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Posted 10/11/2016 6:36 PM (GMT 0)
So, I tested Igenex positive for lyme in 2014. Clinically diagnosed for Bartonella.

Did lyme treatment only for too long (a year) ...and then added Bart treatment. Been treating bart for a year now...(well a little less because of a couple breaks)

I saw different LLND in the summer...just for a new set of 'eyes'. She suggested I do a test with a lab in Ontario to check for babiesia. It's blood and urine...dna testing. I believe it's a new lab. They don't specialize in tick-borne diseases...but all infectious diseases.
I was skeptical...because I know dna testing has high false negatives. But, each test was only $125 and that included both urine and saliva.
I did Babesia, Candida...and decided to do bart as well.

I called the lab this morning...and they finished testing...results sent to my Dr. They said they can't give me the results. I asked "Is there any reason for me to make a Dr. appt? If they're negative...I don't need one"
She said "You should make a Dr. appt."
I then pushed further...lol...and said "Was I positive for babesia?" She said 'no'...."Was I positive for bartonella?" she said "YES"

So, since it's PCR - that means I still have active bartonella, right? It's not the same as antibodies...where it can be an old infection that isn't active...right?

Also, I emailed the new LLND and told her...and I mentioned that the Bartonella guru (Dr. M) says that one mistake people make is giving up with a year or less of treatment...that it can take longer than that.

The LLND said she had a recent conversation with Dr. M. and got some good information regarding treatment...and she said maybe we should go over what I've done so far. (I have been treated with a different LLND)

She is also going to the ILADS conference in November...

I cried when I got the results...just to know that my persistent symptoms could still be bartonella.
Posted 10/11/2016 6:46 PM (GMT 0)
This wasn't the results I was expecting when I read your post on another thread, but it's good you know for sure what's going on.

I'm also glad if you really don't have Babesia. I'm guessing this lab's results on that are solid?
Posted 10/11/2016 6:54 PM (GMT 0)
So sorry to hear that you still have Bartonella, but great thing that you don't have Babesia.
I think that your LLND will figure out a good approach so you can fight the infection for good, as you say she had a convsation with Bart guru doc. Fingers crossed.
Which are your symptoms now?
Posted 10/11/2016 6:55 PM (GMT 0)
No, negative results don't mean negative.

It means they didn't see any dna of the bacteria in my blood or urine.

It may be there, but just not in that sample.

But,from what I've read...a positive is a positive and means active infection...

Hoping someone will confirm that.
Posted 10/11/2016 6:58 PM (GMT 0)
BBM - Don't be sorry...I was actually happy it came back positive...I know it sounds 'warped' but I was getting frustrated with the lingering symptoms...and starting to doubt the bartonella treatment...that maybe I should stop it...but now I know it's still there.


*** several months ago I had some bad cat bites on my forearm...got infected...and infection grew...I had to go on antibiotics for it...and the Dr. said if it wasn't getting better by the next day - he wanted me on IV abx.
(The area was swollen and red...and was spreading)


Maybe I got reinfected with bart .... I think it was in february.
Posted 10/11/2016 6:59 PM (GMT 0)
Girlie,

For some of us these co's are tough to beat. I've been fighting Bart and Babs for a real long time. Bart seams to be my most prevalent for the past two years. My goal is to just get back to 85 or 90% and find the right ABX and herbal maintenance protocol to keep me there, even its for the rest of my days.

Don't dwell on it too long... just keep rotating and adding new herbals. You are bound to find the right combo that works for you.

I just started taking Takuna along with my Cat's Claw, Jap Knotweed, Hout, and will give CSA blend a rest for a while. Buhner doesn't list Takuna in any of his books I've seen. I think Cowden lists it somewhere to help with immune support. I'm still pulsing Bactrim and Ceftin two weeks on and 2 off.
And need to make a change at next LLMD appointment in 3 or 4 weeks.
Posted 10/11/2016 7:05 PM (GMT 0)
I'd be happy with 85 or 90% - not there yet.

My worst symptoms are the nerve pain - I can handle it on my shins, and other areas...but my back - thoracic area...shoulder blade...its killing me...slowly..

And, these darn 'shivers' I get...when I wake up I get them and then I sweat after.
They're not always from the cold...but I will usually get them when I'm cold. Also, though when my brain is stimulated. I went to a movie last night "Deepwater Horizon" - and I was shivering like crazy....but I know I wasn't cold because i had warm clothes on.

Takuna? I haven't heard of it.

I know some of you are thinking I should be disappointed still having bartonella...but no, quite the opposite...because I now know why I still have these symptoms...I was questioning what I needed to do next...

I would hate to have these symptoms leftover after infections are fully treated....so it gives me hope that treatment will help alleviate them.
Posted 10/11/2016 7:09 PM (GMT 0)

Girlie said...
So, I tested Igenex positive for lyme in 2014. Clinically diagnosed for Bartonella.

