posted
In the past weeks, I have met two people who were dianosed with MS. When I discussed the similarities w/ lyme and asked if they were positive it was MS, they both got really mad.
It's like they didn't even want to discuss it...both had endured long periods of being undiagnosed and similar pain to mine, both only had one lyme test and when it was negative they were so ready to go to MS...
Is this weird or what? I would want to get tests from many lyme labs and even then wouldn't touch the MS treatment protochol unless abx for many months failed me....
(I think their docs are driving this anti-lyme movement....)
-------------------- We are spiritual beings on a human journey...
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Maybe they like being sick, probably not.
More likely they feel more secure with medical knowledge that says they are chonically ill but the symptoms can be managed.
Look at how scary the prospect of having lyme is. There is no one treatment that helps everyone. There is a lot of trial and error to get treatment that works.
I cried for days when I relized I had lyme. I cried because I knew there was so little knowledge and I would have to work really hard to find good treatment for myself.
Many aren't as strong as us lymies and can't handle the challange.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I think that most people are under the impression that Lyme is a mild, short-lived and easily cured illness and regard anyone who suggests it might be the cause of their chronic, debilitating illness as possibly crazy.....and at the very least insulting them.
I have had this time and again with people I've tried to talk to about it. They don't want to know, and/or say "I've been tested, adn I don't have it".....even when you try to explain about tests.........forget it. It's not worth the effort in most cases to pursue it with them.
One friend has stopped talking to me altogether. Like me she was dx'd CFS/FM for many years. When I found out I had Lyme, she did not want to hear about it to the point where she did not want to hear from me in any way, shape or form, even though I was not chasing her with it. I would only bring it up when she would bring up her quest to cure herself or find out what was really wrong with her.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
That has certainly been my experience as well. I know two people with MS and neither will get tested for lyme. One loves her MS doctor and really believes in him and she is barely holding her own. The other is willing to talk about it and seems interested. She suffers extreme migrains, has to go to ER in the middle of the night. She was dxed 15 years ago at age 16 and was exposed to ticks on a somewhat continuous bases. Used to take them off at the end of everyday.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Well think of the time tests and money they spent to get there diagnosis as MS then tell them maybe you have lyme.
Nobody likes to have a inklinkg that there wrong patient or DR.
I told a girl {years ago} who I know that maybe her MS wasnt that at all and she said I think the DR's know what there doing with MS.
What makes you a expert was one of her comments.
I just last week heard none of the drugs she was doing are helping now she's pretty much paralized from the waist down.
Maybe she will listen now? I dont live there now in that area where she is so I do hope I get another chance to maybe help her.
Thsi whole labeling diseases symptoms instead of finding the cause is WRONG
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
breaking up for us neuro lymies. Troup, please hit enter in the future to help us all after 6-8 lines of text/subject content. Thanks so much! :-)
quote:Originally posted by Troup Brazelton:
That has certainly been my experience as well. I know two people with MS and neither will get tested for lyme.
One loves her MS doctor and really believes in him and she is barely holding her own. The other is willing to talk about it and seems interested.
She suffers extreme migrains, has to go to ER in the middle of the night. She was dxed 15 years ago at age 16 and was exposed to ticks on a somewhat continuous bases. Used to take them off at the end of everyday.
Tree, I could agree with your last statement. I too believe folks are just getting used to the "wrong misdiagnosis" their MD gave them, and don't want to be tested for another illness, and learn about that too.
I too have share info galore w/fibro/CFS support group members around here. Out of about 30, perhaps 1 did the western blot testing, but that won't discourage me from reminding them to be tested.
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posted
Shame on the medical system. It is amoral. A sin. I have an urge to go to med school.
Change will only come if there is a paradigm shift to where doctors are not God. We must take responsibility for our health, the truth is all that matters here. Not politics or money or egos.
-------------------- We are spiritual beings on a human journey...
posted
Certainty is easier to live with. And as WE know very well, going up against the medical establishment is darn hard.
Posts: 8430 | From Not available | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Dido on Lou
It easier to go with the medical establishment. And also the GP has ,what humanbeing described as ,the God complex.
It's hard for some people to question the pronouncements from "God"
Very sad.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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EtherealGirl
Unregistered
posted
Certainly not everyone with MS has Lyme, but there probably are many who do. MS is a real disease, unlike, IMO, Fibromyalgia. MS can be dx by an MRI.
I have friends with MS who can't walk or control their bodies at all. I would never tell them that they don't really have MS.
That's not to say that they don't have Lyme too, but I do believe in MS, if that makes any sense.
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phil444
Unregistered
posted
I find the same thing true with people who are diagnosed with chemical sensitivity and CFS.
