posted
Sorry for so many threads the past couple of days, I promise this'll be the last for a while. I'm all over the place. My LLMD doesn't really seem to know what is affecting me more, babs or bart...it also seems I have parasites (full moons really intense). AS well as borrelia and ehrlichia. Fun stuff. I'm currently on a lypsomal Artemesia-Enula mixture, with enzymes and doxy. Yesterday, I believe I passed a parasite in my toilet. I am herxing as I move up my doses, but I can tolerate it and am confident this is a good mixture for me.
My LLMD says that the full moon points towards parasites, but also said that bartonella can mimic a parasite and be causing that. Based on my description, my llmd can't really tell which is affecting me more but knows they are both a problem for me.
For so long, I feel good half the day then bad the other half. For a long time I was bad during the day and feel good at night, but it has switched before.
I'll be feeling good for a period of time, then a "fog" seems to pass over my brain. It makes me feel depressed, anxious, and is just an intense mood swing in general. Sometimes when this happens I get asthma.
I have not treated bartonella specifically yet, and have only just begun addressing babesia/parasites. Rifampin/doxy is go to for bart/erlichia, and I have a perscription of rifampin here ready to go, but I would have to stop my AE mixture, and maybe just switch to Artemesia capsules and add malarone.
I'm so confused, so is my LLMD.
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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posted
i guess it just feels like I should get the Rifampin out of the way to potentially eradicate ehrlichia and bartonella at once, but I don't like how I have to stop what I'm doing and getting results from.
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You - nor anyone here - cannot figure this out because you / we simply do not have all the information or training.
This part is not up to you. Or us.
Your doctor should have a handle on the Rx, timing, doses, etc.
If your LLMD is confused, I'd question whether they are a real ILADS educated LLMD or not.
Oh, not that even the best of the best can't be baffled on a certain level and may share that it can be hard with anyone to know just where to begin because each person, each case is really unique.
Still, an experienced ILADS educated LLMD should know where to begin, to see what path is likely the best place to being for you. And they you both take it one step at a time.
About which symptom is what, that is not so clear. And it may not matter so much that we pin down which infection is causing this, at time moment.
About which way to move (or the options), that is something a good LLMD should be clear about. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Either way, they will all have to be treated in the end so does it matter?
As far as being "the riskiest" according to the CDC, erlichia is the one, so treating erlichia first may be the safer bet.
Although many of us are chronic erlichs.
It rhymed...I had to do it... Sorry.
And I use the CDC reference reluctantly, in case anyone was wondering.
But I do feel that acute cases of rmsf erlichia and anaplasma need to be addressed and treated ASAP.
So the safest bet...
Well you guys get where I'm going here.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
why would you need to stop with the artemisia and enula if you go on rifampin?
Posts: 387 | From The Netherlands | Registered: Nov 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say "Sometimes when this happens I get asthma. (end quote)
Just to be sure you have this detail - be sure to avoid anything with acetaminophen in it. Acetaminophen can contribute terribly to asthma.
. . . Even a single dose of acetaminophen can reduce the body’s levels of glutathione, a peptide that helps repair oxidative damage that can drive inflammation in the airways, researchers have found. . . .
Tiny overdoses of Tylenol can add up to deadly damage
By Rachel Rettner 11-22-11
Taking even slightly too much Tylenol over a period of several days can lead to an overdose with deadly consequences, a new study says. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Yes good catch S13.
Why?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I mentioned the symptoms and shifts you describe are all just normal for lyme "complex" & TBD, etc.
Liver support, magnesium and adrenal support can help, however.
posted
If you put the alcohol based herbal tinctures in a little warm water the alcohol evaporates off.
If your liver enzymes are ok, it is usually ok to continue with alcoholic tinctures even when taking rifampin or flagyl. Of course, common sense says to try a lower dose of the tincture and see how you feel.
As to what order to treat infections, many LLMD's treat lyme plus at least one coinfection at the same time. They generally do try to treat ehrlichia, anaplasma, RMSF and rickettsia first if that is a known infection.
But it is all trial and error for every patient. Many patients need a year or more to treat bartonella and the same for babesia.
