with the viral load. Have her look at all your immunoglobulins. Test the quantitative immunos, the sub IGG panel and if you can get her to, the ig d, e, f. She is looking for a primary immune defeciency. I have one called hypogammaglobluinemia or CVID, common variable immune deficiency. I have now been on several rounds of antibiotics and and am getting ivig immuno replacement. I'm still in the recovery phase and dealing with side effects, but I know we are on the right track now. I too though have wondered if antiviral treatment should be added, or if the rebuilding of my immune system, will now allow my body the abililty to fight these on it's own. There is a lot of info out there on primary immune conditions, you can read through them and see if one fits you. They are also finding that people with chronic fatigue are immune comprimised. So it all seems to be starting to fit together, at least in my mind. Let me know if you want anymore resources on this.

Hey, Issie, glad to see you got in with Levine and things are moving along. I can already tell you are benefiting from their new autonomic testing lab they have put in place this year. When I went all they did was labs and the biopsy. So I can see that he has added all those other tests. Interesting that he has added a poor man's tilt. I had asked if he was going to be doing the TTT's now, when he told me about the new lab and he said they were adding the QSART, but now looks like he as at least adding in the poor man's. What where your IGG numbers? Mine where low too. Which how I insurance approved me for the IVIG. Even though I had the small fiber neuropathy, insurance denied IVIG for that. My low immuno's showed I had Common Variable Immune Defciency (CVID)and one of the hall marks of it, is that it is often associated with autoimmune conditions. While small fiber can be idiopathic, when it is found along side CVID it is usually autoimmune based. They just haven't been able to identify the autoantibody causing it yet. There are a lot of other autoimmune condititons associated with CVID. Note to that when I was on pheresis with the small fiber, my bp/hr normalized. Which showed it was autoimmune. My BP/HR are acting up again on the IVIG. My immuno's have normalized, but the IVIG product I've been on has been causing known side effects and is effecting my BP/HR. We are switching my IVIG product to privigen and hope that will stop the side effects. You will most likely qualify for IVIG, due to the low immuno's. CVID is usually treated by an immunologist who will do further testing like an IGG sub panel and vaccine challenge testing. These should be done before starting IVIG. I trust Dr. Levine but he is not an immunologist and he didn't do the tests I just mentioned on me. Then again he may not have wanted to because if those tests come back normal, it might disqualify you from getting IVIG and he knew that is how he wanted to treat me. I also agree that the IVIG is the best course for me. With autoimmune SFN, it will take longer for IVIG to correct that. Good luck with your results, hope they help get you into a good treatment program.

You mentioned the scarring EDS is also associated with a type of scarring called "cigarette paper" scarring. If you google that term and selected images. You will see many pictures of what they look like. You then can compare them to your childs. Also you do know about Dinet's afflicated DYNAKIDS web sight. You can check it out too!

I had very similar labs with my recent bout of anemia. I would suggest you see a hematologist. Your blood work shows anemia and your elevated wbc and nitrates show infection. Though your hemo and hema are staying steady over a 4 day period in spite of being low. It would be interesting to see your numbers now that your had a visually evident bleed. If you bleed enough from a hemroid it can cause anemia. Iron infusions and antibiotics corrected my labs, I also stopped taking a med that may have contributed to it. Hypermobility is often associated with gi problems. Are you seeing a specialist for that. Also with a portacath can't you be prone to infection? What your doctor say?

I had very similar labs with my recent bout of anemia. I would suggest you see a hematologist. Your blood work shows anemia and your elevated wbc and nitrates show infection. Though your hemo and hema are staying steady over a 4 day period in spite of being low. It would be interesting to see your numbers now that your had a visually evident bleed. If you bleed enough from a hemroid it can cause anemia. Iron infusions and antibiotics corrected my labs, I also stopped taking a med that may have contributed to it. Hypermobility is often associated with gi problems. Are you seeing a specialist for that. Also with a portacath can't you be prone to infection? What your doctor say?

