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I'm planning to see a naturalist that LLMD and several others have urged me to see to see if she can give me some more direction.

She does muscle testing and does some kind of testing on the hair, so she might be able to point out other deficiencies that I may have.

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My son and I went to a ND... I feel she is putting us on a nice steady road. She only does the muscle testing...

I am also cold all the time... hands and feet. She did the muscle testing on me and said I have to address thyroid issues. Makes sense to me. I have been saying that for years but I always test OK for thyroid. Anyway, she put me on Thytrophin by Standard process. I feel pretty good on it. Not so cold and it's only been a couple days.

Not that I am saying you have a thyroid issue but many with lyme do. If you haven't gone to the ND yet - go! I wish we went sooner.

Hope you feel better soon!
 

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Posted by Starfall (Member # 26795) on :
 
I haven't gone to the ND yet; money issues, as usual.

I do need to call her. I'm just so afraid this is some missed heart issue, even though I saw a cardiologist--but that was 2 years ago, anything could have changed in that time.

When I feel this bad, I think I'm dying; that scares me more than anything.
 

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Posted by momlyme (Member # 27775) on :
 
If you are really worried about the heart and you have insurance... have the heart checked out by a cardiologist.

My DH went to the ER last Friday and last Easter with heart palpitations... he keeps thinking it must be his heart. If I had a LLMD around here that could treat adults... I'd send my husband -- and a few other people!

Unfortunately, the only LLMD's around here don't take insurance and we are treating the sickest family member first.

My son has chest wall pain all the time - he's 11. It could be an infection, ya think? I believe my husband, me and my dog all have the same infection... my son is just sicker than we are.

What are you currently doing for treatment?
 

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Posted by Starfall (Member # 26795) on :
 
I'm currently taking Doxy and Rifampin, and my LLMD started me on Artemisinin because he suspects babesia--I'm allergic to the abx they use for that.
 

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Posted by Starfall (Member # 26795) on :
 
Doctor appointment at 11am. We'll see what she says--yeah, right. I can just imagine.
 

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Posted by cactus (Member # 7347) on :
 
Do you have POTS?

You were standing - making dinner - which is what makes me ask.

Check out potsplace.com for information on it, it is a form of dysautonomia, and is common in people with Lyme and co.

I have it, and episodes can make me feel just as you describe.

The OTC helpers are staying very, very hydrated and consuming extra (good quality) salt - to keep blood volumes higher so our heart doesn't have to work as hard.

It might be worth checking.
 

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Posted by momlyme (Member # 27775) on :
 
Artemisinin can cause a strong herx. My son was falling down all over the place... I had to take him off of it. It was too much to handle with everything else he is doing right now. He even fell off a chair!

He's on Detoxosode now. It's a little milder but still - sick, sick, sick. But we've got to kick this, so he's pushing through. He's only on a 1/2 a capful a day...

I feel for you. It's not easy.

I am taking an artemesia, black walnut & clove regimen and it is kicking me too. It's the second time I did it... first time was way worse.

I have in my notes from a Lyme Autism Connection Conference- Dr. H - Babesia symptoms:
headaches, night sweats, neuronal death, cardiomyopathy,breathlessness

Hope this helps!
 

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Posted by iamgreek (Member # 29517) on :
 
I too suffer from a fast heart rat e, chest compression, fainting spells and shortnes of breath. For several months know I have been focusing on the lymes and not my co infections. First off what will help off the bat is magnesium and small amounts of potassium .

I switched doctors recently and got taken off my reg antx.
I am now on Mepron and azithromycin. It has helped a bit and eases the fainting spell situation. On day 3 now and feeling a bit better.

Just know (though seeing a cardiologist may put your mind at ease) that your body is fighting and your adranal glands are not working as they should be.
I want you to know that these symptoms we share are the scariest symptoms of them all, It's like all the life is out of your body.....so scary !!!

But also know your NOT ALONE. It may not seem it, but this too shall pass !
Love and speedy recovery.
Steven
 

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Posted by lou (Member # 81) on :
 
What is your blood pressure situation?
 

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Posted by Starfall (Member # 26795) on :
 
My blood pressure has always been on the low side, recently it's been around 90/50. Sometimes they even have a hard time measuring it because they say it's weak. My LLMD wasn't overly concerned about it.

I have wondered about POTS, but I thought you only got sx from that upon standing. I do get light-headed and sometimes black out slightly when I get up, but not always, and I was up and about when this happened, which is unusual for me.

