Lyme Testing?

[rob9920]

Well, now they are suspecting Lyme Disease. Over the past few months I have developed two odd rashes and was sent to a dermatologist. Upon review, she indicated that the rashes indicate either Lyme, or some sort of auto immune disease. They did some more blood work, and a skin biopsy, and the only thing that came back was skin inflammation, and more normal blood tests. I was told that blood tests for various diseases can however be false negatives, and could turn positive even several years later.

In anycase, the only test that came back somewhat abnormal was the Lyme test. It came back as indeterminate (1/2 way between positive and negative) . Canada unfortunately is well behind the world when it comes to Lyme testing as it isn’t that common here. They preformed the ELISA test and according to what I read on the net and what was stated to me by the doctor, it yields a false negative in almost 90 percent of all Lyme positive patients. In a sense, the test is almost useless. From what I read on the net, indeterminate in Canada is considered positive by most doctors.

Well, the doctor is now trying to see what kind of other test that can be done here in Canada, and she ran into a brick wall. I am being sent to an infectious disease specialist and currently waiting for my appointment to see what he can do. I am also being scheduled for a spinal tap as this is one other way to check for Lyme that can be done here in Canada.

Does anybody on this site have any insight on what tests should be done? I realize that the US has far more prevalence of Lyme and accordingly has more testing capabilities. Does anybody have insight on what could be done in the USA? I can perhaps look into going to the US for testing.

In anycase, I’m still hanging in there… Some symptoms improved. And some new ones appeared or reappeared. Newest symptoms is pain in arms, stabbing pains in legs and extreme itching in abdomen. Lips tounge and roof of mouth had gotten better these past few months, but in the past week resurfaced and now causing me grief…. Burning sensations, weakness in chewing, tongue and lips feel week/partially paralyzed and I mumble a bit… Loss of taste and smell yet again… In addition my right hand also got very weak… I had trouble zipping up my jacket, turning the car ignition…. But yet about 2 weeks later, my hand seems to have recovered about 80% of the lost strength…. Breathing issues are seeming to improve now after having a rough spell, but the pins and needles/buzzing is returning. Legs are also starting to weaken somewhat and the knee pain returning…. Also the light headed/floating feeling is returning after been absent for more than 2 months…

All I can say is that all this makes absolutely no sense…. But from what I read, Lyme makes no sense either… and the symptoms also fluxuate and have a tendance to come and go and then reappear…. I saw the nuro last week, and he is also baffled…. My single fiber EMG was normal. (I didn’t ask for the details) And he is now asking me to do another MRI with contrast this time. But said that he expects that the result will probably not show anything once again.

If this does turn out to be Lyme, I would have to say that this is great news…. Only on this website would you see such great news…. Well, here’s keeping my fingers crossed….

Buddy,

 

[judy8837]

See if your doctor will give you ceftriaxone it is used for lymes and it is in clinical trial for als.

 

[rob9920]

Thanks for the feedback,

Is this oral antibiotics? Is this used for treatling lyme in the latter stages? I was told by the doctor (as well as what i read on the net) that oral antibiotics won't work after a few months of being infected. If i do have Lyme, most likely i was infected in the Fall of 2008 during a hiking trip in a Lyme hotspot in the USA, and I started having some breathing symptoms a few short months later with major symptoms about 6 months later.

I was told that if i do have Lyme, I will need IV antibiotics for several months in a hospital, and they won't do this on a try and see basis.... they need proof via blood work or otherwise....

 

[joanne10818]

Hi With all the controversy over Lyme disease I would suggest you contact CanLyme Lyme Disease in Canada Symptoms, Diagnosis, Treatment Facts - wrongly named - Lime Disease lymes Disease lyme's Disease lime limes disease and find a good Lyme literate Doctor to check you out clinically. There are problems over most tests and even IgeneX tests which are good can miss 50%. If you already have indeterminate you need to follow up on this. Dr Martz was given ALS diagnosis and it turned out to be lyme Disease he opened a clinic and has had some successs treating ALS/Lyme Patients he presented at ILADS conference 2009. Many of the patients on the forum Eurolyme have so many of the symptoms you describe theirs are Lyme symptoms.

I have had Lyme and after 6 1/2 years am nearly 100% recovered although my symptoms were mainly arthritis and muscle weakness although some facial and peripheral neuropathies. The swallowing problems were by far my scariest but the pain was really bad too.

Good luck in finding something to help you but you are very unlikely to get a ID consultant to treat on long term antibiotics with the current controversy and you have not time to wait for the science to prove the nay sayers wrong.

 

[rob9920]

Thanks Joanne,

I did a search online and the Dr I have been referred to does have some experience with Lyme. I realize that no test is full proof and from what I read in US literature, the diagnosis should be clinical, and not solely based on bloodwork/tests. But I’m not sure they will do that here in Canada due to the controversy as you stated.

If they don’t treat me, I might consider going to the US. I’ve been in limbo now for almost 10months. Feel like I have to do something.,....

