My Story – Pt1
In December 2000, I nearly died. I lost weight down to 43kg (95lb) due to severe gut problems and multiple surgeries, which all led to the downward spiral of CFS/ME (Chronic Fatigue Syndrome), Fibromyalgia & MCS (Multiple Chemical Sensitivity).
[Me and my brother Jamie – Christmas year 2000 @ 43kg]
But first, let’s rewind a bit. I had always been one of those ‘allergy kids’. In fact I was born with gut probelms. Soon as I was put on ‘normal food’, I suffered colic (cramps), constipation, rashes, hives & other allergies. Through childhood I suffered more of the same, developed more food intolerances plus asthma. I was still an active happy kid otherwise. I participated in many physical activities with ease. i.e. I’d often come first in things like 100m sprints etc, and was second nature to be able to easily land flips, vaults and somersaults in gymnastics / martial arts etc.
As a teen things got worse, and was diagnosed with IBS (Irritable Bowel Syndrome). Suffered regular headaches, palpitations & ectopic heart beats. These were worst often after strong foods such as Indian, Italian (concentrated tomato sauces/pastes), or spicy Thai/Chinese etc. I would often be on the bed writhing with gut pain or other above mentioned symptoms after going out to eat (worth it to me at the time!). Also broke out in a variety of weird allergy spots and acne at about age 15. This was very frustrating not to mention painful when flared up. One of my friends laughed frequently because I would explain I was taking paracetamol (Tylenol) for an ‘itchy back’ (was very conscious not to show the spots covering it, not allowing me to sit back on a chair or lay on my back in bed!)
[Oh my loves that are thus unkind to me! Such sweet sorrow]
Despite all that, it was intermittent. I did not have fatigue or muscle pain, and was quite a strong teen. I had full energy day & night, pushed weights 5-6 days a week & did various different martial arts. I rode the bike for many kilometers, often to the beach where I’d body board or go diving for hours, which I loved. I could spend whole days at the beach going non stop, then bike home another 5-6km’s. 100 push ups & 100 sit-ups were no problem even on days where I’d done many of the above activities already.
[One of my lifelong heroes, Bruce Lee]
I had no idea back then, but the majority of the symptoms I was getting were due to serious food & environmental intolerance & allergies. I now know that a vast majority of people’s general day to day health reactions and symptoms are also due to this. Back then I just thought it was normal for me to live with weird intermittent pain and those other symptoms. I was too busy enjoying life to make the connection, or care that much to look too much into it.
I got appendicitis at age 19, and had it removed. Although it wasn’t too inflamed, they found a carcinoid tumour on the end of the appendix, which causes 1 in 300 cases of appendicitis. So it was good it got removed.
At age 20 I developed SVT (an arrhythmia called Supra-Ventricular Tachycardia). I was at a friends place in Sydney one night after we had about 6-7 refills at a trendy cafe of somewhat rocket fuel powered coffee. This is what triggered my SVT for the first time. My heart sped up to I would guess about 250+ bpm while I was trying (very unsuccessfully due to hard caffeine spike) to sleep. I thought I was having a heart attack or something.
They took me to Royal North Shore Hospital. I was in for 3 days or so, and had an EPS (Elecro physiology study). With this they found an extra pathway in the heart’s electrical circuit. They proceeded with a radio-frequency ablation, to burn the pathway off. I was kept for an extra day after that, then discharged. I walked out of the hospital and walked several kilometres plus train rides to get back to my friends place.
After being there for only an hour or two, I got ANOTHER episode of SVT! I could not believe it. I got my friend to take me back to RNS, and went straight up to the cardiac ward, found some of the Dr’s I had been dealing with, and told them. They sat with me and explained that I could not possibly be experiencing SVT again because they had fixed it, and I needed to get some “therapy for anxiety”. I was like oh man.. seriously, there is a big difference between ordinary anxiety and a serious arrhythmia & HR of 250+ BPM.. They didn’t think it could be SVT as it had been fixed only days ago.
I went up to stay with my parents for a few months to try to recover. I think I had about 15 episodes of SVT during a 3 month period, before the RNS in Sydney finally agreed to redo the Electro physiology study to re-check the pathway. Lo and behold, they found the pathway was still active (suprise). They said oh it must not quite have been burned off properly last time. After they burned it off the 2nd time, I haven’t had an episode of SVT ever since, thankfully. Can’t blame them though, it’s rare not to work the first time. Perhaps my pathways are furiously super-powered.
I got back to my life in NSW, working about 30hrs a week in an active job (up and down large ladders lifting business machines, computers and so on) and studying full time simultaneously. So again, I was still strong and had full energy, but continued to have the previous gut & allergy symptoms I’d had for life so far. Finally, a new Dr I saw, a very wise old Indian Dr, who became my new permanant GP, told me I should try going off gluten. I had been living on wheat/gluten: bread, sandwiches, toast, cereal, pasta, you name it (as everyone did) every day.
For most of my life so far at 21yrs old, I had woken up most days (apart from rare patches), curled up with severe gut cramps/pain for the first 1/2-1hr of the morning, before I got going, which was just normal for me. When this Dr told me to try going off gluten, within 2 days of eliminating it, I woke up with no pain at all, it was quite amazing. I noticed so much less cramping and IBS symptoms so fast. I also got rid of dairy at the same time which helped even further (had also been dairy intolerant for life but ‘ate it anyway’ because it was such a normal part of family diet).
However, I was already developing other symptoms at this point. I was becoming intolerant to more and more foods. Coffee started to make my brain feel very spaced out instead of delivering the usual caffeine jolt of life to my body & brain as it had for so long. So, I had to give up my beloved coffee as it only got worse. I developed unstable blood sugar (reactive hypoglycaemia), and craved sweets and carbs terribly. I would constantly buy sweet muffins or cakes, even after big meals, and I seemed to always be hungry. Biochemistry was starting to get out of whack.
During the year 2000, I started getting strange dull upper abdominal pain. I didn’t know what this was, but ended up being gallbladder/liver and pancreatic pain. While mild at first, as the year went on it got worse and worse. I tried to ignore this for quite a while, just taking OTC meds to combat the symptoms and ‘get on with life’. Near the end of the year however, it was so bad that I was waking up in the middle of most nights in agony, with stabbing pain under my right ribcage (gallbladder). I discovered the only way it didn’t hurt dreadfully was if I only ate fruit. So yes that’s absolutely what I did, as the body demanded.
