Sudden Mystery Illness..is It Related To Pots/eds Help!

[sisblostg]

I have h-pots and eds 3 (possible eds 4, still waiting to hear about blood work).

I have, been very symptomatic for the last 2.5 years.

1 month ago I was having a decent day, was able to cook dinner,played with the kids and even made a trip to the post office.

It had been a busy week at my kids school so I was a bit run down but was looking forward to resting over the weekend.

That night I woke up with 105 degree temp, usually anything over 99.5 makes me feel horrible so 105 was bad. I had a massive headache, mild stomach ache and no desire to eat.

24 later I went the ER. low WBC (3.4) sed rate elevated, billrubin slightly high (1.4 I think) the fever broke to 100 with double doses of motrin and tyelnol. They gave me iv antibodics (all they could guess was a kidney infection which was not the case because nothing grew on the culture).

The next week I still had a fever, it would spike to 102-103 if I didnt take constant motrin. I had a abdominal CT(I have a history of severe constipation and slow gastric empty) which was normal. My wbc went up to 4.1. and sed rate drop a bit.

I went to get my blood work redone and I freaked out because I had a head to toe rash. Weird only my hands and feet itched like nuts. The rash last 4 days. The dr said he thought it was related to an unknown virus?

It is 2 weeks later and I still am having fevers, though milder, I have no desire to eat anything and if I do I feel full quickly or very naueous. I have lost 9 lbs this month. The stomach pain comes and goes and my stomach feels like an an acid pit. If I eat more then a few bites I get so sleepy. The last three nights I have fallen asleep at dinner. Im almost afriad to try and eat. Im eating the squishiest protien I can.

I have an appointment next week with a local GI dr and had blood work repeated today again.

Im not sure if the fever/rash are seperated or related to to the stomach issues? I just really would like to be able to be able to eat one meal. I dislike losing weight(Im not skinny but I have normal BMI but losing 9lbs without wanting to scares me).

I have had slow gastric empty and constipation issues for 2 years but I have been so careful with my diet and have been okay for the most part. I have never had pain, so much acid or a fever before. I also do not like being down for so long, even a few days in bed with af fever seems to set me back months of progress on my pulse issues.

Any tests I should ask for or meds. My local dr's are clueless with the h-pots and eds.

[Katybug]

Sorry you are s unwell. That's a really high fever. The only thing that jumped into my mind might be to ask your docs about Scarlet Fever. I had it when I was little and it does have high fevers and a bright red full body rash associated with it which I believe you can google images of the classic rash to take a look. I hope you feel better soon.

[puppylove]

I know you didn't say your throat hurts, but strep can give you nausea, high fever, and a rash. Maybe get a culture just to be sure? I hope you feel better soon!

[sisblostg]

I would love to have a sore throat or sinus symptoims, something obvious. I did get a strep test and they also did some blood work for chronic strep which were okay.

I had a 8 month battle with CMV 9 years ago but it my blood work did not show evalated CMV or EBV (I had bad mono in college). My vitaim D is still super low like a 6 after taking 50,000 a week.

I do have very swollen glands. One large one in behind my ear that hurts to turn my neck.

I did already have my gallbladder out. It had a large clot not stones. How I feel right now is a combo of how I felt the day I got the clot in my gallbladder and when I had mono.

[Lemons2lemonade]

This sounds to me like your immune system is going wacky. The rash is inflammation, and the fever is also an immunorespone. If your wbc count is low though, that wouldn't make a lot of sense. I know this sounds terrible and I pray to god it is not the case, but you might want to get tested for hiv and leukemia. It also could just be the eds attacking your white blood cells. I would think that the low white blood cell count has a lot to do with whatever it is that is going on. Here is a list of causes http://www.mayoclinic.com/health/low-white-blood-cell-count/MY00162/DSECTION=causes Also I am curious, did the motrin help the rash? I hope you feel better and that this resolves itself. Being sick, especially with a fever is never fun.

[bunny]

High fever is usually a telltale sign of infection. At the very least, inflammation. POTS related? Probably not. but POTS certainly isn't going to help the way you feel.

[Katybug]

Had a couple more thoughts...

Have you had a Lyme test? And, also a tests for Lyme co-infections (Babesia, Bartonella, etc.)? (Lyme can cause all of the things you are describing.)

If you still have enlarged lymph nodes, maybe its time to ask for a biopsy of the lymph nodes if they are not getting any answers with bloodwork.

