posted
I'm just curious how often lyme is fatal... perhaps specifically wondering how often latent lyme (or chronic persistent lyme) causes death.
Perhaps death through just wearing out the body, or through advancing to the documented emergency things (lyme meningitis, lyme carditis, etc)?
I read somewhere that lyme is rarely fatal, and I hope this is true.
I know there are exceptions to everything, and people have died from lyme. But its freaky when you read stories of "they found lyme but it was too late..."
I won't be able to see a LLMD until early august at the earliest.
Posts: 200 | From Ohio | Registered: Apr 2016
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posted
So I either need to wait it out till august, or take matters into my own hands...
...and not sure how to do that.
I've been on doxy 100 mg BID for one month... I know doxy sucks for lyme, and that that dose is only bacteriostatic at best (not bacteriocidal), but wondering if that one-month course buys me any time?
Posts: 200 | From Ohio | Registered: Apr 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'll look back over the replies you've received and see if you have some of the links that empower you to, yes, take matters into your own hands - until you can see a LL doctor.
There are many approaches that can be very helpful.
1. if you have not yet, going gluten free is often a big help to reduce inflammation & pain.
2. Key supplements in this set, is much more detail, books, articles, etc. My word pad is not allowing me to highlight and grab to cut and paste. See if you have the link on "how to find a LL ND"
I suggest books by: HARROD BUHNER
Then ROSNER for RIFE
ZHANG - Chinese Medicine and Lyme -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bluelyme
Frequent Contributor (1K+ posts)
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posted
When you listen to jordan the park ranger on under our skin he said he did it all...dave martz stopped the wasting but has had two heart attacks .. neil spector needed a new heart after iv abx anyway...
Mitchell from md juct said it best ...there is no pancea. The cheepest work as well as the most expensive ...if you read studies and check the microscopy thread abx may or may not help...
look into bvt ,rife ,mhbot, iv ozone,mms, photons ,and essential oils...silver H202,do it all..you are in a fight for your life
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Keebler
Honored Contributor (25K+ posts)
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posted
- Major points to know:
Be sure to avoid steroids; avoid alcohol and processed foods / simple sugars . . .
avoid aerobic exercise (it can damage heart and stress kidneys - and stress adrenals and nervous systems) in presence of infection) . . . do what you can, though, for body movement with Pilates, Qigong, Tai Chi, water therapy, light weights, walking. Find enjoyable activities that don't over tax.
take on the very best of health habits.
This could be time where many good things come to your awareness, tossing out what's stress, grabbing onto goodness. There is so much to enjoy with nutrition in good delicious foods.
REST when your body tells you. Make SLEEP a priority and treat bedtime hour as sacred with dim lights, soothing time.
Find BEAUTY. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have gone gluten free (and feel slighlty better, but on a different frequency better, if you will; other frequencies are still bad).
I got my heavy metals checked, and they are all low (simply listed as <2, for instance).
Posts: 200 | From Ohio | Registered: Apr 2016
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WPinVA
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Member # 33581
posted
See if you can find a Lyme friendly functional medicine doctor to keep you going until you can get into LLMD. Yes, it is very good that you got started with doxy. It would be good to stay on the doxy until you can get in to the LLMD. Also call the LLMD weekly and see if they have any cancellations.
As for how often Lyme is fatal... I doubt anyone can tell you for sure... many times it was due to Lyme but the person never knew they had it, other times it may be part of Lyme but wasn't recorded on the death certificate. So stats are lacking. But anecdotal bottom line - It doesn't happen all that often. Most of us are still kicking!
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Oh, didn't realize aerobic exercise was damaging to the heart.
I do, however, need to get back into weightlifting more. That always made me feel better. Never liked aerobic exercise; just did it b/c I thought it was good for heart.
Must bring this up with my POTS doctor (a world-renowned electrophysiologist). He is in process of prescribing me a vigorous exericse protocol for POTS. I showed him my lyme test but he just shrugged. My other EP totally blew off lyme.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- POTS is very often connected with lyme.
You say:
"Must bring this up with my POTS doctor (a world-renowned electrophysiologist). He is in process of prescribing me a vigorous exericse protocol for POTS. I showed him my lyme test but he just shrugged. My other EP totally blew off lyme." (end quote)
Why, oh w h y ? would you go back to him?
