LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am not well - meaning I have picked up a virus or something and I have been sick for a good 7 days with sneezing, cough, sore throat, all that
Now I have pain in my back with a nasty cough and wheezing.
I have asthma so I think it is being aggravated now. I have been off of asthma meds for yrs because I changed my diet and haven't needed inhaler in long time.
My question(s):
My LLMD is far away. I can't get there. If I go see my old GP do I tell them I am being treated for Lyme, et al? or do I keep mum?
I would have to tell them about the antbx I'm on.
My worry is that the diagnosis will go in my computer file and I don't want it to in case I get insurance one day.
Am I being paranoid?
I hope i am explaining myself here- I'm having bad day
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No, you are not being paranoid. It's a rough dilemma.
If a virus, though, there is nothing any GP can do for you. That you are taking antibioitics, you might look up and see how broad spectrum the one(s) you are taking are.
The main question: exactly what do you expect your GP to do for you?
Wheezing is an important symptoms, of course and you may need to be seen with that as the main symptom.
I don't know how you will tell him other than:
"I know there there is much controversy about this. However, I've been diagnosed with lyme and am taking _________ as a treatment with a doctor who specializes in lyme."
If you have any test results that are positive by CDC standard, take a copy for them but black out the doctor's name. Do not share the name of your LLMD. If asked, say
"I will contact them and see if the two of you can connect."
Be sure to avoid ALL steroids if offered. Steroids can make lyme much, much worse. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, I say this with all kindness and understanding of how this must be for you with such symptoms and not knowing. Still, because lyme is so filled with symptoms a plenty that change so often, we have to learn what we can do for ourselves as much as possible.
Wheezing is important enough to be seen by a doctor, of course. Do go see a doctor about that ASAP. Please.
However, for other symptoms like you describe and can come and go, we all have to learn more about what we can do for ourselves.
MAGNESIUM is the number one helper for all the symptoms you describe. That is where I would begin.
What is your current dose and form? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Google: Himalayan Salt Pipe -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When you can, talk to those in area lyme support groups to find a lyme "friendly" GP if yours is not. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
OK. is even an asthma inhaler considered enough of steroid to be avoided?
I am not 100% thinking of right now - being sick- but also for in the future if I have something else... like an injury or influenza or whatever.
I am a worrier. I think about what ifs way too much for my own good. But having this virus has made me think if I ever need a dr fast what to do?????
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
unfortunately I have been neglecting myself.... I have found it extremely difficult to keep up with supplements due to nausea and I am so tired of swallowing water I think sometimes I am going to vomit because of that. Even now I am gagging at the thought of more water! (sorry for graphic)
but I KNOW supplements are key for even NON sick people.
My dr did not talk anything about anything except antibx.
He doesn't do anything else.
I am glad I got into seeing him ASAP, but I am thinking very much so to go to another- the wait is about 1.5 months.
so I need to get around to reading all the info about lyme, et al. It is just so hard for me physically and then I can now barely work like I need to and that is heavy on my mind.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not all inhalers are steroids. Web search to see what yours are.
Often, for emergeny inhalers, they are. And, no, the medication does not just stay in the lungs. It can also cause increased anxiety by stressing adrenal function that rather tipsy with lyme, anyway.
It could make lyme worse but if the matter at hand is your life, take the steroids in whatever form the doctor suggests.
But, yes, best to avoid those that are (unless, of course a life-threatening emergency and your LLMD knows as soon as possible so your treatment plan can be adjusted accordingly).
Again: if your life depends on a steroid inhaler during an emergency, that's an important consideration.
If for basic comfort, there are many other choices. A SALT PIPE would be much better choice, along with MAGNESIUM.
You say you tend to worry. I'm not really sure you are as these health issues are "heavy" and need to be faced. But, to be blunt, you will wear yourself out if you continue to worry. It's just that simple.
However, there is a huge amount of education involved with any chronic illness, especially with lyme. And some of what we learn along the way can be grueling.
If you responding in worry, stop. See if you can turn the tables and respond as student learning new information that can help you, the patient, better navigate the waters.
It may seem like a subtle difference between worrying and learning. Just keep in check with yourself to learn the difference.
And, at any point if you sense you are worrying, just stop that. It can take a while to retrain ourselves and recognize the subtle differences.
If you could add a LL ND (naturopathic doctor) or acupuncturist to your "team" that would be very good thing as you'd learn lots of "other" ways to take care of yourself and someone with so many more options to consider to help you feel better along the way.
Education is so vital to our survival. Knowledge is power.
As for "worrying" about steroids, that is not worrying, that is to be wise. Here's why:
posted
May I say, it's a big relief to have a GP I can talk to about Lyme. The one I see now was recommended by other Lyme patients, so I second Keebler's suggestion to check in with area Lyme folks and get recommendations.
We shouldn't have to hide from a doctor what's going on with us. My GP doesn't treat the Lyme but I can discuss it.
Posts: 13117 | From San Francisco | Registered: May 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
magnesium....yes, I keep forgetting. I have do have Peter Gillhan's Natural CALM plus calcium .
It is (for every 4tsp.) 600mg mag, 400 mg cal, 198mg potassium.
It you are not familiar, you make a hot drink with it. I forgot I had this in the cabinet! Will take right now
Ionic Fizz Super D-K Calcium Plus which has 300 mg mag with other things.
Do you know both? which is better?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
**If you responding in worry, stop. See if you can turn the tables and respond as student learning new information that can help you, the patient, better navigate the waters.**
yes, I know the difference, but on days like today I get so down and spiral out of control and forget!
How is this possible??? hahaha
I am a very creative person and I have a gigantic imagination.
I will try and "pinch myself" to remember to stay on track as the student.