Go to the ER!!! Sandy, bright red blood in the stool and the labs you are stating along with the pain, could very well be a rupture. I know because this happened to me. Did they look at your small bowel? Colonoscopy is only the colon and endoscopy is only the upper GI, neither of these test look at the small bowel. As long as you know the blood isn't from a hemroid or a tear around the anus from straining, bright red blood is serious. If you have a rupute you can get pertinitis and die from the infections. I too was told my colon was healthy and then I ruptured within a year, 9 months after a car accident that may have triggered the intitial infection. Your labs indicated you are bleeding some where. Have they checked your iron and ferritin? You may have iron deficient anemia, which is almost always caused by a bleed somewhere. I've been following your post and haven't posted recently because I haven't had the time. I think you show a lot of symptoms and signs that I have. I finally was diagnosed with a primary immune deficiency called CVID, it almost always has autoimmune diseases associated with it. My skin biopsy showed autoimmune autonomic neuropathy due to damage of the small fiber nerves. The thing with CVID is that if you have a defective immune system your body can't mount the normal defenses, so you have no warning signs other then pain and maybe blood, inspite of infection you won't run a fever. If I can help you out let me know.

Hi, you are right to trust your instincts and use discernment with the different doctors opinions. Finding a doctor to treat rare conditions is difficult and ER docs can have their own agenda's. Most of us here have had to go thru many doctors before finding ones that can actually help us. There are a couple of things you can do and consider while trying to find the right doctor. There is a sister web page called dynakids and a few other mom's on here that have good peds doctors. I think a lot like John hopkins for peds. What part of the country are you in and what was the name of the rare disease your doctor diagnosed? It is very important if you haven't already that you get copies of all labs and doctors notes and get help understanding what they say. Then you decide if you thing they are accurrate, you know your child. When you do decide who is the next doctor you will see don't bring any notes you don't agree with, labs are okay to bring, they are just facts, and don't have an opinion. You want fresh eyes not ones tainted by someones else's opinion. You said you were treating with an allergist and mentioned the recurrent infections and colds. Has you child's quantitative immunoglobulins been checked? There are primary immune illnesses that lead to recurrent infections and present with symptoms of dysautonomia. An immunologist not just an allergist and a neurologist who deals with neuromuscular autoimmune disease are the ones that know how to treat these type of conditions. The migraines can also be a symptom of dysautonomia. You can do a poor man's tilt table test at home with a blood pressure machine, make sure you have a childs cuff on it if she is still small. Her BP/HR should be measured as soon as she wakes up and is still flat not moving around yet. Then it should be taken standing still at one, five and ten minutes. Also take it when she has symptoms when she is upright. Once you sit or lay down the bp/hr usually drop into the normal range, but there can even be dysfunction lying down. If there are any changes more the 20 points on any of the readings then there is dysfunciton there. Write down the day/time and position and keep track of it. Blood pooling in the lower part of the body can cause migraines, but so can many other things. Guess still need a bit more info from you to give better direction to go in. RateMd's is also a good site for reviewing doctors, depends on where you live. Don't give up till you know in your heart that your on the right track.

Hi, Julie, I would hate for others here to rule out a treatment that could very well help them, based on this post! I don't know how good a study that is 20 years old and only done on 30 patients is! Also it was only looking at patients who had low sub igg levels, not Total Quantitative. From what I understand there are newer trials being done with CFS patients and ivig, and not necessairly just those with low igg. IVIG products have come a long way in 20 years and are much better quality products now then they were then. They also know how to treat side effects better too! Also these were chronic fatigue patients classifed that way 20 years ago and you know the way they look at CFS now has greatly evolved since then. So does this mean your Quantitative immunoglobulins are normal? If they are normal and you only are low in the sub igg panel, the use of IVIG is not standard treatment yet for that presentation of it. I know how scared you are to consider this a treatment for you, are you looking for reasons to not have to try it should your doctor tell you to consider it, as he has suggested before? Truly I don't know yet if my IVIG treatments are going to make a difference yet, but I will be honest about how it turns out which ever way it goes. Also for me IVIG is not an end all for my symptoms, I still will need to treat any associated companion illnesses as per their protochol. You still can get infections even with IVIG. IVIG will just help me with frequency and fighting things off better. I will still need diflucan for yeast and antibiotics for infection, and what ever they decide is best to treat the autoimmunity. There are a lot of illnesses that now, that they are finding IVIG is useful for, but many are still at the research stage with a big to be determined question mark on them. My cardio said that treating of all these immune type illnesses is comparitively still in it's infancy. We have so much to still learn. We must not rule out a potentintially useful therapy based on one small 20 year old study. As always treatment decsions are between each of us and our doctors. Julie, I hope that you continue to make progress with your doctor and your treatment choices. If I could wave my magic wand I would make all of use better. Getting better is what we all hope for, I think!

