Hello ladies and gentlemen! I had been thinking a bit and was curious about something, I figured asking is the best way to ease my curious mind. I've been reading quite a bit, and I try to look at facts more than anything. Having that said, I tend to look at medical studies, tests and things of the like. It seems while I am learning about Lyme - MS, ALS and Parkinsons Disease are mentioned quite frequently. Some studies suggest a link, some studies suggest no link, others state they have no clue.

It seems that essentially in the end of it all, both MS and Lyme are clinical diagnoses. I've heard from many Lyme patients that a lot of them were tested for and in some cases diagnosed with MS. It does appear to me the symptoms have an outstanding similarity, and even when brain scans come into play both can produce abnormal results (lesions, 'patches', etc.).

I was wondering if before you were diagnosed, if you were tested for Lyme or any of the associated co-infections? Like, the "Lymies" are tested for all kinds of random things (I even got tested for that one toxosomething you get from cat poo ).

I must admit it's the first time I was diagnosed with something I am completely fascinated by. Not only do I learn about one disease, but I get to learn about several others, as in many studies I observe, they seem to 'sometimes' have 'links'.

Anywho, sorry for babling. I was just curious and I hope you don't mind my asking. I personally wasn't tested for much as I consider myself fortunate enough to have had the 'bulls eye rash'. I did have to get a total of 72 other tests though due to how progressive it has been (I didn't know it was possible for my knee to swell so large).

Maybe I'm just weird when I read all of this stuff, but I love learning about new things. My mom always worries I'll end up terrified of the disease, but I'd be terrified if I knew nothing.

Anyway, here's just one example of the things I read:

Source: Lyme borreliosis and multiple sclerosis: any connection? A seroepidemic study.


Some other links:
Multiple Sclerosis clusters follow lyme worldwide

Lyme misdiagnosed as Multiple Sclerosis for 20 years

Multiple sclerosis or Lyme disease? a diagnosis problem of exclusion

Have a good day!

I was never tested for Lyme Disease - Back in the dark ages when I was diagnosed - Lyme wasn't known about or considered as a possibility -- I do find the similiarities in symptoms fascinating though -- Thanks for posting ------Lyme is curable isn't it?

Nope, no tests for Lyme. In my case, it's hard to fathom the extreme increases in disability over the last 5 years.

These kinds of data always make me wonder how many of the two populations might simply have both under unrelated circumstances.

I also have Granuloma Annulare and my dermo says it's not directly related to MS, but it is another autoimmune issue. But is it?

I love to learn too, I'm on a learning mission as I type, I'm more of an American natural history buff.

Hey, Miss Ellie, let us know when you figure all that out!

I don't believe there's a connection (i.e, causative) but it's fairly well known that advanced lyme causes permanent neurological symptoms. Two different disease processes....same end result.

I had lyme disease in 1989 (lived in CT, so it's a foregone conclusion you'll get it!) It was caught quickly. I estimate 4 weeks after tick exposure. I had horrible pain in joints and flu-like symptoms. I was treated with ABX for a prolonged period and never had any issues afterwards.

in 2001 I was dx'd with MS. I have a mom with MS, had a hep B shot several months prior to dx, and as an environmental consultant, I've had lots of exposure to chemicals. So, I have plenty of risk factors.

It seems to be a fairly controversial topic, so I'll go off of what I've read that's most reputable. From what I gather, if caught in the most early stages and treated immediately, it's curable. What I've been reading (only on page 22 out of 188), this doctor suggests doing repeat CD 57 tests as well as something else and documenting changes (the treating provider does this). If the numbers don't do the right thing (go up or down, I forgot, hehe) - it gives them a better idea of if the patient will 'relapse' or not. They seem to talk about it like it were cancer in a way, as in you have it and it goes into a remission of sorts and in some cases (it hints more towards long term infections ("chronic lyme") and things of the like) there's changes of a relapse.

They seem to prefer to call it treatable instead of curable.

Here's some clips from Tom Grier's writings, these are from studies (link to full article below)

This is what was most interesting to me:
Link to full article here: http://www.canlyme.com/tom.html

(Most of it is easy to read, by the way. He's kind enough to not throw huge medical words around, lol)

So I really don't know if it's curable, but I don't think 'they' know either! In my opinion, it's all based off of the individual and I'm sure the strength of your immune system comes into play.

In my case, they think it was a reinfection or long-term infection even though I displayed the EM rash in July after going back home to visit. Kind of funny I grew up there picking ticks off of me and move to California and go home and my first day back I get bit! They've found my symptoms to be too progressive for early treatment, either that or my immune system is too pathetic to handle anything. It only took 4 weeks for chronic joint swelling (I mean it's gross they get so big), muscle pain and cramps, etc. Unfortunately it seems to have bullied the neurological side of things that was already not the greatest in the first place.