Did lyme treatment only for too long (a year) ...and then added Bart treatment. Been treating bart for a year now...(well a little less because of a couple breaks)

I saw different LLND in the summer...just for a new set of 'eyes'. She suggested I do a test with a lab in Ontario to check for babiesia. It's blood and urine...dna testing. I believe it's a new lab. They don't specialize in tick-borne diseases...but all infectious diseases.
I was skeptical...because I know dna testing has high false negatives. But, each test was only $125 and that included both urine and saliva.
I did Babesia, Candida...and decided to do bart as well.

I called the lab this morning...and they finished testing...results sent to my Dr. They said they can't give me the results. I asked "Is there any reason for me to make a Dr. appt? If they're negative...I don't need one"
She said "You should make a Dr. appt."
I then pushed further...lol...and said "Was I positive for babesia?" She said 'no'...."Was I positive for bartonella?" she said "YES"

So, since it's PCR - that means I still have active bartonella, right? It's not the same as antibodies...where it can be an old infection that isn't active...right?

Also, I emailed the new LLND and told her...and I mentioned that the Bartonella guru (Dr. M) says that one mistake people make is giving up with a year or less of treatment...that it can take longer than that.

The LLND said she had a recent conversation with Dr. M. and got some good information regarding treatment...and she said maybe we should go over what I've done so far. (I have been treated with a different LLND)

She is also going to the ILADS conference in November...

I cried when I got the results...just to know that my persistent symptoms could still be bartonella.

Girlie, are you at Liberty to name the Lab?

I am still dealing with Bart symptoms as well. Would be interested in being tested.
Posted 10/11/2016 7:28 PM (GMT 0)
Yes, I can name it. It is a Canadian lab though and it's not well-known. I wasn't expecting to get any useable information from it.

www.dna-human.com/index-eng.asp

Buzzlymeyear - I doubt if it's better than the Igenex Bartonella PCR test. I think I just got lucky.

I still believe it has high false negatives...
Posted 10/11/2016 7:38 PM (GMT 0)
Did you happen to get candida results?

Keep at the bart!!! You'll get it - I'm sure of it.
Posted 10/11/2016 7:42 PM (GMT 0)
Thank you for the information Girlie.

That lab is near the G. Magnotta research Centre, the first research facility in Canada to study Lyme Disease and eventually other vector-borne illnesses. Concord On (Lab) is an industrial suburb of Vaughan On (Research centre). I wonder if they are connected. If so, I would consider them to be reputable.

They will also educate medical professionals through this facility.

So exciting.

Post Edited (Buzzlymeyear) : 10/11/2016 2:02:22 PM (GMT-6)

Posted 10/11/2016 7:42 PM (GMT 0)
Also, wanted to say it's great that the tests were somewhat affordable. I'd like to try the dna connexions - it's like $400 but includes lyme, bart, baba, erhlichia and i think anaplasma. Betterhealthguy has posted positive feedback on it.
Posted 10/11/2016 8:27 PM (GMT 0)
Girlie,

I'm sorry you still have Bart. I really am. I understand you being happy that you now understand why you have symptoms. So this is over two years to heal? Wow. Sounds like you are doing everything right. Well, you definitely helped other today. Thanks to you we will know not to quit treatment too early. I wish you continued healing, less nerve pain and 100% recovery. Glad you went out to a movie. It's always good to feel 'normal' - even if you did shiver. Well sending you good vibes.
Posted 10/11/2016 9:16 PM (GMT 0)

k07 said...
Did you happen to get candida results?

Keep at the bart!!! You'll get it - I'm sure of it.

She said they were negative...but that doesn't mean they are.
Posted 10/11/2016 9:20 PM (GMT 0)

k07 said...
Also, wanted to say it's great that the tests were somewhat affordable. I'd like to try the dna connexions - it's like $400 but includes lyme, bart, baba, erhlichia and i think anaplasma. Betterhealthguy has posted positive feedback on it.

Is it a PCR test? And is it urine, saliva...or both?


I could have had one that included several for $325, but it didn't include babesia...or Candida (my llnd suggested that one) - So, doing the three I wanted separately was $375...compared to $575 to do the panel plus the two extra.

I don't need lyme - already Igenex positive, and ehrlichia and anaplasmosis should be taken care of with lyme treatment.
Posted 10/11/2016 9:22 PM (GMT 0)
I know you're glad to know what you're still dealing with. You will get there.
Posted 10/11/2016 9:24 PM (GMT 0)

Huddie said...
Girlie,

I'm sorry you still have Bart. I really am. I understand you being happy that you now understand why you have symptoms. So this is over two years to heal? Wow. Sounds like you are doing everything right. Well, you definitely helped other today. Thanks to you we will know not to quit treatment too early. I wish you continued healing, less nerve pain and 100% recovery. Glad you went out to a movie. It's always good to feel 'normal' - even if you did shiver. Well sending you good vibes.

Yes, two years. But, I feel time was wasted on lyme only treatment. If the bart treatment was started 6 months sooner, I would be at this point at 18 months of treatment.

