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Do I have MS or Lyme? Help!

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Posted 7/11/2012 3:11 AM (GMT 0)
Hi there,

I'm currently undergoing investigations into a diagnosis of MS, however after reading a lot have learnt about Lyme disease. So far my symptoms have been next to none, or so I feel, and a part from one episode of altered sensation in my right side thats all I've really had... although this lead to an MRI which showed 12 or so lesions on my brain. How do I go about getting tested for Lyme? Where I come from there is a lot of doubt over whether it actually exists here, but I have travelled to Europe, where I recall 2 'poppy seed' like things buried in my skin which I ended up picking off a few days later not knowing what they were.... Could they have been ticks? Please advice me on how to go about this, I did mention it to a doctor, but she had never heard of Lyme disease.... I am also worried as many people have stated that tests often show false negatives...
Posted 7/11/2012 11:49 AM (GMT 0)
Hi Adi,

Welcome to the forum!

Lyme can often be confused with MS in that it does produce lesions on the brain.

Have a look at our "New to Lyme?" thread at the top of the forum. It has information and resources that will answer most of your questions.

You can get testing from Igenex with the help of your doctor. You will want to find a Lyme Literate Doctor. You can start a new thread entitled, "Looking for an LLMD in ____ (name your nearest big city).

Yes, the testing is not very accurate, particularly with a long-held infection, but it is a starting point. The Lyme Literate Doctor will evaluate your symptoms and test results and diagnose you clinically.

You are very right to look into this!
Posted 7/11/2012 5:01 PM (GMT 0)
As I am sure you have read, the two diseases have many of the same symptoms. The poppyseed like things could certainly have been ticks but many of us here don't remember a bite. There is great controversy surrounding the diagnosis, testing and treatment of lyme. I would certainly be sure to research as much as you can and then take it upon yourself to get tested for lyme. Lyme can mimic so many other diseases and can wreck havoc on your body so its not something you want to "let see what happens." I really don't know much about MS and have tried to research it in between my lyme research. I too have lesions on my brain but the neurologist I went too also didn't know much about lyme.

Good luck and keep us posted.
Posted 7/12/2012 1:26 AM (GMT 0)
Thanks for the reply! As for finding a LLMD in New Zealand, there are NONE because we don't have harmful ticks, and also found out yesterday that we also do not have the Western Blot test in NZ. So it will be very tricky to ask someone about this. Is there another accurate way? My next appointment with the neuro won't be for another month or 2, should I get in touch with him before that or just wait it out? That's if he even knows about Lyme disease.... haha
Posted 7/12/2012 11:28 AM (GMT 0)
Hi Adi and welcome!

Sorry to hear of your problems..  I know of a lady that lives in the U.K. and she sent her blood to IgeneX Labs in California.  So I know it can be done and IgeneX is known for being the most accurate lab the world has (no lab is 100% accurate).

You could e-mail IgeneX and ask them about sending your blood there.

www.igenex.com

Also, I wanted to say that you may want to look into alternative medicine, you have nothing to lose by learning about it.   There are many good books out there such as:

Healing Lyme by Stephen Buhner, Beating Lyme Disease by Dr. David Jernigan, and then there is the Cowden Protocol, Byron White, etc.

Amazon sells Buhner's book, but the last time I looked they do not have Dr. J's book but if you are interested, you can go to Dr. J's website and buy his book there:

www.hansacenter.com and click on shop or store (I am not affiliated with Dr. J. in any form, his protocol simply helped me get my life back after having chronic lyme for many years)...

Hope this helps,

Denise

Posted 7/14/2012 1:08 AM (GMT 0)
Adi:

Did they also do a spinal tap for you? I have over 20 lesions on my brain, but not MS according to the neuro's at UCSF. I did test positive for lyme through Igenex labs but not on the typical lab test (WB).
Posted 7/14/2012 1:22 AM (GMT 0)
Hi Carrie,

I did have a spinal tap although it was unsuccessful and they couldn't get any fluid out. My next tests are evoked potentials and my neuro said he doesn't want to put me through another lumber puncture at this stage. Although I wouldn't mind getting another one if it means getting a correct diagnosis. Next time I see him I'll ask about Lyme's, although this won't be any time soon.
Posted 7/14/2012 2:31 AM (GMT 0)
Adi,

I will bet you that if you ask a neuro about lyme disease, they are probably going to say that chronic lyme doesn't exist. I was seen at UCSF early on after my symptoms appeared. My first neuro asked me (after seeing my MRI with 20 lesions) if I'd had lyme disease. He was a young neuro. I saw another neuro last December (an older professor) and he told me "you DO NOT have lyme disease". It would have shown up in your spinal fluid and your blood test was negative he said. He was adamant. So, I think that the older generation are not so liberal with a "lyme diagonsis" but I think that some of the younger doctors are more open to it being a possibility.

My first symptom was a numb/tingling sensation under my left eye followed be a LOT of different symptoms of tingling/vibrating and numbness that I have on and off all the time. If I were you, I would contact a Lyme Doctor and be tested. There is Igenex Labs that does testing and also, there is a newer lyme test through Advanced Laboratories. You can google them. My lyme doctor told me this new test is probably going to be the "gold standard" for lyme testing. I don't have my results for that yet however, I've tested positive many time through Igenex. My first lyme doctor tests like every three months to see how the treatment was working.

Anyhow, I'll be watching for your posts and good luck with everything!
Posted 7/14/2012 2:33 AM (GMT 0)
Adi,

Did you see your MRI? I think that MS lesions usually follow a certain shape and are located in a specific area. Don't quote me on this...I'm not a doctor...just saying what I've read...
Posted 7/14/2012 8:32 AM (GMT 0)
Hi Carrie,

Thats it, the one thing I am worried about is my neuro not supporting that it exists... Especially because a) here in New Zealand we don't have ticks, hence no Lyme disease, and b) I have to bear the cost and logistics to get tested myself, so it will be very disheartening if they come back negative and have to do it all over again, and I'm only 21 and my mum and everyone 'supporting' me think I'm a nutcase for suggesting this disease and think I should leave it up to the neurologist. I guess its better to get to the bottom of it though! No I haven't seen my MRI however, I have read the report but it's a whole lot of medical jargon which makes no sense to me haha. It just says where they are located and I think thats about it, namely Juxta cortical region and periventricular region? . I have been in contact with Lyme Association of Australia and there is an LLMD in America that I can get in touch with to have appointments over skype with, so I may look into that.

Thank you for your help!
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