As far as symptoms go, Lyme actually fits my clinical picture, with the exception of me having a few minor symptoms about 16 years ago, and then resolving over a period of several months. My guess is that what I had 16 years ago is the same thing, but this time much more severe and many new symptoms which I never had before. I suppose Lyme can do many things, even go into remission and then reappear. Perhaps all the antibiotics from those regular yearly sinus infections I had over the years had kept Lyme at bay. I haven’t had a sinus infection in almost 2 years…. Perhaps it’s time to catch a cold… :-o

 

[joanne10818]

Hi Buddy I am pleased to hear you are becoming informed about Lyme disease. Through a chat line Eurolyme I am in touch with several people from Canada who have lyme one became so friendly she has actually stayed with me when she came over to UK to visit my LLMD and come to our LDA conference she was an ex brit. She is now consulting with a LLMD in Seattle.

As I say Canlyme has lots of useful information. I only posted here because I saw you in my google Alerts and because I know many patients on Eurolyme have Neurological problems with diagnosis of ALS and MS but improving on antibiotics whent hey were diagnosed with Lyme Disease. Clearly the earlier you get on antibiotics the better the chances of improvements. Obviously Lyme does not cause ALS cases but it sure needs properly assessing for something that doesn't seem to be the case at present.

I started a blog LOOKING AT LYME DISEASE
if you look down the right hand column you will find lots of interesting links into various websites and reseach.

Best wishes to you.

 

[rob9920]

Great website Joanne,

I see that one really needs to inform themselves and push the medical community since it seems that no Dr. even wants to get involved with Lyme. I saw a private Dr. last week and he stated that their is a very good chance that I have Lyme as I have some very distinct symptoms, but it will be very difficult to find anybody to treat me. He said that their are only 2 dr's in Ontario that are treating Lyme, amd one of them is being threatened of losing his license and will not see any new patients. I did watch the movie Under My Skin, and it's shocking one how the Dr's are being persecuted and sued by the insurance and medical community. It's no wonder nobody wants to treat Lyme patients.

At least I have found a couple of Dr's who seem to think I have lyme nd it's on the radar. The first dr wanted to start me on antibiotics but then backed off and said she needs to follow the government guideline and I need a positive on the Canadian test. I tested indeterminate in the Test, a test which has a 90% false negative rate. The private Dr said that indeterminate should be Taken as a positive. I guess will have to keep pushing. But it looks like Canada and the US might be like pushing against a brick wall.

Are their other options out there? The rest of the world can't be so anal. Is Europe any better? How about Asia?

Thanks,

Buddy

 

[kelly11016]

Hi Buddy,

I am going through the same limbo with lymes except i did test double positive by CDC standards. My GP started me on 28 days of IV Rocephin at 1 gram per day. I can say I have really not improved over the last 7 days since starting well I should say its been a rollercoaster ride. I'm guessing I herxed for a couple of days with fevers increased symptoms crazy blood pressure, and high anxiety. Please keep me informed of your journey and I'll keep you informed of mine. I am supposed to be referred to a LLMD after I finish this 28 days but really not sure who is the best. My family is willing to pay for the best. If you have any advice or anything let me know.

Kelly

 

[glen7058]

Lime test - squeeze a wedge into a Corona and drink. This test must be repeated often in succession to be sure of results.

{{now back to our scheduled program}}

 

[juliette11095]

Note to not starting antibiotics;
Tom had the same trouble, found the only doctor in southern ontario who knew anything about lyme and got an appointment.
The same hesitations were surfacing when I said "look at his alternatives, is giving him the medication going to kill him? If not, WHAT ARE YOU WAITING FOR?"

 

[rob9920]

Glen,

That sort of test would be more useful and cheaper than the current test we have here in Canada.....

Kelly,

I was told by the ID dr that I do have lyme.... All of my symptoms that didn't quite match up with MS, ALS are in fact fairly common Lyme.... And some are particularly exclusive to Lyme....

He started me on oral ABX and indicated that I will probably need to do a round of IV soon. I think that before you start the IV, you technically need to have a positive test here in Canada.... But then he said that I have ECM rashes, and only Lyme can cause that... Supposedly a ECM rash is more definitive than any blood test can be.

As far as progress goes, ABX have made me worse.... I started to nosedive about 1 week after I started.... I'm basically house bound.... Just hoping I start to feel better soon....

 

[iris10399]

I had a lumbar puncture to eliminate Lyme disease.

 

[kelly11016]

Hi Buddy,

I hate to hear you nose-dived. Are you taking Doxy...I wanted to kill myself on Doxy but it actually brought all my symptoms to halt last year even though it was short lived after stopping abx..

Rocephin is a cinch even though I have found myself where one day I can barely get out of bed, my bp crashing down to 98/60 where my norm is 120/83. I have also been having severe night sweats, insomnia, my foots numb every other day, both of my arms go to sleep at night while I am sleeping, and my heart rate is unusually high at 100 and having intermittent fevers. The other night i had just gotten one of my IV treatments and all of a sudden it felt like my body was attacking me...jerking, crazy twitching (even back in my eye), scalp pain, and embarrassingly my butt hurt really badly. (Dont laugh too hard).

