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LLMD visit today was interesting as always.

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Lyme Disease
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Posted 11/1/2016 12:00 AM (GMT 0)
I saw my LLMD today, and he is also one of Dr. Shoemaker's CIRS docs, which is awesome. We have been thinking mold, mold mold for months now, with little improvement. I am thrilled to report that he was very happy I was pursuing Buhner herbal protocol for mycoplasma & bartonella. He actually has all the books.

He is doing a full immune panel to see what's up, checking again for Bart & Babs and a new round of CIRS markers.

He thinks my symptoms are babesia, but says he sees bart in there as well due to my crazy Houttuynia reactions. So, we will see if blood work shows anything this time or not, but the good news is that after this amount of time & effort, he is convinced I am still fighting infection rather than leaky gut or mold issues.

One very big marker for me that is . in the tank is MSH (Melanocite Stimulating Hormone). On the surface, it simply seems like a hormone affiliated with skin pigment, but in reality it is the hormonal field general, in charge of all the rest. In and of itself, it is antibacterial, but when in the tank, little else is ok hormonally.

My MSH keeps falling (almost to 0), and my leptin is good... which is interesting and probably not gonna last too long if we don't find my trigger. He was at a CIRS conference a couple weeks ago, and there is more things to look at and try, so many vials of blood later ... we wait again for results LoL

Meantime, keep up the UVLrx and Buhner herbs.

I love the fact that he was open minded for UVLrx and herbal protocols and abx.... and he just wants to solve this puzzle as much as I do... I seem to always be encouraged when I leave his office. Perhaps one day, the remission will fall into line. I know it will!

I just hit a full dropper of Houttuynia yesterday... and the herx is crazy... it has taken weeks to get in to a flow with this herb. I'm ready to add another, so hopefully herx calms down and all normalizes so I can move forward...
Posted 11/1/2016 12:10 AM (GMT 0)
That is AWESOME!!! Nothing like a good plan. Excited that you are moving forward and making progress 😊.
Posted 11/1/2016 2:11 AM (GMT 0)
I just like his support for me and my homeopathic ways... and all the crazy things we try, LoL...
Posted 11/1/2016 2:45 AM (GMT 0)
3HumpedCamel I am so very happy for you!!! Nothing better than working with someone you get along with. It is an awesome feeling.

Good for progress!! Yippeee Skippy!
Posted 11/1/2016 4:26 AM (GMT 0)
I have never heard of MSH before...now my curiosity is piqued.
Posted 11/1/2016 3:48 PM (GMT 0)
Hi, Girlie. Here are a couple of links. MSH is a big deal, and it's my worst blood test result. I won't be well until we can fix this issue. But, again, I have my LLMD full attention on the matter. I love his support, but I'd love to see progress in how I feel, LoL. Such a roller coaster!

This is an excerpt relating to mold illness, which is a general reason for MSH to tank. But, as I said, we are convinced it is Lyme & most likely so-infections causing my problems. As my LLMD said, the CIRS problems can be from 3 factors. Mold, infection, leaky gut.

MSH - Melanocyte Stimulating Hormone
Normal Range: 35-81 pg/mL

Alpha melanocyte stimulating hormone (MSH) has multiple anti-inflammatory and neurohormonal regulatory functions, exerting regulatory control on peripheral cytokine release, as well as on both anterior and posterior pituitary function.

In mold illness, MSH will be too low in over 95% of patients. This means increased susceptibility to mold illness, ongoing fatigue, pain, hormone abnormalities, mood swings, and much more. MSH is a hormone, called a regulatory neuropeptide, and it controls many other hormones, inflammation pathways, and basic defenses against invading microbes. Without MSH, bad things happen; chronic sleep disorders with non-restful sleep develop, and endorphin production is reduced, so chronic pain follows.

This link is not all on track. It says some good things, but some is incorrect. It is easy to understand though:
/selfhacked.com/2016/03/10/alpha-msh-its-role-in-weight-control-autoimmunity-cirs-and-cfs/

This link shows some more info: www.survivingmold.com/diagnosis/the-biotoxin-pathway

There is one specific link I was looking for, but it was one I found by linking to links to links to links... I haven't found it again...
Posted 11/1/2016 5:41 PM (GMT 0)
Congratulations on such a wonderful appt! While the MSH has to be very frustrating to deal with, at least you know!

I found information that it could be due to secondary adrenal insufficiency, or a pituitary gland issue as well. Maybe you could include those in your search terms for some help?
Posted 11/1/2016 6:27 PM (GMT 0)
Yes, Traveler. Thank you! We have checked pituitary but it's been a while and may warrant testing again... and my adrenals seem inline. Right in the middle of good inline.

My thyroid shows Hashimoto's, but when I take even the smallest dose of thyroid meds, it jumps too high... I think that's good news that you can still so easily change those values... it gives me hope.

I hope the immunology and co-infections testing shows something concrete. My doc had some great ideas.
Posted 11/1/2016 6:57 PM (GMT 0)
It's wonderful that you have such an awesome doc!! I wish they all were!! LOL!

Best of luck with this, and please do let us know what happens, and how things go! We are always interested, and I doubt that you will be the only one to find themselves dealing with this, so it adds to our information base. :-) Besides, we like to know how you are doing!!
Posted 11/1/2016 8:13 PM (GMT 0)
Dna connexions will test for pcr ..no doc needed ..
Posted 11/1/2016 8:18 PM (GMT 0)
The problem with PCR testing is that a small number of bacteria is all it takes to create a severe infection for some, and yet with PCR testing there has to be a large number of bacteria in order for it to be accurate.
Posted 11/1/2016 8:24 PM (GMT 0)
Aw, Thanks Trav for the support - my doc is pretty awesome, but I know he is overwhelmed with patients also.

I appreciate yours and everyone else here whoo cares enough to chime in and openly share information on this forum. So much great research and detail. It honestly makes a world of difference. I value this forum more every day. The open nature of it. The honesty. The diversity of treatment plans and personalities. I appreciate each and every one of you.

I am happy that we have a plan, and now all I need is time to see what we can change internally. It's so confusing and like a big scary maze... we try things, run into walls, pick ourselves up and try a different direction. I just hope Jack Torrance (from the Shining) isn't in my maze, hahahahahahahahahahahaha.

I am doing pretty well. If I could ditch the awful foot pain, I actually feel like exercising a little bit. I have a very long way to go on the herbal protocol, and we are simply waiting for new blood test results. So, I think it will be pretty boring for a while (which isn't bad either, LoL)
Posted 11/1/2016 8:25 PM (GMT 0)
Congrats! (And thanks much for the pointers to new reading materials!!)
Posted 11/1/2016 8:44 PM (GMT 0)
Thanks, grdner... I am still looking for the other articles. I simply can't find them again :(
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