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When do you start feeling better on abx?

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Posted 6/4/2015 2:49 AM (GMT 0)
Hi-

I'm feeling a bit discouraged tonight as my lyme symptoms continue to wax and wane throughout my abx treatment, and not really feeling better. I'm into my third month of treatment and just switched abx. I suspect I'm feeling down due to a new herx on this 2nd antibiotic, but to be honest...I'm just sick and tired of being sick and tired.

I think maybe I'm not detoxing enough and experiencing too much inflammation from the abx. I have lots of joint pain, head pressure, nerve pain and achy flu-like symptoms that hit me at 2 pm every day. So far I've been dry brushing, lemon water, clean diet, good probiotics, and epsom salt baths about 3x a week. Do I need to do more?

At what point did any of you start really feeling better on abx? Did you notice certain symptoms slowly start fading away w/ time? Did any of you feel better after you stopped taking the abx?

Need some words of encouragement. Thanks.
Posted 6/4/2015 4:48 AM (GMT 0)
Hi Sniogra,
Sorry you're having a rough time!

My symptoms usually ramp up late afternoon, early evening every day...and it does get difficult determining whether I'm getting better.

Regarding detox - when I was at my worst, i would have an epsom salt bath just about daily...so if you can add a couple more a week in, try that.
Are you adding hydrogen peroxide into the baths?

Are you taking milk thistle? - It is for the liver, and for effective detoxing, the liver must be healthy.
But, if you have a ragweed allergy, you will probably not be able to take the milk thistle.

The one thing that has helped me is Nutramedix Pinella - brain and nerve cleanse. I ordered it from iHerb. Another one from Nutramedix that many people use is Burbur. You can take both of them together.

For me, I have had some symptom improvement, but it was slow...and little increments. It's difficult because my worst symptoms aren't better, so they overshadow everything. Even though I have lost a few symptoms, I still feel pretty bad because the awful ones are hanging on.

Many people don't feel symptom improvement for a few months...I have even heard 6 months for some people.

Sometimes, if you have an unaddressed co-infection, that needs to be addressed before you will feel better.

You're still early in the game...hang in there...keep asking questions, we know how difficult it is.

I'm at 11 months into treatment (currently on an antibiotic break), and I still have days where I'm a mess...
Posted 6/4/2015 6:46 AM (GMT 0)
Sniogra

I'm really sorry you're struggling. I and many others here have experienced the same and it can be very difficult trying to figure out what is going wrong and what to do about it.

I can't add much to Girlie's response other than to share that I was on herbs for 6 months before my LLMD put me on abx. And it was the herbs that created unbelievable debilitating joint pain, which got so bad I could barely walk. With abx, joint pain subsided over time, but what I call neuropsycho problems started w/ the abx… I had emotional breakdown after breakdown after breakdown for two wks straight with anxiety and panic attacks in-between. It was terrifying but finally calmed down. Also, heart problems started the 2nd month, so I stayed on the abx but stopped all herbs.

Now, 6 months into abx, I continue to have bad muscle pain, and now I have new sx, tinnitus, bell's palsy of the face, and I continue to have cognitive problems. So much so that I couldn't stay on my protocol so I discontinued ALL my herbs and cut abx dose in 1/2, and now trying to increase detox. It is HELPING! I haven't felt this sane in 2 yrs. I am finally getting things done and getting my life back on track. Will slowly step back into my tx in a few wks… hope it goes better this time.

Everyone's tx and experience is different, but 3 months is still early in your tx and your'e still climbing up that hill. You're smart to increase detox, do it slowly so you don't startle or clog your system. Add in the herbs Girlie mentioned… and stay focused. I would give these changes 3 or 4 wks and if you're still not seeing any change, you might need to lessen the tx a bit. Some people just need to go slower.

And be sure to talk w/ your LLMD about your concerns and any changes you want to make… and keep posting questions if you have any.

