I was diagnosed last year and went off/on abx 2 different times. The longest was 3 months (last year). This year, I got really sick again in Jan/Feb and started a new abx (minocycline) in March. Have been on them since (7 months)
I started feeling better pretty quickly back in March. I also started armor thyroid and B12 shots at the same time. I've felt almost normal from March to August. I had a few symptoms but nothing major. The best thing is my fatigue got a lot better.
LLMD said stay on abx for 2 months after feeling better. I did that. Decided to start weaning off. Only went off abx for about a week in Aug and immediately started feeling bad
Got back on abx but haven't felt good since.
2 questions:
1. Am I now building up a resistence to abx?
2. Will my immune system not work as well if I stay on abx for long term? Can it actually make things worse in the long run? (cause I feel like crap now!)
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In my experience, when you feel like crap so quickly after stopping antibiotics it is because you have a coinfection that has not been treated.
I switched doctors, got tested for coinfections, found out I had babs and bart, treated them, and then I did not relapse.
It's been over 5 years since I completed my lyme treatment and I am still symptom-free.
You need a good doc to help you. It is not building up resistence to antibiotics or your immune system not working so well.
Most lymies also have babesiosis. If you have not treated it, it probably is time to do so.
I had no symptoms of babs or bart, yet I had them both.
The coinfections cause you to feel sick again right away as soon as you stop meds. You started feeling sick in a week off meds. That's the give-away that it is coinfections.
If it was lyme coming back, you wouldn't feel sick for at least a month.
When I went to a lesser lyme doc, I had the same experience as you, twice.
He treated me for lyme only, and eventually I felt good. So, he had me stop meds. Only took 2 weeks for me to be a complete basket case. After so long, he told me to stop again. Same result.
Then, he said to me, "Well, you may just be one of those people who have to stay on meds your entire life." Baloney!
I dropped him, went to a Burrascano type doctor, got good treatment, and in a year I was done with treatment and done with these diseases.
Wish you the best. Switching doctors is often hard, but it was the best decision I ever made. It gave me my life back from this horrendous disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Wish I had known what TF is talking about because the same thing happened to me.
I treated lyme only and was feeling pretty well but then the bart surfaced and that has been plaguing me for two years. Bart suppresses lyme so I did not feel those symptoms until recently when it all came back.
I also suspect I may have lurking babesia. I just made an appointment with one of the best LLMD's.
-------------------- 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
All mi Igenex testing for co-infections came back negative and I don't really have any co-infection symptoms. My biggest 2 symptoms were always head/neck soreness and brain fogg. Taking Doxy and pulsing Flagyl. What are the chances I still have a co-infection and should I treat for them anyway?
Posts: 239 | From NC | Registered: Aug 2010
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posted
Head/neck soreness you can have it from bartonella ore babesia to .Brain fog can be from bartonella and candida ore mold.Try to treat coinfections as TF is sugesting and also have something for viruses on bord.
Take care
Posts: 482 | From Nebraska | Registered: Feb 2010
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I was two years into treatment before we figured out I had Bart and 4 1/2 years until for Babs.
I think we all have Lyme, Bart, Babs and Erlich and should just treat everything!
I never ever thought I had Babs - no symptoms! But I herx with the rife frequencies and it would definatley explain why I'm not in remission yet.
Posts: 1761 | From USA | Registered: May 2006
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posted
Will bring this up with my MD when I follow up in a few weeks. I've only been infected since May 2010 so I'd rather take all I can for a few months now then for years later.
Posts: 239 | From NC | Registered: Aug 2010
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posted
TF -- your recovery gives us hope. I've been treated for five years on just orals and over the past few months relapsed (completely crashed after a tetanus booster given to me by my LLMD in NJ). I'm thinking I need your LLMD. Could you PM his or her name?
Posts: 43 | From Florida | Registered: Jun 2010
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posted
I think the fact that you still had "a few symptoms" meant that you weren't quite done with treatment. You should be two months symptom-free.
What were your few symptoms? Those might be an indication of what is left to treat.
Also, when you wean off next time, perhaps take some herbs for detox and stuff that kill bugs to help you with the transition.
Remember also that some abx have anti-inflammatory properties, so part of what you feel coming off them is suddenly not taking the anti-inflammatories ... maybe take turmeric to help with that transition.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Regarding coinfections, Burrascano basically says that if you have had lyme for over 1 year, you have at least 1 coinfection.
Every person in Maryland that I know that has lyme also has babesiosis and bartonella. Every single one!
So, it is virtually impossible for a person to just have lyme disease. That is my conclusion. That is why some good lyme docs just automatically treat all lyme patients for babs and bart. I think it is an excellent idea based on my own personal experience and what I have seen with all of my friends.
I have also had friends with mycoplasma and ehrlichia on top of the "2 b's." Makes for a bad combo for sure.
I heard Burrascano speak at 2 different lyme conferences. At each one, he emphasized the need to treat coinfections. He emphasized that they are common, not rare as evidently many who treat lyme believe.
In his guidelines, he says that as many as 66% of all lyme patients test positive for babesiosis microti. That is just one strain of babs, and it is found in the blood of at least 66% of all lyme patients. So, just think how many have babs if a lousy babs test is finding it in 2/3 of all the lyme patients.
Here is the quote from page 23:
"Babesia infection is becoming more commonly recognized, especially in patients who already have Lyme Disease. It has been published that as many as 66% of Lyme patients show serologic evidence of co-infection with Babesia microti. It has also been reported that Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness. Subclinical infection is often missed because the symptoms are incorrectly ascribed to Lyme. Babesia infections, even mild ones, may recur even after treatment and cause severe illness. This phenomenon has been reported to occur at any time, including up to several years after the initial infection!"
Notice the word "subclinical." It means "without symptoms, without any clinical signs." So, this is telling you that you can have babs and have a negative test and have no babs symptoms.
Bocalyme, no sense me PMing you my doc's name. PM me and I will tell you why and give you some other doctors names if you are interested in flying to Maryland for better treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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My few symptoms that were left were the hair loss (not sure that is lyme related) and intermitten fatigue...but overall the fatigue was much much better. I will admit since I had been feeling so good I did start to have a glass of wine here and there and the times I did that I always felt bad the next day so I stopped alchohol again.
TF- You do give us all hope! The LLMD I go to said that minocycline also treats co-infections. Is that not correct? I thought I was getting them all with the mino. What else should I take for the possible babs and bart?
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Just a suggestion -- read Dr. Burrascano's 16th edition on diagnostic hints and treatment guidelines. This document really opened my eyes, and helped me to clearly see that my LLMD wasn't doing enough. Now switching gears and hoping for better results. Good luck!
Posts: 2238 | From East Coast | Registered: Jul 2010
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Minocycline alone will only partially treat Lyme and does not address coinfections.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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