I can’t even.

I’m in a bad headspace. Feeling overwhelmed and hopeless, like I just need to give up. I know what sparked it. I got a bunch of blood tests done — things I haven’t had tested in 1 to 3 years — and they’re all still a mess. I’m still a mess. I haven’t made any headway in years. I just feel defeated. There are so many things my body is fighting and either I’m not helping or nothing I do helps. But mainly I feel useless and inept because I can’t manage to research something thoroughly, plan an attack and implement it. I can’t commit to anything because I have no faith that anything will work. So many pills. So much money. So much effort. So much information to process. So many competing theories. So much time scrambling in one place, getting nowhere. I do nothing but read how to help myself — hours everyday for years — and I just wind up feeling like I’m drowning more and more because there is too much.

I can’t seem to manage a methylation protocol, or a detox protocol, or brain retraining like everyone else can. Or a liver cleanse or lymph drainage or help my leaky gut or what about parasites? I can’t seem to manage any diet changes: watch out for histamine, salicylates, oxalates, sulphur, tyramine, too much/too little protein, too much/too little fiber, too many carbs, not the right kinds of fat, dairy, sugar, mycotoxins, pesticides, chlorine/lead/chloramine in water, your tupperware is plastic, your pots and pans are killing you… it never bloody ends! And why does everyone do so well with physical therapy, acupuncture, myofacial release, Bowenwork, craniosacral, reiki, feckin Feldenkrais and nothing seems to work for me? I’m thinking about NAET and muscle testing, frequency machines, homeopathy and EMF sensitivity because what if?? But I know they’re all just black holes. Everyone has a magic pill or a serious warning: Don’t sleep on foam! Don’t go in a hot tub! Your milk must be raw! Your dogs are killing you! Don’t stretch if you have EDS, don’t spend too much time lying down if you have dysautonomia, enemas are wiping out your good bacteria, you probably have Lyme–go on antibiotics, the longer you wait, the worse it is! You definitely have mold because you live in Seattle–leave your house and possessions behind and get clear! I’m so over all of it. There’s no point in giving me advice to just tackle one thing at a time because I can’t. It doesn’t work that way. Time is slipping by; I’m getting older just sitting in one spot. Everything is connected and as soon as I decide to do one thing, I read how that can tip another thing out of balance and I freeze… and wind up doing nothing. My brain does not work like it used to. This is most frustrating of all.

Imagine you’re suspended halfway up a cliff face, trying to get to the top. You’ve spent months researching the best path to take and you have some energy, you’re ready. As you start to climb, people abseil past you, screaming, “Don’t go that way! There are perils up ahead!”
Then others beside you say, “Nah, this is definitely the best way, they don’t know what they’re talking about.”
Then other people all around start chiming in and you listen–while clinging on to the crumbling rock for dear life–because so many have made this climb before you: “If you want to get to the top, go left.” So, you start researching that path.
“No, go right.” Better check out that option.
“It doesn’t matter which way you go if you don’t eat this meal first.” Oh shit, glad I didn’t start climbing yet.
“No, doesn’t matter what you eat or where you climb, you’re fucked if you’re not wearing the right gear.” Energy is draining out of you and the fear is creeping in.
“Don’t be silly, you just need to spend all day every day telling yourself you can get to the top and you will.”
“Nope, actually this mountain is insurmountable when you’re as weak as you are. Just hold on as long as you can and hope that you get stronger before your grip gives out.”
And… I literally can’t even.

Screenshot_2016-03-22-23-30-02-1-1

Anyway, I pretty much want to burn every book I own, cancel all my appointments, throw out all the supplements and extricate myself from every group and forum, go to bed and give up… and, if I’m truthful, it’s all sugar’s fault. I have a grade A, deep-seated, fully-in-denial addiction and my candida blood test came back twice as high as the high result from a year ago that I ignored. Or at least candida IgM did and that’s the antibody that shows active/acute infection, right? I don’t want to go on another elimination diet. I don’t want to deal with something that will apparently keep rearing its fungal head forevermore every time I eat some ice cream. I don’t want to take prescriptions for months and deal with die-off and herxing for weeks. I just don’t. Even my husband is clanging a warning bell about candida, gently encouraging me to just try to quit eating sugar temporarily and I’m like a petulant child. I hardly eat any compared to the old days! I’ve given up so much! And then I ate a bag of kettle corn while pouting. This is waaaaaaayyy harder than booze and cigarettes. Way harder than gluten, dairy, nuts or anything I’ve tried before.

