Death Rider
Can ANYBODY get this disease? You bet they can. We all know it. Heck I was as healthy as a horse when I got sick. I was out there running the hills every day but Chris Graber – who’s gotten sicker than I ever got – made me look like a couch potato…Pre-illness I never came close, after all, to doing the Lake Tahoe Death Ride…
Life was good: Part of the winning team of a co-ed marathon bike ride (Chris on right)
The Tahoe Death Ride is a 12-hour 130 mile road cycling event climbing over 15,000 feet over three Sierra Nevada peaks (two of them done twice). It starts before dawn. One website states the obvious: “This is not a ride for amateur bikers or for those who are out of shape. Strong bikers looking for a challenge and perhaps a bit of insanity are encouraged to register.”
That was just one of Chris’s jaunts. There were the multiple 24 hour-relay mountain bike races, 8 hour solo mountain bike events, the half marathons and full marathon, the 15-mile trail runs on the weekends, the < 6 minute mile runs, plus the soccer, surfing and whatever else he picked up over time.
Get the picture? The man was a physical specimen. He regularly pushed his body way beyond the normal limits of endurance without consequence – and ended up absolutely shattered.
In case you wondered – this disease or diseases can knock anyone out.
The Lake Tahoe Death Ride
To think it all started so innocuously. Chris Graber seemed to have it all. An A student and varsity tennis team player he graduated second in his high school class.
The Hits Begin
His future was bright indeed when he hit his first “dip” during his junior year in college He’d just moved into a funky smelling apartment by the beach in Santa Barbara and cleaned out a refrigerator full of mold. He attributed his ensuing weird gut issues and fatigue to giardia he’d possibly picked up on a hiking trip (he tested negative for it) but rebounded when he moved to another apartment. He ended up graduating with honors in Mechanical Engineering.
He moved to the San Francisco Bay area, got jacked up on the latest computer and website technology and became a software engineer. His typically excellent health was punctuated by some odd symptoms (spacey, anxious, lethargic) perhaps caused by some of the dodgy places he lived in, but otherwise he was doing fine.
Around 2002 he moved back to beautiful, dry San Diego, his hometown. He got married, bought a house, and had two children. It does rain sometimes in San Diego and when those “atmospheric rivers” from the Pacific reach far enough south to hit it, it can really pour.
The house ended up with major water damage one year due to repeated crawlspace flooding, with mold spreading up the interior walls of the home. Chris ended up under the house replacing almost all the piers and columns, then moved to some better homes for a few years where he felt quite good.
The Crash
Surely the damage to Chris’s system was growing, but it was the move to another house in 2011 that brought him down. The landlord disclosed that mold problems in the house had caused some tenants to move out, and the home was musty smelling. (Later on it’s ERMI test rating was found to be an 8.2, putting it in the “top 15% moldiest homes” category. An inspector later told him “your family should not live there”.) Over the next year Chris gradually got sicker and sicker.
First there was the fatigue, then the anxious feelings, then the inability to sleep. Work, of course, suffered. Then that buzzy feeling nervous system feel that some with ME/CFS/FM experience showed up. Then came the orthostatic intolerance (dizziness). In time he eventually he got almost all of the 37 symptoms Dr Shoemaker has noted. (He got 34 of them).
♦Fatigue ♦Weakness ♦Aches ♦Muscle Cramps ♦Unusual Pain ♦Ice Pick Pain ♦Headache ♦Light Sensitivity ♦Red Eyes ♦Blurred Vision ♦Tearing ♦Shortness of Breath ♦Abdominal Pain ♦Diarrhea ♦Joint Pain ♦Morning Stiffness ♦Memory Issues ♦Focus/Concentration Issues ♦Word Recollection Issues ♦Decreased Learning of New Knowledge ♦Confusion ♦Disorientation ♦Skin Sensitivity ♦Mood Swings ♦Appetite Swings ♦Sweats (especially night sweats) ♦Temperature Regulation or Dysregulation Problems ♦Excessive Thirst ♦Increased Urination ♦Numbness ♦Tingling ♦Vertigo ♦Metallic Taste ♦Tremors
By November 2012 the “Weekend Warrior” was gone, incapacitated. He stopped working at the software engineering manager position he’d held for nine years at a healthcare/finance company. Chris, of course, went to doctor after doctor gathering vague diagnoses such as depression or “chronic fatigue”.
A ray of hope showed up in in November 2013 – a few positive bands on an Igenex Lyme test (but negative on the standard tests) – and he was diagnosed by a local LLMD with Lyme. This sent him on a search for a top notch LLMD and eventually he travelled to Gordon Medical Associates but the Lyme protocols (drugs/supplements) failed utterly.
Different wheels: former marathon mountain bike rider in wheelchair
Now the one-time endurance athlete was in a wheelchair much of the time, living out of his parents’ house – his marriage in tatters. (He’s getting a divorce). He had a groshong catheter (central line) for home treatments (lots of IV saline for dehydration), and an oxygen machine. Often he was unable to leave the house, couldn’t tolerate sitting in a car, or seeing his children.
Circling, Circling….
In Nov 2013, at his LLMD’s suggestion, he took (and passed) Ritchie Shoemaker’s online VCS test online at survivingmold.com, which the LLMD suggested. Various Lyme doctors had run a few of Shoemaker’s markers on (TGF-beta, C4a, ADH), and he’d tried one of Shoemaker’s binders but had never had a full workup done. A MARCoNS swab (he researched and then performed it himself) was positive but the treatment he was put on for it was ineffective.
Chris was circling some important answers but he wasn’t there yet. After two years of failures, his last LLMD, not having anything else to offer, half-heartedly suggested that maybe it was mold, after all. Maybe it was but Chris had had enough. He gave up trying to get better and began to paint. (He’s actually quite good and he likes to rap as well. It’s a little irritating at how many things Chris is good at…(lol))
Bingo
Chris hit rock bottom in Dec. 2015. Living in a dark room much of the time, barely functioning, and having difficulty speaking or standing much of the time he felt he was at death’s door.
