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» LymeNet Flash » Questions and Discussion » Medical Questions » Babs Blues Buddies (Page 2)

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Author Topic: Babs Blues Buddies
elle
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elle [/qb][/QUOTE]Is there a blood test to look for general absorption problems? And did Dr. B use Labcorp for his Mepron blood level tests? [/QB][/QUOTE]

I don't know if there is a general test - I have never heard of one.

The llmd that I went to used Labcorp. She followed closely to much of what Dr B was doing.

I am IgA deficeint and it causes great problems with absorption. I do better with liquids and much better with IM and IV.

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When I feel blue . . . . . . its time to take another breath

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trueblue
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quote:
Originally posted by elle:
I am IgA deficeint and it causes great problems with absorption. I do better with liquids and much better with IM and IV.

I am IgA and IgM deficient could the IgA problem be the reason I don't do well with oral ABX?

I hadn't seen this anywhere before. Is there somewhere to look for a reference about it?

I'd like to persuade my doc to switch to IM (or IV) as they've worked best for me in the past. I have absorbtion and detoxification problems big time with oral ABX and they are darned near impossible, for me, to take. I'm really tired of tanking and only being able to take microdoses of meds; it's not gaining me any ground.


Sorry to get off topic and thanks.

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more light, more love
more truth and more innovation

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cactus
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I've also seen references to the absorption issues, so if any of you find a link, I'd love to get more info on it, too.

Vanilla, hope your nose is all better. Berka's are good for keeping the sun off since we're all burning easily these days... maybe you can find a Lyme green one to go with the Mepron Yellow toes & Malarone Pink fingernails?

True, this thread's been all over the place, so I don't think anything's off topic!

I changed the subject line to Mepron Blues Buddies, since it's kinda morphed into another Mepron Buddies thread...

Hope that's cool w/ y'all...

Keep us posted on how you're all doing on the yellow paint (and malarone)...

BTW, I seem to have beaten the blues, and am having one heck of a good day - yippee! Started Plaquenil last night, so we'll see how long it lasts.

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�Did you ever stop to think, and forget to start again?� - A.A. Milne

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Vanilla
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That is good you are feeling sunnier. Are you feeling sunny Mepron yellow?

My nose is getting better but still not normal looking yet. I stiil need a berka. A berka jumpsuit type of deal really would help with tick bite reduction.

I think a lyme green berka might clash with the orange ticks I am finding on my deck.

Perhaps a lavender berka would look lovely as long as people do not think I am still celebrating Easter when they see it next to my Malarone toe nails. Lavender and yellow and orange all look stunning together.

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kelmo
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If anyone knows anything about absorbtion isssues, let me know. My daughter has been on zith and added mepron 8 wks ago. Her phosphate is now low.

Doc is checking thyroid and kidneys, but we think it may be a malabsorbtion issue. Anything help with that?

Do we kick up the digestive enzymes and probiotics?

Kelly

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wchun
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HI,

I'm on malorone. 2 pills 2x per day.
Slowly feeling a change back to normal.

I was on mepron 7 months w/ biaxin, plaq and art.

This is my first babs relapse.

Malorone would make an interesting makeup color. hummmmm

Love ya all,
Heatherkiss

Could not remeber my password. I'm on a laptop now.

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IT'S ME!
HEATHERKISS
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trueblue
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Hi Heather [hi]
I'm glad to hear the Malarone is helping.

It just doesn't seem like you without the pictures.


ok, I really had to laugh at from: lap [lol]

--------------------
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wchun
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C'mon

What's new?

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cactus
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Hey Heather - I'm still here [Smile]

Glad your pics are back, it's not you without happy smiley pics.

New here... ANXIETY. Yep, I thought I beat the blues, but now I'm extremely anxious. Could be the newest, ummm, "guidelines" though.

I'm on my 3rd day of Plaquenil, but just got up to full dose this morning. Nothing yet. Piece of cake except for the anxiety.

Has anyone else herxed on plaquenil? Heather, didn't you take it way back when?

Other than that, I'm just sitting here painting my bedroom Mepron yellow.

Vanilla - what's the latest on your orange ticks?

