Ideas for pathogens to test for

Hello fellow Lyme Wizards.

I need your help. I am STILL searching for the cause of the pneumonia-like relapses I've had in December and again this past Oct. I've done some testing but no clues yet.

These episodes have plagued me for 20 years. I believe they started when I was initially infected with Lyme & Co. It starts with sore throat, swollen nodes, achiness in arms or legs/fingers, often sore kidneys, fatigue, loss of appetite, insomnia... and soon I develop bronchitis (with the air-hunger sx) and painful sinusitis that takes months to resolve.

Most notable was back during 2013 when I had this non-stop for 13 months. I was inbetween MDs and saw 4 different MDs at 3 different Urgent Care centers during this time. They put me on a z-pack, Amox, Levofloxacin and Clindamycin throughout this year.

- nothing helped and these pn sx got worse.
- AND I started developing yeast/fungal overgrowth from being on the oral abx for a year.
- The only thing that helped was starting on antifungal Rx. (Ironically, the GOOD thing that developed after being on all these abx was that it stirred up herxing from Lyme & Co and that is how I was able to identify some specific sx that I googled and figured I try out a Lyme specialist... and presto - CDC positive for Lyme, Fry Labs positive for BLO (bart-like organism).

Once I started treating Lyme & Co, high viral loads and yeast/fungal overgrowth, these episodes stopped!

Until this past Dec when I started taking high doses of an antibiofilm and BAM! I relapsed. It took me 3+ months to get over it and this really took a toll on my body. Only months after recovering did I really get my energy back.

I stopped Rocepin 2 months later. Remained on Vanco plus a ton of herbs... doing pretty well.

Then I had another relapse in Oct and I cannot find a trigger for this relapse. I also experienced such severe encephalopathy and sinus pain that was so bad I tried - but failed - to call 911. However, I also recovered within 3 wks this time---much faster.

We ran additional testing yesterday for toxemia(?) and a certain kind of fungus that I can't remember. I'll see her again in 2 wks and that will be my last opportunity to do more testing since I've reached my deductible for this year. So I would appreciate any ideas anyone might have for something we're missing.

After the first relapse we did the following DNA Connexions testing in February and found nothing:

Borrelia burgdorferi F7
B. burgdorferi Osp A
B. burgdorferi Osp B
B. burgdorferi Osp C
Babesia microti
Babesia divergens
Babesia duncani
Bartonella bacilliformis
Bartonella henselae
Bartonella quintana
Borrelia miyamotoi
Borrelia recurrentis
Ehrlichia chaffeensis
Anaplasma phagocytophilium

We also did blood draws for the following, which were also negative:

brucella
fanisella
rickettsia
Mycoplasma pneuomonia (not negative but "unremarkable")

Two weeks ago after this recent relapse we did the following tests:

Chlamydia pn
- IgG was 1:256 (Neg: <1.16)
- IgM neg
- IgA neg

B. henselae
IgG, IgM
Result: both neg

B. quintana
IgG, IgM
Result: both neg

Candida
IgG, IgM, IgA
Result: all neg

Babesia microti
IgG, IgM
Result: both neg

Myco pn
IgG
Result: 279
Range: (0-99 U/mL neg; "Above high normal")
Note:
Neg: <100
Ind: 100-320
Pos: >320
"The reference interval established is intended as a baseline oly. Values >100 may indicate a recent infection w/ M pn and need to be confirmed either by a pos IgM and/or an additional specimen drawn 2-4 wks later showing a significant increase in antibody levels."

Myco pn
IgM
Result: <770
Range: (0-769 U/mL neg)
Note:
Neg <770 (Clinically significant amount of M. pn antibody not detected.)
Low pos 770-950 (M. pn specific IgM presumptively detected. It is recommended that another sample be collected 1-2 wks later to assure reactivity.)

CMV
IgG
Result: neg

Rocky Mtn Spotted Fever
IgG, EIA
Result: neg

IgM
Result: .37
Range: (0.00-0.89 index)
Notes:
Neg: <.90
Equiv: .90-1.1
Pos: >1.1

A. phagocytophilium
PCR
Result: neg

Erlichia chaffeensis
PCR
Result: neg

*******VIRAL********

EBV
EA IgG
Result: neg

EBV VCA IgG
Result: 556.0 "above high normal"
Range: (0.0-179 U/mL)
Note:
Neg: <18
Equiv: 18.0-21.9
Pos: 21.9

EBV Nuclear Antigen IgG
Result: 416.0 "above high normal"
Range: 0.0-17.9 U/mL
Note:
Neg: <18
Equiv: 18.0-21.9
Pos: >21.9

Additional notes:
Early Phase = pos IgM
Acute Primary = pos IgM, pos/neg EA IgG, pos VCA IgG
Past Infection = pos/neg EA IgG, pos VCA IgG, pos EBNA IgG
Reactivated = pos/neg IgM, pos EA IgG, pos VCA IgG, pos EBNA IgG


HHV6
IgG 1.17 (Index; "above high normal")
Notes:
Neg: <.76
Equiv: .76 - .99
Pos: >.99

HHV6
IgM neg


THANK YOU
-p

There's a specific mono test - but the past couple of years I test negative. I had mono multiple times from my teens through my 20s.