Dr. Shoemaker’s mold protocol brings Chris back from the brink
Somehow he dug in again. The mold idea had stuck with him. He read Dr Shoemaker’s book and website and papers, watched his online conference and went to town on the Shoemaker protocol. He got the full Shoemaker blood workup, had an Neuroquant brain MRI done and spoke with Dr Shoemaker on the phone. When Dr. Shoemaker explained the results something clicked. Finally, he had someone who could make sense of all of it.
It was mold after all. He began Dr. Shoemaker’s stepwise protocol.
- Tried a different living situation to lessen exposure, stayed outside as much as possible. Practiced mold avoidance.
- CSM/welchol binders.
- BEG spray for MARCoNS three rounds.
- Cialis to help breathing and circulation and suspected pulmonary hypertension.
- Lots of electrolytes to help ADH/osmolality.
- Hormone support from Clomid (his testosterone was tanked, but Dr Shoemaker noted that doing testosterone replacement isn’t a good idea typically; it converts to estrogen), and calcium d glucarate/dim to lower estradiol.
- Tried losartan for a while and it did help his TGF-B1 come down.
- When the time came, he began VIP spray and gradually ramped up to a high dose. This treatment seemed to be the key.
For the first time in five years he began to gradually improve. His inflammatory markers went down. He was able to drop the sleep meds. By summer 2016 he was able to move out on his own. He began riding a bike again, walking, and swimming a bit.
In 2017 he moved to an apartment in Arizona near his mold doctor and threw some Air Oasis and IQAir machines in it. He moved to another unit shortly after, hoping to find as safe a place as possible to heal. He’s just recently healthy enough to work a bit from home. His company is www.captivecoder.com. (He created Julie Rehmeyer’s new website. He’s on a Social Security Disability plan that allows him to do some work.)
Not well – but back on the bike…
In January he was able to slowly walk and cycle about 300 miles total, the most he’d moved in years…and by March it was 340 miles. That’s a lot more than most people with ME/CFS could do but Chris still has a way to go. He’s still not healthy enough to drive, for instance. No longer bedridden and so incapacitated, but he still has many symptoms.
His search for complete health continues. Shortly he’ll be doing 6 rounds of dental prolozone in the jaw where wisdom teeth were extracted. Low bone density was noted in those regions via a 3d cone beam CT scan. (Jaw cavitation issues have been linked to sinus issues for MARCoNS). He will keep swabbing his sinus area, checking for MARCoNS. An ENT found that he had a deviated septum – surgery is a possibility. His parathyroid is another possible issue. He’s trying various supportive supplements, along with a mostly organic diet.
(Chris says he’s in supplement burnout and would love to get off of them. in the meantime he’s been rapping about them and other aspects of his illness. Check out his supplement and other raps including “EFF Mold” here.)
Mold really was it for Chris. He’s improved enormously under Dr. Shoemaker’s protocol. Gratified at his progress he, in collaboration with Dr. Shoemaker, created a patient-friendly “101” guide to mold issues and a summary of Dr. Shoemaker’s program.
I asked Chris some more questions about the nitty-gritty of mold avoidance and mold recovery for him
Several people (Julie Rehmeyer, Joey Tuan and others) left all their belongings, bought new clothes and camped out in the desert to see if they improved. Did you ever go that route?
I never camped in the desert. I was too weak to tolerate sitting in a car. Or camping on my own. I couldn’t drive. Still can’t. I still think it’d be a terribly hard option for me currently. Camping is exhausting, the gear is expensive. It’s isolating. My friend here who is camping just went to the ER for dehydration.
At my “bad” house in 2012 while going to Gordon Medical and trying CSM the first time (and I just did the ERMI) it was suggested that I maybe camp. I slept on the trampoline – not ideal. Then tried sleeping in a tent in the back yard, also not ideal. I got hot and dehydrated and went to the ER. I was very sensitive to sounds and temperature differences. I just couldn’t sleep well outside. It was uncomfortable. Exhausting.
After I moved to my parents’ and found more out about mold, I tried living in their garage/shed (no running water, no insulation – basically a concrete slab with redwood planks around it). It was a terrible experience. Cold, lonely. I began trying to stay outdoors as much as possible, and still do to this day.
Throughout time I did get rid of most of my belongings and got new clothes multiple times.
To remediate or not? What to do with a possibly moldy house is a perplexing question
The home mold issue is one of the most perplexing and frightening there is in ME/CFS and FM. Homeowners face the possibility of extensive and expensive home remediation or abandoning the house altogether and moving on – perhaps with steep financial losses. I know several people who are/have struggled with what to do with their homes.
Mold is an issue that you really don’t want to be wrong on. Based on your experience what steps should a homeowner or renter who suspects that mold plays a role in their illness take?
At my parents we had multiple inspectors come, including a FaceTime with Greg Weatherman (he eventually came out in person). We fixed many issues in the house – bad attic insulation and HVAC ducting replaced (rat issues), new top loading washer – a long list. I ran many HERTSMI tests. I cleaned like a madman, using up my precious energy. The testing and remediation is incredibly expensive – daunting.
A few steps that come to mind if you suspect mold is an issue for you or your house
- Educate yourself. Become your own expert. Don’t make assumptions. The Mold Illness Made Simple eCourse is one great resource. Read the “101” document. Read Shoemaker’s site and his published papers. Read his free FAQ. Get the opinion of a CIRS (Chronic Inflammatory Response Syndrome) doctor. Read the biotoxinjourney.com site.
- Use your intuition. Is your place musty smelling? Are there some major issues that need to get fixed? Where do you feel better? Where do you feel worse?
- Be very careful about expenditures like fancy HEPA filters (bandaids) and expensive remediation.
