Questions for current Lyme sufferers.....

Hi Teambear,

Welcome to the forum. Sorry to say that what you are going through is quite typical for Lyme patients. The disease is hard to diagnose and good treatment is not easy to find.

The result from the standard test is useful -- not every Lyme patient gets a clear test result.

Please have a look at our "New to Lyme?" thread at the top of the forum. There is a great deal to learn about Lyme and this will get you started on your research.

I would strongly encourage you to seek out the help of a Lyme Literate Doctor affiliated with the International Lyme and Associated Disease Society. They will treat your Lyme disease thoroughly and get you back to full health.

Would it be possible to have your family doctor begin your treatment until you get an appointment with a doctor. You are looking to get help equal to that laid out in Dr Burrascano's Treatment Guidelines -- the link to download that is is in the thread mentioned above.

Please come back here with any questions you have!

I also waited about 2 months for the first appointment with a LLMD. I personally would not wait 2 months to see a standard infectious disease doctor who is not specifically considered Lyme aware. In a lot of cases, I think you will find that they will not be willing to help you and will dismiss your concerns relating to Lyme or give you inadequate treatment.

I had suspected Lyme for years and ignored it. Then the symptoms came on really strongly years later. Initially I hesitated to go to a LLMD. There is a lot of conflicting information online. Plus having doctors tell you that you are making things up makes you doubt yourself.

I took a family doctor's advice first and had tons of tests for most conditions. Almost everything came back normal and then I was referred to either a rheumatologist or an infectious disease doctor. The infectious disease doctor refused to even see me (even with the family doctor trying to convince him over the phone) because I already had 28 days of doxycycline. I then went to the rheumatologist. Initially I thought maybe he could help. It was a big mistake wasting time waiting over a month for this appointment! He was condescending and completely dismissed me without even speaking to me for more than 2 minutes as if I was making everything up. Plus he charged over $500 for his 2 minutes of arrogance.

The family doctors, infectious disease doctor and rheumatologist were not willing to help me when 28 days of doxy did not work. I continued to get worse. They seemed to think I had suddenly developed an eating disorder which was causing my problems. I am a person that NEVER goes to doctors. In this case, I knew there was something seriously wrong and yet nobody would help me. I now think it's better to go straight to a LLMD if you have ANY suspicion of Lyme.

The wait for a LLMD will also be long. You might call the office and see if there are any other MD's, PA's, NP's or ND's in the practice that can help you sooner or at least begin you on antibiotics or start testing if necessary. Often times, the other doctors in the practice won't be on the LLMD list, but sometimes working in the same practice as a LLMD, they have enough knowledge to get you started and can see you more quickly.

If you have had symptoms for a month, I think it's extremely important for you to get treatment quickly before the infection progresses to an advanced state. Once I got in with a LLMD, I didn't have a problem with scheduling future appointments.

Wow! I'm amazed you have all had strikingly familiar processes just to be diagnosed. Hopefully you are all on the mend and feeling better. This forum has been a big help. Although I haven't been fully diagnosed yet, this has been encouraging to know others have been helped. Thank you all for your responses, it is really appreciated! I will post after my tests next week!

Yup, same doctor run-around here, for 4 long years. The first referral I had was to a rheumatologist. I had a 1.5 month wait and while waiting began to panic as symptoms mounted. Once while feeling rather desperate, I called the office and explained my situation and almost begged them to get me in sooner - nope, you just wait like everyone else. When I went to that appoint, other than bringing along a several page outline of my symptoms and past history in case it was relevant, I was calm and let him lead the appointment...I was new to the doctor run-around and trusted he would at least do what I was paying him to do. He was condescending almost immediately, did some blood tests to apease me and told me there was nothing wrong with me. In the letter he sent to my family doctor (which I read in part from the open file left on the desk when he stepped out of the exam room) that "specialist" told him I was "very anxious" and obviously there was nothing wrong with me and "do not refer her back to me." Obviously, my frantic call to the appointment maker desk while waiting for that appointment had been noted in my records and had more bearing on his decision than the actual appointment and "exam" if that's what you can call it. He barely touched me or physically checked me over in any way. That was my FIRST and far from the only upsetting appointment with ten different doctors and specialists over 4 long years time before I found an alternative MD who diagnosed me. At that point I had NO idea it was LD because I'd had multiple negative LD tests and was guaranteed I did not have LD. Then there was the allergist who got thousands of dollars from me (the treatment was not covered by insurance) leading me to believe it was all allergy related...another long story that I won't get into, but caused me to get a second opinion after nearly 2 years of treatment and the same tests over and over at every appointment, even when I clearly scheduled a discussion ONLY appointment, and realized it was NOT allergy related at all. Well, I believe the LD caused my allergies to be worse, but all the problems were not caused BY allergies as the allergist said.

It is truly appalling what is happening all over the country with LD. I live in the midwest and it is no different here. My current doctor is fine with my LD diagnosis, as long as I don't want to discuss it with him or expect ANYTHING Lyme related from him. Nice. I currently have NO Lyme doctor as the doctor who diagnosed me left her practice. After 9 months on antibiotics (when she left), I have been treating myself with alternative treatments. I feel I am back to normal now, but I've been working on this for nearly 2.5 years now, mostly without a doctor.