Avatar universal

Skin Rash,Joint Pain & Swelling,Fever,Elevated WBC,Elevated Liver Enzymes

*December 2012
Mild skin rash started behind upper leg (not itchy) would come and go up to 3x a month lasting a day.

*September 2013
Swollen right knee couldn't bend for few days, pain switched to left knee after right knee pain & swelling went down also lasted a few days.

*October 2013
-Started with headache
-Few days later joint pain in knee where I couldn't bend it or step on foot with a lot of pressure
-Fevers from 102-105 everyday for 2 1/2 weeks
-Full body joint pain & swelling (ankles, knees, elbows, wrist, fingers) could not move or walk, could barely make it to bathroom had to hold on to wall & shuffle feet.
-Constant sweating especially at night
-Nausea with no vomiting.
-Sore throat that felt slightly swollen when trying to swallow.
-1st Hospital visit. Checked blood work had WBC of 28, told me 99% positive I had lupus, sent a lupus test after being told they could not perform it, discharged me within 3hrs with a prescription of prednisone for 5days. Told me to return following day to check blood. Next day: elevated WBC still & told me "prepare yourself you have lupus" handing me a 10 page printout on lupus (without having results).. 3 days later I call for results and I'm negative for Lupus.
-Symptoms persist & worsen next 4 days.
- Would not be admitted to hospital  1st time or 2nd visit (was literally told by one Dr. "It's because  you don't have insurance")
-Got appointment to see infectious disease specialist, had to get help walking could barely stand, had fever of 103+, dripping sweat. From the Dr's office I was admitted straight into the hospital (different hospital, not the same one that said I had lupus).
- Hospitalized ( after having symptoms for 7+days) was in hospital for 15 days, prednisone controlled fevers and relieved joint pain & swelling.
-Joint pain switched daily from one joint to other joints daily while on prednisone. Pain went from severe to mild after a week on prednisone. Fevers and shaking that would last hours brought down with Tylenol and ice packs daily. Slowly became fewer a day till they became one every few days till they were gone.
-Rashes got as bad to showing up around face on cheeks. Rashes went away on Prednisone.
-Discharged with no diagnosis or cause
-Prednisone treated & prescribed for fevers & joint pain after discharged.
-White Blood Cell count went as high as 42 (was told normal high was up to 11)

Hospital Testing (October 2013)
Lupus -- Negative (twice)
Full Body CT Scan -- Normal
Heart Ultrasound -- Normal
Bone Marrow Test -- Normal
STD & HIV Test -- All Negative
Rheumatoid Arthritis Test -- Negative
Slightly Elevated Liver Enzymes (never had before)
Blood test to check bacteria or viruses -- Negative
Chest X-ray -- Normal

Last Blood Test Results (11/5/2013)
RBC -- 3.30
Hemoglobin -- 9.3
Hematocrit -- 29.1
Platelets -- 559

*November 2013
- Had fevers, joint pain & swelling a few times.
- Stopped prednisone in the middle of November . Slowly lowered my dosage till I stopped.. after being advised not to stop taking it or my fevers & joint pain would return.

*December 2013- January 2014
-No more fever
-Skin rashes come and go mainly on upper thighs, butt, lower back sometimes light or mildly on hands, rashes last from a few hours to a day & reappear either everyday on upper thighs, butt, & lower back. Sometimes rash feels itchy on butt for 10min after working out but overall rash is not itchy. Mild rash around wrist and top of hand.
-Mild joint pain on one knee lasting a day, following day joint pain switches to other knee then goes away. Occurred two times after physical activity.
-Fingers have gotten swollen one time this month for two day.
-I have noticed stress or anxiety triggers rashes to become more severe and spread making them larger than my normal everyday rashes. Also trigger joint swelling with mild joint pain.
-Every time I shave legs rashes appear within 15-20min on upper thighs then spreads to butt and upper thighs within an hour.
-After showering rashes become larger and darker in pink coloring.

I have started showering with organic castile soap, stop using lotions just natural oils since June 2013 thinking rashes could be allergies.

I was advised to see a Rheumatologist after a week or 2 of being discharged & a Hematologist if my white blood cells have not lowered but I can't afford all the doctors visits, lab test or other procedures they might want to do.

Can someone please help me if you've seen anything like this? Maybe a more specific answer to what you think this might be & what specific specialist I should see. Instead of getting the run around to varies specialist with no answers. I can't afford to see 10 different specialist to try & figure out who can help my condition or finally give me a diagnosis.
I don't want to be on Prednisone my whole life since that's what was advised by the Rheumatologist at the hospital. Over 2 months off Prednisone after two Rheumatologist told me I'd NEVER live a normal life without it or if I stopped taking it.

Insurances won't approve me because my RBC, Hemoglobin, Hematocrit, & Platelets "are not in acceptable range",

***Any help would be greatly appreciated***
1 Responses
Avatar universal

The top two possibilities that strike my mind are that you are either:
1.)  Having a bad reaction to something, ie medication reaction--many medications have your exact symptoms in their list of "warnings of severe reactions."  I won't bother typing specific meds on here, since there are myriad, but if you have started taking any new meds shortly before your symptoms appeared, that definitely could be the cause.  If so call a doctor immediately and stop that med!
2.)  Contracted an infection, and a nasty one.  HIGHLY commonly overlooked, misdiagnosed and mistreated are infections which can be caused by tick bites.  Go to the Tick Borne Disease Alliance website
the Centers for Disease Control home site
and the International Lyme and Associated Diseases Society site

You can type your symptoms into various search engines (google, ask, etc) and see what pops up.  Babesia and Anaplasma are two organisms, commonly transmitted by ticks (but not only ticks), which cause some of your symptoms.  The websites I listed above are great resources and I recommend reading through any information they have.  There are many nasty infections and what you have sounds serious.  Don't let the medical community push you around like I have:

I live in CT, the "state of origin" of Lyme Disease, and yet I can NOT get ANY medical treatment for my symptoms, which I am almost convinced is disseminated Lyme Disease with a smattering of Bartonella.  You would really start to think doctors have been allowed to get their degrees out of a Cracker-Jack box, and that their ethics are simply nonexistent.  I have been sick for many years on and off, worked through it until last September when I got symptoms similar to West Nile (which may be what it was)--one ER visit during a seizure (never had one of those before) and they merely gave me a CT scan then dumped me out with a recommendation to see a neurologist--none of those take my State insurance.  Yeah I'm too broke to afford an HMO like you are, self employed and all of that.  Couldn't even get into a doctor for weeks, 6 months to see a specialist--now I seem to have permanent damage to my spine and CNS (including herniated discs in mu neck and back, persistent neck tremor, spasticity, and weird vertigo spells to name a few).  I'm only 35 and I have a 3 year old son.  It's like my life is over--I can't perform my job any more, I can't even figure out what kind of work I COULD do since I have erratic symptoms flare-ups, I can't get medical treatment, and I'm lucky I am well enough to care for my son (I wasn't at all for quite a while).

I have been told that if you do your research, come in ARMED with prewritten questions, printed data, and keep logs of your symptoms, you can eventually be forceful enough to command a doctor's attention and get diagnosed, and treated.  Although it's frightening that you have abnormal blood results, at least it's hard physical evidence that something's screwed up, and someone should listen.

I hope you are ok and find the help you deserve.  Good luck and best wishes!  -t1cked off in CT

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