I had undiagnosed Lyme for approximately 5 years. To some degree, I've been able to function though in a constantly confused / flustered state. I've been on antibiotics now for the last year; clarithramyocin and cefuroxime axetil.
Really though, I don't feel any better. The "pressure" has gone away but I still have almost all other neurological difficulties. Plus I have no focus, newly awkward social miscues, am very jumpy / overemotional, and sometimes paranoid and obsessive. I'm young, was bright, and this has destroyed my post-college life prospects. Financially, I'm nowhere near ok.
I don't really think I can live like this for the rest of my life.
So onto the happy stuff: how long till someone needs to switch ABX? Is switching even worth it?
Can I expect to get my memory back, my cognitive functioning, etc? One year is quite a while for no real improvement.
Is it possible to have this severe of an infection and recover?
Thanks anyone,
xxxx
[ 08-17-2010, 09:18 AM: Message edited by: thehause ]
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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kidsgotlyme
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posted
I think that you need to talk with your LLMD about your concerns.
Maybe he/she needs to switch you to something else. Also, are you addressing your issues with supplements?? Herbs??
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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If you've been on the same abx for a year I would switch LLMDs ASAP! You should switch your abx every few months at the most-- some even do it bi-weekly.
YES you can recover, BUT you need to be aggresive with your treatment. If you feel like you arent making progress, see a new Dr. or add a new protocol to the mix. You cant just stick with one thing and expect a huge change.
Posts: 844 | From CA | Registered: Apr 2010
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lululymemom
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What are you doing for the cyst form of Lyme? I hope you are treating that with something like Flagyl, Tinidazole..etc?
If you don't address that you are just sending them all into hiding..
You are on a good combination, just need to add one more..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Hoosiers51
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Different things work for different people, so in my mind, if something isn't working, it's important to switch. I would only give a combo about 3 months, if it isn't giving you slow improvement or a herx.
I'm not a doctor though.
For the brain fog, you may need something that treats Bartonella or "BLO" like Levaquin, Rifampin with something else like Zithromax, or Bactrim DS.
I would recommend that be the next step you take, going after bartonella. Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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I've been treating for 10 months with no change. I've changed it up a lot. So I don't know what to say except it sucks and I'm sorry. Some people seem to have luck, others seem to fail no matter what they try. In your case I think I'd try to mix up since you haven't done that yet. All the best.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Hoosiers51
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Also, ask your doctor about Low Dose Naltrexone. It would need to be called into a compounding pharmacy.
It helps the immune system, and I feel it was a turning point for me (www.lowdosenaltrexone.org for info on why it is thought to be beneficial).
I think all Lymies should try it at some point during treatment.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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Also, ask your doctor about Low Dose Naltrexone. It would need to be called into a compounding pharmacy.
It helps the immune system, and I feel it was a turning point for me (www.lowdosenaltrexone.org for info on why it is thought to be beneficial).
I think all Lymies should try it at some point during treatment.
There are also 3 pages devoted to it in Kenneth Singleton's book "The Lyme Disease Solution."
Posts: 4590 | From Midwest | Registered: Jun 2008
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I haven't really been supplementing too much because of fincial reasons and because also when I did, I didn't notice much. What specific supplements / herbs would you recommend? I had been taking Vitalzym and then some B vitamins and DHEA, DEA for a bit. Nothing too spectacular had resulted.
Apparenlty, my doctor is very good and I was lucky enough to get to visit him quickly via a fraternity brother being his son. I feel like I should stick with his plan, but I'll be honest, I'm losing the will. I don't know what other combinations would really change the basic principles of this treatment plan. Clarthromyacin treats the spore / cyst form of the bacteria, yes? Flagyl cannot be combined with alcohol and does the same thing, correct? What would Bactrim benefit me?
I have tested negative for Bartonella twice. I am currently waiting for results for XMRV, which is a whole seperate battle if positive.
I'll read about Naltrexone, though I am admittedly ignorant of it right now.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Has anyone heard of people having to try antibiotics for several years before any real result? Is this realistic?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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My LLMD explained to me, that my body had been broken down by lyme, and abx will not repair what has already been broken. Abx are key to fighting infection, but if your hormones are off, your metabolism, or if you are deficient in vitamins and minerals than you won't be able to feel better. He also said to switch abx every month if it hasn't made any noticeable improvements...
When our body is fighting we need to give it all the extra strength through supplements that we can...like building an arsenal so to speak.
Also, you may have developed certain sensitivites to foods, because your body has been broken down so much...You may want to look at a diet change as well... I am on Dr. B's supplement list and a gluten-free, high protein diet.
Posts: 71 | From Missouri | Registered: Jun 2010
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I know it's emotionally and financially draining, but it may be worth it if it works! If it's mostly neuro syptoms, then just take the neuro supplements that are recommended on his list? I hope this helps!
Posts: 71 | From Missouri | Registered: Jun 2010
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lululymemom
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Lyme needs to be dealt with in three ways. In the blood stream, intracellularly, and in the cystic form. The cefuroxime (Ceftin)you are taking deals with the blood stream. The clarithromycin (biaxin) deals with the intracellular form and now you need something to take care of the cystic form. Biaxin won't do that.
Of course you would have to deal with co-infections first otherwise you will not make very much progress.
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