You have information now that takes you out of his level of expertise. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
Page 27 - SUPPORTIVE THERAPY & CERTAIN ABSOLUTE RULES for self-care
Pages 31-32 - advice on a safe, non-aerobic exercise plan and physical rehabilitation. This would still be tailored to individual needs.
---
Some people may have trouble holding weights (due to tendon or joint damage), so weight training may need to be adjusted - or some other forms explored.
The key is to never get advice from anyone OTHER THAN a PT or trainer who is very much lyme literate. Others will not know that the otherwise good advice they might give could cause damage to someone with lyme / TBD.
Some other safe movement therapies / enjoyable activities: PILATES, QIGONG, TAI CHI
Never confuse that badge of being your best only with "vigorous exericse protocol"
with the success and well-being that can be achieved by a determined, thoughtful and wise approach.
There are some, at some stages of lyme / TBD, who could not move at all and massage was required for them. And, for those, this has to be okay but the judgment from others can be fierce.
Anytime a tired or ill person says they need to "rest" all kinds of judgment comes out of the woodwork. Listen to your body. Take a wise approach.
Some folks who are in stronger shape when first becoming ill or first diagnosed may be able to "do more" still, it's very important to check with an experienced LLMD about YOUR body, your set of considerations. -
[ 04-24-2016, 05:57 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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For those with TBD or other infections: some of the post here you will find what aerobic exercise does to the liver, the heart, the brain, etc.
AND what HELPS
As you start out with this it can be heavy detail at first, just scroll ahead to the posts that relate to you now.
I think it was you who mentioned a QT problem. If my memory serves and it was you, there are a few QT posts here very important for you, such as:
be careful around heavy beat music amplification and maybe even alarm clocks - if you have a startle reaction.
And MAGNESIUM can be excellent help for QT issues -- and a LLMD should know when you first see them (if there might be other things to explore, they will know how to guide you). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I agree that lyme is rarely fatal. I had it undiagnosed for at least 10 years before a doctor finally thought to test me for it. Still, I recovered totally.
So, don't worry about dying.
Doxy is generally not given in the summer anyway because it can cause a chemical burn if you go out in the sun. This burn is horrendous. So, lyme specialists rarely give doxy in the summer.
Spend your time reading the Burrascano Guidelines and studying them. The more you can learn about lyme before you see the lyme specialist, the better.
This way, you will understand what he's talking about and will perhaps understand his treatment approach also. Take a list of questions with you to that appointment and to every other appointment. Arrange the questions so that they are in priority order in case you don't get time to ask them all.
I hope you can go to a lyme doc who follows the Burrascano protocol. That is how I and at least 5 of my friends got well.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and a certain type of exercise as the patient is able to do it. (Weightlifting for one continuous hour every OTHER day--no aerobics.)
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Maybe find a functional medicine doctor to work on your body while you wait for your LLMD appt.
Functional medicine docs will look at gut health, heavy metals, hormones, krebs cycle, etc. Mine was also open to doing some work with Lyme and I know she has a Lyme patient. I didn't see her for Lyme, I saw her after Lyme was no longer an issue.
The Living Proof Institute is in Ohio near Cincinnati (near Ikea, if you know where that is).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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me
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posted
Sent you private message. Please make sure your private messaging is enabled.
Posts: 1431 | From USA | Registered: Mar 2015
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Keebler
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posted
- Good idea from sixgoofykids. A functional medicine doctor might also go by the term holistic medical doctor.
That center skg mentions, though, see if you can get in there and if not - ask them who they might suggest closer to you.
This is an excellent suggestion while you wait to see a LL doctor.
posted
Keebler, yes it was me who metioned not being able to take QT-prolonging drugs.
However, I do not have a QT problem. In fact, I was even tested for about 65 genes/mutations related to congenital LQTS, and all were negative. (Why I was tested is about 8 degrees removed from anything lyme-related). Not even any variants of unknown significance. And I've never had polymorphic VT nor fainted. Therefore I have no exercise, emotional/sudden-noise, or other associated restrictions.
I do, however, take a medicine assocated with prolongation of the QT interval, and also is an inhibitor of the enzyme responsible for metabolizing many QT-prolonging drugs. QT-prolonging drugs are, therfore, to be avoided if at all possible.
