posted
Just wondering - I do have both dxs. I've been on LD treatment for about 1.5 years - I've had some improvement - but am still very "off balance" - my walking is like that of a drunk. The MS dx is fairly new and I am not taking anything at yet. My question is - Has anyone in a similar situation. And what did you do????
Posts: 128 | From Brick, NJ, USA | Registered: Dec 2003
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posted
Wondering who gave you these two diagnoses?
Here is something from another website:
"Lyme disease is a demyelinating disease, and is often mistaken for Multiple Sclerosis. Lyme disease should be a differential diagnosis for all Multiple Sclerosis patients.
Patients can go from physician to physician and get multiple diagnoses, including arthritis, anxiety, depression, and neurological problems such as memory deficits and cognitive dysfunction. Cognitive dysfunction involves brain processing and word retrieval, and can present as a brain disorder.
Borreliosis causes a chronic infection of the nervous system and may produce a syndrome indistinguishable from Multiple sclerosis. Fatigue presents as a spectrum that includes fibromyalgia symptoms, all the way to chronic fatigue immune dysfunction syndrome."
Posts: 8430 | From Not available | Registered: Oct 2000
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I call it lyme induced MS. My body has the MS response to lyme. MS is a disease named for a symptom. "cause unknown". Well why would your body if not born like this SUDDENLY go haywire?
Your body is reacting to a pathogen ie: lyme, virus, toxins or all.
This is the explaination I used for my foot surgeon. His reaction was he that never heard of it but that it makes sense.
Some doctors do use commmon sense.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
I can tell you if you take care of the Lyme and focus on that you will improve.. not saying that you will get completely better..
but my father died since he had a dx of MS for 27 years .. his health was a downward sprial and it sickened me to find out that in all of the 71 years on this earth it took a lyme posistive test on me to open our eyes that "hey it might just not be MS.. maybe it is Lyme.." reason being everyone in the family thought I also had MS... no md would tag me with the dx.. TG.. so many tests were run nothing positive.. until my left side started to go dead on me.. neurologist ran a bunch more tests and in it was a ELISA titer.. it was the only thing that came back positive a Western blot was ordered and that too was positive... so the search for answers began.. a new window of hope was now open..
I did my research.. and somewhere in a few months found this board.. i had everyone starting with my children tested.. then dad then mom then my sister... all tests were positive.. then my aunt then my grandmother again positives...now some sousins children have been tested positive for this...
My fathers health was in shams when he started ABX he was bedridden a 10 minute conversation would wipe him out for the day.. he suffered numerous strokes.. and infections. He developed diabtese, and heart disease. no one could help him combat any of this,, until he had his first appointment with Dr. S. he began treatment and after seeing how much I had improved with treatment, gave hope that my father would regain some quality back.. I have to make this short because I will not make it through the post if I don't...
bottom line is my father had more quality back in the last year of his life than he had the entire 10 years leading up to the Lyme DX... he would talk for the 4 hour ride to the LLMD and the whole way back.. asking me the whole time how much longer.. He hated the car rides..he was almost able to walk when his number was called.. the last 3 days were the worse as he caught a cold or pneumonia no one knows really what happened but he choked on chicken while celebrating my sons gaining admission to a university...
his body went rigid and tense and we could not unlodge the chicken from his throat.. by the time the paramedic arrived he was blue and lifeless they brought him back but his brain was dead.. his body was burning up and tehy told us even if they attempted to do what ever they could he would remain lifeless in bed since there was no brain activity.. and nothing to regulate his body temperature.. he would not live long as it would burn him up...
the end result of waiting too long for treatment.. had he been tested and treated many years before he may still be with us.. the turn around was tremendous in a short period of time... but it was too little and way too late the devastation that Lyme had taken on him prior to treatment was too much to reverse..
I would sooner treat lyme and have a chance at life then to accept a DX of MS, where there is no cure and no hope for improvement,, only making you more comfortable as your health slowly leaves...
I apologize for the details in this but there is nothing that will bring back someone who suffered so many years with so little hope.. I only wish we had learned sooner about this horrible disease .. I may have had many more years to share with my father.. but from this I learned to fight for my children and grandchildren that this will never happen to them... please take care of yourself.. again forgive me but this is a very passionate concern that no one should have to suffer if it can be helped..hang in there and keep fighting! Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
I was told I have MS almost 18 years ago. I went along with that diagnosis until I figured it out myself a few months ago. I have Lyme. Lyme has caused my multiple lesions.
So, I'm on abx now and I'm hoping for the best. My balance stinks and my legs are so weak. I need help to get around.
I've read how co-infections are very important to treat with Lyme. I've also read that something like 93% of Lyme patients have Bartonella.