Being a massive noob & not knowing much at all about nutrition or health at that stage, I was only doing what I felt was helpful for my body (i.e. not causing traumatic pain). Only eating fruit and some vegetables now & then caused me to rapidly lose weight. They did an ultrasound, which showed I had a lot of sludge in the liver/gallbladder (sludge is thick bile, or ‘pre-stones’, and are what gallstones are formed from). Also known as biliary stasis (bile gets thick and stuck in the liver). They also did a HIDA scan, which shows the ejection rate of the gallbladder. Mine only ejected at 50%, so that was also sluggish.
This caused severe constipation, which I had been dealing with for a lot of my life anyway, but it was much more severe during that year. It would cause serious distended bloating at times, as I would be stuck for days if not a week at a time.
I still had no solid answers as to what was causing this. I had multiple investigations and tests. Just because my colonoscopy and endoscopies (cameras up & down both ends) came back normal, and most of my blood tests came back relatively normal, they were saying ‘good news, there’s nothing wrong with you!’ I was confused, even though glad nothing serious was wrong, I was suffering awfully still and having no answers by now was maddening.
[Dr. Ronald W. Davis, PhD, Professor of Biochemistry and Genetics and Director of the Stanford Genome Technology Center]
I got worse, I was trying to eat more decent food but the pain would always come back rampantly. I also suffered gastroparesis (delayed stomach emptying, I was constantly full even off a few mouthfuls of food). The only way I could sleep OK and not be in ripping pain in my upper abdomen, quite often with nausea and vomiting, was if I stuck to fruit / steamed veg with no fat or rich food.
At this point, late 2000, I went back up the coast to my parents place to try to get some help. I had many more tests in hospitals, saw various specialists, who all had no answers and just asked me if I was ‘depressed’. My answer was no, “well except for the fact that it’s kind of depressing to live with pain & nausea every day unable to eat properly!”
I had been in hospital about 3 weeks. I saw a psychiatrist who I had various discussions with. He said, “You seem completely normal to me, I’m going to push that they try to find a physical cause.”
Then there was this one “specialist” who came to my room one day when I was weak, debilitated and down to about 45kg, with no energy. He says to me, “OK no more laying around feeling sick. There’s nothing wrong with you, you just need to eat more son”. (He thought I had some eating disorder). I was FURIOUS to say the least! I said, “Are you kidding me? Do you think I enjoy this? I had a great life back home with tons of friends and was busy non stop. If I just need to eat more then bring me a pizza! I LOVE food”. With this he actually looked around quite puzzled scratching his head.
[Pizza. Just give it to me k thx]
Another time the same one came back to my room saying, in front of a group of med students no less.. “what you’re suffering from is called ‘somatization disorder’.” Oh how the fury mounted. Just because my ‘blood tests’ were relatively normal. Well guess what buddy? You can run those blood tests on a fresh corpse and they will also come back ‘normal’. Does that mean that corpse is pretty healthy? Sure it does. -_-
Somatization disorder is often a wastebasket diagnosis when they cannot find the cause of an actual problem (no offense to anyone that actually has it, but it is thrown around far too commonly. Almost ALL ME/CFS patients have infuriatingly had this diagnosis at some stage of their illness).
After that nightmare they sent me home with no help and no answers, emaciated & weak. Luckily my uncle had a relative who was a director in a major hospital in Brisbane, QLD. He contacted him and they got me a place up there right away.
I was flown up in December 2000, at a mere 43kg (about 95lb), my lowest point. I was weak and malnourished, but just made the journey. I was freezing cold in a jacket, in summer, the plane trip was rough. I was picked up from the airport and taken to the hospital, where I spent 6 weeks on a naso-gastric feeding tube (tube from the nose to duodenum that slowly drip feeds liquid nutrition over 24hrs). In this 6 weeks, I gained back a much needed 10kg.
The above events I believe were my major stressors (plus a lifetime of gut problems/IBS, allergies & intolerances) which triggered my CFIDS/ME, MCS & Fibromyalgia.
During that hospital stay, 2 weeks in or so after regaining some strength, I went to see a natural therapist out in the Queensland bush. It was an amazing place, so serene and peaceful. He put me on various supplements and herbs to heal, cleanse and help the gut and body such as B12, magnesium, probiotics, bitters and various herbals. These things helped in a short time to be able to eat somewhat better again.
After my 6 week stay, was sent home with advice to come back later & have the gallbladder removed due to the sludge etc. I saw a great Naturopath in Sydney named Bruno Marevich (Australian Naturopathics), who put me onto various formulas which really helped my gut and general physiology. Still not cured, but had more energy and clarity than usual on his protocol.
I still had frequent gallbladder pain however, so returned to QLD in 2001 to have it removed. Probably not the best idea, as that surgery was very stressful on the body and really worsened the CFS, MCS (chemical sensitivities), and so on. Next couple of years I still struggled a lot with liver & pancreatic pain on a constant basis, plus still struggled with the gastroparesis.
In 2003, I underwent a procedure called a “wide sphincterotomy”. Basically they cut the sphincter muscle of open of the common bile/pancreatic duct, which can help with digestive fluid drainage, in conditions like mine where there are spasms/pain around that area. It took about 5-6 months of healing, but after that it definitely helped with being able to eat more, and definitely reduced the upper GI (pancreatic/liver) pain. It was still there, but to a lesser degree – the surgery did help. Eventually I could actually eat more fat & meat than before (still not a lot but much better) without quite as much problem.
After this time in the following years, I tried loads of treatments, spending an absolute fortune. Most of my money in fact went on trying every new thing I read about or heard from the many alternative practitioners I visited. Can’t even guess but I’m sure I spent around $50,000-$100,000 on treatments over some years.
