Knowledge is power so please answer my informal questionnaire.

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Redheadbk
Regular Member


Date Joined Mar 2011
Total Posts : 34
   Posted 11/14/2011 10:22 PM (GMT -7)   
I don't even know anymore what I have and don't have. I know I've been formally diagnosed with Endometriosis ( 4 years ago ) and Fibromyalgia ( 8 months ago) and seriously suspected CFIDs. ( Especially since my most debilitating fatigue and symptoms began after getting Mono a year ago. The only thing worse then the symptoms is how little is known as to their causes and the amount of disinformation and conflicting information out there. So I figured I'd ask this community the questions I've always wondered about. So if you have time, would love to hear your answers.

1. Have you tested positive for the Epstein Barr virus?
2. Did your Chronic Fatigue start after Mono?
3. Have you been officially diagnosed with CFIDS?
4. Have you have seen anything abnormal in your blood work ( i.e. Low platelets, high esr etc...anything.) since getting a CFIDS diagnosis?
5. Do you have any other diagnosed health problems ( diseases, syndromes etc...)
6. If you answered yes to #5, were these diagnosed before your CFIDs symptoms started. Do you believe it is secondary to another condition?
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.
8. What specialists to you recommend a person either newly diagnosed or looking for a diagnosis and treatment see.
9. What diagnostic tests did you feel were somewhat helpful in either ruling out other fatigue (or CFIDs symptoms) related diseases/disorders.
10. What medications are you taking to help control your symptoms? What has helped ( even a little.)
11. What dietary changes if any have you made that you feel have been helpful? ( Gluten Free? No Dairy? Vegetarian? Sugar Free?
12.What natural/nutritional/vitamin supplements have been helpful in improving your symptoms?
13. Has exercise helped you at all, if so what kind? ( Yoga, walking etc...)
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?
16. What is your personal belief on what causes CFIDS? ( i.e. autoimmune in nature? Chronic Epstein Barr virus, Endocrine disorder, neurological disorder, etc...)
17. Where do you go on the internet to get the most-up-to-date CFIDs trusted information?
18. Has getting this diagnosis effect your health insurance in anyway?
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?

My answers are here:

1. Have you tested positive for the Epstein Barr virus?
Yes. It happend 3 months after the birth of my twins last year while getting a routine blood work after complaining of sever fatigue, muscle weakness and joint pain. Was semi-shocked as I was 35yrs old and couldn't believe I had mono.

2. Did your Chronic Fatigue start after Mono?
I started having sleep issues 6-7 years ago. It started with insomnia and then became unrefreshing sleep. It got much much worse after the twins were born even after they were sleeping through the night. Instead of waking tired, I now wake up exhausted, dizzy and have developed occipital neuralgia with bad migraines in the back of my head.

3. Have you been officially diagnosed with CFIDS? No. My Rheumatologist thinks it's possible though. I've heard some doctors shy away from the diagnosis due to insurance reasons but not exactly sure what those reasons are.

4. Have you have seen anything abnormal in your blood work ( i.e. Low platelets, high esr etc...anything.) since getting a CFIDS diagnosis? Still tested with high antibodies for EBV ( particularly the ones that should be gone after 2-7weeks.) 7 months later. My MPV is chronically low and has been for 6 years. My cholesterol has beed steadily rising and is now high. This is strange to me too as I am pretty tall and thin. My Bun/Cre ratio was high but this was the first I've seen of that. I have chronic low vitamin D. High Thyroglobulin levels ( but no thyroid antibodies ) a slightly enlarged thyroid. (beyond that I've got a negative ana, negative for Lymes, negative for Celiacs list goes on and on.


5. Do you have any other diagnosed health problems ( diseases, syndromes etc...)
Endometriosis and Fibromyalgia, TMJ.

6. If you answered yes to #5, were these diagnosed before your CFIDs symptoms started. Do you believe it is secondary to another condition? Endometriosis before the others after. Not sure what I believe depends on the day, what I read...my gut tells me I have an autoimmune disease that hasn't fully been figured out. That there's been studies that show that endometriosis is actually an autoimmune disease in almost the same family as Lupus. I feel like it's possible my immune issues are what either reactivated the EBV in my system then turning into CFIDS or that due to my immune problems my EBV was not controlled properly and it triggered an autoimmune response? Or sometimes I wonder if some type of endocrine disease that has effected my immune system...honestly I dunno anymore.

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.

GP, Gastro, Endocrinologist, Gynecologist, Rheumatologist. I guess my Rheumy but nothing has really helped me much.