They are so convinced of their diagnosis that Lyme disease is something they just don't even want to hear.
I find this odd, because all of these people were raised in regions with high tick populations.
posted
Do you mean Fibromyalgia isn't a disease because people make up the symptoms themselves, or that it's a disease term that's being used to mask real causative factors (like Lyme, other pathogens, pollution, autoimmune factors, etc.)?
Posts: 244 | From Ottawa | Registered: Dec 2005
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I'm pretty sure Ethereal Girl meant the latter, knowing her from another board -- that FMS is a meaningless name given to real symptoms because the doctors don't know/ don't want to know what is causing it.... and I agree.
-------------------- "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
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posted
Oh, just asking, sorry, I didn't mean to be confrontational. I kind of gathered that she meant it fairly the way she did. It's just where I live there are really people that tend to trash the idea of the real symptoms people suffer (whatever the cause) as if they are just made up, particularly if they recognize their problems as being CFS/FM related.
Posts: 244 | From Ottawa | Registered: Dec 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
an earlier post said "MS can be dx by an MRI." i'm not sure if this is right. my primary doc-who is NOT lyme literate at all wants to rule ms out for me...but she says i need 3 tests: the mri, a spinal tap and something else i can't remember...but i'm not having another spinal tap no matter what and she keeps telling me even if i do get dx with ms she really doesen't think i sholuld go on the ms drugs...i can't believe how pushy she is about this---its as if she knows something she shouldn't or she shouldn't let on that she knows...wierd---but she is pretty good and ssid ms is not an easy, "for sure" dx
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13710 | From new england | Registered: Feb 2004
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I was thinkin of bringing lots of lyme info to the next local M.S walk. Maybe someone would listen....if I didn't get kicked out
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I went to a LLMD last summer who had previously done research on MS patients and she discovered that antibiotics tended to help some. Now she thinks they probably had lyme, not MS, to begin with.
Doctors do need to shift their thinking, but I believe it is hard to undo what you learn in medical school.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 6385 | From Illinois | Registered: Aug 2004
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posted
I had to laugh when I read this. My sister is exactly the same way!
She has been diagnosed with MS and will not even consider the possibility of Lyme. She insists her symptoms are consistent with MS and that's the end of the conversation as far as she's concerned.
I finally had to give up and tell her that I wasn't trying to imply that she might have Lyme but was just trying to point out how similar our symptoms are.
I haven't broached the subject since -- it only causes hard feelings.
I think people just get heavily "invested" in what they have or think they have and get comfortable with it.
To explore the possiblilty of something else is to delve into the unknown -- and we all know how scary that can be!
Posts: 105 | From CA | Registered: Apr 2005
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posted
if your still on speaking terms with them, refer them to a site proving the lyme fraud w/rt to the elisa and wb tests, and to the list of 19 to 29 items that make for a false negative elisa and/or wb antibody test(s).
lyme fraud: http://www.actionlyme.com when here see far left and far right columns. see RICO complaint, and expert witness testimony at sites for u.s.d.o.j., and the fda, respectively.
Posts: 2708 | Registered: Feb 2005
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EtherealGirl
Unregistered
posted
Thank you MM for explaining what I was saying.
It is my understanding, and I say this because I have brain lesions, that there is a certain pattern of brain lesion that indicates MS.
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i saw this somewhere else and thought it would be helpful here...i DO remember dr.L telling me about ms/lyme-but couldn't remember all the details when i posted earlier...
dmc Frequent Contributor Member # 5102
Icon 1 posted 01 March, 2006 07:55 PM Profile for dmc Send New Private Message Edit/Delete Post Reply With Quote I will never willingly have a spinal tap ever again...
Below is from a previous post here but I can't find the link to it.
"Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP).
The medical literature is quite emphatic that MRI does not reliably distinguish between MS an LD because there is too much overlap in their supposedly distinct appearance and location of plaques.
Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination.
In Miklossy's study above, senile plaques stained avidly for Bb spirochetes. Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that LD is causing MS! His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of CNS tissues).
Dr. Coyle has documented the presence of antibodies to Bb in MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of LD. Both MS and LD are associated with sinusitis (Lancet, 1986).
Dr. Leigner has reported a case of LD which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of LD. The symptoms of both LD and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with LD, who previously had been identified as MS, responded to antibiotic therapy. "
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13710 | From new england | Registered: Feb 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Why do they get mad?
I dunno -- how would you react if someone told you you don't have Lyme, you really have MS, or fibro, or CFS, etc.?
I guess the only difference we can point to is that Lyme treatment goes after the cause, killing the microorganisms, while treatments for other syndromes are focused on symptom relief. If we are getting better on antibiotics alone, we have an argument.
