posted
I have a positive IGENEX test and I'm positive by CDC standards. I finally got in to see Dr. F in Louisiana yesterday and he seemed a bit perplexed by my case.
He said that I don't have very many symptoms and that he isn't convinced I have lyme. This floored me b/c I believe this man knows what he is talking about and it gave me hope.
He said that we are going to challenge my lyme disease by having me take Flagyl 500 mg (4 times the first day) then have me take Biaxin on Day 2 and Day 3.
He believes that this method is better than a blood test!
He wants to see if I will herx. If I herx, then I do have Lyme. If I don't, then he believes I was bitten but my body fought it off and the positive test results are antibodies.
He said if I herx it will probably be on the first day. If so, for me to stop the antibiotics immediately, take benadryl and alka-seltzer gold and call his office immediately.
Does this sound right to you guys? I will be honest, taking antibiotics makes me nervous. I have only been on supplements and a new diet for the past 2 months with my naturopathic doctor. Along with using a rife and ondamed machine.
I was wondering if this would harm my gut.
A friend, who was floxed by one dose of leavaquin in November, is telling me not to take the antibiotics b/c the risk is too great. He says flagyl is a carcinogen and mutant. That it changes your DNA.
Any thoughts?
Posts: 26 | From Houston | Registered: Mar 2015
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posted
He is a very good LLMD, lymeboy. cfm has told me that she has very few symptoms. That should make any doctor be cautious about proceeding with full treatment.
The only hitch to this solution is that flagyl carries a lot of side effects with it and it might be difficult to tell which is from herxing and which are side effects.
I've never heard that flagyl could change one's DNA. Does your friend have any proof of that?
Levaquin and fluroquinolones are totally different meds from flagyl.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
It sounds to me like you have more of a latent borrelia infection. If so, the Flagyl has the strong possibility of causing a full-blown acute infection. I would be a bit cautious of this, especially considering the first day dosages.
If you do it, I at least hope the doc is ready to hammer the awakened beast with both barrels! And, I hope you're strong enough for a RIDE because it could be quite a doozy!
I personally would not recommend this approach because there are much safer and gentler ways to do a challenge.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
At the recent ILADS conference I attended the LLMD's were pretty much in agreement that a person would not have antibodies unless they had an active infection. Lyme is just not like other infections where the antibodies hang around forever - at least not for the vast majority of people.
Maybe you are one of the lucky ones who only has lyme and does not have any coinfections and that is why you have less symptoms than most people.
Even with only a 3 day challenge of meds you should be taking probiotics to protect your G.I.
Every doc has their own protocol for treating tickborne infections. The important thing is to understand the doc's treatment philosophy and have a plan.
I am not sure personally that just 3 days of antibiotics will cause a herx, but in my opinion you really need to do some sort of treatment or challenge to decide on a future course of action.
Good luck and let us know how it goes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My naturopathic, doctor who is very knowledgeable and wonderful (she and her family have lyme), has told me that my lyme is very low. However, she has detected that I have babesia and bartonella. I cannot remember which one is higher up on the list of problems.
She has been treating me with supplements, change of nutrition, rife and ondamed. I see her once a week.
Her concern is that all of the work I have been doing over the past 2 months to repair my gut will possibly be destroyed by these antibiotics.
Let me reiterate. I respect her and I respect the LLMD doctor a great deal.
I am also afraid of this waking up other things and making me more symptomatic and not just a herx that I get over in a few days.
Posts: 26 | From Houston | Registered: Mar 2015
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
quote:Originally posted by cfm11205: I have a positive IGENEX test and I'm positive by CDC standards. I finally got in to see Dr. F in Louisiana yesterday and he seemed a bit perplexed by my case.
He said that I don't have very many symptoms and that he isn't convinced I have lyme. This floored me b/c I believe this man knows what he is talking about and it gave me hope.
He said that we are going to challenge my lyme disease by having me take Flagyl 500 mg (4 times the first day) then have me take Biaxin on Day 2 and Day 3.
He believes that this method is better than a blood test!
He wants to see if I will herx. If I herx, then I do have Lyme. If I don't, then he believes I was bitten but my body fought it off and the positive test results are antibodies.
He said if I herx it will probably be on the first day. If so, for me to stop the antibiotics immediately, take benadryl and alka-seltzer gold and call his office immediately.
So if you don't herx after taking three days of antibiotics, you don't have Lyme???? Every person responds differently to different antibiotics. What works for one person may not work for another.
There is no guarantee that a person who has Lyme will herx within three days of treatment. What if the meds he prescribes are not effective for your case? What if the doses are not in the treatment range for Lyme? Some doctors under-treat.