--------------------
�Did you ever stop to think, and forget to start again?� - A.A. Milne

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sixgoofykids
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I take Plaquenil, but didn't notice if it made me herx... at least it didn't right away, but it sure may have contributed to my regular herx.

When you get used to the taste of Mepron and don't mind it anymore, does that mean you've maybe taken it long enough? [Big Grin]

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Vanilla
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My Sacred Little Ticklets by Vanilla Swirl With Pecans
******************************************************

Not much other than I decided if you can not beat them join them.

I went to Berkas R Us and bought a neon orange Berka so I can blend in better. Maybe they will think I am one of them and not bite me but I doubt that.

I am having a hard time seeing out the tiny eye slits so I have been training the chocolate lab how to be a seeing eye dog to take me to my car and back.

I bought him a berka too but his is orange tie dye. I had to cut a big slit for his mouth because he is a bit obsessed and does not go anywhere without a tennis ball in his mouth at all times. I think it is a security blanket kind of deal he has going or he was weaned to young.

The green of his tennis ball makes him look like the giant pumpkin and the birds squirrels and ticks have been laughing at the two of us. It is a cruel world out there.

I also bought a hazmat suit to go over my berka and I am thinking about enlisting a dream team of shrinks to help me get over my deep fear of ticks.

I have been sleeping and showering in the hazmat suit and berka.

As anyone knows who has read my other posts I have no TV reception at the moment so there is no reason for me to be-able to see out the eye slits of my berka anyway.

Not seeing anything helps with my fear of ticks and bites. The berka is a bit itchy and I do trip over it often but besides that I think everyone should order one off my website.

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Vanilla
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Sorry to read about your anxiety cac. I hate when the anxiety kicks in but painting and with such a beautiful color hopefully will calm that anxiety right down otherwise pour some in the tub and get in and soak in it with candles.

When you get use to the taste of Mepron I think is a serious issue best not addressed by me but as I look into my crystal ball I see perhaps you were lucky enough to get one of those rare Mepron bottles with a magic Genie inside otherwise you know the stuff would tast yucky.

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cactus
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Me, me! I'll order a berka! Hey, do you have any Rynoskin berkas? I see a big market for those.

The taste of mepron isn't getting any yummier as I start to feel better, but I do find myself humming "Blue Skies" every time I get out the bottle... So here's my little ditty:

Mep-ron
Smiling at me
Nothing but Mep-ron
Do I see

Maybe if you sing it when you walk outside it will scare the ticks away.

Hope everyone's feeling better.

--------------------
�Did you ever stop to think, and forget to start again?� - A.A. Milne

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Vanilla
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Oh I forgot to tell you the most exciting part!

I have taught my cute little baby ticks to sing and we already have a booking set to appear on Letterman.

The group well be called Vanilla and the Ticklettes and we will do all old Dan Hicks and the Hot Licks songs.

Of course when we become famous you just know everyone who is anyone will be wearing a berka. I have the feeling my berka sales well be huge. I have already raised the prices in anticipation.

Of course we will be making them out of many different materials like porcupine and rhino so get your custom orders in early otherwise just like waiting to get in to see a LLMD for the first time you may have to wait months for your new berka.

I wonder if they will allow Paris to wear one in her new home away from home?

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beachcomber
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Mepron is making you all quite comical. I think I'll go swallow a teaspoon and see if it stimulates my funny bone so that I can find some humor in riding my bike around town in a berka. I suspect I will cause a fender bender.

I have houseguests for the holiday weekend. last night we had a lovely dinner on the patio. I joined everyone in a toast and had a 1/2 glass of wine. My sister said I was slurring my words almost instantly. Red wine and yellow road paint do not make a good cocktail! Ahhh, it was fun at the time. Am hurting a little this morning.

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sixgoofykids
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Well, from now on I'll be pouring all my Mepron into that bottle because of the genie! Thanks for the heads up!

I'm actually wondering if I have a reduced sense of taste or something ... it was so nasty in the beginning ... I no longer taste the Biaxin either ... and I have no appetite ... good thing skinny is in! [Wink]

Beachcomber, a half a glass of wine sounds wonderful ... is it worth the hangover???? Probably not! I am so loopy all the time anyway, I don't think I need alcohol, but everyone else does so that they understand me better.

