I find this alarming- how about you?

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mokeyho
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Date Joined Aug 2009
Total Posts : 103
   Posted 1/24/2010 12:50 PM (GMT -6)   
I am a 36 year-old female, diagnosed with Lyme, but only because I pursued an LLMD.  If I did not, I would have started MS treatments, as my neuro ruled-out Lyme. 
 
Since being a member of Facebook, I have been in touch with many people I grew up with.  Three friends in my close group all have been diagnosed with Multiple Sclerosis.  If I had accepted my diagnosis, that would make four of us with diagnosis.  Four people with MS. 
 
I find the problem is getting through to those who have accepted their diagnosis of MS.  My one friend said, Oh, I know I have MS.  My neuro ruled-out Lyme.  My Lyme tests were negative. 
 
He was just diagnosed at age 38.  He said he woke up and couldn't walk.  It was sudden.  He also told me that he is not doing the MS shots because he is not convinced that they help, as some people do them and they are fine, while others continue to get worse.
 
Any thoughts?

Lovelabs
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Date Joined Jun 2009
Total Posts : 367
   Posted 1/24/2010 1:02 PM (GMT -6)   
People are all different. I am not one that always believes my doctor. It only takes one misdiagnosis to understand they are not god.

If I had an MS diagnosis I would atleast try Lyme treatment. Just my opinion. I don't think treatment for ms has come very far, so I would atleast try abx before settling with that diagnosis.

Can't make all people feel the way you do. It is hard.

CajunGrl
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Date Joined Mar 2009
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   Posted 1/24/2010 1:39 PM (GMT -6)   
What I find alarming is that most of my friends on Facebook don't even know what Lyme Disease is, so I put a note on my FB saying if you have this and that symptom, etc., to please get tested for Lyme Disease. The scary thing is that some people are suffering and don't even know what they have.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Co-Moderator Lyme Disease Forum


Dowa
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   Posted 1/24/2010 2:19 PM (GMT -6)   
I had a "possilbe MS" diagnosis back in 1991 but all MRIs are negative so far. I also have two cousins with MS. I am from NH and they have one of the highest numbers of MS in the country. (Dont know why) So, I think its not surprising to see groups of people with MS just like you see clusters of Parkinsons in certain areas. This is not to say they do not have LD but I know from experince with my cousins that people do not like to stray far from their diagnosis. Cant say why but I think there is some level of comfort when you get diagnosed after years of suffering. I think that applies to LD as well. I dont however see any harm in trying antibiotics in you have MS because as stated here, they have a lot to learn still about MS and if the antibiotics work, then you have your answer.    D

1hunter
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Date Joined Oct 2009
Total Posts : 70
   Posted 1/24/2010 2:32 PM (GMT -6)   
I've had 2 nero doctors diagnose me as probable MS (they both suggested going on MS meds) i just went to a LLMD and he is sure i actually have Lyme disease. He sent a blood sample to Igenx for testing and we are waiting for results. I'm hoping and praying that i dont have MS.

peacesoul
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Date Joined Jan 2007
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   Posted 1/24/2010 3:07 PM (GMT -6)   
Back when I joined HW, I think myself or a few peeps from the lyme site went over to the MS board to share info on lyme and MS and the posts where BASHED!

Listen, many people with a diagnosis of an illness become familiar with their diagnosis and don't want to start over with researching new info.
Others, well they will walk to the end of the earth for answers to their illness.

As a lyme/lupus and skin cancer sufferer, I do find it alarming that people and dr's don't find EVERYTHING out they can about their "illness"

Lovelabs
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Date Joined Jun 2009
Total Posts : 367
   Posted 1/24/2010 3:17 PM (GMT -6)   
If you look at where there are "clusters" of ms cases in the US, it is always in highly endemic Lyme areas.

nasalady
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Date Joined Sep 2009
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   Posted 1/24/2010 3:35 PM (GMT -6)   
I managed to sneak some info (actually a video) on Lyme into posts on the MS forum and the Lupus forum recently, but when I posted the video on the fibro forum three different mods "talked to me" then one of them deleted the video and commented that I was using "scare" tactics.

Lots of people would apparently rather have something like MS or lupus or fibro than Lyme.
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

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Post Edited (nasalady) : 1/24/2010 2:54:34 PM (GMT-7)


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 1/24/2010 5:05 PM (GMT -6)   
So true lovelabs. NH last year had one of the highest reports of new Lyme cases. Interesting... My neurologist there has never mentioned the words Lyme Disease.  

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 1/25/2010 5:21 AM (GMT -6)   
Well, my LLMD offered to evaluate each of my friends and I don't think it could hurt, except if insurance becomes an issue. Whenever I hear, "My tests were negative for Lyme", I think that they have no idea. You can lead a horse to water...