Just remember that they have been through the same duck farm that we have.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
quote:Originally posted by lpkayak:
an earlier post said "MS can be dx by an MRI." i'm not sure if this is right.
my primary doc-who is NOT lyme literate at all wants to rule ms out for me...but she says i need 3 tests: the mri, a spinal tap and something else i can't remember...
but i'm not having another spinal tap no matter what and she keeps telling me even if i do get dx with ms she really doesen't think i should go on the ms drugs...
i can't believe how pushy she is about this---its as if she knows something she shouldn't or she shouldn't let on that she knows...wierd---but she is pretty good and said ms is not an easy, "for sure" dx
Spinal tap sounds painful to me too; it was for my late Mom going thru her cancer. Betty
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posted
I know several people like this. Have made one attempt in those cases to suggest that their illness is sometimes misdiagnosed lyme. Not a strong pitch, just a suggestion. Two of these people assured me they had been tested for lyme and got negative results.
They have such a touching faith in lab tests; telling them that lyme tests are not completely reliable.....got me nowhere. And they probably only got the ELISA from an non-specialized lab.
One woman now has a brace on her arm, says she needs carpal tunnel surgery. She looked terrible, worse than I have seen her before and has had myriad problems. I gave her my phone number once, said call if you want to. She didn't. Her diagnosis is fibromyalgia.
You can only do so much. People are not all looking for another diagnosis, just trying to survive whatever is thrown at them in terms of symptoms. It is hard to stand by and watch this while suspecting they could have lyme and aren't getting treated.
However, the situation with regard to treatment of longstanding disease and finding a lyme doc is so daunting, that I really can't push them. If they are not already out looking for better medical care/alternate diagnosis, they will not have the stamina to take on the whole lyme package.
[ 04. March 2006, 01:06 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I was diagnosed with MS 10 years ago and just found out it was lyme 1 1/2 years ago. I am paralysed from the waist down. I am well known in my town as an herbalist and people do not believe me when I tell them that Lyme did thus, not "MS".
I tell them that MS is not a disease but a set of symptoms and it is the only so called disease that is named for its symptoms. Yet still, people every day will say, "oh really, it is the lyme that caused this" with a hint of disbelief and sarcasm in their voice.
I am very adament and clear when I reply "YES". People want to believe what doctors and the establishment tell them. They do not want to step out of the box and their comfort zone.
My neurologist, after seeing my positive lyme test, looked me in the eyes and said " well you might have lyme, but it did not cause your MS. You have MS and possibly lyme too"
I can't wait til I improve enough to walk into her office and walk around town and blow some minds!
Posts: 85 | From Eugene | Registered: Jun 2005
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posted
Earth, You are an inspiration for those who question their diagnosis. I believe that you will walk again with patience and the incredible courage you have had to endure this journey.
I think when the lid blows off this maddness, there will be hell to pay for loss of health and life that many are enduring.
God Bless, Kim
-------------------- We are spiritual beings on a human journey...
posted
I think its for a bunch of different reasons...
When I was VERY VERY ill years ago , and had gone through the gamit of tests and specialists I was originally slapped with the CFS/FMS diagnoses... I got very into alternative treatments, and spent thousands on evey type of therapy you can think of... I hated ABX and thought they were the worst thing a person could do to their body,,,
I was confronted many times by friends and family members who would say "are you SURE you dont have lyme??" And then proceed to tell me a stry about the girl they met who had ALL my symptoms and had it etc etc....
I would find myself getting very annoyed that they would push Lyme on Me b.c in my head I had been tested, been negative, and the times I was "equivical" for Lyme the Dr's told me that that didnt matter..... So I was brainwashed by the Dr's and truly believed I didnt have Lyme...
Then my other thinking was I am WAY too sick to just have Lyme diease....
I thought Lyme was just a disease that caused some joint pain and fatigue...
See thats how ignorant I was about Lyme and I am from CT! Even after my HIGHLY positive Elisa and western blot I was still not convinced.
I remember asking my LLMD " are you SURE its Lyme b.c I was SO sick"
It took lots of time, research and talkign to others to realize how serious this disease was , and of course seeing the difference getting on abx made.....
So long story short: I think people with MS feel the same: They are brainwashed just like I was by Dr's telling them this is what you have.
And its much easier and safer to have MS
MS is a very recognized illness...and people understand it....
anyway..thats my take on it.....sorry for such a long post Posts: 437 | Registered: Sep 2004
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posted
Just wanted to add that not every person with MS has Lyme...many have the correct diagnoses, so please do ot take offense to my last sentence about it being "safer" to have MS...
I know its a debilitating illness...
