My boyfriend, Mike was diagnosed with Lyme disease at 17, from a bulls eye, treated with 28 days of doxy and never had another problem with it again. ten years later, (almost three years ago) he started developing headaches that just seemed to never go away. in search of answers he began exploring doctors and medications in the hopes that anything would help take away this never ending headache. We have been in and out of 8 hospitals since , with over 10 hospital stays because we were unaware of what this could be. MRIs revealed a ring enhanced lesion which six months ago after doing another MRI was no longer ring enhanced or active which I believe is a great improvement. If antibiotics can help improve brain lesions that that must be a good thing which I’m not sure that can help with MS.We begged many doctors to test for lyme and when they finally did, and sent the blood out to Stonybrook, his test came back postive for lyme and it was in both his blood and his spinal fluid. we were recommended to see Pat Coyle in stonybrook where she prescribed him 30 days of IV rocephin and diagnosed him with Neuro Lyme.Around day 9 he hurxed and we brought him to Franklin General Hospital unaware of what it was, he was thought to be allergic to the rocephin, only later did we find out that was a good thing and put him back on it to finsh the rest of his 30 days. In the midst of being treated for lyme disease we saw many different neurologists all of who thought this was MS. but we had the same problem with MS, he had headaches, and MS doesnt cause headaches. Aware that there are many doctors who do not know much about lyme we kept searching for answers and i have used forums and internet boards to learn as much as i could about lyme disease, and MS. Six months ago my boyfriend, Mike could not touch the top of his head because he was that inflammed, now im glad to say he can. Although i wish that was the end of the story. Five months ago he developed Optic Neuritis in his eye and we immediately brought him to Columbia Hospital in the NY city, hoping that perhaps there would be a better Lyme doctor there to help us with what was going on. Quite the opposite happen actually, the neurology team told us that a lyme doctor was not needed simply because “ they would just say it was lyme” imagine how frustrating that is. We’ll we experienced anything but a lovely time at Columbia, but at any rate he was prescribed IV Steriods which begin releaving the inflammation behind his eyes and his eyesight started to improve, its not100 percent but its pretty close and we havent had a problem with his eyes since. my worry with his being on steriods was high, knowing that he still has lyme disease but they insisted and to be honest, i was so worried about him getting his eye sight back that i didnt disagree. his symptoms are classic, theres not many symptoms of lyme that he doesnt have, but yet they are also symptoms of MS.
We have seen a few MS doctor, and just like the rest of them, they believe that after 30 days of treatment,lyme is cured and it can no longer be on the table.
He became depressed, which we began treating, his fatigue has since went away, and i finally have my boyfriend back. we have no current symtoms, headaches here and there, but nothing out of the ordinary
Yesterday, we followed up with another doctor, who has since then brought MS back on the table, and says he could have both and we should start treating MS...he has no symtoms tho??
he had optic neuritis, or rather a loss of sight in an eye, it could be both...he had a ring enhanced lesion, that im told has gone away, so without lesions how is it MS?
im sooo confused, and so worried, i dont wnat it to be either, i dont want to not treat MS if infact it is that and it gets worse...but its been over a year since they have been throwing this Diagnosis around...if it was MS, shouldnt he be worse? shouldnt things have changed?
whats the right thing to do?
how do you make a decision?
My feeling is the llmd will always call it lyme and the MS dr will always call it MS..so whos right?
Thanks in advance,