RockiesGirl Posted April 23, 2011 Report Posted April 23, 2011 Does anyone else periodically run a low grade temp? Had one last night again. 100.3. No reason that I can think of. No cough, sore throat, no sinus stuff etc. I once had a low grade fever for almost 7mos. It never was over 101.8. That was 4 years ago and the docs couldn't figure it out. Sure makes me feel like poo.But usually my body temp is low? Just wondering if anyone else experiences this? Quote
tinkerbella Posted April 23, 2011 Report Posted April 23, 2011 I went through a year of 100 degrees and saw infectious disease doc and got the dx of chronic fatigue syndrome. Now I'm 97 degrees, if I have a normal temp I'm getting sick been running 102.8 and they can't find out what is wrong other than some virus. Could have been lasting effects of the H1N1, as it doesn't always positive on the swab test. Mine tends to go up late afternoon/evening. I'm always freezing then I get real hot. I wash my body down with alcohol and use ice packs. I can't use NSAID. We have such a hard time getting over things or is it just our dysregulation of body temp???? Bellamia ~ Quote
Birdlady Posted April 23, 2011 Report Posted April 23, 2011 Yes I have had this happen too. For me it is just dysregulation of body temp. If it's warm in a room, then my temp goes up. If it's cool, then it is normal. Quote
enko Posted April 23, 2011 Report Posted April 23, 2011 I have the same thing! And to be honest, I feel like a poo too, big time. My neuro claims it has nothing to do with my neuro system (?!), and blood tests are always fine Doctors are looking at me like that I'm crazy Quote
Brye Posted April 24, 2011 Report Posted April 24, 2011 I had that a couple years ago. I had everything scanned and tested. My infectious disease doctor finally discovered it was probably mono.Brye Quote
icesktr189 Posted April 24, 2011 Report Posted April 24, 2011 I have that all the time.. The dx me with ME/CFS and epstein barr virus that was active. I dont know if it is still or not. Tons of CFS patients have this problem. Quote
Bears Mommy Posted April 24, 2011 Report Posted April 24, 2011 I've been running a low grade fever for the last two months, it goes higher in the evening. I normally have a low temp - about 97.1 on average. It's so hard to convince doctors that I'm running a temp at all, when it's only got as high as 99.7. These last two months have been some of my worst, I've felt absolutely awful. About a month ago my lymph nodes in my neck swelled and have been very "bothersome." At first I thought it was a reaction to a medication, but the swelling hasn't gone down. I feel like my throat is swelling shut some days. I've been wondering if it's epstein barr virus doing this to me and making everything a thousand times worse. My temp is slowly going down too it's only in the 98 degree range now and I'm starting to feel a little better and I don't know if it's from the florinef or the virus is being fought off. So many unknowns.... Quote
enko Posted April 24, 2011 Report Posted April 24, 2011 My lymph nodes in the neck are swelled too! I don't think it's just a coincidence.. But I also have problem convincing docs that I have temperature It's just soooo frustrating! Quote
tinkerbella Posted April 24, 2011 Report Posted April 24, 2011 I just had them recheck my EBV and it showed the past very high nothing current, I was on antibiotics and I said to the doc could that have messed up the test and she said it may have. I think all our meds mess up blood work. Quote
enko Posted April 24, 2011 Report Posted April 24, 2011 I'm not taking any meds (except for my eyes when needed), and my blood tests are always "fine" (at least they say so) Quote
Bears Mommy Posted April 24, 2011 Report Posted April 24, 2011 In all my searching I found this site very interesting. Especially this quote in relation to the Epstein-Barr Virus. Most commonly, the lymph nodes of the neck are swollen, but any lymph node may be swollen. In some people, the only symptom is swollen lymph nodes. Fatigue is usually most pronounced during the first 2 to 3 weeks and may last 6 weeks or more.I'm wondering if repeat infections of EBV end up being on such a low scale that they are hard to diagnose? Instead of having full blown mono again, your body fights - but on a lower level causing low grade fevers, swollen glands, fatigue, and general malaise. So you might have an elevated white blood cell count, but it is not high enough for them to diagnose you with mono or any other infection. Quote
