arizona girl

I would suggest you go to the primaryimmune.org website and read there. If you think you fit they have a physician referral program. You want a doctor that knows and treats these kind of conditions. Hard to say exactly what tests mayo gave you from what you posted. They can check igg for specific disease types and you may have been normal for that one particular disease. The correct test will say "total quantitative immunoglobulins" and will have numbers for igg, iga and igm. I certainly don't think it would hurt to pursue further testing with the right doctor with the amount of infections you are getting. Some one who screens for primary immune diseases. It wouldn't hurt to have the tests done when you are actually fighting an active infection. It appears my tqi's tank with an infection on board. I see you have anemia, pretty sure the antipartietal antibodies are related to that condition. I'm guessing you already have a hematologist managing that? If you do that doctor may be able to pursue the immunoglobulin and elevated wbc issues. I'd make sure they treat that condition first though. If they treat it then they will know how to test for immune issues. IVIG is the primary way to treat most immune deficiencies. Also blood disorders are often found with CVID as well as some other autoimmune diseases. Dr. Charlotte cunningham rundel is the primary researcher in this area if you google her, her research papers are published on the net. BTW do you run fevers with your infections?

Hi, my pots is caused by a number of conditions one of them being a primary immune deficiency called CVID/hypogammaglobulinemia. I was having infections with those kind of elevations in WBC. The test I had that uncovered this was called a total quantitative immunoglobulin. It test your global IGG, IGA, IGM. Other tests are igg sub panel, IGD, IGE and a vaccine challenge test. If you go to primaryimmune.org you can read about the different primary immune diseases and they offer a referral source for doctors in your area. Usually they are immunologist not allergist who treat immune disease and hematologists. I'm being treated by a neurologist who specializes in autoimmune neurological diseases. I do have small fiber neuropathy as well and several autoimmune diseases. By the way my antibiotic of choice which keeps me from having to go to hosptial for iv antibiotics is called a rocephine shot. Last infection took 2 or 3 shots over a week and I normalized. Your lucky you at least know where your infections are we have yet to pin point mine and assume it is my gi track. I am on a treatment that replaces my defective immune system it is called IVIG and I have only had two mild infections since starting it.

Yes, your right rama. I have small fiber damage shown by biopsy, but what caused the damage? The same question as in what is causing the pots symptoms. There are so many conditions that can or could cause these symptoms and damage. With all the autoimmune documentation I have and the fact that I responded well to pheresis which pulls the antibodies out of the blood. I believe mine is being caused by an autoimmune/immune defect. I also have a hyper response with a significant rise in norepi on standing, but I also have mild elevations and supine epi and no measureable dopamine. It will be interesting to see where the research goes on all of this. Grubb's review gave pause for thought on direction. Did you see how well the four patients on adderall did? If you could explain more what you meant below, I'd love it? "Most sympathetic innervation is not small fibre - rather vasomotor, alpha 1 receptors and innervation of the heart, etc." I think I did have the net test done and mine was negative. Rama, by the way I'm happy to report I'm having significant improvement with the addition of synthroid and plaquinel for the related autoimmune diseases, to my ivig routine. My BP/HR have been so normal of late, though I did have one episode of near syncope after a very stressful day and after having a glass of wine. Oh Vey! That has happened in a long time. So, I'm hopeful, again to soon to know if there will be continued improvement. Are you treating the autoimmune ank yet? Good to see you posting again.

Since you mention you have high igg and ige. You might want to investigate the other primary immune diseases. primaryimmune.org is a good place to start, google that with high igg and ige. There are immune disease that present as hyper and not hypo like mine did. My igg was really low and my igm was zero. I was also told I had fibro like you, it turn out to be symptoms of the autoimmune/immune defect. Just looking at the fact you have raynauds, gi issues and factor 5 leden (blood disorder?) they all point to something off with the immune system. Take care and keep on keeping on, you will figure it out!

yes, if you go to dinets my web page there is quite a bit of information about the different kinds of dysautonomia. Dysautonomia syndromes can be an alone diagnosis but more often it is a result of another condition. It can manfest as just pots which is only the rise in heart rate, hyper pots with a rise in heart rate and blood pressure, hypotension drop in blood presseure on standing, and syncope that can result from to low blood pressure or a sudden drop as occurs with us hypers. They can have more then one.

