What has POTS to do with Lyme Disease

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Yvonne
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What has POTS to do with Lyme Disease

Post by Yvonne » Tue 24 Nov 2009 11:38

My daughter is seen by a specialist on blood pressure and he is almost sure she has Postural orthostatic tachycardia syndrome (POTS)

She did the tilt table test last week and will become the results in December.

I could not find information about it in Dutch, only in English and on Wikipedia I read this :

http://en.wikipedia.org/wiki/Postural_o ... a_syndrome
POTS can be difficult to diagnose. A routine physical examination and standard blood tests will not indicate POTS. A tilt table test is vital to diagnosing POTS, although all symptoms must be considered before a final diagnosis is made. Tests to rule out Addison's Disease, pheochromocytoma, electrolyte imbalance, Lyme Disease, Celiac Disease, and various food allergies are usually performed
Does this mean that Lyme Disease can give the same symptoms as POTS ?
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

Fin24
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Re: What has POTS to do with Lyme Disease

Post by Fin24 » Tue 24 Nov 2009 23:12

POTS is a form of dysautonomia--a malfunction of the autonomic nervous system

Evan has this as well as "orthostatic instability" and I have adrenergic POTS + orthostatic instability + unspecified generalized autonomic dysfunction ( basically means "it aint working right but we arent sure why or how")

Dysautonomia generally has a genetic basis--a tendency or weakness--that is often time triggered by "stress"--that can be an infection, an injury etc ( physiological or medical stress, not simply aggravation)

Sometimes an illness can have similar symptoms but the tilt table is one of a few ways to tell if the sx are short lived coincidental to the illness or you truly have triggered the dysautonomia

the confusion is that the word "dysautonomia" can define the behavior--the inability of the body to control the autonomic system AND also the CONDITION of autonomic disfunction

just like " anorexia"--that can define a short lived bout of lost appetite OR the more serious psychological disorder of body dysmorphia

you can find out GOBS at a very reliable and valid info site
www.ndrf.org

be careful with specialists--many claim to have expertise but actually misunderstand it
like Lyme the treatment is often "managing sx" and is very individualized

dont let them tell you not fainting on a tilt table test means you cant have dysautonmia
the way the blood pressure and pulse changes--the patterns--those are the diagnostic features needed to be analyzed

You may have to rule out other serious illnesses, even if rare, since they can produce sx that mimic this condition--your wiki listed many; there are others a good specialist will know about

IF your drs are cooperative, here are the names of 3 places you can contact--the first 2 are very good at working to educate their peers/other drs and for working with long distance consults--you can look up their emails--when I was first dx we emailed them ALL for answers--they were very compassionate and offered which tests to take for other rule outs etc--we now see Dr Grubb every year ( my son and myself)

1. Vanderbilt University Medical Ctr
http://www.mc.vanderbilt.edu/root/vumc. ... c&doc=4788

Drs Biaggioni and Robertson especially ( this dept combines neuro and cardio)

2.Dr Blair Grubb cardiologist( he is a bit less available since his own bout of kidney cancer and wife's brain tumor the past 2 yrs)
University Toledo (ohio) Medical Center
http://utmc.utoledo.edu/clinics/hvc/team.html click blair grubb
Beverly is his very capable NP


3. Mayo clinic Minn
Dr Philip Low- neurologist
http://www.mayoclinic.org/bio/10190929.html
( be careful with this one--he is always looking for guinea pigs and often refuses pts that dont fit his current studies!!)



also, Dr Christopher J Matthias in the UK is respected

an excellent article to start is this describing the types of POTS etc
http://www.medscape.com/viewarticle/522421_3

good luck and if you need more info or help PM or email me finrussak@aol.com

your last question about Lyme giving same symptoms??
Lyme disease and any other illness can have sx a lot like dysautonomias including POTS--one type--and it can trigger dysautonomia to then be a condition on its own

Dysautonomia by itself wont signify Lyme and not all with Lyme will have these sx
I guess like Diabetes---sometimes an infection can alter blood sugar and go away when infection improves
and you can also have bad blood sugar control by itself

you cant really say that Lyme causes diabetes but it MAY trigger a weakness or propensity already there
( at that point any infection may have triggered something about to happen)

good luck!!! I hope they are able to manage her condition
(also...make sure you and she become familiar with things she should avoid--caffeine, some meds,even OTC like benadryl--antyhing affecting the cholinergic/anticholinergic path actually-- etc --can all make this worse)

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Yvonne
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Re: What has POTS to do with Lyme Disease

Post by Yvonne » Wed 25 Nov 2009 14:58

Thank you very much for all the information.

I can't concentrate very well on English at the moment (have the flu) but will look to all what you wrote better later.

Fin24 wrote :
POTS is a form of dysautonomia--a malfunction of the autonomic nervous system
Her doctor told her that of the autonomic nervous system but not about dysautonomia.
When I look on wikipedia than I see that she has all the symptoms that are mentioned there except of the seizures :

http://en.wikipedia.org/wiki/Dysautonomia



Fin24 wrote :
an excellent article to start is this describing the types of POTS etc
http://www.medscape.com/viewarticle/522421_3

I looked there quickly and saw this :
A recently recognized and important cause of secondary POTS is due to the connective tissue disorder known as the joint hypermobility syndrome (JHS).
She is hypermobile.


Fin24 wrote :
good luck!!!
Thank you !

Yvonne
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

Fin24
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Joined: Sat 8 Mar 2008 20:14

Re: What has POTS to do with Lyme Disease

Post by Fin24 » Thu 26 Nov 2009 1:17

the hypermobile makes the Chiari more likely adding to the POTS and also may be affecting the seizures

I too am hypermoble/EDS and thats why they think I developed chiari and my vertigo and other sx too long to list

has she had brain MRI and have they looked specifically for "tonsillar ectopia"?? thats where the cerebellar tonsils are below the skull hole. This makes brain pressures and headaches and sometimes even seizures.

it may be like me--several things adding to each other

once you figure out which are the "all those things" maybe you can make a game plan to fix some and manage or improve others...I hope so!!!

