Blood work for your LLMD ? Update

My reg Dr agreed to write out a standing order lab req for hematology, kidney and liver function tests to be done monthly.

I then send the results to the J clinic.

After a year and a half - I’ve just been told that my lab work is missing information.
It’s not - I’m getting the labs done that I always have... but I think the Nurse who called is seeing some gaps - ie it’s not a “comprehensive metabolic “ panel.

They want things like magnesium, ammonia, blood sugars tested monthly.
Which I think is overkill.
I can’t even get the Ammonia test done here - Twice when I was in DC I had it done there.

My reg Dr here has been so supportive but if I now have to add a dozen things to my monthly labs I’m not sure how she will react - well I just don’t want to push my luck - and compromise our relstionship. She’s only working part time now and has cut her patient load in half. I don’t want her to see me as a complicated patient and be cut from her list.
Plus I don’t want to pay a few hundred dollars a month for the labs that aren’t “covered” here.

I am already going to her later today to ask her to write a letter to Rev Canada saying I have to go out of my home town to get treatment - this is to explain my medical expenses we claimed.

skinny_joe said...
Do you live near the border with the US. If you do you could gets tests done through requestatest.com you would have to pay cash for it but you would not need a doctors note.

Not close enough to do monthly.

Involves at least 4 hours drive plus a couple hours on a ferry each way.

So you will get all the tests you are asking for now? The monthly testing is a good idea. I pushed for it and it happens.

The more you can get the more clear perimeter problems show, or potential problems. But I understand avoiding additional costs. It gets crazy.

My LLMD wants me to take two DesBio products for Brucella and EBV - $341.00. I know he is trying to do what is best for kidneys and me, but I chunk out $300 - $500 like it's nothing now. It adds up, and I have to back off somewhere but still treat.

Glad you are staying on top of organ status.

If you're taking any anti-folates (daraprim, dapsone, bactrim, malarone) you should be checking folate and red blood cells.

Bactrim (and possibly others) can affect creatinine and kidney function.

Ammonia, people often smell it, but you say you never got a smell from bartonella, so I can see why your doctor might want to check that.

I don't know what the magnesium is for.

The CBC and comp panels are important. Bilirubin and alkaline phosphate can tell you something about your liver in comp. I'm with you on others that can be excess.

Over the last-couple of years, I would guess I have spent 3-4 thousand dollars on tests that did not help, herbs I ended up not being able to use, follow up appointments that really weren't needed. Now I'm putting a stop to those type situations and make sure I research a herb or med before I buy. If a doctor wants hundreds to go over blood tests - not gonna happen.

That is why I'm now deeply considering a rife machine. Just learning about which one to buy at what price is a job. But there has to be a point where doctors or naturos get that when they pop off $200-$300 dollars, there is another aspect of life where there is another $200-$300 going out.

At the same time, critical tests and appointments should happen. At least that's my take on it now. I've spent my last wasted dollar. Over the years, bet is has been $20,000 spent needlessly.

When I started new antibiotics, I definitely did labs every week. I had bad reactions to malarone, flagyl, and bactrim, and it showed up on the blood tests.

Whether or not it's reasonable to do every week depends on your situation. If you're not taking any antibiotics that you haven't taken before, then once a month is probably sufficient.

This is the list of labs to be drawn every 1-2 weeks.


CBC with differential
ALT
AST
BUN
CR
Alk Phos
Bilirubin
K+
Glucose
Ca+
Na+
Cl+
C02
Total protein


In addition to these monthly:

CBC, complete metabolic profile, RBC magnesium, Ammonia,


1-2 weeks - not gonna happen...I don't even want to give this request to my reg dr. here.

Are you still on the "maintenance protocol"? Can they really justify the importance of the extra testing at this stage of your treatment with them?

Someone probably got ill so they changed their policy.

JovaLyme said...

Girlie said...

JovaLyme said...

Girlie said...
Jovalyme - I've had monthly tests done for 1 1/2 years with this clinic...and prior it was monthly with my previous LLND.
If something is out of range...then a repeat test is done....
1-2 weekly testing - really is overkill - i do not want to be going to the lab every week or two.