Hi yes, I'm on it on the same baby doses you are being prescribed. It is an alphabeta. It is one of two drugs that Dr. Grubb in toledo, prescribes for his hyper patients who's bp goes up on standing along with the heart rate, we are also swingers though because we drop significantly when lying down. We can also get syncope when we can't maintain the high bp/hr. I tolerate the labetalol well, I am using less and less of it because we are now actually treating the cause of my pots/dysautonomia. They didn't let me rest long enough on my ttt either. It is real easy though to get your own baseline bp/hr. All you need is your own bp monitor that records more then one measurement. First thing in the morning as soon as you wake up before you move take your bp/hr while still lying down. Do that for a week or so every day and you will have your baseline. You can then show that to the doctor. I would agree your test wasn't as well done as some are. The best ones check your bp/hr and catchelomines. The fact that you fainted also means you have a form of syncope or hypotension not just pots. Which is also common with dysautonomias

Hi, I will get back to you on this after my company leaves next week. But you can search my post and read what I've posted on the topic. I've covered a lot of it already. Have to go and I'll be gone the rest of the day.

Hi, issie. Your right my pm box was full, I deleted some. Maybe that is why I haven't gotten some returned pm's. Though one good thing I noticed you can now reply within the same post repeatedly and it is only considered one pm. So that helps. My diagnosis is hypogamma too, it's just a pain to type that and the more current name for it cvid, though there is quibbling over that. FYI, you can have the hypo and hyper states together. A portion of hypo/cviders also have autoimmune diseases. I am an example of that. The doctor is the foremost research on this is Dr. Charlotte cunningham rundle. There are a lot of her studies online if you google them. My rheumy who was from mayo and stanford and trouble getting her mind around that until she did her own research and realized I was right. She actually advised a primary care doc who was following her at my appointment that this could happen. It was interesting to see her reversal. Some times we patients educate the docs. One of my docs describe the immune system like a circle if it's defective in one area another area will eventually be effected. It needs to be looked at as a global system not as a hyper or hypo state. If it ain't working right it aint working right. I'm getting ready for company so I may not be online much this week.

Pam, I'm getting ready for company coming in for the week. Would love to help you with this, but don't have time to do that right now. A lot of what of experienced I've already posted. So search my post for ivig and they will pop up. That will give you a start. IVIG is used for GB, but usually at the time of the attack. We did have one member who developed stiff persons syndrome after her gb attack. Last I heard she was doing pheresis for that, improved and we haven't seen her in a long time. I was just asking about the test for drug metabolizing. Perhaps you could post that for everyone when you get a copy of the labs. Yes, I've had improvements with the ivig, slower then the pheresis, but improvements. I think ivig is easier to do then pheresis and not as frequent. It can eventually be done in the home or subq. But there is a lot of stuff that should be considered before starting and things to do during infusion to keep side effects down. I've already posted most of that stuff. So, please take some time to read it. You can also do your own google search for IVIG. There are also better brands then others. It should be done in a medically monitored facility in the begining in case of reaction. This is not something to rush into and you will have to pass insurance hurdles for approval. It is an expensive treatment, most can't afford without insurance.

Yes, I do believe a skin biopsy and/or qsart test are the gold standard for sfn. My doc now does both as neuropathy can be patchy. I also have had elevated lactate. The protochol for me on that was to do a f/up test to see if it was still elevated. So maybe ask you doc for another one and see if it is still elevated. That may lead to other testing for acidosis or other conditions associated with elevated lactate. However the fact that you do have eds may be the cause most of you pots like symptoms. It can cause stretchy vessels and blood pooling which then cause pots like symptoms. I may have some mild hypermobility, but I don't think that plays into any of my symptoms. My causes are immune defects with autoimmune disease attacking my connective tissues. Even though eds is genetic it also is a connective tissue disease. Have you investigated that route for treatment. Symptoms of eds may be managed differently. We do though have members here that have both eds and sfn. Maybe they can let you know how they manage their eds. I don't remember the name of the test, but there is a test to see if your body can metabolize certain classes of medication. Some people are missing an enzyme or something, so that might be something to look into if you are having problems with meds. Anyone remember the name of that test?

