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lyme v. ms?

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Posted 10/3/2008 12:04 PM (GMT 0)
i know this lyme v. ms is a sticky situation, my boyfriend has suffered from neuro lyme for a little over two years, a few weeks ago he developed optic neuritis in one eye and has started to regain his eye sight finally, the drs here seem to believe its MS, and have even gone as far as diagnosing it yesterday as MS. however, he was in such bad shape 9 months ago, that he couldnt even touch the top of his head, and IV antibiotics helped, that makes me think its lyme, since nothing really helps MS.

but how can you really be sure? im nervous no matter what way this goes, could it be both? if we believe its ms and stop treating lyme itll get worse and the same for the other way around...
so now what?


Amanda
Posted 10/3/2008 1:49 PM (GMT 0)

Hi Amanda.  I am sorry your boyfriend is so sick. 

How long was he sick before getting diagnosed?  What were his test results?  Has he been treated for just nine months?  Is he currently being treated?  If so, what meds is he taking?  Is he seeing a Lyme knwledgeable doctor?  What does his doctor say? Does he have co-infections? 

I don't know the answer to your question regarding MS.  I do know that treating tick-borne illnesses can be very complicated and no matter how unfair it is, in many cases it can take time to recover. 

He is very lucky to have your support.

 

Posted 10/3/2008 2:29 PM (GMT 0)

ticker,

My boyfriend originally got Lyme for the first time at 14, had a bulls eye, 30 days doxy oral and was thought that it had gone away, about 2 1/2 yrs ago he started getting terrible headaches every day among many other things n the search for a diagnosis started, in novemeber after many hospital stays, he was finally diagnosed with lyme when his blood and spinal fluid came back positive twice. he has been on 30 days IV rocephin, doxy and now is on ceftian. however, last week he began to loose eyesight in one of his eyes, we brought him to the hospital and they said he had optic neuritis, basically inflammation of the optic nerve, which may sometimes be the 1st symptom of MS. of course the neuroligists were all over the idea of MS, as they always are. and refused to send in an ID lyme dr, becuase " theyd just say it was lyme"...uhh yeh!

as far as we know, he has no co infections, and the antibiotics have helped him tremendously compared to the way he was not so long ago....

its just so controversial, this lyme ms back and forth. but who do you listen to? the lyme dr that tells u, u have lyme or the ms dr that tells u u may have ms?

Posted 10/3/2008 3:29 PM (GMT 0)
Amanda,

I was diagnosed by a neurologist with MS. When I went to the neurologist I hadn't lost my vision, but I had was extremely sensitive to light and had a blind spot. In addition I had numbness over at least 50% of my body and symptoms on my right side similar to a stroke. He ordered 4 MRIs which indicated there are lesions and spots in my white matter. I told him I wanted to be tested for lyme and he said he thought that was reasonable. (I couldn't believe it) I have not gone back to him since. I think it is lyme and I am pursuing treatment for lyme. I don't want to throw good money after bad by going to him again. If I need to pursue MS in the future, he will be there. I don't want to be distracted by MS or other doctors.

A friend who had lyme years ago sent me to her lyme dr. He diagnosed me clinically and began doxy. My blood test was normal at first until after I started the doxy. My symptoms got worse at first, although my vision to a lesser degree.

If your boyfriend is seeing a lyme literate dr. find out what he has to say about your boyfriend's vision. If he isn't seeing a llmd, I think you should find one.

I got copies of the MRI reports. They list possible diagnosis at the bottom of the page. At the end of that it said "less likely, Lyme" Neurologists will see MS.
Posted 10/3/2008 7:21 PM (GMT 0)

Hi Amanda.  Since your boyfriend is responding to antibiotics, it sounds like Lyme to me.  Was he tested for all the co-infections?  This is very important.  How many days was he on Doxy?  Is he taking Ceftin by itself?

Definitely make sure his doctor knows about the optic neuritis.  I Googled "can Lyme cause optic neuritis" and many sites with information came up.  You may want to check them out.

Posted 10/3/2008 9:25 PM (GMT 0)
Hi Amanda,

Keep in mind that lyme and co-infections requires a clinical diagnosis. For instance, there are something like 14 strains of babesia, and only one of them is testable. My LLMD looked at my history, and treats as if I have lyme, and probably co-infections. He knows it's not too meaningful to specifically test for them, as it's not possible to be certain that way.

Since the abx helped, it does sound like lyme and/or co-infections. Run, don't walk, to a good LLMD.

Best of luck to you.
Posted 10/9/2008 3:05 AM (GMT 0)
Lyme can trigger MS, Lupus, rumetoid arthritis, etc. If MS is not in his family and he has a history with lyme - I would not stop until you find a good lyme dr. Most of the time, MS can be reversed if you treat the lyme appropriately. It won't happen overnight. I would say don't expect any significant improvement for the first 6mo to a year.
Good luck.
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