I've been seeing my primary for a few months now for periodic muscle weakness in my right leg and arm. I also have tingling sensations, twitching, and loss of balance-walking into things.
I have had a clear MRI of the brain and spine and will be having a lumbar puncture from a Neurologist as both Doctors suspected MS.
To rule out other possibilities the Neurologist ran TONS of bloodwork to rule out other posibilities. ANA did come back at 630 which is high and by b-12 was borderline low.
ELISA was negative.
I went to primary today with results and to my surprise he ordered a Western Blot through Quest. He said let's just see what this shows before I send you to a Rhuemie because he suspects lyme.
I saw him in 2002 with a weird bug bite rash but he said it was more like a spider bite and I was 32 months pregnant so he didn't want to put me on ABX.
Last year I was diagnosed with IBS- diarea prodominant. It was horrible for months. Many tests were done to rule out other disease. This all started after being on Prednisone for a month from a severe case of Poison Ivy. Left hip pain started with this.
I also have a murmur, minor chest pain (more like a fullness) and fluttering.
Anxiety attacks come VERY strong when my Neuro Symptoms flare (I actually had myself convinced I had ALS because I drop things and have heavy muscles/weakness) But Als is not intermittent like this.
So know that you know my story (sorry it's long-but there's so many symptoms and minor complications. What should I do next if the Quest test is negative? If it's positve I already have a LLMD that I could go see, but I'd have to leave my current Primary- So far he hasn't been a total Duck about this.
Posted by Annxyz (Member # 9097) on :
I would get an Igenex test . The symptoms sound VERY MUCH like lyme.
I would also try to take abx ASAP , as long as the doc will prescribe them .
Do you feel sick or fluey ? If you do , then I doubt you have MS .
I had a similar experience and MS ruled out . From day one I have felt sick all over, like a flu infection.
MS does not usually start with flulike symptoms. Lyme can mimic MS !
Posted by panicbegone (Member # 10760) on :
Wow Erin
You sound SO much like me. I have ALL The same symptoms (plus like 20 more than your list) but am also seeing a neurologist! He suspected MS but my MRI was clean. I have the anxiety big time also! its like general anxiety but pretty severe.
Also, i had a negative elisa test also. I dont think relying on a WB Quest test is a good idea but doesnt hurt to see the results.
Ive been told i have CFS and Fibro but my symptoms are out of this world. My legs are week, my body hurts , i feel like im on a moving boat, my balance is totally off and i cant walk right anymore, i have anxiety, heat intolerance, exhaustion, cognitive problems, etc etc.
Let us know your test results and keep us posted! Feel free to send me a message privately if you want. I dont always go back to threads more than once.
Posted by ErinP (Member # 11300) on :
No, I don't really feel flu like ALL THE TIME just very fatiqued when I have these Flare ups. Is Lyme intermitent like that?
I have been on Macrobid for a week now for a UTI and I haven't experienced any Herxing. I'm only on it for 2 more days....
Should I still go for the spinal tap? At least I'll know the Quest WB results befor that. My DR. wouldn't sign for Igenex yet...I'm sure it has something to do with money or maybe convenience as the lab is right accross from his office. At least he's open minded and not ruling out Lyme from a neg ELISA..
Posted by Lou B (Member # 64) on :
Erin,
Here is some information that may help you: Lyme disease is known as the great imitator because it imitates so many other diseases and medical problems and this is sometimes confusing to the average medical doctor. Also, the tests for Lyme disease are unreliable and many people who actually had Lyme disease received false negatives on tests that are currently available for Lyme however a positive test should be taken seriously as false positives are rare.
A rash (sometimes described as a bulls eye but the rash can take on any shape) occurring within days or weeks of a bite by an infected deer tick is a positive symptom of Lyme disease. The rash occurs in approximately 50% of the people who get Lyme disease. Anyone who has been bitten by a tick or who develops symptoms of Lyme disease should be concerned!!!