[arizona girl]

Yes, I would pursue the low wbc. The mayo link was great. A hematolgist is a type of doctor that deals with the blood. You said you live in the desert. Valley Fever is spiking in arizona right now and can appear with a rash. A friend of mine had this happen.

What are your doctors saying and did you get copies of all your blood work so you can read it yourself? I would say that you need to keep seeking what is wrong due to the serious illnesses that can be associated with a low wbc.

have you googled low wbc and rash to see what pops up?

[Jacquie802]

Have you started any new medications within the past 3 months?? My mom had TENS which is a severe form of SJS, and she had a very high fever, rash, and blisters in her mouth. I don't mean to scare you, but if you've started a new med that could be the cause...

[sisblostg]

HIV is a No ( I have been tested a bunch of times due to the past CMV & recently for life insurance & I don't partcipate in anything that could cause a new infection), I got tested for lyme a few years ago but not recently. The dr pushed off cancer by a combination of some blood work/cultures and that I have had just about every part of my body scanned/MRI recently (head, legs, feet, spine, abdominal). The lymph node that is the biggest is one that has a history of getting big during past infections so the dr didn't seem concerned because there was records back over 10 years of that same node causing issues. Should I ask about a biopsy

I dislike my lack of local medical choices but the good side is since all dr's are in the same network they can see every test and I have a print out of everytime I have ever gotten blood taken. It goes back 15 years. I have over 75 results to compare. The only 2 times in the past 15 years my Blood cell count was not in normal range was during the CMV infection and when I had a 2nd trimester miscarriage. These both happen more then 5 years ago. My blood has been normal for the past 5 years excpet very low vitiam D.

How can EDS effect WBC and sed rates? I got dx with eds at the mayo and have had little follow up. The only person who had any knowledge locally was a PT and he just works on pain and mobility not the medical aspects.

I didn't dare say this to my dr because they love to use stress to explain myserty diseases but the week before I got the fever was very stressful. I knew it was going to be very hard. My daughters 2 best friends who lived with us most of the school year(kind of felt like they were daughters) were moving long distance and one of them was moving into a sad/scary situation. I had spent the week not sleeping much ith 3 crying girls. I did the most driving and being out of the house I had done in 3 years that week. The morning I woke up with the fever was suppose to be the first day of my long weeknd of rest. My husband had 3 days off and I had a bunch of dvds and I was planning on total rest. I think this is why the dr says viral illness and brought up the EBV and CMV as possible causes. I didnt tell the dr about the stress part just that I was more active the week before and got less sleep.

I did google the causes. What do I think it could be? some sort of autoimmune disorder (I have wondered about Sjordens I have severe dry mouth, eyes even nose and my elbows and ankles are so dry it is painful), or the collagen vascular issues. My whole fathers side of the family died of vascular issues young. That is why I got the blood work recently for EDS 4 but who knows if it is some other vascular condition. We have no rhemtologist in town and Im on the waitlist for one about 4 hours away.

I really want some sort of answer. I have been too scared to fly(on top of POTS my dad died on an airplane due to a massive vascular event) and my daughter wants to go back east. We cancelled our trip last summer and we promised her this summer. Before the fever I felt okay if my husband took her for 5-6 days but now he doesn't want to leave me and Im in no condition to fly.

Im also very bummed because the hospital just got a cardilogist that has POTS knowledge and I had an appointment for a bunch of tests a few dayas after I got the fever. Now I had to push the tests back because I want the results to be accurate.

The only med issues have been advil/motrin is really making my stomach worse. I rarely took advil in the past because I have one kidney but since the fever I have taken in daily. Two days before the fever I switched to a different brand of klonopin. I have taken klonopin for 15 years and I could find no pharmacy with 100 miles that had the brand I had taken so I had to take a new brand...not sure if that could make a difference..I guess Im trying to look at ever possibility.

[Lemons2lemonade]

