Lyme disease

[Fatima]

I was diagnosed with Fibromyalgia in Oct. 2019. I have recently started to work with a new fantastic naturopath and have tested positive for Lyme Disease but the test was done at Armin Labd in Germany, and the Canadian Medical system does not accept those results. I have subsquently tested in Canada and it came back negative. The Canadian test is not very reliable but I am stuck as I am unable to access the treatment here due to lack of diagnosis. Has anyone had experience with this disease and any advise on what I can do?
Thank you for your help.

 

[sunkacola]

Are you still experiencing symptoms of Lyme disease?
If so, you might just want to find out how long you need to wait for another test, and then go and get tested again after that time period has passed. If it comes back negative again, there may be something else wrong, and not Lyme.

 

[Fatima]

Thanks for your reply. I have some of the Lyme symptoms and these are the same symptoms they diagnosed as Fibromyalgia in Oct.
The Canadian Lyme test is know for not being very good and it does give a false negative more often than it should. I have blood tests that indicate that I am fighting something in the autoimmune spectrum but unfortunately those tests too have provided nothing specific. All I have that is specific is the German lat test from Armin Labs which is one if the best for Lyme testing.

 

[Mirador]

In the US the gold standard test is ELISA. If it comes back positive, the Western blot test can be used to confirm. Don't know if either of those are available in Canada, but it would be worth asking the doctor. Can they send it to a US lab?

 

[minilandrover]

Hello, i had lyme disease last year I went to my doctor and showed the red mark i had, and was prescribed an ointment !! they didn't think it was lymes disease, but after another week and the red mark getting worse, i returned, and was seen by another doctor, same thing was prescribed another cream then by chance i had a rendezvous with my pneumologue and i showed him the photos of the mark i had, and immediately he said that's lyme disease I had by this time a new patch of discolored skin with a distinct parchment look and feel to it
So why did the doctors miss diagnose the tell tale signs ?
Firstly my infection was caused by a bite from a tic that didnt burrow in to the skin it might have started to ,at the top of my leg, but i probably scratched my leg when i felt something and knocked it off however the tell tale red mark with a darker outer edge and a spot of darker red in the center as you can see from the photos, not exactly a text book infection but Lyme just the same, later came the patch of parchment skin on my chest in b/w so it shows up better.
So here is the question, have you got or had a similar mark on your skin, use a mirror to check everywhere ! or did you see a tic on you?
Have you had any new red marks or patches on your skin? Lyme often creates new patches of skin that have a distinct feel, even if they are not red or like the typical bulls eye mark . Note the middle picture, it has a darker rim on the left side and the darker spot in the middle.
A blood test can be positive and say, yes you have Lyme disease, it can also be negative and say no lyme disease detected, but that doesn't mean you don't have it. I did have better pictures but had deleted them...sorry.
Sadly most of the usual Lyme disease symptoms and effects are common in fibro patients, so you don't always feel different.
BUT Lyme if allowed to continue to propagate or whatever it does inside us, can lead to some nasty effects.

I was given a antibiotic ( not penicillin ) that i could take, and the red area and the parchment like skin area on my chest went after a period of 3 to 4 weeks. My only symptoms other than those i already have from fibro was the skin marks. 2nd on the list..
I have arthritis of the neck and receive treatment every week, and everything on the list except heart palpitations . are everyday symptoms i suffer from with fibro...
Had i not insisted to see more doctors and get LYME correctly diagnosed and treated, I could have ended up with a possibly fatal spinal cord infection, or to the brain... but the fact that i live in a forest surrounded by pine trees, a lake and animals that include deer and wild boar, and information tick warnings posted in my local pharmacy window, our local doctors thought they knew better, but didn't ...get a second opinion, and a third if you feel you have the marks that look similar, as the text book "bulls eye" is not a

lways that clear..

• Severe headaches and neck stiffness
• Additional EM rashes on other areas of the body
• Facial palsy (loss of muscle tone or droop on one or both sides of the face)
• Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
• Intermittent pain in tendons, muscles, joints, and bones
• Heart palpitations or an irregular heart beat (Lyme carditis)
• Episodes of dizziness or shortness of breath
• Inflammation of the brain and spinal cord
• Nerve pain
• Shooting pains, numbness, or tingling in the hands or feet.