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trueblue
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Hahahaha... Vanilla and the Ticklettes... singing
"How can I miss you when you don't go away?" (It seems a logical choice, heh.)


Cactus, please rethink the yellow walls. Yellow is an anxious color; you might want to go with something more soothing but complementary. (No reason not to be fashionable, certainly.) I find blue to be very soothing but my name might be prejudicing(sp?) me in that matter.


I thought I had the emotional down swing unswung only to get hit with things beyond me control. I have no choice than to deal with them. Time is short and I am shorter.

I feel a little better but the stress is doing me in and so is going most of it alone.

Ok, not as not blue as I'd hoped. [Roll Eyes]

--------------------
more light, more love
more truth and more innovation

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GenaD
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Hi everyone,

I was googling the effects of mepron and found you guys! I'm getting scared! I have Lyme, Babesia, and Bartonella and just started mepron 3 days ago. I'm only taking one tsp, and will be taking 2 tsp daily starting Sunday. So far I don't have any of the side effects you're talking about (depression, hallucinations). I have depression and irritability which come and go anyway, but I haven't noticed a direct link to mepron. I'm also on Zithromax. So, I guess my questions are, when did these side effects kick in for you? And do you think if I DON'T have them that the mepron isn't even working?? I don't know what's worse--these terrible side effects you're talking about or knowing that this expensive junk isn't even killing any bugs!!

I'm really glad I found you guys...

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"Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has."
--Margaret Mead

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sixgoofykids
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Gena, I'm glad you found us, too!

Actually, I don't hallucinate. [Big Grin] I get pretty disoriented, but I got that even before the Mepron ... I think it's from the babs ... and it's getting better.

I had the depression pre-Mepron, too. If you get it, take something for it ... it's just not worth dealing with.

You know what the greatest thing about having babs is? Since you can't drink alcohol with Lyme treatment ... well, with the babs you realize you don't need it anyway! I'm generally a little loopy from it ... and sometimes I have the dizziness to go along with it!

May as well look at the bright yellow side!

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GenaD
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Funny...I've never been a drinker (never been drunk in my life), and it's because alcohol always bothered me anyway (I think I've had Lyme since I was a kid. I just turned 35, and only recently got diagnosed--but some of my symptoms have been around FOREVER.) Also, I've always been a little loopy and didn't need any alcohol [Smile] Probably the Lyme again!! I just really hope the mepron doesn't make the depression and anxiety worse...

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--Margaret Mead

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sixgoofykids
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Alcohol's always bothered me, too. Even a small amount can make me seem totally drunk!

Don't worry about what effects the medication will have ... you will know soon enough and can deal with it then. [Smile]

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GenaD
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You're right...If it aint broke don't fix it, right? [Smile] Having none of these side effects is a GOOD thing..but I OBSESS over things now (thank you, Lyme!) so I'm trying not to obsess on the question of if the mepron is even working...So glad other people understand! I've never been a depressed or anxious person until the last couple of years. I have a background in counseling, so I try to "stay above" of the feelings...monitor them as they're coming in and tell myself, "This is just the bugs, this isn't YOU"...but sometimes it's rough, as I'm sure you know!

--------------------
"Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has."
--Margaret Mead

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Vanilla
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Gena was your bottle of sunflower power sealed when you got it. It seems from what people have posted here that a lot of Mepron is watered down or tampered with before you get it due to the high cost.

Sometimes you can get your Mepron for free from Bridges to Access if you qualify income wise. The Mepron I got through them seems like the real deal. The stuff I received before that from my neighborhood pharmcy seemed perhaps watered down. Others here have thought theirs was watered down too.

Not to scare you it is just a thought.

PS. Dear Malarone and Mepron Buddies Berkas and booze go good together and we are having free shipping this weekend only on all berkas!

If you get too looped you just hide under your berka and no one well hopefully notice - best not wear Mepron nail polish on nails when planing to drink - it is a dead give away who is hiding under the berka.

I think we need to be more inclusive in the title of this thread because some of some are Malarone buddies too.

Trueblue Mepron is sunflower yellow and a perfect color for the walls. It beats neon orange the current ticklette color around these parts. I asked the ticklettes to tone it down for our Letterman appearance and to wear something more subtle but they refused.