Hi, Julie, First, how did your labs go today? That's interesting about the doxy. I had to take that for a month after one of my crowns went bad. I remembered noticing I felt better on it. I ask for it for the GI stuff and they said it wasn't broad enough for the gut. The thing is cipro and levequin flare up the neuropathy and cause severe body pain. They gave me amoxy last time and then that new GI one xifaxin. My gut is still off in the upper area, maybe I have yeast now. I don't get hot flashes during the day either, but the nite sweats do seem to happen between ovulations and menstruation, but then I get yeast infections too during that time. Maybe just having my cycle is enough to further suppress my immune system. Thing is antibiotics aggravate yeast, so vicious cycle probably going on here. It sounds like you have a few doctors that seem to be on the right track, very fortunate for you. When you read about CVID you will see that there is a very strong association with autoimmune disease and lymphoma. That is how I first presented 20+ years ago, positive ANA and now we know from skin biopsy that I have autoimmune small fiber autonomic neuropathy. The wild swings in BP/HR got me the tilt table that proved that, then the catchcolamine test showed that the norepinephrine almost tripled standing and my supine eppy was elevated as well. When those are elevated it also causes problems with insulin and glucose regulation, which I also have. As the small fiber neuropathy is one of the causes of pots and thus under the umbrella of dysautonomia I'd indeed say they are linked. My neuro said that they were as well. There are quite a few different autoimmune conditions connected to CVID in studies, including arthritis, diabetes, anemias, lupus. I have one more month of infusions then the week before the 4th I'm to check them again. IVIG though doesn't stay in your body more then 3-4 wks, so it will depend if we wake the immune system and it goes back to work then I would taper I think, but if that doesn't happen I will probably have to have replacement ivig for the rest of my life. Most people with CVID are on it for life, but there are always exceptions and the length in between can sometimes be lengthened.. I'm so glad I could help, but the truth is though I had never heard of this condition until a few months ago. I'm just good at researching. You, actually have been buzzing around the topic for awhile now, just not landing on the right bit to bring it to light for yourself. Though you know what they say about fresh eyes looking at something. My eyes couldn't have been fresher, as I'd never heard of it before. You've been helping out a lot of forum members for a long time with what you do know and you are so nice about it. Please ask any question you like, I'll find out if I can. I happy I get to be the guinea pig for the forum, maybe it will help some one else. Very interesting.... I am so thankful to you, AZ- really you have taught me so much. You're right, I rarely have a fever even when I'm deathly ill. When I had pneumonia, I just took to my bed, feeling awful, with lymph glands incredibly sore. I could barely drive Mack to school. That's all I did & sleep for a week. NO FEVER!!! I eventually ended up at urgent care when I felt well enough to get there (hubby out of town, of course) and got an IV and steroid shot. All the doc DXed me w/was a sinus infection. I later learned it was pneumonia when my antibodies were checked. I almost never get a fever. Your link explains alot. I also have to constantly treat a smoldering sinus infection with Wilson's Solution (antibiotics and saline) via a neti pot AND I take a daily 50 mg doxycycline because it makes me feel better. I started as a treatment for rosecea. When I stop, I feel worse- achey, inflamed, fatigued. When I start back, I feel better. Dr. Rowe is treating his patients with antibiotic therapy w/o knowing exactly how it works. You may have explained it for me- keeps the buggers at bay I think the night sweats are a symptom beyond menopause as I don't have hot flashes during the day, certainly not as many as I have at night. Night sweats are common in HIV, with smoldering infections- could that be us (sans HIV, of course.) Have any docs definitively linked your CVID to dysautonomia? Is there a medical study or piece of literature that makes that connection? It makes perfect sense, just wondering of the eggheads have connected the dots Have they checked your numbers since your treatments? I'm dying to know if it's helped. Thanks again, AZ. You have taught me so much & I'm sure I'll have more questions for you soon Thanks- Julie

