I know three gals with MS, that I know, if they were to be tested for lyme, that they would have an answer.
It's like they want to either complain about the MS or completely be in Denial.... or as you said... love their dr.s' and therapists.
Hard to understand. Wouldn't you want to try and get better no matter what?
I first was told I had MS... I said.. nope.. don't have it, lets keep looking.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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As I really don't think I have a true lyme either (thus my name hadlyme).
I think I have babs or bart... and maybe I got it from a blood transfusion in 1981.
Still searching for really 'what' I have. The 'lyme' name comes closest to what I feel is going on in my body.
Still think there are many unanswered questions out there.
But, unlike the MS women I know.. I'm willing to keep looking to what is wrong with my body.
Hope that answers your question Radfaraf.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I have 2 friends with MS... one of them I think I can convince to get tested for lyme... as he is in the woods all the time fishing etc.. in connecticut
the other I think will be like this lady you talked to because he is like the spokesperson for MS support rallys and such and for a person that is so deep into it it's hard to turn back...
my other friend who I will approach about lyme actually was diagnosed with MS put on meds did terribly on them so he stopped taking them against the doctors advise so I feel I have a chance with this one.. I believe he has lyme... especially because the MS meds made him 10 times worse.
the other friend who is the MS spokesperson has actually seen some improvement on his MS meds so I believe he may have MS for another reason
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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The most stunning is a family of 7 people, all with ALS - what's the chance of that?
But when I mentioned Lyme, the woman was almost shouting at me...they are very protective of their family doctor.
On the other hand, I have a lot of doubts about my wife's Lyme diagnosis. I don't know what to think...
Posts: 822 | From midwest | Registered: Apr 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
sad, sad, sad.
send them this link...finally a neurologist speaks out of the fallacy of "MS" and the "MS drugs"
posted
paul-my dr believes that all MS is a result of a borrelia infection. i think its entirely possible. if im not mistaken MS is a result of an autoimmune problem where your immune system starts attacking the lining of your brain. the standard MS treatment is steroids. steroids lower your immune system so therefore it will weaken the immune attack on the brain. therefore the treatment will "work". that doesnt mean its the correct treatment. the lyme is still doing damage to the brain.
its much like the way ulsers use to be treated. they thought it was caused by diet and stress. therefor improve your diet and your stress level and people would improve. however as it turns out ulsers are caused by...............a......BATERIAL INFECTION! now why did diet and lower stress work on a bacterial infection? it improved your immune system thats why. what is the current treatment for ulsers? flagyl, an antibiotic. i find this so similar to MS.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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quote:Originally posted by radfaraf: How easy would it be for someone to convince you that you didn't have lyme disease?
for me easy enough. i have been treating for 10 months and im not 100% convinced i have lyme. as a matter of fact even after i went to my LLMD appointment and began treatment i went to see an internal md who then referred me onto an infectious disease. i went to see her as well and concluded that their explanations made no sense. internal md's dx was that i was crazy. id dr's dx was some sort of virus that would eventually work its way out of my system. however she said it could be MS...
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
I new I had a bacterial infection in the begining but had no clue what it was... this started with pericarditis of the heart
and they told me it was viral
I said to the doctor I think it's bacterial and he said I would be dead if it was...
what a bunch of horse ****
my first thought was correct. never again will I rely on someones oppinion
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I wonder if some people might get comfortable with the MS diagnosis. It is an accepted and easily recognizable disease, sufferers qualify for disability benefits, they are told that it is manageable with proper meds.
Some lucky people also remain stable after their initial flare and diagnosis, they don't get sicker and they don't get better, they just move on with life.
People have a hard time believing that an infection (Lyme or CPN) can cause such serious debilitating symptoms. The general public and most MD's in America believe that all bacterial infections are easily treated with antibiotics. It would be a scarier world if they opened their eyes and saw what these infections could do.
I would rather have something wrong that was easy to treat, not controversial, treatments all covered by insurance, a diagnosis accepted by all doctors.
