Issues with my Neurologist and an (apparent) misdiagnosis

General
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Hi everyone,

I am new here. Very quickly, here is my story.

I've been living in a HIGHLY endemic area for Lyme and ticks (Upstate NY) and during my three years here, my dog and I would go out and play in the woods, run etc. He would sleep next to me and on an on...Okay, last year, in early October, I found a tick embedded in a hard to see place on my body. I panicked and pulled it out. I do not believe this was the first tick bite I experienced.

Fat forward to December 16 or last year where I was taken to an ER. I told the ER doc (at some ridiculous hillbilly hospital) about the tick bite and he ran the highly inefficient ELISA which showed negative for Lyme. He never gave me ANY antibiotics, instead choosing to run MRIs. The MRIs did show lesions, nut that was the only test. He diagnosed it as MS. I am 45 year old male - now statistically not impossible to present as MS but highly improbable.

I had to seek out an MS neurologist who I told about the tick bite and she summarily dismissed that, only ordering another set of MRIs. I was put on MS modifier drugs etc...No spinal tap, and no further testing for Lyme.

About a month and a half ago I FINALLy became my own advocate and went to an LL MD and he is 90-95 percent certain it is Lyme that has entered the CNS. I am on doxycycline and I will be moving back to California in about four to five weeks, where I have an appointment with Dr. Stricker.

I just contacted my MS Neurologist asking her to talk to me about getting off the MS drugs to which she said:

"It would be a big mistake for you to go off Tecfidera in my opinion. You may have been exposed to Lyme but you now have MS. There is also no evidence for neuro-Lyme and you would need a spinal tap to confirm that."

I had requested a spinal tap weeks ago and she dismissed that notion, saying wait until you test positive for Lyme.

My dilemma? I do not believe the MS diagnosis, never have. And I am being met with textbook resistance from the mainstream medical community. I want off the damn MS drugs, but I am also only now getting more help with Lyme.

Anyone have experience with this?

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Hi EJCed,

Thank you for sharing your story. I have been given MS work ups twice in an effort tto find something other than lyme. The neurologist said I do not have MS because there are no lesions on my brain but did acknowledge chronic lyme...which is rare because I do not live in an endemic area. I have been diagnosed with Fibromyalgia by my rheumatologist, which I simply do not believe. The same Rheumatologist did another lyme test which came back positive but she insists my only problem is fibro. It is so frustrating to have the blood work confirm what I know, that lyme disease is eating my life away, yet have doctors who insist on sticking with the preferred diagnosis of fibro. I have been told that I possibly had syphilis, or that my tests are "false positives". It is very disturbing that docs ignore labs and the differential diagnosis. I completely understand what you have gone through and am glad to hear you will see another doctor in CA. Have you tried to get tested through Igenex yet? They are not FDA approved but do look for many more bands than normal lyme tests. I think that Igenex also tries to determine if you have co-infections. I hope you are doing well, and thanks again for sharing!

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Great info dkel thank you for sharing with us. I have heard Dr. Stricker is awesome as well...I am glad you are going to possibly confer with him.

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Hi dkel,

Thank you I will check that out. It is a relief that there are tests that can approximate how we are doing and provide a way to measure progress. That has been one of my biggest concerns...how do we know when to stop abx or change treatment when lyme testing is so unreliable?

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Thank you dkel. It really means a lot to have a place to vent some of this out. I do not want to overburden my family by talking about my frustrations all the time so you all are a great source of relief! And I will definitely be sticking to my digs and continuing to fight the fight!

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Thank you David. Means more to me than I can express to have an outlet here. And I must mention to anyone reading this, we are all here for you and anyone is encouraged to vent out the frustrations associated with this disease. I am very thankful for this group!

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Hi dkel,

Indeed the burden of choice seems to be on us, the patient, which is nerve-wracking to me. Thank you for pointing out that ILADS suggests continuing treatment for a few months depending on symptoms. I find it very difficult to differentiate between symptoms and medication side effects. My pillbox is bursting and I know that everything I take has a potential effect that could make me feel worse.

I also have not read anything about permanent remission, which is disheartening. If no one over remises, what are we doing taking all these medications? That thought plagues me just as much as the disease. As mentioned though, it is nice to learn that there are ways to approximate severity of illness with tests such as CD57. I am concerned about my organs being on all the strong abx. I hope the body uses the meds correctly and adapts as you say.

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Hi David,

I agree we have a life sentence, which is both disheartening and empowering. Disheartening for so many reasons...not just losing our health (and minds) but the struggle to get help really makes me frown at the world. It is a shame how lyme is treated. And empowering because we have learned to adapt, be our own advocates, and educate ourselves on that which plagues us.

I am relieved to learn that abx help with the lyme carditis. At least there is a ray of hope! I think I can live with the brain problems, just don't want anything else to give out! Without abx I would be diagnosed with something like MS. I am thankful to have the knowledge that I have a bacterial infection though with knowledge comes burden. I am glad to hear your heart block has cleared up. Great news, dkel. I hope you are doing ok and thank you for sharing this info with us.