Posted 12/6/2011 7:58 AM (GMT -8)
1. Have you tested positive for the Epstein Barr virus?
No. But in my experience that doesn't mean I don't have that, too.
2. Did your Chronic Fatigue start after Mono?
Not sure what started it. It was a gradual onset from a very young age.
3. Have you been officially diagnosed with CFIDS?
No.. Here in the U.k. I was officially diagnosed with M.E., which is more or less the same thing.
4. Have you have seen anything abnormal in your blood work ( i.e. Low platelets, high esr etc...anything.) since getting a CFIDS diagnosis?
By an independent specialist - Lyme Disease spirochettes, and Chlamydia pnemoniae bacteria.
5. Do you have any other diagnosed health problems ( diseases, syndromes etc...)
None. Before my M.E. diagnosis they thought I had Meniere's Disease which caused me to be dizzy, and heart disease which caused the palpitations and angina. Now after learning more about the two diseases I know about I have been able to alleviate most of the sympoms except chronic fatigue.
6. If you answered yes to #5, were these diagnosed before your CFIDs symptoms started. Do you believe it is secondary to another condition?
They were both diagnosed afterwards.
7. How many and what types of specialists have you seen? Which ones were the most helpful to you or helped improve your quality of life.
The lyme disease specialist who had a chronic fatigue clinic. Unfortuately they got to him and he was struck off.
8. What specialists to you recommend a person either newly diagnosed or looking for a diagnosis and treatment see.
Endocrine specialist - especially thyroid and adrenal and go for the best tests available. Salivary adrenal tests are far superior to blood, for example, and thyroid testing is better done with a 24 hour urine specimen analysis. These are the two most important glands in chronic fatigue, and the two most often misdiagnosed as being in the 'normal' range when they aren't, and if they aren't you can be very ill indeed.
9. What diagnostic tests did you feel were somewhat helpful in either ruling out other fatigue (or CFIDs symptoms) related diseases/disorders.
The only one which was half decent using the inadequate NHS testing here in the UK was the MRI brain scan to potentially rule out M.S. It was scary, but shocking to find my brain looked normal! The rest of the mainstream tests are diabolically bad and quite damaging to your case.
10. What medications are you taking to help control your symptoms? What has helped ( even a little.)
No pharmaceuticals. I once took very low dose prednisolone (alongside DHEA) after my adrenals virtually flatlined. However, it didn't make much difference, and I eventually came off after about a year when I was only slightly below normal in my cortisol levels and came off gradually without any problems.
7-Keto DHEA (which contains only a metabolite of DHEA) helped me the most over the years and I still take it. Before my cortisol levels flatlined they were producing too much and taking this mitigated the bad effects such as racing pulse and stomach acid, etc like a miracle. This works the same way as DHEA helping the immune system and inflammation etc, but without any of the hormonal side effects of ordinary DHEA
11. What dietary changes if any have you made that you feel have been helpful? ( Gluten Free? No Dairy? Vegetarian? Sugar Free?
I was forced to give up gluten over 20 years ago due to a very bad allergy I developed. I can't tolerate sugar either, and because of my anti-candida diet and hypoglycemia I also avoid fruit in the main, though I do eat tomatoes which don't seem to make it flair up. If I have a candida flair up I don't get any itching or obvious skin signs, but I get really bad cystitis and bladder urgency and pain, and this is accompanied by a tell tale yeasty smell from my lower part. It isn't unpleasant, just a bit like brewer's yeast! I haven't been to the g.p. about this because I manage to keep it under control with diet and supplements etc., and I don't get on well with pharmacuticals. Hence I don't bother with ordinary doctors unless it's a real emergency and I'm forced to. I haven't found them to be helpful to me in the past at all.
12.What natural/nutritional/vitamin supplements have been helpful in improving your symptoms?
7-Keo DHEA, vitamin D3, vitamin C, E, omega 3, EPO, zinc, selenium, calcium/magnesium, curcumin and others. Samento and other herbal extracts for lyme disease in the past.
