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Hi Dr Walt,
I have a 13 year old Grand Daughter, Dx'd with SLE. She went to the beach with her Dad on July 5th and came back with a horrible burn I took photos, the Dr said it was 2nd degree burns, her back was burned also but not as bad as her face. Well I kept silvadene on it and she took antibiotic to prevent secondary infection. She just layed around like a malaise of some sort I thought it was just the burn then her appetite decreased and she refused to drink much. I woke up one morning and her temp was 104 I took her immediately to the Dr and he immediately admitted her. All of the test were done she had stool samples, blood tests etc etc. Her temp kept going up and she was given meds to bring it down. I found out in the course of events that the "West Nile Virus" was really bad in the area where she went to the beach so I asked her Dr to test her. He did, but she continued to get worse. Then was on TPN, after 8 days and nothing substantial from any tests (the west nile test had not come back) she kept getting worse, so was transferred to UTMB in Galveston, Tx. There I showed them the photos of her burn and automatically they assumed it was SLE, after me telling them THIS WAS A BURN from being at the beach and she is blonde and very fair complected. They did not want to hear this, since she had been so ill with temp and all for 8 days, they refused to retest for the west nile virus, instead going ahead with IGG per IV over 4 hours, as a treatment for Lupus. Well in 3 and 1/2 hours she went from a confused, sick 13 year old to the mentallity of a 2 year old child. Up until this time she knew us and was mostly coherrant but just very sick, and weak. I was soo angry, I told them to transfer her to Texas Childrens Hospital, because they told my daughter when she asked them to hold off on the IGG Tx untill the tests came back for west nile they refused and said they did not need her permission to give the IGG treatment and went ahead with it, well, she went into a grandaml seizure just at the time the team got there to pick her up to take her to Texas Childrens Hospital. They took her directly to ICU, (still no results on the west nile) Texas Childrens began agressive TX for SLE in ICU and testing they tested for limes, we found out she had been tick bitten in July, the test came back with a positive and a negative(whatever that means) BUT still to no avail with the burn photos, they continued to treat her aggressively for SLE. They treated her with "Cytoxin" chemotherapy and contiue to treat her now with the chemo once a month. OK she became stable and had been in the hospital for 1 month. They released her on aggressive Tx's for SLE. I came home called her PCP and he said he had a Positive test from the very first "West Nile Virus" and the CDC contacted me. They requested that the tests be reapeated. This time they came back negative, BUT she had had cytoxin and a blood transfusion since the first inital test for west nile AND IGG.
OK she came home with me, very weak from all she had been through for the past month. They wanted her to go into a rehab for PT continue to see Rheumatology and Nephrology, she had a liver biopsy after the IGG which showed kidney damage or scarring.
West Nile has all of the symptoms that SLE has, this child within a few weeks despite the chemotherapy and weekly solumedrol IV's, was up running and back to her normal self.
What I am getting to "IS there a chance she was misdiagnosed. I have asked the Dr's numerous times they refuse to retest or do anything pertaining to the West Nile or Limes Disease, a kind of "This is the way it is, she has SLE, and we are going forward with the treatments!"
Please let me know your thoughts on this.
Thank You
Judy
In Reply to: SLE posted by Judy Smith on November 23, 2002 at 12:01:48:
Hi, Judy.
I am a little confused: "she had a liver biopsy after the IGG which showed kidney damage"????????
Only with a monopoly could such a story happen.
It would be presumptious to try to diagnose this from here without even seeing and examining her. After all, she has already had the best the monopoly can throw at her.
MY suggestion would be that whatever else is tried for her, serious wellness canot hurt and would give her her best chance to deal with what has to be an autoimmune condition (see the archives). See the wellness archives and get the free protocol on the home page "How to be Healthy".
Let us know how she does and what you learn.
Walt
In Reply to: Re: SLE (Archive in autoimmune.) posted by Walt Stoll on November 24, 2002 at 08:00:44:
Sorry Dr Stoll,
It was a Kidney biopsy she had. And yes she continues to have to have chemotherapy monthly and solumedrol IV's weekly. But my concern is that she bounced back so quickly after the ICU stay, and the positive West Nile Virus test.
Thanks
Judy
In Reply to: Re: SLE (Archive in autoimmune.) posted by Judy on November 24, 2002 at 10:55:40:
Thanks, Judy.
Since she already has the best that conventional medicine has to offer, the best that I can suggest is to continue it and add serious wellness to her program.
Walt
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