Inhalational Alzheimer's?

[Julie G]

Thanks for your support, Alysson and Circ. I literally trembled when I saw those results. They seem really bad; grossly out-of-range. (((LAC))) we've shared so much of our journey, why would this be different? Haven't I always called you my little sister? Was your TGF-beta 1 as bad as mine??? I'm also beyond grateful for Dr. Bredesen's help with this. I'm waiting to hear from him on my next step...

[Stavia]

(((Julie)))

[Sandy57]

Julie did you have a HERSTMI or ERMI after your house was flooded? I would question the TGF beta 1, that number is crazy high. Sandy is 5000 and we can't clear the toxin. You need MARCoNS, HLA - DR DQ ASAP. With the elevated C4a you are mold toxic, but without the HLA test you don't know if you can clear or not. ALso what is your MSH number, that number will be critical for you? Email me if u need more info. If I was Bredesen I would have every single patient tested, I am seeing a disturbing amount of people with AD/ MCI mold or Lyme toxic. Been doing my own mold research and detox protocol research and this is way tougher to fix that APOE 4 issues only. Have not been in contact with Dr. B for a while, but the evidence is clear cut to me now. Type 3, with toxins will prove to be the hardest to treat for sure. Not saying you have that, but Sandy sure does, and progress has slowed way down now.
Hugs, Frank and Sandy

[Julie G]

Waves Frank & Sandy! My HLA DR Haplotype appears to be 15-6-51, strongly associated with Lyme. I did have a tic bite with a bull's eye rash about 6 years ago and was treated with a low dose of minocycline for about a week. MSH is 6.7 pg/mL. I'd be grateful for any help interpreting this...

Thank you , Stavia. I need a hug right now .

[circular]

(((((Group((((((Julie!)))))Group)))))

(Is that how you do a thread group hug?)

[circular]

I think there are connective tissues in the neurons (and every other cell!). I've often wondered what affect that might have on EDS/E4 brains.

Dr. Bredesen's recent interview with STEM-Talk mentions some of the neurotrophic factors that, when not available or doing their job, combine to signal to the brain to start programmatic cell death. One he mentioned was extracellular matrix problems. I think but am not sure that the matrix would include connective tissue?

viewtopic.php?p=26365#p26365

To be clearer about the HLA EDS gene though, there have been genes identified for most well characterized forms of EDS except for the most common, hypermobile EDS. So the gene mentioned here with respect to EDS probably doesn't apply if someone has the hypermobile version. The tenascin gene is sometimes mistaken stated to be behind hypermobile EDS, but it's found only rarely in a subset. The Library of Medicine doesn't mention HLA genes among those it attributes forms of EDS to, and neither does this paper about hypermobile EDS, which explains that it's driven by genes that code for proteins and enzymes involved in collagen biosynthesis (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/); i.e., not genes like HLA involved with inflammation.

At the same time, unless he's changed, I think Dr. Afrin, the mast cell specialist/hematologist, believes that the ligamentous laxity in the common hypermobile EDS is caused by excessive mast cell activation remodeling the collagen with the chemical mediators released by the mast cells. This might help explain later onset cases like mine, especially where there are other signs of excessive mast cell activity, and be of a more immune nature. But genes associated with mast cell activity, to the best of my humble knowledge, also are not HLA genes. They're associated with KIT and others that 'encode proteins for various signaling pathways, epigenetic regulators, the RNA splicing machinery, and transcription factors'. http://www.croh-online.com/article/S1040-8428(14)00149-8/abstract

So I'm not really sure how an HLA gene got attached to EDS?

[LA18]

Julie, yes, yet another similarity! When I saw the beginning of your post, “Well crap,” I thought, oh no….

My TGF-beta is elevated, but it’s not as high as yours (it’s 8,220), and, interestingly, my c4a is in the normal range. I’ve seen TGF-beta values like yours posted online by a number of people with chronic Lyme, but I suppose with your immune deficiency your high value may not imply that (?). Have you tested for Lyme? That’s such a sticky area, with disagreement over the appropriate diagnostic criteria, etc.

My MSH is low (less than 8), and I’ve got the staph infection in my nose. I haven’t seen that report yet, but I suspect it’s pretty severe since I’m on the highest allowed dose of the BEG spray. I think that is doing something. After about a week my sinuses were much less inflamed than they usually are and I was feeling a little more energetic. I’ve probably had this for many years, so who knows.

When I did the CIRS testing I also did a viral panel. Evidently I have three active viral infections, including Epstein Barr (really high antibody load). I wonder if viral infections could be an issue for you with your immune deficiency.

How did you find out you had that? I know you’ve talked about this before, but I can’t find that post. Was the diagnosis based on your IgG antibody level? I remember being tested for that many years ago and I think my result was low. Since the doctor was looking for a high value, it was never mentioned. I wonder if that’s something I should look into. Clearly, my immune system is not functioning properly.

It will be really interesting to hear what Dr. Bredesen has to say. Were your other values – IL-6, MMP9 – high? I was in the lab normal range on those. I’ve read that the low MSH is serious, but I’m not clear as to why. Sometimes this all just feels overwhelming, but I’m still glad to know.

In terms of treatment, I think it’s really good news if you don’t have one of the crappy (“dreaded”) multi-sensitivity HLA haplotypes.

[Surfrank57]

Julie I am done with school tomorrow and will try to help as much as possible. Does Dr. B have your HLA numbers to see what he comes up with for the HLA coding. Are you saying your only Lyme sensitive and not multi or mold? If your MSH is really that low I am sure Dr. B said your are for sure dealing with some kind of toxin. Again that is extremely low. I argued with him in a friendly professional manner about Sandy's at 13. He even checked with Shoemaker personally and he said 13 is very low. That want numbers in the 40's or above. The reference range was changed a while ago, but neither guy believes in the new lower values, especially less than 20's. Are you sure yours is 6? Do you have any energy issues and how is your sleep? I almost do not believe your numbers, unless you just feel like crap your innate immune system is compensating some how. Stay positive because at this point I am questioning your labs, unless like I said you have some kind of significant symptoms going on that you haven't discussed yet. With MSH at 6 your energy should be nil, sleep should not be sound and many other issues come with that low of a MSH value.

Frank

[Julie G]

Huge thanks for the group hug, Circ. This is scary. Thanks also for the confirmation that my numbers suck, Frank . To my very untrained eye, I had that same sinking feeling. Dr. Bredesen very kindly wrote to me around 2AM his time- I swear he never sleeps. He confirmed my interpretation of HLA haplotype and suspects I am dealing with a chronic Lyme infection. He says it explains EVERYTHING; my depleted innate immune system (hypogammaglobulinemia,) my MCAD, my very high TGF beta-1 & C4a and low MSH. He remarked that my TGF beta-1 is working overtime removing abeta, gulp. He recommended that I connect with Dr. Keith Berndtson, a Lyme/CIRS specialist located just a few hours from me. I plan to make the first available appt. I'm clearly starting a new phase of my health journey.. I'd be lying if I said I wasn't scared, but I'm also feeling incredibly blessed to have Dr. Bredesen's guidance. I've seen so many physicians over the years who've simply labelled and chronicled my illnesses and decline (MCAD, hypogamaglubulinemia, CVID, etc.) He's the first physician who asked why. A tiny part of me is feeling hopeful that I can get to a better place. XO

[BerniF]

(((Julie))) it sounds scary as hell but you are in the best possible hands and as you say, hopefully understanding why will help you deal with the underlying causes and make some real improvements. Knowing the cause is the start of fixing it