posted
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
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.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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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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posted
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
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 Posts: 290 | From New York | Registered: May 2007
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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. Posts: 2557 | From home | Registered: Aug 2006
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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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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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
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!!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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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...
Posts: 2557 | From home | Registered: Aug 2006
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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
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!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
Vermont, no beer for me anyway, I'm gluten intolerant.
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
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?
-------------------- IT'S ME! HEATHERKISS Posts: 22 | From lap | Registered: May 2007
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cactus
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Heather, how long did it take to notice the vision problem? Was it quick?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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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".
posted
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.
truly blue (more than I can express)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
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ps. I love the "Babs Blues Buddies" Title!
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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.... Posts: 2557 | From home | Registered: Aug 2006
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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.
How are all the babs buddies? Any changes?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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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.
cactus
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Happy Birthday Vanilla! Hope you had a groovy happy day!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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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.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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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.
-------------------- God's mercies are new every morning.
Karla Posts: 85 | From KANSAS | Registered: Jul 2006
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adamm
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Hey all, I've already posted a preponderance of questions on babs. related stuff, but I've got one more... There's a decent chance I'll statr Mepron this week...how often does it actually cause or exacerbate depression? I already have it, so I'm just curious as to what I might be in for?
I started mepron a week ago, and I was only expecting possibly nausea--I didn't realize until recently that it can exacerbate depression, and even cause hallucinations sometimes.
So far, I don't feel that it's affecting me or exacerbating my depression. I have what my LLMD calls moderate depression, and it gets worse at certain times.
But, I'm only a week into mepron...I may have a different story for you soon!
Gena
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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kelmo
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I would work up to full dose. My daughter started out of the gate on two tsp daily. By day four, she was seeing things crawling by in her periphery.
We backed off. By the fourth week..BAM...tears aplenty and hasn't let up much. Nights are worse.
posted
I was depressed the whole dang 4 months I was taking Mepron. Luckily I did not see any ants that were not there but I had a real ant invasion that went on all summer along with ugh water bugs/field cock roaches so I had no need to see any bugs that were not real with a house full of real ones.
I felt the whole time I was on Mepron that I was on one weird bad drug high. Once I was told that I was cured of babesia and to stop taking the Mepron I felt normal again.
Now I am on half a dose of Malarone a day for Babesia and it is not making me depressed at all.
I hope you do not get depressed while on Mepron but if you do there are other drugs besides Mepron that you can try and the Mepron did not work to get rid of my babd anyway after 4 months. Granted I think my first two bottles of Mepron might have been tampered with too.
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The Ticklettes have some other ghoulish songs they would rather do but I had to put my foot down about some of their song picks and in so doing so I accidentally killed two back up singers.
I think I might go see Dan Hicks June 2. I am actually surprised the guy is still alive.
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When I filled my first perscription for Mepron. I got 3 bottles. I only paid $25!!!!!! I'm getting another perscription, and this time I'm getting 4 bottles to last 3 months, and that will cost me $25!!!!
God, I love BC/BS PPO.
Posts: 310 | From TN | Registered: Jan 2007
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Vanilla
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Well I only paid $10 total for 4 months of the stuff but I would have paid lots more to not have to take it.
The left over Mepron I plan on using to do art work with.
I like making sunflower greeting cards. I may be famous one day for my Mepron art. Already I am going on Letterman with my Tickelettes.
Does Malarone make one delusional too?
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cactus
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Jason, Vanilla - you scored! My co-pay is $200 a month for Mepron. Ouch. I have BC/BS PPO too - just a different state. Maybe I need to move?
Vanilla, if you're going to keep putting your foot down & killing back up singers, you want me to ship you some extras? I've got a yard full, and they're ready to go!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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cactus
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Karla, I don't know about babs in the bladder, but many people on Lymenet have bladder issues, so you might get more info with a search or if you start a separate thread about it. It seems possible to me that it's babs related, or at least TBI related.