 

[Fatima]

Hi minilandrover
Thank you so much for all the information you provided, that was very informative. I never had the bite mark. But I do have some of the symptoms and the positive test done by Armin Labs which is the top rated lab for this testing. Unfortunately the ELISE test in Canada came back negative and I am at a dead end. I want to get treatment here but have no access to it due to negative test. The Canadian medical system does not accept the Armin lab test. I am continuing my research and the fight for treatment but may have to go to the USA to get it. That is a lot more than I can afford.

 

[Fatima]

Hi mirador
Thanks for your reply. I had the first test here in Canada but it came back negative. The canadian test is well known for its false results. Unfortunately the Canadian medical system does not accept tests from outside the country and that is the problem because I already have a positive test done by the best of the best which is Armin Labs in Germany.
I need to treat this infection before it does more damage to my body but have come up to a dead end in Canada. I may have to look to the US for my treatment which I cannot afford.

 

[minilandrover]

For those that suffer from Fibromalgia, it can mask the Lyme symptoms, so unless you have some form of red patches then I would doubt you do actually have Lyme disease. This is why your doctor is skeptical. and all the doctors will suggest you results were falsely suggesting that you might have Lyme disease.
The Lyme tests are not very good and can give false yes or no's to being tested.
The skin changes are the real proof, and you say you don't have any skin issues. So as

However, a simple course of antibiotics will kill the lyme and you will be ok. and it wont cost anything more than a simple doctors visit.
It's not too much to ask your doctor to look at your test results from Germany and give you a course of tablets or injection. In my case despite having the red mark, my doctors didn't think i had Lyme but i knew i did because of the red mark and the very telling second area of skin on my chest, my Pneumologue who also treats allergies gave me the prescription for the antibiotic tablets that cured the Lyme. it didn't cost me a penny. One box of tablets that i took over a few weeks did the job.

Go and see a different doctor, and explain that you need antibiotics just to be sure. im sure if I had returned a third time to my doctor I would have been able to convince him, but he is young and in my eyes in experienced.

However ive been back to him since for my fibro treatment, and i told him that i was right and it had been confirmed and treated by another specialist. So now he knows that Lyme can have different appearances than the "classic" bulls eye. though if you had seen some of the other photos i took you can clearly see the outer ring and the center dot... But without any skin evidence, i would question if you do actually have the disease. Lyme always produces a local reddening and then a variation of the bulls eye discoloration, then it can spread to other parts of he body in a different form of red patch or patches and a different texture to the skin on the new area as described before.

why didn't the German doctor prescribe a simple antibiotic cure ?

 

[minilandrover]

My worst intermittent problem was waking up with paralyzed hands that took 10 minutes to get moving again.
These attacks would flare up over nite and last months, slowly getting milder, then WHAM it would come back again, but each time it kicked off again it was slightly less severe , but would last longer and after months of getting milder the minimum level of pain and disability would be slightly higher that in the last calm period.

Thankfully over the last three years it's got better, but tomorrow it could all kick off again, that's how fibro works.

However, a simple course of antibiotics will kill the lyme if you do have it and you will be ok. And it wont cost anything more than a simple doctors visit.
It's not too much to ask your doctor to look at your test results from Germany and give you a course of antibiotic tablets or injection. In my case despite having the red mark, my doctors didn't think i had Lyme but i knew i did because of the red mark and the very telling second area of skin on my chest, my Pneumologue who also treats allergies gave me the prescription for the antibiotic tablets that cured the Lyme. it didn't cost me a penny. One box of tablets that i took over a few weeks did the job. So why didn't the German doctor prescribe a simple antibiotic cure ? did he have doubt's ?

Without any skin evidence, i would question if you do actually have the disease. Lyme always produces a local reddening and then a variation of the bulls eye discoloration, then it can spread to other parts of he body in a different form of red patch or patches and a different texture to the skin on the new area as described before.
Sorry im sounding like your doctor, but what convinced you that you have Lyme disease? or the German doctor to carry out the test.