Including but surely not limited to: Many types of vitamins and minerals, both combos and specific, systemic enzyme therapy, probiotics (bottled, drinks and home made like kefir, kombucha etc), specific and combo amino acids, many various detox programs & kits, super green drinks (aka mowed grass), many many herbal remedies, “Super foods” like noni juice etc (aka $50 grape juice), homeopathics, chiropractic treatments, physio, reiki, herbal parasite treatments, ‘human bowel flora transplant’ (that was a fun one), avoiding electromagnetism, “bug zappers”, drugs of many shapes and sizes from anti-depressants (not for depression but to try enhance neurotransmitter function adn sleep), to anti-biotics, anti-fungals, lots of gut drugs for all the IBS/bowel, acid reflux and other GI problems including anti-spasmodics, anti-emetics, PPI’s / acid blockers, the list goes on.
Living with gut pain, constant nausea and this other myriad of unpleasantness day in day out will drive one to great lengths I can tell you now.
In 2005 I moved back to my home town of Wollongong NSW. I was at this stage improving to a degree. The ME/CFS was still there, but I started being able to go out a bit more often, even to a live show or bar some nights. Living with my brother & old friends again was great. The next few years the health was ‘OK’, therefore I stopped chasing Dr’s, treatments and so on, because I was so sick of it all. Being ‘good enough’ (which was still far from good), I just lived life for a while.
[My home town of Wollongong – where the mountains meet the sea]
This in hindsight was not the best idea. I should have kept a balance of trying treatments and taking it easy, because I started eating bad food again, including junk & take aways, as for some reason I could tolerate it again a bit better. I still ate healthy in between, but my body needed to never eat like that.
The Adrenal Crash..
In late 2007, I started developing worse low adrenal symptoms (many of these overlap CFS symptoms). Coldness, weakness, shaking, worse allergies & rashes, more weight loss despite lots of food, and having energy crashes which was getting worse with less and less activity. I got onto licorice root extract, as this helps the adrenals/body to hold onto cortisone longer in the body without being broken down by the liver. It also mimics aldosterone, which helps retain salt and increase blood pressure.
At first it was miraculous, I felt SO much better! Warmth returned to my body and I felt relaxed and less shaky. I was able to do more activity wise for quite a while. I didn’t know this at the time, but licorice will lose its effect if you don’t have breaks from it. Therefore I was on it daily, and it started to lose effectiveness, requiring me to increase the dose. Eventually I was at about 10 grams a day, along with about 2-4 teaspoons of sea salt in water a day. This dose is high and would send most normal (non CFS) peoples blood pressure spiking through the roof, yet I still had postural tachycardia / orthostatic intolerance with dropping blood pressure. For licorice to keep it’s wonderful beneficial effect, one must have it say, 3 times a week, or be on it for a couple of weeks then take a week off, and so on.
By August 2008, the adrenals really crashed. I suddenly got much worse, and ended up in ER 6 times in 6 weeks. One day I woke up with the most incredible weakness of my life. I was shaking, could hardly lift my limbs, and was freezing cold to the core (despite warm weather at the time). I felt like the very life force had been sucked out of my body.
I was having postural BP drops of 20 or 25 points on standing (100/70 to 80/60 or so immediately on standing) and could barely even control my limbs. I was taken to ER where they game me IV saline over an hour or so. Helped BP but still felt very unwell. Each time I went in with a crash, was given 1 or 2 litres saline, but sent home with no diagnosis.
Even though I had CFS, I had never felt this bad. I was no longer able to cook any food or even shower more than once a week or so, the energy from my body was completely gone.
I was constantly waking through the night, shaking and freezing cold to the core. I had frequent diarrhoea and polyuria, hypoglycaemia / instability without very frequent (hourly) eating despite frequent nausea, weak appetite, anxiety, dim vision, etc.
I finally had an ITT (Insulin Tolerance Test), with the endocrinology department at my hospital. The above 6 weeks was between that test and the follow up. Finally had that next appointment with the Endo department, and the test revealed that I had a blunted adrenal response. The test includes getting an injection of rapid acting insulin while fasting, which causes a hypoglycemic crash (and boy did it). This is very stressful on the body and is supposed to induce the HPA (hypothalamic-pituitary-adrenal) axis to produce more cortisol in response to the stress. A normal result would be that the cortisol levels rise over the next few hours at each blood test. But mine dropped at each interval, indicating an abnormal response, and secondary adrenal insufficiency.
I was started on Cortisone Acetate at 25mg (= hydrocortisone 20mg). Most of the above dreadful symptoms I was getting drastically improved overnight. The shakiness, coldness to the core, anxiety, it all just relaxed. I was exhausted from it all however. I was still very weak, and realised within a couple of weeks that the dose was too low for me. I changed over to HC (hydro-cortisone) and this worked much better for me than acetate (CA has to be converted by the liver, whereas HC doesn’t, therefore is more ‘ready to use’ by the body). Over about 3 weeks I got up to 40mg, as realised that was where I needed to be to get through a day. I did however also have to dose multiple times a day (about 6-7), as it seemed to run out very fast leaving me shaky and low in no time.
The next 3 years left me relatively housebound. The cortisone while relieving a lot of symptoms, made certain aspects of the CFS worse. Brain really fogged out worse than ever and this has been the same ever since. Immunity worsened over this period until I just had almost one long permanent flu like illness. One virus or bug after another with little break in between. The only good thing it did was shift my metabolism to gain a much needed 15kg of weight near the starting of treatment. It was a significant fat and muscle gain with no diet change or exercise. Still, I wish I never had to touch the stuff, as it has done so much damage.
Come November 2011. Had been on HC for 3 years, with no stability on it. My body metabolized it so poorly that it seems to run out every 2hrs and often less. Therefore I had to dose about 8-10 times a day just to get through a day, and was often on too much. I was at this time on about 50mg a day, sometimes more, too high to be on for a long time, and that was most of 2011.
[2017 update: been on an insulin pump delivering cortisol under the skin, which has been amazing since 2012)
My stomach felt damaged, burning gut and esophagus. Hurt to eat most foods except very light soft plain food, and I felt rather nauseous after almost everything. This was only new in the last 3-6 months, but got rapidly worse. When I eat it also flares up systemic inflammation around the torso, that makes all my tiny joints hurt & ‘crack’, from ribs to spine. Very uncomfortable and is rarely relieved, unless I don’t eat at all. My neurological symptoms have been worse too (tingling, brain symptoms etc). These are also worse after eating, somehow connected.