I can't answer when to go to the er. But when I get high swings like that, I get horizontal and go lay down. My bp always drops when I lay down. Pacing around will just make it worse because your body is trying to compensate for the low blood pressure probably by sending out extra norepi which constricts the blood vessels, sending your bp higher. For me nausia happens right as I'm getting ready to faint. I would ask you doc to do a supine then standing catecholomine test to prove that is what's happening. This is a test Dr. Grubb had my cardio do and I went from 400's to 1100's. If I don't get down when I rise that high I am at risk for having a faint/syncope. Your body will cause a faint if you rise to high and that can happen suddenly and you could injure yourself in a fall. I also will sometimes put an ice pack on my stomach or lay on one. It can take anywhere from 5 minutes to an hour for my bp to come down, depends on how far I pushed myself to be up right. If your normal bp 90/60 I'm pretty sure that is considered hypotension. I also see you have anemia, is that under control. Anemia can cause a high heart rate. Any one else want to weigh in on that?

Anoj, autonomic nerves are small fiber nerves. These nerves are found in every organ or body part that controls you autonomic functions, the nerves in the blood vessels are just one location. So any autonomic function can be abnormal if they find sfn. It explains why some of us don't sweat or sweat to much, why some of digestion issues, have sensory pain, have abnormal moisture functions like dry eyes, gi issues, bladder issues. So you see where I'm going with this, even the heart has autonomic nerves in it. If you want to read more about this just google autonomic small fiber neuropathy and there are a lot of research articles out there on the web.

Sugar, There are disease specific igg tests, not to be confused with a total global test. Total quantitative immunoglobulins is the name of the test. It should have an igg, iga and igm level. If you want to read up more on primary immune deficiencies, go to primaryimmune.org. There is a doctor referral program there as well. My first igg test was borderline normal, which means when I had infection on board I was tanking. My 2nd igg test with an infection on board my igg was in the 100 (should be at least 700) range and I had no igm. With IVIG my igg is now high normal and my igm is normal but on the lower end. If you did have that test and it was normal might not have that, but if it was borderline normal you could ask your doc about doing it again. Do you get frequent infections, run a low grade fever, or feel like your fighting something but don't really run a fever. Those are signs of a weak immune system. My wbc was 20,000 with a ruptured colon and my temp was only 100.2. It seems though, if I were you I would pursue the polyneuropathy and try to find a neuro that specializes in it. There is a form of it called cidp. If you google that you can read about it and see if it sounds like your symptoms. There are foundations and you may be able to find a doctor using that route. The testing for this is more invasive then what you've describe and includes biopsy's and spinal taps and other blood work. Well you can read about it if you google it. What is important is that this is one of those illnesses that the sooner they start treating it the less the damage progresses.

I'm sure you already know this but people who have diabetes often develop neuropathy. An inability to control body temperature is a sign of autonomic neuropathy. Also if you are always running a low grade fever it could point to other immune issues. I think there are many drugs out there that can cause the blood sugars to get off. Maybe one of these newer meds your trying bump your sugars off. Are you on oral diabetics or just insulin. High lactate can also be a sign of acidosis which can happen with certain diabetes drugs. I'm on gluemetza, and I watch out for that.

I'm not sure I'm right on this but I'm pretty sure an abnormal emg does mean large fiber neuropathy. Which means you are showing both large and small fiber neuropathy with the autonomic testing. You may have something called polyneuropathy. If you do have that both plasmaphersis and ivig are fda approved for that condition. I would see if you can find a neuro in your area that specialized in autoimmune neuromuscular disease. They will have ms and polyneuropathy patients and they will offer IVIG infusions as treatment. Did your doctor do a total quantitative immunoglobulin and igg sub panel on you? Those test are some of the tests that show primary immune disease and it doesn't have to Gu Barre! I get ivig, it wasn't approved for the small fiber neuropathy, but then we found the immune deficiency and I qualify under that diagnosis, I also had a lot of infections with elevated WBC. The plasmaphersis though was my first treatment and was approved by insurance for the neuropathy. The treatment also was sort of a test. I improved on the pheresis, which in a round about way proved it was autoimmune. I also now developed several autoimmune disease that show up with the immune defect. I agree 2nd opinion, find a patient advocate to help you if you can.

Yes, I have been on it for two years. What are the details of your daughters health again and why is the doctor suggesting it? I've posted a bit about my experience with it, if you want to read more. Do a search on my name and ivig and that should pull up my related posts. I'm happy to share the pros and cons with you and answer any questions I can.

