posted
Dear Friends, Deep down for many of us suffering Lyme induced multiple sclerosis, we need the support of neurologists. Neurologists are very important as they specialize in understanding the Central Nervous System (CNS). I would like to share some quotes of 4 different ``Medhelp'' Cleveland clinic neurologists which prove that they are starting to open their eyes to the reality that LD mimics MS. Now they have not come nearly far enough, but they will be with us shortly. It think that it was ``The Weather Girls'' who said, ``humidity is rising, barometer is getting low;'' and this is the case with LD. Awareness is coming more widespread as the spirochetes make their way into the American Family home often wiping out entire families. I have compiled this information for those of us who have second thoughts about the LD-MS connection whether it is just an imitator or one in the same thing is really is unimportant as it will not be solved nor proven today. Some may realize that they actually have MS and for this possible cure I would like to provide a link and from thence to go into these good quotes.
USC multiple sclerosis vaccine begins $3.5 million clinical trial
QUOTATIONS:
``You describe a very common problem with
diagnosing and treating lyme disease. If a
patient presents after a tick bite in a lyme
endemic area, treatment should begin immediately
with antibiotics (amoxicillin or Augmentin for
28 days) and lab tests should be ordered to
confirm the diagnosis only. However, in 30-50%
of cases the tests can be negative despite true
disease.''
``Borrelia burgdorferi
(the spirocete that causes Lyme disease) is
immunosuppressive and inhibits antibody
production and thus the tests often appear
negative until treatment has been started and
reduces the affect of the Borrelia burgdorferi.''
``Lyme disease remains a clinical diagnosis
and requires a clinician sensitive to the
devastation this deisease can cause.''
``There are
many neurologic effects of Lyme disease, if it
causes an encephalitis/meningitis (brain
infection, brain covering infection).''
``It is
important to keep in mind that Borrelia
burgdorferi can reach the nervous system within
12 hours of a tick bite, and treatment should be
started early.''
``Some diagnostic tests used for
Lyme disease patients include MRI brain (to
evaluate for encephalitis) Lumbar puncture (to
evaluate for meningitis) EMG (to evaluate for
peripheral nervous system involvement) SPECT
scan (to evaluate for vasocontrictive disease
that can lead to increased presure, headaches,
and cognitive/psychiatric problems).''
``Chronic
lyme disease is contributed not only by
untreated or under treated disease, but also by
coinfections that can occur with tick bites
including Erlichia, Q-fever, babesiosis, Rocky-
mountain spotted fever. I hope this has been
helpful.''
``One must be careful though as there are several
disorder including Lyme that can mimic MS, and
one should be evaluated for these before the
diagnosis of MS is established ie other spinal
cord disorder or growths, sarcoid, infection,
among others.''
``It is true that Lyme is difficult to diagnose and lab tests are unreliable. The best way to diagnose it is through a clinical diagnosis based on your history and symptoms, which I do not have to the fullest extent.''
``I cannot comment on whether you had Lyme disease or not as I do not kow how they clinically diagnosed it, or have any results of testing. If nerves were damaged during the course of the disease ie before treatment , it may take a relatively long time (weeks to months) for nerves to grow back/repair.''
``This may explain the residual symptoms. Its not clear whether you had an MRI scan - this may need to be done to detect any spinal cord lesions causing difficulty in urination and/or signs of spinal root compression. Lyme can affect the spinal cord root (polyradiculopathy) and this may be causing your limb pain, an EMG would help to confirm a peripheral nerve or root problem.''
posted
When I watched "Mystery Diagnosis" on Discovery Health, the teenager who was EVENTUALLY Dx'd with Lyme was put on ABx therapy for 1 1/2 years before she got back to normal...
So, when they say it may take weeks or months, some folks may actually believe that it can be alleviated in such a short time, when in fact, it may take much longer... Posts: 47 | From New Mexico | Registered: Jun 2006
| IP: Logged |
LostCityAgent
Unregistered
posted
Well yes. Nerve damage is no joke and if it has gone on for a long time then this problem will take time to fix. That seems logical.
As I said; they are no where near where they need to be but at least some of them are stepping out of complete ignorance and denial.
I have parethesias of the feet of a today. Before it was just in my hands.
I used a vibrating foot massager and now, my feet will not stop vibrating.
Hmmmm.
Been on abx (Doxy, 300 mg) since early May. So nearly 2 months.
IP: Logged |
I've had a couple of tentative MS diagnoses over the years -- particularly when I was mid-stage in the illness and had a lot of neuro involvement -- and I know how scary it is.
The vibrating thing used to be almost constant with me.
There IS encouraging research though that (at least in some cases) treatment for Lyme can heal the lesions on the brain -- and even reverse demyelination sometimes.
I'm so sorry you are going through all this. I wish there were more lyme literate neurologists out there -- as it is, our LLMD community has to address issues that could/should be referred to specialists (such as neurologists, ob/gyns, speech pathologists, even mental health providers etc.) assuming those specialists were versed in Lyme. Sadly, that day remains far away, just yet -- but some progress is being made.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
John, I've been reading the neurologist's posts there for almost a year, and he has NEVER said anything like this before now.
Hikerunner composed a wonderful query asking the neurologist about Lyme, and it must have brought out the best in the doc. (I wonder if the doc didn't copy and paste it from somewhere else, as he's never had that opinion before.)
The doctors there continually dance around the Lyme diagnosis, and have missed giving accurate Lyme advice EVERY SINGLE TIME.
People go to that forum with all kinds of neurological problems, after getting the runaround from their own doctors. It is heartbreaking to read the symptoms they are enduring, looking for answers, and never finding them.
There are some people on that board who are bullying me.
When I counsel a person that their symptoms fit the pattern of Lyme Disease, there are several posters who make snide remarks that I think "everything is Lyme." Well yes, I do skip over the topics that I have no experience with.
I usually advise people to post a query at LymeNet, where there are hundreds of experienced Lyme patients who can answer their questions and direct them to the right information.
There are so many people here who have been so kind and patient with the newbies, getting them headed in the right direction.
Because the doctors aren't doing their jobs.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
LostCityAgent
Unregistered
posted
Yes Carol, I too have had the same experience over there. I was literally attacked.
I am siding with the idea that these two neurologists are doing their best.
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!
![[Eek!]](eek.gif)
Printer-friendly view of this topic