Also my immune system has gone haywire. 2011 I had 3 major flu’s and about 4-5 lesser virus type bugs. However they lasted months at a time each, and I now just feel constantly sick. My lungs hurt, its hard to breathe properly, always wheezy & asthmatic, sinuses blocked & clogged, etc. I need to take strong antihistamines every day or it feels like I’m just having one long constant allergic reaction to everything.
~Chris.
Click for My Story: | Part 2: 7 Weeks in Hospital | Part 3: Heart & ER | Part 4: Hospital Again – No Answers | Part 5: Long overdue update! 2012-2017
CFS Journey 
urgh what a nightmare Chris, you have been through the wars.
You sound very chipper and strong though, and when you do get better I look forward to seeing what changes you can bring 🙂
Probably you have already tried this with your gut history but just incase. Have you tried the Prince Alfred Hospital elimination diet? I’m on that and while I haven’t had the digestive problems you have listed, I do get a sore stomach and reflux and have managed to feel better since being on this diet. i found that I am intolerant to salicylates (a natural food chemical in most foods) and cutting them out (+gluten and lactose) has really helped. Salicylates increase the acid in your stomach apparently so that may be why cutting them out helped me.
Have you discovered buckwheat pancakes in the packet? they are my fave non gluten breakfast/bread substitute…
Good luck with everything
Sarah Bellany
Thanks Sarah. Indeed I have. And yeah I generally stay as positive as possible through much as I can, as it’s important in such situations. Ive always been a generally positive person, which is lucky I spose.
Yeap, one of the best diets if not the best i’ve tried out of myriads (the RPA elimination that is). I definitely react to salycilates and amines etc. This diet reduces rashes, allergies and so on more than any other. I think everyone with CFS, Fibro, or other allergic/reactive type conditions should try this out.
Yeap those buckwheat pancakes are great 🙂 After I sort this current gut situation out and am able to eat more again I’ll be doing a modified version of this diet (cross with paleo).
HI, Chris,
Thank you for all the work you have done to share your story. I am sure it will help people.
I don’t have any answers for you, but maybe something will occur to me; my mind works in slow motion, I put in a request and at some point later, the answer comes.
I have adrenal insufficiency and pituitary dysfunction (plus Lyme, CFS, auto-immune) and am on 10 mg slow-release hydrocortisone. It lasts me about 6 hours, depending on how much activity. Luckily mine was caught before the crash, and luckily also, I wasn’t given the challenge test. I am glad you are putting the warning out about that. I am low in ACTH, aldosterone, DHEA, cortisol, pregnenolone, and all the hormones they tested for. I take the T3 form of thryroid supplement, made at a compounding pharmacy.
You have tried a lot of interesting things. At one point, I went to a traditional Chinese medicine doctor for a year or so. The herbs he gave me for parasites really helped. Unfortunately, it is rare for the bugs to show up in standard testing (in the US at least), but a trial proved to me that I needed to address these. I had amoebic dysentery, untreated for a year when I was 19-20. You probably know all about this angle.
You have been through so much. Keep fighting and resting too. I look forward to reading more. I send my best wishes for your recovery!
Kelly
Hi Kelly, no probs, glad to share if it helps anyone. Hopefully I can get some help too eventually, but complex as it is people generally don’t know what else to do seeing as I’ve already tried so much. I kind of know what I need to do to a degree, and always working towards it, but one can’t know everything in these situations.
So you have alot of conditions too, it can often go that way. Good if you’ve got your treatments etc mostly under control. I tried compounded slow release HC but it wasn’t strong enough and I ended up on too much for a day to get by. Duocort is supposed to be coming out soon, it already is in Europe. That should be helpful for alot of people. I personally need this pump however as I can’t keep damaging my gut with any tablets i’ve realised. I’ve wondered if T3 would help me. My tests are fairly normal for thyroid but I have the severe brain dysfunction of low thyroid. Also sometimes Iodoral really helps my brain function better and gives some energy, which I wonder if is from the conversion to T3.
Parasite cleanses can be good. I like the metagenics detox regime which starts with a parasite cleanse, then goes on to liver and intestinal detox etc. Quite comprehensive.
Thanks, doing my best. 🙂
My goodness, Chris, your poor body. I have experienced most of your symptoms, but I shy from the medical community. I have tried to fight this CFIDS/FM for 20 years, and have come to the conclusion that my best response to all of my bodys’ symptoms were to give in to it. I have only lived maybe a 32nth of a life the last 20 years, and I want me back. I am allowing myself 2 years of doing nothing except resting my body and soul and giving it everything natural that I feel it needs. Giving my body a chance to heal itself. I think I picked up that theme at one point in your journey, so I think you can relate. The human body is an amazing thing, if we can just leave it alone as much as possible, maybe we can find wellness.
Hi Chris: Thank you for doing this blog. I think you are obviously brave but also sincere and still full of live to be lived. I know you from an adrenal forum. I crashed about the same time you did in 2008. I am in the states and tried the pump about 6 months ago. Unfortunately it didn’t work for me due to Lyme complications and my need for the longer acting steroid, Medrol. Anyway I have a pump that I’d be more than happy to give you. The ONLY thing wrong with it is that it doesn’t seem to let you know when the batteries are close to losing power. But I found I just wrote down when I started using new batteries. They seemed to last for about 2-3 weeks. So at the two week mark, I’d check the machine diligently; as I always did anyway. It wasn’t nearly as difficult to utilize as I thought it would be and I hope it gives you some good qulaity of life. As you probably know, most people need far less solu-cortef on it than they did oral meds; obviously or I shouldn’t say obviously about any of us, maybe however due to our gut issues. Anyway I could easily send to you; but may take awhile to get there. If you have any iinterest, please email me! Best to you always Christ.
Thanks very much Julie. You’re a wonderful one indeed 🙂 Apparently I may have Lyme too – the tests show some positive results for it, but I personally don’t think it’s the number 1 reason I’m this bad, but more a side effect of very low immunity. I’ve never met a Lyme person bad as me, and most can eat normal food whereas I can barely eat any more, so it’s got to be something else. Things just feel totally jammed up in my gut system etc.
Thanks again. ~C.
Chris:
I feel so badly for you. The only thing I can contribute is that perhaps you should look into Fluoroquinolone toxicity. I’m sure you’ve had many antibiotics in the past and many of them were probably fluoroquinolones such as cipro or levaquin. These are toxic drugs that can cause most of the symptoms you have. Google it and you’ll see what I mean. No matter what you do in the future, don’t ever ever let anyone give you another fq antibiotics.
