Topic: Test for Co-Infections, Even when Symptoms Don't Seem to Fit.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Someone please hit me over the head.
For almost a year I've been aggressively treating neuroborreliosis. Lymebrain. Raging headaches. Brain lesions. Pain in forearms, memory loss, can barely hold a thought long enough to get out a post-it pad to write it down.
When my LLMD and I first met and discussed my symptoms, I really didn't seem to have any co-infection symptoms. Night sweats? Forget it! I am perpetually freaking freezing! I wear socks to bed! I am never warm until it's about 100 degrees outside. I considered the cost of coinfection testing, of which my insurance pays approximately $1.95, and said, "Naw, we know I'm CDC positive for Lyme, let's just treat it and I'm sure I'll be better right away."
Well, that was a year ago.
Things started downhill a few months ago.
I could hardly function at work. But for my kind boss and coworkers I wouldn't even have a job.
So I says to my doctor last month, "We have GOT to figger out what's going on with my brain. SOMETHING bad is happening to my brain. Let's do another MRI. Let's do that test for babesia. Let's test for mycoplasma. Let's PLEASE get me better or I am not going to be able to fake it at work much longer, not that I'm fooling anyone now."
So the MRI said, "Looks exactly like last year. Brain lesions stable (11). Possibly due to infectious process such as lyme, vasculitis, or demylinating process. Unchanged in size or diffuse pattern."
But the sweetheart in my LLMD's office called yesterday and said "Your Babesia WA-1 was positive." And she mentioned something about the doctor kicking himself.
I told her to please remind the doctor that it was ME who talked him out of it due to expense and the certainty that I didn't have any of that based on lack of what I thought were the symptoms.
Moral of the story (if you've made it this far without falling unconscious): you might not fit into a classic set of symptoms for lyme OR a coinfection. It's still a really good idea to be tested. In my case, I've spent a year fighting neuroborreliosis when I might be well had I known I also had babesia. I only have myself to blame.
The good news: Now I know. Now I'm planning on being much, much better right away. I'm planning on my mind-numbing headaches ending for the first time in years!!! Hooray!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Informative post. I agree 100%. Co-infection testing and treatment is critical if you want to get 100% better. Very few people only get lyme.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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I'm sorry to hear that you are slipping. I wish I could understand how you could get well then really fall apart again..
If you always had babs, why did you recover???
My tests for all coinfections came back negative but because I distrust the tests I think I should be treated anyway over the course of the next year.
Don't know if my llmd would agree. She said I could feel confident about the tests for babs, bart and erlich, but lyme was the iffy one.
I have been able to keep my horrible headaches at bay. Although, I have days when I feel it is right there sniffing at the back door ready to kill.
It is a terrifying feeling when your brain is screwed up. I was talking to my mother yesterday and could feel my brain slipping away in mid conversation. I just sat there staring at her with my eyes crossing.
It is so scary but with time and patience and the right treatment we will be well again.
What is you llmd going to put you on now? Hang in
-------------------- We are spiritual beings on a human journey...
riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Sometimes coinfections won't even show up on testing until you have treated the top layer of infection. These bugs seem to take turns, and when one gets beaten back, unother, untreated one can step forward to cause symptoms.
I was treated for two and a half years before I ever tested positive for Bartonella. It wasn't for lack of trying, it just never showed positive.
So, yes, test, but also, keep testing, or just treat if you still have symptoms. Especially if you got better, but then go downhill again. The process of immune suppression is stil not understood, and these infections are tricky.
Glad you have found what your next step is, Michelle.
Sounds like a break through Michele and that's great news!! Wow, one year of treatment and lesions are the same...have to thank God they didn't grow!! I hope this diagnosis helps with your roadblock!
Tell us, are you seropositive for lyme too? Did you stop abx for coinfection testing and did your symptoms flare when/if you stopped. Obviously, I'm particularly interested in your exerience with our similar brains (only two lesions and a few thousand miles apart).
I am afraid to stop abx, so I haven't done much testing. The drugs seem to keep the disease at bay/tolerable. I'm seronegative for lyme. Figure I'll be seronegative for anything else. My doc doesn't have much faith in testing.
I also havn't pushed testing because I've been diagnosed lyme clinically and continue to receive treatment and I've improved to this functional tolerance. I don't miss those days of mass confusion last summer, but it would be killer to be better and off abx.
I get overheated for no reason and sometimes loose my breath without reason either which are reported co-infection symptoms, but there are so many symptoms and so many issues. My headaches are under control but my cranial nerves are symptomatic. Its hard to know which end is up.
Good luck with Babesia treatment!
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
A kind thank you to all!
My dear Human, my idea of 'recovered' really was that I went without bad headaches once for about six weeks after doing a grueling round of Flagyl last November. I thereafter with great excitement pronounced myself 'cured.' I requested to be let off antibiotics. My LLMD's office of course chuckled to themselves. In January, it all began again.
