posted
hey all, I could really use your ideas right now. I don't know what to do. just a brief summary: i've had lyme for 5 yrs; treated for 1...i've basically only been on biaxin/plaq/ceftin..which I did awesome on. I started on mepron/zith on June 14...now I feel like HELL. i just finished my sixth week; this past weekend i could barely get out of bed. SEVERE pain and fatigue...i felt better on biaxin/ceftin. I don't know if this is a herx or a i'm relapsing; don't know how to tell and don't know what i should do...but i'm barel functioning right now...any advice i would greatly appreciate. don't know how much more of this i can take. sarah
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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artbyjessie
Unregistered
posted
HI Sarah, Sorry you are feeling so badly. I don't have any advice since I am going through the same exact thing - went off of DOXY onto Omnicef in mid June due to teh sun reaction and ever since have felt sick. It's a bummer - I am sorry you feel that way :-(
posted
Hey Jessie, He thinks it's working because I feel like such crap. I don't know what to think. It's pretty brutal, though...
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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posted
Perhaps when you first took the new meds it didnt effect you because you werent in your cycle when they come out but then you have hit it and now your killing the new form they have taken.
My doc says when you herx so sever to back off the meds till you feel better then add less to start back up.
Sounds like your getting those buggars tho.
I herxed the whole month or thought i was but actully i think i kept the toxins in my system why i never felt good. But i also think now i have damaged my system. i dont know if i will every feel what is normal from it. Hope so tho. Also if this is your first time on mepron sounds like babesia herx to.
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
I felt truly terrible my first 2 months on mepron/zith, even though I'd done a lot of other abx before taking it. It got a little better after the third month; now, close to the fourth month it's getting a lot better fast.
For me, headache, severe fatigue, and my legs were killing me.
So very possibly a herx.
Have you tried any of the liver cleanses, like coffee enema or lemon/garlic/olive oil? At first, I was on the 3 weeks on and 1 week off; I did a major liver and colon cleanse on my week off and felt much better.
posted
I haven't done any cleanses; I really sure. I'm relying to much on medication; and it's beating the $%#W out of me right now. Thanks for the advice. How do I do the cleanses?
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
When you can, it's also good to do a complete colon flush, but I don't think you can do this on abx -- it will interfere with abx absorption.
I also take a liver support combo with milk thistle every day.
Here's the immediate info:
liver cleanse
Put the following in a blender: ~ One cup of fresh squeezed Citrus: use orange, grapefruit, tangerine, lemon, and/or lime. Make the combination as sour as possible. You can dilute this mixture with purified water. Add ~ One to two cloves of garlic. ~ One small piece of fresh ginger. ~ One tablespoon of organic olive oil. ~ Blend the above ingredients and drink immediately.
Follow with two cups of a cleansing teas, such as Jason Winters or dandelion tea. It is preferable to do the liver flush drink in the morning on an empty stomach, and then wait an hour before eating.
You can do this 5 days in a row. ----
Coffee enema
Dr. Roger's recipe
2 flat tablespoons of coffee per quart of water, boiled for 5 minutes. She recommends adding one tablespoon of unsulfured molasses for each quart of coffee solution. The molasses is not supposed to be a problem for Candida or yeast the way it is used here. The molasses aids in retention, since you want to be able to retain a half quart at a time and to hold it for 10 minutes. The molasses does make it easier to last the full ten minutes without as much discomfort.
To keep it from being a high enema or a colonic, she advises that you do NOT exceed 1/2 quart of coffee at a time. She recommends that you use the coffee at body temperature. She mentions hanging it at waist level so that the coffee will flow very gently and not with force.
Dr. Rogers also advises that organic coffee is best, but she also says that for the short amount of time, any caffeinated coffee is OK. If you have to use city water, she advises boiling it for ten minutes first, to "boil off the chlorine" before making the coffee.
The theory is the caffeine directly stimulates the physical actions of the liver and gall bladder to clear the toxins. Alkaloids in coffee also stimulate the production of glutathione-S-transferase, which is an enzyme used by the liver for detox pathways run
posted
Thanks so much, mino. I'm going to print these out and try them, probably after my third round of mep/zith.
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
About 2 months into mepron/zith I got a friend who is a massage practitioner to give me a gentle but thorough massage. This helped SO MUCH with the leg pain.