Does anyone know if Letterman has some sort of connection to Lyme disease? Just wondering? I know he makes fun of it but besides that?

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cactus
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Hi Gena, welcome! The first time I took mepron, my main symptom was pain... after that, hot flashes, sweats and a fluctuating fever. All of those got worse and then slowly better. Some lucky people say they just feel better and better.

Vanilla has a great point about asking the pharmacy for a factory sealed bottle. I felt a little nutty asking for it, but that's one way to be sure you've got the real deal. They might have to give you a small unsealed bottle as well.

If you read the tiny print on your patient insert, you will see that Mepron needs to bind to fat to be properly absorbed. So don't forget to eat some fat when you take it - the jury's out on which fat is best, search for some of the old Mepron Buddies thread and you'll find lots of info.

Have any of you seen references to spirochetes converting carbs to ethanol? Does this mean we're loopy because we're a little drunk all the time? Is that why my sugar cheats make me soooo happy before the crash?

Hey six, will you share the magic genie bottle with all of us? My Mepron still tastes bad.

Lovin' the Mepron walls, but now I'm considering adding some orange ticklette accessories, and maybe a blue ceiling for true... It'll go great with a lavender berka.

Taking votes for a more inclusive title for the thread...

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Vanilla
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Think sunflower power!

Perhaps the berkas would be marketed best in a pyramid sales plan like Amway? At least then Charlie would have something to actually be king of if he qualifies that is.

Do not forget to vote tomorrow night 10 Pacific in chat.

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GenaD
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Thank you for mentioning about the mepron being sealed...I was given 2 bottles from Publix pharmacy and they were different. I just ran out to the kitchen to see if the second one is sealed; it is. I'm not sure about the one I started already. It is the pretty yellow color all of you are talking about, though [Smile]

I don't know what's going on, because I actually feel pretty good (for me) for the last week! I started Zithromax a week ago, and just added the mepron 3 days ago. I'm happy to feel good, but it doesn't really make sense??

I take my mepron with some avocado because my LLMD said it does better with fatty foods.

--------------------
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--Margaret Mead

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Vanilla
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Some say to take it with fish oil. Then you are getting 2 delicious flavors at the same time - yum!

Suggestion if you use fish oil make sure it is not from the trout that lurks in the chat room. I have the feeling that kind of fish is not up to the quality you would want to be consuming.

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sixgoofykids
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Oh, I am one of those who got watered down Mepron! I am still in shock over it!

Normally, the pharmacy gave me two factory sealed bottles and one brown pharmacy bottle. This particular month, it was two pharmacy bottles ... they said it was so it would be more convenient for me.

When I got home and took it, my daughter, who sees me take it every night, noticed it was thinner, too. Her description was that it didn't "bubble up" as much, meaning, normally it's rounded on top because it's so thick, this was flat in the spoon.

I went back to the pharmacy to ask about it, and they switched it back ... like I wouldn't notice! They called me over to another window to show me how it was the same as the factory sealed one.

Anyway, at my NEW pharmacy, I tell them I will not accept bottles that are not factory sealed because my old pharmacy watered down my Mepron.

Really, you DON'T want my Mepron genie... I never want to eat anything ... I'm getting pretty thin ... only three more pounds and I'm underweight.

I think we should include Malarone buddies, too. For that matter, it should be babs buddies! It rhymes better, and it's the babs that makes us so silly and stupid!

Interesting theory on the carbs ... I have to eat them or my stomach gets upset, but I always eat a protein with them.

I take my Mepron with a food doused in coconut oil ... that way I also prevent the yeast.

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GenaD
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That's horrible they'd water down the mepron! I'm sorry that happened! I don't have any "good" mepron to compare my bottle too, but now I'll be looking to see if it's flat in the spoon.

How long were you taking mepron before you noticed any reactions to it?

--------------------
"Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has."
--Margaret Mead

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Vermont_Lymie
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Hello! I am one of the malarone buddies

(isn't the active ingredient in mepron in malarone too??)

For three months and counting. Just a few more to go and then I am getting off this stuff.

I strayed a bit last night -- and had a delicious Belgian beer! It was so good.

You know the kind; high yeast and alcohol content. I have not had a drink more than once every month or so in the past year, and this was a treat!