Also, stress can cause a major flare up, so if you've been under a lot of stress that could be a player in your recent experiences, too. I hope you feel better soon.
Adam, not everyone has depression with Mepron, but some do... Let your doc know that you're concerned about it. Oh yeh - did you find an LLMD?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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I talked to my LLMD yesterday and told him how I have been on mepron 7 days now and still I haven't herxed and actually felt pretty good.
Just last night when I went to bed I felt it coming on...those tingly chills! I spent the whole night in a cold sweat!
Today I'm more exhausted than normal because I just couldn't sleep. Do these sweats happen every night? What about every day?
Adam, I still don't have any more depression than usual! I'm praying that stays that way, but since it seems things are only just beginning, who knows???
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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cactus
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Hey Gena, congrats! The yellow paint is working. Hang in there, it might be a rough ride.
It's different for everyone, but for me, the first time around on Mepron (almost 2 years ago) the sweats were more intense at night, but all day too. With alternating chills and hot flashes.
I could sleep in a 67 degree room with the ceiling fan on full blast and still feel too hot, at times. Nothing like your own private summer...
It lessened with time.
Much easier this time around (I'm treating a relapse)... although I still have the sweats, too.
Keep us posted on your progress!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
As horrible as last night was, I have to say I'm happy to know that the fun yellow stuff is actually working!
I'm going to have to sleep by myself. My poor husband couldn't sleep because our dog was trying to play nurse to me all night. We have a Boston Terrier that sleeps in the bed and had to have known something was wrong. He kept sleeping practically on top of me, and sometimes when I woke up he was sitting up looking at me!
Cactus, did you have the cold sweats every day? I have noticed that so far today I have them a little, but like you said not nearly as bad as at night.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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kelmo
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posted
My daughter's palms are dripping during the day.
Be ready for this, too. Sometimes you get real STINKY. She sat in the sauna yesterday and I had to air it out.
She was actually running a "normal" temp yesterday.
trueblue
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posted
Gena,
When the Babs flares for me I get alternating chills and sweats. Very often wake up sweaty, an hour of so later go back to bed with 2 blankets and shaking chills wake up hot and mildly feverish...
Sometimes this alternates all day and sometimes only cycles once. I run a lot of evening fevers.
Kelmo, Sweaty/clammy hands and feet are one of the reasons I realized I need to treat Babs. (I am also completely heat intolerant.)
I used to be able to wear sandals but now my feet slide right out of them. I wear socks all the time to keep my hands and feet dry. For some reason not having wet feet helps the hands.
Man, when I came here and read the symptom list I was floored. All those symtpoms that were being written off by docs as peri-menopause for 15 years were Babs sx. (I also had a positive test 9 years ago that my ex-LLMD insisted was self limiting.)
Vanilla, Personally, I do think Malarone can make one delusional but, to date, have not had any hallucinations. More's the pity.
Though, I do seem to have come out of my weeping phase, for now. Stress and emotional stuff has been taking it's toll. Yeah, I needed that SSDI review to come right now.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Thanks everyone for explaining all that to me...Do the sweats get more intense as time goes on? Last night was no fun, but doesn't seem as intense as what you guys are describing.
I also thought I was in perimenopause...then I was CERTAIN I was in early menopause. My hormones were out of whack and I was treated by a hormone specialist for a while, only to find that of course the drugs didn't work for long because the true cause was the tick infections.
I was so relieved to find out what was wrong and not just be chasing symptoms anymore.
The "stinky" thing was interesting. But it makes sense! The bad stuff is coming out!!
Ok, here's a gross symptom for you...Do any of you have post-nasal drip? I have had this for years.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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Vanilla
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Trueblue I hope everything goes smoothly with your "interview".
Just pretend they are aliens that just came out of a space ship and they will be leaving right after the interview to go back to Mars. Picture them in pink tutus while they are talking to you.
Cact I would love to have some new back up singers but no need to send any. I have plenty here who are lining up to get interviewed.
Not all of them can even sing. I have no idea how I am going to get the new ones up to speed in time for Letterman.
