CFS without a virus

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aquarias
Regular Member


Date Joined Mar 2006
Total Posts : 296
   Posted 6/11/2006 6:17 PM (GMT -7)   
Hi, I was wondering if anyone has been diagnosed with CFS without a virus showing up.  I have had all of the symptoms of CFS, I was diagnosed by an infectious disease doc with CFS, but all other docs said they were not convinced I have it because there were no viruses on my bloodwork.  I have been sick 8 months with this "mystery illness".  I am able to do a lot more now then in the beginning, but tonight I feel horrific, I feel so so run down, it is beyond fatigue, it is a horrible inhumane run down feeling.  Can anyone relate?  I have been diagnosed with severe anxiety disorder and I wonder how much that is playing into the way I feel?!?  I can't believe we can fly to the moon, but they can't tell me what is wrong with me!!!!

Foreign
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Date Joined Jul 2004
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   Posted 6/11/2006 7:32 PM (GMT -7)   
Hello aquaria.
I was diagnosed with CFS as well as FMS...and no virus showed up in my bloodwork as of yet but i'm still pending some blood work.

Don't know if i was helpful or not.

Mel
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hippimom2
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   Posted 6/12/2006 6:15 AM (GMT -7)   
I know how frustrating it is. I'm pretty sure you can have CFS without a virus showing up. If an infectious disease doc diagnosed you I would think that diagnosis would stick.
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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aquarias
Regular Member


Date Joined Mar 2006
Total Posts : 296
   Posted 6/12/2006 6:49 AM (GMT -7)   
Thanks for replies, I am just so stuck between CFS or anxiety because a lot of people from the anxiety forum tell me they have been extremely sick with just anxiety/panic disorder alone.  I just don't know.  I have never had fevers or swollen glands but I have had dizzi ess, fatigue, headaches, sore throats, muscle aches, and dark circles under my eyes.  I am not sure anxiety alone can do all of that!  I am so confused and really don't want to live like this!!  I am not suicidal, but I don't know how much more fight I have left in me.  Thanks for listening.

bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 6/12/2006 9:10 AM (GMT -7)   
Hi Aquarias,

I never knew ther was blood test for CFS.

do you sleep?

bucci

aquarias
Regular Member


Date Joined Mar 2006
Total Posts : 296
   Posted 6/12/2006 10:56 AM (GMT -7)   
Yes I sleep but only becuase I take 3 mg of xanax at night.  I  dont think there is a blood test for CFS, but the doctors often see a virus like ebv or mono before the CFS starts.

wayne1966
New Member


Date Joined Jun 2006
Total Posts : 3
   Posted 6/19/2006 2:31 PM (GMT -7)   
Hello All
my mother is a very tired woman she was diagnosed as anemic doctors do not know what to tell her.I was introduced to all natural all organic liquid sea vegatables with aloe juice in it (Tastes like cherry) I take two ounces in morning This product is great I feel like a new man I have more energy, clear mind, no more achy knees had hard time doing stairs, (I`m only 39 yrs old) I also suffered bad cramps before I would have a bowel movement the pain is no longer there. I avoid hospitals as much as possible.
So anyway MOM has doctors apointment on wed I hope the doctor gives her the okay. Would love to see her enjoy life again
the company gives out free full size bottle to try
if any one is getting desperate and want to try nutrition which is key part for the body to heal itself let me know
GOOD LUCK TO ALL THAT HURT

aquarias
Regular Member


Date Joined Mar 2006
Total Posts : 296
   Posted 6/19/2006 5:22 PM (GMT -7)   
I would like to know the product name.  I actually had some one who had CFS tell me he cured himself by putting a few whole aloe leaves in a blender with a little water, and then heating the liquid, and then drink it.  I tried a few times, but I was scared to continue, because I didn't know if it was safe.

wayne1966
New Member


Date Joined Jun 2006
Total Posts : 3
   Posted 6/20/2006 1:18 PM (GMT -7)   
Drop me an email and I will send you a link to site.This product is all organic and Natural. Nutrition is the key to keeping body functioning right.
Wayne 

aquarias
Regular Member


Date Joined Mar 2006
Total Posts : 296
   Posted 6/20/2006 3:42 PM (GMT -7)   
Wayne,  amym2178@yahoo.com thanks.