In a way, it's humbling. I am almost ashamed for what I complained about before because waking up afraid of my day is the worst experience ever. I've found having a schedule is the best way to do it. I know I have until around 3:00pm before what they call "midday fatigue" kicks in. I have until 6:00pm until my feet and knees swell up. I've turned into a morning person, and I totally hate mornings. The only perk of the morning is my coffee smells AMAZING when I first make a pot!!!


I might get the IV antibiotics next week. It's gross but I'm actually excited, I am so sick of taking pills I'd prefer to have a 'tap' put in my arm.

Ellie, nice to see you again!

I was reading up on Lyme and MS quite some time ago, and came across this:

Med Hypotheses. 2005;64(3):438-48.

Chronic Lyme borreliosis at the root of multiple sclerosis--is a cure with antibiotics attainable?

Fritzsche M.

Clinic for Internal and Geographical Medicine, Soodstrasse 13, 8134 Adliswil, Switzerland. Contact Markus Fritzsche

Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years. Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet. Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks. In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable. As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted. The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation. Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS. Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls. Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised. A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.

http://www.canlyme.com/multiple_scle...ypothesis.html

However, what I also came across was this article:

IS LYME DISEASE PRESENT IN CANADA?

Lyme disease is not common in Canada. Although it is not a reportable disease in most provinces, less than 30 cases are reported each year (3). In Canada, Lyme disease can be acquired in areas where the tick vector is well established. More than half of the cases of Lyme disease from these areas, and virtually all of the cases from nonendemic areas, can be linked epidemiologically to travel to a highly endemic area of the United States.

WHERE ARE THE TICKS THAT TRANSMIT LYME DISEASE LOCATED IN CANADA?

Not all ticks can transmit Lyme disease. The common dog tick (Dermacentor variabilis) is not a capable vector for the Lyme disease spirochete. Only the deer tick (I scapularis and I pacificus) is involved in the life cycle of B burgdorferi, and it transmits the disease. Although I scapularis has been found in all provinces from Saskatchewan to the east, and I scapularis was demonstrated to be carrying B burgdorferi in some of these ticks, most ticks have been adult females most likely brought to Canada on migratory birds and have not undergone their full life cycle in Canada (4-7). In fact, I scapularis is established (having larva, nymph and adult stages present) only in the Long Point peninsula and Point Pelee National Park, both on Lake Erie in Ontario, whereas I pacificus undergoes its full reproductive cycle in Canada only in the Fraser River delta, the Gulf Islands and Vancouver Island of British Columbia (8).

(That was reported on this link, but you can't get to it any more: http://www.pulsus.com/journals/index.jsp ) This link says basically the same thing, that Lyme is very rare in Canada: http://www.phac-aspc.gc.ca/publicat/...6sup/acs3.html

Canada, especially the mid-western Provinces, has one of the highest prevalence of MS in the World . . . but VERY little Lyme. The US has a higher incidence of Lyme, but seemingly lower prevalence of MS.

Having said all that, I don't think I was ever tested for Lyme.

Cherie

Thats very interesting, thanks! Nice to see you, too. With my up-and-down health I decided to take a small break from everything for a while. Thankfully my new glasses show up in 2 weeks so I can enjoy learning more without the associated headaches and word chasing. Yay!

Regarding the Lyme test(s), it's kind of a waste of money in my opinion. I consider myself lucky to have had the rash, because if I didn't I'd rely on a test where I'd literally have more luck flipping a coin and guessing which side. Looking at the studies which show accuracy (actually, it shows more inaccuracy than anything), it's really sad to see that tons of people will be misdiagnosed or even worse, not diagnosed at all because the tests are yet to evolve into a more accurate reliable source of diagnosis means.

I'd actually seen this one article that cited a study that shows the CDC (that year) had the most inaccurate results of all. Which is kind of scary. For the most part, they seem to use those results ("CDC Positive") for statistical and reporting purposes, but when they are so inaccurate it's really hard to rely on them to give real true numbers.

From the article I linked previously, here's a clip.

There's tons of studies to compare how accurate/inaccurate the various tests are. I've had a few rounds of tests, but I always get sick first. The last time my lymph node had swollen up where it looked like my collar bone was broken. Needless to say, I can't even produce antibodies to get any good or bad test results.

I really just want it all to leave my brain alone. The poor lil feller has enough to deal with. I've decided to try this diet of pretty much all raw green stuff. I'm hoping I last at least 3 days before I pick up some cupcakes. Hah.

Oh, here's a video of an upcoming feature. http://www.openeyepictures.com/underourskin/
It wont play sometimes for me, so I click the little arrow next to "HD". I don't know if anyone else has that problem or if it's just me.