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 1/25/2010 6:10 AM (GMT -6)   
I have a friend who has a "borderline lupus" diagnosis. She has had multiple surgeries for different problems such as carpel tunnel, disc issues in her neck. Her memory is bad, she gets lost. She had a Lyme test that was negative(only the Elisa(sp?)),and she tested positive for babs, so her doc put her on mepron for a month. Her doctor said she doesn't have Lyme. She believes him. Hellllooooo. Yes you do.

Traveler
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Date Joined May 2007
Total Posts : 35853
   Posted 1/25/2010 9:35 AM (GMT -6)   
Monkeyho,
I believe you are right - you can lead a horse to water, but you might drown them before you can MAKE them drink!!!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


springsjean
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Date Joined Mar 2009
Total Posts : 2154
   Posted 1/25/2010 6:50 PM (GMT -6)   
I also have a friend who has had MS for years. When I ask her about lyme,she said they ruled out as tests were negative. I have always wondered how many ms sufferers actually have lyme. I know of 3 people in my small town which is very high lyme area supposedly with ms. Really makes you wonder.

bablymers
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Date Joined Oct 2006
Total Posts : 1458
   Posted 1/26/2010 12:49 AM (GMT -6)   
http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5

Hi everyone,

There is an interesting new development in the theories about MS and it's causes/treatments. The link above takes you to a set of stories done by a Canadian news TV station. If you have the time (the segments are not too long), read/watch all the segments. It's very interesting and may help some sufferers understand a new way to test to see if the new method could help them. I will try to summarize for you: it is thought that there can be a blockage of the blood vessels that drain blood FROM the brain when it is trying to exit the brain and go back to the heart. This causes a "back-up" of the blood in the brain and this "stagnant" blood allows iron to build up in the brain. This causes all kinds of trouble, including neural issues and leads to the symptoms of MS. Hope my "nutshell" summary helps some of you that may find it hard to get through all the info. Sorry I don't know how to make the link "active". You will have to "copy and paste" the link.

Best wishes to all, bablymers mom

vicparis
Regular Member


Date Joined Jul 2009
Total Posts : 113
   Posted 1/26/2010 12:30 PM (GMT -6)   
Alarming - definitely. Suprising - no, it's what I would expect. Lyme is misdiagnosed so often and and as most of us have experieinced, most doctors don't give tests that result in accurate diagnosis.
 
I asked my LLMD if he thought I had brain lesions. He answered "probably, but there's not much to do about them except to treat the Lyme/co-infections - you'll be misdiagnosed as having MS if you have the MRI/brain scan."
 
I'm sorry so many of you are so sick.
 
Victoria

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 1/26/2010 7:05 PM (GMT -6)   
I have been diagnosed with MS by 6 Drs here in Oregon. I also have 8 CDC positive Lyme Tests. I tried there Ms Drugs they did not work. Antibiotics have always worked keeping my symptoms at bay. When I finally recieved IV Rocephin a few years ago I had a follow up MRI and all my lesions had disapearred about 11. Unfortunitly I stopped antibiotics after having a healthy baby and now I have 13 new lesions and many new symptoms. My Nuero here wouldn't even consider perscribing antibiotics . Why not she was amazed how well they worked last time.
 
I know that antibiotics make me better and I am so thankful I fought this diagnosis but it is something that will never leave me. I will always have MS in every Insurance company and most Drs eyes. I pay 3 times the amount for my Health Insurance because I have MS.  It is such a huge problem and I feel so bad everytime I hear about someone with MS and all the other diseases that may have Lyme or some other Bacteria making them sick.
 
I love my Family they do alot of fundraising for the MS societ in my name, which I am thankful for. I just wish I could tell them I wanted all the money to go to research about bacterias causing SOME MS and how antibiotics have helped many with MS.
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Bella49
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 1/27/2010 2:32 PM (GMT -6)   
That is interesting your friend woke up one morning and couldn't walk as the same thing happened to my  hospital roommate  who aso had a stroke.  This disease can cause atrial fib of the heart producing a  blood clot which can makeit's  way to the brain and cause a stroke!  This is what caused my stroke.  At least the hospital doctors agree on that point.
 
