I've been treating with mepron and rifampin for babs and bart but so far nothing has changed.
I think it's been about 3 months on the mepron and over a year of treating for bart.
So far I haven't even noticed feeling worse from it, much less any improvement.
Could it be possible that I don't have these coinfections?
I don't even have that many symptoms of them, what I do have could be from lyme alone.
My LLMD wasn't really sure I had any either, as I tested negative, but was willing to treat for them.
Just wondering what the chances are. I don't want to be taking meds I don't need, not that I have much choice I guess.
Thanks
Posted by gemofnj (Member # 15551) on :
Sarah,
i totally understand your dilemma.
my LLMD felt that i did not have coinfections either.
however, you can still have them even though your tests are negative.
towards the end of my lyme treatment, i did display some minor symptoms for bartonella, (typical foot and sole pain) and after treating with Rifampin, they seemed to disappear.
i think its good that you did treat for them, but i do believe it is possible that you dont have them.
you could always stop the abx and see if your symptoms worsen.
good luck Posted by Pinelady (Member # 18524) on :
however, you can still have them even though your tests are negative.
I agree.
Posted by Sarah182 (Member # 15774) on :
How about negative tests and not really any symptoms?
I've had night sweats before and some foot pain, but that's it.
I wonder if the foot pain is just from losing so much muscle mass. It wasn't bad pain either, just annoying.
Nothing seems to make much difference in my symptoms.
I would think by now I would see a difference..don't know.
Thanks
Posted by Pinelady (Member # 18524) on :
It may be time to go back to treating lyme? I had
the soaking nite sweats and foot pain and doc said
to treat the lyme first and whatever appeared then
later. So it may be you did not have a co and just
covering the bases. I would check for morgellons also.
Posted by glm1111 (Member # 16556) on :
Have you been treated for parasites and worms? Check out the symptom list in the search bar here or on
Dr. K. treats these first before he treats anything else. I didn't start to get well until I treated these co-infections.
Gael
Posted by Bugg (Member # 8095) on :
For what it's worth, I was just having this same conversation with some other "veteran/chronic lyme patients". We all agreed that sometimes we actually mistook the severity and duration of the symptoms that lyme disease alone can cause. We, perhaps mistakenly, attributed those lingering symptoms to untreated or undertreated coinfections. It's hard to know, for sure, as the testing is so inadequate and so many things overlap.
For example, hormonal/endocrine imbalances from lyme disease alone can make some people have night sweats....Inflammation from lyme alone can cause peoples' feet and legs to throb.....This disease is so hard because so many symptoms overlap. It's truly maddening....
In my humble opinion and in the opinion of my LLMD, if I didn't have positive improvements after treating for a particular coinfection for 3-4 months, I would look elsewhere.
Keep in mind that lyme can wreak havoc with your endocrine system and immune system. It can setoff a wildfire of inflammation in your body. Once that inflammatory response occurs, it can be difficult for many to abate it.
Have you tried bicillin shots yet? If you search in the archives on this board, you'll see that some said bicillin really turned things around for them.
I wish I had the "magic" answer for you. I am sorry you're struggling. Hang in there. You will get better. It just takes time.
Posted by gemofnj (Member # 15551) on :
yes, i agree with everyone not to give up trying to find an answer.
it is understandable that if you have been treating in one direction for a reasonable amount of time without any improvement, maybe it is time to change your direction or approach.
perhaps you could discuss your concerns with your llmd.
personally, i wouldnt want to be on the same abx for a year without seeing any improvement either.
Posted by Hoosiers51 (Member # 15759) on :
Sometimes we don't all respond to the "classic" coinfection treatments.
I tested positive for babesia and bartonella henselae, and while I did herx the first time I took Mepron some, it never really helped my main symptoms much.
When I saw another LLMD, he wrote in his notes that I had had "poor response" to babesia treatment in the past.
Have you ever tried artemisinin? That helped convince me my babesia is still there, because it gave me night sweats. I wasn't having the night sweats without poking them out with the artemisinin.
Also, the Bartonella. I did Rifampin, and it did NOT help me much. Also did Cipro, and while I had some incresed irritability from it, it didn't help me much.
Strangely, the two things that have impacted my Bart the most are Bactrim DS, and Zithromax with Plaquenil (possibly).
So my point is that you could still have those infections, but those drugs just aren't really "doing it" for you. Than again, you could not have those infections. It is hard to know.
