Since diagnosing Bb and coinfections is clinical and many symptoms overlap, how often do you think patients are treated for a long duration for something they don't have? I know it's always better to be safe and treat. But I can't be the only one that wonders about this. I have a positive on one coinfection but negative everywhere else but doc has me treating both...but I get the feeling he is not completely sure either.
Posted by painted turtle (Member # 7801) on :
I don't think anybody is sure about anything with all of this, it is so complicated and complex and the testing is unreliable.
The specialists who are treating with long term abx therapy are offering people some hope and they are validating a person's true experience rather than totally dismissing it like a duck would. This is a huge part of the equation for people like me who have been with lyme for most of my life and finally have a medical explanation or label for all of the pain, discomfort and strangeness.
I think the specialists have done studies to support their protocol. At the same time, not many studies at all have been done. We are building the plane as we fly and we are working together. I think the patient teaches the specialist as much as vice versa. It is an active study.
I think many of us tend to go all out with a black and white concept, rushing into the hope of a recovery and decent life from long term abx. And I think this is a little dangerous because we just don't know enough yet. So while it is a great relief to finally have an advocate who really truly not only believes you but has seen it before over and over and is familiar with it....but who, at the same time, is on the cutting edge of how to really treat.
That's my ignorant view. For someone as chronic as I am...and how these long term abx have effected me, and with all of the borderline confusions about is it the lyme, a coinfect, a side effect, a herx...it really is very very hard to tell.
Posted by seibertneurolyme (Member # 6416) on :
jwenny,
The doc is being paid by you -- you are paying for his advice. If you disagree with his treatment plan then it is up to you to speak up. Ask him specific questions -- "Based on your experience and my symptoms what are the odds I have this coinfection?" "Which symptoms do you think specifically relate to this coinfection?" Things like that.
Hubby's LLMD has told him that his tremors could be caused by Lyme, Babesia or Bartonella -- he just doesn't know. In this case the approach we have taken is to treat each infection one at a time to see what the results are -- still don't have any real answers -- hubby has a very hard time tolerating meds for all 3 infections -- still no real clear cut culprit.
You need to find a doc who is your partner -- someone you feel comfortable with asking questions. Not easy to do, but doc/patient relationships are very important to healing.
Unfortunately with tickborne illnesses there are many unknowns and both docs and patients are operating on intuition or educated guesses -- that's just the way it is in Lymeland today.
Good luck.
Bea Seibert
Posted by Aniek (Member # 5374) on :
Jwenny,
I agree that you need to discuss your concerns with your doctor. I also agree that there is often not a clear answer here.
The tests for coinfections are not perfect, so often doctors need to treat a coinfection without exactly knowing.
My LLMD always has me on something to target the Lyme, and then tries to add an abx to target a coinfection. So I never stop the Lyme treatment. She is also very honest with me when she is not sure about something. Doctors are people too. As long as I know where she stands, I'm comfortable. I prefer that to pretending she has all the answers.
Posted by jwenny (Member # 8831) on :
Thanks Turtle, Bea and Aniek.
I agree with all of you. The complexity of overlapping symptoms muddled with unreliable testing leads to a lot of uncertainty. My doc and I have had many discussions about this and he has expressed his uncertainty. He also says tremors can be caused by babs, bart or bb. And tremors is one of the symptoms which we are trying to address. I really think that this is the nature of the disease...the uncertainty...and I don't think any doc knows 100%. Guess I just wish we had better testing methods to know for sure. Just hate to be on high dose meds for prolong periods for something I may not have.
Best wishes and hope you all feel better!
Posted by LYMESCIENCE (Member # 9259) on :
Let me see if I can help clear things up for you. Co-infections are indeed a big thing. Let me share one example with you.
"B. microti antigens can trigger specific activation of T-cells and the infection can be effectively controlled by a Th1-dominant CD4+ T-cell response."
That is a quote from an article I found on pubmed. What is significant about this is that durring simulaneous infection with Babesia and Borrelia, the immune system will produce Th1 dominant cells. While this is Ok for Babesia, durring the natural infection of Borrelia Burgdoferri alone, the body produces Th-2 cells.
In other words, the immune sytem is changed, making it much more difficult for the body to kill off Borrellia Burgdorferri.
Now, let me state that it is my opinion that the ring leader of chronic Lyme disease is Borrelia Burgdoferri, and that the other infections are kindof taking a ride in the Lyme Disease car. So long as they are in the car, it speeds along with a full tank of gas. You can shoot the wheels of the car, and try to take out Lyme, but it just doesn't work, you must remove the passengers first before you can remove the car(Borrelia Burgdorferri).
As for co-infections, let me try to tell you my story. I was first put on Primaxin, and it did amazing things for me. The doctor asked how I felt, and I said, "better"
Then we tried Levaquin, and I felt better again, but it was different from the Primaxin, and like before, I relapsed again.
Then we tried Zithromax and Mepron, and once again I started feeling better, but the feeling was different from both experiences I'd had. I felt better, but different from Primaxin(Lyme Disease), and Levaquin (Bartonella).
Eventually, my physician and I saw the whole picture. We have three infections, with at least three different drugs that worked. They key was to cycle so that I can get to all of them, that way I could avoid the ups and downs of treating one co-infection at a time.
So one week I treat Lyme Disease with either Primaxin or high dose Rocephin, and I also take Levaquin because it seems to be a universal bennificial combination med for me. The next week I treat Babesia with Zithromax, Malarone, Plaquenil, Tindamax, and Bactrim. I also add in Levaquin.
This way, I find myself feeling better in each week, but differently. I find that for me, this has been the best way to treat all the diseases. I can't tackle them all at once because thats too much for my Liver and Kidney, but I've found that for me, I can't tackle only one for months at a time either, because the others creep back up and I find myself exactly where I started.
I hope this helps, and I hope you find remission. Keep hope, and keep fighting:)