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Posted 1/11/2016 9:26 PM (GMT 0)
Currently on my fourth month of antibiotics. What little use of my arms I had, has gotten worse. I no longer can drive, and I can hardly hold anything in my right hand. It seems to have worsened quickly.

I know you feel worse before you feel better, but I just want to know that I'm not in some endless spiral.

I also have been detoxing as much as possible with several methods.

Just looking for some reassurance if anybody has had similar experience. Thanks in advance.
Posted 1/11/2016 9:32 PM (GMT 0)
I'm so so very sorry that you are having to go through this!!

Have you had the MTHFR gene testing done to help determine if you have the gene mutations that make it hard to detox?

You said you've been using several methods to help you detox - do you mind listing them? We might have some more 'easy' suggestions for you that might be of help.

And, maybe you can elaborate on your time line a bit more? Do you keep a symptom journal?

Did you change something (change a dose or add in or take out something that you were using)?

What infection are you currently treating? It's possible that while you were treating one infection and lowering that bacterial load, another infection that you have has now become 'top dog' and brought it's symptoms to the front of the picture.
Posted 1/11/2016 9:34 PM (GMT 0)
Not all antibiotics or antibiotic combinations work for everyone. If you are feeling nothing but worse and no improvement, maybe you should be switching your treatment. You should not be constantly herxing.
Posted 1/11/2016 9:46 PM (GMT 0)
I started losing muscle in my left arm about five years ago. Then my right arm, along with twitching and pain and tingling. Stiff neck, that cracks all the time when I turn it. Then I lost hearing in my left ear two years ago.I have had sleep issues, mild brain fog, mood swings, and vertigo. (most of these are better)
Went through several doctors, finally got the blood test I needed and found a LLMD.

Igenex test:
IGM Western blot – positive
Positive Bands: bands 23 – 25, 30, 34, 41, 58. 83 – 93 IND

IgG Western blot – negative
Positive band: 41

Tested for a bunch of co-infections but nothing came back. I did have Mycoplasma and some other kinds of bacteria.

I have not had the gene test, but that's something I can bring up with my LLMD

As far as detox:
water with lemon
milk thistle
activated charcoal
Epson salt baths

I'm on the following medications:
Doxycycline
Azithromycin
Tinidazole
Fluconazole
Posted 1/11/2016 9:57 PM (GMT 0)
We will have to wait for someone better versed with abx to come help you with that part. Sorry.

With your symptoms being mostly neuro, I would think that you likely have Bartonella as well as Lyme - but that's a guess.

You WB is rather overwhelmingly positive, with all those Lyme specific bands.

I would encourage you to increase your detoxing, but I would also echo what Sarah said - if, after increasing your detoxing significantly you only continue to worsen, then abx may not be right for you. That's what happened to me. I only got worse and worse until I stopped the abx and detoxed from them. As a reminder, we have good detoxing suggestions in the 'New to Lyme?' thread and this is also a good site for detoxing ideas: www.tiredoflyme.com/detox-methods.html

So much of this requires detective work for some of us. Hang in there!!
Posted 1/11/2016 9:59 PM (GMT 0)
Have you been on any other protocols prior to the one you're on now?

It might be time to change it.

You may have a confection that needs to be addressed first.

Also, you should add in some more detoxing...Alka seltzer gold, Burbur and Pinella, oil pulling - a few ideas for you.
Posted 1/11/2016 10:36 PM (GMT 0)
I see in your signature line - that you've just been on the one protocol.

I'm wondering if you have Bartonella co-infection, as some of those symptoms could be attributed to bart.

I treated lyme for 9 1/2 months....and had some improvement..but IMO not enough for that length of time.
I am now treating Bartonella. I now think that Bartonella was most likely my dominant infection...and should probably been addressed sooner.

Has your LLMD discussed bartonella with you?

While some LLMD's will treat bart with a tetracycline (eg: doxy) and macrolide (eg.Azithromycin) - it's often not effective.
Rifampin is one that many LLMD's prescribe (with one of: doxy, mino, biaxin, zithro)
Posted 1/12/2016 12:26 AM (GMT 0)
I agree with what's been said already.

And, that's quite the heavy-duty protocol.

If increased detoxing (which you need to do regardless) doesn't help, you really do need to change your protocol.

The latest thinking is addressing coinfections early. My LLMD didn't do that and my treatment became protracted.

Healthy people are walking around with asymptomatic Babesia and Bartonella infections - even the CDC acknowledges this (if you'd like a link, please let me know).

