I am feeling close to well again and don't want to blow it by being too optimistic.
I am going to a LLND in three weeks which should help. I guess I need a CD 57 test to check on the borellia. I have not had borellia flares for almost two years but my CD57 was in the 50's last year.
My babesia duncani symptoms are nearly gone. My primary lingering symptoms are lack of stamina, dry eyes (but not like before) and occasional headaches or tingling in legs. I was up and down with Mepron for 6 months and then switched to malarone/zithro. I did 6 rounds of Coartem 2-3 weeks apart with malarone in between. That made a big difference.
LDN seems to be helping too. I have cut the malarone back from 3 pills twice a day to 2 pills twice a day. Right now that is all I am taking besides the LDN because I developed an allergy to zithro and the Bactrim DS was giving me insomnia.
I know I should wait 2 months past the time of no symptoms before quitting abx but to be honest I don't remember what it is like to have no symptoms. This feels normal to me. In fact it feels a very good normal.
Should I be very alert to little things like the tingling, a muscle twitch or a headache? Should I be able to run before thinking babesia is gone? It has been such a long time - over 5 years of being really sick.
Posted by Marcie (Member # 10070) on :
Have you treated for cyst form of lyme? Some llmd will treat with high doses of flagyl to see if any symptoms come back. Just curious, how reliable do you think the cd-57 test is? I am not sure I trust it.
Posted by James1979 (Member # 31926) on :
Someone told me today that some LLMDs suggest that you stay on abx for 4 months after the symptoms end, not just 2. They said that because a lot of people were relapsing after going 2 months past no symptoms.
I'm in the same situation as you are, and I'm also afraid to stop.
Posted by Lymetoo (Member # 743) on :
I did a "flagyl challenge" before stopping abx. I took high doses over a period of a few weeks. Since I did not herx, I was good to go!!
Congratulations on getting to this point! Posted by lyme in Putnam (Member # 11561) on :
After what I did too soon and never recovered, I'd never go off. If I knew what I know now.
Posted by bcb1200 (Member # 25745) on :
Neff...glad to hear you are getting better. I may have to try your Coartem pulse in between my Malarone.
Can you provide details on what you did? How many days did you stop Malarone before starting Coartem? How long after Coartem before restarting Malarone? ANy liver issues?
Regarding your remaining symptoms...sound like BArt to me. You mention you did one month of Bactrim DS previously..not enough. Have you tried Rifampin?
Posted by canefan17 (Member # 22149) on :
Before you start
Posted by nefferdun (Member # 20157) on :
I am wondering if bart might be slowly emerging. Last night I had to go to the bathroom every 1-2 hours! That was one of my symptoms before.
My kidney function has been slightly off for a year and now I wake up with swollen eyes. That is another reason I am trying to cut back on drugs a little bit. So needing to go to the bathroom might be that or it could be bart.
I was given seroquil for sleep and although I only take one quarter of a tablet, which is about 6 mg, I think I am addicted to it. Last night I did not take it and my sleep was terrible. Not being able to sleep is another indication of bart.
Even though I am very tired it is hard to fall asleep and stay asleep. However Malarone can cause insomnia so who knows what is causing what. The LLMD gave me the seroquel expecting me to have insomnia and extreme anxiety when I started treatment. So confusing.
I took bactrim for almost a year, had three months of Rifampin and 5 weeks of Levaquin. Not new to treating bart. I pulsed tindamax for awhile for cysts. I also took grapefruit seed extract for about two years.
I think it would be a good idea to use a cyst drug like tindamas (I tolerate it better) to see what comes out. And to also take primapuine/chloraqine for the babesia lurking in the liver. But this depends of course on whether my kidneys are ok. Need to get another test.
The trouble with the LLND I am seeing is that I was told (after making the appointment) that she does not treat without a positive test. I tested negative for bart h. (but was not given the quintana test).
