MARCONS

[LNN]

I posted last week about needing ideas for DD6 - labs show chronic infection, but abx so far are just keeping things at a low boil. Her physical symptoms are vague, not very lymey. She doesn't even have "true" OCD in that there's lots of intrusive thoughts telling her she's bad at things, has no friends, etc but no compulsions. Just the thoughts.

 

We see the LLMD this afternoon. I'm going to ask to have her tested for pyroluria, since DS9 tested positive. But she's also had a bloody nose a few times this week. No gushers, just blood when she blows her nose. We have a cheap otoscope and when I looked in her nose yesterday, it's very red and raw. Has me wondering about MARCONS. But before I go into the appt, I was hoping for some feedback.

 

For those of you who've gone down this path...how was it diagnosed? Nasal swab? ART? Trial of treatment? Has the BEG spray been effective? Is it expensive? What have you used, what have you experienced? Thanks for any info.

[mama2alex]

We used the BEG spray for several months. I don't know how our LLMD knew MARCONS was an issue, but after just a few days on the BEG spray, our son's moods started to even out. He was very bipolar-ish at the time, so this may have been the clue for the doc? Not sure. He would be giddy and almost manic one minute, then exploding or crying the next.

 

DS hated the spray up his nose twice a day and fought me on it, but I negotiated, bribed, or whatever it took to get it in there every day. Finally, the LLMD said we could take him off. He waited a few months, and now wants us to do the nasal swab to double check that the infection's completely gone.

 

It was $112 for a bottle, but well worth it for us!

[JuliaFaith]

DS13 had T&A and ENT did the deep nasal swab while he was asleep. LLMD dr. was surprised when it came back positive so quickly. Apparently, a lot of them do not and she retests several times before getting a positive. Probably had something to do with how deep they were able to do the swab. He used the BEG spray 3 months and quit. Energy as been thru the roof. We ordered BEG spray twice for $88 each and insurance paid for most of it. This son never had a sinus infection or any sinus issues that we know of.

 

Had more than a whole bottle left so husband has been taking it since he has had a sinus infection for years and none of the dr. he had seen could do anything about it. He is almost done and is feeling "more energetic than he has in years." Had him also take salmon oil and chlorella with it for detoxing.

[sf_mom]

We use Bactroban Nasal ointment to protect and treat MACRONS for all of our children. Its an ointment, we swab every couple of days or when we know the kids will be in social setting with other potentially sick individuals. This is just part of our LLMD protocol with our children. We've been using since starting Lyme Treatment. We did not test specifically for MACRONS.

 

My husband uses the BEG Spray. He too thinks its a little tough on nasal cavity. We did not test for MARCONS but are using the BEG Spray to potentially deal with some of his lingering infections that might be in nasal cavity... The chronic cough he had since last Jan. is 90% improved since starting the spray.

Edited August 26, 2011 by SF Mom

[LNN]

Thanks everyone. At our appt., my daughter's nose was more pale and runny, looking very "allergic" as opposed to infected. It's the height of ragweed season here. I guess allergy shots for the past 14 months are working, since ragweed is one of her highest triggers and she hasn't had any outward symptoms (no itchy eyes etc). So the nose symptoms seem to be part of that. I asked about a xylitol spray and he felt that would be too irritating at this moment. So we'll do some quercetin as needed and just keep an eye out.

 

As an update to our other issues, we'll be testing for KPU, since her brother has it. We'll also be adding NAC to see if it helps with some of her anxiety-driven behaviors and re-starting bactrim, which we stopped in June. We spent a lot of time discussing bio-films and parasites, especially those that hang out in the plaque of CCSVI MS patients. Every time we focus on DD, the conversation comes back to parasites. She's taking mimosa but I see no changes one way or the other. Our LLMD is hesitant to do ART or even trial "let's see what happens" treatments for biofilms or ivermectin for parasites given DDs small size and age. There's a Fry test for the protozoa FL-1953, but it's $500. So it's on the table but first we'll look at KPU and build up her own immune system. Then see what remains. It's frustrating to not have a more definitive path, but I can't argue with the need for caution. I've seen my son get really sick from herxing and he's 3 years older and not petite like she is. We don't need any medical crisis on top of what we've got brewing. She's too little for many of the treatment options anyway. So we wait and see and hope Core will help her the way it's helped my son, if the KPU test comes back positive.

 

Thanks again to everyone who's offered advice and friendship.