KCLyme
Regular Member


Date Joined Jun 2006
Total Posts : 316
   Posted 6/20/2006 9:59 PM (GMT -7)   
Hi aquarias,

I think the source of your problem may be Lyme Disease. It would account for ALL of your symptoms including anxiety (and even Wayne's mother's anemia). Plus, one study of CFS patients showed 90+% of them had the bacteria responsible for Lyme.

Don't be skeptical if you've only heard things about Lyme like "deer tick bite", "bullseye rash", and "flu-like symptoms", because that is an extremely misleading portrayal of it. Here are a couple of links where you can start to get more info on it. I especially recommend the Symptoms doc on the second site.

Hope this helps. Good luck!


http://ottermusic.com/lyme/articles/indicators.html

http://www.lymeinfo.net/lymefiles.html

aquarias
Regular Member


Date Joined Mar 2006
Total Posts : 296
   Posted 6/21/2006 10:21 AM (GMT -7)   
Kc- Thanks so much for that informative link.  It seems I have had about 85% of the symptoms listed there.  I am going to another doctor tomorrow for more bloodwork.  This doctor who is also infectious disease, diagnosed a friend of mine with Lyme disease after she had been undiagnosed for 2  years by other doctors.  I will let you know how it goes.  Thanks a lot.  I am almost hoping it is that, I know that sounds crazy!!

KCLyme
Regular Member


Date Joined Jun 2006
Total Posts : 316
   Posted 6/21/2006 12:51 PM (GMT -7)   
aquarius,

You're very welcome. I was excited when I got diagnosed because it meant I was finally on the road to solving the problem.

Regarding testing, eight months would make you chronic; that's what makes the "standard" test procedures not work well for you. The Western Blot can be OK for screening as long as your doctor interprets it with the chronic effect in mind. Here's a link that explains that:

(LINK REMOVED)

Push for the Bowen QRIBb test if your new doctor won't prescribe antibiotics based on clinical analysis and whatever tests you have. It will cost you $250, but it tests for the bacteria themselves rather than for your antibodies to them so you will KNOW if you have Lyme bacteria in your blood and how infected you are.

Also, I saw your posting on the Lyme forum about exercise. With Lyme, if I have to change planes on a business trip, I can count on being so trashed I can't work on the day after I get back home. I can no longer mow my lawn and can only fertilize it with multiple breaks. I'm just ten weeks into treatment after being infected for many years.

Again, good luck!
 
Please read the forum rules before posting websites!!!

Post Edited By Moderator (Foreign) : 6/22/2006 7:59:01 AM (GMT-6)


aquarias
Regular Member


Date Joined Mar 2006
Total Posts : 296
   Posted 6/21/2006 5:18 PM (GMT -7)   
KC- Were you diagnosed with chronic fatigue syndrome before being diagnosed with Lyme?  I am going to the doctor tomorrow, so I will definately ask for that test.  Thanks so much!!  You didn't have the rash either right?  Do you feel you will recover with treatment?  I am sure you were happy to finally be diagnosed, I would have such peace of mind to know what has happened to me!!

KCLyme
Regular Member


Date Joined Jun 2006
Total Posts : 316
   Posted 6/21/2006 8:06 PM (GMT -7)   
aquarias,

No CFS diagnosis for me; although fatigue has been a major issue. The only time I know I was bit by a tick (not deer) was when I was 7-8 years old; I have no memory of a rash. After intermittent but varying symptoms for 20+ years, I had unexplained hair loss and inexplicably gained weight; developed a weakened immune system, chronic cough, vertigo, hives, night sweats, extreme fatigue, and stabbing abdominal pains. I was diagnosed with asthma (not true), PCOS (polycystic ovary syndrome), then low hormone levels and low T3 thyroid levels (all potential effects of Lyme by the way). There's a lot more to the saga than that, but I don't want to bore you.