But it turned me into an immediate yeast bomb! I could not believe that my entire tongue turned white within a couple of hours of drinking that lovely sole beer....

Has anyone else had that experience? I guess this is not from the malarone, but the high dose amoxy that I am on in addition to malarone...

I am going to have to stick closely to the anti-Yeast diet from here on in. [Razz]

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beachcomber
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VT:

I did a 5K race a month ago. (YES! I really did it & finished, almost last). After the race we went out for burgers and beer. I didn't want either. Let me rephrase that, I wanted both but knew I shouldn't. I got talked into it. Not too hard to twist my arm sometimes.

The burger tasted good and the beer even better. I declined the second round. I went home and started to ferment a few hours later. I also fell fast asleep. I awoke with a nasty yeast brewery going on in my belly.

I think beer has way too much yeast and carbs for us. But, I do think an ocassional libation can be rewarding and relaxing. Everything in moderation.

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sixgoofykids
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quote:
Originally posted by GenaD:
How long were you taking mepron before you noticed any reactions to it?

I intitially started on Mepron/Biaxin/doxy. I felt better, not worse. I didn't feel bad until I herxed about 24 days later. I have a 24 day herx cycle, but between herxes I feel better than I did before.

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sixgoofykids
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Beachcomber and Vermont, thank you! I am going to the race this weekend, health permitting of course. Your comments will keep me from even being tempted in the least by alcohol!!!

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Vermont_Lymie
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Beachcomber, thanks for sharing your story! Yes, that is what happened, that one beer generated its own little yeast factory!!

It is really impressive that you ran 5K! Although not entirely out of shape, I could barely do that in my pre-lyme days!

6Kids: yes, you do not want to go there, no beer for lymies.

I do allow myself one indulgence every month, and have found a sip of vodka does not turn one into a yeast bomb. But, be careful, absolutely no alcohol if on tindamax, flagyl, and probably a few other things too...

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GenaD
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Six,

Thanks for sharing that with me about it taking you 24 days before you felt anything. I guess there's still time for me to feel crappy [Smile]

I think I'm similar to you...I seem to be on a monthly cycle for herx reactions...It's really good that in between your's you felt better, though. It makes me hopeful!

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"Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has."
--Margaret Mead

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sixgoofykids
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Vermont, no beer for me anyway, I'm gluten intolerant. [Smile]

Gina, immediately upon starting the Mepron and other drugs I went from 15% to 25%. Now I'm at about 50%. Started Jan. 20th ... so they seem to be working. Hopefully for you, your schedule will be something like that!

They don't change around my Mepron/Biaxin/Artemisia, but they do change my other drugs ... sometimes that causes a more immediate herx.

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wchun
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Plaq did not make me herx that I can recall.
soon after taking plaq my eyes were not the same.
Just a minor reading problem which could be coinciding with my age.
almost 40 now.

Anywho....... my Doctor told me to wean down from plaq which I thought was odd.

You guys r hating mepron now but when you start to feel better...... Oh my you love the taste, the color and the thick paint like texture!

My mepron was as thick as paint. For the people who think the mepron is watered down..... call the pharma company. See what they say?

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cactus
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Heather, how long did it take to notice the vision problem? Was it quick?

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tabbytamer
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quote:
Originally posted by GenaD:
How long were you taking mepron before you noticed any reactions to it?

For me, one week. On the 7th day extreme depression. Extreme. But, then realized it was the Mepron so made it through.

Always keep your doctor informed of any change in your condition, physical or "emotional".

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Vanilla
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Gosh Tabby that would be nice if these LLMDs were interested in how we were doing but I have had two that seem not so interested because they have a difficult time even returning calls when you really need them to.

I wish they did care more. I find it a bit pathetic that they do not.

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trueblue
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I've been putting off posting this and still may change my mind.

I am having what appears to be extreme emotional lability (sp?) for a while now. I understand this is a Babs symptoms, possibly Lyme or Bart or even hormonal.

I am at a complete loss about what I can do to cope. It's becoming increasing more difficult (or staying the same but feels out of control and unbearable to me).


I cannot take any pharmaceutical anti-depressents. Is there is anything herbal, natural, homeopathic, etc... that might be helpful?

St John's wort works reverse for me as do SSRIs and tricyclics. (Big time hyper and no sleep at all.)