One day they will all understand. Until then we have to teach who we can.
Posts: 5237 | From here | Registered: Nov 2007
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quote:Originally posted by sammy: The general public and most MD's in America believe that all bacterial infections are easily treated with antibiotics
funny you say that. my MD father yelled at me that two weeks of abx should be more than enough.
i brought this up to my LLMD who informed me tuberculosis takes many months to treat. i also saw a documentary on leprosy, which is still prevalent in some 3rd world countries, and the treatment for that is...6+ months of antibiotic treatment!
the more i learn about diseases the more i realize how ignorant and conceded the majority of the medical community is.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
Hi all, I have a sister diag. w/MS in 1980. Primary progressive.
She is wheelchairbound, catheterized,has in-home care, and now is losing her mind. Since my diag. w/lyme/co's I've often wondered if she should be tested.
But then I think if she came back positive she would never live thru this nightmare.
Do you think people reach the point where they're too far gone. Should I just leave well enough alone
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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posted
Jola, well if she wants to die thats one thing but if she wants to live she should seek treatment
what i mean is, she very well may have permanet damage and not get much better but with treatment she my not get any worse and also there is always hope for improvement
Scott
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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posted
Imagine this, after many years of symptoms and being dismissed by many medical professionals, you get a ms diagnosis with sensory and strength changes and spots on the mri to prove it.
It's a scary diagnosis, you try the meds, they of course, make your sicker. You try everything alternative you can think of diet, herbs. You don't think of getting better, just happy if things don't get worse or much worse.
Now someone tells you it's probably lyme, really you're happy to give up the MS diagnosis, so check into it.
Let's see, the tests are usually wrong, only one lab in the entire US has an accurate test, and it's not always accurate. Oh yeah, and most in the medical profession don't believe in it, and won't treat it.
But wait, there are some, but they work under the radar, so don't mention their names or they might lose their license. And as you do some research you discover, hey lyme causes all sort of things parkinson's ms, autism, als. Yet none of agencies affilated with these illnesses seems to know anything about this. Oh yeah, and treatments will usually make you much worse before you get better(and how do they know it's not just making their ms worse).
This is what someone with ms discovers with some light research. With deeper research the true picture emerges, but maybe they never get that far, too fatigued, etc.
I do have the ms diagnosis, and do believe it was caused by lyme. But it took me awhile to get there. Treatments have only made me worse, but I've had it a long time.
MS boards also are not supportive of the lyme idea, so if someone relies on that for support, it's another roadblock.
Just a few reasons some have a hard time believing.
Posts: 857 | From northern california | Registered: Dec 2009
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posted
Not 30 minutes ago, before I read this thread, I just told a young friend that her mother's ms could possibly be misdiagnosed lyme. I thought that it would be better for her mom to have a disease that could be treated and get better from than to just keep getting worse. Now I fear that I may have just started a problem.... I wonder if I should tell Maria just to forget that I mentioned anything.
-------------------- I've probably had Lyme since 2003, but started treatment after more tick bites in June of 2010. Posts: 8 | From Eastern Shore Of Maryland | Registered: Aug 2010
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posted
I have had "MS" since 1998. I tried the Avonex (interferon) shots, and felt horrid for the whole 7 years. Took off a couple of years, got interested in Lyme and realized that's what the problem was all along.
So then I started have a ton of neuro stuff, had an MRI and found that there are also a ton of new lesions. So I started Copaxone (not an interferon) shots. My hope is that while I try to figure out the Lyme, it will help keep the demylination from continuing.
I tell anyone and everyone that MS is very often caused by Lyme. One of my dear friends here at work has "MS" and I believe it's Lyme. My mother probably has "Parkinsons" and I believe that's Lyme, too.
Getting people to listen is pretty tough, especially the type of person who believes all doctors know everything. Some people are afraid of it being something difficult like Lyme. MS is an acceptable disease (even if no one knows what causes it).
