Low Grade Fevers Related To Pots Or Something Else?

[surfgirl14]

Hey Guys. So as ive said before I hve a rough summer but since this past visit with my pediatric cardio he is being very proactive in trying to figure out wats wrong. He did a lot for me when I saw him on wednesday and I am very pleased but one thing we didn't cover was the fact that I have been having low grade fevers (99-101) pretty consistantly (atleast one a day) for the past several weeks (about 4)... I have proof that I have had them thank god its documented in my medical records from when I was in the hospital .. every time they took my temperature it was low grade like 99 i think the highest it got in the hospital was 99.8 or something like that. I have been having some urological symptoms that I went to my urologist about but she says that everything looks fine that my bladder infection went away (I had one like 2 weeks ago) and that everything was all good and to let my pediatrician knw wat was going on with the fevers. So she called me yesterday unexpectedly but thank god for tht so I told her how concerned I was with everything tht has been going on. She called me in a antibiotic and I am set up to have my yearly physical.. she said she wants to look at everything head to toe to figrue out if she is missing something she also said she was gona email my cardiologist and see if its related to POTS... now after all of that sorry lol my question is ... is this related to pots or something else? I have tempeature dysregulation with it but its always been low like under 98.3 so for it to just randomly start for the past several weeks being 99 I can tell something isn't right. I feel flushed, hot and I knw this temperature is not right for my body. Its miserable and makes me really tired/weak (which those symptoms do go along with my pots just not the temp thing)... So anyways if anyone has experienced this or might knw if it's related pleae let me know.... One last thing is my peds cardio did say tht he was gona put me inpatient at either nationwide childrens or his hopsital duke childrens for a couple days for a workup on mitochondrial disease he feels like there is something more going on with me.

PS..

I got into nationwide childrens for the motility clinic (it was a 8 month waiting list) but I got in 2 weeks on Aug the 16th... They are gona do some testing and might be doing some other treatments for my gastroperisis Super excited all my doctors have been really worried about my weight I have lost another 7lbs since may.

Thanks all who took the time to read this it is much appreciated im sorry it was so long.

Hugs

[arizona girl]

Hi Kayla, I was having low grade fevers like you describe and even with a very severe infection only got as high as 100.2 when my colon ruptured from diviticular disease of the colon.

It turns out I have something called common variable immune deficiency CVID it is also called hypogammaglobulinemia. If you go to the website primaryimmune.org you can read about it.

Have they done a cbc on you when you have a fever to see if your wbc (white blood count) is elevated? The blood test to check and see if you have an immune deficiency is called a "total quantitative immunoglobulin" it will check your global igg,iga and igm. Then there is a sub igg panel, igd and ige and a vaccine challenge test.

Many people who have this will have a lot of upper respiratory infections, I didn't have those kind of infections and had more gi and female fungal and bacterial infections, which can happen but isn't as obvious. With the fevers you may want to rule this out.

Also with motilities issues it is important that they see if you have small fiber neuropathy, that can be determined by a skin biopsy along with a qsart test. The small fiber nerves are your autonomic nerves and are found where ever your body's autonomic functions are which included the gi tract and control of blood pressure and heart rate.

Hope this gives you something to go on. I'm so glad you have docs looking out for you, take care.

[corina]

Glad to hear that your doctors are taking good care of you Kayla! Hope they can figure out what's going on.

[surfgirl14]

arizona girl- do u mind if I print this out and show you her response? it sounds like what u said might be something that I would like them to check into... let me knw if ur ok with her reading ur response

corina- Thanks... Yes I am very sad to say my pediatrican (who has tryley been one of the best doctors I have ever had) is moving to another practice in which I can't follow her too due to the new practice shes moving to doesn't accept young adult patients so its sad that she is leaving

[arizona girl]

Yes, you may use my response. Even better though go and print out the info at primaryimmune.org for cvid. Also google charlotte cunningham rundles and cvid and print out her research papers.

If you google small fiber autonomic neuropathy, skin biopsy and/or with Dr. todd Levine, you will find research papers on this too, print and bring that along with you.

That is really tough when a doctor you've come to rely on can't see you anymore, been there myself.

[the4richards]

I also had very frequent low grade fevers with no apparent infections. Docs kept wanting to give me antibiotics even though they couldn't find anything but fevers persisted. All stopped when I got POTS a little more under control. More frequent, smaller meals and cut out sugar and "white food".