Is there something I could research that might be gentler or work on the other transmitters?


I don't know where to turn or who to ask. I'd like to go to the LLMD with a couple of suggestions for him to ponder.


Please tell me if this post is inappropriate here and if I ought to start a new thread.


Thank you for you patience and support and wonderful color schemes. [Wink]

truly blue (more than I can express)

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more light, more love
more truth and more innovation

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trueblue
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ps. I love the "Babs Blues Buddies" Title! [Smile]

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Vanilla
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Trueblue you posted in the right place and I want to say first that I am sorry you are going through this and hope it does not last long for you.

2nd what works for me is Ele-max by Tyler. It only has a tad of St. John's Wort in it and if you take it first thing in the morning it wil not keep you up and there are other things in it that will make you feel relaxed. If you want to try it start with one cap a day for a week before you go up to two caps a day.

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trueblue
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Thank you Vanilla  -

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Vermont_Lymie
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Hi true -- I started taking a TINY bit of pregnenlone (sp?) every day.

This is Buhner's recommendation -- actually, he recommends a much larger dose, but pregnenelone is a hormone precursor, so I only want to take a tiny bit. A small piece of the 50mg tablet, about one-eighth or less.

He recommends it as a mood/energy elevator, and it certainly seems to do so! Or, maybe all the amoxy is working.... [Wink]

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cactus
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True, I hope you're getting some good ideas to take to your LLMD... Emotional lability was an issue my first time on Mepron - but it passed quickly.

Maybe it wouldn't have passed so quickly had I not started taking Cymbalta for peripheral neuropathy? But that option doesn't sound like it's going to work for you.

And if you've seen my recent post, getting off of it is going to be a long, hard haul... So going natural sounds good to me!

I hear the Ticklettes will be on Letterman soon, that's always good for a smile. [Smile]

How are all the babs buddies? Any changes?

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�Did you ever stop to think, and forget to start again?� - A.A. Milne

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Vanilla
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I am a year older but nothing else new to report here.

It was a busy day in my one horse town today - tourists and locals swarming around like a herd of bees.

I hope everyone else had a good weekend.

I have been rehearsing non stop with the tickelettes and others are falling out of the trees trying to join the band.

Vanilla

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cactus
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Happy Birthday Vanilla! Hope you had a groovy happy day!

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�Did you ever stop to think, and forget to start again?� - A.A. Milne

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trueblue
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Thanks VT, Cactus and Vanilla,

Funny I was taking pregnenolone and 7 keto DHEA because my levels were low. But only for a few weeks but didn't see any difference. I've just had a full hormone panel done so am waiting to see how out of whack things are. (I suspect massively as I've fallen out of menopause. grrr...)

The pregnenolone was 25 mgs and at bedtime and didn't make me awake at all (and everything usually makes me awake).


I have made a lst of possibilities to take to the doc and we'll see what the bloodwork and MRI reveal, if anything.

Thanks guys!


So Vanilla... what songs are you and the ticklettes rehearsing?  -


VT, I hope the amoxy is doing the trick, too!

Cactus, I hope the taper on the Cymbalta goes easier as you go.

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KMP
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Babs Blue Buddies,
Have not been diagnosed officially with Babs, but I just went off clindamycin & quinine, herxing so much that I didn't realize I had started a UTI!
I have not been on mepron or malarone, but I think it was the quinine that caused my irritability/depression and I was only drinking tonic water. Went down to only a liter of tonic water (88mg of quinine, I believe)to almost stop the herxes. (I know it was not the clindamycin because I was on it for a week with no problems before starting the tonic water.)

Is it possible that Babs is in my bladder? I had a UTI 6 weeks ago just after Flagyl. LLMD put me on Bactrim for 2 weeks...then on to the clindamycin/quinine tx. So I am back on Bacrim again and feeling much better.

I should probably tell that in the past two weeks I have had a flooded basement with company coming for 2 wkends in a row for son #2 college graduation and son #3 high school graduation. So I have had a lot of stress...which usually ends up with UTI or vaginitis, or at least it used to, exception being the last 10 yrs. Was diagnosed w/Lyme in 8/06. [shake]

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God's mercies are new every morning.

Karla

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