My EBV levels are ALWAYS high. I've had probs with EBV my entire life - even before Lyme & Co. They were really high when I started Lyme & Co tx and have gone down only a little with high doses of antivirals and herbs. The levels are high even when I'm not symptomatic.

When these recent levels were done, I had been on high doses of antiviral Rx for a couple months... I agree, EBV stands out since everything else is neg but that still doesn't explain these episodes. I do think the continued high EBV titers might be a clue to something else going on that keeps these levels high - but just don't know what to look for.

-p

myco pn is very very likely. hard to test for, and hard to treat.

since anti fungals helped you might try to test for mold species such as

Aspergillus fumigatus

Aspergillus niger

Cryptococcus

Coccidioides immitis. (if you have ever lived in arizona/california)

list from merck on all the possible fungal infections in humans

https://www.merckmanuals.com/home/infections/fungal-infections/overview-of-fungal-infections

EDIT: since you mention encephalopathy you really should look at both Cryptococcus neoformans and Staph Aureus, both of which can cause that.

https://en.wikipedia.org/wiki/Cryptococcus_neoformans#Serious_complications

Post Edited (Lapis_29) : 11/23/2017 10:09:57 PM (GMT-7)

What about checking VIP level? Often the end piece of mold treatment. I don’t think this is causing episodes but could possibly help regulate immune response.

Man, wish i could be more help... But maybe check TB? And mold stuff. I'm hesitant to trust most of the mold testing. Shoemaker rubs me kind of funny. But that doesn't mean mold is a non-issue. Or airborne bacteria. I would focus more on symptoms in your home (ie water damage, condensation in your AC unit, etc)

Psilociraptor -

TB as in tuberculosis? No - I haven't tried that.
I have been on such high doses of CSM this year that there's either no way it's mold-related, or it's the CSM that is causing the relapses! I just can't figure that out.

I live in a good climate where I keep the doors open all the time and have great cross-flow ventilation. So I don't think there are any more mold issues in the house. But the environment can be moldy and there isn't anything I can do about that. However, I don't spend too much time on mold being the driver for all this because these episodes started 20 yrs ago when I lived in a diff state, had no mold issues, etc. Mold could still be triggering something.

Rikky1 -
No, I have not tried Cumanda and it is def on my list once I'm done with the stuff I have.

I was taking Beyond Balance BFM-1 - and started at 2 capsules b.i.d. - BOOM. It leveled me. So, after I recovered a bit, I started with 1/2 capsule/day, titrated up and crashed again. Recovered again - this time a little faster, restarted the BFM-1 and got up to a little higher dose then crashed again. This cycle went on for about 3 months before I was finally able to tolerate two capsules b.i.d.

-p

GH -

correct about what?

I been down the M. pn road - I am not paying for any testing right now so I'd like to continue ruling out other things.
Let me know if you have any suggestions... thanks -

-p

The myco plus a dozen fungus species? Or do you mean myco -

I'm currently not paying for testing until the end of the year.

I've tested myco twice - not getting a positive and won't get any abx w/out a positive - wanted to double up on abx and some tinctures. I'm on Beyond Balance ENL-MC but not much is happening. Still moving forward with the myco assumption.

-p

Thanks Rikky-

I have had good luck with the BFM-1. In the beginning (last Dec) I overdosed and that's when my first relapse happened. But after recovering and restarting at much lower doses a few times, I was eventually able to tolerate the optimal dose. I have done 2-3 more cycles of the BFM-1 since with good results.

I totally agree that the Lyme community can miss the issues with biofilms - few specialists are hitting them in the last stage of tx before people go off of the antimicrobials and anti-whatevers. If I had one criticism of my LLMD - that would be it. She seemed surprised that I wanted to start on antibiofilms - I was already drinking a cistus incanus tea and take heparin with every IV dose. But I just had that gut feeling it wasn't cutting it.

I can tell when I need to knock the biofilm back a bit because when the overgrowth is significant I walk into the sun and when it hits the biofilm it kills it and gives off this really unpleasant chemical burning smell... like burning toxic building materials. How disgusting is that? I call it my homeless robot body odor smell.

Sure a good thing this forum is anonymous LOL

-p