What state do you live in? ?  iI live in Washington state, although my tick bite was in  eastern Oregon.  Most of the doctors I have talked with say their is no lyme out here.

mother natures child
Regular Member


Date Joined Oct 2009
Total Posts : 231
   Posted 1/29/2010 11:57 AM (GMT -6)   
There are ticks in eastern Oregon, I used to live there. There are ticks in Florida, I live here now. They also say there is no Lyme here. How can we educate the Doctors?
 I am a Zebra


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 1/30/2010 10:07 AM (GMT -6)   
My take on this is a bit different...I don't believe people want to "cling to" their original diagnosis or are unwilling to at least test for Lyme Disease. They are just like most of us were before getting caught in this no-man's land of LD. Before all of this, if I had a problem I went to the doctor. They told me what it was and I did/took whatever treatment they told me to. I had no reason to doubt or question them - I am not a doctor nor do I have any special medical knowledge or training. I believed medicine was very black and white, cut and dry; that's the way it appeared and I had absolutely no reason to doubt this. If doctors ruled something out, I did NOT have it, so why would I continue to pursue it? It would make me look stupid and be a waste of money.

I had LD for 4 years before I was diagnosed. I went to the doctor immediately when my symptoms started. I had an Elisa LD within one month of my symptoms starting, and it was negative. After several months of many, many doctor and specialist visits, countless tests, and ever increasing symptoms coming on out of knowwhere - with some of them being an increase in the symptoms I previously had because of the Hashimotos Thyroid I had for MANY years before all of this came on (Note: Hashi's thyroid is exceptionally common and is NOT specific or more often diagnosed in LD patients - ask around, especially middle age and beyond, you will find you know lots of people with it - we have 6 in an office of less than 30 people) . Doctors were stumped and I looked like a moron - they just didn't get it at all and thought I was just suddenly having lots of unrelated issues popping up. I started researching the Web. I found LD and saw that sometimes people actually really did have LD even though the test was negative. I started reading and honestly thought what a bunch of wackos! They are blaming EVERYTHING on LD, and some of those things are obviously just things that OTHER people get too. It was overwhelming and something I thought was like the dumping ground for people who CAN'T ACCEPT any other diagnosis. However, I did bring some printed material to my doctor appointment and asked what type of Lyme test I had. My doctor actually listened to me and gave me the name of an alternative doctor who successfully treated another of her patients for LD. We discussed it and she really did not think I had LD, but it was up to me if I wanted to pursue it, she didn't discourage me but just really left me with the feeling that the test results were definitive and if I wanted to waste my money, go for it. Well, I thought just for my own peace of mind, I'd call the lab and VERIFY if I had the Elisa or Western Blot test. The person wasn't sure - upon explaining and questioning directly 'was this the Western Blot test' that I had? She said "I think so." I more recently found out it was not a Western Blot, but the Elisa test. There you have it; I pursued this and I got the recommended LD test to find out 'for sure' and this door was closed; I had NO reason to pursue it - even if someone other than a doctor would have told me otherwise because people are always to trying to "push" their own illnesses onto other people to get checked out. Every doctor I had seen in the next 4 years initially thought of LD because of my symptoms, but when they saw the negative test result that door was closed - I didn't push it because I had NO REASON to - it's negative, time to move on and find out what this REALLY is.  about a year and a half ago, a new doctor I saw said we really should do a follow up LD test - it was also an Elisa test and was also negative. This past summer I pursued an alternative doctor because I couldn't get any doctor to even discuss the fact that my thyroid symptoms were just all over the place and had been ever since all this started. This has always just confused doctors because my worst thyroid symptom has always been dizziness, and when this started the dizziness was crazy - it would be severe and sometimes a combination of vertigo and room spinning type. My TSH hopped all over the place and at one point was told it was because I'm getting so many TSH's and that it naturally does jump around a bit and all this testing is just showing that, and that my TSH has always been within range so it's not my thyroid.

OK, jump ahead to my alternative doctor. I wanted her to at least look into the thyroid and all hormones because I couldn't get anyone to even discuss this being a hormone issue because "testing would likely show my hormones are normal, it's just the way each individual person's body reacts them." Well, this doctor was very willing to look into my thyroid and other hormones, but immediately said I need to have an Igenex Lab LD test. I was really annoyed because I brought with me 2 negative LD test results and this Igenex one was nearly $300 and they didn't know if insurance would cover it or not. I VERY grudgingly had the test, and could not believe it when they called and told me it was positive. I was equally dismayed when I got a copy of the results and they 'clearly' were not positive. It even said so on the result sheet! I called my doctor, quite upset, asking why they would tell me it's positive when it is not! That's when I began to learn all about this LD, and it was very nicely explained about the bands, with the lyme specific ones being especially important. The fact that the lyme specfic indeterminate bands in conjunction with actual positive ones, plus my symptoms, made for a clinical diagnosis. Even though I was about doing cartwheels I was so happy to finally have a diagnosis, I did so tentatively. The test really did say negative. I had already incorrectly been told all of my symptoms were caused by an allergy. My own GP, upon my inquery and a copy of my Igenex Lab results, said I do not have LD.