I think the bottom line here is that your wbc count is low. It is abnormal, and can lead to a host of problems not to mention make you susceptible to many different infections. Leukemia is cancer of the marrow which makes white blood cells, which is why a low wbc count can be a marker. The lymph nodes are part of the lymphatic system of the body, which is responsible for immunity, and may be worth looking into. I think they need to biopsy your bone marrow to test for leukemia. I am not sure if leukemia would present itself necessarily as a tumor. As far as the eds, it could be that now your immune system is attacking your white blood cells instead of just your connective tissue. I really hope though that it is just a virus or infection that is using up all your wbcs which is possible and much more likely. Stress can cause a lot of problems in the body and managing stress is a major non-pharmacological treatment for many chronic illnesses. I always say that if I can control it then why worry about it, if i can't control it then why worry about it ~ Is the fever still around? When I took business law in college, it taught me a very important lesson-people can't be trusted even if it is your best friend or spouse when it comes to certain issues, in this case, money. I have been with the same partner for 5 years and during that time I have been tested for hiv 3 times. Not because I think he is unfaithful, but because I know that the stress of illness can create a lot of pressure on a relationship. It never hurts to be tested( other than the pin prick of course ). It can, however, hurt not to be tested. My parents were perhaps the most stable couple I know of and we had a very functional family life with lots of values. After 30 years of marriage, my dad had an affair and no one knew until he left my mom for the other woman. What I learned from this is that when the relationship becomes stressed, anything can happen, and sometimes you have to look out for number one. It is sad, but it is a truth in humanity that continues to repeat itself over and over.

[sisblostg]

The fever was the highest for the first week 103-105 and I had a pounding headache along with it. Now it comes and goes (I have been taking motrin & tylenol daily) and is lower 100-101. It usually is higher at night. Taking tyelnol or motrin and a nap make the fever break easily now. Right now the stomach issues and nausea are most bothersome. Of course the worry about the low WBC doesnt help. I also dislike that doctors only work in office here M-Th. So if you have blood drawn after 3pm on Wen you have to wait till monday morning for results. I'm anxious to know where my WBC is now.

My dr gave me some phenergan for the nausea. I have never taken it before and after having some bad reactions to new meds when my POTS is very active Im scared to try anything new right now. Especially after my trip to the ER(I hate the ER) blew out 4 veins. I still get shotting pains down my arm 3 weeks later. I think Im having some real bad luck because I have had 100's of blood draws(I was on comudian for 5 years) and IVs and never a blown vein. It is 108 out and Im embaressed to wear a short sleeve shirt because I look like an abuse victim.

I know I have a worrying problem and I end up caring too much about people. The positive side of POTS has been spending more time with my kids and helping them learn. I can't believe how much my kids learn just by spending an hour a day with me working on a subject when we used to spend that time going out to movies, dinner, or at the mall. My teenage son who had a learning disablity is now schedule to graduate high school and college at the same time. My daughter skipped a grade and was offered to skip more. Now every parent wants to know what I did and suddenly I have a ton of kids here after school. Up to 20 a day. In some ways it keeps me busy and makes me happy I have something positive to do but with that many kids the law of averages says you are going to hear some sad stories and it is hard not to internalize them. POTS has helped me learned to give up my need for control and helped me deal with change better but Im still a worrier. I do have to say these 2 friends of my daughters that moved, moved to very bad situations so I was worrying more then usual. I can see worrying making you tired or weak but can it really cause a low WBC and high sed rate?

[Katybug]

While I agree that stress can do weird things to the body, I think your docs need to take his situation more seriously. I would ask about the lymph biopsy (and I think that lemons suggestion about the bone marrow biopsy might not be a bad idea either.) It's not normal to have a fever and swollen glands for this long and you mentioned that you only have one kidney...that's not the best situation either to have some sort of sytemic issue going on. I was joking in another thread that I pretty much wouldn't know to go to he ER if I was havng a heart attack or stroke because I am so use to those symptoms being caused by POTS, but, if I were in your shoes right now, I would be pushing aggressively for an answer about this set of symptoms and with your medical history.

[delphicdragon]

Just for the heck of it, get a blood smear for dengue or other parasite like illnesses (malaria comes to mind). You have all the symptoms of dengue intermittent high fever, rash, nausea, abdominal pain, low white blood cell count. And yes, it does occur in the US. I know I'm not House MD or anything, but I studied some of the more interesting diseases while getting my Masters and this just stuck out to me. Wikipedia has a good article.

Good luck and take care!

Sara

[POTLUCK]

As some of the comments mentioned very serious things, I just wanted to note that the WBC is not very low, and also to note that lots of fluid prior to a blooddraw can lower your WBC. This is not to suggest not getting workup the doctor recommends.

[L4UR3N]

I'd make an appointment with a rheumatologist asap. In the meantine, they should also be testing your liver function, amylase, lipase and gallbladder.

[RichGotsPots]

Everyone had great suggestions for you, please stay on top of looking into it as quickly as possible! I know how awful having pots and something else on top at the same time can be... If its infection or weakened immune these help me from time to time. Olive leaf extract, garlic, oregeno leaf extract, vit c, zinc 20 mg every 3 hours all day...

Feel well soon!