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Posted 10/7/2009 3:25 PM (GMT -5)
Hello, all! I haven't been here in awhile and I hope that everyone is doing well. I had a good month but now I feel like I am having a relapse. Has anyone else experienced this even after a 4 week course of antibiotics? I felt great ( not completely healed) for a few weeks but the last 3 days have been awful. The main symptom that has returned is the vision problems and sometimes the red blotches. My family dr. said that another round of antibiotics probably wouldn't be beneficial so I don't know what to do. I did have an appt. with an infectious disease dr. but I canceled it because I was feeling better. I have an appt. with my eye dr. next week to see if there is damage to my eyes.

Any info would be appreciated! Thanks
Posted 10/7/2009 4:38 PM (GMT -5)
Hi Sophie,

Unfortunately, 4 weeks of antibiotics is almost never enough to even put Lyme in remission. I wouldn't call what you are experience a relapse so much as a continuation of your original illness.

If you can, you really should see a LLMD (lyme-literate MD). They specialise in treating Lyme, and will give you the treatment you need to get better. There is a member here who has a list of LLMD's and can help you out (I think it's Ticker, but I could be wrong...someone will be along to correct me and give their email address soon enough I'm sure). I don't have the information right now, I'm sorry.

But the important information to have is that Lyme disease requires more than 4 weeks of antibiotics, unless you are very, very lucky, and catch it very early.

If you want more information on treating Lyme disease you could go to the ILADS (International Lyme and Associated Diseases Society) website. If you click on the link for "Dr. Burrascano's treatment guidelines", you will get a pdf that describes in detail the general treatment plan followed by LLMD's. (Your Dr may not follow Dr. B's guidelines exactly, but you can use them as a reference to see approximately what sort of treatment is required, and for how long).

I'm sorry you're feeling worse. Hopefully there is no damage to your eyes!

Nicky
Posted 10/7/2009 4:46 PM (GMT -5)
HI all!
Yes it is Ticker that usually has that info.

- and my 2 cents worth? I agree with Nicky. Six weeks is the minimum time, when you catch the infection early. I would heavily suggest that you get in to see a LLMD. He/she is really the only ones qualified to determine if & when a tick-borne illness has gone chronic.

I've read in several places that they can go 'chronic' in as little as 2 weeks if your body's stress load is too heavy.

Honestly - don't let that scare anyone - that is not the purpose. We just need to be informed.
Posted 10/7/2009 6:07 PM (GMT -5)
Find a LLMD. They will give you the proper treatment. Your infection is still early so you will probably be good to go if you get treatment from the right doctor. ID docs are not the best if they follow IDSA guidelines. You need an ILADS doc...they will take care of you. Good luck
Posted 10/8/2009 4:38 AM (GMT -5)
Thanks, everyone~

Nicky, even though I improved significantly, you still think it's "left over " symptoms and not a relapse?
Posted 10/8/2009 6:46 PM (GMT -5)
Sophie-

Ok, it could also be in my definition of relapse. Since Lyme has a life cycle of about 4 weeks- if you did not get the original infection under control, than feeling worse again after a month seems to me to be just the original infection getting worse again, now that you don't have antibiotics to hold it in check. Also- the fact that you only had "considerable improvement" makes me think maybe it wasn't gone. If you've only had Lyme for a short time, you should be able to get back to normal. For example, ILADs recommends treating Lyme patients for 1-2 months after their symptoms disappear.

Now- if you'd been off antibiotics for 6 months or a year, I'd be more tempted to call it a relapse. But it's really more semantics than anything. Relapse or not, you're still sick, and that's the main issue.
Posted 10/8/2009 7:06 PM (GMT -5)
Most lyme patients cycle with symptoms especially during the earlier stages. I thought I had the flu and then a month later another flu. I thought some of my symptoms were menopause, like migraine, hot flashes and pain in my shins and legs. Once in awhile my muscles would cramp so violently it felt like they were torn. I was convinced my eyes were raw because the pharmacist had doubled my hormone prescription and went to 4 different pharmacies to get it refilled. When I started treatment I got better, quit abx after two months and then got worse. There are times I am sure I am well and then it comes back. If you can get to an LLMD early in the course of your treatment, you have a better chance of getting well. Some people never do. They just keep fighting. Just keep in mind that you need to go a minimum of two months with no symptoms at all before you consider yourself well. And sometimes symptoms can become so normal to you that you forget it is even a symptom - I hope you find the right doctor that knows how to help you.
Posted 10/8/2009 7:16 PM (GMT -5)
Hi Sophie,

Nice to meet you but very sorry you are not feeling well.   I am curious if you followed any type of detox regime while you were taking antibiotics as toxins will make a person feel horrible if they don't detox correctly.

Hope you feel better,

Denise

Posted 10/8/2009 7:46 PM (GMT -5)
Hi Sophie,

I'm so sorry you're feeling bad again. Often times, doctors don't give enough antibiotics or a high enough dose to treat a new infection. Here is a great site to read about dosages and other good information to read:

Dosage

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Our long time member, Ticker, can help you find an LLMD. You can email her at ko_@bellsouth.net

Give her a few days to respond:)
Posted 10/11/2009 11:28 AM (GMT -5)
I recently *thought* that I was relapsing, too, but realized that it has been ongoing, persistent Lyme rather than a relapse.

I was diagnosed in 9/07 with the thought that this was AT LEAST my 2nd infection, and I have NeuroLyme. GP put me on 3 weeks of Doxy with no improvement. Did 30 days on IV ceftriaxone and then 8 more months of minocycline. Was taken off of abx mid-July 2008 and by the end of the month, my abdomen looked as if I were 5-6 months pregnant so was diagnosed with systemic Candida. LLMD put me on Nystatin which helped maybe a little but then when I finished the meds, everything returned. I stopped seeing my LLMD and started treating with an anti-fungal specialist and truly believed that ALL of my symptoms were Candida-related and not Lyme-related.

I have just recently realized - with the help of friends (1 being a fellow Lymie who led me here - THANKS!). I have every symptom I had before with new aches/pains but the fatigue is not as bad as it was 2 years ago. My neuropsych issues however are very pronounced. I feel incredibly stupid for not recognizing it as Lyme but then it is the Lyme that causes my inability to think properly, so there ya have it.

Traci
Posted 10/11/2009 12:12 PM (GMT -5)
Hi Traci,

Welcome to the forum! I'm sorry you had to go through all of that. Yeast can give you terrible symptoms as well. Are you currently seeing an LLMD?
Posted 10/11/2009 12:17 PM (GMT -5)
I emailed my LLMD with symptoms and am calling tomorrow to schedule an appt. I literally *just* figured out this is Lyme-related this past Friday! Duh. lol

Thanks the welcome ;-)
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