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Posted 11/5/2022 3:03 AM (GMT 0)
My llmd says I can still have babs because of my symptoms. My head feels stuffy like it's filling up with air or pressure and it doesn't hurt like a headache all the time. Also petechiae and pain in ribs and chest is babs. I have petechiae but I was told from other ppl that bart is chest and rib pain ? I read this on a symptoms chart for all co infections so this must be correct. I just didn't think babs could cause sharp pain in chest. Air hunger was worse when starting up herbs like CSA ? Bart wouldnt likely cause air hunger would it? If I was tested for only b. Microti and not b. Duncani can I still have babs? My b. Microti test was neg through igenex. Is babs FISH test more accurate? Had anyone had negative babs test but still had symptoms and treated by llmd?
Posted 11/5/2022 3:18 AM (GMT 0)
The pressure in my head, but not painful headaches, was my blood pressure and electrolytes being screwed up because of adrenal problems. Have you tried hyrdocortisone?
Posted 11/6/2022 3:13 PM (GMT 0)

Quin said...
The pressure in my head, but not painful headaches, was my blood pressure and electrolytes being screwed up because of adrenal problems. Have you tried hyrdocortisone?

I have not tried hydrocortisone. Don't I need to have testing done to be put on it? If so what testing? I also don't believe I've ever had a 17 hyrdroxyprogesterone test done which I think I'll ask for.
Posted 11/6/2022 5:35 PM (GMT 0)
The low B12 and increased homocysteine were enough to convince my doctor to prescribe hydrocortisone, but only because I specifically asked. The B12/homocysteine effect occurs because of adrenal stress resulting in increased epinephrine production which uses up B12 and vitamin C. My sodium and potassium levels were also occasionally out of range, but only once or twice out of a dozen blood draws.

Most of the numbers were 'borderline' and it's very much a judgement call at that point as to whether hydrocortisone is warranted. Some doctors may be more hesitant than others.

I continued to have adrenal problems so went for the 17-hydroxyprogesterone test, which came up out of range. This indicates a genetic defect in cortisol synthesis. Note that you must not take hydrocortisone before this test as it will affect the result.
Posted 11/7/2022 8:41 PM (GMT 0)
Bart gives me air hunger. I get a lot of funky pressure in my head… there is csf pressure along with blood pressure, but no one has exactly explained all the weird pressure in my head. What’s weird is I need tons of midodrine for blood pressure but even though my bp numbers go up with florineff the horribly feeling I get hat life is draining out of my head isn’t helped by florineff the way it is by midodrine. Instead florineff puts me in this weird state where I get sick on too much midodrine while still having that awful feeling I get when I don’t have enough.

They sent me to be evaluated for chiari/cci by Dr B in NY. Apparently all of what I describe is typical for his patients. Sadly it does not appear to have been what causing my issues.
Posted 11/7/2022 8:57 PM (GMT 0)
Never knew bart can cause air hunger. I also get our of breath just from bending down then standing up (pots) maybe but also walking up the stairs. I think I'm positive I must have vit b deficiency and vit d deficiency and idk what else.
Posted 11/7/2022 10:59 PM (GMT 0)
Bartonella destroys the red blood cells, causing anemia and shortness of breath. Also causes excess bilirubin.

The adrenal insufficiency causes me to pee a lot and lose salt. Then sometimes the next day, my blood pressure rebounds and I feel the pressure in my head. Florinef can stop the salt loss, but if you get this rebound in blood pressure then you probably want to skip the florinef that day.
Posted 11/8/2022 2:13 AM (GMT 0)

Quin said...
Bartonella destroys the red blood cells, causing anemia and shortness of breath. Also causes excess bilirubin.

The adrenal insufficiency causes me to pee a lot and lose salt. Then sometimes the next day, my blood pressure rebounds and I feel the pressure in my head. Florinef can stop the salt loss, but if you get this rebound in blood pressure then you probably want to skip the florinef that day.

