posted
So yesterday I got some serious answers as to why I am feeling like absolute crap lately.
First I got my CD57 results back and Im a 47! for a 22 year old kid who never gets sick thats pretty alarming. In order to address that my LLMD wants me to start taking this stuff called Transfer Factor LymPlus thats supposed to be immune support
Second I got my adrenal function test back and this explains a lot. My cortisol levels are through the roof at night and non existent in the morning. My serotonin, GABA, dopamine, and Epinephrine are all really low as well. So my LLMD wants me to try this stuff called Calm CP, and TravaCor and see if that helps.
Third, I am always complaining about having no energy ever so she wants me on ATP Fuel..
Fourth she is adding in cholestyramine as a form of detox and nystatin for good measure.
So all of that will be added into my Minocycline, Bactrim, and Tindimax daily routine. Now to find enough time in the day would be nice.
She says there is overwhelming evidence that I have bartonella infection and I already know I cant take cipro anymore and I stopped taking rifampin so I have to pray that the bactrim will hold up.
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Gee, nice to hear something besides complaints about a doctor here now and then.
Be sure to check the side effects/interactions/timing of cholestyramine, as it will soak up and remove other things you are taking. Or maybe you already know this.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
She said at least 3 hours away from everything. I just take it first thing in the morning
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Glad to hear. It seems like you are getting excellent care.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Awesome, TBrown! Sounds like you are in good hands.
Haha-I agree totally about enough hours in the day for all our meds! Haha.
Poppy-i see where you're coming from. So let me give kudos to my doc...my LL is saving my life. Tenacious, curious and driven to help TBD patients in Canada.
Some of us are so lucky to get in with awesome LL's. God bless them.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Sounds like you may be seeing my llmd doc.Ive been seeing her for years and she is awesome. Go Pats,celts and sox.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Tbrown-can you empty your pm mailbox? I was asking you to pm me her name for my list for seeking a doc. Thanks
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just know that you have to take laxatives with cholestyramine. It will bind you up bad!!
Here is a short quote from Burrascano:
"Cholestyramine should be taken two to four times daily, and Welchol is prescribed at three pills twice daily. While the latter is obviously much simpler to use, it is less effective than cholestyramine. The main side effects are bloating and constipation, best handled with increased fluid intake and gentle laxatives." (page 13)
Read everything he says about it on page 13 for an understanding of how long it generally takes to work, etc.
T.Brown, I am very happy for you! Transfer Factor worked great for me. And, all of the other things sound really good also.
Keep us posted on how you are doing.
The doc is the key!
Posts: 9931 | From Maryland | Registered: Dec 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
The questran worked for me without laxative but i take mag an c
Even with mag and c welcho messed me up for weeks-almost put me in er
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is great. Be sure to let the people covering Seeking a doctor, know who she/he is so others can find out. They send the names out privately.
I hope this helps you. I also hope you are over bartonella.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I can only take the chlorestamine once a day since it would be impossible to take 3 hours away from anything twice in one day there just isn't enough time haha I need to figure out a routine. I slowly started introducing half of the suppliments today
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
Id be happy to share who she is through personal message if anyone in the New England area is seeking an LLMD
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
True about the CSM .. due be aware of the side effects. My body said NO.
So glad you have found a Dr that fits what you seem to need!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
The questran worked for me without laxative but i take mag an c
Even with mag and c welcho messed me up for weeks-almost put me in er
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Maybe you can take the cholestyramine 2 hours apart from other things in order to take it more often? I thought that was enough time, but you should check with your doc, as you don't want it to absorb your meds or supplements.
In terms of the rifampin, I don't know what your experience with it was, but what has worked for me and some others, is to have your doctor rx it in small doses, i.e., 150 mg, or even lower, if it goes lower, and work up very, very slowly, so you can tolerate it.
It is a tough one to be sure. But it has helped a lot of people. It is something to possibly discuss with your doctor.
I'd like the name, too, but will have to make room in my PM box tomorrow night or so first.
Posts: 3771 | From around | Registered: Mar 2008
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posted
As far as the rifampin goes I was on it for a while but after 2 months my liver enzymes were elevated so I switched to bactrim but she said if bactrim didn't work or I developed a reaction then I could go back on it just with heavy liver support suppliments.
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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