posted
Hello, My story is long and exhausting. August 2008 I was gardening, or walking my dog in my woods. I found a hot to touch red rash on my upper arm. I was seen in ER, diagnosis no tick was found doctor started 200 mg doxyclcline. To make this long story short I will list type of doctors, biopsy reports, diagnostic test and my current condition. At the initial area of rash, the appearance was a defined bulls eye rash that itched and was warm and tender. I sought medical help which includes 5 primary care doctors, 7 dermatologist, 1 infectious disease doctor, I have had 3 lyme test - 2 Elisa, 1 western blot, all were negative. My first skin biopsy diagnosis was erythema migrans with perivascular dermatitis. I continued on Doxyclcline 200 mg for seven weeks. No change in the rash and my arm began to ache and throb from morning to night with no relief since. Weakness of the arm began at the end of November, which caused a scald burn accident due to my arm weakness after a pot of soup spilled down my legs and feet and left scars which I am also dealing with. To Date All Diagnostic testing Lyme blood test, 2--Elysa--Negative 1 Lyme Blotter--Negative CBC Blood work--2 testings, - Normal General Blood testing for auto immune -Normal, Blood test for anemia-Normal Thyroid Panel- Normal, CA 125 Serum - Normal range. CEA test - Normal. Xray of Arm-Normal Xray of lungs- Normal Doppler test of Arm-Normal MRI imaging-reported non specific erythema Urine Analysis-- Some bacteria, castings, white cells, - Dr. Mc Sorley did not find anything alarming and felt antibiotic treatment for urine was not needed. Date 10-01-2008 Punch Biopsy - Performed mid dermis sparce perivascular inflammatory cell infiltrates small to meduum lymphocytes. Microscope features, .......perivascular lymphocytic and lymphoplasmatic infiltrate. Changes warrant consideration of gyrate erythema reaction group. No epidermal changes to suggest contact dermatitis. Absence of eosinophlles militates against insect bite. No fungi idendified Medications I have taken with no result, Doxcycline, 100 mg x a day for 6 weeks, Topicort 0.25%, Clotrimazole and lamisil topical treatments, Cipro 500mg 2x a day, Nystatin 500mg 1 x a day, Fluconazole 500mg 1 dose, Penicillin 500mg 2 x day. OCT, Motrin 800 mg 2x a day, combined with 160mg asprin.
Current testing - Second Biopsy Immunofluorescence Findings - Non specific inflammatory dermatosis possible dermatomyositis or lupus erythematosus. I most recently has a very long blood panel for antibodies tested for base line indicators of lupus all were negative. CT Scan recently revealed a small cyst on ovary and a small cyst in left kidney. I also had a test by a physical therapist to test my muscles and nerves of my arm and results will be in this Wednesday which I will meet with my new primary care to review. Somehow, I am not convinced this is not lyme disease. I was a healthy happy normal woman with no disease of any kind until this area of my arm had a bulls eye rash in August. I am told repeatedly by every member of the medical community this is NOT LYME or it would have tested as lyme disease. So, the medical community has left me with this conclusion...that this could be something they will never determine what caused the rash. Also the rash could be non specific and go away in time or it can be a result of a systemic disease or malignancy in my body " But go on with life and do not let it consume you" is what I am told. Go on with Life? with this hanging over my life? I am in pain every day of my life and a arm that has a rash that is now under my skin and a very large swollen area with a deep purple color. If anyone out there knows where I can have a doctor that is versed in Lyme disease I would be very appreciative to any information. I do not know where or who to turn to. Thank-you in advance for any help. I live 20 miles north of Pittsburgh Pennsylvania but am willing to travel
Posts: 9 | From Economy PA | Registered: Jan 2009
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posted
I posted some comments to your post under Medical Forum. Decided to repeat some of it here in case you or others might benefit.
I don't know of docs in your area, but in addition to board responses, you might want to contact a local support group. The link is on the left hand side of the page. Looks like there may be a couple of groups in your vicinity. A local support group was very helpful to me in sorting out which doctors could be the most useful. (Things like cost, wait times, conventional or alternative treatments.)
Best Wishes
Posts: 170 | From New Jersey | Registered: Jun 2008
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bettyg
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check your profile for names *****************************
please break up your long, solid block post into many short paragraphs; use these suggested guideliens please; we neuro lymies will really appreiciate it, and be able to answer you then.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
DebAZ's 12.08 comparison of 05 to 08 new guidelines:
Differences in newest Guidelines compared to 2005 Guidelines
Page 25 26 and 27 Added section "Sorting out the co infections"
Page 28 New info given to get supplements from additional places
In all areas of Supplements there has been various changes and additions to each description and i advice people to re read the full supplement section as well the following additions to the whole supplement section:
Basic Daily Regimin NT Factor Added
Alternative Treatments CITICHOLINE Added
Immune Support Transfor factor Added
For Fatigue Took out "For Fatiuge" section
Other Optional Vitamin D Added
Page 31 "Lyme Disease Rehabilitaion" is rewitten and added to
He mentions Flexcreme (Flex Cream) by Pharmanex as great for body pain
. suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
sorry, link takes you to END vs. beginning, so just use UP ARROW and go to the TOP for detailed info! thanks!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results!
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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