Back to say goodbye

[Wondering]

Hi All,

Ive been on and off this board for the last 8 months...as with many of you, it is a long road, sometimes years to end up with an MS diagnosis. I have been to numerous doctors, neuro's, naturopaths, chiros, infectious disease docs....the list goes on. MRI's, CAT scans etc..

We have all been there....in this journey to get some answers..

I finally have my answer...i have Lyme disease. The reason I am posting here is because, like many of you, we have been through the ringer in the quest to figure out our health. My symptoms have all been neurological and mimic MS and many other diseases. Please, please don't let doctors tell you that you have MS without getting proper testing done, and if there is any doubt, then research Lyme disease and you will be floored by how the symptoms all look like MS.

Many thanks to all the wonderful people on here that have provided great resources, opinions and nutritional advice. MS is a bitch...and so is Lyme...no matter what struggles we are faced with, we can do it together, in forums like this one.

Special thanks to Jimmylegs and HarryZ and many others who kept me calm, somewhat sane, and informed on how to deal with chronic diseases.

You guys have my utmost respect and admiratiin for what you go though on a daily basis.

My next journey is to see a Lyme doc in the States (im from Canada) to start treatment for this long road ahead.

You guys are in my thoughts and prayers...everyday.

Cathy

[Youarethecure]

No reason to leave us ! lol

Its got to feel great to finally have an answer.... and I am not too familiar with lyme but I hope its less severe and you will be better off. Either way, an answer has to feel awesome.

Best of luck

[jimmylegs]

glad you got your answer w, and best of luck going forward - keep taking good care of your body so that it can fight the best fight hope you check in again some time to let us know how you go

[grandsons4]

To Wondering; I joined this site in August of 2013 on behalf of my adult son, who was diagnosed with MS in January of 2013 after experiencing MS-like symptoms for the first time in Nov/Dec of 2012. After considerable research, he and I became, for lack of a better word, "suspicious" that Rebif should immediately be prescribed as the initial line of treatment. Further research indicated the high degree of uncertainty concerning both the treatment for and etiology of MS. Together we determined that he would embark on a treatment protocol centered on a low-risk/high reward framework while we continued our research. Ultimately, he was, as you, diagnosed with Lyme disease, and is now being treated appropriately. My view, as a layman, is that Lyme is MS, as much as MS with etiologies of Cpn, EBV, clostridium perfringens, and perhaps numerous others, so qualifies. In my opinion, it would be a loss for this forum to lose any information your particular "MS" experience would provide to others with Lyme-predicated MS. I am also replying to your post to ask you how you obtained your diagnosis of Lyme.

[Scott1]

I agree. Don't go now. This is your chance to define your experiences with Lyme. How did you get it, how it manifested and how you got rid of it are all of interest to us. Too often we put the focus on the "sclerosis" rather than the "multiple". I think it is many layers of things that are going wrong and your bugs are just one example of what can affect us. MS is not a homogenous set of symptoms. Think how valuable it would be if someone like you asks questions of this board and a chorus of voices could answer as one and say "that's probably lyme" or EBV or a nutional disturbance and so on. What will you say at the end of your treatment if you find that "yes,it was Lyme but I still have these other issues". It's fantastic that you have a diagnosed treatable condition but your story is more valuable to the rest of us now.

Regards

[Wondering]

Thanks for all the responses, and to be honest, I wasn't sure if i would be accepted on this forum anymore since learning of my Lyme disease. I am humbled that you guys want me to stay and share my story...so here it is...

February 2014 my girlfriend and I took a trip to Cuba, had a great time, came back and all was well. About 3 weeks after my return i started to get burning pain in my feet, thought I may be diabetic so went to the doc for blood tests...which came back normal...no diabetes. Then about a month later the numbness started, first in both legs below the knee, then spread to the right side of my body. Panicked, i took myself to the ER, thought I was having a stroke. Had a cat scan and numerous other tests, all came back normal....fast forward to March...dizzyness, weakness in arms and legs, vibrations in my body, and loss of appetite...went to neurologist, had mri, all clear. Neuro suggested i see a tropical disease doc, since this all started after my trip and she feels i picked up a bug. So while i waited to get in to see this "specialist" i began to do a ton of research and all came back to Lyme. Tested negative in Canada...but if you know anything about the ELISA test, it is very unreliable as they only test for certain strains. Was advised by 2 women I met to send my blood to Igenex Lab in California to get properly tested. I did that and my tests came back positive for band 31 and a few others that are highly specific to Lyme disease. Sooo...i am currently on a waiting list to see a lyme literate doc in NY, as there are none that can treat in Ontario. This is a very controversial disease and very hard to diagnose and treat. Once i get to see this doc, i can be prescribed the proper meds and hopefully start to heal.

I guess the big indicator for me was that i am sick all the time...its not a matter of flare ups, it is like having the flu, throw in some weird and crazy neuro symptoms and joint stiffness like ive never felt in my life. Lyme and Co (co-infections) can run rampant in your body and make you feel like u wanna die, and believe me, it's crossed my mind .

Treatment is different for everyone depending on how long you've been infected and if you are considered "chronic" or not. I dont recall ever getting the famous bulls eye rash, but ive learned that only 20 % of people ever get that. I'm assuming I was infected in Cuba, but it could have been in my own back yard. Ive met women from around my area that were infected at their cottages and while gardening. It does exist in Canada, despite what the "experts" say.

I would love to chat with anyone who has any questions concerning lyme, and yes, ive heard it can lead to MS, Parknsons and Lupus...so i guess i kinda sorta still belong here .

Thanks to all that took the time to read. Pls msg me if u want further info....im sure there are symptoms etc that i have left out, there are simply too many.

3-4 month waiting list to see the Lyme doc, so im trying to eat well and take care of myself as much as possible until then, but it looks like i may have to be off work for a while since im so very sick.

Cathy

[Scott1]

I'm glad you decided to stay.
Did you get checked for co-infections such as EBV? Does fatigue (as opposed to just being worn out) trouble you?
Fatigue= body feels like its made of wet cement, a constant need to sleep but it doesn't refresh you, exhausted by any exertion etc.

[Wondering]

Hi Scott,

Forrunately i do not have fatigue,which i know can be crippling. Hopefully i can get treatment before that sets in. Fun fun ! I will also be tested for co infections, bartonella, etc.