So there’s that. And then there’s these:
Cholesterol and LDL are higher than they were 8 months ago.
CMV IgG, which has been negative 4 times in the past, is now high out of range.
HHV6 IgG is still high out of range.
Mycoplasma Pneumoniae IgG is higher than it was (out of range).
EBV IgG is much higher than it was (out of range).
Sex Horm Binding Glob and Estradiol are high, whatever that means.
Total IgA and one IgG subclass are low.
VItamin D and Vitamin B12 are both low.

I’ll be talking to my doctor about all this in a fortnight, stay tuned.

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Dr. Joseph Brewer and Mycotoxins

I have had the Real Time Labs mycotoxin panel done and had high levels of Ochratoxins, Tricothecenes and was at the very top of the reference range in Aflatoxins. This blog post from Chris over at CFS Patient Advocate summed up an interesting study and outlined a possible new treatment direction for me to explore.

CFS Patient Advocate

Sunday, March 30, 2014

Dr. Joseph Brewer and Mycotoxins, an update

Dr. Joseph Brewer of Kansas City was one of the physicians who did not attend the recent IACFS/ME conference. Dr. Brewer is an infectious disease doctor who has been working with AIDS, Lyme and ME/CFS patients for a very long time. Over the years he has become interested in various treatments for ME/CFS – and has been open to thinking about associated subjects such as Mitochondrial impairment (or down regulation) or Mycotoxin involvement – to describe two of his recent interests.

About two years ago now, Dr. Brewer stumbled upon Mycotoxins and their potential involvement in ME/CFS. Dr. Brewer and his associates, Dr. Thrasher and Dr. Hooper, published their first paper on Mycotoxins and ME/CFS in April 2013. It can be view here. In this study, Dr. Brewer reveals finding 93% (104 of 112) of his patients positive for one of three mycotoxins (there are hundreds of mycotoxins) through a test at Real Time Labs in Carrollton TX. Zero of 50 controls tested positive.

The Real Time Labs test is a urine sample for Ochratoxin A, Aflatoxin and Trichothecenes (MT). (Real time labs will soon have a blood test for gliotoxin, a mycotoxin associated with Aspergillus.) The initial test costs about $700 and appears to be partially reimbursable. On Dr. Brewer’s initial study Ochratoxin A showed up the most, although a good number of patients had more than one and some had “the trifecta” – of all three. Dr. Brewer feels that mycotoxins are not good for patients to have in their bodies –  and that they represent a major factor in their ME/CFS illness.

Dr. Brewer reports that these mycotoxins impair mitochondria function and interfere with cell membranes. Loss of mitochondrial function can cause detoxification problems with other toxins. Poor detoxification might have something to do with clinical response.

Dr. Brewer’s previous experience with mold or mycotoxins was non-existent. He is an infectious disease doctor who looks for bugs and tries to kill them. In no way can Dr. Brewer be described as a “mold doctor”.

In December 2013, Dr. Brewer, Thrasher and Hooper published a second paper on Mycotoxins and their connection to chronic illness – “Chronic Illness Associated with Mold and Mycotoxins – Is Naso-Sinus Fungal Biofilm the culprit?” In this study they laid out their case based on examination of existing literature, citing case studies.

Faced with this high percentage of his patients with potential mycotoxin involvement, Dr. Brewer was both surprised and perplexed. He began treating some of his patients with heavy duty anti-fungal infusions. In time, again through researching the literature, Dr. Brewer concluded that the most likely reservoir for the mycotoxins was the sinuses. This involved a bit of guesswork. It is Dr. Brewer’s thesis that these mycotoxins get into the body and colonize in the sinus. Once colonized and protected by a biofilm, the body cannot get at them and they just stay there forever. It is his belief that they have to be rooted out. He finds in his patients that the exposure can be from the distant past, up to 20 years ago. From Dr. Brewer’s point of view, focusing on the sinuses in no way excludes other reservoirs harboring the mycotoxins – the gut, stomach and lung.

Dr. Brewer began treating his patients with nasal Ampho B – and he started getting results. Dr. Brewer works with a nasal drug delivery company called ASL pharmacy. They have a nasal delivery system called Nasa-touch which atomizes the medicinals. In time Dr. Brewer added another nasal drug to bust up biofilms that he believes are harboring the mycotoxins. This is nasal EDTA in combination with surfactant, an ingredient in Johnson’s Baby Shampoo.

Two side effects of this treatment are noted. One is that the Ampho B can cause nasal irritation and even mild nosebleeds in a few cases. The second is that the treatment often causes a strong herx reaction as the mycotoxins are exposed and the drug kills them. In both situations, Dr. Brewer moderates or cuts back the treatment and all cases have been manageable.