It's entirely possible Lyme patients are dealing with these coinfections and that's why many LLMD's treat for the "Big 3": Lyme, Bart and Babs.

Bartonella has become so common that scientists are saying Lyme should be considered the coinfection. You could opt to treat for the coinfections with herbs. They can safely be taken alongside of abx and don't destroy gut bacteria. Support herbs also go a long way to dealing with these infections.

No matter what, we can't kill ourselves trying to kill the bugs. Please work towards getting back to baseline and crafting a protocol (abx & detoxing) that will lead you to healing with less or no herxing.

If you think you need to lower your dose or take a different abx, please call your LLMD to discuss. Each of us winds up taking a different path because everybody's body is so different. Communicating with your doctor can help you get the best possible treatment.
Posted 1/12/2016 6:33 AM (GMT 0)
Art testjng said rmsf was showing primary for me...Tini could be the culprit can u pulse?are you on b6 .?..heard it depletes..nerve damage etc..are you supplementing mag etc...bart sounds plausable, switch to alinia?.castor oil packs .get liver numbers checked...im where you were at 4.5 years ago.... nac for the mycoplasm. And lots of olive oil. I am rooting for you rmgarrett.
Girlie if you could do it from scratch how would you go about? I go see about picc /port tomarrow...eeek..
Posted 1/12/2016 7:17 PM (GMT 0)
Looking back, I would have only stayed on the Lyme antibiotics for maybe 4 months...and then changed over to bart treatment.
This also may have prevented having to stop for 2 1/2 months (due to high liver enzymes)...so I'd be several months further ahead now.
Not only because of the two reasons above, but also in the 2 1/2 months break...a few lyme symptoms came back...

How would I have done this - considering it is my LLMD who is prescribing? Better communication...I would have emphasized my bart symptoms....he usually leads the conversation, asking me about the symptoms.
Part of the problem was it took me awhile to realize that bart symptoms were indeed my dominant symptoms....I really should have emphasized them.
Posted 1/12/2016 10:37 PM (GMT 0)
you're on a tetracycline, macrolide and 2 azole's. that's a good combination to go after lyme and all the co-infections. you may be more partial to a cephalosporin esp the 3rd generation ones so maybe that's worth swapping out the doxy or zithro to try. my LLMD says that pulsing the azole's seems to be at least as effective as taking them daily.

given the broad spectrum you're on you should probably swap one thing out at a time and see how you respond. rifampin is known as a first line bartonella drug (but also has effect on babesia) so that may be a good one to try. i know something things but am no expert so please talk to your LLMD as 4 months seems too long not to be making improvements.
Posted 1/14/2016 7:07 PM (GMT 0)
How are you doing rmgarrett? ... did you back down meds ...did you up the detox?
Just read that myco could be the leading culprit in als like infections.also that diflucan can build up in your system..let it clear some? ..still rooting for you lettuce know how ya doing?

Post Edited (bluelyme) : 1/14/2016 12:11:13 PM (GMT-7)

Posted 1/14/2016 7:55 PM (GMT 0)

Rikky1 said...
you're on a tetracycline, macrolide and 2 azole's. that's a good combination to go after lyme and all the co-infections. you may be more partial to a cephalosporin esp the 3rd generation ones so maybe that's worth swapping out the doxy or zithro to try. my LLMD says that pulsing the azole's seems to be at least as effective as taking them daily.

Babesia needs an anti-malarial - so that protocol won't be effective for that.
Also, the tetracycline plus macrolide combo for treating bart...often is not effective.

Rifampin or a Fluoroquinolone - are the more effective abx for bart (but there is a black box warning for the fluoroquinolones)
Posted 1/14/2016 7:57 PM (GMT 0)
Gotta agree with Girlie. If you're going after babesia, you need an antimalarial. I thought I replied to this thread a second time but I'm not seeing it. Also--- with your ear & sleep issues I would definitely look into babesia.
Posted 1/14/2016 8:54 PM (GMT 0)
Glrlie/Sarah,

Sometimes trying different combinations clears unknown pathogens which allows you to make more progress. Also I know a few LLMD's that don't prescribe anti-malarials primarily because they haven't been effective either due to unknown infections blocking their effectiveness and/or resistance. Strange for me I was on Cefdinir/Tinidazole and it was the best combination to keep my babesia in check. There are too many unknowns with this disease to think we can whip up combinations and know what they'll best treat hence all the various approaches and experimentation.

