Accepting BFS Diagnosis: Journey to Recovery

[morgan100]

I'll try and be brief. I was diagnosed with BFS a few years ago. After many tests, and two neuro's, the diagnosis of BFS was reached. Over time, I put my fears away, I found worrying about twitching was causing anxiety, which in turn, caused me more symptoms. I accepted the diagnosis of BFS, and moved on.Slowly, over the past two years, the twitching was accompanied with spasms. Today, I rarely get any twitching at all, only spasms. The spasms are so severe, at times, I feel my rib cage is being torn apart. My toes and fingers twist, I have severe pain in my joints. Once or twice a month the pain is accompanied by a low grade fever. The fatigue I have daily is horrible.I’m barely able to function on a day to day basis, so I go back to the neuro. He sends me to a clinic that specializes in muscle disorders to rule any other illness out. The doctor was surprised at the change, again did all the tests. The doc said she is confirming the diagnosis of BFS, but is curious to such extreme fatigue and bone pain. She ran blood work, again, which all came back negative, again.I’m a single mom, and not working is not an option. I was lucky to gain employment where I work from home most of the time. I’m having trouble keeping up even doing that. Someone suggested to me to go to a private clinic, not covered under the Canadian health plan, and pay to be checked for allergies, bacteria’s, etc. The test results showed I had borrelia, at a 99% reading, which meant I’ve had it long term.Ok, so this test was a computerized Electro Dermal Screening. I took it to my Dr. who stated that he only believes in scientific tests, but because it shows these results, and stated my symptoms were similar to lyme disease, he’s booking me for an infectious disease Dr. That’s not going to go any where here in Canada.I know you are not Dr’s, I’m only looking for opinions. Are there others here with severe symptoms such as mine? Has anyone here ever posted that they actually had lyme and not BFS? It would cost me a fortune to leave Canada to be treated for Lyme… The anxiety of all this is making my symptoms much worse, I can’t get it under control,

 

[MeaganGranger]

I am so sorry to hear that you are feeling so badly I am pretty new to the board as well, so welcome! I am unsure what the "electro dermal" scan thing is, but I am glad that your doc is recommending you to see an infectious disease doc. I am not a doctor, but I know Lyme disease can be pretty crappy, and I have heard stories of people actually having lyme disease and not knowing for a long time or until after many many tests (which seems weird to me, when they can just do the blood test...). At least now you might be able to finally get some relief. Lyme doesn't go away, from what I understand, but it is completely treatable. Are infectious disease docs and specialist not covered under the national health care in Canada? I don't know how all that works, but it seems hard to believe that if your doc suspects you have it, it wouldn't be. If you still are not covered try and meet with your doc and the clinic you are going to and discuss your situation, there are many docs out there who will do what they can to work with you and your financial situation. If they are worth seeing at all they are going to care about what you can afford and what they can do to help! So ask! Good luck with everything and keep us all posted if you are comfortable with doing so!

 

[morgan100]

Thank you for your response. The docs are covered under the health plan, but the testing and treatment for lyme is not suffient here. Many people here are tested with negative results, but when they go via the US for treatment to do a western blot test, the tests come back positive. The cost is huge though. Canada's Eliza test doesn't work, and is the only test we have. As well, there is much controversy over the treatment of lyme here. Long term antibiotics not allowed here... I spoke to a homopathic Dr. who stated he could have me tested appropriately, and treat, but the costs are 'huge' $100's per visit.I wish this lyme testing never came up....

 

[AllGoodHere]

Hi Morgan100 - Sorry to hear that you are feeling so bad. There have been several people on the forum that have had (been Dx'd) with Lyme and if I'm remembering clearly, at least one was from Canada. Do a search here (on this forum) and you will find the posts - perhaps they will be helpful to you and you may also try a PM to the posters if they are still active here. In the meantime, do whatever you can to boost your natural defenses (rest, liquids, neutraceuticals) and be careful of the spasms....what I mean by that is to try to get the area to relax using heat, ointments (Flexall or sports creams) so you don't stress your body alignment too much and cause injury. Heating pads, hot baths, etc., can bring some temporary relief but I've had some experience with spasms and whatever works to ease things up is a good thing - it's not any permanent solution but just coping. Maybe some of the forum members who happen to also be docs can chime in....?

 

[Quickrider]

Hi MorganI am also Canadian and diagnosed with lyme by Igenex labs. I would like to know about the electro dermal scan. What is it / My Canadian test for lyme was negative and although the family MD referred me to an infectious disease doctor, he would not even see me unless I had a canadian positive test. I can't afford treatment in the US so I am just living with the symptoms and I'm not even sure I have lyme. Many people with lyme seem worse off that I dkay I have twitching, pins and needles, numbness, dizziness, ringing in the ears, difficulty swallowing, palpitations. I don't have spasms but my muscles do get very sore. If you are able to find a physician to treat you for lyme in Canada (BC), please pm me with the name as I am not able to get any treatment at all.Sandra D

 

[morgan100]

Sandra, if you have been diagnosed by a lab with lyme, I would be demanding treatment. Ask for another infectious disease Dr. Even though the treatment given here doesn't fix it, IV antibiotics will slow down the process. The only Doc I know that is left treating in Canada is from Nova Scotia I believe. It was a main topic of conversation on CTV am news yesterday. Here is the link: The test I had done was in Toronto, the place has been opened for a few years only. Basically, they say the computer can detect bacteria, and other things in the body. I was very leary, but I guess desperate. The thing that made both the doc and I surprised, the test showed the organs in my body that were not functioning properly due to lyme... and all was what I was having problems with. However, this test is not acknowledged as acceptable either....I honestly don't know what to think. I'm going to try out that lab if it isn't too expensive. Thank you for the name. If I get a positive, I'm getting treatment, I'll take the media route. I don't know what I have, but if it is BFS, something needs to be done to get it under control. Nothing works unless I'm so totally knocked out I don't feel the pain...

 

[Quickrider]

Hi MorganThanks for the info. There is a Canlyme website and the majority of people on there have either tested positive at Igenex or actually remember having the bulls eye rash. I don't know of anyone getting treatment in Canada. Doctors here have told me that BC has a state of the art test and if it's negative I don't have lyme. They basically implied that Igenex is a fly by night, not to be trusted outfit. Can any Americans jump in here? Is Igenex a trusted lab or are the results from there questionable? Sandra D

 

[morgan100]

The link I gave you said the doc in NS is treating people, but who knows to what extent. He's easy to find on the web, just google his name. It can't hurt to call him and see if he can help you. I'm frustrated... at least if I have BFS there is the opportunity of this all passing by what I've read. If I truly do have lyme... it's going to be a struggle to say the least.

 

[Quickrider]

There is a doctor in the Toronto area. You could probably get the name from someone on the Canlyme web site. Do you remember a few months ago, some doctor in Toronto had his office raided by the CMA and his files seized because he was treating people for lyme not according to prescribed treatment practices, which is one or two monthe of doxycycline. He was in the news but there is also another doctor who is more lowkey. As for me, I'm functioning okay and I can't really travel to another province right now.Sandra

 

[morgan100]

Thanks Sandra. I'll try the Camlyme website again. I have not yet been sent the link to the forum... I had not heard of a Dr in Toronto.