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 to get answers.
Posts: 9 | From Economy PA | Registered: Jan 2009
| IP: Logged |
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
What, you're not stressed/anxious?
You don't need a psychiatrist to prescribe an anti-depressant or an anti-anxiety med?
Sorry, I'm being sarcastic based on my experiences. I haven't had quite as many doctors and tests as you have, but I've had my share, and all tests come back negative.
I've been pretty much blown off by my doctors too, and the one ER doctor told me not to come back.
Check out the seeking a doctor section to find a LLMD in your general area.
Good luck!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
14DoctorsLater,
I'm so sorry you are going through this. Sadly, you are going to find this a very common story amoung the people here and the run around we got from doctors.
No, it doesn't make it "right" and it's frustrating as heck since we TRUST our doctors until something like this. You have come to the right place. Welcome!
As Starfall says, I would head over to "Seeking a Doctor" and give a state location so then someone will send you a list of the LLMD's near you.
There are several LLMD's in PA so hopefully one of them will work out for you. They will get the proper testing run on you to either diagnose or rule it out.
Good luck and keep us posted. You WILL find your answers here and get to the correct doctor. Atleast they will take you seriously whether lyme or not but be able to get you on treatment.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
Excellent, I see you have posted in the seeking doctor forum. Getting to an LLMD is the best thing you can do at the moment. 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 in your vicinity. A local support group was very helpful to me in sorting out which doctors could be the most helpful.
There are many other tick borne illnesses. My child was bitten by ticks, never got the rash, but had weird symptoms over two years. After 9 different doctors, got to an LLMD who tested for the Lyme coinfections in addition to Lyme. Tests came back positive for Babesia and Bartonella, not Lyme. Three months of treatment and we are seeing improvements. However, diagnosis is primarily by clinical knowledge as tests often produce false negatives for many different reasons. So a "Lyme Literate Medical Doctor" is key to the evaluation.
Best wishes in finding an LLMD to do your diagnosis.
Posts: 170 | From New Jersey | Registered: Jun 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
My punch biopsies of skin also show inflamation of unkown origin= tick born illness.
Theses biopsies can detect pretty much everything under the sun, but not TBI's.
Sorry about yor situation, but like you, I would say that putting 2 and 2 together, i.e. healthy until bite would = some Tick borne illness.
You need to post in seeking a doctor as others have advised. You will get proper testing and diagnosis.
Goood luck to you, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
Thank-you for all of your quick replies. As far as a spider bite, or tick bite I am not sure because the biopsy is suggesting no bacteria is present as well as the recent blood cultures that were just taken. I am not aware if any blood test is specific for certain bacteria of a tick or spider bite. My personal research thus far indicated that Lyme Doctor specialist look for and test for areas of medicine that are not standard. I believe this is the only way to receive correct treatment or I can be on another merry go round of doctors for the rest of the year and still be hearing " try this, or not sure, or non specific, or just take pain medication.
Posts: 9 | From Economy PA | Registered: Jan 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
It would be a good idea to get a picture of your rash or whatever is left of it. If it is/was a bullseye rash, that in itself is diagnostic of lyme disease.
Lyme tests are not very good. They are testing for your immune response, not for the actual organism. It doesn't sound like you've had testing for other infections either. If it was a tick, you could have co-infections that sometimes get passed with a tick bite.
If it was another insect, perhaps some other infection was passed. Are you having other symptoms besides your arm pain and weakness that could be attributed to your bite?
Most LLMD's (what we call lyme literate medical doctors) are good at differential diagnosis. Meaning they usually look for other diagnosis besides TBI's that could be causing your symptoms.
Not sure what a lyme blotter test is but I think you might mean a Lyme Western Blot? Do you have the results of that test that you can post here for us to look at? If the test was done immediately after the bite or early on, your body may not have had a chance to mount an immune response yet.
Most lyme doctors use IgeneX because they are a specialty lab for tick borne illnesses and evaluate the individual bands rather than the overall CDC result.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
bettyg
Unregistered
posted
welcome, but sorry, i/many others here with severe neuro symptoms, can NOT read long solid block text. would you be kind enough to break up your posts above and elsewhere using my guidelines below?? then we could read and offer advise too
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!
IP: Logged |
quote:Originally posted by TerryK: It would be a good idea to get a picture of your rash or whatever is left of it. If it is/was a bullseye rash, that in itself is diagnostic of lyme disease.
Lyme tests are not very good. They are testing for your immune response, not for the actual organism. It doesn't sound like you've had testing for other infections either. If it was a tick, you could have co-infections that sometimes get passed with a tick bite.
If it was another insect, perhaps some other infection was passed. Are you having other symptoms besides your arm pain and weakness that could be attributed to your bite?
Most LLMD's (what we call lyme literate medical doctors) are good at differential diagnosis. Meaning they usually look for other diagnosis besides TBI's that could be causing your symptoms.
Not sure what a lyme blotter test is but I think you might mean a Lyme Western Blot? Do you have the results of that test that you can post here for us to look at? If the test was done immediately after the bite or early on, your body may not have had a chance to mount an immune response yet.
Most lyme doctors use IgeneX because they are a specialty lab for tick borne illnesses and evaluate the individual bands rather than the overall CDC result.
Terry
Hi Terry I do not have the last lyme test in my hands but it was the Lyme Western Blot. I noticed the rash the last week of August so I assume this is when I was biten this last lyme test was October 5 2008. The other two were in the middle of September. I saw a derm doctor who took the last biopsy December 17 2008. This doctor did take a photo of my arm which I do have. Keep in mind this rash is now 6 months old and after anti biotics. It still itches from time to time. If you tell me how to get the photo up I will enlarge it and send it. Thank-you for all your help and excellent advice. Mechelle
Posts: 9 | From Economy PA | Registered: Jan 2009
| IP: Logged |
posted
Do you know which lab did the Western blot test? Some labs are better than others.
Alo, there are lots of reasons why people don't always test positive, even though they really are. Like people haven't made enough antibodies yet, or they're tied up in antigen-antibody complexes, etc.
That's why these diseases are treated clinically, meaning based on history and symptoms.
Many here do not think 200mg/day doxy is enough. Many do 200mg 2x/day initially.
Sorry about the medical run-around. It's disgraceful. That's why we need to go to Lyme-treating docs.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
quote:Originally posted by Robin123: Do you know which lab did the Western blot test? Some labs are better than others.
Alo, there are lots of reasons why people don't always test positive, even though they really are. Like people haven't made enough antibodies yet, or they're tied up in antigen-antibody complexes, etc.
That's why these diseases are treated clinically, meaning based on history and symptoms.
Many here do not think 200mg/day doxy is enough. Many do 200mg 2x/day initially.
Sorry about the medical run-around. It's disgraceful. That's why we need to go to Lyme-treating docs.
Hi Robin yes the lab was Lab Corp that ran the western blot test. Also, I had just finished the Doxy, was on Doxy the with the other two Lyme test which were Elisa test. Interested in your thoughts on this,Mechelle
Posts: 9 | From Economy PA | Registered: Jan 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Wink]](wink.gif)
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. 
Printer-friendly view of this topic