Why would anyone continue to pursue THIS if they already have a diagnosis, are receiving treatment, and being told they definitively do not have LD? I NEVER would have pursued this again and would have been equally 'happy' to finally have any diagnosis, just to be able to move on already - the unknown is so much worse than knowing what you are fighting. What I'm trying to say is, don't be so hard on those people who you "know" have LD and refuse to pursue it. I would bet there are a fair share of us here on this forum who really do have something OTHER than LD, but received a clinic diagnosis and so WE are clinging THAT diagnosis.

Post Edited (Tala3) : 1/30/2010 9:15:49 AM (GMT-7)


Cheezhead
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Date Joined May 2007
Total Posts : 517
   Posted 1/30/2010 9:59 PM (GMT -6)   
Tala3,
Wow what a well written post. I would have to agree with most of what you said. I also can not blame other for not pursuing LD as a possible diagnosis. I like most people put a lot of faith in our doctors. Even though I had a confirmed exposure with ticks including a bull's eye rash, and most the symptoms of Lyme. I still have never had a CDC positive test for Lyme. Even my IgeneX test was CDC negative I had 41+++ but only a few indeterminate bands.

If I had not had a high exposure with ticks, including many nymph sized, I would have moved on to another DX after my PCP tested for Lyme using Quest. I would have never question him. As it is I have questioned my clinical LD DX many times, but there is simply no other logical answer as to how I could be perfectly healthy prior to my tick exposure, and with in 48hrs after my tick exposure I have never been the same.

I also used to think people are trying to make everything that ills them LD. How could something so small cause so many symptoms. This is what the average public thinks. I helped my father in law carry 12 sheets of drywall into his home today, by the time we were done, I was out of breath, and so dizzy I could not stand. He said come on your 20yrs younger than me, how can you be out of breath. I said because I have chronic Lyme. He replied I thought you had that four years ago, you telling me that little bug is still affecting you. They don't get just how debilitating LD is. Hard to get easy to get rid of...........RIGHT........I WISH This disease has affected every part of my body, every function of my body.

It truly is the cause of everything that ills me........To bad the medical community has not figured it out yet.

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 1/31/2010 6:51 AM (GMT -6)   
Bella49- I live and grew-up in Maryland, in the suburbs of DC.

As far as anyone pursuing this as a daignosis... What is MS exactly and the other diseases that have no known cure or cause. To me, it sounds like a label for something unknown. I am confirmed with Lyme in my spinal, so I think my friends should consider Lyme for them, too. I just don't believe that 4 people from one group would all have MS (me being the 4th that pursued a different diagnosis), as MS is not as common as the flu. Really, all of us recevied diagnosis in our mid to late 30s, wtih no family history of MS (over the past few years).

And another major obstacle is the cost of treatment... the uninsured who can't work because of their diabilities can't afford it.

I also wonder how many others from my group have been diagnosed with MS or other similar conditons and don't share that information. This is what I'm trying to find out now.
 
Tala3-  Thanks for sharing your story.  That is a lot to go through and I'm sorry.   I think my friends should look into Lyme because we have basically the same symptoms, age of diagnosis, lack of MS in family history and the fact that there would be 4 of us, which in itself is enough to make a case for seeking a second opinion.  My neuro didn't even consider that I had lyme because she was going on the WB (even though I had several hits) and here it is in my spinal fluid.  I too have questioned what I have even though I have an actual diagnosis because I think, what if... but then I remember all that I have learned and don't think it's far-fetched to think that one day, we might learn that MS is really a name for Lyme or some other bacterial infection. 

Post Edited (mokeyho) : 1/31/2010 6:01:55 AM (GMT-7)


1hunter
Regular Member


Date Joined Oct 2009
Total Posts : 70
   Posted 1/31/2010 8:30 AM (GMT -6)   

I completely agree with seeking an alternate diagnosis especially with MS, it’s well known that many diseases have similar symptoms and present similar to MS. I can’t believe anyone would sit back and accept a disease that there is no cure for (MS) when, they may have something that is cure able. I’ve been to 2 neros and the Mayo Clinic. All of them have told me I have “probable MS” but I have only been given the most basic, unreliable Lyme test available. It’s hard to believe they can say “you don’t have Lyme disease” so easy, especially after I told them I have had a high exposure to ticks (usually 20-30 per year I pick off of myself) ultimately you are responsible for your own health, I will not accept that I have MS until I’m satisfied that everything else has been ruled out.  Just my opinion

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