Rolling Stone of course is trying to book an appointment for a interview.
Fame is happening so fast I think I will need to hire some PR people soon.
I am starting to think Malarone might make one just a tad delusional but the jury is still out on that one.
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kelmo
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My daughter's SSDI interview is tomorrow morning. Due to the overload at the office, they insisted on a phone interview.
All we want is a letter of disability. That way she can stay on my husband's policy. We aren't even pressing for compensation. Although that would help with out of pocket expenses.
Good luck True...let us know how it goes. I think of you often.
trueblue
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Good luck to you and your daugther with the interview tomorrow. *crosses fingers and toes*
Other than the one nasty, innapropriate woman (who I have since reported) everyone at SS has always been very nice to me.
Vanilla, I haven't got an interview I have 14 pages of forms to get filled out. I'm in no condition to be doing it right now. Having difficlty organizing, proiritizing, using things like calendars... It involves 3 narratives and I'm not sure I can ever write them.
The forms came with a letter that said if you have problems call and they'll find someone to help you. So I called and was told, "nope, no one in this area".
Thanks, though, I'm trying really hard not to think about it and am obsessed at the same time. I haven't found anyone to help, either.
sorry I have been through this before and this review is being done because they lost my last one from less than 2 years ago. I never saw this coming and there was no warning. /rant
Gena, yeah to post nasal drip but think it is more living in the south than TBDs. I had it on and off up north but it's constant year round here. (I've been using Xlear nasal wash and that helps some.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Vanilla
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True wishing you good luck and with the paper work.
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posted
Kicking the dog out of bed isn't as easy as you'd think! We have put him in his kennel and he cries and cries...And of course we reinforce his behavior by letting him back in the bed!
Six, I'm sorry you're flaring...Feel better soon.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
Thanks. This flare started with a cold ... last Monday I caught a cold. Two other family members caught it, too, but it was pretty disabling to me ... I'm thinking it must be the Lyme because most of the symptoms are Lyme symptoms. Is it normal to flare with a cold?
Unfortunately, my herx is due in two days.
Yeah, dogs can be harder than kids. I'd put him in the kennel and use ear plugs. I now wake up at the slightest noise, so I wear earplugs or hubby keeps waking me up all night.
I'm just funny about needing to sleep in my bed.
Hopefully the sweats will go away soon. I seldom have them anymore.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Why hasn't anyone complained about the crazy dreams on mepron. Oh boy was I sooooooo disturbed by my wacky wacked out dreams. If I didnt lose my mind then I guess I never will.
Buying quinine water tommoorrow to go with my malorone, art, biaxin and valtrex. Yiperooni!
Malorone is working well for me.
-------------------- IT'S ME! HEATHERKISS Posts: 22 | From lap | Registered: May 2007
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trueblue
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woohoo! go Heather!
I have wild Artemisinin dreams. phew!
Maybe I need some tonic water, too, I'm not progressing at all.
I'm treating for almost 20 weeks. I seemed to herx really badly between 3 and 4 months and am worse than when I started. I am not having fun.
I don't know what I am doing wrong. I don't want to do this. Why can't anythign get better, even a little.
*looks around* this is the place I'm allowed to whine, right?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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I used to have dreamless sleep; I wish I still did!
Six, I always flare when I get a cold. If someone is sick around me I start overdosing on all the supplements I can, because what's a little cold to someone else usually knocks me on my butt for days.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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I'm sorry you've been feeling worse...I guess you're herxing???
I'm confused. The night before last I had the cold sweats and as miserable as they were at least I knew the mepron was working.
Last night nothing happened. I told my LLMD just a few days ago that I wasn't feeling anything from the mepron and he said I should increase my dose. I haven't done that yet because I had the sweats a day after he said that.
But last night, nothing. I do want to know the disgusting yellow paint is working!
Trueblue, I hope today is a better day!
