Need Assistance

Alzheimer's, cardiovascular, and other chronic diseases; biomarkers, lifestyle, supplements, drugs, and health care.
Walt
New User
New User
Posts: 2
Joined: Wed May 31, 2017 6:44 pm

Need Assistance

Postby Walt » Tue Sep 12, 2017 12:53 am

My husband, currently age 68, began experiencing cognitive impairment about three years ago. Started with simple things and progressed. Last January we had a series of testing done; MRI, neuro-psych for about four hours, and sleep study. It showed he had a small meningioma but that it was not impacting the brain. His neuro-psych showed reduced reflexes and visualization resulting in the opinion he should not drive and he hasn't since that appointment. He showed decline in his executive function in regards to numbers and calculations. The neurologist basically said there was nothing she could suggest for him. The sleep study showed severe sleep apnea; 49 episodes and hour, and he got and uses a cpap machine. We began doing research and found Dr. Bredesen and his protocol. My husband switched to a ketogenic diet in March. He is religious about it and when his gene testing came back that he carries one copy of Apoe4, he eliminated saturated fats and dairy. We live in western Canada and found a naturopathic doctor near us who took the two day physician's seminar with Dr. Bredesen and prior to that had treated patients with dementia with diet and supplements. My husband has been following the protocol with diet , supplements (42 caps ) a day, bio identical hormone replacement, exercise and weight lifting. We were waiting anxiously for the Bredesen Recode algorithm to be ready and when it was, we subscribed to that. Our doctor input all the test results we had and we had a lot. The results came back with optimal readings in all the areas except for Type 3 because we had not had the mold testing done for that type. Our doctor has been trying for months to secure the testing for us. It is not available in Canada. She has contacted other Bredesen practitioners in Washington state and none have replied. She has tried with the Bredesen group without success. I have tried with the Bredesen group without success. I am so stressed about this because I feel my husband slipping a bit each day and there is this big hole that we cannot rule out because we cannot get the test. I keep thinking that this may be his issue due to such optimal levels in all his other type testing and the fact that he started his decline around 64. The area that he has the most challenge is in organization, calculations and visualization. I heard Dr. Bredesen speak in a video that those are the classic areas for the Type 3. Timing is so important with treatment and I am willing to do anything to get him help. We have family in the San Francisco area and we can travel there if someone can recommend a doctor to help us or we can travel down to Washington state. Does anyone have any suggestions for us? Karen

Sandy57
Contributor
Contributor
Posts: 198
Joined: Wed Dec 17, 2014 2:24 am

Re: Need Assistance

Postby Sandy57 » Tue Sep 12, 2017 5:40 am

Aloha Walt and Karen

What test are you specifically asking about? When you say mold test, are you talking about multiple tests, including HLA DR/ DQ, MSH, C4a, TGH b1, VIP, VEGF, etc. or are you talking about RNA testing from Dr. Shoemaker? If you can help pinpoint what you need, the good folks on this forum can help.

Frank

User avatar
Julie G
Mod
Mod
Posts: 6735
Joined: Sat Oct 26, 2013 6:36 pm

Re: Need Assistance

Postby Julie G » Tue Sep 12, 2017 5:53 am

Welcome! I'm traveling and typing on my phone so apologies in advance for incomplete info. It sounds like Type 3 may be a likely contributor. You can learn more and find a list of the necessary tests in this thread. You may be able to get some of them done in Canada. Any helpful physician can order for you. FWIW, the tests are also very difficult to have done in the states, especially the C4a. Finding physicians knowledgeable about CIRS is equally challenging. I know of three: Dr. Mary Kay Ross (Savannah, GA & Los Angeles, CA,) Dr. Heidi Wittels (somewhere in PA,) and Dr. Sharon Houseman Cohen (Austin, TX.) of those three, I would recommend, Dr. Wittels based upon patient load. She's extraordinarily knowledgeable and just completed Dr. Bredesen's training in Dallas. Best of luck to you both.

circular
Contributor
Contributor
Posts: 3719
Joined: Sun Nov 03, 2013 10:43 am

Re: Need Assistance

Postby circular » Tue Sep 12, 2017 7:21 am

Karen, wow, Walt is so lucky to have you with your loving dedication to him. I agree it might help to know exactly which tests you can't get in Canada, and whether it's country wide because they're not approved there or just that they're not available in your area. If you know, this information would be good general knowledge for us as well as helping us help you.

I got C4a in the US at Any Lab Test Now and the gal working in the lab was already knowledgeable about its quirks/processing. You might see if this lab is in SF or Washington. I suspect so. It still might take making sure ahead of time that the particular lab will know exactly what to do. I had to buy dry ice on the way there for use in transporting the sample to where it could be processed by National Jewish labs. There was another place it could be done, but at least at that time everyone said to use NJL.