Posts: 437 | Registered: Sep 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I absolutely agree with you, Christine, that in CT, like other places, the word has been that Lyme is a rash, flu, and joint pains. What is slowly changing this perception around is not the official party line, but the personal stories and news articles of people who have become devastatingly ill.
Keep talking, they can't silence us all. Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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As many on the board know, I have been dxed with both - MS in 1997 and Lyme in 2005
In thinking about MS and my temper, I believe that I get angry at times because I have lost my tolerance with the world. Someimes I feel that 'I have MS, tell heck with the world as nothing else matters.' Not a great attitude and something that I am working to change.
In terms of lyme, another person on this board suggested that I see a LLMD after I described my MS symptoms.
After nonstop testing during the summer, I have settled into a treatment regimen for both. My LLMD and MS neurologist appear to be working together to get me better - or at least not stepping on each other's toes. My MS doctor went as far as to say the last time that I saw him that both diseases are difficult to diagnose.
So I do think that there are some enlightened mainstream doctors out there. However, I would have never gottened to where I am without being persistent in pursuing the different tests.
Marge - I like your idea of bringing Lyme material to the MS Walk. Would you be going to the Clinton location?
MRI - Dr K. told me that Lyme brain lesions tend to be smaller than MS brain lesions. Mine are small.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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What are your thoughts on the double diagnosis of MS and LYme. Do you think that MS is the result of long standing untreated lyme or another untreated bug?
In addition to lyme treatment (abx) How are your docs trying to treat the MS? I am speaking to a friend this week (an angry one) and would love to share your story and treatment protochols.
When i asked her about lyme she said " Oh, I have had lyme before and was treated for six weeks...it went away." Of course I was like YIKES.
She thinks her ongoing suffering is unrelated to lyme infection.
This is a delemma for me since I tend to worry more about peoples problems than they do.
-------------------- We are spiritual beings on a human journey...
posted
I must be a weirdo ...i was actually happy to have the diagnosis of Lyme disease over MS. You can get well eventually from lyme disease..... most don't and just get worse with MS. Go figure! Robin in Houston
Posts: 121 | From Houston, TX | Registered: Mar 2004
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posted
We have a family friend with MS and I remember we were talking about our illness and she said " WOW I have never been THAT sick"
and I remember thinking what do you mean? She is a young woman with a colostomy bag and has deteriorated quite quickly....
So I agree with last poster that at least Lyme is treatable.
As miserable and unfair as it can be, most of us do not have to worry about facing the future in a wheelchair or worse......
Posts: 437 | Registered: Sep 2004
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I have always had a sense that there was a 'rush' to dx me with MS.
My internist sister has MS. The first neurologist I went to based his MS dx on my Quest Lyme test coming back negative and I brain MRI which detected a few lesions.
My second opinion from a MS neurologist confirmed the initial dx.
Since then, I have worked 8 years uninterrupted at a very high level. I have a pretty stressful job and am considered an outstanding performer at work.
A friend of mine, who posts on this board, suggested that I see a LLMD in May 2005. I tested positive for Lyme based on a Igenex Western Blot test, tested positive for some of the key bands on a Stony Point test, and tested positive for Babesia on a Igenex Fish test.
For medication, I am Avonex for MS and Zithromax/Mepron for Babesia. I saw my LLMD last week and am doing a new round of tests for Lyme and Babesia to see how far I have come since being put on the medication.
What I have found during this time is that negative energy does not help regardless of whether I have MS, Lyme, or Babesia.
What do I think I have? I am not sure. What I do know is that the MS diagnosis by mainstream medicine was the easy call to make, particularly based on the limited amount of test information available. Some LLMDs believe that Lyme can cause MS. So it makes sense that I have Lyme which has morphed into MS. I do believe that I am breaking new ground everyday based on what I do and how I do it. To me, that is the most important part of this journey.
Good luck to you and your friend and give me a call.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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posted
Just Me, Of course I wonder about your sister...has she been adequately tested for lyme? -- I hope she hasn't gone over to the dark side of the duck pond...
-------------------- We are spiritual beings on a human journey...
posted
We have a friend that was dx'd with MS a few years ago. I thought he had lyme but he said he had been tested so wasn't interested in being tested again.
His dr told him on his last visit that he thought he had been misdiagnosed and that he didn't have MS. He didn't have an answer for him on what he did have though.
After our friend told us this we offered to pay for his lyme test so he had it done. It was positive. Then he tells us that he had 2 positive elisa tests years ago but when the western blot came back negative the drs dismissed it.
He is very sick now and can't work. I just think it's such a shame that we have to be misdiagnosed so often. He's very confused about what to do now. I think he has finally decided to see an LLMD. Just wanted to share this story with you.
Sapphire101
Posts: 495 | From KY USA | Registered: Dec 2004
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