Also, Chris, I hate to say it and I know that it was a life saver at the time but the HC is hurting your body. I know it’s very very hard to do but I think weaning yourself off of it slowly may restore some of your health.
Best of luck and best wishes to you,
Deidre
Hi Deidre, thanks for that. I don’t think that’s the problem as I can’t remember getting FQ antibiotics at all in the past, and do remember most things I’ve taken. I have been on Keflex alot (cephalexin), doxycycline, minocycline when younger. Roxythromycin latley. I’ve become more intolerant to ABX (as with nearly everything now). I can tolerate the Roxyth, but not Doxy anymore for some reason, it feels really toxic, makes everything worse. Not allergy though like Penacillin (anaphylaxis).
That’s OK I don’t mind you saying it because I very well know it. I am extremely upset that I was on such high doses last year during so many flus and viral illnesses. I am trying to wean and have actually weaned down to about 20-22.5mg a day, but can’t get below that so far. I still feel destroyed though, and can only hope to God I can get some repair happening somehow. I have no idea what i’ll do if I get the flu again.
Yikes. I relate Chris. I am 35 years old and had wonderful health up until I had 5 mercury fillings put in my face in early 2000. Since then my health has eroded subtly in a way that has been unimaginably hard to figure out. In fact, I had stopped trying 6 or 7 months ago until I met my friend Mary Ellen. I am only up writing this right now at 4am because I had a root canal done 5 months ago which made all of my symptoms blow up, one of which is an intermittent insomnia pattern that went from one day every few months to 5 starting that night! Mercury is the most toxic substance to man that isn’t radioactive and it sounds like you have a good amount in your body. Have you researched mercury poisoning? It is amazing the things I have found out about it. It is changing my consciousness. Keep posting on FDC and email me if you have questions. After Acceptance the first step is to have mercury fillings removed by a homeopathic or bio dentist. Your not alone Chris. One day you will have tremendous appreciation and feel great awe at the gifts your individual journey will provide you and part of that is the work you are doing with your blog. Check out Andy Cutlers website and listen to a podcast or two. The first one I heard made me weep. I resonated so much. Mary Ellen will contact you as well. KIT Jonathan
Hi there Jonathan. Yeah it seems Mercury is a huge deal and can make one very ill. I don’t think it’s my only problem but it plays a major part im sure, as i recall becoming unwell a couple weeks after having 3 large ones put in. It was only a couple years after that my liver problems started and whole health crashed. Not sure exactly how much it contributed, but Im sure a fair bit. I really need to get the fillings out to start chelation, but I simply cannot leave the house, let alone get taken to a clinic to have fillings removed! I have no idea how I’m going to do it, but certainly need to. So frustrating, to say the least.
You can read my frustrations with detox & mercury by clicking the link to “CFS & Poor Detoxification” on the right. Thanks again. ~C.
Hello Chris
Sad story and I understand what you are going through.
Long story cut short, sorry not much energy 🙂
Have a look at DPP-IV enzym (Probiozym) from neurozym.com and low dose naltrexone (www.ldnscience.com).The enzym heals the gut from people who cannot digest gluten properly. LDN stimulates the formation of opiate receptors on your cells which have been destroyed by the toxins of non-digested gluten (called exorphines, incl soya, milk, spinach). Opiate receptors are responsible for immunity, pain modulation etc. Most receptors are found in the brain, HPA-axis, intestines, reproductive organs.
Start very slowly, let’s say 0,25 mg and after 4 weeks you can go to 0,5 mg. I was 90% bedridden, could not read or listen to music and now I can drive a car and write you all this. It took me over a year to move up to 3,5 mg.
LDN doesn’t fix everything but together with a B12 (methylation) protocol, I hope to be doing much better in a year time after 9 years of nightmare.
All the best, Marlène
Hi Marlene. Haven’t looked at DPP-IV Enzym. I didn’t tolerate LDN though, made me worse, like many things do. I started at 0.5, went down to 0.25, reacted badly to it whole time (2 weeks, but still, bad enough not to continue). Not sure why I reacted so bad. It sux because I always hear how much it helps others. I am definitely on methylation supps, they help more than anything and *just* keep me hanging in. Glad to hear you have gotten so much better. We need more stories like this 🙂
~C.
Hang in there, Chris! You’ve been through hell, mate, no doubt of that. But the body has enormous healing capabilities. Just a matter of getting a foothold with the right therapy at the right time, and letting your body start to rebound.
I’ve had bad allergies for years, have massive adrenal weakness and fatigue, have been on licorice and massive doses of adrenal cortex for a couple years, have a couple of stomach ulcers & gastritis, have gallstones & sludge, was poisoned by mercury fillings which started all this, and believe me can relate to a lot of what you’re going through.
Unfortunately, it seems like the immune system (allergies) and the adrenal system are two of the hardest things to treat! They’re both related though, when the allergies are raging, it takes a toll on the adrenals, and then with less cortisol and adrenal function, the immune system goes haywire. Important to get both of those under control – glad the cortisone is at least helping a bit, hopefully that pump will work and take some stress of your stomach.
Think it’s really important to rest as much as possible while the adrenals heal. It can really help to take adrenal supporting nutrients, too, depending on what you need. The B vitamins, esp. B5 (pantothenic & pantethine) can provide support. Maybe try some adaptogenics, too – withania, shisandra, eleuthero, etc. Like the licorice, it’s good to take breaks.
If you want to brainstorm ever, feel free to contact me. I’m jeffrez at Phoenix Rising forums, you can send me msgs there.
Hang in there!
Hey Jeffrez. Thanks for the reply. Very interesting! It seems you have shared a very similar path to me.. all of those things! I also didn’t get gallbladder sludge & liver aches/pain until about 1-1.5 years after my amalgams were put in. I did get nausea and so on a few weeks after they were put in but NEVER linked the two until recent years. I still haven’t got them out and many practitioners think I am likely extremely mercury sensitive, and that is one of the main things poisoning my systems and detox pathways etc.
So you are ok with your adrenals only on adrenal cortex? I would rather have been on that too, however it made me feel really weird, an immune type reaction which i seem to get to all glandulars. Hence I had to go on normal cortisone, which I believe contributed a lot to the severity of my current condition.