I got my doctor to run a boatload of other CIRS/mold labs through my insurance (small miracle!) and they were all handled by LabCorp. Life Extension now offers an abbreviated 'Biotoxin and Mold Illness' panel (not including C4a) and they use LabCorp. Will come back with the link... http://www.lifeextension.com/Vitamins-S ... ness-Panel

Your description of your husband's trajectory sounds so much like my mother, except I couldn't get her to agree to try the protocol. I know she's had a lot of water damage exposure over the years. Keep up the great work and let us know how you solve this.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

User avatar
KatieS
Mod
Mod
Posts: 1144
Joined: Wed Mar 05, 2014 1:45 pm

Re: Need Assistance

Postby KatieS » Tue Sep 12, 2017 8:21 am

Karen, your husband's apneas per hour is the same as mine before CPAP treatment. My husband was diagnosed with sleep apnea as well, and has declared this to the magic bullet to regain his cognitive functioning. He went from not reading to reading a book a day to writing three after a few years. Be sure and check that his CPAP treatment is optimal, particularly as to the oxygen levels and be patient. Regaining the CPAP induced damage tends to take ~ a year.

circular
Contributor
Contributor
Posts: 3719
Joined: Sun Nov 03, 2013 10:43 am

Re: Need Assistance

Postby circular » Tue Sep 12, 2017 8:48 am

Hi again Karen and Walt, Frank touches on a very interesting possibility, although an expensive one, when he mentions Dr Shoemaker's RNA sequencing approach to CIRS/mold/biotoxin evaluation. I can't vouch for how well validated his interpretations are (I suspect not very well yet?), but he presents this as pretty much the next generation for biotoxin testing that is much more precise than the boatloads of blood work (although maybe they're used together?).

I am very tempted to do it myself to get first hand experience with it, because I have a lot of different viruses in my blood work, some with high titres. He claims that the RNA sequencing will tell me whether or not they are indeed active and if so which ones, which the blood results can't do (even perhaps when the levels are high?). In addition, I think that rather than just say what one's HLA SNPs are, the RNA sequencing would tell you wether those SNPs are activated (?).

I think the test is about US $1500 and requires repeats. Ugh! http://www.survivingmold.com/news/2017/ ... ty-part-1/ (see the link to part two at the end). I'll try to find an interview with Dr. Shoemaker I heard about this. It's in our forum archives.

You might contact Dr Shoemaker and see if there is someone local to you who has trained with him. Also, maybe the RNA approach is both more available to you and yields better data (?). The biggest drawback may be that it hasn't been widely tested and validated, although many would say his original protocol isn't either. I find the comments about VIP in part 2 at Shoemaker's website are very interesting.
Our group has published two papers on genomics, with the first in 2015 on the chronic inflammatory response syndrome (CIRS) seen in ciguatera and the more recent paper, a landmark study showing existence and correction by VIP (after the antecedent steps in our protocol are completed) of a host of gene activation abnormalities seen in CIRS caused by exposure to the interior environment of water damaged buildings (CIRS-WDB). This paper also included the absolutely stunning finding that the use of VIP dramatically changes genes controlling function of both ribosomes and mitochondria, possibly revealing the main sources of chronic fatiguing illness. Incredible. Recall that ribosomes serve as the intracellular site of protein synthesis (the place where RNA initiates production of polypeptides and proteins), and mitochondria produce cellular energy in the form of ATP. For the first time, ever, a patient can be tested to show us definitely what is actually happening with the CIRS illnesses and the genomic, transcriptomic and proteomic consequences.
Last edited by circular on Tue Sep 12, 2017 9:29 am, edited 2 times in total.
ApoE 3/4 > Thanks in advance for any responses made to my posts.

circular
Contributor
Contributor
Posts: 3719
Joined: Sun Nov 03, 2013 10:43 am

Re: Need Assistance

Postby circular » Tue Sep 12, 2017 9:19 am

Here's the post with links to Dr. Shoemaker's interviews with Chris Kresser discussing his new RNA sequencing approach to biotoxin illness. It's embedded in our long CIRS thread with you may find worth a read.

Here are the direct links to the interviews:
I highly recommend Chris Kresser's second interview with Dr. Shoemaker (May '16) and this recent interview with Dr. Shoemaker (March '17)
ApoE 3/4 > Thanks in advance for any responses made to my posts.

