posted
Hello, as I still have my doubts about having lyme I wish I had a herx, but not even sure what that would really involve.
Been on Ceftin for 4 months , started at low dose , now at 500mg 2x day... never have had any issues with Ceftin
Doxy and Bactrim made my head explode, blurred vision, migraines that were beyond the ability
to function, literally the moment I stopped those headache stopped, ( I belived this to be reaction to the meds and not herx )?
now on low dose rifampin 150mg once a day for a month
the only "side-effect" is for about a week was a headache ( behind eyes / pressure similar to doxy/bactrim experience but not as bad , no other side-effects/herx
because my dx of lyme I feel is alittle shakey, a herx would have helped my feel more confident
but maybe the dose is so low, my llmd is trying in avoid a full herx?
and i wish i knew if the doxy/ bactrim "effect" was a drug reaction or a herx
how the he** does one determine
sorry i know there isn't a clear answer, but your thoughts I am ALWAYS grateful for
Posts: 61 | From DE/PA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is nothing shaky about the diagnoses. Your history, symptoms and a positive ELISA with other positive coinfections leaves no room for doubt. Sorry.
The ELISA was positive, and this test rarely gives a false positive.
Western Blots done by regular labs usually do not report or test all the bands, including some which are Lyme-specific. So your negative Western Blot may be a false negative.
Furthermore, you have positive co-infection tests. And most LLMD's recognize that these co-infections seldom occur without Lyme...especially given your positive ELISA...
[end Razzle's post] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Back to the question. Not everyone will "herx" -- but it sure seems you did before with the Doxy and Bactrim (classic herx, really) . . . and even now that headache could be a herx.
But, why some may not herx? Your liver / kidneys might be working very well. Your nutrition &/or liver / kidneys support methods (are you doing any of that?) might be adequate.
MAGNESIUM is important to help manage that headache, though.
Still, not everyone will herx. A lower dose, working up to higher is a good plan, though, as IMO it is best to avoid a herx. They are not good for anyone.
There is no doubt that you have lyme and other tick borne infections. And, IMO, no doubt that the doxy / bactrim did cause a herx.
Still, moving on, attend to the headache with support methods and know that you could still get more of a herx in the future . . . so the support methods are still vital. -
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Keebler
Honored Contributor (25K+ posts)
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posted
Thanks. I guess I just can't shake lose that I still think it's classic ms ....
That's good I guess if they are working well. Besides the Lyme (I know this sounds funny) I am really healthy ...If that makes any sense ... Diet, yoga etc
Body seems to work. Brain is a mess.
I just read a lot of medical journals and I know some drs look for herx when doing the old ms vs Lyme dx
Posts: 61 | From DE/PA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- Lucy,
"Classic 'MS'" is lyme, so very often. However, by attending to lyme and other tick borne disease (TBD) or other chronic stealth infection can be the underlying cause of "MS" -- you can change the course.
Yeah, I know some doctors look for the herx as a sign, but it's not fool-proof. And you don't need another sign. You have positive ELISA and other markers, etc.
And some folks just never will herx, so that is never to be trusted as a "test" -- if it happens, it's an indication but not a requirement. But I do think you did. -
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Keebler
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Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities.
And how attending to underlying infections can CHANGE THE OUTCOME for the BETTER -
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posted
Just keep in mind.. there is no test for MS.
Sounds to me like you are herxing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I didn't have a herx for the first 4 months or so of treatment. We (my LL and I) probably would have doubted it was the right abx combo for me, except for some of my more PITA symptoms went away...
Not herxing...instead slow improvement, that is the goal.
Herxing is too hard on the body. And our minds.
We want to feel better, not worse
Headache behind the eyes for the first week of rifampin was a herx. Rifampin is a doozy. But a goody Hope this helps.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
That is true, Greta. I herxed right away, but it was not bad. My real herxing began several months later.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
IMO, ms is lyme. Don't sweat it if you don't herx. Some people don't and still get better over time.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
How long did you stay on the doxy? The dose of rifampin you are currently taking is probably not high enough to get rid of an anaplasma infection in my opinion.
It is good to go low and slow, but generally most LLMD's try to either increase the dose of a med or add a 2nd med about once per month. The goal is to keep challenging the pathogens by continually changing protocols.
I am somewhat surprised at the Bactrim causing as much of a reaction as the doxy. Not exactly sure what infections that med would be targeting -- generally used for babesia.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I was on doxy for only 2 weeks and got freaked out ( also the Dr was not a LLMD and I didnt want to continue with him )
Bactrim was crazy fast migraine within days.
I am taking zithromax 250mg x1day with the rifampin
I assume when I see Dr in a week he will bump the Rimampin.
most my stuff is neuro hope Rifampin hits that.
Does it generally then go to 300mg a day I assume?
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Catgirl
Frequent Contributor (5K+ posts)
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posted
Neuro stuff on me was babs, so doxy/rifampin won't hit that. Your LLMD will be able to help you with this.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Rifampin gave me KILLER headaches .. so keep an eye on that stuff!
It is good he began you at 150mg... this is one you REALLY need to ramp up.
Perhaps 300mg is where he is headed with this.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Lucy. I hear your uncertainty.
I treated for 18 months... herxes and all...and now after a year off and that symptoms come back, I still wonder which of the many dx's I have had in the past is where I should go to treat...
But the fact is. Lyme is actually a much more definitive dx than MS... there is in fact a test.
the scary thing, is if it is Lyme and you pursue MS, the steroids and immune modulators they would prescribe for MS could make you worse.
But treating Lyme sensibly (no more than 3 abx at a time) will not likely make MS any worse.
ABX are not to be taken lightly, take your probiotics, detox, do everything else you would normally do to stay healthy but the body can come back from ABX....
and when you get freaked out at how long you are treating, remind yourself that teenagers with acne take antibiotics often for years...for acne!!!
I guess what I'm suggesting is continue to give this a chance.
It was at the 6 month mark that I had some days that I felt like I used to... then I felt horrible again... but those good days showed me that I was on the right track. until then it was just on faith. (and then there were more and more good days...but it took a while)
If it doesn't work, Sadly the MS dx will still be there. I truly hope it starts to work for you.
I just wanted to add.. This is just my opinion. Especially the advice about amount of abx. As always talk everything over with your llmd.
[ 01-28-2014, 05:16 PM: Message edited by: Kudzuslipper ]
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