Hi Julie, I was thinking about you again today to when I re-read your thread on lymes. I had meant to ask how that was going and there was the answer in your new post today. I'm glad that you all got thru it okay. Here's something else for you to think about. When you posted about the lymes symptoms/reaction you and your son had, you said he got really ill and yours was more moderate with just flew like symptoms, right? Well when doing research on hypogamm/cvid I found out that when you are immune deficient your body is unable to mount a normal attack on the bacteria or virus. Fevers are designed to kill the bacteria. When you don't have a proper immune system you can't mount a proper fever. I could never understand why I would feel so terrible but I would only have these wimpy, transient, low grade fevers. Even when my colon ruptured and my wbc was in 20,000-30,000 range the highest my fever got was 100.3. When you don't have a fever doctors don't think your sick with a bug. Didn't you say your son's Q. immunoglobulins were normal and your's weren't, may explain the different reaction between the two of you. Here's a little quote I pulled from one of the research sites: "Address colds and minor sinus infections promptly and don't rule out sinus or respiratory infection simply by the lack of fever. Many immune deficiency patients lack antibodies to produce standard symptoms in common illness. Consult you physician for medications that reduce mucus and minimize allergies and discuss antibiotic therapy regularly." Read more: How to Live Better With Immune Deficiency | eHow.com http://www.ehow.com/how_2197065_live-better-immune-deficiency.html#ixzz0yTxh0pxR I can't wait to go back into my primary care and let them know that bit of info. My neuro is great, but my pcp is still getting to know me and my long list of issues. Well, I'm so glad this was timely for you. It sounds like your doc knows what he's doing. Running the sub igg panel and the vaccine challenge will tell you a bit more and maybe point you to which of the primary immune disorders you have. Remember too you just had and infection and antibiotics. You might have been even lower during the infection phase. Do get your a copy of that test, because depending on what's going on with your IGA and IGM, if they are off either hyper or none, treatment direction changes a bit or there is chance for a reaction with ivig products that have iga in them. So, once you know your results go back and figure out which one you fit in and read the treatment protochol for that one. The other thing that causes a reaction is if the infusion rate is too high. If you do ivig don't let them run the infusion rate higher then 100 on the first round. I'm glad you feel better about the IVIG, a good infusion center is equipped to handle reactions, I had one the first round and the whole thing was over in 30 minutes, though I did have on going headaches, and of course my symptoms haven't resolved yet, but I was pretty dam low and that doesn't correct with 2 rounds of treatment. Well I do get the nite sweats, but are they a sign of menopause or illness? I have had nite sweats on and off for years, my sinuses are so dry that they cause sinus pressure that is relieved if I can sneeze, and yes I always am pooped. I seem to be more susceptible to GI and Girl infections. So your symptoms sound more classic then mine from what I've read so far. Thank you to Julie, you are a great help to all of us here on the fourm. I'm glad we are all here to help each other.

Sorry haven't received any pm's. I can't even find the link to them on this new forum.

Oh, Jana, I agree with you, methadone????. I think maybe before you do take that and have a biopsy that leaves permanent damage, you should get a second opinion. Methadone is treating a symptom not a cause. I really think phoenix neuro is a head of the field in their treatment protochols and they know SFN. They also specialize in neuromuscular neuropathy, Barrow really specialize with the head, which is why I didn't go to them. Phoenix neuro trys to treat cause. BTW. If you want to know what they are thinking. All you have to do is go to the hospitals medical records department and get your medical records. That would include your tests and the doctor/hospital notes. You don't even have to let the doctor know you are getting them. They shouldn't be protecting you, your an adult an have a right to know exactly why they want to do what they are doing and what they are looking for. The truth is they not even know for sure what they are looking for. You will probably get in faster with Dr. Levine if you have your main Dr. call Good luck honey!