A good LLMD will begin with an overall plan, but adjust that at each appointment depending on how you respond to meds, changing symptoms and new test results.
There are no studies that say the infections need to be treated in a certain order.
Many people do better treating all their known infections at the same time. But it can be difficult to find a combo that treats everything.
If you do in fact have G.I. parasites then a short course of a parasite med might be a good place to start. Herbs can be helpful, but results can be very slow.
Your doc will guide you, but you should feel comfortable making treatment suggestions and the final decisions are yours.
If you can pinpoint your worst symptoms to a specific infection then that is the infection you should target first.
I do feel that if you have babesia it is very important that treatment continue uninterrupted until that infection is gone. Some of the other infections may multiply quicker, but I feel they are less likely to become drug resistant than babesia which is why that infection needs to be treated continuously.
Bea Seibert
Note -- I am a little concerned about the art formula you are on. I do think babesia can become resistant to that herb in some cases so I would either stop that fairly soon or as you indicated move on to malarone plus the art or another babs med.
I feel that at least 2 babs meds need to be taken at all times when treating babs -- doxy does count and so does zith and even rifampin when treating babesia.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
If your LLMD is as confused as you are then I would save my money and look for a more qualified and confident LLMD.
quote:Originally posted by lax mom: If your LLMD is as confused as you are then I would save my money and look for a more qualified and confident LLMD.
I have no money, which is the problem.
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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quote:Originally posted by seibertneurolyme: If you put the alcohol based herbal tinctures in a little warm water the alcohol evaporates off.
If your liver enzymes are ok, it is usually ok to continue with alcoholic tinctures even when taking rifampin or flagyl. Of course, common sense says to try a lower dose of the tincture and see how you feel.
As to what order to treat infections, many LLMD's treat lyme plus at least one coinfection at the same time. They generally do try to treat ehrlichia, anaplasma, RMSF and rickettsia first if that is a known infection.
But it is all trial and error for every patient. Many patients need a year or more to treat bartonella and the same for babesia.
A good LLMD will begin with an overall plan, but adjust that at each appointment depending on how you respond to meds, changing symptoms and new test results.
There are no studies that say the infections need to be treated in a certain order.
Many people do better treating all their known infections at the same time. But it can be difficult to find a combo that treats everything.
If you do in fact have G.I. parasites then a short course of a parasite med might be a good place to start. Herbs can be helpful, but results can be very slow.
Your doc will guide you, but you should feel comfortable making treatment suggestions and the final decisions are yours.
If you can pinpoint your worst symptoms to a specific infection then that is the infection you should target first.
I do feel that if you have babesia it is very important that treatment continue uninterrupted until that infection is gone. Some of the other infections may multiply quicker, but I feel they are less likely to become drug resistant than babesia which is why that infection needs to be treated continuously.
Bea Seibert
Note -- I am a little concerned about the art formula you are on. I do think babesia can become resistant to that herb in some cases so I would either stop that fairly soon or as you indicated move on to malarone plus the art or another babs med.
I feel that at least 2 babs meds need to be taken at all times when treating babs -- doxy does count and so does zith and even rifampin when treating babesia.
The pharmacist said never under any circumstance mix any alcohol with rifampin. I've heard you can evaporate most of the alcohol, but not all of it, and it's still not safe to use.
-------------------- Bart/Babs/Lyme Posts: 64 | From Upstate New York | Registered: Jan 2014
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posted
In people with multiple infections it can be very difficult to pinpoint a specific symptom to a specific infection. It takes time and often only becomes apparent with different med trials that target specific infections.
If you have only had a couple of appointments then it is not at all unusual for the doc to have no idea which infection is causing which symptom.
I think it sounds like your doc has a fairly reasonable approach and a pretty realistic picture of your various symptoms.
At this point in treatment really all you can do is jump into treatment.
I don't think anyone with a chronic tickborne infection can say that every treatment decision they made went exactly as planned.
One doc told hubby early on never to trust a doc who uses the phrases always and never. Medicine is not an exact science.
Trust your intuition. The patient generally knows what is working or not working.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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