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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone our there actually feeling better???So confused!

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Author Topic: Anyone our there actually feeling better???So confused!
shassler64
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Member # 3479

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Hi! I am so sick of being sick.Have had 2 years now of IV abx off and on and I don't think I have improved at all ,or hardly.I think I am wasting my time but am so confused about what I should be doing.

The magnesium thing confuses me completely.Don't know what to do with that.The salt/Vit c makes me feel sick,and now I have been reading about garlic and oregano oil.I have tried cat's claw which did nothing.I am getting to the stage where I think there is nothing which is going to help and I should just give up with all this crap and let my body try and pick up with out all the crap I am putting into it as it isn't doing anything.

What do you think??

Sue from Downunder.


Posts: 801 | From Kiama,Australia | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
liz28
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Hi. For me, the reason for unbudgeable Lyme turned out to be co-infections.

My current protocol is as follows:

Lyme: omnicef, ketek
Babesia: mepron (10ml/2x day), artemisinin
Bartonella: septra, ketek
Yeast: nystatin
Inflammation: celebrex, L-theanine

I also took flagyl for a long while, and did do the DMSA heavy metal detox for four months.

My Lyme recovery had stopped dead in its tracks for over a year. Then, this September, I started on ketek with omnicef, and the two together (though not by themselves) demolished 85% of the Lyme. What were left, were two totally separate handfuls of symptoms, one of which corresponded exactly to babs, and the other exactly to bart.

I've had more improvement in the last four months than I have in the preceding four years. Some of my most wicked symptoms turned out to be bart, not Lyme.


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riversinger
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quote:
Originally posted by shassler64:
Have had 2 years now of IV abx off and on and I don't think I have improved at all ,or hardly.

Sue, if you really have been on and off antibiotics, that could be part of the problem. Lyme really seems to need a consistent treatment. On and off can potentially lead to reisitant bacteria.

Have you been taking anything consistently? If not, I would start there. The next thing I would look at would be coinfections. More and more people are finding these are an important part of the picture, even when they don't show up on tests.

the diagnosis can be made based on symptoms, and response to treatment. Do some reading on here about various coinfections, and see if anything sounds familiar.

------------------
Sonoma County Lyme Support
[email protected]


Posts: 2142 | From California | Registered: Nov 2003  |  IP: Logged | Report this post to a Moderator
klcst
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Member # 3427

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I only went down hill on IV. I responded well to Doxy 100mg BID and 500mg of Biaxin(not time released) BID. I am part of a support group and the people following this protocol actually are getting to symptom free. They have their coinfections treated first and then they go on the above abx's for the long haul. They all said that at a year to 18 months was when they actually felt well most of the time. Several have been on abx for 3-4 years and they are symptom free and off meds, but you have to keep stress at a minimum to stay symptom free.
I wish you well.

Lisa


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Beverly
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Member # 1271

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Hi Sue,

Staying on abx pretty much consistently for two years and then treating the co-infection Babesia has helped me a lot.

Hope you find something that helps.


Posts: 6641 | From Michigan | Registered: Jun 2001  |  IP: Logged | Report this post to a Moderator
DolphinLady
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So far I've only been diagnosed with lyme. Coinfection test done twice have been negative while lyme keeps coming up positive.

I was bitten over 10 years before correct diagnosis of lyme. For two years before finding out about the lyme I was put on steroids. So I was in pretty bad shape when I finally started abx treatment.

Have been on abx for 21 mos - different combos and continually make progress. Its a roller coaster ride with all the herxes and side effects, but my progress is steady and sustained. I thank my lucky stars.

BTW I've only done oral abx (vs IV or IM) and a few different combinations.

There is hope, hang in there.

Finally, don't just rely on the abx. You have got to hit the buggers from different angles. Only you can decide on appropriate adjunct therepies like saunas, exercise, herbs, body work etc.

Good luck.


Posts: 925 | From California | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
minoucat
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My story's pretty much the same as Liz28s. Having done every abx and herb combo in the galaxy, and having remitted and then relapsed many times, the bicillin IM, mepron/zith/art, omnicef/ketek, samento, metals and yeast detox, and liver flush seem to be working. Wasn't until I hit babesia then bart, as well as Bb, that I started seeing real changes this time around. I've been on abx long-term -- short term (as in 3 months and less) rounds of IV just seemed to make me worse in the long run.

Time will tell if recovery continues, and then holds. But I'm pretty optimistic.

Also just started using the sauna. Definite effect there, too, although may be mostly clearing toxins.


Posts: 2331 | From WA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
   

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