Hi, actually no you don't need all three any combination of two diagnosis hypogamma/cvid. My iga is low normal, but my igg and igm below normal. Most have the low igg/iga combo, the low igm is less common. I guess the thing with the infusions is that they only last 3-4 weeks for cvid, then your number drop off again. The hope is that ivig will boost my system to doing it itself, that often doesn't happen though. Then you have to keep replacing them with monthly ivig. It can be longer depending on the diagnosis. Your right they do some other testing with vaccines to see if you produce antibodies to the vaccine. If you don't respond it is confirmed. Mine was so low and with an infection on board and the autoimmune sfn, insurance approved it, without the vaccine testing. I understand you don't want to add to your list, they do just seem to get longer don't they, but you also have to consider this might be one of the primary causes of the other things, and with treatment everything might improve. The fact that your doctor has suggested it for you says a lot. That though is a personal choice only you can decide, and I respect that. I think intuitively we all know whats best for our uniques issues. Thank you! I sure hope in a few months I can come back and say it's working, it's working!!!! I too hope things get better for you and son too!

Actually hypogammaglobulinemia is my official diagnosis, CVID is just another name for it, they are bascially the same thing. They are under the category of primary immune deficiency and there are about 12 different types under that umbrella, some that only males get, maybe your son?. IDF and ipopi are some of the immune deficiency web sites. Really helpful! Seems I may have given you some new reading up to do. IVIG actually is being used for a lot of conditions that cause dysautonomia symptoms, not dysautonomia itself. It is being used off label for sfn. It is used with a lot of neuromuscular neuropathy, hematology illnesses, ms, some cancers. There are some ivig forums and a lot of the cvid (easier to say and type) patients do very well. If your doc prescribes the ivig it will be for hypogamma not the mcad. I don't think that is on the fda approved list. Yes, I was nervous about getting it at first, but I realized I didn't have much choice after my igg went into the basement. I really want to get better or at least stabalize. Really now that I've had it, ivig isn't that scary at all, and after a few treatments the side effects don't come any more. I infuse with other people and it has been nice talking to them. They all tell me it gets easier and that it helps them from getting worse. Yes, I have the next one scheduled and the week before the 4th one we recheck the labs and see where my numbers are at, then we decide the frequency from there. It may be monthly, it depends on if my body starts to make them again on it's own, with the boost from ivig. If it's life long, so be it, I can deal with that, if it shorter frequency thats good too. Thanks for your though and insight, it nice to have it!

Thanks issie! Mack's mom my igg was 152, iga 94, igm no number less then 25. So very bottom of the barrel. My igg last year was 701, iga 265, igm 58. So you can see I had a huge drop to the basement. The worst of the treatment the first month was a reaction, but they treat you with benadryl and decadron if that happens, I had a lot of headaches that month, made it hard to type. Last week I had my second round without decadron did really good the first day and the next, drove myself on wednesday, so they speeded me up and I also did well, that nite though woke up with bad headache took some meds and that was the worst of it. There were a few moments the first round when almost felt normal, but I had an infection brewing. This month I haven't felt that yet and my HR/BP are swinging again which always makes me tired. I will take labetalol on bad days, but not every day until we see some changes. It will take a least 3 months and longer for the SFN, mine are autonomic symptoms, I don't get much of the burning. I will be honest and let everyone here know if I improve or don't as it happens. Just too soon yet. I did read up on your mcad, but I wasn't having most of those symptoms, but you can have CVID and present as you do, from what I've read so far. Yah, once again I don't present with the most common symptoms, but the subgroup. But I do fit into the subgroup very well. It is interesting how you mention smouldering infection. My cardio when I told her I had cvid, goes, Oh my gosh I'm learning new things because of you. I was like oh you haven't heard of it, she said yes in nursing school, but I've never had a patient. She had been telling me we sort of know what's going on with you, but it's all not there yet. As soon as I told her about the CVID, her eyes got big and she said all the pieces of there now this all makes sense now. She told me not to worry about the elevated cholesterol and platlets and sugar/insulin problems she said all of those can be a reactionary response to inflammation and infection. "So, lets see what these treatments do and we'll look at your labs again in a few months." I mean think about it if you immuglobulins are low and you have a smouldering infection your body is always in fight mode, no wonder we are tired and feel like crap. Then there is the auotimmune component which presents in many different ways, my case it's sfn causing dysautonomia, your case mcad. Oh and yes I had a pretty high ANA for years when first diagnosised 20 years ago, it's normal now, but it can also a marker for CVID and still a marker for me because it was a sign there was autoimmune illness present, but it doesn't always have to be there. So, if if we are always in fight mode and IVIG will help us fight of the infections and keep infection rates lower, it sure is worth a shot. It may not cure everything, but if it takes some of the stress off, that can only be good. The infusion, when done properly at an experienced infusion center are nothing to fear. Who administrates it and there protochols are important, rate of infusion should start very slow to avoid reaction. I hope this helps you and your son. The other name for cvid is hypogammaglobulinemia, ton of info under both google searches. Ivig was created to treat this condition, but is now being used for many autoimmune illnesses.

