I'm sorry to hear about your hard time and I hope you will find here the comfort and the support that will help you through this.

The first step towards finding people that do understand what you're going through you've taken in the right direction, by joining a support group, that is here for bringing people with similar conditions together, providing support and information, and helping as much as possible in the battle against the disease.

Unfortunately, your story is not an exception: usually lyme gets undetected and undiagnosed for years, until it's too late to cure completely, and the damage it caused becomes permanent. And also, there are medical controversies on the character of the disease (mostly whether lyme can be a long-term, antibiotic resistant infection), on the testing procedures, and on the therapeutic conduit, so not getting the right approach at first is not at all uncommon.

Be sure that THERE ARE people that understand perfectly how you feel, and what this disease puts you through, even if they're not in your immediate entourage. Some you will even find here.

And don't lose hope - even though lyme's symptoms are very dramatic and debilitating, the disease can be perfectly curable. Especially since it's not long since you've started the treatment, and the infection is not too old, there are great chances you'd be off completely. What did the doctors say about your prognosis? Do you feel an improvement after the treatment? What exactly were your symptoms?

Please feel very welcome to share, talk and be around, and I hope to have you among us with tips and first-hand experience to share to other people with this condition even after you had put all this behind you.

My son has had Lymes for 9 years. You do feel like you are dying. You are on the right track. Make sure your ID doctor has DECADES of specialized Lymes experience. That will be my most important advice to you.

If your MD doesnt have that experience then you MUST move on to someone who does. I know the policitically correct thing to say is well - if it is working for you then stay with the ID doc etc etc etc.

It's not personal - it's your life. Do everything in your power to keep this disease from spreading to your brain. When it hits the brain, the doctors ( those not specialized in Lymes) will send you on a wild goose chase. It's not the Lymes - its depression, schizopherenia, the list goes on....

Lyme's mimics so many other illnesses....After 5 years of - gosh so many doctors -we finally found a specialist in CT. He saved Trey's life.

Don't be scared - Trey is well and knows what to look for regarding certain symptoms and will graduate HS next year.

You will be fine - just don't be passive - don't let it become personal with your doctors - if your aren't getting better - find another.......the MD's egos will be hurt but you will be alive and well.................

I am glad this forum was created...we all need alittle support in times like these......take care

Cindy

I am glad you have finally been diagnosed as you are moving in the right direction. Cindy's words of advice are accurate, though. As you have already found out, most doctors don't believe that Lyme is a real disease. Infectious disease doctors are probably the worst as far as treating this disease long enough or even believing that a patient may have active Lyme after a mere 3 - 6 weeks of antibiotic therapy. I cannot encourage you enough to find a lyme specialist or at least one that truly knows this disease. Do your homework and find someone good if you want to get better. Kim

You sound like me, I was sure I was dying and I thank God I found help when I did.

I am surprised an Infectious Disease MD is treating you, what does he have you on? How long does he intend to treat you?

Have you been tested for the co-infections of LD through Igenex?

There is so much to know about this disease and to get well you must have updated treatment protocols, with high dose antibiotics.

Can you tell me more about yourself and treatment? If you prefer to "talk" privately you can email me at at the contact link provided at my website (below).

Let me know your symptoms etc. If you want to be referred to an LLMD (lyme literate Md) I can also help you with that.

Take care.