Im here if you need me!! and please feel better from the flu!!!!

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Yvonne
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Re: What has POTS to do with Lyme Disease

Post by Yvonne » Fri 11 Dec 2009 15:07

Thank you again for your reply Image

has she had brain MRI and have they looked specifically for "tonsillar ectopia"?? thats where the cerebellar tonsils are below the skull hole. This makes brain pressures and headaches and sometimes even seizures.
She got several brain MRI but that was for the pituitary gland. She has no seizures.

She finally was diagnosed with POTS last week. Her specialist said to her that Lyme could be the cause.

She already took Beta Blockers and has to increase the dosis. And she must eat salty food.


Image
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

Fin24
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Re: What has POTS to do with Lyme Disease

Post by Fin24 » Fri 11 Dec 2009 21:02

Beta blockers?????

Yvonne
PLEASE look at the articles by Blair Grubb one of the 3top experts on POTS and all dysautonomias
he says that beta's will make them WORSE

matter of fact some of us cant do them at ALL, even at first

In Syncope: Mechanisms and Management by Grubb and Olshansky
pages 50, state that the studies showing Beta blockers as useful vary and many others show that
"In spite of blunting the circulating levels of epinephrine and norepinephrine,they may on occasion worsen the tendency towards syncope--provoking "presyncope"

In March 2005 article
Neurocardiogenic syncope and Related Disorders of Orthostatic Intolerance

http://circ.ahajournals.org/cgi/content ... 11/22/2997

there is a list of drugs that may/can CAUSE or WORSEN OI ( orthostatic intolerance which is what describes what happens when you have dysautonomia ( and POTS is one "flavor" of dysautonomia)

TABLE 1. Pharmacological Agents That May Cause or Worsen Orthostatic Intolerance
ACE inhibitors
-Receptor blockers
Calcium channel blockers
ß-Blockers
Phenothiazines
Tricyclic antidepressants
Bromocriptine
Ethanol
Opiates
Diuretics
Hydralazine
Ganglionic blocking agents
Nitrates
Sildenafil citrate
Monoamine oxidase inhibitors

go SLOWLY and if she is feeling worse in ANY way do NOT let the Drs tell you all she needs is to get used to them or needs more!! increasing doses may be DANGEROUS

Drs look in their little text books and it says " tachycardia, give beta blockers" " if they dont work, give more"
NOT GOOD for almost all of us with this disorder!!

one dr told me he was going to just give me more and more "until your body behaves the way its supposed to"--I left from him and found out after seeing Dr Grubb himself, that would have KILLED me!!!

show them these 2 references--there are dozens more like them!

as far as chiari--you dont need seizures at all--my son and I never had seizures
ask them to re-read the MRI's--the latest one and the one before--and ask them to measure if she has any tonsillar ectopy--the Dr can even do this if he can read MRIs (some can, some cannot)

and has she been evaluated for EDS ( Ehrlers Danlos syndrome) especially the joint hypermobile type ( I dont recall if you have said so previously--Im sorry)

that too is a factor making POTS more likely!!because the blood vessels are stretchy and dilate too much, so blood pressure drops and heart rate goes up even more than supposed to.

Yes any infection can trigger this so Lyme can indeed have done that

good luck and I hope they find meds that work for her
as for salty foods--she must increase fluids too--for some it helps, for others---not so much because then blood pressure goes way up then way down and the wide swings make you feel faint

Have a wonderful Christmas if we dont speak before then!!

Finette

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Yvonne
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Re: What has POTS to do with Lyme Disease

Post by Yvonne » Sun 20 Dec 2009 13:22

Fin24 wrote :
Drs look in their little text books and it says " tachycardia, give beta blockers" " if they dont work, give more"
NOT GOOD for almost all of us with this disorder!!
She disn't get the B-Blockers from this specialist but from her endocrinologist because she suffered from internal trembling in her whole body

go SLOWLY and if she is feeling worse in ANY way do NOT let the Drs tell you all she needs is to get used to them or needs more!! increasing doses may be DANGEROUS
She had a very low doses and increase slowly. She says it helps her. She lay down for almost a year and now she can sit about 1 hour, she can walk a little but can't stand still on one place

the Dr can even do this if he can read MRIs (some can, some cannot)
The endocrinologist was the one who did the MRI 2 times but he can't read them, only what lies in his field.
She asked him before if he could see white matter but he said he couldn't read them.
And a neurologist did a MRI but that was for the LD.

and has she been evaluated for EDS ( Ehrlers Danlos syndrome) especially the joint hypermobile type ( I dont recall if you have said so previously--Im sorry)
http://www.lymeneteurope.org/forum/view ... 755#p11755

Yes any infection can trigger this so Lyme can indeed have done that
Yes, I read that. Yesterday I saw this :
Parasites can transmit diseases, such as Chagas, that can cause POTS symptoms. Some patients report developing POTS after having Lyme disease.
But when is after when you have already LD for many years and been treated with ABX years later ?


And this :
Thyroid disease can cause symptoms that are similar to those of POTS.
She has Secondary Hypothyroidism and can't get it under control. She thinks that the POTS is because of this

http://www.potsplace.com/what_causes_pots.htm


I saw a lot about POTS on Youtube :

http://www.youtube.com/results?search_q ... type=&aq=f

Have a wonderful Christmas
Thank you. Wish you the same.


Yvonne
Listen to all,
plucking a feather from every passing goose,
but follow no one absolutely

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