posted
A close family member has been recently diagnosed with MS.
Several things about this send up red flags for me; She was diagnosed with relapsing/remitting MS despite having had only one "episode" (started with neck pain, headache, and numbness on one side of her body) and being 50 years old at the time of diagnosis. She only saw ONE neurologist who immediately diagnosed her based on lesions seen on MRI and "positive" spinal tap results and then put her on daily shots that cost >$5000 per month.
She is under the impression that the spinal tap results are, in her words, "100% proof positive of MS".
I am under the impression that Lyme can cause the same spinal tap results as MS, and the same white matter brain lesions seen on MRI. I also know from my extensive reading that Lyme is listed in the differential diagnosis for MS and should be ruled out (particularly in an endemic area, likE where we live) BEFORE a diagnosis of MS is made.
As far as I know, she was never even tested for Bb infection.
I'm trying to tell her as gently as I know how, that she needs to get a second opinion. I think it's particularly unlikely that she and I would come down with TWO TOTALLY DIFFERENT neurological diseases (that present with similar symptoms) at the EXACT SAME TIME. I have a feeling she is getting irritated with my question-asking and passive suggestions that she get tested for Lyme.
Does anyone have experience in dealing with this kind of delicate situation? I know *I* wouldn't accept a diagnosis like MS without seeking at least a second, and probably a third and fourth opinion. How do you deal with a family member who puts 100% of their trust in the medical establishment?
Posts: 156 | From Virginia | Registered: May 2011
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posted
Can you get her to watch under our skin many people in it say they were told they had MS. On the CANLYME website there are articles link Lyme and MS you could show her under research.
Posts: 131 | From ontario | Registered: Oct 2010
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I have a newbie question... isn't MS basically a catch all name for those symptoms (lesions on the brain, etc)? So, actually, something causes these things that they haven't figured out? My brother was also diagnosed with MS, but we're not very close, and he's not very talkative, so I don't ask questions. I've also wondered if his MS is actually some form of Lyme disease. He had terrible migraines as a child. My mother also had terrible migraines during that same period. She thinks she had a bullseye rash at one point in time but the doctor ignored her. Which is actually very sad since we're in Minnesota - I mean, the woods are just crawling with ticks and we used to camp out and hike through the woods a lot.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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JeniferM, yes it is a catch-all. I have read that as many as 1 in 10 people diagnosed with MS actually have something else. Also, there are many studies linking MS to positive serology and/or CSF testing and cultures for borreliosis.
As far as I know, they "don't know" what causes MS but acknowledge that it *could be* bacterial, viral, etc. I've seen studies that link the geographical and seasonal distribution of MS and Lyme Disease.
I find it strangely suspicious that she and I are having similar issues at the exact same time. When both live in highly endemic areas where cases of Lyme have been on a STEEP rise in the past few years.
Lymetoo, Thank you - I have seen all this resources already! I am compiling quite the database of research on the MS/Lyme connection to present to this family member, I am just having trouble finding a way to do it that doesn't touch any nerves. I know what it's like to be desperately ill and not know what is wrong or if you're going to wake up tomorrow and be completely disabled, so I know the state of mind she must be in right now with this diagnosis of MS.
I also find it questionable that this doctor rushed to an MS diagnosis without properly ruling out Bb infection FIRST, and then placing her on such an expensive and unproven course of medication (the daily shots she is on have not been shown to alter the course of the disease and are extremely expensive).
Could it be that this doctor is getting some kind of kickback for prescribing these expensive drugs? I'm sure I'll never know, but given my recent experiences with the medical establishment it doesn't seem too far off...
Posts: 156 | From Virginia | Registered: May 2011
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posted
It makes me scratch my head as well. Why didn't any of the healthcare practitioners I've seen over the years think Lyme was even a possibility? Does a person actually have to live in Lyme (the city) in order for someone to think it a possibility? It's so bizarre. Even my Chiropractor told me to not look into it myself and to let him do it - I guess I'm not qualified or something. sheesh. I've been searching for answers for years and nobody has made the connection to Lyme except for me by my searching the web. Kudos to Google!
p.s. I'm still awaiting my test results. But, I'm pretty confident it's Lyme... it fits my symptoms perfectly.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
MS may even be vascular - google CCSVI, chronic CerebralSpinal Venous Insufficiency
Posts: 2675 | From ct, usa | Registered: Jan 2004
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I think some but not all cases of M.S. are lyme. But surely a person should rule out lyme before starting an M.S. treatment.
It is very hard to get thru to relatives who are so trusting of the medical establishment. We have learned not to be trusting, to ask questions, and look for our own answers. But not everyone wants to do this.
So, it is worth trying to help, but the outcome is uncertain. Good for you for trying anyway. A few people will listen, others won't. We just don't know ahead of time which is which. And very many attempts by lymed people over the years to help. Lots of past threads on this subject.
Posts: 8430 | From Not available | Registered: Oct 2000
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Hey lou, thanks. I figured it was worth a try, myself, but the other family members I have approached about this don't seem quite as concerned. Their attitude was pretty much "good luck, we don't think it's going to do any good", which is very sad considering the overwhelming evidence I presented to them. I had hoped they would help me, being closer to this other family member than I am.
I'm not giving up, I'm still collecting articles and studies on the misdiagnosis of Lyme as MS.
It just strikes me as HUGELY coincidental that she would be diagnosed with MS at the same exact time that I am struggling to get diagnosed with Lyme Disease.
I have responded very well to a combination of Flagyl and doxy (although I am afraid I am getting worse again now that I'm off the Flagyl but we'll see) which pretty much cements in my mind the fact that Bb is what I'm dealing with.
Her symptoms are eerily similar (started with a very bad headache and sore neck, has numbness and tingling and random pain throughout the body) the only thing that sets mine apart as NOT BEING MS is the arthritis in my ankles. MS does not cause arthritis (well, it's my belief that "MS" is a made up diagnosis that's used in order to sell a person on a lifetime of medication. I mean, the disease has to be CAUSED by something, bacteria or virus, right?)
You're right, lou, not all cases of MS are Lyme. Some are CPN, some seem to be related to exposure to EBV, measles, and other pathogenic viruses and bacteria - many of which are also carried by ticks!
Well, like I said I'm not giving up. I hate to be THAT person in the family who pesters everyone about their medical diagnoses but I WILL BE IF NOBODY ELSE WILL, dang it! You can't just let the doctors run wild, or you'll end up being medicated for all kinds of diseases that you don't have.
Posts: 156 | From Virginia | Registered: May 2011
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