I think any diagnosis that is called a syndrome or has only been given a name in my lifetime (like fibromyalgia) probably has an underlying cause that is being missed.

I'm determined to recover completely somehow. I refuse to live my life without health. My doctor says in his experience chronic Lyme is curable 85% of the time; I will be part of the 85.

wayne1966
New Member


Date Joined Jun 2006
Total Posts : 3
   Posted 6/22/2006 12:34 PM (GMT -7)   
Hi kc
could you send me links on the lyme would like to pass on to my mother thanks Wayne
email is themot33@yahoo.com

KCLyme
Regular Member


Date Joined Jun 2006
Total Posts : 316
   Posted 6/22/2006 7:04 PM (GMT -7)   
Foreign,

Exactly which link rule are you referring to as being violated? I read the rules and see none!

Post Edited (KCLyme) : 6/22/2006 8:19:37 PM (GMT-6)


KCLyme
Regular Member


Date Joined Jun 2006
Total Posts : 316
   Posted 6/22/2006 7:26 PM (GMT -7)   

Wayne,

The links are as above unless someone removes them.  Regarding anemia, my mother, sister and I all have Lyme disease and have all been anemic for years.  I have read that iron-deficiency anemia can be caused by low adrenal function which is one of the common effects of chronic Lyme disease and a source of a lot of the symptoms.

If you have trouble with the links, just let me know.  Good luck!


Foreign
Veteran Member


Date Joined Jul 2004
Total Posts : 674
   Posted 6/22/2006 9:35 PM (GMT -7)   
http://www.healingwell.com/community/default.aspx?f=46&m=106997

4. No advertising or links to advertising or "Spam" is permited (including signatures).

Advertising or Spam is defined as posting a link for the purpose of selling, soliciting or promoting by someone that has ownership or other "vested interest" to the web site involved, including efforts to promote other online forums or web sites by web site owners.
If you are a web site owner and have a link that fits into this category that you want to share, please submit it to our resource directory and we will review your submission.
Posts and links about fundraising (including nonprofit fundraisers) are NOT permitted.
Only links to personal home pages are allowed in signatures and member profiles.
Links to helpful web sites (commercial or otherwise) are allowed when they are posted by someone without any "vested interest" AND whose purpose is NOT to solicit, advertise, promote, fundraise, etc.

The web site you posted was selling products.
Did not mean to offend just abiding by the rules.

Mel
Co-Moderator for Fibro
Moderator for CFS
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KCLyme
Regular Member


Date Joined Jun 2006
Total Posts : 316
   Posted 6/22/2006 11:56 PM (GMT -7)   
Foreign,
 
Try re-reading what you just sent me:
 
"Links to helpful web sites (commercial or otherwise) are allowed when they are posted by someone without any "vested interest" AND whose purpose is NOT to solicit, advertise, promote, fundraise, etc"
 
This applies to me.
 
I was abiding by the rules.

aquarias
Regular Member


Date Joined Mar 2006
Total Posts : 296
   Posted 6/23/2006 9:19 AM (GMT -7)   
Kc- I agree, the links were very helpful and they were not giving any advertising!!

KCLyme
Regular Member


Date Joined Jun 2006
Total Posts : 316
   Posted 6/23/2006 3:13 PM (GMT -7)   
aquarias,

Thanks for the the endorsement. I think anyone thinking CFS and/or Fibromyalgia would be wise to read the Lyme symptoms and info so they can rule it out before they accept those diagnoses.

Please let us know when your new doctor figures you out---hopefully.

Best regards.

Foreign
Veteran Member


Date Joined Jul 2004
Total Posts : 674
   Posted 6/23/2006 9:05 PM (GMT -7)   
KCLyme!!
I do appologize I obviously read something wrong and made a bad call.
I thought I was acting accordingly.
I will contact the admin about this and let him make the call.

Take care
Mel


Co-Moderator for Fibro
Moderator for CFS
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Post Edited (Foreign) : 6/23/2006 10:17:11 PM (GMT-6)

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