13. Has exercise helped you at all, if so what kind? ( Yoga, walking etc...)
No. In the early stages it helped with stress reduction but as my condition worstened there was no spare energy for this and no longer an option without dire consequences.
14. How many hours a night do you sleep? Have you been diagnosed with any sleep disorders? If so what and when did it start? Do you take any medications that help? Anything else that helps?
On average around 7. I haven't been diagnosed with any sleep disorders. I don't have any trouble sleeping but the neighbours can be noisy and wake me up! I definietly need more sleep. I look exhausted and I am.
16. What is your personal belief on what causes CFIDS? ( i.e. autoimmune in nature? Chronic Epstein Barr virus, Endocrine disorder, neurological disorder, etc...)
Bio-engineered pathogens which the military scientists released into the population. E.g. lyme and chlamydia pneumoniae among a host of others were genetically altered to biologically disable us to make us more compliant and easier to manage, according to leaked military papers (sadly no longer available to view online!). Also population reduction as ill people generally have less or no children. Some of us are living experiments.
'Auto-immune' just means the pathogens have also managed to share their DNA with your immune system cells alongside hijacking your other blood cells energy supply so that they work for them and not for you, making you allergic to things which might be good for you and/or bad for them. This happened to me with olive oil and cumin after putting it on my skin only a few times, and after that I couldn't use them in cooking any more (lyme typically lives in the skin collagen).
CFIDS/M.E./CFS are just names for various usually unidentified coinfections, from one to many, from retroviruses to candida to stealth bacteria and mycoplasms, that all help each other proliferate in the body because they all catalyse each other.
For example, candida (yeast) infection according to one scientist, is said to catalyse all the others and hold them in place, so that even with the best antivirals or antibacterials you cannot eliminate them if you have any trace of yeast in your body (So definitely NO sugar!!). Mercury toxicity from vaccinations and amalgam fillings also provide a 5 star environment for these vampires. Studies in monkeys showed that within 2 weeks of mercury exposure through dental amalgam fillings, the animals had nasty pathogen growth in their intestines. The same was found with vaccinations, also pathogens in the spinal fluid and brain of humans. Plus formaldehyde and aluminum from cosmetics like shampoo and deodorant also attract and maintain them with the right habitat. You have to give them all up alongside the sugar and wheat and processed junk!
Adrenal fatigue and underactive thyroid also contribute. These pathogens go for these glands because they are nice soft tissues to inhabit and because they keep your immune system healthy and working efficiency, which is contrary to their purpose.
There may also be mitochondrial damage due to long term (years) exposure to these kinds of pathogens/and or other kinds of toxicity from chemicals or heavy metals.
Whatever the ultimate cause may be, (and I think all of these co-factors generate one cause), true recovery is in my estimation, a very long term process because when you kill these pathogens the cells they inhabit or have hijacked have to die because they have kept them artificially alive like half dead 'zombie' cells (infection with chlaymidiae pnemoniae bacteria, like other parasites, prevent cell apoptosis, which is natural cell death and renewal. They disable this function because they are syphoning off its life force so it's not in it's interests for it to die). All these cell debris have to be cleared out and new cells have to be formed, so you have to go slowly according to how ill (how big your pathogen load is) you are. It all costs the body energy as well, so whatever treatment you choose, you have to go slowly, because it's not just the die- off which makes you weaker etc, it's the renewal part. You need to eat, sleep and rest really well because your body is already under so much stress being disabled or handicapped by this illness.
17. Where do you go on the internet to get the most-up-to-date CFIDs trusted information?
I don't go on often, as I can't concentrate very well, but in the UK it is meresearch.org
18. Has getting this diagnosis effect your health insurance in anyway?
No, I was a lost cause long before insurance was even a possibility.
19. What advice would you give to someone who suspects they have this and can't get a diagnosis or feels defeated or has been newly diagnosed?
Go online and do your own research. Don't wait around for the authorities to bail you out or even help you at all, necessarily. They have vested interests and helping you isn't their main concern. Making a profit is.