- Take test results with a grain of salt. One HERTSMI test only shows a few data points. Get expert opinions to interpret tests and make decisions.
- Don’t necessarily throw everything away because a test comes back bad. Perhaps save as much as you can in plastic bins stored in garage/storage shed/etc – revisit later.
You’ve improved greatly using both mold avoidance (safe house/air filters) and targeted mold and other supplements; apparently just removing yourself from the mold has not been enough. Do you have any sense of what benefits you’ve received from removing yourself from the mold vs taking the mold targeted therapies?
Everyone seems to be affected a bit differently. My opinion is that just avoiding mold is not enough, especially for a severe case like me. Dr Shoemaker’s protocol underscores the importance of step 1: you have to be as careful as possible and in as safe a place as possible, otherwise the treatment won’t be as effective.
But the world isn’t perfect, and the issue is apparently genetic. Until you change the underlying gene expression issue (with VIP), and heal your brain as much as you can, exposures can keep tipping you over the edge.
A Guide to Understanding Mold Issues – the Shoemaker Way
A ton of information exists on mold out there. Check out a condensed version Chris Graber and Dr. Shoemaker created on mold here. This comprehensive resource contains information on what Dr. Shoemaker believes mold illness is, how he tests for and treats it, Dr. Shoemaker’s online course for patients, how to find Shoemaker-certified doctors, how to test homes for mold and suggestions on what to do if your house has a mold problem and more.
- Check out Chris Graber’s summary of Dr. Shoemaker’s approach to mold: “Mold/CIRS 101 Document for Patients” here.
- Check out some Mold Recovery Stories on Health Rising (Got your own mold or other recovery story? Let us know).
- Had an experience with mold? Let us know in the comments section.
Thanks for sharing this story, Cort.
Here is another story that you posted a while back, of Giles Meehan of “Get Well from M.E.” (It is not listed on your recovery stories page.)
https://www.healthrising.org/blog/2014/04/11/different-world-mold-story-giles-meehan/
Thanks Lisa. I will get it in there.
For those who don’t know Lisa’s Paradigm Change site is the comprehensive mold information site that I know of.
A extremely welcome post Cort and thanks to Chris for his bravery in sharing his story and his work on Mold 101. Chris is an inspiration to many in the mold community, whip smart and very funny. May his healing continue.
This is an inspiring story. Thank you for sharing this Cort. I have finally been diagnosed correctly. Spent 10 years bouncing from Dr. to Dr. and Fibro clinic to Fibro clinic. Turns out I never had Fibro. There is no test to say if you have Fibro/CFS/ME. I had what Chris has and you can measure and test for it. Had tried everything the best Fibro Dr.’s told me to do and nothing worked until I started treating for “biotoxin illness” or “mold illness” as some call it. Because the testing shows inflammation I really like the name of Chronic Inflammatory Response Syndrome that Dr. Shoemaker gave it. Please….more stories like this. I have believed the experts in this field, which include Dr. Shoemaker, who believe that around 90% of Fibro/CFS/ME is misdiagnosed and is really what Chris talks about. If you read this Chris – great job for hanging in there and for being a fighter – you’re an amazing man!!
Thank you. Thanks to Cort for posting.
Wow, quite a story and quite a warrior! I relate to Chris’s story as mold turned out to be key in my Lyme/Bartonella/Mold battle. Strength and Courage Chris!
I started being ill when I moved to a house where the roof leaked, and the bedrooms were covered in black mold and always wondered if there was a link.
fyi: choosing a job in IT was most unfortunate due to proximity to EMFs, viz, Dietrich Klinghardt,MD,PhD:
The production of bio-toxins in mold cultures increases by more than six hundred times when exposed to cell phone radiation from a nearby cell phone tower.http://www.earthcalm.com/emfs-and-mold-a-deadly-combination
Excellent! Thanks for all the info. I’m a mold survivor too. What a long journey it’s been. It’s never completely over once you are exposed. It makes the body super sensitive to everything. One thing I found to be key was products from Supreme Nutrition. I rotated them as they appeared to be needed. I have my life back. Still a work in progress – but functional.
Issie
I also found it interesting that choline is one of his supplements. Upping my levels recently has had an amazing result. Not only for the brain fog – but for energy. Here is an ongoing thread on what some of us are finding.
https://www.healthrising.org/forums/threads/who-doesnt-benefit-from-acetylcholine-supplements.5216/page-2#post-28511
Issie
Great work, Cort, and kudos to Chris for sharing this inspiring story. I just wanted to share a little handout I wrote for people suffering from mold illness about some of the online support groups and other online resources that have helped me the most.
CIRS Support and Information Groups
Suggestions from Lisa Lerman lerman@law.edu
Updated April 2017
Because CIRS is a complex, chronic condition, it is incredibly useful for patients to participate in discussion groups with others who have the same health problems. We CIRS patients encounter new questions every single day. Topics include, for example:
• figuring out if our homes or offices are making us sick
• finding safe housing—first temporary housing, and then longer-term housing
• deciding what if anything to bring from a moldy home to a new home
• learning what products to use to clean laundry, furniture, etc.
• dealing with doctors, employers, family members and others who “don’t believe in” or don’t understand our illness
• trying to understand our own symptoms to recognize mold exposure
• learning to recognize and respond to fatigue and cognitive fog caused by CIRS
• figuring out what stores, restaurants and friends’ homes are safe to enter
• learning strategies that will help our bodies to dump mold toxins
• cleaning and maintaining our homes to meet our health needs
• finding bedding and furniture that we don’t react to
• selecting HVAC equipment or air filters that will help to clean the indoor air
• finding mold consultants and remediators, duct cleaners, and other service people who will help us to make our homes safe for us
• learning about the complex issues of human biology involved in our illness
• dealing with the financial burdens and challenges of CIRS
• dealing with anxiety and depression that can be triggered by the challenges of CIRS
• getting validation and support for the daily challenges that confront us.