tinkerbella Posted April 25, 2011 Report Posted April 25, 2011 That's what I wondered...But mine are low. They just chocked mine off to another virus and said, "don't come back to the hospital even if it is high again. " lol This was not my regular hospital, as an ambulance had to take me to the nearest one. I feel lucky to have a team that understands that 98.6 means something is brewing in this potsy body. Well at least most of us understand and we know it is something that happens with all of us. My doctor also mentioned that in some people it can be a drug allergy. It has been a long week for me and I don't remember if that has been mentioned or not. They kept trying to tell me I was allergic to Tylenol and I'm not along with a few other meds. My list is long and it is like playing telephone when one hospital talks to another. Tylenol, I guess can cause drug fevers. I can't take much to bring my fevers down and at one point they wanted to blame it on that. I need to send a list of corrections to the hospital before I forget. It never ends, but could be worse. Quote
arizona girl Posted April 25, 2011 Report Posted April 25, 2011 Hi guys this has been happening to me to for the last few years. I would get low grade fevers in the afternoon or when I would talk on the phone, I would lay down and they would go away. Then my colon ruptured and the highest my fever got was 100.4 with a flaming infection. Fast forward to this last year and I was finally diagnosed with the primary immune deficiency CVID (common variable immune deficiency). Also over the last year the low grade fevers started matching up with mild to high elevations in my white blood count. I'd been tested for many auto immune diseases over the years, but never a deficiency. When you have an impaired immune system you can't mount a normal fever when you have an infection. So even though you feel really sick you won't have the normal signs of infection with a good healthy fever that you body uses to fight the infection. I would have pain, fatigue and night sweats, but without a robust fever no one thinks your sick until something bad happens like a colon rupture. Does that make sense? Anyway I also have positive titers for the cytomegalo and HV66 viruses which are also associated with the epstein barr which is normal in me. So there my be some other viruses to look for. CVID is also associated with companion auto immune illness. I have the autoimmune small fiber neuropathy which attacks my autonomic functions. These kind of issues do cause pots symptoms and may be the underlying cause. While there are other causes for pots, if you find that you feel like you are always fighting something off, it couldn't hurt have your immune system tested. I am getting immunoglobluin replacement infusions, but we are still trying to put down the infection. I just went to mayo and will be seeing their infectious disease hopefully soon. Though of course this week my WBC was normal for the first time in 6 months, so maybe the infusions are starting to take hold. If you want to know what tests I had done let me know. Quote
HopeSprings Posted April 25, 2011 Report Posted April 25, 2011 Arizonagirl "I have the autoimmune small fiber neuropathy which attacks my autonomic functions." How was this diagnosed? Quote
arizona girl Posted April 25, 2011 Report Posted April 25, 2011 Arizonagirl "I have the autoimmune small fiber neuropathy which attacks my autonomic functions." How was this diagnosed?First an abnormal tilt table test, then referral to a neurologist who specializes in autoimmune neuromuscular illnesses. He did a number of test on me, but it was the skin biopsy they did that diagnosed the small fiber neuropathy. I was treated with plasmapheresis which improved my HR/BP confirming that it was autoimmune in nature. During that time I got anemia and further blood work showed the immune deficiency which is then treated with IVIG. Treatment is a work in process and not with out set backs and adjustments, but I think it is the right course and should keep me from dying from an undiagnosed infection, which happens with this condition. The IVIG in theory should help the small fiber damage, but this part is still in the research stages. It does help other forms of autoimmune neuropathy like polyneuropathy, ms, stiff persons these are all fda approved for this kind of treatment.How were you diagnosed? Quote
tinkerbella Posted April 25, 2011 Report Posted April 25, 2011 Yes, Please share what test you had done. Thank you very much. I'm being sent for more tests in July, as that is the soonest I can get into Mass General, Boston. Thanks for any info you can give usUs POTSIES, who don't feel much better, must stick together!!!! Love all of you ~ xxxx's Quote
RockiesGirl Posted April 27, 2011 Author Report Posted April 27, 2011 Thanks so very much for all of your replies. Sorry it has taken me a bit to get back with you. I didn't toggle the topic correctly ;o) Anyway, when I was in the hospital this past January the doctor said my immunoglobin levels were very low and he was the most concerned about this aspect. I told this to my cardiologist but he did not seem concerned. Maybe I need to see someone else?? Any more insight you might be able to share would be very helpful PLEASE!!! I am going to another Heart and Neurovascular center next month and would like to be armed with as much information as possible. If I do not see results from this it is off to the Mayo in Scottsdale.Thanks again everyone for your Posts They are very much appreciated!!! Quote