So when people get confused and ask me which I have, I say both. The Lyme caused the MS.
It's sooooo hard when people are too afraid, sheltered, passive, whatever, to listen. I try to give people information, and let them make up their own minds. That's about all you can do.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
P.S. Dogmom - I love your explanation of why people don't pursue Lyme. I copied it and will use it, if that's OK with you. It's very concise and eloquent.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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posted
"you could probably get a 6 month prescription of minocycline easier if you have acne."
I know someone who has been on doxycycline for 9 years and is on it indefinitely. I know someone else who gets a little rosacea on her face when she goes in the sun, so she's been on doxy for months and they told her she will probably always have to take it.
Of course NOW when she goes in the sun, she gets a horrible doxy burn...
I had relatives who spent a lot of time in the woods, and one died of a heart attack while he had Parkinson's, and another died of Alzheimer's, although several years prior to that, she had a mystery illness for 3 years (ascribed to a slow gas leak) involving numbness and tingling in her arms and legs. She also had bad arthritis--could hardly walk, and her hands would get clawlike.
Now I keep wondering about them. I wonder about lots of people who I hear about or come in contact with now. (And why is it that we laypersons can spot others with Lyme in 5 minutes or less, while most medical practitioners wouldn't recognize Lyme if it bit them on the nose? Lyme is difficult to confirm, but it's not THAT hard to suspect.)
I have a good friend who has neurological symptoms, and has been cumulatively diagnosed with severe depression, trigeminal neuralgia, fibromyalgia and CFS. When I heard about the fibro and CFS diagnosis, I told her she should look into Lyme. She said she was too tired to think about it. I also showed her the Roadback site and suggested that some people with "autoimmune" diseases get better on antibiotics, even if they don't know which infection is causing their symptoms. (Thinking maybe she would try the antibiotics and see if they help, even if she doesn't believe it could be Lyme. But she didn't.)
She was not receptive to my suggestions, and has stopped contacting me, either because she doesn't want to hear it again or is too sick for social contact. I was only trying to tell her that all the doctors who are condemning her to live with her misery for the rest of her life are probably wrong, and she could get better.
Maybe it's very hard to open the door to a dubious and uncertain hope, once you've gone through the difficult process of accepting that there is no hope of a recovery, and your illness is not in your control.
I have gone through so much to accept the Lyme, and then sacrificed so much to it trying to get well. If someone came along and convinced me that I had something else altogether and had been doing completely the wrong thing, I would be devastated that my investment was wasted. It's hard to let go of something you've believed strongly for a long time, especially if evidence can be interpreted to support it.
I suppose it is the same for the people who have made peace with having MS.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
dmc- I found your link really interesting. His theory does not fit well with Lyme or other pathogens being responsible for MS symtoms, but he certainly opens the door to the overall lack of real proff the neurologists have in diagnosing these symptoms. Also I think those in the Lyme community should be aware of other possible theories for symptoms we attribute to Lyme but that may very well have other causes in play.
Posts: 357 | From California | Registered: Jun 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Yes, I actually have appt. for consult regarding this, CCSVI.
Prior to any diagnosis of any illness, I have had few concussions, my upper bones in neck also show torsion, even had umbilical cord wrapped around neck twice in womb.
At this time I'm doing upper cervical chiro stuff. I feel the TBI infections in remission. Have alot of spinal issues still though.
I'm definately not normal...dx MS for 17yrs but in my gut knew could be TBI since at time 4 brothers tested positive for Lyme.
Yes, have tested positive for Lyme, Bart, & Babs. LLneuro thinks I may be manifesting Bart again...I'm hoping not since treating the atlas/axis in neck my feet pain disappears instantly after adjustment.
BTW as a young teenager/woman I was adventurous, daring although goofy,clumsy so had lots of opportunities & so far proof via X-rays of misalignment of these crucial bones.
Maybe I could even have the kinks in a brain's vein. We'll see soon enough.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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