We need good doctors who are up on the evolving approaches to treating CIRS, and who will help us to assess our health status and to take steps that will aid us in getting well. But we also need each other. The learning required to manage this illness well is like drinking from a fire hose. In the online discussion groups, there are lots of new people who are just starting up the learning curve, and there are lots of people who have years of experience to share. We try to help one another.
Because so many of us are struggling health-wise, the easiest mode of communication with other patients is through online discussion groups. The best ones that I have found are on Facebook. There are scores of groups that are relevant, some for people with CIRS/toxic mold illness, and others for the many related illnesses that some of us have, including lyme disease, chemical sensitivity, thyroid issues, and others. Most of the members are patients, but some groups have members who are health professionals, mold consultants, or family members of patients. Below, I list some of these groups. I hope you will decide to join us.
Biotoxin Resources https://www.facebook.com/groups/biotoxinresources/
This is a relatively new group whose purpose is to share articles on medical and scientific research that is helpful to CIRS patients.
Mid-Atlantic Mold Illness Support https://www.facebook.com/groups/1398378190468392/
This group is targeted to people who live in the Mid-Atlantic region (roughly CT, DC, MD, PA, DE, NC, NJ, NY, VA, and WV) so that we can share local resources, but people who live in other places are welcome. I am the administrator of this group, so feel free to contact me with questions about it.
Mold Avoiders
https://www.facebook.com/groups/moldavoiders/
Mold Warriors United (in memory of Jared)
https://www.facebook.com/groups/375502212635338/
Toxic Mold, CIRS and Lyme Disease Support Group
https://www.facebook.com/groups/toxicmoldcirssupport/
Toxic Mold: Rediscovering Health and Wellness https://www.facebook.com/groups/rediscoveringhealth/
Toxic Mold Support Group https://www.facebook.com/groups/116659898371180/
Setting up an account on Facebook is easy. Go to http://www.facebook.com and follow the prompts to set up a new account. If you get stuck, get help from a friend or family member. You can elect privacy settings to protect your privacy as you wish. These groups are “closed” groups so you need to click “join” and then the administrator will admit you. People who are not in the groups cannot see any of the posts.
A few useful websites
My Biotoxin Journey, http://biotoxinjourney.com/
This site includes articles by one CIRS patient who has done a fantastic job of sharing his own experience and synthesizing a ton of information about treatment.
The Better Health Guy http://www.betterhealthguy.com This is another site that offers an abundance of high-quality information for us.
Paradigm Change, http://paradigmchange.me/ This site has a much longer list of discussion groups and a long list of relevant websites.
Surviving Mold, http://www.survivingmold.com/
Thanks Lisa! I will incorporate your resources into Health Rising’s Resource section.
Wonderful!
So glad to hear you’re getting better, Chris! I am too! I’m not in the mold groups any more so hadn’t heard that you were able to get out some now. Keep on rapping!! ?
I saw Santa Barbara and my stomach leapt. My apartment for 5 years at UC-Santa Barbara’s Family Student Housing (Storke I) was never re-leased after I left. I had heard of two neighbors becoming ill — the middle of the buildings was sinking and the mold was everywhere. I was diagnosed at Student Health with allergy-onset asthma — that was cleared up with Claritin. Little did I know it would get worse. After a bout of mono, I simply could not recover. My diagnosis is ME/CFS. Was it mono or the mold pit?? I often wonder!
Or both together – a double hit?
So I went to UCSB 92-96 and couldn’t really go in the main library…It was so musty. If I remember correctly, folks working there were having some difficulties and perhaps the HVAC was an issue.
My classic case of ME/CFS began when I had mono while living in an apartment with a toxic mold problem. I didn’t know it at the time, but I figured it out later.
Mold avoidance, as extreme as I am able to do it, has helped me a lot.
Thank you so much for sharing this story, Cort! I hope that you continue to feel better and better, Chris!
Those interested in this topic likely will want to read this new article about mold avoidance and ME/CFS in the prestigious science journal “American Scientist” as well.
http://www.americanscientist.org/bookshelf/pub/an-illness-observed
God bless Lisa man
All the work that she’s done has saved lives
Thank you Lisa
And thank you Cort
Agreed! and Thanks…
Great interview! Thanks for passing that on.
Uh Newsflash: Julie Reymeyer’s extreme avoidance didn’t cure her after all. She was well for about a year, then relapsed and is now recovering again after CCI surgery. And who knows what’s next…
You mention “heal your brain.” What did that part of the process look like for you, or what makes you mention that aspect? I have learned in recent months so much about the brain, including how those brain tests, like I think you had done, can be incredibly enlightening. Keep pedaling!
Hi Lynn. The entire Shoemaker protocol aims to heal the brain, as the damage to the brain causes many of the symptoms and hormone imbalances, etc. Please read Dr Ackerley’s Brain on Fire article. https://www.survivingmold.com/community/mary-ackerley-the-brain-on-fire-the-role-of-toxic-mold-in-triggering-psychiatric-symptoms
This stuff is so damn complex. I went did multiple ERMI tests and other mold tests and came up with varied results each time. I had my urine tested for mold which supposedly revealed Stachybotrys. Meanwhile, my ERMI tests did not find it. I did the MARCONS test and found that I have non Antibiotic resistance Staph (does that matter?) I did all of the labs and most of them were not good and I have the genetic susceptability, but supposedly the important ones like C4a were not bad enough (labs at the bottom). I did multiple online VCS tests and kind of failed. I had all of my pipes under the house replace and I had multiple mold remediation companies come out. I hired the one that actually had mold sensitivity and used CSM and had a PHD in BioChemistry and said that the $800 urine tests for mold were not valid. He, also, stated the ERMI test was also not very useful. http://www.mold-free.org/Gary_Rosen_Ph_CV.pdf
Anyway, we sealed off my AC vents and I had my AC replaced as their was black mold on the inside. Once the house had been cleaned, Chlorine Dioxide is pumped in through the house to kill all remaining mold and viruses. Oral CD and CD enemas is one of those things that is still on my list as potentially helpful – look up Kerri Rivera and autism. Meanwhile, before and after, I have ranged from 90% to 20% back to 70% and currently somewhere around 40%, so I don’t think mold is a major trigger, but I know everytime I used to go to the movie theater, I would have allergic reactions which I attributed to mold. So, as I try to figure out the grand plan to get me back to 100 or currently 50% would be nice,I investigate and try to tie in different parts of different plans. The cholestyramine binds to toxins which according to my CD4 counts I have. Also, the VIP Dr. Cheney recommends as helpful – see one of my prior articles. Anyway, that is my 2 cents. Here are my labs from Feb of 2016.