I agree, my immune system is SO SHOT, that I just get one virus, bug or infection after another. I am rarely, if ever ‘well’ without having something going at me. Usually a cold or similar bug, and it greatly taxes the entire system, every time. It usually lasts about 3 weeks too before i feel remotely better. Then I only don’t have ‘something’ for about 7-10 days. 2 weeks is lucky! I have no idea how to treat this. I was on high dose herbs for almost a year, and the severe allergies and ashtma I had from them were too much, as my system is very salicylate sensitive (very high in herbals). I had to get off them and rarely do any herbals now, which doesn’t help the bugs I have. B5 is good, again, cant take too much. I was also on licorice root for a whole year which helped me delay going on cortisone. Eventually it stopped working though, also had the worst asthma from it as its very high sal.
Talk more soon sure.
LDN made me worse, too. Flared up some massive inflammation, even got carpal tunnel from it, maybe even triggered thyroid autoimmunities. Really wiped today, sleep has been a wreck. TTY Later
Really! Interesting. There’s not many i’ve met that can also say they got worse from LDN or it didnt agree. Most that have gone ahead with it have tolerated it ok. But yes, really made me feel strange had to quit, like most other treatments unfortunately! I’m just waiting for that one thing that starts to stabilize me so I can get on with all the other good stuff that needs to be done for healing.
Chris, just read your story and found this paragraph…
Natural Therapist out in the Queensland bush. It was an amazing place, so serene and peaceful. He put me on various supplements and herbs to heal, cleanse and help the gut and body such as B12, magnesium, probiotics, bitters and various herbals. These things helped in a short time to be able to eat somewhat better again.
Seems like you healed there, is it an option to go back to heal again?
Many people with adrenal problems also have thyroid problems have you had Free T4, Free T3, TSH and thyroid antibodies tested? If not it might be good to rule that out. Thyroid, like adrenals effects every cell in the body. Natural thyroid hormone works best for most people.
One other thought there is something called Hydrocortisone cream. You rub it on your skin instead of taking it internally. Measure the amount and apply, could take the pressure off your digestive system for awhile quite a few people use this method when HC upsets their stomach. One person also uses Solu-Cortef injectable for daily dosing again to avoid stomach upset.
Peace Love and Harmony,
Bev
Thanks Bev. No way can go to QLD bush again, I was much more well back then, its a huge trip to get out to that place. I can barely tolerate a 10 minute car trip now. Yeah I’ve had the thyroid tests, frees come back mid range normal so not sure if that’s something or not. Also no need for HC cream as I use an insulin pump now to deliver the HC. It helped me get off the stomach acid blockers I was on, but I think too late anyway. I should have been on it years ago when I 1st started on HC. Thanks tho!
I stumbled upon your web via youtube. Can’t believe there’s someone else out there with severe ME who’s also on hydrocortisone. You don’t now how much damage that stuff has done to me…BUT…it’s also the only treatment I can take for the Crohns disease i also have( also NMH osteoporosis contractures + other complications). Im on 40mg in divided doses throughout the day. I’m guessing it may be actually making you sicker. After a while it can turn on you with lowered immunity probs and horrible and wierd side effects. You might find Somac helpful for the irritation. Im not well enough to type much more now but will try to follow up later. I have severe ME( like dysautonomia with tackycardia\bp symptoms i get) and a 20 yr story of hell. Im typing from a small phone as i cannot tolerate computer screens. I’ve been laying in a hospital bed for 11 yrs and am one of those who can only ingest an enteral liquid diet for food. That’s kept me alive for 11 yrs. Intended to give you some hope. Just know God is real.
Hi Tanya. Sorry to hear you are so severe also. Its amazing to meet someone who is just as bad. Not a good thing of course but im really tired hearing that im the worst case anyone has ever met. Its very frustrating to say the least.
Oh believe me I completey understand about filthy cortisone. I hate the stuff with a vengeful passion. While it saved me a few years ago when my adrenals crashed, beginning of 2011 it really screwed my immune system fierce. Now im desparately looking for a way to fix that. Immune herbs helped to a degree but the salicylates in them were causing loads of problems for me. Still looking and trying none the less.
Im stuck on cortisone my adrenals are completely non responsive they have been ever since i started hc. I assume that you are also dependant on it now? I am down to 25mg myself. I was also on 40 for the first 3 years and even more during flus etc. This just viciously stuffed my gut and other systems. I strongly feel if I never had to go on HC I would not be near as bad as I am. There are a few of us but, I’m on many adrenal and Addisons boards, and there are certainly a few that have had CFS which has progressed to AI and cortisone dependance. These people are *always* the worst cases of CFS.
Cortisone is often just too hard on a cfs body. Any way to restart the adrenals would save quite a few people if the medicine advances in time. Sometimes if I have a much better day, and *manage* to use really low doses like 20mg HC and not crash, my brain & body do feel a bit better. This is rare. First few years on HC I always felt better from extra dosing, and did it too often, even when I had a CFS energy crash, not low cortisol. Huge realisation since late last year. HATE the stuff.
Thats no good about only enteral. I know if i only take elemental drinks my body has so much less reactivity and pain etc. But the sugar in them flares bugs massively. Just another vicious catch 22 that is my life!
Hey Chris!
I am interested in your LDN experience. I tried it 4 days ago starting at wayy too high dose as recommended by my doctor 3mg, then tried 1mg the next night. Almost instantly I felt strange, wired, hot, headaches, nausea. The next day had extreme nausea and headaches and a worsening of symptoms. The days after trying 1mg flu like symptoms were flaring, with nausea headaches, tight chest, tingling lips etc. it’s now been 4 days since tAking it and my body feel like it has crashed and very viral/fluey and dramatically increased pain. I am really scared as I had made some great improvement recently with natural therapies and methylation protocol and parasite treatment. I am worried that I have ruined all my years of hard work. How did you react to LDN and how long did it take to pass?
Thanks sooo much, Amy
Hey there Amy. Yeah its interesting that one. Im not sure why some have bad reactions and some dont. I hear of so many people starting low and ramping up, and only getting amazing benefits. So frustrating when you have hope after hearing such things and your body decides to do the opposite. I started at 0.5mg because im so sensitive to things, amd I only felt more toxic and irritable over the next few weeks of trying it so I stopped. I cant remember if I tried an even super tinier dose than that too.. either way I just felt unable to tolerate at all.