My GP did a follow up with me on Wednesday and noticed my tongue had fasciculations and sent me back to my neurologist. Friday my neuro kept me in the office for 3 hours (I am so glad my neuro is my bff's husband)...he did an exploratory emg again on my affected limbs and said they sounded beautiful as always and no fasciculations..he looked at my tongue and said my GP was a quack and that there is no way to deem fasciculations of the tongue while it is sticking out. He made my bff (his wife) show me her tongue twitches when she stuck hers out.

So now that he has done 2 emgs on me..he made me do a spinal tap...he is convinced I have MS. My former neuro only did an MRI of the spine and lumbar of which i didn't know wouldnt rule out MS on the spinal cord so my new neuro said if the tap comes back positive we are going hunting for lesions on the spinal cord. That tap hurt so bad. He doesnt believe I have lymes even though I popped double positive by CDC. He said since I am showing no drastic improvements in my symptoms and given the very sudden onset of symptoms he is banking on MS. Idk...

I do have some good news..my twitching is almost gone. I may have 5 or 6 twitches a day now. I also have no more buzzing, vibrating, goosebumps, creepy crawlies only a slight bit. My speech is so much better omg..I sound intellectual again. Also I have been able to remember names, recall words, and think more clearly than I have in awhile. Usually I am calling apples oranges and forgetting my boyfriends name lol...My jello leg has left something to be desired but is in some way improving. No cramps or muscle pain just joint knee pain. Oh and no cold leg in 3 days.

I am most happy about the twitching ceasing..I hate it...I have still yet to see my fasciculations of which my neuro made me feel bad for making him sit there and stare at my foot forever and he couldnt see any either. He said that those are not fascicualtions. He asked one of his ALS patients to show me true fasciculations and i must admit I feel like a butt now.

In addition to my IV Rocephin...I am on

Magnesium 500mg
Vit E 1000iu
Coral Calcium

I mix these vitamins in a smoothy with bananas apples strawberrys all natural yogurt soy milk and drink it once a day. I also eat large amounts of spinach, carrots, broccoli, celery, and protein meats and eat fruits as snacks.

I also take Lexapro for my anxiety which has been most beneficial

Please let me know what is up with you and how you are and any tips. I have an appointment with a holistic doctor on Tuesday that is going to try to get my weight back on track.

All the best in this journey,

Kelly

 

[rob9920]

Irismarie,

From what I have read, a lumbar puncture test is is only about 50% accurate.... Hence it can't be used to rule out anything. I'm not sure how it is France, but here in Canada, only a few Dr's knows about Lyme and how to test for it, what sort of symptoms it could manifest, or how to treat it. My recommendation is that if you don't have a diagnosis, have severe symptoms that could be caused by Lyme, and EMG's/Tests that say you don;t have ALS, MS etc, Lyme is still a very big possibility. (It has to be something) In this case, you need to find a Dr. who actually knows about Lyme and investigate further. The alternative is whait and see?

A prominent Toronto Businessman just died a couple of months ago from Lyme, and his wife was talking on the radio about the lack of adequate testing. He had all the tests done on him and with his $$$$ and connections, I am sure he had a lumbar puncture test, and they still had no clue what was wrong with him. After three years and seeing Dr’s in Canada, US, and Germany, he was finally diagnosed in the US. He had Lyme.

Limegreen,

Not sure why anybody would think you have anything else other than Lyme. From what I gather, you have way to many symptoms for it to be MS. MS can cause a wide variety of symptoms, but not all at once! And some of your symptoms don’t match with MS, and certainly not ALS!

It can take months before you see improvements in Lyme. I was told that it will take me a year to recover…. You need to find yourself a good Lime Dr. and he will give you better insight and help calm your worries….

 

[kelly11016]

Hey buddy,hi

I think they are concerned with my severe hyperflexia, muscle spasms, and weakness progressing in my leg. Even though, as the days go on, my symptoms are becoming more systematic rather than focal. One thing they noted about my hyperflexia is that is is symmetrical so hence the order for the cervical and thoracic spine MRI to check for MS lesions or compression. Also one of my doctors, was caught up in a sticky situation in which my nurses friends husband was diagnosed with Lyme's disease then ALS only to be re-diagnosed with Lymes. By the time they got back on the right track with Lyme's he was already too far gone and is not being treated for Lymes and is bedridden. Which scares me but hey one day at a time. I have 2 clean EMGs thus far! I get one every time I go to neuro again very thankful my neuro is my bffs hubby He is putting his bets in MS he has many ALS patients and he says he would know instantly when sticking me with the EMG if I had LMN damage.

About the LP for Lyme's...it is extremely unreliable...we will use myself as a case example once I get my LP back...I tested strong double positive by LabCorp twice and I'll be willing to be anything my LP comes back negative for lyme's...any takers? j/k

Anyway I'm just taking it day by day and have found my supplements and diet change have made the most difference. Oh and something new...besides severe nightsweats....my lymph nodes are swollen and painful.