2/12/2016 Quest Leptin <.3 .3 – 13.4 Hunger Hormone – Below Lower Threshold
2/12/2016 Quest Lipase 63 7-60 High
2/12/2016 Quest Prolactin 5 2-18
2/12/2016 Quest TGEF – Beta1 1980 344-2382
2/12/2016 Quest VIP 39 <75
3/11/2016 LabCorp HLA DRB1,3,4,5,DQB1 (IR) Positive Genetically Susceptible to Problems clearing toxins – Mold susceptible
3/11/2016 Quest C3a 79 55-486
3/11/2016 Quest C4a 9700 9-2830 High
3/11/2016 Quest VEGF 5.7 High
4/15/2016 Quest LH 1.4 1.5 – 9.3 Low
4/15/2016 Quest Osmolality 374 50 – 1200 Urine?
4/15/2016 Quest Sodium 134 135 – 146 Low
4/15/2016 Quest Testosterone 265 250 – 1100 Low
I know Chris…it’s really rough! Thanks for sharing all that though.
How are you doing now?
Hey Cort,
Last year was rough. I was bed and housebound for the first part of the year and then 2 days after I had the CD piped through my house, I felt better again. That lasted for a week, then my kids shared a virus and I spent another 2 months and after feeling a little better and a little hopeful again, I had either food poisoning or a GI infection which messed me up pretty bad for 3 more months. So, finally at the start of the year I was feeling 50-60% again and another virus invaded my household and again seemed to effect my gut, so its been a rollercoaster. I seemed to have recovered from the virus part, but my IBS issues are worse as is my energy, brain fog and all the other weird crap that seems to occur. I am currently looking into the Briggs protocol for UC as well as FMT as different parts to the puzzle.
Thanks for asking. How are you doing?
Those infections are getting you down!
For me – pretty much SOSB (Same old shitty baseline) not getting worse, not really getting better although I am trying out some new stuff. We have an GI blog coming out today I think.
FYI, oral CD was one of the worst reactions I had to anything. I tried to stick with it but it sent me into a POTS tailspin. I’d heard of so many that it helped. For me it was a diaster. I felt like it pushed my recovery backwards. I even had to use oxygen. It affected my breathing. Took me months to recover from that experiment. There have been people die from using it. So be careful – if you try it.
Issie
What advise can you give to those of us not financially capable of doing this any longer? I have moved 3 times now and started from scratch each time. I used to have a very well paying job for my area but was forced to resign 6 months ago, before officially being diagnosed and treated for both CIRS and Lyme. I ran out of savings. My grandparents even took out a loan for all this treatment. After I was told to do a HERTSMI2 on my current house, and then told my landlord (just me and my 12 yo son here, both hypersensitive), he just gave me an eviction notice. My unemployment ends this month, I have a disability appointment next week, but realistically, I can’t even afford to move again, let alone the costs associated with decontamination. Social services, nor the VA (I’m a disabled Veteran) can seem to help me. I have no where to go and not enough money to try. I completely understand why so many opt out….
Oh my word!!! A friend just sent this story to me and I just finished reading this. I am going through this right now. Can’t stop shaking and crying while I amtyping. I am so sick and in so much pain at the moment. I figured out toxic mold was the problem by doing tons and tons of research on my own and went to adoctor that I can’t afford but specializes in this issue..I have been to other doctors who take my insurance but know nothing about toxic mold. I am on the Canadid diet and taking a binder. Forgot the name at the moment…4 x a day. I am trying to get more professional help, but having a very hard time. I have read some ofDr Shoemakers info. My children and I did move but lost everything but our clothes…washing them in ammonia and water. The wood furniture had mold growing on it…We live in Virginia…Thank you so much for the information and the story. My life seems shattered at the moment and I am struggling, but trying so hard to stay strong. I cannot believe what is happening to us. Sorry for the typos. I don’t know what else to say right now…I have a moldy brain…
Good luck on finding a solution Sarah…
Thank you you Cort. I just sent a message and I think I acidentally deleted it..but if not, I apologize for replying twice. I have a ghetto phone and we are sort of in the mountains so the service is not the best.We are in SW Virginia.. very small town with a terrible economy, close to Martinsville…NASCAR Race Track???.. although not a fan. Anyway,The binder I am taking is Cholestyramine and my daughter is taking Chlorella. She was not exposed as much as myself . .thank heavens…because she goes to school and friends, etc..and I worked from home and there every night. I have been very embarrassed of my emotional state and lack of brain function. I have basically been dealing with this by myself. I am going to try to join a support group from the posts. I want to thank you for the story and all of the responses. This is exactly what I needed today. I have a teeny tiny spark of hope now and so many more questions. Thank you again!!! I am sure more typos but not gonna proof read..do not want to risk deleting it ago. Lord have mercy.