I'm taking artemisinin too. Caused terrible headaches, spaciness, and irritability at first; no longer, though, so I think I must be rid of much of the babs.
posted
Jordan- High fives; I have the knee pain too...and spine pain, and hip pain..the fun just doesn't stop! Do you suspect it's helping then? I wondered if it was helping or I was relapsing. Hard to tell what's what, though..But this is rough stuff. One more bottle; don't know if I'm going to make it ...
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Life -- our LLMD treats for 2 months past the time you last show sx. Babs seems to have a high relapse rate if you don't do the longer term tx. Which means I'll be on the protocol at least 6 months, and my husband for longer.
Dunno what your LLMD's approach is, but it sounds to me as if completing only one more bottle won't be enough -- you either need to continue mepron/zith, or do an alternate babs tx.
Just something to ask your LLMD about....the good news is that when the symptoms start subsiding (usually about the 4th month, it seems) you really do feel a lot better.
My husband is also taking plaquenil; this helped a great deal with the pain (plaquenil having an anti-inflammatory effect; it's also considered to be a cyst buster). There have been concerns about its immune-suppressant effects, but from the research I've done it's more of an immune system modulator and not a suppressant. Can't say for sure, and I'm not sure anyone really knows. Also concerns about its toxicity -- hasn't been a problem for my husband, but has been for some.
He's also taking celebrex, sort of a 2 weeks on, one week off cycle, and that helps with the pain too.
beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Sarah:
I have done 5 months of Mepron, 4-1/2 with Zith. The first 2 or 3 months were pretty hard with fatigue, headache and muscle aches, including tooth and neck pain. This is better now. My MD intends to keep me on it until I am pretty clear of symptoms. I am guessing that 6 months will be the minimum that I do. I only took one 7 day break and neck pain returned then.
I felt better on Ceftin too, but never felt entirely well. Hitting the Babs really made a difference. I could tell by the herx reactions.
Hope this helps. Hang in there. It does get better. Others on this topic helped me stick with it.
posted
You guys are the best; thanks so much for all your input. I guess I should just try and stick with it at this point..
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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I dropped my Mepron in the kitchen and about a third of it went all over the floor and on some cabinents!! Oy Vey, what a mess.
Yes, im sticking with it. Maybe its working now since i have been feeling so terrible.
Funny thing, i feel like i have a fever but i ususally dont. That was one of my biggest complaints was a low grade fever. So, maybe i am getting better....
posted
I am not on mepron but i suppose the herx symtoms from babs in the same.
Interesting the tooth pain and joint pain. I got joint pain from lyme treatment but this is interesting because i feel better in the am which i havent done in a long time when the meds have wore off. BUT the JOINT pain is horrible. Every joing in my body aches specially hip, back,shoulders.
posted
jordan- oooh..i feared doing that; at least you have a good sense of humor about it. I just talked to my llmd; he said try and hang in there...said this is a roller coaster and a half; an understatement.. graneet- I'm with ya; every joint in my body is killing me right now...
Posts: 588 | From Wallingford, CT USA | Registered: Sep 2003
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Hang in there. I dont know how you guys do it. Three days into mepron, I had the worst vertigo of my life. Not to mention severe anxity and shortness of breath ( all side effects listed on www.google.com but not really mentioned in the phamplet that comes in the Mepron torture bottle)
Each and every one of u are STRONG for being able to stay on this.
Graneet: I did six months of clindamycin and quinine. Mepron BLEW ME AWAY with the symptoms.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Life, yup it's the Mepron Slam. That shi* knocks the shi* out of you. I'm on it w/Biaxin & it just rocks me silly. Hang in there.
Jordon, that's the most expensive spill next to the Exxon Valdez! LOL!
posted
Oh and i forgot i had tooth pain yesterday so i was surprised when i seen teeth issues.
Crime.. I wonder if you have a really big load of babesia ya think.
I got nausea a little today with the first two doses. I get nothing with the even doses. The quinine is just bitter.
But the herxes are going right along with you all. sever joint pain, muscle pain, Hot and cold which is so far leveling out, and muscle weakness, the headache gets to me sometimes but it comes and goes. Thank goodness.
Its doing something because i havent felt better even off meds for a very long time.
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