Thanks for your thoughts, I was wondering about ericka too, I think she was also getting ivig. Yes the main reason I post, is so that it may help someone else. My path has been long and argeous. If something I tell here makes it easier for someone else, all the better. Actually the Quantitative immunoglobulin checks total igg, iga and igm counts. There are other specific immuglobulin test that are associated with certain other illnesses, like your test. There is also a sub igg panel and other labs for Igd and Ige. My doc didn't do the sub igg, and now that I'm on the ivig we wouldn't know if they were mine or from the infusion. Wish I'd had those done before treatment. Not that it would have changed treatment, and would have just given a better idea where I'm vulnerable.

As some of you know I was diagnosed with autoimmune Small fiber autonomic neuropathy. I was receiving plasmapheresis from march to may. It stablized my wild BP/HR swings. During the treatments though I developed anemia and elevated wbc. Further blood work was done including a quantitative immunoglobulin. I had extemely low igg and no igm. Though I wasn't tested for it, you can have abnormal B and T cell antibodies and a normal or abnormal immunogolbulin test. When these are abnormal they are associated with auto immune auto antibodies that cause autoimmune illness. These finding along with the new infection on board added to my diagnosis and finally led to the main source of why I'm ill. I have been diagnosed with Common variable Immune Deficiency (CVID). The interesting thing about it, is, that more often then not it has an companion autoimmune disease along with it. Thus this explains the autoimmune SFN. I can look back now on my health history and see that it explains a lot. I had digestive issues as an infant, my baby teeth came in decayed, I had chronic gum infections, all childhood diseases, chronic sore throats and swollen glands (until tonsil were removed at 21), I have repeated vaginal infections with yeast and bac vag and I now realized I have had the small intestine bacterail overgrowth messing with my gi system. I also had mono and have positive titers for hv66, cytamegalo and ppd, though no active disease. More people with it though get bad sinus and respiratory infections. Antibiotics just for the GI tract finally lowered my white blood count and Iron infusion corrected the anemia. When your body can't mount an adequate defense you also don't tend to run the high fevers that help your body fight off infection. Which explains my rather wimpy transient low grade fevers. Also, nearly eight percent developed non-Hodgkins lymphoma (NHL); another one to two percent had Hodgkins lymphoma; and other individuals had 24 different cancers, including breast cancer, prostate cancer, squamous cell carcinoma, melanoma, and basal cell carcinoma. The treatment is IVIG, antibiotics and treatments associated with any autoimmune or secondary condition. This condition is something that wasn't even on my radar and I don't know that I've seen it posted here. I do know that I've read a lot of post with some of you saying that your dealing with some of the symptoms I've noted here today. Many of us with SFN don't know what caused it, and the resulting dysautonomia symptoms. It is a simple blood test. My first test last year was barely normal, so it wasn't caught, but I had just been on antibiotics prior to the test, so they were starting build up again. My guess is that everytime I started getting sick they tanked. It all sort of makes sense now. I have made it through 2 months of IVIG infusions. Some headaches the week of the infusions, but acceptable, for what I need the IVIG for. When I stopped the pharesis the BP/HR started swinging again that has not yet corrected. The doctor said it would take 3 months of infusions (2 days, once a month) to build up the igg. It takes 6 months for nerves to repair, so it might take that long before I see any autonomic changes. But, I have a shot a stabalizing and that is hopeful isn't it?

