Welcome -- but sorry to hear you need to be here. No one here that I know of is medically trained (including me), but we've done the Lyme waltz ourselves, so we hear you. You are asking good questions, and some comments are below for your consideration.
Lyme is often accompanied by other, separate infections such as babesiosis, anaplasmosis, ehrlichiosis, relapsing fever, tularemia, Rocky Mountain spotted fever (RMSF). Generally speaking, that bunch are referred to as co-infections of Lyme, meaning they aren't Lyme, but are infections often brought along by the same 'Lyme' ticks. It sometimes takes a while for a doc to detect the presence of any co-infections because the jumble of infections we often have can easily overlap or mask each other, and it sometimes takes a while for the doc to detect the co-infections (and sometimes docs miss the diagnosis entirely). Not saying that you have any co-infections, but it's something to ask the doc about: "was I tested for any co-infections? what was the result?".
The significance is that the co-infections and Lyme often all need not only different testing for confirmation of the infection, but they also often need different medication entirely. I had Lyme disease and babesiosis, for example. Each had different meds, which were given serially: first the babesiosis was treated, and when it was gone, then Lyme was treated. You might run the question past your doc to confirm what you were tested for, and if the answer is 'nothing else' or only some, then I'd consider seeing a second doc for confirmation of your diagnoses. Even good docs sometimes miss diagnoses.
Re your heart murmur: Lyme can indeed bring along problems with the heart, from what I have read. It's good to check out the possibility if not already looked into. (And if you didn't have the murmur when you first saw the doc, it's possible it could have arisen while you have been the doc's patient.)
[[ Side note: My memory was wobbly when I had Lyme, so I took notes during my appointments rather than rely on my dodgy memory. Your doc may not like you taking notes, but mine was fine with it ... he understood that Lyme can mess with memory. If the doc objects, just smile and say, "My memory is not what it used to be, so this helps me remember." How can he object? I doubt he will.]]
About the Holter monitor, that's good. Be sure you get FULL copies of all the test results (not a summary) that another doc in the future might find useful. I would smile and say, "Could I have a copy of all these tests to take home with me? I like to read it so I understand better." I think by law, the doc is required to give you a FULL copy of the tests. Keep all of them.
After you've seen the doc and have harvested as many pages of your file as possible ("for my records -- I'm forgetful so I like to read them over again later" or "my family likes to understand what I'm going through" or whatever works) then keep the copies ... just in case for the future. Can't hurt.
You say: "I do respond to antibiotics & anti-fungal/anti-malarial treatment for a month or two, but then I go backwards on many of the important symptoms: fatigue, muscle weakness, etc; and now heart issues." A few questions in that regard:
-- Does the doc stop the medications after a month or so? If so, that may not be enough time to be effective. Lyme bacteria need relatively lengthy medication to kill them off -- I had Lyme and babesiosis, and was treated for several *months* each, first for babesia and then for Lyme. Lyme has a slow reproductive cycle, and it is when the bacterial cell wall is dividing that antibiotics can best sneak in and kill the bacteria. I was treated in the range of perhaps 4 to 6 months per set of medications, one for babesia, and then one for Lyme. Lyme is a new and uncertain area of medicine in many ways, so different docs will likely have different approaches ... all the more reason to keep an eye on what is working and what is not.
Bottom line: I would want to know that the current doc is applying current standards for testing, diagnosing and treating *Lyme*. Lyme is not like regular infections that only need at most a few weeks of antibiotics to wipe out the infection. In your doc's defense, Lyme treatment is not a hard-and-fast set of rules on how to diagnose and treat, and as mentioned: I'm NOT medically trained.
... That said, tho, I would take as many of the previous tests as you have to a second Lyme doc for a second look. I also would not likely say anything to your current doc about doing so, to avoid alienating the first doc -- they can get touchy. I may be all wrong here, but Lyme is a tricky witch, and looking out for yourself is the most prudent thing to do. The more copies of previous tests you have to take to a new doc for a second opinion, the better for you: either you find a better treatment, or you confirm that Doc #1 is on the mark. Win/win.
