Pt3. Heart Struggling – ER – July 2012
17th July 2012
On Sunday morning I had a heart arrhythmia of some sort. I was jolted suddenly by a spasm in the chest and heart started racing at least 200bpm+. I was blacking out, covered in sweat and convulsing uncontrollably. I don’t even know how I managed to call 000. They didn’t catch it on their tests in there as it had settled, so was sent home.
I had SVT many years ago, which was fixed up. They suspect that could be back. But im not sure it might be more to do with my cellular energy which seems to be really struggling (Mitochondria/ATP). It’s also to do with a large virus i’ve had (my recurring one).
I was back in hospital again last night, because my body keeps dropping out. That’s 3 days of exhausting trips back & forward to ER. Not only that but I’ve had to contest with staff half the time who have no idea about my conditions or their severity.
My energy seems to be literally failing. Problem is they can’t “see” your energy failing at the cellular level (as in severe CFS), and one gets sent home again. Just sent round in circles. I don’t know what this world is coming to when someone obviously needs such desparate help and gets nothing.
My muscles are all stiffening up and I often can barely use them. Muscles need plenty of ATP energy to even work at all.
I feel like I just get sent home to die, as many other severe MECFS patients do. I wish I knew where to go as my own treatments I’ve been on for years which helped greatly, are barely doing a thing any more, and when/if they do work they take twice as long.
This preview explains how we often get treated, it’s so very wrong. We need understanding. A couple of the people in this documentary are already dead, younger than me, because there is no support or treatment for us, yet it is one of the worst most disabling conditions on earth. I do not want to be another statistic. [Note 2018 – We now have hope with the new research being found more rapidly than ever before with the OMF – Open Medicine Foundation]
Click for My Story: | Part 1 | 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 
Chris…my heart is just breaking for you. I think the psychological and mental anguish of being dismissed and misunderstood when you are in such distress must come close to equaling the physical torture? Yes, it makes me think of Voices in the Shadows at many levels too. I hope to the powers that be that you will not be another statistic. XXOO
Thank you. It is extremely hard when the system seems to reject you, with no support. Makes you feel very alone in this world, indeed. I am very torn & frustrated right now. Best hope you can manage to stay stable for MANY years with this illness, because there is not much support for us yet in the least.
Very sorry you are having to endure all of this crap again Chris. I hope you find a way to stay positive. xo
Yeap, seems it’s not going to change any time soon, hence why we have to be the ones to bring it about.
Chris,
I read your post on Dr teitelbaum’s FB. I am sorry you are going through such distress! Do you also have Addison’s? I was in the hospital for a gall bladder removal and it was harsh! Couldn’t take my supplements and no one believed in CFS. Once I got out, saw my CFS doc and only then started recovering! Have you emailed Dr T personally appealing for some help? I know he would answer you.
This is such a terrible disease to have especially when the medical system doesn’t acknowledge what they don’t understand! It is such an awful feeling knowing we have the same illness. We could very easily be in each other’s shoes. I hope you get out of there soon and hope Dr. T is able to offer some help. My thoughts are with you ….
Thanks Val. Yeah it’s awful. I have Adrenal Insufficiency, ultimately the same thing as Addisons just from a different area.
Yes it’s very hard in mainstream medicine when you have CFS because they don’t understand how extremely low your physical cellular energy is. Most people in there have plentiful amounts of energy to deal with all the stresses so they all respond in a similar manner. We are so different but that cannot be ‘seen’ – not externally nor in their normal blood tests etc, therefore we often get treated harshly because they do not understand it at all.
Dr T Is awesome, I havent emailed him personally lately, but I’m not sure he would even know what I should do at the moment either. Wish there were more like him here in Australia!
Hi Chris,
Just checking in with you today! I have tried many of things that worked for others but not so much for me. It can be very frustrating!
The first thought I had when I read your post was severe adrenal dysfunction, whatever the form. I would bet it is something regular docs would ignore the importance of.
I hope you find some answers. It seems like there are so many solutions that you have tried?
Hoping for a better day for you!
