posted
Been on new babs treatment for 8 weeks. Zith, Mepron, Art. Added the Art a couple of weeks ago and it's been heck since. My doc says to take it every day, thought I know people here say pulse?
So when do you know when to trust the doctor or your own research?
After reading that Coartem could interact with my beta blocker, I called and ask the LLMD. He then scratched the Coartem for now. Now I find myself checking everything he prescribes for interactions. Paranoid or smart?
Just had a full work up at cardiologist, and everything came back normal. Even suffered through a positive stress test for a week before going for a nuclear and it being perfectly fine.
Today I had a follow up with the cardio and my BP was high. The bottom number only, it was 95. It's never been high before, but he prescribed BP meds. I'm only 24 and not overweight. Took it on my own machine tonight and it's 100/77. (hoping it is accurate, as it read 118/77 at one point and 96/70 at another)
I don't want to keep adding meds to my daily routine, but I don't know what is best anymore. Is BP med something I can easily stop?
So How do you, personally, know when to question?
Posts: 94 | From Tennessee/NY | Registered: Feb 2012
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posted
That's a tough one. I think with this disease and the coinfections, you have to be your own advocate and research all that you can and ask your LLMD questions.
I also worry about it sometimes.
My LLMD told me that you have to pulse art because your body builds resistance to it (something about enzymes).
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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posted
I would say that you really have to trust your intuition. If you really do not feel right about the treatment plan, then you should listen to yourself. I have been really lucky in that I found a LLMD that I trust, and I have been able to let go of needing to do my own research. I interviewed a handful of doctors, until I found one that seemed like a great match. I have been with him for 1 1/2 years.
And even though I really trust him, every 6 to 9 months, I reevaluate my treatment and my experience with him to make sure he is still the right doctor for me. There are so many differing treatments that from one doctor to the next, they wont come up with the same treatment. But if you trust your doctor, you can kind of let go of things. AND, even if you have the best doctor in the world, they are only human, and so I think it is always a good idea to double check reactions and combinations to make sure it is a safe combo.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I trust no doctors anymore. They're too busy most times and not fully paying attention to every detail. You can't concentrate when you're thinking about your next 20 patients that day. You have to take care of your own needs to survive.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some doctors prescribe artemisinin EVERY DAY. That's the way I did it and it was more tolerable.
Others pulse it at higher doses for a certain number of days with time off.
Either way can work. Your doctor likely considered what he thinks best.
About BP - your readings seem erratic, which is common with lyme and during treatment.
I would never consider adding ANY major Rx without consulting with your LLMD, at least by phone.
There are many other ways to address BP, too. Rx is the last resort as there can be side effects.
Your LLMD should be made aware of your blood pressure shifts.
Your support supplements might need adjusting.
As for trust, read: CURE UNKNOWN by Pamela Weintraub for insight into the complexity, combination, rotation of individualized treatment.
If you are not confident in your LLMD, consider others. But there is nothing - nothing at all - about treatment that is easy. Sorry.
Getting through it, though, will have benefits. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by agmorgan: Today I had a follow up with the cardio and my BP was high. The bottom number only, it was 95. It's never been high before, but he prescribed BP meds.
Hmmm, you had ONE high blood pressure reading, and he's already prescribing meds for it?
Do an experiment. Take your blood pressure twice per day, on each arm. After a week of this, post the numbers here.
Write it all down, dates, times, left and right arm. Sometimes people have very different pressures in the right arm versus the left. If you're having symptoms, like a bad headache, make a note of that too.
This will show if there's a pattern. Many people have "white coat syndrome," where their blood pressure goes up in the doctor's office.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I think it's smart to double check everything.
I pulsed Art. I just stopped taking it on the weekends.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I think the best approach is to do your own research, and run it by your LLMD. A good Dr won't mind you asking questions-so long as it is done respectfully.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
The fact that my LLMD uses muscle/energetic testing and I have been feeling consistently better in the last year has helped me trust him.
Muscle/energetic testing isn't perfect, but I feel that we have avoided a lot of wrong medications and wrong dosing because of it.
Also, my doc is very respectful of any ideas I bring to him from my research. I can't tell you how many times he has muscle tested me for things I think I have or treatments I think will work just because I asked about them.
Have a call in to my LLMD to see what he thinks about BP, and have also started a log since I got home yesterday from the cardio.
Carol in PA, yes my BP is almost always normal. It was a little high on the bottom once before after I had taken a Voltaren for pain. Doc told me this can raise BP so I stopped. This time, I happen to have taken two Advil the night before and it was high. I told him this as I thought maybe it's the whimpy pain meds doing it. He still wrote the Rx...
Waiting to see what my LLMD says.
Posts: 94 | From Tennessee/NY | Registered: Feb 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Advil contains Ibuprofen. That causes constriction of blood vessels (and why it can stress kidneys).
It can also cause high blood pressure, and even one dose can be excess for some people. Taking two may have been the reason for your experience. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For safer pain management, be sure your MAGNESIUM is pulling its weight. Type or dose may need adjusting. Fish oil, too, is essential for comfort.
You might also talk to your LLMD about CORYDALIS. Links here: --------------
posted
When you are taking your blood pressure.... Make sure that you are in the same position each time.
That you are sitting every time. Not standing, not laying down, not laying back in the couch. Your body position makes a big difference.
Also, Is the cuff at heart level?
Just figured I'd do some double checking there, as these things can cause great variations.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
PS on BP checks... I LOVE my new wrist BP monitor!!
SO easy to use!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Trust but verify.
I see a very well known LLMD and he wanted me to take Mepron with Alpha Lopic Acid. Dr. S says that is a no-no in his book "The Lyme Disease Solution".
I asked my LLMD about it and he said it wasn't a problem and the only thing I needed to avoid was CoQ10.
So..I'm avoiding ALA just as a precaution. I don't need it and it it helps Mepron work better so be it.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Lymetoo, what brand do you have and how do you make sure you know it is accurate?
Went to the pharmacy yesterday to see about a newer BP monitor, and the shelves were empty due to a recent recall. UGH.
bcb, funny you should say that. I'm on Mepron and my doc (who I should add works with a very respected doc and was treated for Lyme himself) told me to take CoQH-CF. I ordered the expensive suckers then read about Mepron and avoiding CoQ10 here. Don't know the difference between them. Guess that will be the next question I ask.
LLMD called and basically said it was up to me whether to take the BP meds. Didn't want to step on the cardio's toes, but said diastolic 95 wasn't a big concern to him if it isn't constant. It's what I was expecting, but sometimes a firm answer would help me out.
Thanks again for the link Keebler.
Posts: 94 | From Tennessee/NY | Registered: Feb 2012
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posted
Thanks manybites, helpful info. I tried to send you a PM, but your box is full.
Posts: 94 | From Tennessee/NY | Registered: Feb 2012
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