But most importantly, I can't get them done with their lab request...my regular Dr. (here in Canada) has to rewrite the order. This Dr. I have is prob the only one in my city who would be this supportive of my lyme diagnosis and treatment. She's a gem.
But, not sure she will be 'on board' with all these additional tests - and every 1-2 weeks?

I don't want to put any more added pressure on her.....if she gets fed up...I'm hooped.

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I hear what you're saying. Testing weekly is probably a little too much and, dare I say, quite costly?

I would like to ask my doctor for a monthly or quarterly one, which would be a great help and probably about right. It must be hugely helpful to know what you are up against though. I have absolutely no idea what my present situation is.

I had some routine blood drawn when I went to the emergency department a few weeks ago, but after waiting 7 hours and still not seeing a doctor, I gave up and left, so I will never know what the blood results were. It was 4am at that point and I'd had more than enough. I've had enough of the NHS in general to be honest.

Think yourself lucky you live in Canada. You sure wouldn't get that kind of testing done here that's for sure. Well, you might if you were a multi-milionaire or something.

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It's not costly - because most of it's free...except for the non - common ones...like magnesium...I'll have to pay a private lab for that.


But because it's free - then a lot of the docs won't give you all the tests that you want. They act like it's coming out of their pockets....
My Doc has been wonderful...I really don't want to ask her for lab req for tests every 1-2 weeks.....I feel this is going to strain our relationship somewhat. Plus - my arm will be a pin cushion...jeez!

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I'm not really familiar with the Canadian healthcare system, but I imagine it's almost certainly better than ours. I'd probably have to be almost dead to get those tests done and even then I'd probably have to get a court order, write to my local MP and then wait 6 months for the results!

Yeah, I guess doctors are quite busy people and it might be pushing your luck a little to ask for tests that frequently.

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Well, our healthcare is free....but I think the U.S. of A have some of the best surgeons and specialists in their fields.
Ours' is free. Not sure if it's better though.

she will just have to rewrite the lab order....but she might think it's overkill for all of them...and it's her 'name' on the lab req .



I just talked to someone from the J clinic...and told her I couldn't get ammonia done until I'm back at DC and she said it was fine.
I also said I can't do the others' every 2 weeks...and she said monthly would be fine...she could hear I was on the verge of tears.....I'm not sure why I was so upset....but it helped...lol...as she kept telling me to do what I can and not to worry...lol.

So, I'll take a look at them....maybe get some of them done just once - like that magnesium, sodium, total protein.
For monthly labs, I will do what I've been doing and add on glucose, bilirubin, and a few others

Anyone reading this - do you get these ones done? And why are they important?

- Ca+
- Na+
- Cl+
- Co2
- total protein
- k+

I'm thinking Ca - is Calcium; Na is Sodium, Cl - is that Chloride? Co2 - carbon dioxide - why that one?

And why total protein?

K+ that's potassium, right?

skinny_joe said...
Someone probably got ill so they changed their policy.

I'm not surprised. Dr J is prescribing daraprim, dapsone, rifabutin, metronidazole, bactrim, malarone... all of these have significant risk of side effects. Ideally everyone would be getting weekly lab tests, at least for the first few weeks.

I've taken some of those antibiotics and had significant side effects. And yes, I was doing labs every week at first. Quite a few of the tests came up abnormal.

Girlie said...
Just to clarify all those meds you mentioned (not all wouid be taken together) were not taken daily.
Both The D and D is only 3 or 5 days per month. Yes - per month.
Very low risk at that dose - (Im a worrier tho and when I looked up the methoglobanemia - or whatever it’s called - it freaked me out) but I never had a reaction to it.
At first I thought it was causing low kidney GfR and high creatinine - but it turned out to be the Rifabutin in the end.

Quinn - What tests came up abnormal - and which drugs were you on?

You werent pulsing tho - right?

I don't know if it was methemoglobinemia, but I got low iron and folate on malarone. It took about a week. A week after that, bilirubin went up (breakdown of red blood cells).

I got high creatinine from bactrim.

Rifampin elevates CYP3A4, which won't show up on the CMP. I felt it, and it mostly manifested as adrenal stress. I probably should have had cortisol/ACTH tested more regularly. Flagyl also messed with my adrenal function. High ACTH, and abnormal Na/K.

Vitamin B6 was high several times. This isn't a reaction to a drug, but the result of bacterial metabolism. It improved after a few months of abx.