Diagnosing CFS

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Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 9/15/2008 1:32 PM (GMT -6)   
I posted a while ago regarding my original diagnosis of Lyme disease. I have done alot of reading on CFS but would like to ask those of you that actually have this illness some questions.
In order to be diagnosed do you have to have memory, cognitive or concentration problems? Is that one of the "requirements?"
I am still trying to figure out if I have been diagnosed properly or am I wasting my time taking mega doses of abx in order to battle the Lyme. I am going through a really rough time with severe exhaustion and truly am not sure what to do. It feels like someone has taken a turkey baster and is sucking the life/energy out of me. I feel totally drained. I also have hypothyroid and adrenal insufficiency but have been treated for this for 2 years. I have no muscle or joint pain. My only other symptom is muscle twitching/burning in my L calf.
Could someone who has been diagnosed please let me know what most doctors consider the major symptoms of CFS and how they come to this conclusion. I have been sick for 4 years and just really want to know what the correct diagnosis for me is. Thank you..

Regular Member

Date Joined Jun 2008
Total Posts : 63
   Posted 9/25/2008 3:04 PM (GMT -6)   
The major distinguinshing factor for CFS fatigue is its delayed response....you can order a test called MFP from dr. sarah myhill (UK)..this doctor claims that this is one of the perfect diagnosing test for CFS..costs you £245.

Regular Member

Date Joined Jul 2008
Total Posts : 78
   Posted 10/24/2008 1:35 PM (GMT -6)   

I really think you have lyme disease. I am not a big believer in just waking up one morning and feeling bad, then never getting better. There has to be a cause.
Your lyme doctor should tell you that it can take years to treat lyme but you will get better.
If you have the herx reaction to the antibiotics chances are - it is lyme. Perhaps you have another tick-borne infection. There are several that cause many different symptoms.

Please email stephanie@turnthecorner.org to get the name of a lyme literate doctor in your state.
You can also email me with any questions lauradghrs@hotmail.com

Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 10/29/2008 3:45 PM (GMT -6)   

I see a LLMD in NY who happened to be in the movie "Under our Skin". He told me I could have remission but he can't tell me I will be cured. I have been tested for all co-infections and do have Bartonella.

It seems so unbelievable that after all the abx I have been on including IV that 4 years later I still have constant chronic fatigue. I guess I will just have to keep on and see if I can get well.

Regular Member

Date Joined May 2008
Total Posts : 23
   Posted 12/17/2008 3:46 PM (GMT -6)   
Hi Kim,

Sorry you're suffering so much. It IS truly hard to distinguish Lyme from CFS often since the two overlap so much. Four years of abx seem sufficient time to judge whether you've been helped at all. I have heard that fatigue is one of the last symptoms to improve in Lyme dx is the fatigue. How have you felt when you've been off the abx? Any co-infections such as viruses (HHV, enteroviruses, coxakie, etc) all play an important role as well.

Lastly it sounds like you're in good hands, hang in there and best of luck to you!!

Veteran Member

Date Joined Jul 2007
Total Posts : 715
   Posted 1/2/2009 12:40 PM (GMT -6)   

I am back on IV abx and was told this would be long term. I had major improvement while on IV last year but had to have the line pulled due to complications. I am hoping I will do as well this time around. I had quite a herx 2 weeks after starting so I guess it has hit the target. They are also going to treat the different forms of Lyme using Zitro IV. I have only been on abx off and on for 2 years and 2 years I was undiagnosed.

I also have Bart and Babesia and was also tested for all the viruses but nothing showed. Thanks for your post!

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