Topic: when is lyme done and it's just abx symptoms?
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
As I near the end of this long journey into the world of lyme, I am wondering if perhaps some of the symptoms I have are just from my tired body being subjected to antibiotics day after day.
I'm on the last co-infection and I'm feeling a lot better, though my stomach is not the greatest.
How did folks feel their last few months? I feel I need to somehow prop up my body to be ready to come off of antibiotics though I really don't know what to do.
I have a kid coming off of antibiotics in a few weeks so this question, of propping up, is good for her too.
Thanks for your thoughts.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
I'm in the same boat Jackie, I think my lingering symptoms are from mold. We are in the process of remediating so it will be interesting (to say the least) to find out if that is the cause. I have the genes that don't detox Lyme or mold well. So I'm hoping that this will wrap things up!
Posts: 845 | From Northeast | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It would be a good idea to have your CD57 levels checked. I thought I was out of the woods with lyme but my test results proved otherwise.
But I also have the MTHFR mutation which makes it difficult for me to tolerate long term abx. I do get side effects that are similar to the infections. When I quit malarone, most of my babesia symptoms went away.
I am taking a break from all the drugs but I will probably have to go back on abx at some point to clear up the rest of the borellia infection. I hope taking the right vitamins and supplements for the mutation will support my immune system better and help me detox etc so the drugs will be more effective if/when I need them again.
Since starting the supplement, I have had a decrease in symptoms instead of an increase. If/when things go down hill I will add the drugs back in. I am taking a lot of tinctures to help me keep things at bay as long as possible.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
I too thought I wasn't ready, but turns out my LLMD was right. My remaining issues were fungal and also mineral imbalances (caused by Lyme and the treatment itself, and years of treating my body like he..).
I had to continue to stick to a restricted diet, agressively treat yeast, continue to take acidophillus, and address my magnesium deficiency with IV and IM.
Once I tackled the yeast, my blood sugar leveled out, which in turned resolved my energy issues. I continued the thorough supplement regimen I was on during treatment, and spents a few months on Diflucan.
So sometimes it's not all from Lyme - but you do still need to fix the other messes, as they do not go away without help.
Good luck to you and congrats on getting this far!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
When I felt I was ready, I did several rounds of high dose flagyl to see if I would herx. (I didn't)
Then I did a cleanse and hit the yeast very hard .. making sure it was not causing any "lyme" symptoms. Continued probiotics and continued the DIET.
I felt great when I got off the abx. Woohooo!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Diflucan, which addresses the candida, also hits the cyst form of lyme. One protocol for treatment is to take 50 days of diflucan followed by a penicillin type drug for a month.
So if you treat for the candida and don't have a herx, like Lymetoo did, then you are probably clear - because it didn't send any cysts into the active state. If you do get symptoms, take the abx.
This is what I plan to do.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
This is where I am at now...I not longer really herx like I use to. My I might get a headache here and there but would think that is NORMAL.
My lyme related sx are mild nerve pain, a few heart skips here and there which I think are more gut related and mild anxiety which is can also be gut related.
All of these sx can be come for yeast / gut issues. So I am working on the yeast with Oregano and trying to watch what I eat but I will ask the doc to stop abx and work on healing my gut and deal with parasites...if I still have Lymes I can re start abx.
A clue for me is that when I flight now I dont get pain like I used to...
Posts: 324 | From Philly | Registered: Jun 2010
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posted
I am in the same boat too, and have been searching for answers.
My LLMD has me getting off antibiotics one-at-a-time. So far, so good, but I am hesitant to stop what has helped me the most, and afraid of relapsing.
lymeinhell, when you say your LLMD took you off abx, one pill at a time, can you please explain? For example I'm on Tindamax (500 mg bid) and supposed to get off it next. Would you reduce it by one pill (500 mg.)or stop Tindamax altogether in two weeks?
Jackie, if you're looking for something to prop up your body - have you tried LDN? I found this, along with vitamin D3 to be a big immune booster.
Posts: 964 | From san diego | Registered: Oct 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My oldest son is nearly symptom free. He is down to one week a month of antibiotics. It will catch anything creeping out. I think that is the theory.
His CD57 just came back at 119- almost there. He still has babesia and his testosterone is still low but D3 is good.
He was my "healthy" kid we thought and he will be nearing 2 years of treatment this summer. I hope he tries to break free of abx in July.
I worry so much about ending too soon I can't even tell you.
My other son is better but not really close. He was bedbound at one point.
I, too, have considered LDN.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
Kt, I hear the cautiously optimistic tone in your voice. I hope your oldest can get off the antibiotics. As long as his immune system is good, he should be able to handle it, especially since he is young.
LDN really works. I've been in treatment 2 1/2 years, and on LDN for almost two. Didn't notice much until the last nine months, when my pathogen load was down. It might really give your son a boost. My last CD57 was 227. My LLMD said they vary greatly, so I'm hoping it stays that good.
Hopefully you'll find the key to helping you other son continue to improve. It's always so much easier to deal with "our" stuff, then having kids that are sick.
Posts: 964 | From san diego | Registered: Oct 2009
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Keebler
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