I also tested positive for ehrlichia so a few more rounds of doxy and rifampin would be a very good idea. I think the irritated eyes might be ehrlichia because vets diagnose dogs with that symptom.
I hope I can hold out.
bcb, when I pulsed Coartem, at first I skipped a couple of days of malarone before and after. While I was on zithro, I did not take it 4 days before and after because if can interact.
But Malarone does not interact; it is just recommended not to take two anitmalarial drugs at once. So after the first two rounds I took the malarone the day before and the day after so I was not taking in breaks.
Posted by Marcie (Member # 10070) on :
I would be careful seeing someone that only treats with a positive test. I have only tested positive for lyme and I know I have babesia. If I went to someone like that I would never get better!
Posted by nefferdun (Member # 20157) on :
Yeah, it worries me too. The last doctor did the same thing. Luckily I was positive for Babesia D and that was what I needed to treat most. I think they are worried about being pursued by the government.
I am taking a drug vacation for a few days. I can't sleep well and am burned out - exhausted.
Posted by Nicole_Denise (Member # 20620) on :
I went off antibiotics after 2 months of where I thought "normal" was, but like you I didn't really know what normal meant. I still had some pain and fatigue, but I didn't (and still don't) know what "normal" was for me, so I decided the fatigue was normal and the pain had "normal" causes.
2 or 2.5 months after I stopped antibiotics, I started feeling worse again. I'm holding out on a wait and see until October, because I originally thought it could be yeast, but I am now fairly sure it is Lyme coming back.
Interesting that doctors found lots of people relapse if they quit after only 2 months of no symptoms. I didn't know that.
I also know that I think I was trying to subconsciously convince myself I was back to normal when I wasn't. I was sick of antibiotics and just wanted to be "normal" for real. But I think it backfired.
Posted by rainbowriver (Member # 24772) on :
My doctor asked to quit abx while I was only 80%. I had monthly flare ups and pretty symptoms. He said that my body needs to heal. Automimmune is out of whack. He has been treating lyme for 20 years. He said that I would be getting better every month, which I did. Summer was great. Now cold weather, I have major flare ups now. wondering what it is? autoimmune or lyme/bart coming back?
Posted by sutherngrl (Member # 16270) on :
Rainbowriver, my doc says if its an autoimmune reaction then you need to be treated with plaquenil for about 6 months. If you gradually get worse then its not autoimmune, it is indeed the lyme.
Posted by scorpiogirl (Member # 31907) on :
Yep my LLMD said 4 months symptoms free. She said she saw too many people relapsing when they stop at the 2 months mark. I remember arguing with her thinking that's an awfully LONG time to stay on meds when you feel well. But that's why she's the expert and I'm not.
Posted by nefferdun (Member # 20157) on :
Nicole, I think that is exactly where I am - "trying to subconsciously convince myself I am back to normal". - and not even knowing what normal is.
I hope I can get adjusted to LDN and this sleep issue goes away. I hope it will help me get into remission. I will be so disappointed if it doesn't work because I am also hoping it puts my son's type one diabetes into remission, at least with no more beta cell destruction. I am just so full of hope.
Posted by lymeboy (Member # 24769) on :
what a great question. I also wonder how I will ever tell when I am symptom free, seeing as how I can't recall what it feels like. Whenever that is, I am going to INSIST on staying on meds for 5-6 months more.
Posted by Kudzuslipper (Member # 31915) on :
This is a great thread. I am only 5 months in,but already wonder when it will end.
Nefferdun, Congrats for getting this far and sticking with it for 5 years,
Posted by gambler (Member # 8441) on :
My doctor was shocked that I wanted to stop, he seemed to think I probably always had to be on abx. Which never occurred to me.
I stopped, he was right.
Posted by nefferdun (Member # 20157) on :
So much for my drug free vacation. It lasted one day. This morning I was having a hot flash with sweats and tingling through one side of my body. I even felt a little spaced.
Not going back there! So started the malarone right away at 3 pills, not two, and everything is "normal" again.
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