Hey claire, good luck with the testing. I had both kinds of biopsies. SFN biopsy was positive for autonomic neuro and mine is autoimmune. My testing for sjogrens even though I have all the sicca symptoms was not positive. My biopsy showed infilitrates but not high enough to diagnosis sjogrens. While that lip biopsy is the gold standard right now. I discussed this with my doctor who is treating my lichen planus who also said that and the hashimoto thyroid were connected, both autoimmune. Anyway my discussion with him was that according to the research by the time the lip biopsy shows positive you have probably had the disease for a long time. It is usually the last thing to show the disease is active and I did have a positive ssa and ana, and that still wasn't enought for one rhuemy I saw. My patient advocate had me see a different rheumy who is out of mayo and standford and she diagnosed UCTD. I also had another positive autoimmune markers an sm/rnp, as well as a scalp liasion biopsy that pointed to lupus. Not enough to diagnosis any of those specific diseases. But enough to show there is autoimmunity and connective tissue disease. From those findings my rheumy diagnosed Undefined connective tissue disease and I am now on plaquinel, with the option of methotrexate, if that doesn't work. I also have a primary immune defect called CVID, that and these autoimmune diseases tend to cluster together. So you might want to mention UCTD if you don't fit into a specific autoimmune disease. It is a legit diagnostic code that allows treatment. My treatment for the sfn and CVID was first plasmapheresis and when I showed benefit from that it was switched to IVIG. That alone though was not effective enough to treat the lichen or hashimoto or the metabolic/PCOS syndrome. Those treatments now include synthroid, plaquenil, glumetza, steriod suppositories, labetalol, vitamin d, b12 and some pain and muscle relaxers. I've been on the first three mentioned about four months now and I feel like I have stabilized and hopefully am starting to improve. So, wanted to give you some hope that there can be treatments depending on the doc you see. I hope in a year to have even better improvements to report. This is the first time in many years I feel like I have finally turned the corner and am not continuing to slide backwards. For a while i was like how many autoimmune disease can one person have, it was ridiculous!

Well the one and only time I took ativan. I was unable to fill my lungs with air when I inhaled, that then caused me to panic. I think in my case due to the autonomic neuropathy it made it harder for me to inflate my lungs, maybe relaxed them to much. I can however on rare occassions take diazepam/valium for mri tests. I do also get hypoxic during rem sleep, so there may be some relationship to that autonomic issue too.

Oh btw the symptoms you describe are very close to what happened to me, but the I also had extreme itching at the patch site. So knew that was allergic response and I do have problems with different types of tape.

Before you do that I would talk with your doctor first. Especially after what happened to me. Read your pdr and make sure that lowering or stopping dosage won't cause a heart attack. When weaning down from one med like this you probably need to be starting another at low dose to compensate. Which is something you must ask your doctor about. Perhaps she can contact Dr. Grubb and ask him how he manages this in patients like us. I got really sick at first one I went off this without having another bp drug on board. I forget which one now but it may have been atenenol. That one lasted to long in my system and gave me low bp at night. I'm on labetalol very low dose now, it is an alpha/beta so it is suppose to balance the swings a bit better. At least that is what grubb told me, but I haven't been back to toledo for follow-up, to question them on this myself. To be honest treating this is still very young and in the research phase. If you read Grubb's 2011 review of his hyper patients that is obvious and treatment for us hypers I'm sure will be evolving. So be very careful!