Sarah, Dr Mary Ackerley does phone consults. She’s an excellent Shoemaker Certified CIRS (Mold) doctor. Perhaps it would be an option:
My Passion 4 Health http://www.mypassion4health.com
CALL 520-299-5694
Mary Ackerley MD, MD(H), ABIHM: MaryMD@MyPassion4Health.com
https://www.survivingmold.com/community/mary-ackerley-the-brain-on-fire-the-role-of-toxic-mold-in-triggering-psychiatric-symptoms
Does anybody remember when then-President Obama was in Reno,,, I think near the end of his first term, approximately 5 years ago? He was asked if he could provide some $$ help with the CFS?ME situation. His reply was “I don’t know anything about it, but I will look into it? What ever happened to that promise? It should be kept.
Very important study:
https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-017-0261-y
Interesting. Thanks for sharing.
I don’t quite get a few parts of the Shoemaker protocol; those of us with OI don’t accumulate plaque in our arteries thus we don’t need cholesterol lowering meds, and vasodiolator for POTS thus LOWERING blood pressure? Hmmm. Gentamicin can be ototoxic-I’ve lost hearing from it and other antibiotics. The VIP spray sounds very good, however.
Interesting, Chris Pfeiffer that your lab test showed a genetically based problem to clearing toxins. I think this is key for all of us, whether biotoxins or chemical toxins. They can all be grouped under the heading “xenobiotics”. Here’s a slideshow explanation: https://www.slideshare.net/namarta28/xenobiotics
Cort, do you know if any CFS researchers have advocated for NIH Chemical Genomics Centre to include CFS cells in the Tox21 program? It’s kind of like what Ron Davis is doing except that instead of testing drugs to heal, it’s testing toxins that harm and they’re looking at subtypes by race and oher categories. I would think that CFS cells would be the first type of cell to test! https://ntp.niehs.nih.gov/results/tox21/index.html This Atlantic article includes a video of the lab: https://www.theatlantic.com/health/archive/2014/03/the-toxins-that-threaten-our-brains/284466/
Sarah, not sure if this is correct, but this article says that people sensitive to some types of mold shouldn’t use chlorella: https://wellnessmama.com/2719/chlorella-uses-benefits/ Cholestyramine works to lower cholesterol and bile acids – is that your problem though? Is your blood pressure high or slightly low? Have you tried second generation antihistamines like Reactine or (natural) Quercitin? And given up refined carbs, and anything with hormones, antibiotics, pesticides? Issie, myself and others have had good results with high choline foods. Soft (organic!) eggs are very high in choline. I avoid unripe nightshade foods like the plague and limit ripe nightshade foods and anticholinergic drugs.
Deviated septum – hmm. I developed that and my ENT insisted it was always there cause he’s never seen anyone develop it. I know though that I could always breathe while lying down on my side until about a year ago – it definitely developed. I have some EDS genes, but I’m not hyperflexible. I’d love for CFS researchers to do a survey on how many of us have connective tissue issues and whether our skin, blood/brain and gut mucosal barriers are compromised.
Hi LY!
The cholestramine is apparently *quite* poor at lowering cholesterol, but excellent at removing biotoxins. So that’s why it is used.
What vasodilator are you referring to? In my case, blood pressure *is* elevated.
There are options other than Gentamicin (BEG spray), if it is problematic for you or others… For me, luckily, the BEG spray worked well to treat MARCoNS.
Dr Shoemaker’s free FAQ http://www.survivingmold.com/free-faq-signup and my Mold/CIRS 101 have further info about the protocol, if interested http://tinyurl.com/moldcirs101
Thanks for reading!
Hi L – I agree that I think most of us with this disease have collagen issues and toxins are getting places they shouldn’t. I would almost guarantee it.
A remarkable story of a true “Mold Warrior”.
Hi Chris,
I’m so glad that you’ve had success in overcoming your bad bout of ill health. Thanks very much to you and Cort for sharing your story in detail. Very sorry you’re going through a divorce on top of everything. Situations like these really force us and our family members to dig deep and ask ourselves what we want in life and what’s really important. Your resilience and positive outlook is such a great example for your children.
Thanks for replying in detail. Losartan opens up blood vessel walls (vasodilator). I’m trying to understand how you have orthostatic intolerance and high blood pressure. OI and POTS are due to blood vessel walls being prone to opening up too much, called by some doctors “poor venous return” or “venous insufficiency” (VI). The heart can compensate by pumping faster, leading to high blood pressure in the veins. I’m wondering if Dr. Shoemaker would recognize if VI was your underlying problem and if so would your treatment be a little different. https://my.clevelandclinic.org/health/articles/chronic-venous-insufficiency I’ve found a number of ME/CFS doctors have this piece missing in their education. They assume that it’s high cholestoral that causes high blood pressure. They recommend less salt rather than more salt which is what’s needed to help VI. I note Dr. Shoemaker did recommend electrolytes. (Coconut water is a great source of electrolytes, by the way.)
I have this little theory after meeting a lot of ME/CFS patients who also have Ehlers Danlos Syndrome or other connective tissue disorders and watching the work of Dr. Peter Rowe who specializes in ME/CFS and EDS. My theory is that there’s an underlying vulnerability due to faulty connective tissue and things like mold, harsh chemicals, viruses, etc. can throw off our homeostasis to a greater or less degree. A group of Ehlers Danlos societies have come up with a new nosology that has a whole section recognizing CFS, but it’s of no help biologically. They treat it as a psychiatric issue and prescribe cognitive behavioural therapy and exercise.
Gentamicin – it really worked for me too. And I didn’t realize it caused me to lose some hearing until years later. Have you had a hearing test recently? Do you find yourself sometimes asking people to repeat themselves? When I got married my husband insisted I go for a hearing test. I was offended and went to “show him” my hearing was fine. I was floored to find I needed a hearing aid. Then again, sometimes the hearing loss is temporary. My ENT told me that sensioneural hearing loss is a matter of genetics, but he didn’t tell me or didn’t know that it’s a genetic predisposition to the ear being vulnerable to damage. Here’s an explanation of ototoxicity: http://vestibular.org/ototoxicity
Big hugs and much support to you and your family!