Don’t stress the reaction will pass even if it takes a while. Probably best to stop it as I assume you would have by now. May not be the right treatment for you yet, if at all! As much as we want these things to help us that seem to help so many others, they arent always right for us, as Ive discovered on far too many occasions! In fact I often seem to go better when I stop trying to do so many things and go more simple.
What therapies have been helping you prior to this? What type of parasite cleanse are you on? Im trying to take the Hulda Clarke herbs atm (while taking anti-histamines for the asthma they surely give me!) to try kill some stuff. Id like to try zapping but unsure how well they really work or which ones would work at all. Liver flushing is always at the back of my mind too, but they are so hardcore im sure they would make me dreadfully ill. Question is.. would I be better off after surviving it? If it really does drastically improve liver function and digestion, it may just be worth some torture. Still undecided there though. -C.
Hi Chris,
I can in somethings relate to you, especially about chronic fatigue. When I was around 22, I started taking birth control pills for my acne, since it was severe. My acne completely went away, thank God. But unfortunately some time later I started having liver pain, especially very sensitive after Chinese food, or coffee. I did some research online on the birth control and seems like many girls suffer from liver damage after taking them 😦 so over years I’ve been praying and hoping for God to send me a good doctor or something that can help me heal. I have been digging Internet to find something that can help me fight fatigue and heal my liver. I also noticed that I had Major sugar imbalance after I ate something sweet. So basically it was hard for me to really know what was happening to my body. I went to see doctors and natural paths but they couldn’t find much. Except that I was deficient in Vitamin D and for sugar imbalance had to eat protein with every meal every 2hrs or 3. None of their suggestions helps me. Since then its been about four years, so I continued feelings weak. But I will tell you in the last month in a half I noticed a big improvement in my health. I went to see another doctor about 3 hours from where I live, told him all my symptoms and he ran a live cell analysis on three blood drops. For me it was amazing to see it on the screen what my blood looked like. He said I had liver enzymes in my blood, therefore my liver is not functioning as well. Also I had six parasites in just three drops. He told me that I need to do a parasite cleanse and liver flush right after. So I went home and instead of doing parasite cleanse I did liver flush first. It wasn’t as harsh on my liver since he told me to eat non fat diet for six days and on sixth day do oil/ Epsom salt flush (some people don’t eat so maybe thats why it might be hard on liver?? not sure exactly). So did that and I think my liver did improve and felt some what better, but then after a week started to feel a little weak again, so I decided to clean my colon with whole psyllium husk teaspoon mixed with water 1/2 hr before meal, and this is when I started noticing results that my fatigue started going away. I passed some worms that been probably eating away and causing fatigue to my body. I immediately started feeling better, I am so thankful to the Lord for how I feel right now. I stated to actually eating sweats and didn’t notice any weakness or sugar imbalance like i used to. I feel much better right now. Just last week I started taking paragone (parasite cleanse) which has been a little hard on my body since my liver started hurting a little probably from all the strong herbs, so currently I am taking a second day break so my stomach feels better, even though I still want to finish my parasite cleanse. Today I’m 29 so you can imagine it took me a while as well to get to where I am today, and I just started noticing improvements this last month, and very happy with the results. I wish I can somehow help you, but I will keep you in my prayers. If I were you I would probably first start of with a colon cleanse which is a ‘whole psyllium husk’ to get all that stuff out that is in your colon, scrub your walls so you can absorb vitamins and minerals much better. Because if your colon is clogged nothing will help, no vitamins even healthy food. But just so you know you will have constipation for about 2-3 days! because of all the garbage is is leaving your gut! Wish I can be more of help I can’t imagine what your going through. Just don’t give up have faith. God bless you. Ayla.
Thanks Ayla. Interesting story, Im glad you worked things out for yourself recently 🙂
As mentioned elsewhere liver flushing is the only thing i still havent tried. All herbs etc are too hard on my liver, tried so many of them. Also the allergy factor doesnt let me take herbs.
Not eating before liver flushing is usually only after 2pm on the day of the flush. I think one needs good blood sugar control for this. I know at the moment I would likely not do well trying not to eat for that long then a flush on top if it. Many say I shouldnt flush because Im too weak and its very harsh on the body. Then others say it could be my only chance at clearing out some stuff to improve health. Really dont want to stuff things any further, am so fragile. But again, nothing is improving me anyway. Really wish I had more answers here.
As for psyllium, I dont notice a great deal of help from it apart from the benefit of fibre to keep things going. Ive always had a great diet and usually include fibre supps etc to help keep things clear. Widh it did help the general health more.
Hope you keep improving! Take care.
Hi Ayla, I’d be interested in knowing where this Dr. is that helped you figure things out. Ive had CFIDS/FM for almost 20 years and am about ready to give up on the mainstream medical community. Thanks.
Hi Chris, I hadn’t seen any recent updates on your heart symptoms resulting in the hospitalization last year. Are you still experiencing these? Like you, over the years things just continue to decline. I so agree that when you combine the “Addisons” and CFS (ME) it’s dreadful. Myself, I’ve been starting to have very severe heart issues and at this time I’m not even interested in seeing any more doctors. After a week in hospital last summer with absolutely no answers or resolution I realize that being there just makes things worse anyway. I have ‘do not resustitate’ in my medical papers and records. It’s not that I don’t have any hope, I just guess believing in heaven and all, if it’s such a wonderful place I’d rather be threre than here! After 10 years of this I’m bone tired; mentally, spiritually and physically. Like you, I’ve gotten to the point where even sitting up or standing for any length of time is super difficult, the nausea is near constant, more and more abdominal and neurological pain and food won’t digest right. I finally got off the Neurontin which I’d been on for 2 years. It was in retrospect a huge mistake. While it helped with the tremors I think it’s at the core of the nausea and I honestly think that it exaccerbated any heart issues. The list of side effects and withdrawal symptoms is huge. Golly, all I was trying to do was get SOME relief from SOME symptoms, but the old body just won’t tolerate these meds. Lesson learned, once again!!!! Anyway, just wanted to check in and say ‘hello’ and find out if the heart issues were still problematic for you and if you’d found anything to help. SIncerely, Stevie Lyn Stultz Richmond, Texas
Stevie! Good to hear from you. I think of you often as you’re the person that is the most close to my problems I’ve met in this whole time. The heart probs were this year in July. And yes they still flare up, not as bad as in July though. I find the heart episodes flare up when I get this recurring virus Ive been getting since last year. It’s the same symptoms every time.