Hi, potsgirl, glad your visit went well at barrow. I haven't been up to typing on the forum, and I saw that you had asked me who I was seeing in the post from dani, sorry for not getting back sooner. My doctor is Dr. Levine at phoenix neurology, he's works with good sam. I think I've given you that info before. He tested me for amyloid too! They also do all the skin and nerve biopsies and diagnostics in house, they don't have to send them out. They are known for doing an impeccable job with these. If they already know you have sfn then why are they doing a nerve biopsy too? That can leave permanant nerve damage and pain at the site. Also what treatment are they offering you should this turn out to be true? What else are they looking for? IVIG might be a therapy for the amyloid and the SFN. Depends on how your insurance works if they will approve it. UHC denied as experimental for SFN, but I was approved when we discovered very low levels of Quantitative immunoglobulins. I think I'll do a general post on that.

Dani, it sounds like symptoms of neuropathy. Why don't you go see the neurologist in phoenix, that is treating me. I just had a bout with anemia too. Turns out I'm missing almost all of my Igg and Igm immungloblins that help your body fight off things. It's called hypogammaglobulinemia or CVID common variable immune deficiency, and guess what else autoimmune conditions almost always accompany it. So, that explains the autoimmune autonomic small fiber neuorpathy. It is also treatable, have my second round of treatment on monday and wednesday. I haven't posted about it yet, because, I wanted to wait until the treatment is at full effect at the 3 month mark. He does a real good job of screening for underlying cause. PM me if you want more info. Also my cardio is up on dysautonomia, because of me and she is in mesa, if you don't get anywhere with your new cardio. How are you managing all this with a new baby on board? Hope your loving your special little blessing and the baby is giving you strength to keep on fighting. I'm here if you need me.

Hi Nikki, You are so not alone in hearing it's in your head thing. Please honor your instincts with this doctor, they will serve you better then the doctor. How could anything be wrong with a pretty, young healthy looking person! You'd think doctors would know by now, that what someone looks like doesn't mean they aren't sick. Most illness you can't see on the outside until the ends stages. Stick to your guns, you know something is not right. I have found that when doctors can't figure out whats wrong with you, rather then admit they don't know, they spare their ego and decide your crazy. Read Erika in orlando's posts, this happened to her in the extreme, she finally ended up at Mayo, because she didn't give up, and they found she has a very rare illness called stiff person's syndrome. So don't give up hope, keep going till you find a doctor that hears and sees you. So as far as how to handle this doctor for now, at least he admitted he didn't know. All neurologists are not created equal. The kind of neurologist that is best for those of us with dysautonomia are neuromuscular neurologist who deal with autoimmune neuropathies, most neuro's don't speacialize in this. So ask his office what type of neuro he is. You might as well get what you can out of him, for now. It is good he has ordered the MRI, probably for your head, right. He's probably looking for MS or other lesions. When I have tests and labs done I always make sure that copies of the report go to all the doctors I have on my team. So, just do that and you won't have to worry about getting results from him if you don't want to go back. If you can get a new referral to a neuro who specializes in neuromuscular conditions like cidp, or small fiber neuropathy, these are just a few of the autoimmune neuropathies. My neuro has a lot of info on his web page, read up and understand the medical terms and get comfortable with using them. My neuro is with Phoenix neurological associates in arizona. You may want to give them a call and see if they know someone in your area that could help you. I don't know what all your symptoms are, or what tests you have already had done, so hard to advise what direction you should take. With inflamation of the eye nerves though I think you should be seeing a neuro opthalmologist (md, eye doc). Oh when you get asked again if you faint tell them that you get presyncope and that if you remained on your feet you would faint, but you sit down before you do. As far as what to say when they act like it is in your head. Look them in the eye and say, I'm sorry are you saying you think I have anxiety or psychological problems, if they say yes or maybe, assure them that they are wrong about that and you don't have those kind of problems, then say do you think you can you help me figure out what is really wrong? If they still want to blame anxiety, then you must drop them as a doctor, they will never be able to help you. Good luck with your MRI tommorrow!