You are correct, there are no easy answers. I will not detail my own story here, but will tell you that I was sick, and knew I was chronically ill w/ SOMETHING for 2 years before realizing and learning I had lyme. During that time, from time to time, I looked up lupus, living near electrical wires, chronic fatigue syndrome, and esp fibromyalgia. From time to time, I looked up Lyme disease, never going into any depth, but kept dismissing it because I did not get the bull's eye rash.
Last year, a local newspaper did 3 articles on Lyme disease, and mainly chronic lyme disease. This is what made me realize I had Lyme. AT first I was excited that I had an answer about what was wrong w/ me. And then, as I researched, I realized all the controversy. I tried to make appts w/ all the Lyme Drs named in the newspaper articles. 2 were no longer accepting new patients, and I was put on another's '9 month' waiting list.
The first time I came to this board, I felt totally overwhelmed by everything here. Everyone here was so ill w/ so many things, and they talked about so many different treatments, and detoxing and every kind of co-infection. I remember posting some questions, while at the same time, stating that I would not be able to come here much. I did not want to get all involved in all this junk and controversy, etc. I could not handle one more thing to do! Plus there was NO WAY I was going to participate in IV treatments, thousands of dollars, and such! (still haven't!)
Still, even tho I was 'too busy', something kept bringing me back here. I learned about testing, what the tests mean and about all different kinds of treatment. I have learned a lot about the disease.
I still do not believe we have all the answers. And it would be TOO much to go into all the questions. Even DRs don't agree on everything -- even the Lyme Drs!
Well, now, after more than 1 year, an LLMD who takes my insurance and whose waiting list I have been on for over a year has finally called me and I have an appt the end of June.
As far as controversy, I will tell you this: He is a well respected, Infectious Disease Dr. The Infectious Diseaase Society does not believe in 'chronic lyme', nor long term treatment. Yet this ID Dr does, and is booked to the hilt.
The past few months, I have wondered why his waiting list for new patients wasn't moving along -- so I believed that he must not be helping anybody get well. WEll, I also just learned that he primarily works in the hospitals, treating AIDS patients. And he treats as many Lyme patients as he can, but as explained to me by his office, these visits are not short and he does not hurry anyone thru Lyme diagnosis and/or treatment.
So now I am excited! A real infectious disease Dr who diagnoses and treats Lyme! I figure if this guy primarily treats AIDS, then he must understand chronic Lyme disease.
I am told that because Lyme (and co-infections) are very controversial --- The Infectious Disease Society does not accept or believe in chronic, long term infection, nor long term treatment, ---then the reputable Drs diagnosing and treating Lyme have been affected by this disease -- either they have suffered from it or had/have a family member suffering from it.
It's a long, crappy road and I have given up 10 zillion times. But, too often, I can't take it anymore.
You have got to accept the fact that this disease, in chronic or late stage form, is not understood or believed in by many Drs. And there ARE many PCPs who believe in chronic lyme and who have seen the devastation, but who will admit they do not know how to order the proper tests, or interpret the proper tests.
It is quite evident that Lyme 101 is NOT included in medical school!
As for me, at this time, I am placing all my faith in this Dr, at least until I have seen him.
As for a couple of your questions: IF you have had Lyme for over 10 years, then it is a fact that your tests may not be reliable. And we can tell you why if you do not already know.
However, please note: As far as WEstern blots, there are false negatives, but NO false positives, unless the test is counting insignificant bands, and not the significant bands, and the interpretation relies on the number of bands, but not the INDICATIVE bands.
A regular Dr can order a Western Blot for you, BUT you must make sure he/she understands that this must be read within 24 hours. As the time passes since the draw, the less accurate it is. You may still end up w/ a test that is stated to be negative. However, the guidelines for this test may be too stringent to interpret a proper interpretation.
A lot of folks here, including me, have done a lot of research on the WB, and if you can get one done, make sure you request copies for yourself. Because we can at least look at your bands and see if there is something obvious that the lab may not be interpreting.
Does that make sense?
Another test that is said to be very (if not totally ) reliable is a CD-57. Because most insurance covers only certain labs, you may need to get your Dr to order this, and if your insurance does not cover that laboratory, you may have to pay for it yourself. This happened to me, but I submitted an 'exception' to my insurance company and they paid for a large portion of it because I wrote to them that my LLMD, who is not covered by my insurance, believed it had to be ordered in order to diagnose.
Important part of THAT bottom line was that I called my insurance company several times begging for an LLMD. And they didn't have one, so I had to go out of network.
Sorry, I'm realizing I'm rambling a lot --- BUT, I think you have to push certain things yourself. you HAVE to know what you are doing. My ins company was not able to refer me to a Dr who could 'diagnose and treat Lyme' (I called all the required ID Drs who ALL said 'NO') So I challenged them regarding the LLMD I went to and who they didn't want to cover. But because they could not give me a network Dr who COULD, they were kind of forced to cover part of my costs.
Sorry, I'm shot tonite, but please feel free to ask more questions. Everyone here is so happy and willing to answer as best we can. If you in fact have had Lyme for 10 yrs, then I am very sorry, because it won't be an easy road. AND I believe that if you do have Lyme, you're going to have to fight for yourself -- you CANNOT allow yourself to be diagnosed w/ stuff like MS if that is not what you have.
I highly recommend that you do what I did NOT want to do. Go start w/ the Newbie section. And the readings and links suggested there come highly recommended as well.
I believe in abx. But I also know that every single body is different. And I believe we all got Lyme for many different reasons, too. You will need to learn whether long term abx or a more 'natural' treatment is best for you.
Most important, I think you will be able to figure it out, but you must ask for what you need.
Deepest thoughts and regards to everyone here today, +Lyme