arizona girl Posted April 28, 2011 Report Posted April 28, 2011 Hi guys, I had my infusions this week so haven't been up to replying. For those of you who suspect or have had low immunglobulins. The doctors that would be able to diagnosis are neurologists who treat autoimmune neuropathy, some hematologists and allergy/immunologists. This is a sub specialty in all these specialties, so you have to call and ask if they treat and test for this, if they are treating a fair amount of patients with IVIG infusions, those are the best ones to go to as they are more familiar with how to treat and manage. The umbrella name for the many immune deficiencies is "primary immune deficiencies", there are quite a few of them, so you need to see where you fit, the most common is CVID common variable immune deficiency or hypogammaglobulinemia which is what I have. My IGG and IGM were very low and have probably bounced around for years. There is the IDF website and several other under primary immune def. web sites if you want to read more, google it! They are actually having a patient oriented conference here in scottsdale, arizona in June, if anyone is interested. The main tests are a Total Quantitative immunoglobulin (igg, iga, igm), sub igg panel, ig d, e and vaccine challenge testing. If your immune deficient and medication reasons for causing it are ruled out immunoglobulin replacement will help your body fight off infection better. If you get a lot of different types of colds, flu, infections, female or gi infections or low grade fevers or feeling poorly without signs of a good fever, checking your immune systems is important. When you don't have an effective immune system you can't mount a proper fever when you are sick, ie, my colon ruptured wbc in the 20's highest my fever got was 100.4, when I'm sick mostly it is in the 99's and it goes up and down in as little as 15 minutesOther autoimmune disease are also common companions of cvid's etc. ie, my autoimmune small fiber neuropathy. There are also other ig testing that is done for specific diseases these are different tests then the total QI test, don't assume all ig tests are created equal. Hope this helps.Funny about Scottsdale Mayo, (I live here) I'm out there right now to tie up the loose end cross specialty issues that come with cvid. I will be seeing someone in immunology about all this because of my infection rate and to test for food allergies before they do my gi work up. I'll let you know how that goes, I see on their website their primary immune center is in rochester, but there are two docs here one who looks like he at least is familiar with it. BTW what where your immunoglobulin levels and fyi cardio docs will know nothing about TQI and how they may relate to Orthostatic intolerance of the BP/HR especially those of us who swing. Many illnesses outside or cardiology can cause this to happen, the cardio's will try to treat these symptoms, but if it is being caused by noncardio reasons it is just a band aide while you get sicker. Quote
RockiesGirl Posted April 28, 2011 Author Report Posted April 28, 2011 Funny about Scottsdale Mayo, (I live here) I'm out there right now to tie up the loose end cross specialty issues that come with cvid. I will be seeing someone in immunology about all this because of my infection rate and to test for food allergies before they do my gi work up. I'll let you know how that goes, I see on their website their primary immune center is in rochester, but there are two docs here one who looks like he at least is familiar with it. BTW what where your immunoglobulin levels and fyi cardio docs will know nothing about TQI and how they may relate to Orthostatic intolerance of the BP/HR especially those of us who swing. Many illnesses outside or cardiology can cause this to happen, the cardio's will try to treat these symptoms, but if it is being caused by noncardio reasons it is just a band aide while you get sicker.I did not receive any paperwork except on the Diagnosis sheet when I left the hospital it said "low immunoglobulin levels" Follow up with your Primary Care Physician and monitor. I have been trying to get my records but it is like trying to move a mountain. If you don't mind me asking?? Are you satisfied/impressed/would recommed the Mayo Clinic in AZ? I am in CO and there do not seem to be very many docs out here that deal with this. As I said before, I go to a new Doc in May but it doesn't sound like they have these sub-specialists. Don't get me wrong, I am still going to pursue and ask...But again, THANKS SO very much for your posts!!! Quote
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