Hi Val. I’ve already been on cortisone since late 2008, it’s horrid stuff & I hate it. Can’t get off it now. It doesn’t work very well, my body doenst process the drug well at all. Been a nightmare ever since being on it really. It’s what made me housebound from a better previous level, though I needed it anyway.
Hi Chris. If I were you, I would get to Dr. DeMeirleir in Beligum any way you can. Even if you need to get a loan or steal or crawl. He will test your stool for bacteria overgrowth and fixing that will help. Then, you might be put on GcMAF, which saved my life. Personally, things are serious enough for you that I would not waste my time on other things. Just my opinion…I have had this 20 yrs.
Best of luck
Linda
Thank you Linda. I wish I could. There is no way on earth. I am almost bed bound, and my muslces are almost not functioning any more. A short trip laying down in a car bottoms my body out. I would love to try GcMAF but it’s not easy to get in Aus. If I get to a major hospital in time I’ll see if anyone knows about it and can help me try it. Thahnks.
Hi Chris…. When you get to have your appointment with Dr Lewis talk to him about the GcMAF. I’ve spoken to people who have had advice on it from him. He’s apparently organising it for his patients? There are also ways to order it from overseas, but it’s expensive. 😦
All the best xo
Thanks Ali. Will see how it all goes. Id like to try it, hopefully no bad reactions.
No! dont give up yet. you can go to ebay and order MAF878. It is similar to GcMAF. You can order it from anywhere and it is not expensive. I know several peope on this. It’s a mix you make..like a yogurt. The bacteria produced make GcMAF in your body. It isn’t very expensive. You will need a heater to keep the temperature at 80 degrees for 5 days. This could buy you some time..or even a lot of time, if it works: Here is the link:
http://www.ebay.com/itm/maf-878-probiotic-/280908072550?pt=LH_DefaultDomain_0&hash=item41676d0666
Thanks. Unfortunately on reading, its fully dairy based, and dairy in all forms makes me dreadfully ill. I dont think my gut or system would welcome it in the least. That much dairy would certainly make me much worse, as it always does unfortunately. Even kefir does. If there was a dairy free way I could do it. I’d try the injections of MAF314, but again, can’t get it easily.
Hi Chris, Have you tried LDN low dose naltrexone? I started it about a month ago and it helping a lot. It is very inexpensive and might work for you. You can read about it here http://www.ldnaware.org/ldn/112-usa-ldn-links.asp
It also helps people with MS and other auto-immune illnesses even AIDS. It can be ordered from http://www.enlander.com/ look under products, supplements. Same source as the MAF 878 Perhaps there is a source for LDN in Australia. Dr Enlander also does SKYPE consultations if that is something you could do. He has been treating ME/CFS for many years and know how to help. You can call his office 212-794-2000 they are there only on Tues, Wed and Thurs. They are helping me alot so hope they can do the same for you.
Hi Bev. Yes I didn’t tolerate it at all, made me feel much worse unfortunately. Was very dissapointed, as with most things I try.
That might be good, if I get a bit stable I will try to consult with Dr Enlander. As it stands, if nothing happens soon I won’t be able to do anything soon.
Thanks.
Chris, I have contacted someone who may be able to help you. Hopefully, you will hear from him. If not, please email me….linda_lowther@yahoo.ca
Sorry, forgot to ask….why can’t you order the GcMAF from Europe or Japan by mail?
Chris, I have just contacted Dr Enlander myself via email and asked him if he knows of anyone in Australia to help you or what he would suggest. Sent his your contact info from this site. Praying for you to get the help you need, We do care!
Derek Enlander
if you can drop him an email…..
Thanks for that Bev. Appreciated.
Hi, Chris,
I’m praying that you will get help. I don’t know anything else to do. I hope some of the others who have offered will come through for you. No one should have to suffer like this with no help.
Kelly
Thank you. I agree, can’t understand how it can be like this.
Hi Chris..can you order GcMAF from GcMAF.eu?
Perhaps. I don’t know it may take ages to get here either way and Im going down hill too fast. I need to go to hospital.