Dr. Brewer has been surprised, astonished really, by the results of treatment. In his first 100 patients treated, 70% showed improvement, including six whose symptoms completely resolved, including all symptoms of their larger illness.

With treatment, the successful patient’s urine Ochratoxin A will go down to zero in a matter of some months. The Trichothecenes (MT) takes longer but it too will diminish with treatment.

Three quarters of the patients treated had preexisitng sympotms of sinus problems. One quarter did not. Both segments showed equal improvement.

Dr Brewer has continued testing and treating more patients. He has now tested 350 patients, 325 of whom are positive for one or more mycotoxins. More Trichothecenes (MT) have been showing up recently in his patient population. He is now treating up to 200 patients and I believe another paper will be coming out soon. Dr. Brewer reports that those patients who have fully resolved and ended treatment tend to relapse and have to go back on treatment.

Dr. Brewer’s absence at the recent IACFS/ME meeting has already been noted. How could this happen? How could the emergence of a target for treatment not be acknowledged at this conference? This is all the more unusual in that Dr. Brewer published his first paper a year ago and then gave an exciting presentation at the Lyme conference in October 2013. In this situation, there seems to be a target, a treatment that is relatively benign – and Dr. Brewer is getting results. Doesn’t this warrant more attention? Wouldn’t it be interesting to find out what is happening here?

Of course, in spite of this, there was quite a lot of discussion of the subject of Mycoyoxins in the hallways of the IACFS/ME conference.

Regarding mycotoxins and ME/CFS we have to ask some questions. The most obvious one concerns the validity of the testing at Real Time labs. At the moment this seems the only lab that does mycotoxin testing. Dr. Ritchie Shoemaker has not been overly excited with this test, or with the idea of nasal colonized mycotoxins. If it isn’t mycotoxins that are being knocked out, what is the activity of Dr. Brewer’s treatment? A 70% response rate of over 100 patients is impressive. Dr. Brewer himself says that he has never seen such success with a single treatment.

Meanwhile other physicians are beginning to test their patients. A West Coast physicians group has tested over 100 ME/CFS patients for mycotoxins at Real Time labs – and are getting the same high positive results. Preliminary reports on Dr. Cheney’s testing of his patients also indicates a high positive response, especially for Trichothecenes. Even Dr. Ian Lipkin indicated that mycotoxins were dangerous, and warranted looking at in ME/CFS. Other physicians, Dr. Chia, and Dr. Enlander, are aware of Dr. Brewer’s work and have been encouraged to test their patients. 

Diets Part IV: Low-Histamine, Mold Diet, Migraine Diet, AIP, Low-Sulfur and SIBO.

Well, the uptick in stability I mentioned in my last diet post has gone away. My daily headache is back, my heart rate is back up (not too high, but not the super-low it was), my muscles are worse, my blood pressure is all over the place, and I’m far more exhausted and dizzy than I was in January and February. So, back to normal!

When we last spoke, I was on a low-histamine, pretty much paleo diet (allowing rice), plus no eggs, citrus, nightshades or soy. I had a mycotoxin panel done and, in rare abnormal test results, found I had some very high levels in my urine. While researching mold toxicity, I found the “mold-free diet“. I was pleasantly surprised to see it was pretty much the same as the low-histamine diet and I was already following it. I was also dejected to learn there was another reason for me to continue avoiding all of these wonderful foods and bending over backwards to not consume leftovers.

Grass-fed, pastured beef sirloin and braised red cabbage from Nom Nom Paleo (click image for recipe).

Grass-fed, pastured beef sirloin and braised red cabbage from Nom Nom Paleo (click image for recipe).

Looking for help for my constant daily headaches, I came upon this article in the NY Times, called, “The Migraine Diet” (list is here). Judith Warner says, “I stopped drinking caffeine and alcohol and stopped eating chocolate, cheese, M.S.G., nuts, vinegar, citrus fruits, bananas, raspberries, avocados, onions, fresh bagels and donuts, pizza, yogurt, sour cream, ice cream, aspartame and all aged, cured, fermented, marinated, smoked, tenderized or nitrate-preserved meats.”

Hmm… Well, yet another reason not to eat dairy, gluten and aged, cured and fermented foods. But I really didn’t want to entertain the idea of life permanently without onions, raspberries, bananas and citrus fruits. Plus, I was still drinking my cup of black tea every morning and eating nuts and some sugar. My three loves. Maybe I would ignore the migraine diet recommendations and just take some Tylenol. Maybe I will revisit this down the road.