Well, I don't know if I'm doing everything right. I have not been tested for heavy metals, or mold...
my llnd said he didn't think I needed to.

Maybe I will discuss those two things with the new LLND.

Thanks, Huddie.
Posted 10/11/2016 9:37 PM (GMT 0)
Girlie, Girlie, Girlie :)

You are doing everything right. What's six months in the world of Lyme? LOL! I'm guessing many on here are more self aware and do the deep digging. I don't know anyone with lyme in real life who does herbs and cleanses. My in-laws think I'm crazy. My mother-in-law had lyme full bulls eye and everything (twice). Never stopped eating white flour, sugar, coffee or wine. Never took an herb or supplement ever. Another friend of theirs is the same way, and this man has diabetes and a few other ailments. Abx and just done. They go on with their life. Not sure if they feel awful and contribute it to something else, if abx can really heal some without any other changes, or if they were so fortunate as to not get another infection. Honestly don't know. I do know that in about a year or two if I'm not healed I'll just take up drinking!
Posted 10/11/2016 9:47 PM (GMT 0)
Girlie, Glad you got some confirmation for your symptoms. It stinks, but at the same time we rejoice in that! Keep on treating and herb cheers to us all getting well!!

Boy, I can relate to what you said about nerve shin pain. Totally tolerable, but this really hits home...

Girlie said...
And, these darn 'shivers' I get...when I wake up I get them and then I sweat after.
They're not always from the cold...

Posted 10/11/2016 9:52 PM (GMT 0)
I get those shivers tooo!!!!!!!!!! I didn't know they were bart!!#

Girlie I've heard bart, babesia, mycoplasma are notoriously hard to eradicate minimum of eighteen months. Its SO HARD being patient but we have to be!
Posted 10/11/2016 10:05 PM (GMT 0)
jenny and humpedcamel - tell me more about your shivers. They are really disturbing for me.
Do either of you sweat sometimes after?
I think I can rule out menopause as the cause...because what I've read and heard from women is they sweat when they're in bed...and then pull off the covers because they're so hot...and then get cold and put the covers back on.

Mine start with shivering...and I've already got the covers on me...


So, mine are worse when I'm cold...but they also happen when I'm warm...and I hear a song I really like...it seems to be linked to my autonomic nervous system.

My first LLND mentioned anxiety...but I truly am not suffering from that. It seems to be independent of anxiety.

I did have anxiety - haven't in a couple of years, though.

I also get them when I have to go to the bathroom...just prior. (not pee)

Is it adrenaline? Is it endocrine related?
Posted 10/11/2016 10:49 PM (GMT 0)
Girlie, glad you got the test results. I always think more information is always better than guessing.

As for the shivers. Pee shivers are normal and many without lyme get those. I noticed that mine were more often with lyme.

mentalfloss.com/article/19128/why-do-i-shiver-when-i-pee

But!!!!! I think that the shivers you are experience at night in bed with the covers up are lyme. And the reason I say this is because I had it.

All nice and cozy in bed, just about to fall asleep and a shiver. I just chalked it up to lyme because I was deep into it at the time. And when I healed/remission those went away.

However the pee shivers have not. And those are so weird..... I just let them go as "normal." I'd hate to this I was A B Normal. lol
Posted 10/11/2016 10:53 PM (GMT 0)
umm.. mine aren't pee shivers...they're the other...lol.

and..it's right before I have to go...
Posted 10/11/2016 11:05 PM (GMT 0)
Girlie,

I'm very interested in what your LLND says regarding her conversation with Dr. M and her recommended treatment from that conversation. Please keep us updated!

Edit: also interested in how long bartonella treatment generally takes if Dr. M is saying over a year? I'm at 4 months on Rifampin/Biaxin.

Post Edited (Mustard Seed) : 10/11/2016 5:22:33 PM (GMT-6)

Posted 10/11/2016 11:09 PM (GMT 0)
Girlie, my shivers are crazy! I cannot imagine it's hormonal. It's way too weird, and I am too young for hot flashes, LoL.

I shiver sometimes while I'm sweating... like in a FIR sauna. I am a sweating mess with goosebumps. It feels so odd.

Sometimes I can't get warm, but it's not cold at all (75 degrees here right now). My puddling night sweats have really improved since I started UVLrx and even the small amount of herbs... but yes, I would shiver then sweat in bed. Pretty much gone now.

I do still profusely sweat... I over-sweat a situation completely... take for example house cleaning. I mean, I'm not working that hard. Vacuuming pretty much... and I need to change my shirt as it is soaked with sweat is DRIPPING down my face & back. My hubby laughs at me (really with me). I figure, if I'm gonna sweat like that, I should be burning so many calories ... but I'm still the same weight LoL.

Anyhow, it's one of my bigger symptoms since earlier this year when I regressed from feeling well. I never had this symptom before when Lyme was initially thriving.
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