LY,
No hearing loss. Sound sensitive, though.
The high blood pressure is apparently a combination of things: clotting factors (sludgy blood, although I didn’t pay to have vonWillebrand run), inflammation, small veins, deconditioning, poor hydration, brain damage… Glad it’s high vs low, means treatments like losartan work well for me and don’t have the classic POTS issues. Coco water is great, but $$.
Best of luck!
Chris, I have HyperPOTS, and appears many of us with that type have higher blood pressures. I too find vasodilation necessary. As for “sludgey” blood – get checked for APS. You need to know. I was positive on one of the 3 markers (Lupus Anticoagulant). Taking things (herbs) to thin my blood is very helpful. And as another person commented about me – things to up acetylcholine a great benefit.
The Lorsartan has worked for other HYPERPOTS people if they don’t have an issue with renin and aldosterone already being too low. I do, and it didn’t help. Made me worse. Lorsartan also helps to increase your potassium. I found that a calcium channel blocking effect of my MCAS and POTS med (GastroCrom and Tramadol) probably is what helps my higher BP and all my symptoms. I don’t want to completely block or eliminate this “symptom” as its probably a compensation response.
Issie
What herbs are you taking again, Issie?
@Cort I mostly use Supreme Nutrition products as my herbs. I’ll list them, but this won’t be right for everyone. Some of these have mold and parasite clearing actions. Others for thinning blood.
Supreme Nutrition products:
Bodyguard
Hemoguard
Reishi
Scutellaria
LuRong – a form of glucosamine helps pain
I use enzymes to help with inflammation and to thin blood – also helps breakdown biofilm:
Serrapeptase
Repair by Enzymedica
Vascuzyme by Empirical Labs
Fish oils and DHA from plant source also helps not only with pain – but brain function.
Things to help with acetylcholine:
Huperzine A in am
CDP Choline in pm
Gota kola in am
Pregnenolone 10 MG – can be upped to 30 MG if needed – I do better on lower
Cruciferous vegetables with DIM in am – Life Extension
I take some other vitamins and minerals – but not daily. D3, MethylFolate, magnesium, zinc.
Another help for energy and general sense of well being:
Jiaogulan – I use Majestic herbs brand
I also use Milk Thistle and drink lemon water to help with liver function and parsley to help with kidney function and that also has Luteloin that helps with allergies.
I rotate things and give breaks as necessary. You can build a tolerance and they will stop working.
I also address known methylation issues. But have been able to get off alot of these as I must have things working better and don’t seem to need them. (Molybedum, yucca, methyl B12, Methyl Folate, P5P, R5P)
I add turmeric, ginger and cinnamon to my coffee with lots of full fat coconut milk and stevia. This helps pain, helps manage protozoa and parasites, can kill cancer, helps manage mold/bacteria and taste good. I intermittent fast with this as my morning source of energy. It will get you through the morning.
I maintain thyroid health with Kelp and selenium.
Blood sugar balance – occasionally GTF chromium.
Rotate nightly probiotics:
iFlora
Prescription Assist
I try to use alternative treatents first. But there are times when medicines are necessary. I don’t use all of these at once. But rotate between them and I don’t use everything every day.
There have been many more trials on things that didn’t work out. These are the things that seem to work for me, at this moment in time. Things change and will become unnecessary. Pay attention to your body and decide if you are having a herx or a full out allergy. Sometimes, it gets worse before it gets better. Don’t throw away things – you may come back to them later.
I usully don’t list what I use as what works for me may be wayyyyyy wrong for someone else. But, here it is – maybe it will give some other alternatives.
Supreme Nutrition has a very good write up of their products. You can read and get a sense what is right for you. Try to not use more than 5 herbs at a time. Have to be careful with what you combine. I order from a guy on eBay – his store name is jankdc.
Issie
Thanks for doing all that! Congrats on getting better as well. 🙂
Here’s a link to Supreme Nutrition.
http://stores.ebay.com/jankdc/Supreme-Nutrition-/_i.html?_fsub=15816830018
Chris, In your story you mentioned jaw cavaties when or where your wisdom teeth were taken out. I had a lot of dental problems while I was still in the moldy house…without knowing about the mold yet. I have beatuful teeth that I took care of. Never had a cavatiy ever ever or braces. My wisdom teeth were I am had no issues. They somehow started problems .had a 4 taken out. Soon after another got infected .lost that one then another. I had a hard time clearing up the infection everyone before surgery and after. I was on several different antibiotic s for 4 months straight. Another tooth again out of the blue. By then I knew it was mold with all the other health issues. Think the would dental stuff came from recovering with open wounds and stitch. .also my hair was falling out very fast. Was down my back so had to to cut it. That hurt my feelings.Bad
Sorry for the typos again. I really such at texting and technology in general. Any idea about knots showing up on your body .very sore and swollen and sore lymph glands? Left soon after I moved out but came back this week. I had a major setback this week..I think I know why but not sure. I’m almost as bad as I was in the beginning. Been out of moldy house a month. On diet and took binder of 2 weeks. Off for 2ish weeks and now..ugh..
Not sure about lymph glands. Best of luck!
You may be referring to Trigger Points.. Which present as knots in your muscles, that HURT like hell!! In Fibromyalgia, they are mirrored in the body… What you have on the R/side of the body, you will find on the L/side of the body. It’s a BIG difference if it’s IN YOUR LYMPH GLANDS!! That could be presence of Cancer. Do NOT ignore! Plz go to the MD and let them palpate (feel/touch) your body.. And map the knots. That’s how I got diagnoses!!
