posted
I understand Keebler. He knows who my LLMD is. He can pull up all my tests done (as it is done through the hospital he is affiliated with so my insurance will cover it) and it lists my LLMD's name.
I told him I could get him the information or someone in my family could if I was unable.
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Keebler
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posted
- I see no issue with testing done being in your chart. Actually, some of the Monitoring kinds of testing will show that your LLMD is taking certain precautions for safety of your liver, etc.
And, with infection testing, that, too, though that can get really tricky if the IDSA standards are put to it.
I'd keep testing done to the monitoring or other kinds of chronic infections or other tick borne infections, not lyme.
You would never really need another lyme test, anyway. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I was just nervous that my PCP does have the information on my LLMD due to the testing my LLMD has ordered.
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Keebler
Honored Contributor (25K+ posts)
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posted
- Well, I'd not fret as that's been done and it's understandable - but keep any staff out of it. Don't mention lyme to any nurse or anyone else there, certainly not to any other doctors.
Keep it as simple as possible from here on. Testing is far different than handing over a protocol.
Just don't let your PCP talk you into any repeat tests for lyme.
Hopefully, your PCP is to be trusted - just keep it to short conversation in private. He may be okay but it's hard to know. Over time, as you (hopefully) improve - and will take time - your PCP will see that your LLMD is good and on track.
There may be a time in the future to open up. What I would do is share some ILADS training information with your PCP. And, if there is an ILADS workshop he could attend, that would wonderful. There are ways to help him expand his view of lyme without getting your LLMD too involved.
ALWAYS ask your LLMD first before you share other details to come. This seems like the best way to handle that. He may know your PCP and he can determine what would be best to share. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler for all of your help. This whole thing is just so confusing. There's so much information on the internet about lyme's disease.
Even LLMDs are listed as being lyme doctors and different protocols they use. So it is all so hard to figure out.
I have to have a biopsy done on a lump under my armpit that is not going away and an endoscopy due to difficulties swallowing and food getting stuck.
Unfortunately esophageal cancer has been in both sides of my family. So caution needs to be taken by way of getting tests done to rule this out.
The surgeon and my doctor needs to know what medicines/supplements I am on as we try to see what is going on.
This whole thing is just so overwhelming and scary.
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Keebler
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posted
- Ask your LLMD when to stop Rx / supplements prior to the procedures.
If there are some that you need to stay on, get that list and of course provide it to those doctors who need to know to check over.
All this is done in advance so that will take some of the pressure off, I hope.
Also, sometimes after surgeries or procedures, steroids are used to reduce inflammation.
Steroids can make lyme MUCH worse so they are best avoided. Ask your LLMD about what kinds of things you should know and what should be conveyed to your other doctors. -
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Keebler
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While there can be various reasons for this (including lyme, itself) . . .
You might need to change the type of magnesium / dose. If you aren't taking any magnesium, it may be that it's depleted (common with lyme).
Magnesium often helps relieve swallowing issues if caused by spasms. Again, your LLMD will know more about this. All good LLMDs are very familiar with the issues of magnesium depletion with lyme.
Some types of magnesium are better for that - and the dose has to be at least 3 x day, never all at once as that's won't absorb and it too much for kidneys.
posted
Thank you so much! You have given me wonderful information as I wasn't sure what I should do as a result of all of this.
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Keebler
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posted
- Oh, I don't want to make you "hide" lyme or your Rx.
If your LLMD says you need to be on some closer to or even during procedures, just be firm that "here is what I take"
FWIW, your PCP is likely okay just keep in mind that his boss may not be so don't broadcast it.
And, I do think the surgeon would benefit by knowing you are in treatment for lyme. They may not "get it" but it is important they know so just approach it as your LLMD suggests.
Being firm, to the point and low key likely a good plan.
" , , , biopsy [to be] done on a lump under my armpit . . ."
IF you could afford for any tissue from the biopsy to be sent to IGENEX for tissue testing for lyme, that would be great. Your LLMD would have to order it, you'd likely have to self pay (though if Medicare, that MIGHT).
IF Igenex can do a tissue sample it might just be a good thing to do. But do not let any regular labs do this, they don't know how, etc.
You would need good prep for how the tissue sample would be prepared, shipped, etc. The DAY OF THE WEEK might need to be considered from the date of tissue sample to the date of tissue testing. Freshness of sample matters so prep instructions need to be considered.
Lyme can often show up in lymph tissue.
And lyme could also be making lymph tissue harder / cyst like. For those who have had this happen, often proper lyme treatment can see the harder cysts sort of "melt" in time.
Although there could be various reasons or more than one thing going on with the cyst -- still, converse with your LLMD prior to making any decisions / plans. This is VERY important.
As lyme is known to hide out in lymph tissue, any disturbance of that would need to be met with adequate precautions. -
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Keebler
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Summary: The bacteria that cause Lyme disease appear to hide out in the lymph nodes, triggering a significant immune response, but one that is not strong enough to rout the infection, report researchers. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I will definitely see about getting the tissue sent for lyme testing. That would give me some great additional information! Thank you for that suggestion.
I spoke to my LLMD this evening and feel much better about the whole thing. We have a game-plan for my procedures.
I appreciate all of your help on this matter. Have a great weekend!
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So I never even considered that to happen. 
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