Hello Chris
My heart just breaks to read about your days. I was severe like you last year and your posts brought it all back…being able to digest nothing, the weight loss, the sensitivities-I thought I would die of noise, weird brain storms, pain, oh the head/spine agony, heart not coping with anything, desperate trips to the ER then being sent home etc etc etc. It feels so so incredibly scary and lonely. I am in Melbourne and see Dr Lewis. Are you able to get an appointment with him? He will do phone consults if you are too ill to make it there. Do you have help at home? Please let me know how I can help (I’m not bedbound or severe any more). If you’d like to email me, I can send my email address.
Anna
Gee Anna that’s great that you came back from it all. I have tried so hard with treatments and therapies etc, but only gotten progressively worse since late last year. Very scary & lonely indeed, my sentements exactly.
I have an appointment with Dr Lewis, but it’s not ’till the end of August. I wish I started with him years ago. He had patches where not taking new patients for a long time though so it was hard to get in. Hopefully be able to get some ideas from them I havent tried yet anyway.
Thanks, C.
Hope you are doing okay Chris? Did you make the appt. with Dr.Lewis? Am curious to know the outcome of that, if you care to share! Best wishes on your way to better health!
Laura. Dr Lewis was cool. Knowledgeable and certainly knows more about the mechanisms of this illness than most. We just went through things and my history etc, im still waiting on tests he wants to do such as a bioscreen etc before any more is suggested. Thanks again!
Chris….best of luck. When you stabilize, if you order GcMAF, it takes only 1 or 2 days to get to you. They send it by courier.
xox
Really? From which source? That’d be good. ~C.
Chris, thinking of you and hope that you are getting the help you need and deserve. Many are hoping to be well enough to help others with ME/CFS and related diseases. You have already done a lot already with this blog. Very well done!
Lots of people with ME also have adrenal insufficiency of one degree or another. For some of us, it is a major player. How are you doing with your HC dosing these days?
If you put everything together that helps you even a little bit what would those things be? Can you, with the help of those around you, create the best possible environment for you?
Since you can eat veggies perhaps juicing would be a way to get the most nutrition into you right now. Is there anyone who could do that for you? How about warm soups? Don’t let anyone force you into stimulation or activity that only makes you worse.
Focusing on a short phrase or mantra when things get rough or anytime can help to keep your mind from running wild. If you want a mantra I would be happy to give you one or you can pick your own. Very helpful when everything else is falling apart.
Know that there are many people all around the world praying for you and wishing you the best possible healing and happiness.
Peace, Love and Harmony,
Bev
Thanks Bev. I have been doing Juicing but not much lately. Mantras are good. I should remember that when times are toughest.
Hi Chris. I meant to say I identify with your gut issues hugely. Last year I couldn’t seem to digest anything properly. Had a reaction to all meds including fairly innocuous supplements and most foods. Pared my diet back hugely to mostly soft veg (not too much veg or reacted) and a little meat steamed and rice. Ate every two hour but still lost weight. Turning point came when I just stopped taking everything and just stuck to very pared back fodmap diet. Gut improved hugely and gradually all ME symptoms overall. Don Lewis believes in starting with the gut. Please hang in. You are in my thoughts. Anna
Ah right, that’s interesting Anna. I also have often felt better when stopping most supplements. I have cut back on heaps now too. I think its to do with thel iver not being able to process them all, so they can create more probs than good. Yeah Don L I think works in a similar method to Dr Kenny De Mierlier who also believes most of it is from the gut. I’ve agreed with that forever, because my gut was always the worst problem in my life, and at the root of it all, still is. I have some major blockages down there that have never been found/fixed. Im hoping to get something found out soon when I go to hosp in Sydney. ~C.
I am glad you are going to hospital. Is it soon? Agree with everything you said about gut. I used to get pains in my liver and gallbladder regions and these rotten “ropey” gut spasms. I could feel my body digesting everything. I couldnt tolerate b vitamins, coq10, lamictal, anything. And the intractible nausea was spectacular. I think doing nothing except lie there seems to be the better option with this illness when youre severe and hope your body somehow works it out. I am still amazed how we can feel so ill and not die. I wish there was something I could do to ease your suffering. I’d swap my next appointment with dr Lewis but its not til September. If you are desperate to see him they can often fit you into a cancellation at short notice and he will do phone consults. The heart/Bp data (lying and standing measurements) are helpful to look at the orthostatic intolerance. This and the digestive issues were the most debilitating for me. Anna
Yeah interesting. Seems as Dr Kenny DM says, worse the gut, worse the CFS. Very true. Yeah no tolerance for most supps – it sux that coq10 etc are supposed to help mitochondrial energy, yet we dont tolerate them. Tried all recently again – coq10, ribose, carnitine, etc. Just made me feel more toxic etc. So it’s a catch 22 – cant get energy from those things, but energy keeps dropping with nothing either. Ugh! Ultimately if one CAN fix the gut, that’s usualy what restores a level of health.
