lymey
New Member
Posts: 4
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Post by lymey on Sept 30, 2005 17:17:37 GMT -5
Hello, I am looking for some advice about the babesiosis treatmentof lyme. My wife has just finished 3 months of lyme treatment using the ketek/flagyl combo. Her doctor thinks that she should be closer to recovered than she is. He has put her on zithromax and mepron for 3 weeks to kill any possibility of babesiosis infection. She has been on the mep/zith combo for 2 days and is extremely emotional, having massive muscle spasms and muscle pain. Do other people have these sort of herx reactions while taking these drugs or is something wrong? Any advice would be helpfull. Cheers
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Post by Patti on Oct 1, 2005 4:27:06 GMT -5
I am wondering if your wife's doctor tested her for Babesia or just thought she might have it since three weeks of abx did not seem to cure her Lyme? Is her doctor a Lyme doctor? If she's been sick for a long time, three weeks of treatment won't be enough and I would recommend she get tested for all of the coinfections of Lyme if at all possible.
Sorry to say that many people do herx like she is and it's no fun. It really helps to have an understanding support group around when you are experiencing what she's going through and I commend you for the concern you are showing......she is very lucky to have you.
The truth is that many people need extra help with pain meds when suffering from chronic Lyme, not to mention the horrible herxing that they go through. She also may need to pulse her meds until she adjusts, though I would let her doctor decide whether to do this and just how much. You should also let him know what she is experiencing on this new regimine, though it's pretty much to be expected.
I know some people here have had experience with the Mepron and hopefully they can give you some insight about what to expect.
Good luck to both of you and let us know if you have anymore questions.
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Post by Administration on Oct 3, 2005 11:27:08 GMT -5
Many I know of have these symptoms with the babesia herx. Mepron and Zithro didnt work so well for me so we tried Rifampin and for some reason that worked better. I was very emotional.. suicidal..all the aches and pains... fevers and sweats as well.. Lasted for me maybe 5 months and then subsided a bit.. Patti is right.. what Doctor is telling her only 3 weeks of Mepron/Zithro will kill off Babesia? Took me 9 months to kill mine off.. and I know others who are still trying to kill it off after even a year and a half on meds.. Just so you know.. she can never donate blood again or be an organ doner.. not that she should be thinking about that with the Lyme.. but with babesia you are kind of "branded" for life. Kerry
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Post by Administration on Oct 3, 2005 11:31:00 GMT -5
Ok.. I re read this. 3 months of Lyme treatment? Has she just been bitten? Even if she just got the bite I would still reccommend at least 6 to 9 months of abx.. better safe than sorry. Are you seeing a Lyme literate Doctor?
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lymey
New Member
Posts: 4
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Post by lymey on Oct 3, 2005 12:19:43 GMT -5
Thank you all very much for the information. Yeah, Lisa is seeing the top Lyme doctor in western canada. We are not sure how long she has had lyme, one year of misdiagnosis for sure (standard mono, chronic fatigue, MS), but she has been unable to work since January 05 and has been on meds since July 1st. You guys are awesome thanks again. Cheers
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Post by Patti on Oct 4, 2005 8:30:55 GMT -5
Yeah, Lisa is seeing the top Lyme doctor in western canada. It looks like she is in good hands then, Lymey. I would just let her doctor know what she is experiencing right now, so it can be on record. He might want to slow down the introduction of those meds into her system....adjust the dosage or pulse it. Many times the onslaught of new medications is too much for us to handle and going slow is the better way, even if it's not the most popular with patients. Best of luck and keep us posted.
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Post by Herx on Oct 4, 2005 18:07:31 GMT -5
I heard about this drink for a Herxheimer reaction, which might be what's going on. Try it, and let us know.
The recipe follows: 1 lemon, skin, seeds and all 2 cups of water 3 tablespoons of good quality olive oil Stevia to taste.
Cut the lemon into 1/8s to give the blender a fighting chance, place all of the ingredients into the blender, liquify and drink all of it.
It looks like skim milk, but tastes like lemonaid. Quite good, actually.
Stevia is a plant based sweetener, a small amount goes a long way.
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EXPLAIN THE JARISCH HERXHEIMER REACTION. This drug-induced flare reaction may occur within hours, the next day or within the first weeks after the patient starts the antibiotics - or any time there is a change in antibiotic or dosage. It is caused by a die-off of organisms, which in turn create toxins that circulate in the body. This will often cause a worsening of symptoms. Patients may experience a range of symptoms from mild fatigue and sleepiness to flu-like symptoms - chills, low grade fever, night sweats, muscle aches, aching and swollen joints, nausea, hives, skin rashes, depression and short term memory loss. Hives and rash are sometimes mistaken for an allergic reaction. When this occurs, it is a good indicator that the antibiotic is reaching its target - a very positive sign. The length of time for this reaction varies from patient to patient. About twenty percent of patients do not experience the Herxheimer reaction.
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Post by Administration on Oct 5, 2005 12:19:49 GMT -5
I am concerned about the 3 months of treatment.. If she has been sick that long, then 3 months isnt enough. If she is seeing a good Lyme Dr, he should know this. And keep in mind.. the herxing shows its working. When I was herxing badly, I just kept in mind how much I was killing off and that always made me feel better.
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Post by Newby on Oct 5, 2005 20:26:45 GMT -5
After 4 years of being told that there was nothing wrong with me, I was finally diagnosed with Lyme and Morgellons. I am presently on gamaglobulin every two weeks and Rocephin, 4 grams per Day. I am experiencing all sorts of entities both externally and internally, as well as brain fog, lethargy, hallucinations and thoughts of suicide. Being aware of herxing has helped me enormously, as when I am "seeing things" or feeling that I can't go on, I know that it's because these buggers are finally being killed off. The use of full spectrum light bulbs is very helpful, as is good or bad comedy and smooth uplifting music. I have also found that the use of favorite colors and using potpourri, apple scented, helps elevate my mood. God Bless.