This makes sooo much sense. Aha moment. So adrenal insufficiency makes us urinate lots and lose salt or (sodium)? Huh, I've been urinating like crazy plus losing salt because of this I guess. I guess taking a little sodium would help and I also take potassium to balance the salt. Can this be why salt takes my migraines away ? I have a little salt sprinkled on my food, and then my migraine subsides greatly as if I was low on salt or sodium ?I would urinate like 4-6 times per hour! I found out if you wake up multiple times during the night, that means you have a potassium deficiency as well. My potassium blood levels were that low they were right there bt taking some fixed all the urinating at night issues.
Posted 11/9/2022 10:36 PM (GMT 0)
The sodium loss caused me headaches, yes. Then later sometimes I would get a rebound in blood pressure that felt like air pressure in my ears. Occasionally blood tests showed a potassium deficiency, but sodium loss was the main issue.

The salt loss usually happened when I was herxing and detoxing, but the vitamin D problem caused it too.

Having to pee 4 to 6 times per hour is pretty severe. I have a genetic adrenal disorder on top of lyme and bart, plus mild hyperglycemia and I was still not urinating quite that much. Maybe something is putting pressure on your bladder? You should probably get tested for diabetes, vitamin D to 1,25(OH)2D ratio, and 17-OHP. A cortrosyn test might be advisable too, if your doctor knows how to do it. (The last time I had it done, the medical staff screwed it up, tested the cortisol but forgot to do the 17-OHP. I ended up having the 17-OHP done without the cortrosyn, and it came up positive anyway, but that's less reliable.)
Posted 11/10/2022 3:54 PM (GMT 0)
be aware that it is well documented in the scientific literature that toxoplasma gondii and lyme antibodies cross react
Posted 11/10/2022 7:48 PM (GMT 0)
That would be surprising since toxoplasma gondii is an apicomplexan parasite more closely related to babesia.
Posted 11/10/2022 8:06 PM (GMT 0)

Quin said...
That would be surprising since toxoplasma gondii is an apicomplexan parasite more closely related to babesia.

yep, but antibodies don't know or care how they are related - they just react to proteins/antigens.

apicomplexans are super complex little beasts with many times more coding DNA than even Borrelia (which are huge in terms of its genome by bacteria standards) -

so more dna = more proteins = more chance of making some similar to something else= more chance of cross reactivity

its in the literature
Posted 11/10/2022 8:45 PM (GMT 0)

Garzie said...
be aware that it is well documented in the scientific literature that toxoplasma gondii and lyme antibodies cross react

Garzie- could you clarify your comment please for those who read in the future. Is my interpretation wrong when it seems you are saying anyone with a positive Lyme result should ignore any positive toxo result and therefore ignore the infection altogether?
Posted 11/10/2022 9:31 PM (GMT 0)
Sure Breezy
i would say - not necessarily ignore - but be aware that the toxo result may well be a false positive due to cross reacting antibodies.

therefore in a patient who is pretty sure they have lyme (eg bulls eye rash and symptoms - or several bands on a western blot, or positive elispot), you cannot be sure you have toxo based on serology alone.
Posted 11/11/2022 10:29 PM (GMT 0)
The symptoms of Lyme disease and toxoplasmosis overlap, but a distinguishing feature is that I herxed significantly from loratadine/desloratadine, which would not be expected to affect toxoplasma gondii. Also toxoplasma is susceptible to anti-malarials (eg atovaquone) which have no effect on borrelia.
Posted 12/16/2022 6:00 AM (GMT 0)

Garzie said...
be aware that it is well documented in the scientific literature that toxoplasma gondii and lyme antibodies cross react

Do you have a link or article about this? It's really interesting to me actually. Some ppl have toxoplasmosis symptoms, some with negative test who believe they have Lyme instead, although idk how weak the toxoplasmosis tests are if they're anything like Lyme testing?
Posted 12/16/2022 9:45 AM (GMT 0)
“ Had anyone had negative babs test but still had symptoms and treated by llmd?“

My llmd doesn’t bother with Babesia testing.
He assumes that you have it and treats it.
He treats Babesia and Bartonella with all patients who have Lyme disease.
Posted 12/16/2022 8:49 PM (GMT 0)

Girlie said...
“ Had anyone had negative babs test but still had symptoms and treated by llmd?“

My llmd doesn’t bother with Babesia testing.
He assumes that you have it and treats it.
He treats Babesia and Bartonella with all patients who have Lyme disease.

That's the smart way to do it I'd say and I agree strongly. My last llmd also said they'd treat for babesia later down the road once they've started treating bart and lyme, especially if someone's been in treatment for very long for bart and lyme with little or no improvement.
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