To me this treatment theory is quite illogical. I have never heard of a knowledgeable Lyme doctor treating this way. You have positive tests, you need to be treated. You also need to be evaluated for all the co-infections. I suggest seeing another doctor, one who comes highly recommended.
Posts: 4681 | Registered: Oct 2000
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TNT
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posted
cfm11205,
How are you doing with your natural treatments? If you are high-functioning and life is pretty normal, I would say stick with that treatment.
But, if you feel you are worsening in spite of the natural treatments, then perhaps ABX are in order.
Some people have gotten worse in the long run by treating with ABX.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
Sammi... I think it is his way of playing it safe since cfm is not excited about plunging into full treatment.
I pretty much agree with TF on this one because if a person is not overtly ill their body may be able to keep it in check by following a more natural treatment.
I do know that when I was ready to get OFF of Lyme treatment, my LLMD had me take high doses of flagyl as a challenge. I'd have to look up the amounts, but it was more than Dr F suggested here.
I didn't herx .. so away I went! (it was a longer challenge also)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
It sounds ridiculous. You might have an adverse drug reaction and mistake it for a herx!!!
Biaxin would land me in the ER.
Also, not everyone has a noticeable herx.
Find another doctor.
"A friend, who was floxed by one dose of leavaquin in November, is telling me not to take the antibiotics b/c the risk is too great. He says flagyl is a carcinogen and mutant. That it changes your DNA.
Any thoughts?"
Yep, they can work similarly. Both cause peripheral neuropathy which is like cell death (changing the DNA so you can't heal properly would be my interpretation of that, more like a chemo drug).
Posts: 2839 | From California | Registered: Jul 2012
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posted
Thank you for all of your comments. I needed to take a step away from this for a few days to calm my nerves.
I went to Dr. F with an open heart and ready to hear him say, "yes, you have lyme. Here is what I would suggest for treatment and let's send your blood off to check for coinfections."
This is not what he said....he seemed confused b/c of my lack of symptoms and very positive tests!
I did not tell him I was opposed to antibiotics, b/c I wanted to be open to his suggestions.
I was not prepared for him to say, I don't know! But I loved his honesty and that he didn't just put me on a 4 or 6 week round of antibiotics. He genuinely wanted to do some more investigating.
But I don't think the investigation is worth the potential risk of the antibiotics.
I do agree that since I am not symptomatic that I should stick with what my natural doctor is doing at the moment. It is the only option I feel totally at peace with and I think that is a sign. The thought of me putting the drugs in my body sends me into a panic.
I'm not entirely sure what that is about, but for now I'm going to trust that is not a good sign!
Posts: 26 | From Houston | Registered: Mar 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Could you get a second opinion? It doesn't sound like there is a huge rush, since you said your symptoms are minor.
Or perhaps wait and see if the natural therapies help, then reconsider abx challenge if they do.
FWIW, if you are going the abx challenge route, I personally don't usually START to herx for a few days. Usually it's more like 4-5 days before I start to feel it, so I don't know if 3 days would be long enough to pick it up.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
I'm now being encouraged to get retested thru Igenex to confirm previous test thru Igenex. I guess my friends and family or wondering if I was a false positive the first time.
Any thoughts?
Posts: 26 | From Houston | Registered: Mar 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
False positives are hooey. I'm not sure friends and family have any say in this situation. They will not face the consequences. This is up to you to decide.
That is not enough antibiotics to destroy your gut, and a challenge is not unusual. Be sure you are taking probiotics two hours after every dose.
Some people have trouble with flagyl causing peripheral neuropathy. I did and was switched to tinidazole. But that one is more expensive.
Not sure you will herx with this regime. Some drugs don't cause herxing, some herxes don't kick in immediately.
So why did you go to a lyme doc if you don't want treatment with antibiotics? Naturopaths are fine for some things, but antibiotics are the first line treatment for lyme.
Posts: 2888 | From USA | Registered: Mar 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Getting retested through Igenex again will be a waste of money.
If you understand how the test works, you will know that. Read the explanation here:
If you were CDC positive, you met a very high standard for a positive.
I am assuming the encouragers are NOT lyme doctors. A lyme doctor would not suggest this.
I like your lyme doctor's idea of a brief challenge. Just know that flagyl kills many things including parasites, so many people without lyme get very sick on flagyl.
I got rid of lyme 10 years ago. About 3 years ago I was given flagyl for C diff. It made me extremely sick. It took about 2 days to get sick from it. I have a friend who never had lyme and she also gets so sick on flagyl that she refuses to take it.
I also got bad side effects to Bactrim when I was put on it initially for lyme. It gave me total anorexia (I couldn't eat a thing), total insomnia, and anxiety. By the 4th day, I was calling the doctor.
So, just know these things going into it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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