I have had some inclinations that I actually have babs and bart (like the testing), so that has helped encourage me to try different treatments when the first ones didn't work.
You might just need to try different drugs. If they aren't working for you, I would not stay on them too long.
Really the key to this illness, if you truly do have these infections, is trying abx until one or two or three of them work. Sad but true.
Posted by tick battler (Member # 21113) on :
I believe there are several different strains of bart out there and some respond to rifampin while others respond to bactrim and others respond to zith or biaxin and others respond to levaquin.
My 3 young children all tested posiitive for bart henselae, among other things.
All of their bart symptoms seemed to improve on bactrim but then one of mine started to backslide until we switched the bactrim to rifampin. In my opinion, the bactrim hit one strain and his bart symptoms resolved but then a month later they started again (probably from a different strain), even though he was still on bactrim!!!
I would definitely try a different bart med if you are still having bart symptoms.
tickbattler
Posted by Sarah182 (Member # 15774) on :
The thing is, is that I'm not sure I am having bart symptoms or babs symptoms.
Kind of hard to tell if they go away when I don't have any to go away..if that makes sense.
My main issues are cognitive and weakness.
Sleepings not great and can't gain weight.
I was on levaquin before, and bactrim, also was on malarone about half a year ago.
I think I've tried just about everything.
I just keep waiting for something to make the whole picture improve..mostly the cognitive stuff.
Posted by Sammi (Member # 110) on :
Hi Sarah. Night sweats and weakness can be from Babesiosis.
It is my understanding that Mepron needs to be taken with Biaxin, Zithromax, or Ketek to work effectively. Maybe you can speak with your doctor about switching to one of those antibiotics.
Do you eat something fatty each time you take Mepron? This is important.
How many teaspoons of Mepron are you taking? Maybe it could be increased. Maybe you could also add in Artemisinin if you have not taken it.
Posted by Hoosiers51 (Member # 15759) on :
I believe that Bart and babesia can also just cause general weakness, fatigue, not feeling well, and not the classic symptoms.
Did you test positive for Lyme? Lyme can cause those things too of course. Then there are the other factors like mycoplasma.
Cognitive issues could be a lot of things. Lyme, one of the co's (even in the absence of the other symptoms like night sweats or foot pain), mycoplasma, poor blood circulation, or dysautonomias like POTS.
I would look into boosting your immune system (still with abx of course) if you aren't getting many fireworks (big herxing or improvement) on the abx. I really like Low Dose Naltrexone for boosting the immune system, personally (www.lowdosenaltrexone.org for explanation.
Hormones are another thing to look into. Some of the hormonal issues can cause weight loss, like Cushing's I think it is. Or maybe that's Addison's. But just testing cortisol isn't always enough....you may need to do an ACTH stimulation test as well.
Posted by wtl (Member # 19883) on :
Hi Sarah,
I am not sure anyone has already mentioned this or not - co-infection test so far is not as accurate as one would like to think so a positive or negative might not mean as much. If you llmd thinks your symptoms indicate you have co-infection, chances are you do.
Logically if one has Lyme for a long time, his/her immune system might be shut, and some other infection occuring is a reasonable assumption. I would imagine most have some kind of co-infection. Just that finding the right strain of infection can be a challenge.
Hang in there.
Posted by Sarah182 (Member # 15774) on :
Thanks everyone! Hoosiers...I know I have hypercoagulation..taking heparin for that. Seems to help a little but not much.
I did test positive for lyme through Igenex. Not CDC though.
Can you get the LDN without a script from your doctor?
Had my hormones checked multiple times and had all the tests associated with them..all normal of course.
Like most of us I've been checked up and down many times..everything checks out to be okay.
Sammy- I'm on Zith with the other meds and I do eat fats when I take it. I'm only at 2 tsp a day..my LLMD wants to keep it that way. Plus I get toxic very fast so not sure what to do there. I was taking art with it too, just ran out. But I'm still wondering if I have it or not..
Could night sweats be from lyme alone? I haven't had them for the whole time I've been sick. I was thinking maybe my body is trying to rid itself of all the toxins in it too..maybe they come out in night sweats.
I wouldn't even be asking if my LLMD sounded like he was sure I had the coinfections. He's treating as a precaution.
Do most people with coinfections have most of the symptoms? How does everyone know?
![[Smile]](smile.gif)