I guess I made a good dent in the Bb in my brain but haven't done anything for the babesia. But I'm FIXIN' to.
My LLMD had told me last visit he intended to treat me for babesia regardless of tests. However, I wanted to do the test.
I am starting Mepron/Zith today.
Riversinger, thanks for the suggestion of repeat testing. I admit having "scrolled on by" a lot of babesia posts thinking it didn't apply. Going to start paying attention!
Yorktown, good to hear from you!! My lesion twin! Yup, I call it good news they haven't gotten worse. I'm always trying to figger a way to construe things as good news, so the positive WA-1 test is good news, too. Now I know 'zactly the nature of another critter in my brain.
I did not stop antibiotics to test, and am currently taking Biaxin XL 1000mg and Amoxy/Probenecid 3000 mg daily. I think babesia doesn't give a fig how many antibiotics you're on.
I have IGM 23-25++, 28+, 31+++, 41+, 58+, 66+, and IGG 18+/-, 30+/-, 39+/-, 45+/-, and 93+/-.
Many who are seronegative convert after beginning treatment to seropositive. You might be very surprised by a repeat test. Also, as you know, sometimes the very sickest Lyme patients are the ones whose bodies are too worn out to produce any antibodies any longer.
Glad your head is feeling better. I'm counting on better head days again soon too!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hey Michelle~ Glad you found that Babesia!! I think I'll be addressing that one in a couple of weeks. I have not tested positive for it, but I know the tests are worse for co-infections than for lyme, so it means little. But, that aside, I will be tested again for it...and most likely treated for it no matter what the test says.
I, like you, tend to be cold...most all the time. And in October, when I was beginning to feel better lyme wise, I had the chills several times for NO good reason (other than a possible co infection).
I've thought along the same lines as riversinger....you begin to improve from one bug, and the other rears its ugly head.
At any rate, I think I'll be attacking it soon. My LLMD said he can treat it even though I'm still wrestling with some C. diff stuff...
What will you be using for treatment? Let me know....I think I'll be following after you! Good, good luck to you!! My llmd mentioned something about Malarone for me....
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Oh oh oh oh my goodness! I guess I can't say told ya so coz I was keeping that thought to myself--but I knew IT. I kept thinking...there is NO way that woman doesnt have at LEAST one coinfection. It is just not possible.
And now we can be MEPRON BUDDIES TOGETHER!
I am RE-treating. for the third time. gonna start the mepron/zith in about a week. ramping up on the CSM right now.
I dont have Wa-1...I was bitten in PA.
Does he have you on Artemisinin? If not, get him to give it to ya....it is needed. Adding the Art this time will be new for me.
I run low grade fevers, but mostly FEEL like I am freezing all the time. No night sweats for me, but cold clammy hands. and hot hot face. not looks, just that my face feels hot to me.
I am very excited about your inevitable SUCCESS STORY to be printed at Lymenet soon!
Ps--what other coinfections are you gonna treat? what others came back positive?
Take care mepron buddy, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
How about being treated for three + years for Lyme before finding out about a co infection
I was tested for Babs several times. But so many symptoms overlap Lyme who could tell what was what?
Anyway, all Babs tests, even FISH's, always negative. And my Lyme friendly doc didn't want to treat for Babs without positive results.
My insurance wouldn't have paid for the meds anyway without a positive.
Then, finally, got tested for WA-1. Bingo!
I dropped off my scripts with the pharmacy today for mepron/zith. So, as soon as they are filled, I guess I'll be joining the MBC (mepron buddies club).
Kind of anxious about it. Don't know what to expect from that mepron.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hey Timaca! I hope you are beating down that c. diff. While not a co-infection, I know that is a nasty and persistent mo-fo to beat down. I'm going on Mepron/Zith and in one week, the doc is adding artemisinin (I probably misspelled that).
Trails, it will be cool to be your Mepron buddy! I'm expecting to see a lot of progress soon -- especially in the headache department.
Tabbytamer, THREE YEARS!! My goodness! I didn't do all the babs tests, just the WA-1, since I live in California and haven't travelled anywhere else. So my babesia testing only cost $60 for the Sonoma County WA-1 test (which is run through IGeneX but actually done at the Sonoma County Health Department). I figgered it was the cheapest and seemed the most likely. Since you live in California, I'm surprised your doc didn't do the WA-1.
Good luck to all now and future Mepron buddies -- gonna look up that thread ASAP!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Michelle,
My WA-1 was also run through IGeneX/Sonoma Cty just back in March.
I'm a native Californian. Got infected here in San Diego 1988. Don't know why I wasn't checked earlier for WA-1. I did have some Babs FISHs done, maybe the docs felt abnormalities from any type Babs would have shown up on the slide?
But you figure with the FISH they're just looking at a drop or two of blood--I would think chances of seeing anything would be slim.
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Yup, I call it good news they haven't gotten worse. I'm always trying to figger a way to construe things as good news, so the positive WA-1 test is good news, too. Now I know 'zactly the nature of another critter in my brain. 
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