Dizzyk, that’s interesting. Dizzielizzie who has also been diagnosed with Lyme tried nortriptyline and she found it made her worse. Sorry to hear about your joint pain, it is so difficult getting to the bottom of these disorders.
I have been ill for the same amount of time as you. I am on nori myself but having a bad patch at the moment so am thinking of getting Lyme tested via Igenex. Did you ask your GP to take the blood sample for Igenex then did you send it back to them via Fedex. I have just got the testing kit today so am trying to work out the procedure. Which tests did you order - Basic Lyme Panel $260 or Initial Lyme Panel?? …
Hi Jem, I got the full lyme panel done. Not 100% sure on what one. It’s $460. I kind of regret getting it done a little. I am not sure I can draw any conclusions from the Igenex tests. I have the medical profession telling me I don’t have Lyme and the Igenex tests are unreliable and people in Lyme forums telling me the Igenex tests are accurate and the medical profession are not be trusted It leaves you in a very confused state and I think half the battle with this kind of illness is the stress with not being able to just concentrate on what it is and try get better.
On the nori, I don’t think it’s uncommon for people with Mav to feel unwell with it. I think most drugs are hit or miss with migraine.
Here is another interesting thing on the Lyme testing. My friend who has been unwell for 10 years was diagnosed positive by Igenex (his was more positive than mine) two years ago. His doctor told him to ignore it. He did. He recently go diagnosed with an auto immune disease and is now finally making some progress.
DizzyK thanks for the info. I am really unsure what to do now. You summarise the dilemma very well. Can I just ask why did the medical profession tell you that you don’t have Lyme? Did they test for it as well or do they just not trust Igenex? Did they give any convincing reasons why you should ignore the positive Igenex result?
Also, your friend who has autoimmune disease, do they have the same symptoms as you? What is the treatment for that - medication?
None of this is an easy answer. The only useful link that I can offer you is one that is connected with real, current Lyme disease research occuring in an accredited medical university. The information here is balanced and fair, acknowledging what is NOT known, explaining the controversy, recognizing the confusion and explaining best CURRENT practice as best known as of this date in the medical and research world of human biology. All you can do is educate yourself as best as possible and make the best decision you can. Then, you have to let go and let God (or let go and just let it be, dependent upon your religious beliefs–or not).
I’m sure you could even go so far as to contact someone here to see if they could help you–worse thing they can say is “no–we won’t talk to you.”
Jem,the hospital did a igM and igG which came back negative. The tropical disease consultant said that showed there is no current infection. I could tell he didn’t trust the tests I was showing him from igenex. To be far my experience with the medical profession has been pretty awful. That’s why it’s difficult. It’s hard not to trust a medical person. The only thing I know is the stories I read about Lyme to fit my story. It’s difficult to find any other disease that covers all the crap I am going through. Especially the severe joint pain, low grade fevers, chest pain etc etc
Not sure of my next move. I keep changing my mind. If I pursue Lyme I will have to go to Germany. I live in Ireland. It will cost me a fortune (on top of the fortune I have already spent this year) and I have no idea if it will help.
Yes I know exactly what you mean, I don’t have much faith in the medical profession either. I have pretty much had to diagnose myself thus far and then the medics have kind of agreed with what I have suggested might be wrong.
Germany sounds quite drastic - is that for treatment? There is an LLMD in Cardiff if that is any easier to get to?
Maybe you should try some other migraine meds or pursue the autoimmune thing first and then if that fails go down the Lyme route as a last resort. Let us know how you get on, wishing you well x
Oh, I didn’t know there was a LLMD in cardiff. I picked up from message boards that there wasn’t much help in the UK. Cardiff would be a lot easier to get to for me I will check that out just out of interest.
It leaves you in a very confused state and I think half the battle with this kind of illness is the stress with not being able to just concentrate on what it is and try get better.
I will check that out just out of interest.