The best diagnosis is done by a Lyme Literate Medical Doctor (LLMD). This is a doctor who is highly experienced in the diagnosis and treatment of Lyme disease.
If you are looking for Lyme Literate Medical Doctors (LLMD) I suggest you do the following: For Online Doctor Referrals, please click on the following URL for the Lyme Disease Association Doctor Referral page: http://www.lymediseaseassociation.org/Doctor_Referrals.html
You may also locate a LLMD in your area by posting in the Seeking a Doctor forum. http://flash.lymenet.org
Much information about Lyme and other tick borne diseases is available on LymeNet at: http://www.lymenet.org
If you need additional information, click on the "On-Line Library" topic on the left menu bar. You can find a complete and very comprehensive set of Lyme symptoms, testing, diagnosis and treatment information at: http://www.ilads.org/burrascano_0905.html Note: This is Dr. Burrascano's "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses"
My daughter had Lyme disease for over 10 years before she was correctly diagnosed and began treatment. She has regained her health and is symptom free. Her story is at: http://www.angelfire.com/nj/lorib
Good luck, Hopefully, some day soon, we'll beat this disease.
Posted by bettyg (Member # 6147) on :
welcome erin, i'll send you by PM, private message, my 46 pages of newbie links/advise.
look for detailed info on IGENEX blood tests that someone else mentioned above.
you mentioned IBS, i found out last year thru food allergy testings i'm allergic to:
gluten ... wheat and rye;
casein ... cow's milks, cheeses, egg whites, and garlic.
IBS is normally a sign of gluten intolerance/CELIAC disease. info about that is in what i'm sending you too.
lou b, can you use the tinyurl on that link causing this to go SUPER wide. not able to read it even using going to bottom to read PRINTER FRIENDLY VIEW! thanks my friend.
Posted by groovy2 (Member # 6304) on :
Hi erin
Lyme and co infections symptoms can come and go- it can do this for a perty long time until it wares your body down -- and then the symptoms mostly stay and get worse--
Some folks dont get the Flu type symptoms but it is perty rare--
Watch the Lyme video I posted here -- the man in it has lyme and basicaly feels good but the germs attacked his knees- so bad he had to have a knee replacement
He is the only person I know that did not really have the flu type feelings but he is proof that it dose happen --
Herxing-- some folks dont herx-- but the vast majotity do --
For some reason it is usually men that dont herx --about 20%
I did not herx until about the 6th month of treatment and then BAM --
Hammered me like a Armiadillo on the Freeway--
You do sound like you have Lyme and or co infections--
The tests for lyme are Very Poor and perty much Useless at the moment--
Every test that I have ever take comes back super Clean--
Ducks tell me I must be super man to be this healthy- and clean --
My Igenex tests came back IND-- but 20 yrs ago I had a picture perfect lyme bruse on the back of my leg weeks before I started getting sick--
So I have Zero doubt that I have both Lyme and Babs--
The spinal tap is not recomended for DX of lyme ect--
I dont think anyone on LN that I know of has gotten Any Answers form getting a ST --
From you post I gather that you have only been on ABX for just a few days and most likely a LOW dose--
ABX at the Standard Dose(LOW) will kill many types of germs --Not Lyme tho --
Lyme is perty much a super bug once it gets going--
I hope this helps you--Jay--
--
Posted by ErinP (Member # 11300) on :
Thanks for all the helpful info!!!! I'm going to wait and see what Quest results come back as and I'm going to go for the Spinal Tap-this isn't for a diagnosis of lyme, but more to see if there are bands in the fluid commonly seen in MS. Like how antibodies aren't always found in Lyme tests, MS scars aren't always shown on MRIs. Why is nothing ever definate in these areas? You would think by now medicine would have a clear cut answer for diseases.
I'm not quite convinced it's Lyme yet myself, so I do need to rule out MS since they're both a clinical diagnosis.
As for the IBS- it's been under control lately- I was tested(not fun tests!) for Chrohns, colitis, Celiac, allergies, hepatitis......etc all normal/neg.