Read this about DM’s protocol He usually works a lot on the gut. Sometimes give antibiotics for bacteria’s in the gut. Prescribes: Mutaflor, probiotics, lipoceutical Gluthatione, (Combizym) enzymes for digestion, TMD for cleansing out heavy metals, An alkaline product ( Alkala N), 1 mg C-vitamin, drink 3 l of water a day.
Sounds like you would also be a great candidate for MAF Yogurt also known as MAF 314 or MAF 878.
Wishing you only the best!
Yeap, sounds like a fantastic protocol. That would benefit almost every CFS patient, as it targets some of the absolulte major root causes of this problem. For me and few others, not tolerating glutathione is one of the worst problems with it all. Otherwise anyone who did tolerate the above protocol would see serious benefit in likely quite a short time. Yeah, would love to try MAF but not the yoghurt one, cant tolerate any dairy, ever.
So very sorry you are going through this.
I have too much of a headache to read everything, but wanted to share than gluten and/or a large meal can send my heart over 200. Also SSRIs. Metaprolol actually helps (very small dose because I have such low blood pressure).
Many Melatonin receptors in the gut!
Implications of melatonin therapy in irritable bowel syndrome: a systematic review.
Curr Pharm Des. 2010;16(33):3646-55.
http://www.ncbi.nlm.nih.gov/pubmed/21128901
Quote
…The results showed disturbances in endogenous melatonin concentration in IBS patients and significant benefits of exogenous melatonin in these patients by decreasing abdominal pain and improvement of overall IBS symptom scores. The results of seventeen non-clinical studies showed anxiolytic, anti-inflammatory, anti oxidative and motility regulatory effects of melatonin on GI tract. In conclusion melatonin can be a target of interest in IBS because of its potentials to regulate GI motility.
And a lot more litterature in PubMed if you search ‘melatonin IBS’.
Thx. Melatonin has never agreed with me unfort. It used to help me sleep but I always had a massive 24hr dead brain hangover from it, even the tiniest bit. Never helped the gut. My probs are more from the liver/pancreatic area than just the bowel anyway. If it were just IBS/bowel related, the SCD diet or GAPS diets are some of the absolute best.
Cris,
I have had similar attacks in the chest and throat chakras (energy centers)… not quite as bad as yours though. Since I left the comfort of the american city, I have learned that we have to become our own doctors now and share our experiences and solutions with eachother. The doctors in the system are exactly that, a part of a system, one that doesn’t work as you can see all around us in the world. It is failing. The greatest power you can give yourself is to trust in yourself and listen to what is within you. You have that power and wisdom within you. Start with the bio resonance and do yourself a favor, get yourself far away from cell phone towers and wi-fi (ie the city) and any other concentration of towers. I think you are hypersensitive to EMFs, like myself and are possibly suffering attacks from them. For your heart, eat cayenne on your food daily. I use it for my cold hands and feet. It heals ulcers so it should be good for your digestive, sore throats, parasites, etc. It is a most valuable spice to one’s health. Most importantly it stops heart attacks ON THE SPOT by applying it under the tongue to jump-start one’s circulation. Keep it nearby whenever you feel a build up of energy like an attack is coming on.
Thanks for the info Suzanne & sorry for delays, been hard times for me as usual. Some good health info there for sure. I think many people should take cayenne daily if they tolerate as it has many benefits. Personally though it gives me really bad asthma, like many herbal remedies do, due to the strong salycilate intolerance i have. I tried to persist a while ago but the allergy and asthma symptoms were way too severe. Thanks again.