Cardiologist said if I *had* to be on one, I would need extensive monitoring. He said multiple combinations of QT-prolonging drugs are out of the question, such as are the treatment protocol for many TBD (such as plaquenil plus azithromycin, clindamycin plus quinine, a fluoroquinolone plus _____, etc).
On the other side of the coin, however, I am convinced that lyme has messed up my heart. Apparently I didn't have full-blown lyme carditis (negative cardiac MRI and numerous echos, etc), and never had documented paroxysmal AV block caught on a monitor (though I think I may have had it a few times), but have had some rhythm disturbances which are--if not clinically-significant--very disturbing at times.
Posts: 200 | From Ohio | Registered: Apr 2016
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bluelyme
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posted
Is your heart enlarged ,ie inflammation? .is there a bundle branch block on ekg?...do you have tachy or bradycardia? ... check out neil spector."gone in a heartbeat..." my counselor has pots and treated for a year iv went from 120bpm resting to 90 ..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Ok, I had inappropriate sinus tachycardia for about 1 week in December 2015. 125 bpm for no reason. This is when I knew something was seriously/clinically wrong, and led me to an internet blog where someone said lyme was the cause of such a symptom.
Anyway...
Left ventricular hypertrophy, very mild, probably from years of heavy weightlifting and systolic hypertension (this goes back 10 years). Cleveland Clinic cardiologists were not the least concerned about this particular issue.
What else? My cardiac MRI showed a circumferential pericardial effusion. My regular CCF cardiologist was not concerned. My EP was not concerned either, and said it was physiologic.
No inflammation whatsoever. Contrast MRI showed no first-pass hyperintensity, nor delayed hyperintensity.
Standard EKG is 100% normal.
Event monitor shows paroxysmal intraventricular conduction delay, which theoretically could be a "bundle branch block" (though temprary, or paraoxysmal), but this was also when I was on a beta blocker, whih is known to cause this.
Yeah I'm aware of the Duke oncologist who needed a heart transplant, and every time I feel inner stillness, or a weak heartbeat, or I need to jerk my torso to get things flowing, I get freaked.
But if three Cleveland Clinic cardiologists said I don't even need medicine, I am probably a ways away from a heart transplant. Even the Duke Oncologist had lyme for 12-15 years before he needed a transplant.
What I did have was myseterious chest pressure in November of this year which DISAPPEARED after two days of doxy, which I was taking for a sinus infection (don't read into it too much, I actually had a sinus infection at time, and sought treatment for that).
And I recently went skiing in Vail b/c I had a trip paid by family members and I couldn't face not going. I thought if I'm gonna die on the plane or on the mountain, fine; I'm not going to live with not going.
So I did. And I skied at 11,000 feet. I had fatigue not from sore legs, or shortness of breath, but inner fatigue.
I went to college in southeastern PA. You know what? I don't regret not putting on DEET walking to class or a party... why? Because I wouldn't. If I did it again, I wouldn't do that. Maybe I would for hikes or something, but not going to class.
Posts: 200 | From Ohio | Registered: Apr 2016
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bluelyme
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posted
Hmm..sounds like you have had the diagnostics...that percardial effusion doesnt sound good...i had some "good"neuros blow off small lesions because they werenot big enough to be ms ..
.to get the inflammation down iv curcumin has been helpful...borreliosis doesnt kill outright it tortures ,emaciates and destroys...i heard it said we wish it would some days but i think it a question of tolerance ..
the chest pain i have is on the right side and is intermittent..i just ignore it...doxy makes more cysts btw you may know http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/ burrascano's guidlines may be of use to you...you can self treat with herbs and abx overseas til your appt
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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posted
OP, I think you're all right. The cardio docs do their jobs -- if they thought there was something serious going on they would let you know.
In other news...listen. People get better with treatment. Actual treatment, in my opinion including appropriately dosed long term abx. Even the "gone in a heartbeat guy," who'd had untreated Lyme for over 15 years, ended his infection with high dose antibiotics.
It's NOT TREATING that kills people and gives them increasing debilitating problems. So don't get too depressed, eh? It's horrible news, it's a serious illness. You ( we) can get better. You too, blue.
Posts: 2057 | From Florida | Registered: Feb 2015
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