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Question about co-infections & testing

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Posted 5/9/2017 10:35 AM (GMT -5)
Hi all,

I would like to get my co-infections tested (only tested on Lyme so far which was positive) but I am not yet seeing a LLMD (will do in the future, but waiting time can be long). Therefore, I am already planning on testing for these co-infections at a good lab in Germany.

My question is: is it worth testing for all co-infections (given my symptoms) or can I exclude some of them?

Main symptoms are:

- Visual distortions (afterimages, double vision, visual snow, light sensitivity, inability to filter out all my eye floaters,...)
- Tingling feeling across my body
- Sometimes random pain in my knees or muscles or other parts of my body
- Frequently a sore throat
- Muscle twitches
- Frequent headaches
- Seizure (I sometimes get an uncontrolled movement in my arm or body)

I never get fever or sweats so I might exclude Babesia and maybe other co infections from testing. Or is it just recommended to test all of them?

Any other blood tests that could be useful? I can test for pretty much anything at that lab. I already tested on vitamins & most minerals, these were good.

Many thanks
Posted 5/9/2017 10:40 AM (GMT -5)
One thing to remember, particularly once we know we have Lyme, is that Lyme lowers the immune function, so testing for any of these infections, particularly the co-infections, is not very accurate at all.

I did have a question about the seizures, how are you determining you have had a seizure and not just a muscle twitch, as you have that listed as well? If you are having seizures, I would not suggest you wait to see a LLMD.
Posted 5/9/2017 10:50 AM (GMT -5)
I think the general consensus here is to assume you have certain infections based on the symptoms, and go ahead and treat them (in sequence based on which grouping of symptoms seem to be at the forefront) The reasons being is co infections are even harder to detect by test than Lyme is, and treatments will overlap more than one infection just as many symptoms overlap the various infections. The money might be better spent on treatment if testing cost is coming out of pocket.

More valuable tests might be for Candida, the MTHR gene (or another genetic marker disposing you to detox resistance) or viral infections. There are a good handful of issues going on with an individual that might get in the way of being able to heal that can be easier to detect than those transmitted by the tick.

The bottom line is what to do if you have to be careful with your expenses, and understanding that not all co infections will be equally obvious in the beginning, and testing is unreliable. ETA: As Traveler just said.
Posted 5/9/2017 12:06 PM (GMT -5)
I didn't test for co-infections at first...and treated bartonella for a full year. Then a new LLND suggested I test to see what shows up.
This was a PCR from a lab that's not known in the 'lyme ' world.

Since it was reasonably priced ($125 each for bart and babs - but tested both urine and blood) - I decided to test.
I was positive for bartonella.
A negative wouldn't have helped me...but the positive response was HUGE ...as I was considering giving up on bartonella.
This made me pause and think for a bit.

A negative won't help you at all..but a positive will. It's a difficult decision - since most of us don't have any spare cash to use for more testing.

I think if you treat for a reasonable amount of time..and still aren't well...you can either test...and/or treat the co-infections...and see how you respond.
Often, it is a co-infection holding us back...even if we 'appear' to be asymptomatic for said co-infection.
Posted 5/9/2017 1:00 PM (GMT -5)
Thank you all for the answers!

Maybe I should add that money is not an issue for me at this moment, so this should not really be taken into consideration. I have a full time job and I also live with my parents (I am 24 yo) so I have no recurring costs. I am based in Europe which greatly reduces the cost of medical care. Just as 1000daisies, I am very analytical. I would like to know what exactly is wrong when starting a treatment. So I don't see what could go wrong by doing a blood test, worst case it's false negative and I lost some money (or best case, it's a real negative), but if it's positive for some infections I consider that to be very valuable information as it seems that both abx as well as herb treatments seem to differ from just regular lyme.

Traveler said...
I did have a question about the seizures, how are you determining you have had a seizure and not just a muscle twitch, as you have that listed as well? If you are having seizures, I would not suggest you wait to see a LLMD.


Sorry, it could be a translation issue, maybe it is a muscle twitch. I'd say that like a couple of times a week, I seem to get a random movement in my leg or arm for like 1 second. Initially I thought I had MS with my symptoms and I got my MRI 2 weeks ago, results came back and I have no lesions.


julymorning said...
More valuable tests might be for Candida, the MTHR gene (or another genetic marker disposing you to detox resistance) or viral infections.


Thanks, I will look into that. Any tips for which viral infections? I did test for EBV (positive, but most people seem to have this so I am not concerned).
Posted 5/9/2017 1:16 PM (GMT -5)
As long as you understand that there is likely a good chance of false negatives, and money isn't really an option right now, I would say why not test? As you said, it may give you some thoughts on what you do have to deal with.

Okay on the possible translation issue - it sounds like it is likely more of a 'serious' muscle twitch than what the English word for seizures would be. I've had seizures from these infections, and know that it's a dangerous issue.

A few of the viruses that come to mind other than EBV (which still needs to be treated if it's reactivated), are Cytomegalovirus (CMV), I don't know if you need to be concerned about Coxsakie virus in your part of the world....and my mind just went blank on the other viruses. Fortunately, we have many wonderful members in this community that will be along shortly to add their thoughts!
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