Daughter not better after many years of Lyme treatments (oral). Positive Western Blot. She has no energy (chairbound 95%).
A local cardiologist said her tachycardia was compensatory for blood pressure plummeting after 3 minutes standing (therefore, not POTS). He diagnosed orthostatic hypotension caused by dehydration (even though she drinks 2L a day), low blood volume, deconditioning, or unknown. She is taking Midodrine, huge amounts of water/salt, wears stockings, elevated bed. No improvement.
She stopped Lyme/Bab treatment this past spring (more tachycardia and even less energy).
Could her WB have been a false positive OR is Lyme/Bab the underlying cause (and still there)?
Anyone have Orthostatic Hypotension and Lyme/cos? Are you so exhausted that you are unable to function and must sit or lie down most of the day?
-------------------- Trying Posts: 1 | From NC | Registered: Jun 2018
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Welcome to the forum. I replied to your private message.
As for your questions here:
A positive WB is not usually a false positive, contrary to what many "official" sources (such as the CDC) may claim. If symptoms are not completely resolved with some treatment, then it is possible that the infection(s) is(are) not gone, and further treatment may be needed.
From what I understand, Lyme and co's are well known to cause all sorts of strange things, including Orthostatic Hypotension...
In addition, it might be helpful to have her adrenals and thyroid tested...that kind of exhaustion is how I feel without thyroid support...and low thyroid and/or low adrenal function can cause her symptoms and wouldn't necessarily respond to what she has tried because the underlying issue has not been addressed.
Lyme & co's can affect any part of the body, including the endocrine system (including thyroid/adrenals)â€¦
I hope this helps...take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4162 | From WA | Registered: Feb 2011
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If she is properly treated for Lyme and for MCAS, then her POTS should improve.
sorry ... orthostatic hypertension is her issue ..
Could still be from MCAS and Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 94534 | From Texas | Registered: Feb 2001
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There are actually a lot of other things that your daughter can try to help with those symptoms.
Laying down all day every day will make her symptoms worse. (I'm sorry, I know how hard it is to hear this.)
Most exercises will make your daughters symptoms worse so don't encourage those. The only exercises truly safe for her right now are swimming & riding the recumbent bike. She needs to do this at least every other day, for as long as tolerated. Increase time & effort as tolerated.
These 2 exercises are the only ones that are proven to safely build muscle tone while retraining/balancing/strengthening the nervous system.
If those exercises aren't helping enough to relieve your daughters symptoms, talk with your doctor.
There are several medications (besides midodrine) that have been found helpful. Most people try a couple before they find the one that truly works the best.
IV fluids can also be very helpful.
Also, make a list of all your daughters medications & supplements. Then ask your pharmacist to carefully check them all to make sure that you don't have any overlooked interactions. Interactions can cause all kinds of horrible symptoms to it's always worth while to check.