Jen I've posted a comment to you at the bottom of this post, please read it. Hey guys good topic. I'm not sure what the right thing is with all vaccines. One of the causes of pots though can be an immune defect where the body is unable to fight off invading organisms. If you have this then you are never to have a live vaccine according to the medical literature. They say most vaccines are dead, but I believe the nasal flu vaccine is live. So head up on that one. I also had a very painful site reaction to my one and only flu shot and will not be getting one again. The shot is suppose to activate your immune system, well if yours doesn't work right it is pointless, as in my case. If you are some one that gets frequent infections or has trouble recovering from them when you get one. There are tests that can be done to see if your immune system is defective. Many times there are also companion autoimmune disease with it like autoimmune small fiber neuropathy, hashimoto, lichen and lupus like diseases. I do get ivig for mine, but I was tested to make sure I was compatible for it before starting it, even then because the first product I had too much sucrose in it I had problems with my metabolic system and had a lot of side effects. That particular brand is called carimune and is the one most commonly associated with kidney problems. They believe it is from the sucrose. It is actually being phased out. Once I was switched to privigen a sucrose free one with a better profile all around I have had no problems and it has been helpful. Jen, I think now that you heard from your allergist/immunologist and he confirmed that with the IGA def, you really should have only been given ivig with in very strick guidelines if at all. I agree with him you are very lucky you survived the reaction. I would think that you do have a medical malpractice claim. If you read the pdr provided on the ivig they gave you it clearly states the risks and they are certainly not 99% or less. I believe that neuro made an error and either did not do the right testing, did not wait for the results of your testing and proceeded with the ivig anyway, or ignored the low iga profile you had. Well I'm not saying you should sue, I do believe a complaint should be made to the hospital and that states medical board, so that a proper investigation is done and that the error does not occur again with another patient. If it happened to you it could happen to another patient. This doctor was rude to you after this from what you said and I believe he knows he made a mistake and could be in hot water for it, so he may have been spinning what he told you to protect himself. There is a time limit on filing these kinds of complaints, so if there is someone to help you do one I would do it sooner rather then later. I know hard with all you've got going on. If you need any help, please let me know. I've gone through this process and fought through it inspite of being sick. So it can be done. I really praying for you and hope, some kind of testing and treatment helps you soon. I hope you are getting cared for by a kidney doctor. Also that IVIG should have been well out of your system by now, so I don't know that your problems are because it is still in your system. However, it may have caused problems that you are still having from the initial injury that the treatment caused.

bump for the newbies!

Linda, I had problems with clonidine patch. After using it a few months I became allergic to the adhesive, it also wasn't lasting a full week and it actually had been prescribed by a pain doctor. This was before I knew I had dysautonomia. So, she took me off the patch and we went to orals. Once on the orals my body started demanding more and more of it to keep my bp under control. I had to go off of it, probably I bit to cold turkey and it was scary, my cardio then put me on different bp med but it was a rough few months. Dr. grubb uses it a lot so I don't know if how it was prescribed caused the problem or what. But, I told him what happened and he put me on labetalol instead. You know I wonder for those of us who have the hyper response either from pooling or nerve damage, if trying to stop the norepi response to vessel constrict to much, keeps the blood from getting to the brain and then the body produces even more norepi to overcome the meds and then requiring more medications as the the bp/hr rises again. The treatment that lowered my bp/hr the most, it went normal, was plasmapheresis and I have had some improvement with the ivig correcting some of the nerve damage with some mild/moderate improvment in my bp/hr. Since mine is autoimmune the pheresis removed the offending antibodies and the nerve damage can repair. With IVIG we are keeping my infection rate down and trying to modulate the immune system from attacking myself. This has been a slower process with hope for continued improvement over time. The thing is stopping either of these treatments means my body goes right back to where it was and the treatments have to be given from weekly to monthly because the body keeps producing the antibodies and these treatments only last in the body for varying time frames. They are however at least trying to address cause, I am grateful for the treatments, better then nothing, but still not a cure or perfect treatments.

Interesting that the empathy lesson has gone both ways now. I'll have to remember that when I get into it with my husband, who I'm financially dependent, and does a great job of providing for us and having to listen to me endlessly at times. I'm sure it gets old for him, heck it gets old for me too! The crazy thing that we get from doctors and others, I do think happens more with women then men. Your husband may end up being able to speak out on this issue for all us women who've had to deal with it for years, now that he has experienced the bias himself. Good things can come out of our difficulties and our experiences can help others. That is why this is such a good support forum. I still think it would be a good idea to let CC know that you both have similar health symptoms, there just may be a connection. Good luck to you and take care!

Oh my goodness that was just from doing a poor mans tilt? Mine symptoms came on during an actual two phase tilt table test. Mine lasted about 30 minutes, 20 min, then nitro and then passout within 10 minutes of that. Make sure when you go to cleveland clinic they do the actual ttt, he will just have to tough it out. It will be worth it in the end to have the medical documentation. That test changed everything for me and open doors to other testing and treatment. I also just posted some articles from grubb and mayo, make sure you ask them if they test all aspects of autonomic function, including the catechcolomines, I'd use the info in those articles to assist you.