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Posted 5/12/2014 2:34 PM (GMT 0)
I am hoping that the end of the tunnel is near for me. I want to share my success thus far with all of you to give you some hope! At this moment, I feel awesome. Don't have any symptoms. I have days where I still have some twitches and tingling, and days like yesterday and today where I am completely symptom free. I started treatment February 8th - doxycycline along with other herbs and nutritionals. Then just last month my LLMD added Zithromax to the mix. I was extremely nervous about being on two antibiotics, but it kicked out few more issues that I had in only 4 weeks. The Zithromax brought my temperature down to normal (for months it was 99.5 or so), it took away the foot pain, took away my rib pain, and took away the overall stiffness and bodyaches I was having. And so all that is now left is slight tingling on my left side on occasion, and twitches. THAT IS IT!! Although all of my tests for coinfections came out negative, my LLMD strongly believes I have bartonella. And so that is why she put me on Zithromax, and just this past week took me off the doxy and switched me to Bactrim. I had to switch anyway bc I was having horrible peripheral neuropathy and skin issues due to the doxy and the sun. I wanted to switch to amoxil, but she believed Bactrim was a better choice. I am confident that she is right. I seriously hope that the next time I see her, that I will be able to count two months from that point to stopping antibiotics!! Fingers crossed!!! :-)
Posted 5/12/2014 2:45 PM (GMT 0)
Bactrim is a good choice. It also hits Babs
Posted 5/12/2014 2:47 PM (GMT 0)
Yes, she is following Dr Horowitz' protocol, except she is excluding the plaquenil bc she hasn't had much success with it.
Posted 5/12/2014 2:59 PM (GMT 0)
Great to hear that you're doing so well with your healing. keep it up!
Posted 5/12/2014 3:06 PM (GMT 0)
It's so good to hear success stories.
Good for you!
Posted 5/12/2014 3:06 PM (GMT 0)
Hi Chapelle so happy you are making even better progress with your treatment! I think your herbal use of teasel and GSE proves the diesease can be treated without the harsher cyst busters of flagyl or tinidazole.

Bactrim worked really really well for my bartonella symptoms and has held them off completely. For me it is prescribed as Septra DS though. It is also very well tolerated, I think you will have good success with it.

So no Plaquenil hey? I have had great success with it. Dr. H says it modulates the immune system, amplifies other intracellular antibiotics, reduces inflammation, and blocks the lyme DNA gyrase enzyme. Apparently also a mild cyst buster and dissolves cysts but I think it works it's action by impairing certain bacterial enzymes.

I am still sitting at 99% well lol. It's like I plateuaued at 99% recovery. I still got no symptoms, but the ONLY symptom I get is a very mild vibration/humming/buzzing sensation which happens only occasionally when I'm laying in bed. Do you get this symptom? I believe it is Lyme still in my brain...
Posted 5/12/2014 3:11 PM (GMT 0)
Terrific news! So happy for you! :)
Posted 5/12/2014 3:17 PM (GMT 0)
Congratulations, Chapelle! yeah What wonderful news! Sounds like your LLMD made all the right treatment choices for you!

Like you said, hopefully on your next appt, you will be on the 2 month countdown!! :-)
Posted 5/12/2014 3:26 PM (GMT 0)
Yeah!!! So happy for you!!!
Posted 5/12/2014 3:50 PM (GMT 0)
Chapelle
Such good news!!!!!
Keep us posted....
Posted 5/12/2014 4:39 PM (GMT 0)
That's great that you responded so well to the treatments! I hope you're just about done with Lyme!!
Posted 5/12/2014 5:49 PM (GMT 0)
That's fricking awesome!!!!!!!!!!!!!!!!!!! Yayyyyyyy! 😊
Posted 5/12/2014 5:57 PM (GMT 0)
LymePickle - re: buzzing/vibration - that was one of my initial symptoms and one of my worst - I get it minimum four hours up to all day...definitely feels like my nervous system is malfunctioning.
Posted 5/12/2014 6:27 PM (GMT 0)
Hey Girlie. Ya that buzzing is annoying! It was way worse months ago and was definitely much higher in intensity and frequency but now it at least it doesn't happen so much, just every few days. But it sucks becase I have like 3 symptom free days and then I am laying in my bed on my side and I can hear the "lyme vibrations" and I'm like oh great now I'm back to 0 symptom free days. To me this counts as a symptom because I know it's Lyme in the brain. I think they are moving around on some of the nerves, drilling into them, or shooting off blebs. I don't really know what they are doing, but they are still a few of them left in my brain.
Posted 5/12/2014 6:48 PM (GMT 0)
Thank you all so much for your positive responses!