Walt
New User
New User
Posts: 2
Joined: Wed May 31, 2017 6:44 pm

Re: Need Assistance

Postby Walt » Tue Sep 12, 2017 10:38 am

Thank you so much. I might also add that Walt has been doing intermittent fasting since June at 12 hrs and upped that to 16 hrs about two weeks ago. We also had our current house tested for mold and I have attached the report. From my research on how to read this report, it appears borderline but if Walt has mold sensitivity, what might be borderline for him could be a contributor. We lived in a very humid environment in the Caribbean for fourteen years where mold was a constant issue. We moved back to Canada a year ago but his condition has not improved in our current house. There is also a possibility of cross contamination due to the fact that we brought all of our carpets and some wood furniture. I am sending all the rugs out for cleaning and cleaning the wood with a vinegar and oil solution.

As to to the testing, when the Recode Report Results came from Bredesen, one part of it was in red type and said that the test was incomplete due to the absence of various tests. Now some of the tests requested have been completed in other forms, such as the heavy metals tests. Walt had the chelated urine test for heavy metals that is far more complete than the blood test but because the Recode is an algorithm, there is no place to input the test results like that. Suffice is say, we know his heavy metals level is not the issue. The big gap as I mentioned before is the tests required to rule out Type 3. They are not available in Canada and our natureopath cannot order them from a lab in the states. All requests to Bredesen practitioners in Washington to request that they order the tests for us have been successful. I know the Bredesen group is very busy now with the launch of the book and other matters and they are working on incorporating Canadian practitioners and blood testing but they are not there yet and our clock is ticking.

The tests we need are C4a, TGF-beta1, Mmp9, MSH, Vegf, Vip, Adh, and Hla Dr Dq Mold Series. There is also a request for Hla Dr Dq Multi Sens, Hla Dr Dq Lyme Sens, Hla Dr Dq Other Sens. We know these tests are expensive and we have no insurance for the US to cover any of them. But Walt's health is forefront for us. We have even thought of attending his four day immersion next spring. It may be the only way we can get the testing done but that is months away.

Walt is a very healthy individual, other than this. His weight is good, his muscle tone, and he takes no medications. All his blood results are optimal. I would add for interest that he was a strict vegan for over four years to my consternation. He also severely restricted his healthy oils and took no fish oil. I had his inflammation tested last fall with Dr. Barry Sears and his level of inflammation was extremely high. With one month of fish oil supplementation, his inflammation levels were basically non existent. So can four years of inflammation and lack of healthy oils and animal products be the trigger for an Apoe4 single carrier. My thoughts are yes. Now how to flip that switch is the challenge. This is all, of course, if he is not Type 3. This is what keeps me up a night.
You do not have the required permissions to view the files attached to this post.

User avatar
Sara
Support Team Intern
Support Team Intern
Posts: 64
Joined: Mon Jul 03, 2017 4:44 pm
Location: Between PA and FL
Contact:

Re: Need Assistance

Postby Sara » Tue Sep 12, 2017 12:51 pm

Greetings Karen and Walt,
Welcome again to the Apoe4.info site. You are both amazing and right on track! So many different angles to investigate. Personally speaking, I come from the business side of health care (not a clinician) and my first thought was to wonder if you had gotten a second opinion about the meningioma. So of course, I googled meningioma and logic and found a couple of sources that indicate some connection between meningioma and "problems with logic or reasoning; memory loss." I am guessing you have already looked in to this but thought it worth mentioning just in case you haven't. I also looked up Dr. Heidi Wittels (per Julie G's suggestion) and find her offices are located within driving distance of Philadelphia where they have a stellar health care system should you consider the east coast. I know that would be quite a trip for you.
Wishing You Both the Very Best,
Sara
Functional Medicine Coaching Academy Candidate
BS, MBA

User avatar
slacker
Mod
Mod
Posts: 459
Joined: Wed Aug 03, 2016 6:20 pm
Location: Louisville KY

Re: Need Assistance

Postby slacker » Tue Sep 12, 2017 1:18 pm

I know enough about ERMI to be dangerous, so please take my remarks with a few grains of salt. From what I could tell by combing through the incredibly dense survivingmold.com website, if the ERMI score is under 2 AFTER remediation, all is good. I could not find what the ERMI score cut off is prior to remediation. So looking at your ERMI of 1.13 is (so far) reassuring. However, there is also a HERTSMI-2 score, which is calculated from 5 of the molds measured on ERMI. A calculation worksheet is on the survivingmold.com website. Your HERTSMI-2 score is 16. Apparently, over 15 is dangerous for CIRS AFTER remediation. Clear as mud?

I'd also like to note that the relevance of these scores is unknown until you know if Walt has multi susceptible biotoxin HLA DR. You may need to make a trip to the US and visit a lab that allows self ordering tests to get some of the CIRS work done. Your Bredesen trained naturopath may be able to help with an appropriate lab order. Bredesen's book points out the tests that are most important to get for a CIRS workup, and others that are second line. Unfortunately, these labs are expensive.
Slacker
E4/E4


Return to “Prevention and Treatment”

Who is online

Users browsing this forum: No registered users and 5 guests

 

 

cron