Introduction and Advice

[LymeMS]

First time posting here, but I have been diagnosed with MS in Dec 2012, and tested positive for Lyme through Igenex September 2013. Up until then, I had several LabCorp WBs that kept showing bands 23/41 as present, but of course I was negative to the CDC.

I had several lesions on brain and both spines, complete sensory numbness from the chest down including hands, so I am a classic MS patient. As of now, I refused MS drugs and am taking LDN at 4.5mg and several supplements like NAC and ALA. I do not plan on taking MS drugs like Copaxone anytime soon, but after my most recent relapse, it's making me think.

On my very first MRI I had "numerous" lesions. The second MRI 6 months later I only had 9 new lesions. It has been a year since any drastic symptom, but last week I told I have Retrobulbar Optic Neuritis. So I assume I have a lesion to correspond this new symptom. Has anyone here had RON on ON diagnosed by an eye doctor?

Any thoughts on my choices of treating Lyme over MS is appreciated, especially if anyone has been misdiagnosed like myself. I choose to treat Lyme because Lyme can be tested by dna whereas MS is only diagnosed by a series of tests. Also, I believe MS is caused by an "infection" such as Lyme, EBV, etc...

If interested, please read my blog for my exact story and history at www.learnlyme.com

[LymeMS]

I appreciate your response. Having more lesions does bother me, but when I think about, I went from numerous to 9. Yes it is a terrible way of thinking, but my first MRI was not an MS based MRI, just a basic one, so those 9 lesions could have been missed on the first one. I will wait for my next MRI on Feb. 27th to see what is going on in there and base a DMD decision on that.

I feel treating Lyme no matter what, is the right decision. Research and people's stories prove Lyme can be more detrimental than MS itself. I had more symptoms than the "normal" MS symptoms, but because of lesions, symptoms, and o-bands, MS was correctly diagnosed in that aspect. Never had a second relapse, but maybe doctors don't wait for the second anymore and just want you to get on a drug.

[LymeMS]

The main reasin I chose to treat Lyme, is because I was tested for Lyme during my first symptoms and bands 23/41 came back as "present" and those are lyme specific bands. Another reason to treat for lyme is because MS patients have shown major improvement using the abx Minocycline. So an autoimmune is being treated with an abx and abx are used to treat infections. So getting on Minocycline is a win win. Minocycline is also combined with Copaxone for greater improvement. Terry Walhs using Minocycline, and so does the Wheldon Procotol. Mino can enter the BBB which MS patients are known to have a damaged BBB, mine was still intact but I did have 5 o-bands of inflammation according to my LP.

I am against DMDs because interferon-betas have pretty been proven to not do much. So if I would take a DMD, it will be Copaxone because I can take Mino with it, and LDN as well. LDN cannot be taken with interferon-betas.

I was dx with MS first within 5 days of my MRI. I think the neuro jumped the gun because MS is usually dx after a second episode, which I never had.

As for inection, there are several articles out there regarding EBV and MS. When MS patients are in relapse, their EBV antibodies are through the roof. I performed this test on myself, and i too had very high EBV levels even though I never displayed Mono symptoms in my life. With all that said, I believe something triggers MS, in my case.... Lyme.

I made a tough decision to not jump on a DMD immediately. Of course I have fear about getting worse and that is why I may take Copaxone after my next MRI. I want to wait to see what is going before making that decision. I am taking LDN which is the 8th MS drug and something my neuro will prescribe, but only after I try the 7 others first. The thing is, LDN is cheap and has NO side effects.

[supermum_ms]

Hi and welcome to our little MS community,

I imagine because (off the top of my head) we've not heard from anyone diagnosed with 'both' MS and Lyme, so many of the responses you get, might be more about MS and the benefits of treating MS vs not treating. Lyme would more usually generate questions, from people dx with only one and being worried its the other, or even people dx with Lyme and recommending people dx with MS, to question their dx and get tested for Lyme.

To be honest, i'm not at all sure i understand what your meaning by the last part....

"Any thoughts on my choices of treating Lyme over MS is appreciated, especially if anyone has been misdiagnosed like myself. I choose to treat Lyme because Lyme can be tested by dna whereas MS is only diagnosed by a series of tests. Also, I believe MS is caused by an "infection" such as Lyme, EBV, etc... "

I can't work out your rational for choosing to treat the Lyme over the MS, the cause of MS has NOT been determined! Infection is just one of the possibilities and regardless of what you believe or not to be the cause of MS, you are still developing new brain lesions. I think 9 new lesions in 6 months, isn't "only" at all, that's a lot of demyalination happening and more than enough to warrant trying to slow it down with disease modifying drugs.

I think you only need to look at the history of MS, prior to the disease modifying drugs being available, to understand the long term expectations of not treating the disease (MS). To me choosing not to treat MS, (quite different than not being able to afford, none worked for you, MS type etc) is basically no different than waging your future health against the odds, and by knowing MS history, the odds of not being disabled in someway, unfortunately are not in the MSers favour.

So from my perspective, I always think it's better for the person dx, to take a proactive approach with their disease, than it would be to do nothing to alter the course of the disease itself.

Cheers.........JJ

Btw by "misdiagnosed", are you referring to not being correctly dx with Lyme, until you were tested through Igenex? If so, I was diagnosed with 'idiopathic' individual medical conditions , undiagnosed, misdiagnosed, rediagnosed and somethings even left undiagnosed, for well over a decade before MS was even mentioned.

[Guitar_grrrl]

Oh,, and treating Lyme and MS doesn't have to be mutually exclusive.  Best wishes.

[Guitar_grrrl]

Hi, LymeMS, and Welcome!  You've found a supportive and informative place.  Lots of folks choose not to use a DMD for various reasons. To me, an increase in lesions and flares is a clear reason to start a DMD.  

I was diagnosed 5 years ago, after some 25+ years of relapsing/remitting weirdness, so basically, I went all those years without a DMD.  By the time I was diagnosed, things were pretty active.  I've tried Rebif, and I tolerated it pretty well, until I developed hives with it. I've been on Tysabri ever since, and I'm doing very well on it, with no new enhancing lesions, and very little progression.  Being JC negative is a great help, and as long as I am, I will take Tysabri, just because I feel it's the right thing for me.  

What is your resistance to taking a DMD?

If it's any help, I'm kind of a Ms. Natural, eat organic produce (lots of it!), avoid any kind of processed foods, have a strong belief in Yoga and meditation, and live as clean life as I possibly can. Yet I put a potentially hazardous monoclonal antibody in my body every 28 days.  Why? Because the benefits outweigh the risks.  And I firmly believe it's beneficial to me.

That's my $0.02

Again, Welcome!