Ok, I have Lyme- not expected!

Hi all,
It’s been awhile since I’ve posted, my last posting was after I had Botox done. So it turns out I have Lyme disease! I was very surprised at the diagnosis as I never really paid too much attention to Lyme and never thought it a possibility. I’ve started treatment, and my body feels stronger, unfortunately the neuro symptoms are still here with a vengeance, but it takes a long time to get well. So for those of you who are having a really hard time and not responding to treatment for VM, i kept getting worse and worse and was reacting to every medication given(here’s a list of things I tried that failed: chiari malformation decompression surgery, elastic stockings for POTS, cranial sacral therapy, physiotherapy, massage, countless herbs and supplements, Botox for migraines, amitriptyline, topamax, propranolol). Maybe it is worth looking into. If I had looked into this years ago I would have been way better off. Unfortunately, the tests for Lyme often come back with false negatives, so you may have to push for a diagnosis. I’m in Canada where it’s extremely difficult to get a diagnosis and receive long term treatment. I think (or at least hope) it’s easier for those of you in the UK and the US.

Interestign Ellen, there are a few otehrs in the ‘Other Illnesses’ section who also have a diagnosis of Lyme…how did you find out you had it? I hope you now get well. xxx

HI,
How did you get your results?

Kelley

Interesting outcome Ellen – and in Canada! I keep wondering how easy it is to get a false positive.

I’m going to add this to the list of people with a new dx and we’ll see how you get on over time. I hope this is the answer for you and the treatment works out.

Best S

Welcome to the mav/lyme club ;( hoping we can all get well soon!!

RE: How easy it is to get a false positive, I asked my primary care doctor this (he’s an internist) and he said not very, especially if you get a positive more than once and you have symptoms, fevers etc. (although many many people get false negatives because your body can stop making the antibodies they look for over time). Also, everyone’s symptoms are different and Lyme is a clinical diagnosis because of how faulty the testing is with all the false negatives.

I asked a consultant neurologist I saw yesterday about this and he said you would never get a false positive reaction on a Western Blot to a Lyme specific band as someone not exposed to Lyme would never make an antibody against a specific outer protein of the borrelia bacteria. However, band 41 and band 83-93 can both cross react with viruses and are not Lyme specific so if you had only these 2 bands on a Western Blot, you’d be considered Igenex positive but it could easily be due to infection with Epstein Barr virus of herpes or several other viruses. This is a limitation of the Igenex Western Blot, and it is stated by them on their results. xx

Lizzie, I agree. The bands I had were very Lyme specific and I asked if there was any way something else could set them off and I was told no as well. I had other bands not Lyme specific as well but I have EBV and HSV too. I also did not go through Igenex, I got a positive on Quest Labs but Igenex is more sensitive because they test for more bands and they also have a person interpreting the results, not a machine, so if they see a light mark they don’t say negative, they say indeterminate. That’s why it costs more to have the test done through that lab.

Hi Ellen,

I know this is an old topic - are you better? Did the Lyme treatment help? I sure hope it did :slight_smile: .

Hi, it did help, so much so that I forgot about this web group, I was surprised to find a question in my email to bring me back. I was in really bad shape: could not get out of my recliner(I couldn’t even tolerate sleeping in a bed because it was too much effort to lay down and get up- I needed the recliner to push me out), my one event of the day was a shower, couldn’t concentrate, felt like my head was buzzy all the time. The only way I can describe it (I know it sounds melodramatic but it’s the truth) was that I felt like I was being tortured 24/7 and my only escape was sleep, but even that was a light doze. So, I highly encourage anyone who’s not getting better to explore this option. I was always told Lyme is rare, but after I was diagnosed I started to dig deeper and found a whole bunch of people right in my backyard who also had it. Horrible illness but there is hope.

Hi Ellen,

that’s really great news. I am really happy for you :slight_smile:

Are you back to pretty much normal (including the dizziness)?

Finally, was your Lyme test positive through the regular labs like Quest or LabCorp or were they negative?

Did you end up having to go through Igenex for a diagnosis?

Thanks for responding.

I wish you the best health going forward.

Asli