Question Re: my Daughter with Lyme and Autoimmune issues

[JulieKatie]

THis is a cut and past from a message I sent and wanted to get more opinions.
I haven’t been on the site for awhile. My daughter has been through a lot since my last post. SHe has lyme disease…and coinfections. Am sure she has some autoimmune stuff along with that…just no name for it. We did 15 mo with Picc line and IV antibiotics, and only got worse with that. She stopped those in Oct 13, and started on herbal treatments. Since then, I feel she has made quite a bit of improvement, although she has a long, long way to go. We recently found a family practice doctor who is very interested in helping Katie. I feel he may be able to come up with help for the autoimmune portion (I know Lyme is autoimmune, too, but seems like something else, too) He classified her as Mixed Connective Tissue Disease, which is a good lump group to put her in. I am curious about ideas for treatment. We will continue with our LLMD on herbal treatments. I am giving her a lot of good vitamins to build up her immune system, too. I think most of the meds used in autoimmune diseases would allow the lyme to prosper so not sure what people do to address those symptoms. (drugs like methotrexate and humera) Am I right? Do any of you have knowledge in this area? I am kind of grasping here, and my hope is to get Katie back to functioning better. I know you all aren’t doctors, so no worries there. I just want thoughts…things to look into. I want to prepare myself for many options so I can be more knowledgeable for Katie. Thanks so much.

Sincerely, Julie
Mom of Katie: Lyme (coinfections at least Bart And Babs) x 6+ years
IV antibiotics with PICC line x 15 months
Currently on Herbal Treatment plan with CatsClaw, Chinese Senega Root, A-Biotic
Tons of vitamins/minerals, probiotics.

[JulieKatie]

Forgot to say my daughter is 14 1/2 yrs old and in 9th grade.

Thanks, Julie

[Maz]

Hi Julie,

Thanks for your PM – will respond here in case anything may be of some value to others in their researches.

Sounds like you’re on a reasonable track for Katie now, the herbals, hormone balancing and beta blocker, to help with some of the difficult symptoms she’s still experiencing. A diagnosis of MCTD is common with Lymies, but it’s been described as a bit of a “junk” or “garbage” diagnosis, as no one really knows what it is, except that it’s multi-symptomatic and looks like a lot of overlapping diseases, so it’s given one broad heading. Lyme and coinfections are multi-systemic and can trigger and look like anything in the “autoimmune” category, too. No one really knows why some folks with Lyme get just RA or scleroderma or lupus, but theories are that it may be due to borrelia and/or coinfection strain variations or altered host genetic pathways and other environmental factors (e.g. toxic exposures and ability to detox).

Probably the best model I’ve come across recently is the Dr. H. model of MSIDs (mixed systemic infectious diseases syndrome) and he’s written a really comprehensive book, based on his experience of treating 10s of thousands of chronically ill and chronic Lyme patients. It’s worth watching the following video presentation for a quick 101:

http://funmedwebinars.wistia.com/medias/w3n7cymstt

But would also suggest reading his new book for complete details, “Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease.”

Dr. H. explains why, in some cases, antibiotic therapy alone doesn’t work for some patients. He describes the chronically ill patient with 16 nails in the sole on their foot and by giving that patient antibiotics it may cure him (or at least put him into remission), but that usually the chronically ill patient has 15 other nails that need to be investigated and removed, one at a time, in order to get the immune system back on track and have the patient back in a place where they can then be strong enough to keep the bugs in their cages.

There are different ways to treat these various nails, as described in the book – conventional treatments to ameliorate symptoms and/or to assess and treat root causes. For e.g. many patients have a heavy metals load they were completely ignorant about until properly tested. Heavy metals will keep bugs holed up in biofilms that create an impenetrable fortress against antibiotics. They also create systemic inflammation that will affect cardio-vascular function. So, dealing with heavy metals with chelation while also working on biofilm-busting protocols can go a long way to busting these bugs out of their hidey-holes and, ultimately, reducing inflammation. Have always found it interesting that tetracyclines and some commonly-used rheumatic drugs, like penicillamine, sulphasalizine, all have some anti-microbial and chelative properties.

When speaking with my LLMD about my genetic haplotyping that was run to look for my detoxification status, I asked if this meant that my genetic make-up fated me to a life-time of chronic illness. He said absolutely not and that just as genes can be switched on, they can also be switched off once the “hand” that flips the switch is identified (not his words, but my interpretation of his answer). An example of this is the recent research out of U. of Utah here that describes an enzymatic deficiency that causes a genetic switch to turn on inflam in both RA and Lyme disease:

viewtopic.php?f=1&t=9948&p=71934&hilit=utah#p71934

If they can correct this enzyme deficiency, they may be able to stop runaway inflammation safely in rheumatic diseases without having to shut down immune function completely. It doesn’t mean the chronic infections are gone, but it could mean that the inflammatory environment in which these bugs thrive is switched off and then the bugs can be more easily treated.

Just some thoughts for you to research further, Julie, and hope that identifying Katie’s “nails” will go a long way to getting her back to wellness. 🙂

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