8. What specialists to you recommend a person either newly diagnosed or looking for a diagnosis and treatment see.

No idea.

9. What diagnostic tests did you feel were somewhat helpful in either ruling out other fatigue (or CFIDs symptoms) related diseases/disorders.

10. What medications are you taking to help control your symptoms? What has helped ( even a little.) Muscle Relaxants ( not helping) Trazodone ( not sure, still wake unrefreshed.) Adderrall ( somewhat helpful for driving, getting things done, not being in a total fog.)

11. What dietary changes if any have you made that you feel have been helpful? ( Gluten Free? No Dairy? Vegetarian? Sugar Free? None that i've fully committed to beyond a low cholesterol diet.


12.What natural/nutritional/vitamin supplements have been helpful in improving your symptoms? Nothing that changed my world. But omega 3's help, vitamin D...


13. Has exercise helped you at all, if so what kind? ( Yoga, walking etc...) Been to tired and unmotivated but joined a gym Friday so we'll see.

14. How many hours a night do you sleep?

7-10 depends on night.

Have you been diagnosed with any sleep disorders? No but want to get a sleep study done.

If so what and when did it start? I know mine started 7 years ago.

Do you take any medications that help? Anything else that helps?

Nothing has helped yet.

16. What is your personal belief on what causes CFIDS? ( i.e. autoimmune in nature? Chronic Epstein Barr virus, Endocrine disorder, neurological disorder, etc...)

See above.

17. Where do you go on the internet to get the most-up-to-date CFIDs trusted information?
I don't know.

mutopian
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 12/6/2011 8:58 AM (GMT -7)   
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.

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/18/2012 3:39 PM (GMT -7)   
pretty long post but all super relevant questions.

here is one more that I would include after having gone so far as you have.

Have you been tested for lyme disease by a tick borne specialist or by
a known Lyme Literate MD or Lyme literate naturopath.

Have you read the book Insights into Lyme disease?
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

Pablo2
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 1/21/2012 3:16 PM (GMT -7)   
Hi Redheadbk,
Sorry but I do not understand a lot of the questions but can I tell you about my experience in the hope it will help?
My job was quite stressful at the time I developed M.E. It was a long time before I was officially diagnosed. Even then, there were some professionals who denied it's existence.
When I was diagnosed it was a milestone; Great. I was actually believed by a professional! I now knew what my problem was, I wasn't going mad. Now, I could begin to think about getting better!
I cannot recall what, if any, medication I received. I think I was prescribed Prozac tablets but decided not to take them.
My boss was very understanding and even though I was on sickness leave for almost a year, he allowed me to come back and work at my own pace and if I felt tired I could return home. This helped a lot.
I decided that doing just the right amount of work, physical and mental, was the way to go.
Listening to some other people's accounts, my problem was not as severe as theirs. Even so, it was very debilitating and distressing for my family and me, sleeping most of the time.
I think it was five or six years before the M.E. cleared. I don't know. I think there are some left-over symptoms but my M.E. did end! That's the point I want to make. Even though things might seem hopeless, the condition does not need to continue forever.
Can some aspects of this disease be psychosomatic? How dare I suggest such a thing, having been a victim myself?
I was suddenly cured, that's how it seemed to me, however, maybe I was already 'coming out of it', I don't know.
One evening I took my mother, aunt and a second cousin to a Catholic healing service where some people came through the congregation and prayed over any person who wanted to. I asked prayers for different members of my family but not for myself.
To my surprise, as they prayed I felt warmth, or rather, heat deep inside my chest. During the prayers I could feel heat rising from my head. A woman was praying with her hands over me but not touching me and she remarked on the heat.
From that moment, I swear that I was 'cured'! I drove back home like I was floating on air. I felt alive again. A wonderful feeling and I never descended again to the terrible fatigue that I previously had nearly all the time.
For a variety of reasons, I no longer attend any church these days but I cannot deny that this truly happened, it was so dramatic.
Make of it what you will.
That's what happened.
Whether this story helps or not, I do not know.
Redheadbk, I wish you all the best - there CAN be a bright future for you.
Cheers,
Pablo2

mutopian
New Member


Date Joined Jan 2010
Total Posts : 5
   Posted 1/23/2012 1:39 PM (GMT -7)   
Hi Bucci. No I haven't read the Insights into Lyme book, but I was diagnosed by a Lyme Disease specialist who was also a G.P. here in the U.k. I've done a bit of research about the disease online and it has similarities to other pathogens I am/may also be infected with. None of them are easy to get rid of! However I am progressing slowly with my own treatments which I'm quite happy with.
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