I just hope this doc takes me seriously and doesn't just say I'm stressed this time, like she had been. I don't usually go see her for anyhting anymore, just stick it out till I see my LLMD,

but he's away for this month, and I won't see him again till the end of January.
 

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Posted by iamgreek (Member # 29517) on :
 
my blood pressure spikes from time to time. Another thing that helps me Starfall, I don't know why but it does, is a warm shower....sauna, some steam as well.
Remember it sounds like you have the B co infections... Ask your doc to start focusing on that, if he doesn't feel he should...... get a new doc.
 

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Posted by cactus (Member # 7347) on :
 
My POTS symptoms always varied - sometimes I would have them, sometimes not. And sometimes, even while sitting.

So I think it can vary from day to day, hour to hour.

Have you checked your heart rate after lying down for 5 minutes? Not even talking? ...Then stand up, straight on both legs for 5 minutes, and check it again. If it raises significantly - that would likely signal POTS.

After reading the above posts, I wanted to say also that I could not handle artemisinin. Too much for me. (I have genetic detox issues)

But, overall, babs treatment significantly improved most of the symptoms you described. So you could be herxing.

Looking back, I wish I'd known about POTS during babs treatment, because maybe some of what I attributed to herxing could have been alleviated by treating POTS. Maybe not. Hard to say - but I wonder.
 

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Posted by Starfall (Member # 26795) on :
 
Well, back from the doctor.

Totally off the radar, I'm running a low-grade fever---very rare for me, but would explain why I'm so ungodly cold feeling.

Also, my left ear (ALWAYS the left side) is really full of fluid.

She had me turn my head and do sit ups to see if I got dizzy, which I did. She gave me a script for Meclyzine--I'll wait to fill that, since it's just Dramamine, and I have some of that.

She was not happy that I'm still being treated for Lyme; I gave up on trying to talk to her about it. She just doesn't want to be educated.
 

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Posted by cactus (Member # 7347) on :
 
Thanks for the update. Hoping you feel better soon!
 

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Posted by nefferdun (Member # 20157) on :
 
I have similar symptoms with babesia and you have it but are not treating it, so that is probably your problem. Can't offer any advice other than, get treatment.
 

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Posted by Starfall (Member # 26795) on :
 
Well, we want to treat babesia, but I'm allergic to the abx used to treat it. That's why I'm doing artemisinin.
 

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Posted by Shahbah (Member # 28735) on :
 
so maybe you're just herxing from the artemisinin? when did you start it?
 

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Posted by Starfall (Member # 26795) on :
 
Started about a week and a half ago.

Funny thing is, now I'm fully down with whatever this is--turned into a fever, sore throat, stuffy nose thing--the air hunger, weakness, all that stuff is gone.

That always amazes me--I feel like I'm on my deathbed before I come down with something, and then when I finally come down with it, I may feel crappy, but I feel tons better than before I'm sick.
 

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Posted by momlyme (Member # 27775) on :
 
Sounds like a herx to me too. Artemesinin through me though a loop... my son was way worse. We only did 5 days the first time. We were both pretty sick... maybe the key is keeping going.

I am on day 3 today and I had to force myself to down those pills. Congrats on making it to day 10. I need to work up to that. I am already dreading day 4 - tomorrow!

Are you still taking the Art?

What brand?

Sounds like a good one! Maybe you made it to the other side-- and kicked Babesia Butt!


 

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Posted by 'Kete-tracker (Member # 17189) on :
 
What you're describing with the air hunger, major weakness & then a cold feeling Really Sounds like a Jarsch-Herxheimer reaction. (Are U on any new abx?)
But I'm wondering if your thyroid is stable.
Have you Had some 'TSH', 'free T3' & 'free T4' blood tests done? BB 'ketes luv to mess around in the thyroid gland (in the neck, just below the "adam's apple")

Seeing the N.D., especially if she's Lyme literate, would seem to be a great idea.
And since your regular LLMD is on "vaca", this may be the time to get some 'extracurricular health support'.

Meclyzine ain't gonna cure anything! It'll just mask a symptom or 2. (Typical script from a non-believer M.D." ) You need to see just how, & why, your "hypothalamic-pituitary axis" is randomly malfunctioning.
Pituitary insufficiency is a major problem for some with chronic Lyme & you sound like you're a prime candidate.
 

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