Sarah, I don’t know if you know of this or not. Here’s the latest I posted on it. (Ignore my supplement list – I copied from here in case someone who read that thread only – wanted to know.) It can cause tumors (it was found in my thyroid biopsy.) I also have nodules on me (they are calling lipomas) and they are sore to touch. At first Dr FRY called this organism Protomyxzoa Rehumatica – but now is thinking it’s more mold/fungal like.
https://www.healthrising.org/forums/threads/dr-stephen-fry-and-protozoa-my-life-is-greatly-improving.2122/#post-28681
Here is another blog site with several of us talking about this. (Again overlook my repeat info on there.)
http://www.ladyoflyme.com/blog/protomyxzoa-fl-1953
Hope this helps.
Issie
Some have issues with what is called cavitation. It’s around, under the tooth and in the bones sometimes. It happens a lot of times when teeth get extracted. A guy who was helping me in my journey suggested I get checked for it. I guess there is a special type dentist you need to see to address this. He used ozone therapy around his gum. Not sure what all else but it seemed rather intense and possibly expensive. I had wisdom teeth out and other teeth out for braces as a teen. It can actually be there for years and cause issues. I called one doc here in Phoenix that does this, he didn’t take insurance. It was going to be a very expensive endeavor. So, I haven’t addressed it. I hear a lot of people with mold exposure, get cavatations and start to have a lot of issues with their teeth.
Issie
Issie – I just went to a biological dentist named Dr Krizman in Tucson (recommended by Dr Ackerley) to deal with my wisdom teeth extraction sites. We did a 3d cone beam ct scan with her special equipment and it showed bone density issues on my upper wisdom teeth extraction sites. I’ve had her do one special ozone treatment so far. She’s apparently had good luck with folks’ bone re-growing. The hope is that there will then be less chance for infections, including MARCoNS.
Some people with more major issues *may* need cavitation surgery, I hear. But ozone is a cheaper, less invasive way to start. That’s my 2 cents. I am by no means an expert.
Thanks for the info Chris. I plan to ask my dentist about it next month and see if she can tell anything or know who, closer by, I may see.
Issie
I got good news today……my brain menigioma is shrinking. The mold that was found in my thyroid biopsy was said to cause tumors. I wonder if that’s what caused my brain tumor. Will be interesting to see if the multiple thyroid tumors I have are shrinking too. Will find out next month. Will hold to my herbal and detox course. Things are looking up. Yayyyyyyy!!!!!!
Issie
Chris I noticed you didn’t really mention underlying infections in the gut or other parts of body. Have you had this problem? This was a big thing for me. After doing a lot of the things you did and still not completely feeling myself I did a test with Dr Amin in Scottsdale and a test with ubiome.com and parasites and candida overgrowth was found. Did you have this problem? Now that I am treating my gut I have gone leaps and bounds into healing.
Kim – My ubiome and other gut testing looked ok. I’ve had some gut issues for sure, but nothing like what others have dealt with. Lucky.
Other things checked: hair mineral analysis, dental issues, etc. Long list of tests…
Cort, this makes me wonder whether there need to be changes to construction codes in places prone to flooding (e.g. no wood at low levels) or whatever else is necessary that moulds just can’t get such a strong hold in the first place.
It also makes me think that landlords should not be able to let properties with mould issues until the mold is professionally dealt with.
I had ME pre any mold issues but know mine has been a lot worse since spending six months in a flat with a fairly modest mould problem. I developed alergic asthma and ME my has been worse ever since.
Some good news – My 3rd neuroquant MRI showed I’ve apparently regrown a lot of “white matter” in my brain in the last year, by following the Shoemaker Protocol. It is really not good to lose white matter, so to get a significant portion back is pretty amazing.
Fabulous news, Chris! One of my biggest concerns related to CIRS is brain damage. I already know I have it, it is a question of how much. I hope to get a Neuroquant done. I’m guessing insurance won’t cover it and it’s another huge out of pocket expense?
Cheryl it depends on your insurance. I had MediCal initially in San Diego and opted just to pay 400 cash for it and bypass the molasses-slow process with MediCal approval/denial.
Here in AZ, now on Medicare, I just paid 60 bucks for my 3rd Neuroquant.
I’m wondering if there are certain symptoms more prevalent in people whose ME/CFS has a strong mold sensitivity component? Just read “Through the Shadowlands” and was struck by the terrible paralysis Julie experienced. It certainly seemed like a toxic reaction. Wonder if this symptom is more common in people who have found that reducing mold exposure helped them?
Helen. I helped create Julie’s website 😉 We are now working on her audiobook.
From Dr Shoemaker’s site (http://www.survivingmold.com/mold-symptoms) common symptoms of CIRS (mold illness) include:
♦Fatigue ♦Weakness ♦Aches ♦Muscle Cramps ♦Unusual Pain ♦Ice Pick Pain ♦Headache ♦Light Sensitivity ♦Red Eyes ♦Blurred Vision ♦Tearing ♦Sinus Problems ♦Cough ♦Shortness of Breath ♦Abdominal Pain ♦Diarrhea ♦Joint Pain ♦Morning Stiffness ♦Memory Issues ♦Focus/Concentration Issues ♦Word Recollection Issues ♦Decreased Learning of New Knowledge ♦Confusion ♦Disorientation ♦Skin Sensitivity ♦Mood Swings ♦Appetite Swings ♦Sweats (especially night sweats) ♦Temperature Regulation or Dysregulation Problems ♦Excessive Thirst ♦Increased Urination ♦Static Shocks ♦Numbness ♦Tingling ♦Vertigo ♦Metallic Taste ♦Tremors
Update – Happy to report I competed in a bike race last February and am now working two jobs and doing much better! I’m now the Co-Executive Director of the International Society for Environmentally Acquired Illness and we hope to help as many patients as possible…
ISEAI is a nonprofit professional medical society that aims to raise awareness of the environmental causes of inflammatory illnesses and to support the recovery of individuals affected by these illnesses through the integration of clinical practice, education, and research.
Feel free to reach out at cgraber@iseai.org if you have any questions.
Congratulations Chris! Thanks for reporting back.
So nice that you landed at and I presume helped start the ISEAI