Lymepickle - no I don't have any of those sensations, thank goodness. I actually don't think the lyme ever hit my brain - I think when I had the anxiety and the insomnia it was more the lyme playing around with my hormones, to tell you the truth. Bc I never had brain fog or cognitive issues or the sort.

question - is the buzzing like a ringing? is it in your head?? bc Bactrim ds and septra ds can cause ototoxicity. Just wondering.

And just to also tell you - Bactrim DS and Septra DS are just two different brand names to the same drug. They don't even actually exist anymore. If you look at your prescription bottle, it will probably say SMZ/TMP DS somewhere - which is the generic form for both brands (sulfamethoxazole trimethoprim DS) - so we are both taking the same stuff!! =)
Posted 5/12/2014 6:53 PM (GMT 0)
This is awesome!

Thank-you for sharing a positive story.

I believe Bactrim is what got me the furthest so far in my own treatment.
Posted 5/12/2014 11:16 PM (GMT 0)
That's wonderful Chapelle!!! I hope to you get the two months to go next time!
Your kids are basically symptom free too, right? Good news to be happy about and inspire!
Posted 5/12/2014 11:53 PM (GMT 0)
Great news!!! VERY VERY happy for you! COme on two month mark!
Posted 5/12/2014 11:58 PM (GMT 0)
Stacestar - thank you! Yes, my two youngest are 100% - they have 3 weeks of antibiotics left and they are done!! I was planning to post that as a separate thread - we are still trying to figure out my oldest. Waiting on Igenex test, but started her on doxy just incase (Bc I don't want her on doxy over the summer!). I will surely post an update.

gingeranne and binduspire- thanks!
Posted 5/13/2014 2:08 AM (GMT 0)
Awesome news! We need to hear the good stuff instead of the bad. I pray you all never get it again.
Posted 5/13/2014 2:52 AM (GMT 0)
Garden peace - yes I hope I'm just about done with lyme too but in a medical sense. I am never letting this go. Some people want to move on and never look back but I will always look back. I plan to get involved and as a pharmacist somehow thru my profession help people suffering with this god aweful disease!! It has become my mission which is why I like posting on the forum so much. My facebook profile picture is of me wearing a green tshirt that says Lyme Warrior!!! Hopefully soon enuf I will b able to get the shirt that says Lyme survivor!!
Posted 5/13/2014 3:21 AM (GMT 0)
Hey Chapelle- lucky you no neurolyme!

No the buzzing/vibration is not a ringing. I also had the tinnitus many months ago which gradually became less and less to not at all. Last time I got tinnitus was over 3 weeks ago and even then very mild. So no longer a symptom for me anymore. That was Lyme affecting my auditory nerves, I think it was either huge die off or toxin release.

It's really hard to describe I've never felt anything like it before Lyme and other people on this forum can also relate. It actually feels like something is vibrating or pulsing inside of the brain. Sometimes it cycles very fast around 10-15 vibrations or cycles per second. I really think it is them spiralling around along the nerves or trying to drill inside of them. Anyways it was more intense a few months back now when it happens I can barely notice it at all. So at least the abx are working for my brain infection!

Oh about the Septra Bactrim thing... Ya I know it's the same drug but to me calling it Septra is so much easier than the big long chemical name I can not remember! Lol, I know it's actually 2 drugs in one that work synergistically for the same cause by blocking folate synthesis in bacteria.

I think to be honest... The only bacteria I have a lot left is mycoplasma! It is just a feeling of general body discomfort, a little fatigue. The Lyme just knocked out my immune system and let the mycoplasma get out of hand and spread throughout my body.
Posted 5/13/2014 3:56 AM (GMT 0)
Great great news Chapelle !!

Love to hear the success stories !
Posted 5/13/2014 10:27 AM (GMT 0)
Lymepickle - I am so sorry you are having to deal with this! I can't imagine how annoying it must be.

I will keep rooting for your recovery - hopefully the end is in sight for you too!!!!
Posted 5/13/2014 2:31 PM (GMT 0)
Chapelle - Yes I hope I'm closer to the end too! Lyme is mostly done being treated, maybe 2-4 months more treatment required maximum. I am virtually symptom free, I was 2 days off tinidazole now I'm back on my on day and I didn't have those minor vibrations this morning so that symptom may have cleared.

BUT... And here is the next BIG issue I have. Mycoplasma!!! I just got the Buhner book healing Lyme Disease Coinfections for Mycoplasma and Bartonella which is pretty fitting for me because those are the 2 coinfections I have. And I'm starting to realize the remaining symptoms I have are mycoplasma symptoms! That is just a general feeling of feeling ill and fatigued all over the body. To me it's not as bad as Lyme or Bartonella, and most healthy people are able to have their immune system keep it from getting any symptoms. But I think because of my immune system crash from Lyme, it allowed the mycoplasma to spread throughout my body. And when that happens it's a stubborn infection! Anyways... I realize the path to health and a full recovery might be a bit longer than I first thought.
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