G.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
hi everyone,
i am feeling like a dog myself today. I am up to about 10 g/day of amoxy in addition to the malarone, just in the last couple of weeks, and it is working (on my brain!).
I have my classic tight muscle-herxes, in addition to the brain fog herxes. Just got the name of an acupuncturist to see, cannot wait to treat this symptom. Due to lyme and babs, I have had very tight shoulder muscles for years now!
True, good luck with your paperwork! Everyone, my best wishes for your health.
Someone mentioned getting cold chills from babs treatment? Just wanted to say that was worst during my first two months on malarone. Better now, though still occasional chills. No more night sweats unless the AC is not working!
Posts: 2557 | From home | Registered: Aug 2006
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi everyone,
Gena, I have a friend who only had the sweats one or two nights - until she added artemisinin. I also think everyone is different - some people seem to think the herx at week 3 or 4 is worse.
True, how's the paperwork?
VT, sorry you're feeling so bad - I'm right there with you on the tight muscles. Ouch. Does acupuncture help?
Vanilla, Six, and all the others who've had watered down Mepron - I think I'm joining the club.
Posted about this in the Mepron bottles and seals thread, but my latest "partial" unsealed bottle is like the consistency of milk, not our beloved house paint. Doesn't taste right either. What do I do??
Oh, and the Mepron dreams are a doozy!!! Crazy stuff. How can a med do that to our brains?
Everyone else, I hope you're well... Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Cactus, thanks for the mepron info. Just wish I knew if this is just how my body reacts to it or if I need more, or to add artemisinin or what!
And all this watered-down mepron business...It makes me so angry!!!!!!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Ok, have to give y'all the latest update on my new made for TV drama, "As the Mepron Gets Thinner"...
I took both my bottles back to the pharmacy and showed the pharmacist how different they were. He saw it right away, said it shouldn't be that way, and offered a replacement.
Here's the thing - I watched the tech fill my replacement bottle, and she really shook the stock bottle, so it came out thick (yum).
But then I watched while she combined 2 other partially full stock bottles into one larger bottle, and she didn't shake them well enough.
It came out thin and watery. She noticed (since it was the topic of conversation) and tried to shake them up better, but even I could see that she didn't get all the thick goo to come out of the bottle.
So now their combined stock bottle is probably diluted?
I don't think it's deliberate, I just think it's stupid. I think it's the pharmacy techs who don't shake the bottles well enough.
Not sure what to do about it... Any ideas? Maybe those little packets?
For now I'm going to go do a sunny yellow foot soak, and wait for the new Ticklettes CD...
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Packets! No problems for me with those. And, as WC pointed out, you can move about with them. If I am out to dinner (which is rare) I can just take out a packet and suck it dry of the thick murky gunk. No mess or spoon or carrying a bottle around.
I don't like the storys of watered down Mepron. That stinks.
Posts: 1452 | Registered: Feb 2004
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Vanilla
Unregistered
posted
Cact I would call GSK and tell them that by the time their million dollar yellow goo reaches you for whatever reason it is not as thick as it is suppose to be. This should be a concern of theirs that their product is being compromised over and over again.
They need to hear it from all off us so maybe one of these days they will do something about. The little packets are too costly on a product that already is too costly they need to make smaller bottles which they can afford to do.
It is bad enough to have to take the goo and taste it daily and to swallow this junk in the hopes that it might kill some bugs.
It should at the very least be thick enough to be doing users some good. It did nothing for me after 4 months of choking it down. Maybe if my first two bottles were thick enough it might have worked.
I hope everyone here feels healthy and sunny and better shortly!
Regarding the upcoming CD and CD release party - As soon as we finish recording Milkshaking Mama - in a couple of weeks the CD should be out.
Yours truly,
Vanilla - the girl who keeps the ice cream
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posted
Cactus, the only suggestion I would have is to go to a different pharmacy and hope they have better routines in pouring the meds. I've never had a problem with the smaller bottle ... my whole order was thinned down ... I think they took two bottles and stretched it out to fill the order.
