posted
My LLMD recently diagnosed me with Dysautonomia.
This seems to explain my episodes of tachycardia and difficult to control blood pressure.
Also, I find it very difficult to stand for longer than ten minutes at a time. If I attempt to stand longer, I get very lightheaded and dizzy.
Does anyone else have this disorder and is so what have you found to help?
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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posted
your not alone!!! i have had major prob. with
this too!! has actually gotten progressive since
sept, even before lyme tx. LLMD told me increase
salt intake (sea salts, pure salt) or try to
find salt talblets-- using a frech sea salt, cant
find the salt tab. yet and usually have help here
but 2 wks on my own so cant go to too many
places- not at grocery stores, pharacies or GNC.
also said get good suppport hose, lilke the ones
from medical supply store. you will need to
measure your thigh. to get right size.
also, dont be up for long, and if standing still
raise up on ball of your foot, then down, and
up, and so on. this increases venous return and
helps. i also cant bend over or get dizzy and
things start to go black..scary. my heart rates
goes from 85-165 or even in 180's at rest. if
i am up and moving around pulse gets high, i
sweat like you wouldnt believe and get very
short of breath now too. so, i have put the
kids on "pick-up" duty so i dont bend, i have
to change positions slowly. I pretty much have
issues with Central, periphearal and autonomic
nervous system. LLMD told me just because my
case is advanced and affecting several parts of
brain, was on immuno-suppressing meds for yrs.
even while was getting worked up i was on big
dose of prednisone and methotrexate, had about
5-6 wk of testing for MS and other neuro. (like ALS) before found out i had lyme.
neruo and LLMD are vauge about prognosis of this
resolving, other doc that is one of PCP- she was
in studies about lyme 20 yr ago, and she is one
who found it goes into the nerve cell and causes
demylination right in front of her eyes, so her
prognosis is that i will prob. have LOTS of
neruo. deficiets even after tx well. she feels
horrible for missing the dx., was seeing her for
3 yr now for knee pain, everything made worse,
now she gets the connections. but, she said
hopefully some issues will improve but the damage
already done will take forever to repair, the
re-growth of nerve/mylin is very slow. i imagine
you have prob. had this for very long time as
well. try salt, hose, and pumping legs up and
down, and dont bend over, change positions
slowly--i say the alphabet in my head or a
prayer, then move. i know my b/p drops 30-40 mmhg
from sit to stand. so take your time
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
I will definitely try the tips you mentioned.
Will the salt be bad for my already high blood pressure?
My LLMD seems to think I will have some improvement with this once I begin treatment.
It amazes me how Lyme seems to have such a negative impact on so many different body systems.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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posted
go with your MD advice on the salt,. my b/p
runs low. 104/60 sitting then drop to 84-50 or so
standing, if higher when sitting then drops more
when i stand..hope that makes sense?? the other
things would be good though. just a by thought--
the mo. before told me to add salt, he added
vit c at 3000mg daily when changed tx to iv rocphin and mepron/zith for babs..just a thought
seems kinda similar to the salt/c stuff but
mine originated from LLMD for different reasons
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
My child has babesia and has the POTS (Postural Orthostatic Tachychardia Syndrome) version of dysautonomia. (LLMD said that dysautonomia is common in tick illnesses.) Blood pressure is low and drops further when sitting or standing up. The hearts starts to race (tachychardia) to try to get the blood pressure up.
There are several different versions of dysautonomia. The best explanation I've seen is at this link Definition for Dysautonomia
There are several different drug treatments, but the first approach seems to be an increase in salt and an increase in fluids. (Gotta make sure there is enough blood to actually pump!) Human beings are basically hydraulic driven
Hope you feel better soon!
Posts: 170 | From New Jersey | Registered: Jun 2008
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posted
I have had vertigo for nearly a year now and it rarely goes away. I have also had issues with low blood pressure, orthostatic hypotension, slow pulse, etc.
My mother believes that I have POTS but I haven't been "diagnosed" with it yet. What type of Doctor typically diagnoses this?
-------------------- Lisa D Posts: 103 | From MA | Registered: Jan 2009
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What you described sounds like what happens with me. Also, my blood pressure can be unpredictable.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
A Tilt Table test is used to diagnose POTs.
A cardiologist should be present.
I have POTs and NMH.
I take florinef for the POTs.
It does help ease some of the symptoms.
However, I have good and bad days with them.
Lots of fluid. Try drinking a glass of water
Before getting out of bed.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I have dysautonomia also. When I first was dx'd my LLMD called it "profound." I have been treating it with florinef, proamatine and a beta blocker, and that helps a lot.
Recently it has worsened, and I have been seeing his associate, who isn't as well versed in treating it as he is. I see him again in two weeks and it's at the top of my list for discussion.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
A note on the salt. Real salt is excellent sea salt.
We also need salt for adrenal support and it is a natural broad spectrum antibiotic.
Also a great source of minerals.I buy it from Vitacost 1 800 381-0759
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thanks for all of the suggestions and ideas for helping me with one of the more disabling aspects of Lyme.
I do take a beta blocker but it does not seem to be helping to control all of the symptoms.
I will definitely be asking my LLMD about adding Florinef and sea salt to my treatment protocol.
You guys are great!
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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