Hope you can get some relief… Stay focused…

p
Posted 6/4/2015 1:27 PM (GMT 0)
Sniogra -- I understand how you feel. I treated only Lyme for about 7 months, and didn't make any improvement (except that I was finally able to gain some of the weight back that I lost). My LLMD then diagnosed me with Bartonella and I believe all along most of my symptom are caused by Bart (which also explains why just Lyme treatment alone wasn't helping me).

I started treating Bartonella 3 months ago (first month and a half was gradual, then we increased). It's really hard to tell what's going on because honestly I only focus on the symptoms I still have, so I feel I'm not getting better. However, there have been some subtle improvements that only came once we started Bart treatment (much less muscle twitching & less numbness and inner-vibrations). BUT, some of my other major symptoms haven't changed yet at all, so it definitely feels discouraging.

My LLMD always reminds me that it takes time, everyone is different and these diseases are very tricky and good at persisting...but that eventually, it will get better.

Much easier to say than to really believe and relax :)
Posted 6/4/2015 1:42 PM (GMT 0)
I'm in your boat as well. Started treatment April 1st after 4-5 months of immune system and diet support. Haven't really noticed much of a difference--probably have a little better energy but also have some terrible brain fog days and don't think any other symptoms have subsided except the numbness and tingling.

It does sound like you can ramp up detox a bit more. I'm going all-in with detox and I really notice it when I skip parts of my protocol (I have LOTS of gene mutations so that is probably part of the problem). You might want to consider adding green tea (an easy one if you can stand the taste, and there are lots of decent flavors out there--my LLMD recommended I drink 4 cups a day), doing infrared sauna (expensive but sure makes me feel better), and coffee enemas (also very helpful I always feel better for at least a few hours after an enema).

Good luck and godspeed we are all in this together!
Posted 6/4/2015 3:55 PM (GMT 0)
Thank you all for the kind and supportive words. Knowing others are going through the same thing is very reassuring and gives me some encouragement...believe me, I need it!

Runnergirl- most of my main symptoms are muscle twitches and numbness...which have yet to get better or go away. Are those symptoms indicative of Bartonella? How did you get the bart diagnosis? I'm only getting treated for Lyme and myco right now.

All the detox tips are extremely helpful, and I think I'll try out those coffee enemas everyone is talking about. Can you do those daily?

I often wonder if going the abx route is doing more harm than good as some symptoms have gotten worse since treatment, but others have subsided. I've also gained weight back, and the muscle wasting has improved. Before treatment it felt like I was getting "eaten alive" (from the inside). That feeling has gone away, so I feel the abx have been doing something good. I'm thinking of going the herbal route next but it is hard to decide what will work best for my body and it seems everyone has such mixed results w/ both routes.

Thank you all again for the help and info!
Posted 6/4/2015 4:59 PM (GMT 0)
Sniogra -- I'm not the best at saying which symptoms are from which infection. I tested positive for Lyme and my LLMD diagnosed me with Bart based on my symptoms. He said I had many significant symptoms of Bart. I don't think muscle twitching is ALWAYS Bartonella, but it can be. For me personally I'm pretty sure that's what it was caused by. Because during 7 months of treating Lyme (and also trying to reduce twitching with magnesium incase of just a magnesium deficiency), nothing touched the twitching at all.

Then, once I started targeting Bartonella, there has been a crazy reduction in my twitching. I used to twitch constantly all day long all over my body, it never stopped!!! This lasted for 1.5 years, daily. Now I still have some twitching but it is significantly less. But, I still have some of my other very troubling symptoms that have no improved at all yet. Not sure what to think.

I guess some symptoms can take much longer to go away and there's really no rhyme or reason as to what improves quickly and what doesn't. I definitely drive myself crazy trying to figure it out!!! So if anybody has the answer to that, I'd love to hear :)
Posted 6/4/2015 5:31 PM (GMT 0)
I found this link to be helpful. We are so relieved to get a diagnosis, believing that means we are now on the road to feeling better and recovery. While that is true it is a long road and we often feel worse before we feel better.

http://www.lyme-symptoms.com/LymeDiseaseInfo/EradicationProcess.html

Start at "You have chosen an Eradication agent"

Just an FYI you shouldn't use charcoal if you are on abx
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