posted
I know the symptoms of these two (and many other) diseases overlap.
I'm seeing a LLMD September 18th. I've already gotten some bloodwork for Lyme and I think general auto-immune (ANA?) tests drawn and sent to them. They do the IGENEX blood draw in the office.
I'd like to see an MS specialist as well. I went to a neurologist, who was very dismissive with me. For one thing, he told me I was too young to have MS. At 24, this isn't even true.
So my question is about the order in which I do things here. I've already made the LLMD appointment. Should I wait until the results are back from that bloodwork? I'm not sure if it's a good idea to see two specialists concurrently.
Especially considering that I've read steroids are prescribed for MS, and that they're terrible for Lyme.
If anyone has some experience with both, or has just been to a lot of specialists, what would you do?
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would see the LLMD, then if you don't have Lyme, see the MS specialist. The Lyme drugs won't hurt the MS, but the MS drugs will hurt the Lyme ... so I'd rule out Lyme before seeing an MS specialist.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
you sure as h377 do not want a MSlable...won't be able to get insurance. MS is NOT A DISEASE. It is a symptom. Multiple sclerosis -multiple hardening- multiple lesions.
Got lesions got MS. Key is to find cause. Find cause, treat cause, stop progression.
Lyme is a demylating disease...thus lyme causes MS is some people, some get lupus, other arthritis, most are labled fibromyalgia (another disease named for symptoms).
Just get to llmd. Your mind will be eased.
Funny. that's the first neuro didn't just lable MS. They are labeling children with MS, here in Connecticut. Go figure.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
The test for MS is very simple. its just a brain MRI, and honestly, even with lyme would not be a bad thing to have done.
Lyme can cause MS. There are people out there with both. Hopefully you are not one of those, but it would not hurt to make sure your brain is healthy. They tested me for MS at age 18, because they simply did not think it was possable I had lyme... go figure.
No matter what, I wish you the best of health and the best of treatment.
posted
MS can occur at any age. In fact, 24 is a prime age for it to occur. It would get a full work-up by a good physician. If you are worried about MS, I would see an MS specialist or another neuro. The one you already saw obviously does not have a clue. I think everyone who has neurologic symptoms should have at least an MRI of the brain no matter what the cause is.
Posts: 340 | From Ohio | Registered: Oct 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I believe that Lyme can also cause brain lesions. If it were me I would see the LLMD and find out his/her take on it.
There are many here who had MS dx before their Lyme one. I hope one of them will come along to give you more info soon.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
May I suggest?
See the LLMD. And do remember.. they are and were.. before Lyme appeared on the scene..
Regular doctors.
They have the advantage of knowing MS and Lyme can be similar.. where a doctor NOT familiar with Lyme wouldn't be as capable.
Even if you don't have Lyme.. most of the LLMD's are good people and excellent doctors. I doubt they will toss you out on your ear if you don't have Lyme.
But I do remember that once.. years ago... I was actually ... wrong!
posted
I have MS (for 20+ yrs) and now am treating the "cause"...which is Lyme Disease!
yes, MS= Multiple Scarring. I have lesions in both my brain and spinal cord...(which btw, are resolving and lightening since I began antibiotic treatment).
this is unheard of in the MS medical community.
I was on a DMD for 2 yrs! It did nothing for me.
Each time I picked up another very pricey prescription which states: "This is not a cure for MS"; and saw the very slick ads in the MS papers from the pharma cos; I scratched my head and began connection the dots!
20+ yrs later,,,,I have Lyme Disease. Do I think that I'm so special? or uncommon? no. I also have a family member with the same story. Diagnosed and on a DMD for a few years; got a lyme test and yes,,,it's lyme!
Sounds like I'm stating that all with MS has LD? no, that's not for me to pledge,,,but I am suggesting that we with MS give a LLMD a chance to look down the "bacterial" road!
I would suggest seeing the LLMD first, and reading all you can to understand LD..become your own advocate; and let your body give you answers...not a Neuro.
Glad you found this site: tons of fantastic, smart, helpful people here.
Ask away, and hopefully we will read about your success story when you are in treatment!
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I am another diagnosed with MS when I actually have lyme. I have multiple brain lesions and abnormal evoked potentials. However, since I recalled a tick bite and a rash, I refused to accept the diagnosis and educated myself (albeit belatedly!) about lyme.
The mere mention of the word "lyme" caused my neuro to go into his condescending routine. He refused to even consider it.
These people GUARD THEIR DIAGNOSES like watchdogs. They are very proud of them!! They don't want to be wrong.
Definitely go to an LLMD first. You've gotten great advice above. The very possibility of lyme will be mocked by an MS specialist; however, an LLMD will be more open minded and knows what he's doing. You might have not only lyme but coinfections; your MS doctor wouldn't know a coinfection from a hole in the head.
Do a search for the word "MS" in subject only here on the medical forum. You could prolly spend the resta the day reading!!
Good luck and welcome!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
my llmd, a past president of ILADS has a DVD from his presentation tying lyme to MS.
It is a symptom with a cause. Mine happens to be lyme...others happen to be clamidia phneumonia st others epstein barr virus, or herpes virus.
There is a cause. After 24 years your immune system doesn't just descide to attack your myelin..something triggered it.
just pursue the lyme md right now....after 17yrs messing with neuros.... Found out lyme. 17 yrs wasted listening to so called MS gurus.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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