Vermont, ten grams!! My LLMD just added amoxy and said to start out with one 500 mg. pill three times daily, then each day up each dose one pill until after four days I'm taking four pills three times daily.
Well, after four days, between the amoxy and the cold, I was really hurting. I can't imagine ten grams. I think I need to ramp up slower than that. I went back to one pill three times per day.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Ok, a while back we were talking about the paranoia on mepron and the crazy dreams.
Lately I've been dreaming that my husband is bored with me! REALLY bizarre dreams!
He is my soulmate and a wonderful man, and I know this isn't happening, but instead what it is is that I feel I'm letting him down because I'm no longer the "vibrant" and sexy woman I think he always saw me as.
He is so supportive, but I feel like I'm nowhere near the person I used to be and this must be difficult for him.
My fears are coming out in crazy, scary dreams!!
And still no cold sweats, just the one night. Guess I should increase the dose or add artemisinin like my LLMD said.
I can't imagine the horrible dreams then!!
I hope everyone is having a decent day...
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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butchieboo
Unregistered
posted
I have'nt read all the contributions on this thread and until recently never had the displeasure of drinking mepron....
I have concluded (by adding my personal experiences to the thread posts) that at any given time durring this disease....
we lymies can and do have sweats,dreams,depression etc....as part of a herx reaction to whatever abx we're treating with....
I have had all these symptoms with at one time or another and had never been on mepron once...in nine years....
I think it's just coincidental...as I am now taking mepron and I don' have the depression or crazy dreams I have had on other abx's....I think
it's just when or where we are in the phases of our particular strains....and our bodies reacting to the fight we are waging against the strains...
I have noted my sweats and hot and cold feelings a little more with the mepron....but not the psychological stuff...
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
True. My daughter had her phone interview with SSA yesterday. The woman was very kind to her. She said that she had Anna's LLMD in their database. She was also shocked how much medication she was taking.
We didn't even talk about supplements!
Hope yours went well. Haven't heard from you, so you must be exhausted.
By the way. I cracked open a bottle of Dr. Zhang's art and took one capsule yesterday. It wasn't long before I started a headache and felt really tired. This morning, I felt athsma symptoms.
I may start taking them every other day then work up.
There was a message in my inbox imploring me not to take art. So, it is a little frightening. We may or may not continue with it.
posted
Kelly make sure you get a liver panel done first because my acupuncturst said it can be a hard on the liver.
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kelmo
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posted
Dr. does monthly liver panel checks. My daughter and I are always low normal. We have had to give up the detox tea we drink lately due to mepron not liking it, or something like that.
posted
A few things that helped were taking low-dose iron supplements, CoQ10, and provigil.
Celebrex--which can have side effects--and Jarrow theanine also helped.
Provigil actually turned the whole thing around. It can make you a little too Sandy Duncan for other people's taste, but it greatly improves your concentration. A week after starting it, I was suddenly able to research online and found some additional malaria drugs that got rid of the stupid thing.
Mepron also caused liver and kidney problems when taken longterm. These can affect your energy levels.
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posted
I was told the same thing about CoQ10 from an LLMD.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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Vermont_Lymie
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Member # 9780
posted
quote:Originally posted by liz28:
Provigil actually turned the whole thing around. It can make you a little too Sandy Duncan for other people's taste, but it greatly improves your concentration.
A week after starting it, I was suddenly able to research online and found some additional malaria drugs that got rid of the stupid thing.
liz-- that is hilarious, I wonder what happened to Sandy Duncan?
More importantly; what malaria drugs was it that got rid of your babs? Thanks!
Posts: 2557 | From home | Registered: Aug 2006
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I hope everyone's hanging in there and starting to have some happy good days!
Hey, a while back we were comparing Mepron co-pays... I forgot to mention that when I called GSK about the runny Mepron, they told me that they have several programs - not just Bridges to Access - and they have some kind of reimbursement program for people whose insurance under covers their drugs.
Kelly, did you get a positive test, too? I'm sorry to hear that, but glad that you have answers to some of your questions. Let us know how it goes on the art...