I'd hate to limit options given the current state of our understanding of this complicated set of diseases. Just my 2!
Posted 1/14/2016 9:24 PM (GMT 0)
I'm not limiting options. Just saying that what you said--- that that covers all co-infections--- isn't true.
Posted 1/14/2016 9:33 PM (GMT 0)
From my previous post:

"Have you been on any other protocols prior to the one you're on now?

It might be time to change it.

You may have a confection that needs to be addressed first."


I don't think my suggestion is limiting options - quite the contrary - it's saying to try other options.
Maybe one that is known to target one of the main co-infections - Babs/Bart.

The LLMD's - Dr. J., Dr. H. (highly regarded) - use antimalarials for Babs.
Posted 1/14/2016 9:54 PM (GMT 0)
I agree, even though I'm not very knowledgeable about the abx protocols, it's always best to stick to the 'tried and true' protocols first, simply because they have worked for the most people. IF - and I do mean if a person has tried said protocol for at least a couple of months and has not had improvements, then it's time for something different - whether it's increasing the amount of detoxing (You would be amazed at how much this can help!!!), adding in herbs or switching up the abx being used.

Over the years that I've been active on this and other Lyme forums, I can't tell you how many people I've read about that have tried something 'unusual' first, and then fail and be much worse off. This doesn't happen to everyone, but I really don't see why we should skip over those things that work for the majority - as it works for the majority of those that need it.
Posted 1/15/2016 12:47 AM (GMT 0)
My comments were more addressing the authoritative sounding statements I've heard here like Tinidazole is effective against the 3 forms of Lyme and Rifampin is usually only used for Bartonella why would you use that for Babs? By the way mine sound that way as well so I need to check myself as well!

There is plenty of room in the middle to try things that are curtailed for a specific case and sometimes this isn't quite as clear to folks who know far less than some on this board. This is why working with an LLMD who knows your specific situation, history of symptoms, etc. etc. is so important and to go it alone can be quite the dangerous trek.
Posted 1/15/2016 12:53 AM (GMT 0)
" This is why working with an LLMD who knows your specific situation, history of symptoms, etc. etc. is so important and to go it alone can be quite the dangerous trek."

Exactly - which is why we encourage members to work with an ILADs trained LLMD/LLND whenever possible.
Posted 1/15/2016 4:34 PM (GMT 0)
YES, it does get better. I got sick in fall of 2012. I have been better since...the end of 2013. There is a lot of good advice on here. You know your body best. For me, personally I could only ever handle 2 antibiotics at a time. Even after I was better - it wasn't herxing - I just could only handle two.

Like many others have suggested on here there are other things you can do beside detoxing. Alternative protocols like herbs/supplements that can help build your body back up, while the antibiotics are killing the bugs!

Buhner is a good source for a general read and getting some advice for supplements. There are also a few good herbalist/Naturopaths that can guide you if you need more thorough approach. A lot of times LLMD's will openly discuss some helpful supplements if you open the door whereas before they might not. And it is always good for them to know everything you are taking.

Hang in there. IT DOES GET BETTER!
Posted 1/15/2016 5:49 PM (GMT 0)
Thanks everyone for the input. I have been busy at work... So I will do my best to answer any questions.
I met with my LLMD this week. She is going to switch out one of the antibiotics (sorry, forgot which one she said). I have had mycoplasma in the past, so the doxy is supposed to help with that.

As for the co-infections, nothing has come up. Although, I only had Bart testing through lab cor, so maybe I should do the test with Igenyx.

There is also a high Chlamydia pneumonia infection so I'm starting on Valtrex. Overall she is still not 100% sure what is causing the loss and strength so we are still trying to pinpoint that.

There were some other infections on my blood test (EBV) that we want to keep an eye on. So plan is to keep going on current protocol and then more blood tests in a month.
Posted 1/15/2016 6:01 PM (GMT 0)
rmgarrett, you don't necessarily have to do testing to identify the co-infections. Your LLMD should be able to clinically diagnose you. Though if you have the money, then by all means get the Igenex tests. But even Igenex has false negatives.

As, I said, can you ask your LLMD specifically about babesia? Specifically the ear and sleep symptoms. I just don't want you to miss it.
Posted 1/24/2016 4:41 AM (GMT 0)
Any luck pinpointing which infection is causing muscle loss lack of strength?. Is it nerves or actual infection in muscle? ....any who howya feeling any progress?
Posted 11/15/2017 3:45 PM (GMT 0)
This is an old thread. But, I'm wondering what happened to rmgarrett.
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