posted
Nicole is still declining despite being on ABX all these months. Now bedridden, excruciating pain 24/7.
She recently had 24 hours where all the surface veins on her legs got bright red, looked like a strange street map. Then that went away and she broke out in blisters (not hives) on both arms and her body. She had them cultured, nothing. Not shingles. Also lost the use of her right arm.
Ever hear of this? Ideas?
Nicoles Mom
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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bettyg
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posted
no i haven;t but up we go for folks to read this and reply!
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posted
It could be poryphria. That causes a host of symptoms. It is connected to a chronic chlamydia pnuemonia infections. info at cpnhelp.org good luck
Posts: 433 | From new york | Registered: Dec 2004
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treepatrol
Honored Contributor (10K+ posts)
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Whats is/was she on at the time of the problem?what MED Bart causes overgroth of viens capilaries
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Hubby's mother had this once. If I remember correctly though her skin rash looked a lot like hives though.
A dermatologist diagnosed it visually. Treatment was a shot of prednisone I think and antibiotics.
Could you post a picture or give a better description? Are these bumps clear or bright red? How large are the "blisters" -- pinprick size or larger?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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blaze
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posted
I had a road map of blood vessels over my heart and down my left arm, though I'm not sure which bug causes them.
They are still there, not quite as prominent after some antibiotic treatment. I'm testing positive for Lyme and bartonella now, indeterminate for Rocky Mountain Spotted Fever and typhus (meaning I was definitely exposed and had it at some point). Has she been tested for the latter two?
I also had babesia, but that one is negative now.
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AliG
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Note: SJS can be VERY serious, if it's possible I'd get her to the ER.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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She has not been tested for co-infections as her LLMD thinks the tests are unrelaible and so a waste of money. He is treating her as if she has co-infections.
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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AliG
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posted
SJS = Stevens-Johnson Syndrome.
I posted a link in the thread above.
What meds has she been taking?
If you read at the link it tells the possible causes & signs/symptoms.
I've seen it listed as a possible adverse drug reaction for quite a few medications/ABX.
It can also happen a week or two after having stopped some of the drugs, I believe.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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Member # 9734
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Porphyrias are a group of inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway).
They are broadly classified as hepatic porphyrias or erythropoietic porphyrias, based on the site of the overproduction and mainly accumulation of the porphyrins (or their chemical precursors).
They manifest with either skin problems or with neurological complications (or occasionally both)
. . .
Cutaneous porphyria
The erythropoietic porphyrias primarily affect the skin, causing photosensitivity (photodermatitis), blisters, necrosis of the skin and gums, itching, and swelling, and increased hair growth on areas such as the forehead.
Often there is no abdominal pain, distinguishing it from other porphyrias.
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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