I'll be adding in art this week.
My LLMD says no to the Co-Q10 when on Mepron, too. Also no milk thistle.
Speaking of supplements, anyone want to share what they're taking & what's working well for them?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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kelmo
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Member # 8797
posted
My tests haven't come back, yet. I decided to try the artemesia (400mg) Hepapro brand. I took one on Thursday, and had a headache that lasted all day. I felt wiped out. It lasted into friday, so I decided to start every other day and see what happens.
Saturday, I took one and my muscles hurt when I worked in the yard a couple of minutes. It wasn't strenuous. It was passing, and I was able to walk the dog later.
Today, I had breathing problems, brain fog and fatigue. A little low headache and heavy head feeling. My stomach also ballooned up making me look pregnant.
My daughter said those were part of her early symptoms, she could recognize what was going on.
I must be hitting something. I'm really not looking forward to this process. But, I was thinking that if I am swimming alone and have a seizure, that would not be good. I need to be around for my daughter.
I don't want to count my chickens, but I really feel a little herxy.
posted
Ok, supplements...My LLMD had the lab draw 51 VIALS OF BLOOD--I didn't know I had that much to give--but I found out a lot about what I need.
I'm taking an under the tongue chelator for my mercury issues every morning on an empty stomach. (Can't remember the name right now). I knew I was toxic for mercury months ago, in fact I thought that was the whole problem because the symptoms are so much like Lyme.
But then something told me have a Lyme test "just to be sure" and found Lyme. (But that's another story!)
I'm taking iron, the "ferrous heme" kind--supposed to be the best kind.
Also I'm taking NAC. It helps with energy and with making gluthione.
Ginkgo Biloba, LOTS of Omega 3's (pure)because I don't make enough of something that makes and opens capillaries, Vitamin E, and a regular multi-vitamin.
Oh, and probiotics, of course.
I found an website that sells the supplements wholesale and I seem to save a lot of money. You guys probably know about it, I'm sure.
I WAS taking Mgc6 to help with increasing my NK cells (mine were very low) but I just stopped taking them because I realized CoQ10 is also in them and I know that it makes mepron less effective.
I NEED the disgusting yellow paint to work!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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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 Posts: 290 | From New York | Registered: May 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Kelly, your symptoms certainly do sound herxy... There's a lot on your plate right now, so if you can, try to take it easy. Will you be seeing the same LLMD as your daughter, I hope?
When I tried going straight to 400mg of art last year, it was intolerable by day 3. Hopefully taking it every other day will help prevent something like that.
I added in art (a wimpy 100mg) today, and haven't felt anything new yet. My LLMD asked me to work up to 400 mg daily, but to go at it slowly. So I'll add 100 mg more every week for a while.
Gena, thanks for sharing your supplement info! I love vitacost, too - really seems to have the best deals.
Ok, here's my current list (in addition to Mep, zith, omni, plaq, and art), I've been doing the same thing for quite some time, so it could probably use some adjusting:
Methylcobalamin injections (daily, ow) Theralac probiotics DHEA (I was deficient) Carnitine (I was deficient) Magnesium Malate (helps with energy) Multi-vits/mins Fish oil Detox foot pads (do these count?)
I've also just ordered S. boulardi (can't spell it, sorry), and I'm thinking maybe I should add something for detox but I don't know where to start...
Healthy thoughts to all, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
51 vials of blood!!!!! Who says doctors don't bleed their patients anymore. Nowadays they bleed their patients under the disguise of "blood tests."
Posts: 984 | From San Diego | Registered: Nov 2006
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Vanilla
Unregistered
posted
I was looking at all the nail polish colors today at Whole Foods and you guessed it they had one that looked like a perfect Mepron match.
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Ooooooh, Mepron yellow toenails, here I come!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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My LLMD just added amoxy and said to start out with one 500 mg. pill three times daily, then each day up each dose one pill until after four days I'm taking four pills three times daily.
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