LymeNet Flash: On maintenance abx but just added Samento--are symptoms relapse or herx?

This is topic On maintenance abx but just added Samento--are symptoms relapse or herx? in forum Medical Questions at LymeNet Flash.

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Posted by Julie-MA (Member # 5110) on :

I am finally down to Biaxin and Plaquenil 2 x day, 1 day/week (per dr.'s orders) and have been doing that for only two weeks. I have tried to reduce several times before and have always relapsed.

I saw my LLMD almost two weeks ago and he agreed that my Lyme seemed much better but that I did have a significant yeast issue. He did add Samento for the first time for the Lyme, but he also added Diflucan, Nystatin, grapefruit seed and olive leaf for the yeast.

For the several days I have had intestinal pain and discomfort (gas, bloating, general discomfort), which I assume has to do with the yeast. More of a concern is that for the past two days I have had pretty noticeable (depsite my attempts at denial) heart palpitations throughout the day.

Last night my fingers and toes started to ache (the first symptom I ever had with Lyme, over three years ago). This morning, my hands aches and my left knee hurts and is making me limp.

I am in tears, distraught that my body once again can't handle the 1x week abx and that I am relapsing and will need to go back to daily meds.

What I am hoping, though, is that perhaps this is a herx from the Samento? Or yeast die off? But even if it is, does having a herx at what is supposed to be the tail end of treatment mean that there are still too many keets in my body?

I would appreciate any help you could give me.

Julie

Posted by dontlikeliver (Member # 4749) on :

Hi Julie,

I don't know. But, is grapefruit seed extract from grapefruit (assume it is). Find out if it is compatible with Biaxin. I don't know where but I THINK I may have read somewhere that grapefruit is to be avoided with Biaxin.

I would try to find it for you, but I am so ill myself right now, I don't hae the attention span.

DLL

Posted by lymie tony z (Member # 5130) on :

It seems you are taking too many things for the yeast...however I'm not a doctor.
For a lot of us we have seen a sort of digression in symptom order from last to first when we have gotten better.
If these symptoms were some of your first this is a good thing...how good is yet to be seen in you.
Hopefully you will not need to go back to daily meds but I suspect you may have to.
Discuss with your md the herxing affect of the samento and the grapefruit seed extract.
I got a mild herx from the extract early on in my disease but not enough killoff to keep me off of IVabx or IM or Oral.
Lately I've been using ketek durring my cyclical monthly flareups skipping a month in between so as to give the chetes that may have developed immunity to the ketek from the previous month to have offspring that were not exposed to the ketek so I may have a more efficacious killoff ratio in the next generation.
I have experienced some good results this way in that my neurapathy(one of my first symptoms) and the heavy leg symptom and better sleep have gotten better.
Is this method a cure or even the right way to go??? Jury still out...but for me I feel better longer than constant daily/monthly abx treatments....The samento could be giving you a herxlike effect which could also be a good thing...
I would check the grapfruit contraindication for biaxin just to be on the safe side........
...........................good luck zman

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[This message has been edited by lymie tony z (edited 29 March 2005).]

Posted by Lymelighter (Member # 5310) on :

Julie, it's discouraging, I know, but par for the course. I've heard others complain of pain when they go off meds. Ask you LLMD for his opinion. My LLMD said it's hard to differentiate bb symptoms from yeast die-off or abx herx. How do you feel when you're not taking anything (no herbs etc)? I wouldn't let a small setback throw you into a tailspin.

Look on the bright side, could be much worse. If you can function and are not in a drunken Lyme-daze, your glass is 1/2 full.

Once you get the yeast in check, I'm sure a bucket of fried clams & onion rings from Woodman's and/or The Clam Box will put a smile on your once-sullen face.

Posted by brodius (Member # 6835) on :

Hi Julie - I have been taking Samento for three weeks now - and throughout my entire illness I have never been in so much pain - I am miserable - I just pulled a muscle in my back last night - my fingers and toes ache - I creak and crack and I seem to have muscle spasms everywhere - I went off the Samento for two days and the pain reduced significantly.

I am also taking Diflucan and through trial and error - I know it is the Samento that is doing it - HOWEVER - I am feeling better in a lot of ways - So, I am continuing with it despite the pain.

Posted by Julie-MA (Member # 5110) on :

DLL, ZMan and Lymelighter,

Thank you for your replies. I had not thought about the Biaxin and grapefruit connection but just looked it up and it sounds concerning.

Everything I read refers to grapefruit juice, but I too wonder if the extract could have the same impact. I know my LLMD often works with Biaxin, so I imagine something like that wouldn't slip his mind, and perhaps the fact that I am on Biaxin only once a week impacts his decision, but it does make me wonder.

It is interesting about Zman's comment about the first symptom reappearing being a good thing; I had asked my LLMD that one time, wondering the same thing, and he said it is a good sign. I'll grasp at anything positive!

I guess I know I probably need to check in with my LLMD...but I just wnat to stick my neck in the sand.

Lymelighter, I often drive through Ipswich (though not quite as far as Essex) and noticed the other day that The Clam Box is open for the season!

DLL, I am so sorry for all that you are going through. I read your other posts and am concerned about you. Thank you for taking the time to post.

With thanks,
Julie

Posted by dontlikeliver (Member # 4749) on :

Thanks Julie,

Well if it is true that one's original symptom picture returning being a good sign, then perhaps what I'm going through is.

Fingers crossed, I actually feel like I'm a LITTLE bit better right now, so perhaps it's starting to go.

DLL

Posted by Julie-MA (Member # 5110) on :

Brodius,

You and i must have posted at the same time! I was so relieved--though sorry for you!!--to see that you feel worse on the Samento. Maybe that is at the source of it for me too and maybe it is all for the greater good.
Thanks.

DLL,

I hope you do continue to feel better. Incremental steps must seem a little frustrating, I bet, but I'll hope the forward momentum continues.

Posted by lymeinhell (Member # 4622) on :

Heart palps were always my most 'fun' herx symptom. And they hit me hard from the very first dose of TOA Free Cat's Claw. I assume you started with a small dose? It's powerful stuff.

Of course, please investigate the cross reaction of grapefruit and Biaxin. I'm on a beta blocker and can't tolerate it either.

And hey, down to once a week is a very good thing. That's how my LLMD got me off abx - very very slowly cut down dosage.

So now you deal with yeast die-off and getting used to the Samento, and I think you may have left the worst behind!!

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Julie G.
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lymeinhell

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