*** Always keep copies of test results, notes, etc. in your own possession. You never know what will come to light later on that needs reference back to the older notes and tests. Relying on a file clerk in a doc's office needs a back up you keep for yourself.***
We patients are so accustomed to docs who all work off the same playbook, but illnesses don't follow that approach. Even if you need to pay out of pocket (that is, if you insurance won't pay for a 'second look' with another doc), I'd do it, and take copies of all existing tests to that 'second look' MD. Lyme is a new and tricky infection, so docs are learning new things about diagnosis and treatment all the time. Don't assume they all know the same things and have all the same testing approaches.
Peace of mind as well as confirmation (or correction) of the current diagnosis and treatment are the gold standard. It's what I would do.
Best wishes to you -- let us know how it goes and how we can help, okay?
Wow! What a grand, in-depth reply! And by the author I have read the most on this great forum and others- JackieCalifornia! Thank you.
Okay- responses to your comments in order:
I have been tested via Igenex for Lyme (positive); for Babesia (negative); and for Bartonella (negative.) However my very knowledgeable and caring LLMD wants me to re-test soon.
The murmur is newly discovered, and I will be informing the LLMD of the cardiologist's findings.
ANYONE who has dealt with a Murmur please comment.
Yes, I take notes, and politely converse with the docs about my many questions. My LLMD is great, but the regular docs do their best in the system they work in, but they are trained to think in specific silos of knowledge and make snap judgements about "...Lyme's effect on the heart is usually heart-block...I don't know of any other...." Meanwhile, I have printouts of recent NIH studies which chronicle endocarditis patients with Lyme etiologies.
Yes, good idea of copies of all tests. I try, but am not always successful due to phone wait times etc... I should do it at the offices as you suggest.
Over the past 9 months, has had me on 2-week pulses of antibiotics (tetracycline) and diflucan. Then changed to azithromycin with plaquenil. We will be adding Mepron soon, and returning to the tetracycline/diflucan mix.
Yes, your second look is a good idea. I need to look into that.
Thank you so much for your time. I will let you all know how it goes.
Glad we can help! There are many wise and experienced posters here, and the various experiences and treatments we have had is both bewildering and useful -- Lyme will (someday, finally) go the way of other diseases that have afflicted us.
I have been (and still am) puzzled by pulsing antibiotics. It seems to my [non-medical, untutored] understanding about 'pulsing' in general is that the meds hit the bacteria in waves ... but what if even some of the bacteria are snuggled all comfy in hiding places (like ligaments etc. which I think get low flow from the immune system and so on)? And also I wonder what advantage there is to pulsed meds in treatment? Why not just wipe out the bacteria by sustained bombardment via appropriate antibiotics?
This comes to mind because of the way antibiotics are used in less difficult situation, such as ... post-surgery, or an infection resulting from injuries. There is no pulsing in those circumstances, so why does Lyme get the favor? (My Lyme doc went full blast with antibiotics, with no let up until all the bacteria were dead and gone. It worked perfectly.)
I suppose I have two concerns:
-- by easing up on the abx during treatment, are the bacteria enabled in becoming drug resistant, and
-- what is the advantage of pulsing anyway? To soften up the bacteria with one med and then attack with another? I haven't kept up with reading on this issue lately, would like to hear thoughts from you and others.
I hope things are going well -- and that's the most important thing. Keep us posted! J
Thanks for the data. fwiw, I had Lyme and babesiosis, and my doc treated the babesia first with one set of meds, then went after the Lyme bacteria with different meds. One of the meds in each approach was a so-called 'biofilm buster' that penetrated the shield put up by the Lyme bacteria, and then the second med stepped in and killed off the then-exposed bacteria. Badda-bing!
Lyme is a relatively new and evolving bacterium, so it's not unusual that different docs take different approaches. Good for you for carrying on -- keep us posted.