It’s not at all just ‘cold & flu’ symptoms, but completely smashes me into the ground in every aspect. Feel more toxic, shaky, weak, unable to function, can’t breathe, worse allergies, muscles stiffen up, can barely eat even compared to usual (which is quite limited already). Its extremely frustrating to say the least. Specially that I seem to have one month without this virus (or somewhat suppressed), then about a full month with it. My immune system is totally shot. My blood tests are finally showing that too. Elevated IgG, IgM, IgA, IgE (all of them) – like its just going haywire/doesn’t know what to do.
Sounds similar to me! Food for me is just deciding not to digest alot of the time. I often have almost full days where I only drink my elemental type food drink, which digests very easily compared to anything else you could eat/drink. You’d prob benefit from them too. But yes often food is just sitting around doing nothing not moving out, and lots of pain and nausea with it.
No good re: Neurontin. That’s why Ive never been on any of those meds long term, I just never tolerated them as much as I wanted to for some relief. The only one is valium in very low doses, been on it since 06 or so. I’m about to try a beta blocker to try stop the heart triggers. It’s very likely I wont tolerate them however.
Thanks for the update, good to hear from you, even if not the best news! x
Hi Chris,
Am too I’ll to write much but wanted to say I think you have already turned your horrible illness into something great because reading your website made me feel so relieved that I am not alone and not just going mad with everything I am experiencing. Thank you so much.
Thanks Fran, and no problem. I made the site to share experience and help others, so am glad if I could help 🙂
Chris, It seems to me you may have secondary hypothyroidism and/or some kind of thyroid hormone resistance. Your sleep issues, food sensitivites, MCS, fatigue, adrenal exhaustion, all point to that direction. Heck, even yellow hands means poor conversion of beta carotene, which is a classical finding in hypoT. You should consider T3 or natural thyroid extract under the guidance of a good doc and bringing your iron/hormone levels up.
Hi Christo. Yes it definitely seems so. It would more likely be some sort of receptor resistance though as my levels are quite normal – about mid range for regular & free T3 and T4. I have T3 here at home and dont tolerate it. How is this – I take just 5mcg of T3, and I get weird (common for me) long poor drug processing symptoms – stuck foggy brain and all sorts, for 8-12 hours. THEN it seems to kick in – I suddenly get a surge of energy, brain and muscle pain clears up and all metabolic functions start running faster. Feels amazing. However not long after my brain feels kind of ‘fried’ – its not nice at all, so I never continue. Iodine can give me the same benefit to a much less degree without the bad side effects. But not always, depends if my body is deciding to process things well that day or not. As for Armour etc, for some reason my body hates glandular extracts. They ALL make me feel really weird and irritable. I think it’s an immune reaction against them. Tried thyroid, adrenal, pituitary & mixed glandulars, every one of them does the same thing. So I don’t know what to do about this either, again.. another catch 22 of my life! I have to do something though everything is almost slowed to zero.
Chris, Hadn’t seen a posting from you in awhile so it’s nice to see that you’re still here. Now going into year 11 of CFS for me, I’m also still here but declining, like many fellow sufferers. The last 2 years have been an acceleration of heart issues and constant, unrelenting nausea. I’m on Phenergan and Zopran and Ativan just to try and keep it under control. Gotten to the point where I can stand for only a few minutes at a time. I’m trying, like ALL of you, to keep a positive attitude,,,,but isn’t that THE hardest thing. You want to believe that things will get ‘better’…Had my yearly Endocrinologist appt. and of course all blood tests seem ‘normal’ so got the yearly scripts and went on my way. She wants me to consult with yet another doctor so I’m pondering it. The doctor is Dr. Patricia Salvato in Houston, TX and apparently she is an internist who specializes in CFS and HIV patients and isn’t daunted by complex cases. So praying and pondering whether this is something I want to do, can afford to do and can withstand the challenges of even GOING to another doctor. And, like you, the repercussions from any trip,,,,anywhere….Did you see the article online at prohealth.com about the 24 year old woman in Denmark, Karina Hansen, who was forcibly removed from her home because the govt. didn’t agree with the treatment she was trying to get for CFS? Stevie Lyn
C,
All of these things can cause all of your symptoms. You may currently have all of them at the same time, I do. They are stealth and very hard to test for. You could be in the best hospital forever and they would never find any of them.
1) Bartonella (galaxy diagnostics)
2) Lyme (Igenix)
2) Parasites (Metamatrix)-still may miss them.
3) FL1953 (Fry Labs)
Research them, get tested and start treating, ASAP.
Best-S
I just came across your YouTube channel and found my way here. I’m in a relapse phase with my CFS right now so was in the mood to search out some fellow sufferers. Has your situation improved at all? Funny how at 12 I was told this couldn’t last more than a year and here I am, just had my 26th birthday. This is a wonderful site, awesome that you’ve still been able to create something of meaning despite such limitations. It says a lot when so much shines through.
Hi there Summer. No good to hear you’re in a relapse. Depends what you’ve tried already as to what to do next. Lol there’s no way they can say from one person to another how long this will last. Mine has been 14 years so far. You know why it’s not resolved? Because they have never found *my* particular root cause. If that is found and no blockages remain in the body, that is when more strong healing can begin. In the mean time we can only support the body with the best most easiest things for it to process so it can kind of ‘work around’ whatever the root issue is. Some of us will never find our root cause sadly, so have to manage the best we can. A plant based vegan fruit & veg type diet is the easiest thing for the body to process. I am trying to do some videos on this topic to get up soon for the channel.
Chris, was wondering how you are feeling compared to 2012 when you couldn’t ambulate very well and were not doing well at all? I am praying you say that today you are symptom free. How has the journey been since 2012 and what, if anything, has helped you? Thank you for sharing your story with us, so many of us live in the shadows and never even get counted as someone suffering from this disease.