Maybe coinfections is an issue worth looking more into so that you can feel even better faster?
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
There are those who think that LD can cause MS. I'm sure it's a possibility.
What was it that prompted some doctor to diagnose you with MS?
I see a very good LLMD in your area. If you would like more information, please send me a private message.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
There are those who think that LD can cause MS. I'm sure it's a possibility.
What was it that prompted some doctor to diagnose you with MS?
I see a very good LLMD in your area. If you would like more information, please send me a private message.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Kare - My situation is almost the complete opposite of yours.
I was dxed for MS 8 years ago and dxed for lyme this spring.
Based on what I know today and how my MS has progressed, I am convinced that I had lyme 8 years ago. It is unfortunate that the Quest did not pick up the lyme then as my life might be a lot different now.
I am looking forward to get on some ABXs and trying to clean up the lyme and get some, if not all, of my health back.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
JMIC, My opinion of Quest .....just throwing in my opinion here now.. Better to chance a dx to a coin toss... they sux!
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
I have a question for all who posted here. I have lyme. My siter came dwon with bell's paulsy 4 weeks ago. Her brain scan showed nerve demylation. They suspect MS. She is getting a spinal tap in 4 days. I don't belive that she has a tic infection. We both have had many tic bites. What should we watch out for with the MS diagnosis and testings. I need to try and convicne her that this could be from lyme also Thanks
Posts: 582 | From milwaukee wi | Registered: May 2005
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posted
Hi-I have had lyme for 33yrs,dx w/MS 14yrs ago, Lyme/co-infections 6yrs ago. I think the lyme caused the lesions,then I got 3 Root Canals 5yrs ago and the lesions got worse. I never took MS drugs, ins pays for IVIG (liquid Gold) under the MS dx, see if you can get that. Also found out that I have a gluten problem (also can cause brain lesions)
Spinal taps are only 15-20% accurate for lyme Igenex Lab is the best for lyme testing, don't waste your time on Lab Corp/Quest. If I had know about lyme/infected Root Canals years ago, I would not be walking with a cane now. Good Luck
Posts: 315 | From USA | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by johnlyme1: I have a question for all who posted here. I have lyme. My siter came dwon with bell's paulsy 4 weeks ago. Her brain scan showed nerve demylation. They suspect MS. She is getting a spinal tap in 4 days. I don't belive that she has a tic infection. We both have had many tic bites. What should we watch out for with the MS diagnosis and testings. I need to try and convicne her that this could be from lyme also Thanks
Hi John. Your sister's tap might show little...spinals don't often show Lyme. If she's come this far in her investigations, you must convince her to go an IGeneX test. Here's why: part of the standard panel of tests when they do a spinal tap is a Lyme panel.
Based on the "negative" result, they will conclude she doesn't have Lyme. So your sister will end her investigation of Lyme as a possible diagnosis right then and there.
But she has YOU for a brother, so you won't LET her!
Bb does not like to live in spinal fluid...it likes to live in cells.
My own tap had elevated proteins and opening pressure, some other weird numbers, but negative for Lyme.
My brain scan also shows demyelination and 11 brain lesions. I have abnormal evoked potentials (absent cortical responses bilaterally) and enough stuff to convince a coupla ducks that I have MS. However, I have Lyme disease, not MS.
The reason I know that is NOT because I listened to my duck neurologist. It's because I knew how many ticks had bitten me. I even remembered one of them giving me a small rash. So I ignored my duck and had my blood sent to IGeneX. I had many double and triple positive Bb-specific bands, leaving no doubt what the problem was (except in the mind of my neuro duck, who refused to accept Lyme and continues to believe I have MS).
Do not let your sister - or anyone you know - accept an MS label without a full investigation of Lyme, including lab work through a REAL lab!
The tick exposure, the Bells Palsy, the abnormal brain scan are INTENSE red flags for Lyme. Don't rest till you get an IGeneX test from your sis.
Good on you for being such a caring bro!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote:Originally posted by kare: Just wondering - I do have both dxs. I've been on LD treatment for about 1.5 years - I've had some improvement - but am still very "off balance" - my walking is like that of a drunk. The MS dx is fairly new and I am not taking anything at yet. My question is - Has anyone in a similar situation. And what did you do????
HI EVERYONE. I'M BRAND NEW TODAY. MY FRIEND W/ LYME IS EMPHATIC THAT I HAVE IT. MY WEST. BLOT TESTS ARE ALL NEG. DX'D W/ FIBRO. CFIDS. ?MS,?BELLS'S PALSY,OR IS IT LYME?!!!!!!
Posts: 12 | From BOSTON, MA | Registered: Oct 2005
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