I decided, since I was almost there anyway, I wanted to give the Autoimmune Paleo diet (AIP) a chance for a month or two and see if it made any difference to anything. My vitilgo is not a big deal, my autoimmune urticaria and angioedema has not been an issue in a few years (knock on wood), but my thyroid is an ever-present problem and ME could have autoimmune roots, so I wanted to give it a try. AIP basically involves no grains, dairy, legumes, nuts, seeds, nightshades, eggs, caffeine, sugar or processed foods. It was designed to be a temporary elimination with reintroductions after the initial strict period, although some people seem to stick with it forever. I mope-ily removed nuts and seeds from my diet last month and was gearing up to kick rice, tea and coconut sugar to the curb when my research into the methylation cycle led me down a side road to a low-sulfur diet. Hold everything.

No nuts or oats? My new snacks: plantain, parsnip, sweet potato and beet chips.

No nuts or oats? My new snacks:
plantain, parsnip, sweet potato and beet chips.

My 23andMe results (I’ll go into this in more detail later) showed I have a CBS mutation. Some doctors (most notably Dr. Amy Yasko) maintain that one must deal with this “first priority mutation” before embarking on a protocol to unblock the methylation cycle. The CBS, plus two BHMT mutations, means I may have excess sulfur groups, which deplete molybdenum and BH4 and cause high taurine and high ammonia levels. I know from test results that my ammonia levels are high, so this is something I wanted to address. Working on methylation is a very long process- probably a year or two- so, if dealing with the CBS mutation is the first step, I wanted to get the show on the road. Suggestions are to eat a low-sulfur diet (my research indicated that animal protein was not as much of an issue as high-sulfur/thiol veg), so I omitted garlic, onions, most cruciferous vegetables and leafy greens and I stopped my epsom salt baths. This was hard, but I thought, It’s only for a month or so. While continuing to keep out nightshades and high-histamine foods, my allowed vegetable list was: artichokes, beetroot, carrots, celery, cucumber, lettuce, parsley, parsnips, squashes, and sweet potato.

Juice with allowed low-sulfur veg: beet, carrot, celery, cucumber, apple, ginger.

Juice with allowed low-sulfur veg:
beet, carrot, celery, cucumber, apple, ginger.

I started this at the beginning of March … aaaaannndd then I got my appointment with the medical nutrition therapist who was not only recommended by my doctor, but also by someone on one of my Facebook histamine/mast cell groups. Another side road.

The appointment was an hour and a half and she went over my symptoms and my food diary (note to self: edit your personal, private food diary before giving it to your doctor so it doesn’t say things like “want to vom”, “fight with D” and “bad poop” 😉 ). She said coconut was very high histamine which threw me for a loop since half my calories come from coconut in one form or another. I debated this fact with her for a while and eventually she said, “You’ll just have to trust me on that.” She also thought I might have a problem with salicylates, which I guess I eat in copious amounts. Joy. And she was concerned about SIBO: small intestinal bacterial overgrowth. As you can imagine, at this stage I really want to dump my diet decisions into someone else’s lap, so, while I still have health insurance that covers her service (for another few months), I am going to trust her and give her plan a fighting chance.

I am currently on day two of the SIBO test prep diet. I am only allowed to eat meat and rice for two days (if I’d already eliminated rice, I would only be eating meat, so thank god I procrastinated). Yesterday, I ate turkey, lamb, clear beef broth and rice with butter. Real delicious fatty decadent Kerrygold butter, for the first time in a year and a half. Butter is heaven. But no sweet treat after a meal is hell. I only eat a bit of chocolate or fruit or homemade coconut ice cream, but, judging from my extreme irritability, it is a very real addiction. I’m even salivating at the thought of a lozenge. Having an ever-present sore throat really makes lozenges a necessity!

SIBO prep meal

SIBO prep meal

I was secretly hoping that I would feel great these days on such a limited diet and it would spur me on to continue my food elimination experiments. Unfortunately, I am headachy, weak, sore and have zero appetite. Could it be the butter? Maybe, I guess, but I don’t think so. It might be because I washed my hair yesterday. It might just be ME.

In the next installment, I will tell you about my ketoacidosis scare and the strict low-histamine + low-salicylate diet that begins next week. I know you are all on the edges of your seats!

A tip from my Facebook friend, N., to excite my SIBO prep diet: Crispy waffle iron rice! (click image for recipe)

A tip from my Facebook friend, N., to excite my SIBO prep diet: Crispy waffle iron rice!
(click image for recipe)