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autonomic dysfunction and lyme

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Posted 6/13/2015 10:23 AM (GMT 0)
Hi Folks
I am very unwell and my major symptom is due to autonomic dysfunction , however I have never read anyone having such distinct symptoms as I have
Main problem is feeling terribly unwell sometimes nauseous and that feels like being tortured, it is horrible typical is the symptoms go up and down and diminish or increase in a few minutes or a few hours, sometimes this is accompanied by lightheadedness.reduced sweating , although i fainted on tilt table tes ti don't have the feeling I have orthostatic intolerance on a daily basis
I tested postive for lyme on elispot ,but I wonder if those symptoms are a seperate disease,although i got previous episodes of autonomic dysfunction that were limited in time after I had flu vaccinations.( 3x)
Now the dysautonomia is there on a daily basis ( with ups and downs as described above)It appeared suddenly after my heart bypass surgery.
Maybe this autonomous dysfunction has to do with lyme bug messing around in the brain and that it caused immune dysfunction leading to autonomic nervous symptoms.
I started treatment for lyme july 1 2014 with 6 weeks of rocephine IV, then 3weeks of azythromycine IV, I had to stop due to intolerance to the abx, then i did the eva sapi protocol , samento , banderol and detox, finally i started minocyclin 100mg since 2 weeks
No major improvement seen yet
my questions to the empatic crowd here are; I have read here that some of you do hava ANS problems
DId the autonomic dysfunction improve or disappear with treatment of the lyme disease
thanks for your kindness
jackdg
Posted 6/13/2015 1:21 PM (GMT 0)
Mine went away initially for a few months, but it came back. I too have Orthostatic intolerance, naseua, and also acidic reflux. It seems the more I try to do the worse it get for me.
Posted 6/13/2015 1:23 PM (GMT 0)
I had most of the symptoms of ANS for years before I found out I had Lyme but since treatment I have none of them right now. So IMO, it could be the Lyme infection causing your problems. It effects everybody different.

Hope you feel better soon.
Posted 6/13/2015 3:26 PM (GMT 0)
hello revive
when did your symptoms start to diminish ? was it soon after you startedtreatment or did you had to sufffera few months before it weened off?
Posted 6/13/2015 3:34 PM (GMT 0)
I've had some severe autonomic dysfunction - Extreme fatigue after minimal exertion, couldn't control my body temperature (it all depended on the ambient temperature), digestive issues, low blood pressure, low body temperature and others.

And yes, they have all cleared up with appropriate Lyme and other tick-borne infection treatments.

Have you seen the "Master Symptom List" for Lyme in the "New to Lyme? Start here!" thread? It lists all those things as symptoms of Lyme.
Posted 6/13/2015 5:06 PM (GMT 0)
Hi Jack,

I bumped on this article today, and the I saw the thread you posted today :-)

www.researchednutritionals.com/information.cfm?id=124

MarieLS
Posted 6/13/2015 6:32 PM (GMT 0)
Hello MarielS I am from belgium like you,
I was wondering how you feel now , have you improved alot since youstarted abx
thx jackdg
Posted 6/13/2015 9:19 PM (GMT 0)
Hey Jack

Treatment is different for everyone... The 'trick' is to find a protocol that fits your body...
I haven't gotten better with abx, nor with the herbal protocol I was following. I didn't get IV abx, except for IV Doxy for Yersiniosis. I only had oral abx for about 15 months.
But I have several things that make it difficult: I've probably been infected since age 11-12, which is a long time ago, starting to show symptoms since age 15. I've had Hodgkin's Lymphoma too, which compromised my immunity, I have long term effects from the treatment back then.
The thing is: I don't want to discourage you, because other people do get better on abx. It's a matter of finding what suits you.

I can't remember how long you have been treating? With oral or IV abx?

Marie
Posted 6/14/2015 3:47 PM (GMT 0)
hi mariel
I was diagnosed with cfs in 2001 and with lyme in june 2014, I started iv rocephine on july 1 2014 followed by IVazythtromycine but could not tolerate it after second week, Then i did not take anything for 4 weeks and started samento on 24 september 2014 , gradually upping the dose and added banderol when i was on full dose of samento since december 23rd . Continued up to now with sapiprotocol . My LLmd found that theherbs did not work for me as hehad hoped so he started me on minocyclin 100mg a day3 weeks ago . I askedfor 200mg but he finds 100. Have not seen any grand improvement yet , feeling lousy 90%of time
That is it for the moment, feeling as if nothing helps
OR willthe minocyclin help?
jackdg
Posted 6/14/2015 4:01 PM (GMT 0)
What are you doing for detoxing, Jackdg? Mino will cross the blood brain barrier so herxes with increasing symptoms should be expected - detoxing is our only way of controlling the symptoms because they are due to the increasing toxins in your body.
Posted 6/14/2015 4:49 PM (GMT 0)
hello traveler I take burbur and pinella 4x 8 dr a day
I also drink reishi tea and take a mycelium pill of reishi a day
Still building up on the reishi and drinking greater plantain tea
anything else I should do?
Posted 6/14/2015 5:24 PM (GMT 0)
I tried the EvaSapiProtocol for 1,5yrs, and didn't get any better on it either.
I think our dr wink knows abx well. It's a matter of finding something that will work for you. Mino didn't work for me (I reacted badly on it, a side effect, but others do well on it), but it's a good antibiotic, since it crosses the blood brain barrier. You feeling lousy is normal, herxing is hard...
Like Traveler wrote, try to detox as much as possible, it's very important. The Burbur and Pinella are definitely good, but you can do more. You can take Epsom salt baths, do dry skin brushing, take Alka Seltzer Gold, drink lots of water (dr says up to 4 liters a day) preferably with lemon juice in it. There's a list of detoxing methods in the thread on top of the Lyme page (New to Lyme?... start here!').
Posted 6/14/2015 6:23 PM (GMT 0)
hello marielS
how did u finally get better . was that due to chronic tonic and what is chronic tonic
and mariel S Can i send u a private email. Am I right you have been to DML our LLMD?
I would like to send you an e mail . If I am right you are frombelgium too?
Posted 6/14/2015 6:39 PM (GMT 0)
I'm not better yet, hoping to get it though... And hopefully with the Chronic Tonic.
It's a tea made of 11 herbs, or a tincture from these same herbs.

Of course, you can email me! We are compatriots and seeing the same llmd wink
My email is under my profile, or you can click onthe blue envelope under my name.

Marie
Posted 6/14/2015 6:52 PM (GMT 0)
I agree with MarieLS that you definitely should be doing more to help your body detox. We have some great suggestions in the "New to Lyme?" thread that sits at the top of the forum.
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