posted
Hi everyone, I am not sure if I have Lyme Disease or not but I have been sick for over two years. I have peripheral neuropathy, my gait is spastic, balance poor and I am in terrible pain in my arm joints. I have been diagnosed with spinal cord contusion (not) RSD (not) MS (not), Cervical Myleopathy and Stenosis (not). I was about to have neurosurgery on my neck but the neurosurgeon wants a Rheumatologist to check me first. I am in pain management. My mind and thinking is terrible and I spend most of my time in bed. I have chills and sweats - which I thought were the meds. I had two brain MRI's which showed 2 white lesions that grew from the size of peas to silver dollars. The radiologist said these were possible "lyme lesions". The neurologist said it was nothing. I had only had 1 blood test 2 years ago in the very beginning which was negative so I have never been treated for lyme. I met a wonderful person a few days ago who took one look at me and swore I have advanced lyme - she is being treated for it. I know I will be diagnosed with fibro because you can see the knots on my arms. I am also having skin and mouth problems. I thought these were from the meds. I have terrible itching all over my body especially my flank area - this started a couple of months ago. I have linchen looking like things all over. I have erosive lichen planus in my mouth and it peels and erodes inside my cheeks. I am on so many meds. The neuro says I have post spinal cord neuropathy but other neuros say I never had a spinal contussion. I also had evoked potentials and they were abnormal in my legs and my right eye. I just feel so sick - I sleep all the time and the pain is getting worse every day. I did have a rash on my arm after an epidural injection last summer but is was just a big round rash - not a bull's eye. I live in Delaware County, Pennsylvania. Can anyone give me some advice or info? Thanks. I am also near Chester County.
Posts: 3 | From Pennsylvania | Registered: Feb 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please go to Seeking a Doctor section.
Post your city and state.
I would hold off on any surgery until I had seen a Lyme Literate Medical Doctor.
However, that is just me and my very humble opinion.
The myraid of neurological symptoms plus physical symptoms
Could all be Lyme and/or co-infections.
You need a Western Blot through Igenex, Ca.
Many here have white lesions on their brain.
Remember, Lyme is a clinical diagnosis.
You live in an endemic area.
Better to see someone who specializes in Tick Borne Diseases.
Welcome to the board.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Welcome to the group, Mary Anne. I'm reposting your message and breaking it up for those who can't read large blocks.
Hi everyone,
I am not sure if I have Lyme Disease or not but I have been sick for over two years.
I have peripheral neuropathy, my gait is spastic, balance poor and I am in terrible pain in my arm joints.
I have been diagnosed with spinal cord contusion (not) RSD (not) MS (not), Cervical Myleopathy and Stenosis (not).
I was about to have neurosurgery on my neck but the neurosurgeon wants a Rheumatologist to check me first.
I am in pain management.
My mind and thinking is terrible and I spend most of my time in bed. I have chills and sweats - which I thought were the meds.
I had two brain MRI's which showed 2 white lesions that grew from the size of peas to silver dollars. The radiologist said these were possible "lyme lesions". The neurologist said it was nothing.
I had only had 1 blood test 2 years ago in the very beginning which was negative so I have never been treated for lyme.
I met a wonderful person a few days ago who took one look at me and swore I have advanced lyme - she is being treated for it.
I know I will be diagnosed with fibro because you can see the knots on my arms.
I am also having skin and mouth problems. I thought these were from the meds.
I have terrible itching all over my body especially my flank area - this started a couple of months ago.
I have linchen looking like things all over. I have erosive lichen planus in my mouth and it peels and erodes inside my cheeks.
I am on so many meds.
The neuro says I have post spinal cord neuropathy but other neuros say I never had a spinal contussion.
I also had evoked potentials and they were abnormal in my legs and my right eye.
I just feel so sick - I sleep all the time and the pain is getting worse every day.
I did have a rash on my arm after an epidural injection last summer but is was just a big round rash - not a bull's eye.
I live in Delaware County, Pennsylvania. Can anyone give me some advice or info? Thanks. I am also near Chester County.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Me again.
Again, welcome to the group.
I'm sorry you had to find us, but glad you did.
I'm not diagnosed yet either, but I have an appointment with an LLMD in about 2 weeks.
I've had a lot of weird symptoms too, seen a lot of doctors and pretty much been blown off by all of them.
I'm a stay-at-home mom, so all my symptoms are in my head, I have panic/anxiety disorder, need a life, am just seeking attention. I don't know if you've heard any of that from your docs, but it's annoying.
Anyway, I'm in York County, which I know isn't really close to where you are. But I'll PM you with my doctor's info.
Hope you find what you need here!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Good luck Starfall with your Doctor's appointment.
I am seeing my pain management doc tomorrow who is
also a physiatrist. I am going to ask him about
ordering tests. I have to be evaluated be a
rheumatologist on Monday. I am going to ask him
also.
PS: Thanks for fixing my post.
Posts: 3 | From Pennsylvania | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi and welcome,
I sent you a private message.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Please look at the list of support groups on this website and find one near you. Would be good if you contacted them for local help with your situation.
Sometimes lyme does damage that needs to be corrected by surgery. Other times, lyme treatment will take care of the problem. Not clear which one of these situations applies to you. Would be good to see a lyme doc first, if it can wait a while longer.
Unfortunately, the other doctors you are likely to see will not consider lyme as a possibility, will not do a complete differential diagnosis. This means you will probably be wasting your time with the rheumatologist.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
star, GOD BLESS YOU for breaking up her entire post for us neuro folks who can not read or comprehendl long, solid blocks of text with no paragraphs.
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" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. 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.
Betty's POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. 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. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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posted
Thanks so much for all your help!
Posts: 3 | From Pennsylvania | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
MaryAnne,
I know all this can be very scary but, with knowledge is power.
While this may or may not be lyme, you need LLMD (who is ILADS-educated) to properly assess you for lyme and other tick-borne disease (TBD). This is why:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
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!
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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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