Posted by Beverly (Member # 1271) on :
Hi Erin,
You have been given wonderful advise and information, there is nothing I can add, just wanted to drop by and say Hello and Welcome.
Keep us posted and hang in there.
Nice to see you posting Lou B.
Huggss to all....
Posted by tory2457 (Member # 10384) on :
Welcome,
[QUOTE] I also have tingling sensations, twitching, and loss of balance-walking into things
I too, have those same symptoms: and I do have an MS diagnosis....with NEVER getting a spinal tap.
You might want to read about the debate on needing a spinal tap for a diagnosis.
(NIH) National Institue of Health NEUROLOGICAL ASPECTS OF LYME DISEASE
NIH GUIDE, Volume 22, Number 5, February 5, 1993
PA NUMBER: PA-93-49 P.T. 34 Keywords:
Infectious Diseases/Agents
0715038
Epidemiology
Disease Model
Pathogenesis
Immunology
National Institute of Neurological Disorders and Stroke
National Institute of Allergy and Infectious Diseases
PURPOSE
The National Institute of Neurological Disorders and Stroke (NINDS)
and the National Institute of Allergy and Infectious Diseases (NIAID)
invite research grant applications seeking support of a wide spectrum
of research directed at generating improved knowledge concerning Lyme
disease of the nervous system.
Lyme borreliosis is a multi-system disease caused by the spirochete
Borrelia burgdorferi. It may affect skin, joints, heart, eye, and
the nervous system. Reported neurological consequences of Lyme
borreliosis may range from minor to serious. The infectious vector
is a tick commonly harbored by many sylvatic and domestic animals,
but the principal reservoirs of the adult infective tick are deer and
field mice.
Well described neurological disorders, meningoradiculitis and chronic
neuropathy in patients with acrodermatitis chronica atrophicans, and
an array of central and peripheral nervous system complications of
Lyme disease have all been found to result from borrelia infection.
Between 1982 and 1990 over 30,000 Lyme borreliosis cases were
reported in the U.S.
Reported neurological manifestations of the disease include one or
more of the following: meningitis, cranial neuritis,
I personally was always so thankful my neuros at the time didn't make me go through a LP.
Please remember that Lyme and MS is a clinical diagnosis..
After many years, and also taking a CRAB drug, I am now treating the cause of my MS with antibiotics, and not just the symptoms.
I was tested through IgeneX, and although I had a negative test result (CDC criteria), I have Lyme specific bands that are positive. And my LLMD clinically diagnosed me, and I began antibiotics...
Good luck and the best, tory
[ 03. March 2007, 03:52 PM: Message edited by: tory2457 ]
Posted by ErinP (Member # 11300) on :
I'm a little confused Tory.. Are you talking about the debate of a spinal tap for diagnosising ms or lyme? I'm doing it for MS. What are CRAB drugs?
Posted by Doomer (Member # 11013) on :
Why is a LP (lumbar puncture) spinal tap indicated if you have a negative MRI.
If you had a questionable MRI for MS then it would be indicated to do a LP to confirm MS dx.
Do a lot of research on LP's, doctors will tell you that they are nothing to worry about but others who have been through the experience will tell you otherwise.
Posted by Boomerang (Member # 7979) on :
Oh my gosh, Tory....that was TOO LONG. jmho.
Lou, so glad to see you back. Hope you are well.
Best wishes to all.
Posted by tory2457 (Member # 10384) on :
Boomerang,
Sorry you found it too long, but because it explains finding in the CNS I found it worth reading. Especially because it comes from the NIH website..
ErinP:
Yes, If I am convinced because of my reading and searching that a spinal tap is an iffy test at best to diagnosis MS. Neuros are even questioning spinals at this point, many years later.
I say that because I have been diagnosed, and never (thankfully) was subjected to a spinal.
As for the CRAB drugs: Copaxone- Rebif-Avonex-Betaseron
I must say again MS like Lyme is a clinical diagnosis.