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Post by helpingmyfriend on Oct 5, 2005 23:09:57 GMT -5
Newby I'm trying to help my friend who has this. I believe you are in NYC, yes? We are too. If at all possible, can you share who your doctor is? If that makes you uneasy I'd be glad to correspond with you so you might become more comfortable with the idea before making any referral. I'm registered so you can send me a private message. Thanks so much. M
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greg
New Member
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Post by greg on Oct 7, 2005 1:25:26 GMT -5
Been on this for a few months, and I do notice the difference. Go to: MyVitanet.com and find Artemesinin 100 Mg. capsules. I take 1000 to 1200 Mg. per day. It's kind of expensive. Someplace you may be able to find 200 Mg. capsules, I've never taken the time to look. I read a study from a Chinese Journal, that said how it works.... It enters into the Red Blood Cells where the Babesia Parasite dwells. When it comes into contact with it, an oxygen molecule ignites, destroying the Babesia or Malaria with the resulting toxins. Like a microscopic BOMB! Any treatment for a long term infection is LONG TERM! Just set your mind on 1 year and see how you progress.
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greg
New Member
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Post by greg on Oct 7, 2005 1:37:16 GMT -5
Also, Artemesinin is not the same as Artemesia. Artemesinin is one chemical component of only one species of Artemesia, which is Artemesia Annuna. (a Chinese species) Artemesinin is used worldwide, except in the U.S. Also, the pure Artemesinin is 100's of times stronger than the plant of Artemesia Annuna which contains only about .03% or something like this.
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Post by Newby on Oct 7, 2005 2:26:41 GMT -5
M.
Yes, I am in NYC and would be glad to correspond. I just don't how to reach you privately.
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Post by Newby on Oct 7, 2005 23:27:25 GMT -5
M.
Was hoping to hear from you via this forum. If you instruct me, I will send you an e-mail. Sorry, but I have an Apple and I haven't figured out how to register myself. For some reason the Lymebusters info never reaches me.
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Post by helpingmyfriend on Oct 8, 2005 9:33:15 GMT -5
hi newby you can email me at marjorieposting-1@yahoo.com thanks!
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Post by LES Morgatroid on Oct 10, 2005 0:19:40 GMT -5
FWIW I like the Drs I've seen in NYC OK, but'm also right now impressed with the online vibe of a Dr Leo Galland (& maybe even his sometime cohort, a Dr. Bolte IIRC) -- see www.mdheal.orgThere're some good detox svcs available (one Dr I've seen works there too) at Olive Leaf Wellness Center; I dunno if I'd call these fellows specifically LLDs, though. Also -- eat at Caravan of Dreams, if you're in NYC; IMO it's better'n meds to eat that healthy food, no kidding; their feed's a tonic and they deliver free in manhattan if yer order's >$35. IMO quite well worth looking into FYI.
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Post by Orion*** on Oct 18, 2005 3:09:49 GMT -5
I have been on the Mep/Zith protocal for 8 weeks now..My reactions at first was extreem fatigue--brainfog-insomnia-loss of apitite. nothing else till this last Fri. 10/14/05 when I started the muscle twitching--left arm and leg, This can become very disconcerting and frightening. and flu like symptoms. I did the lemon thing mentioned in a previous post and it helped a lot. Herx not so bad today (mon,) When I first began the abx I would pulse them to adjust. Chlorella is an excellent detoxifier---drink plenty of water.A god B-complex and mineral supliment is a good idea..> > I also want to do the samento protocal with the abx but I will ask my Dr. LLMD--this Wed. if it is advisable. I'll try to get back here and report. This by the way is an excellant thread. I have had lyme for at least 30+ years--Babesiosis since 1991--and filariosis morgellons syndrom for The babesiosis just about killed me,,,I went blind for a while with accute uveitis---but no proper diagnosis. The existing medical community has been a detrimental rather than a help. Be careful which Dr. you chose. Hypothyroid and adrenal fatigue goes along with the territory as does low blood pressure. Having to go to the bath room every 15 minuts don't help much either, especially in company. My nicname was TB which stood for teeney bladder, :-)
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Post by Orion*** on Oct 18, 2005 3:25:37 GMT -5
Funkie--my words that I post are changed and nothing I do can correct it ==like M-I-N-U-T-S turnes into mycool .. Very strange===Last night it turned P!$$ into pee. I'm bugged. LOL
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Post by Administration on Oct 19, 2005 18:06:17 GMT -5
lol.. sorry Orion. I know, the message board has its own mind and if it detects even something close to what can be misconstrued as a "dirty word" it changes it to what it wants..lol Drives me crazy as well. The babesia is what almost killed me too.. I was off the charts and the herx was really like having malaria.. what Ive seen on TV anyway.. Just keep in mind everyone.. when starting these long term meds.. Lyme and its co infections have a tendency to "reverse its symptoms".. so what symptoms you have already had.. you may get again and even worse as the meds are working. I noticed that I got really bad.. worse than before starting the meds.. then the symptoms seemed to come on harder, yet all in the order backwards.. Very strange how it works.. Amazing as well... The pain.. thats where I started and thats where I am now..I slept and was so tired for so long during the meds.. but in the beginning I had insomnia.. I am having that again so Im hoping I am almost back to the start of it.. Altho from what I hear most people who have had Lyme untreated for a few years, 4 years is the average that it will take to get better.. But as you all know..everyone is different.. some meds work better than others, depends on whats been hit. how you take care of yourself on the treatment and so forth.. The main thing to remember is we are all here going thru this together.. and we will get thru this! After what we have been thru.. we can handle anything!
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