My best friend said to me once I found out "so now you will become a Lyme expert!" she knows me well
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
RObin, yes, I will do this, but is does, sorry to say come down to money for me and I have a plan (no insurance) with my local network of dr so that I only pay a very small percent of the bill.
I hate to keep saying I have no money, but I am learning that lyme et al is a very expensive way to live!
I am trying to go one day at a time and remain calm.
then hopefully I can get lots done on days I feel good
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- These techniques have worked for me.
Worry for five minutes, then. Do your "holy moly" or "Oy, Vey" or whatever expressions will help you move out that worry energy. Walk it out, dance it out (wisely, of course).
Really, though, worry seems to be bound to fear. When we learn more and achieve some methods to manage symptoms, the fear can subside. Fear can paralyze, though, so that's why it's so vital to be able to settle down worry / fear ASAP.
Yet, lyme can CAUSE the body to feel fear more due to various reasons.
This all CAN be grizzly. Just recognizing that - not running away from it - can be empowering. So, it's a rough & tumble situation? Yep. Now what, then? Don't fear it, face it. And remember you are taking important positive steps.
And / or try this: Who's driving this bus?
We all have aspects of our personalities that are at the same time helpful & hinderance on our "bus trip". So, we listen to their "alert" but don't let them "drive the bus"
Our most balanced bit of ourselves has to remain at the wheel, in charge. That's the one that would say "thanks for sharing your concern so the bases are covered. Now, settle back and enjoy some of the scenery. Take a break."
Too tired to really explain that as it was explained to me. I make it sound a bit fractured but really it it intended to be integrating for our various personality aspects.
Still, believe me, I get a lot of "holy moly" and "oy vey" moments during each day. I say to myself a lot: "Yep" I may have to remind myself that my body is just not like the "average bear" -- Then take a breath and move along (in mind, even if not in body).
I do visualize being in another place often (and in another body!). That has some advantages as daydreaming IS a vital tool for every person. (I've tried and tried though and still cannot transport myself to a beach in the south of France.)
A sense of humor helps, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You asked about magnesium. I'm all out of steam so hope other will answer your question. Good detail here, too:
. . . Even a single dose of acetaminophen can reduce the body’s levels of glutathione, a peptide that helps repair oxidative damage that can drive inflammation in the airways, researchers have found. . . .
----------------
Dr. Kt has specifically advised those with lyme to NEVER take acetaminophin since it blocks glutathione in the entire body and that can be very detrimental. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lisa,
You say: "My dr did not talk anything about anything except antibx.
He doesn't do anything else." (end quote)
It's very rare that a real LLMD would neglect basic support methods that are vital to a patient being able to tolerate treatment. Not sure a real LLMD would, actually, but there may be some reasons, especially since they are covered by your insurance (which I know is the only way you can do this).
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Nutritional Supplements in Disseminated Lyme Disease (2008) - Four pages -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
**Yet, lyme can CAUSE the body to feel fear more due to various reasons.**
I read about the fight or flight sense made stronger by all this, and yes I must say that I have been wondering for years WHY I was acting this way about everything!!! AHA!!!
I need to get my whip out to control this, but now that I know I am master look out little buggers!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Keebler, for being "out of steam you are amazing!
thanks!!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Lisa, my very smart doctor told me that you would have to take inhaled steroids for 100,000 days to equal 1 burst of prednisone!
This is because the bioavailability of inhaled steroids like advair is so minimal compared to orals like prednisone.
Rescue inhalers are usually bronchodilators, they work quickly without steroids.
Breathing is necessary for life. Work with your doc to get your asthma symptoms under control. It's best to prevent flares and damage to the lungs.
Posts: 5237 | From here | Registered: Nov 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I go to my gp for general issues. I have learned to avoid lyme at all costs. Just isnt worth it
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I have been to several doctors recently about other issues and did not mention lyme. It worked out well because they were not distracted by side issues. Just so long as these things are really not part of lyme disease, it can work. I had strep throat and needed a different antibiotic, which did work for me, even though I am on pulsed abx for lyme.
Some people here will tell you this is the wrong way to handle non-lyme docs, but I have had it with lectures and ignorant disapproval from them.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
It depends on your GP. Some disapproving GPs will back off their little lectures if you make the boundaries clear. My husband told his GP that he has a Lyme doctor for his Lyme disease and that he comes to his GP for everything else.
His GP rolls his eyes and snorts during all mention of Lyme, but he lives with the arrangement.
Posts: 431 | From New England | Registered: Dec 2011
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Judie
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Member # 38323
posted
Could you go to the GP and not mention Lyme or meds?
Then get the GP's diagnosis and call the LLMD's office. Ask to talk to a nurse and get an opinion from the nurse at the LLMD as to what to do (or take if the GP prescribes something)?
I'm all for protecting yourself and sharing as little information as possible if you think it will come back to haunt you.
Not all inhalers are steroidal. I don't think Albuterol is a steroid.
Posts: 2839 | From California | Registered: Jul 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I share my Lyme DX when necessary. I care more about my health then their reaction to the fact that I have lyme. They may not agree with my diagnosis of Lyme but the good news is I am not seeing them for Lyme so I could care less what they think about lyme.
Maybe it is the area where I live but I have never had a MD react negatively to the fact that I have Lyme disease. In fact my gyno had referred me to an LLMD in the beginning of my being ill.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Thanks everyone.
all great points
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Catgirl
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Member # 31149
posted
I wouldn't hide the fact that you are taking abx (not that you were planning to). If lyme comes up, (which I'm sure it will when you disclose abx), tell your doc you follow the ILADS protocol. Most of them don't even know what ILADS is, and they back down. Just be firm about it and tell them that you are not there for lyme, you are there for xyz.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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