Where to next?

[gramsto4]

Going to start by giving you a (hopefully brief) hx: Initial problems began around 26-28 years of age: Started with severe abd pain and heart irregularities (x's several weeks)-became very ill. What I do remember is: Severe fatique, chest and abd pain, nausea, headache, pallor, taken to E.R./family. Was admitted-E.R. physician very concerned over heart. Long story short-They said they didn't know what was wrong-abnormal bloodwork/GI? DX'd with: esophagitis, gastritis, and the flu. Very long recovery time with: Severe fatigue, cognitive problems, digestive problems, significant loss of hair; circular, scaly rash on face, rancid/metallic taste in mouth and with food, notable and recognizable depression in myself and soon developed episodes of panic attacks. (Went through a very difficult period/approx.1 yr.). GP put me on Prozac 20mg and in time did see a notable improvement in depression but took months before improvement in physical symptoms. For the next 12-14 years did relatively well with some ups and downs with physical symptoms: fatigue, headaches/fevers, chest and abd pain, and occas problems with anxiety. Would take Prozac for several months at a time during these years (approx 3-4 times) but, again, I feel I did pretty well and enjoyed my life and family. (Note:) During this time was dx with CFS/Epstein Barr x's 2, PAT, PVC's, arrythmias, costal chondritis (through blood work, stress test, Holter monitor, physical exams). To 1997-8: Abdominal and heart problems became more significant - Echo - MVP with small amount of fluid around heart and mild regurgitation. Cholecystectomy in 1998. Difficult time recovering from gallbladder surgery-multiple symptoms: Hives, fatique, fevers, cognitive problems, difficulty sleeping, night sweats, facial numbness/around mouth-lips swelling, blepharitis, numbness in extremities. Took some time (approx 1-1 /2 years to feel improvement). Also, had difficulty with sun (have since teens), blisters on arms (not from sunburn), facial reaction/rash? raised, reddened, areas on cheeks with pin-***** type rash around eyes. Now to March 2004: Began with some of above symptoms but included muscle and joint pain (GP said menopause/no tests) then in July contracted West Nile (confirmed case)-this was an extremely difficult illness and it seems to have set off something that I cannot seem to recover from:  Have most of the above symptoms, have had three (shall we say, to me) stroke-type episodes. Have had three ANA's-results: 1:160 speckled; 1:80 homogenous; 1:320 speckled. 3-elevated CRP's 1.2-1.8; One elevated SED rate of 37. In the past two years-one slightly elevated serum creatinine, U/A's several elevated BUN's/Creatinine's and positive for ketones. RF was high normal, but okay. CT, MRI, EEG all okay. Seen a rheumatologist (out of town) twice and a neuro once can't get a straight answer - any suggestions? Supposed to see new rheumatologist if she'll accept me (only two in town GP has referred me). Thank you.

[Kevin Pho, MD]

It is difficult to say without examination.  You clearly have had a comprehensive workup performed.  

The rash, sun sensitivity, joint paint and variable ANA tests can be suggestive of rheumatological disease, like lupus or rheumatoid arthritis.  

Another consideration would be dermatomyositis.  This is characterized by muscle weakness and a rash.  Muscle enzymes, or a muscle biopsy, can be considered for further evaluation.

I agree with the rheumatologist and neurological referral.  I would continue to f/u with the second rheumatological opinion.  Another opinion can be obtained, preferably at a major academic medical center.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[KrisKraft]

Sounds like a complex case. I know many people with Lyme with those symptoms. And when you talk about heart issues and night sweats, those are common if you have Lyme along with a coinfection of Babesiosis, a red blood cell parasite similar to Malaria.

Did your face rash look like any of these?
http://www.lyme.org/gallery/rashes.html

Did you visit a Lyme endemic region right before the symptoms started? For example, in Nantucket, they've found that 38% of the ticks are coinfected with Babesia.

You can see a comprehensive list of symptoms in peer-reviewed journal articles under "Symptoms and Characteristics (peer-reviewed literature)" on my website:
http://www.openeyepictures.com/underourskin/uos_resources.html
Fewer than half the people with Lyme ever see a tick bite or a rash. The longer you have Lyme, the harder it is to get rid of.

I would strongly urge you to run to a Lyme-experienced physician, which you can find by typing in your location to "Flash Discussions", then "Find a Physician" here:
http://www.lymenet.org/

And you can also enter your symptoms under the "Medical Questions" section, and you can see what other people with similar symptoms think.

KrisKraft
http://www.lymediseasefilm.com/