Good morning and thanks all of you who have now given me a reason to start my day.
Question?
When my many lab core tests for Lyme came back negative but the symtoms include memory loss, problems with concentration,
joint and muscle pain, headaches, tender lymph nodes sore throats total inability to perform simple every day tasks and constant rest.
Piled up colds and viruses
I was told by my Holistic Doctor K who uses the Vega machine ,
and his associate Dr. S who uses F Scan and treats the results with Rife , that I had all the bugs associated with Lyme Disease.
I am on all the great Holistic products suggested over time.
My GP is a non believer of chronic Lyme and he has one foot out the door.
My Psychiatrist thinks I am depressed.
I am still in the bog after 2 years but keep trying to "over do" the recovery because cannot sit still.
I am told this brings on setbacks which plague me.
I am fed up and see Dr. P in a few months to be treated for Lyme which ,
I was diagnosed positive with Lyme 16 years ago and , under great stress believe it has resurfaced
My feeling is I get the lyme I believe is present under lid , my immune system will repair itself & fatigue will go away.
How many of you have you found yourself with double diagnosis and do you feel I am on the right path .
The first visit will be $750.00 , I hate to throw more to the wind.
Im with you all now and will not forget you. When I begin to recover I will be here to return my stories J
Posted by n.northernlights (Member # 17934) on :
There will be this test for the xmrv virus in a mater of weeks, check the xmrv threads, and the wpinstitute for news in the close future.
(xmrv really lowers the immune system and makes lyme worse it looks like for now)
How many of you have you found yourself with double diagnosis and do you feel I am on the right path .
J
I was diagnosed with Chronic Fatigue, Fibromyalgia, Myofascial Pain Syndrome, MS, and more.
Then all tests for tick-borne diseases came back positive - except for Lyme WB.
Sounds similar.
4 years later... after much TBD treatment I am at 85 - 90% on most days.
Still have some lingering issues, but Chronic Fatigue, Fibromyalgia et al are a thing of the past.
So - yes, I think you could be on the right path.
Posted by JamesNYC (Member # 15793) on :
CFS is ONLY an acknowledgment that you're fatigued all the time. It is not a "disease" but rather, syndrome of unknown cause and unknown cure. Basically it is a way the Dr can blow you off and duck the responsibility of finding out what is really wrong.
In other words it's nothing.
XMRV has NOT been proven to be anything either. It is in a very early stage of correlation and has a LONNNNG way to go before it is shown to have a role in CFS (the articles ALLL say that).
You probably still have lyme. Lyme is a clinical diagnosis, negative tests are meaningless. And where were the tests done? The Dr that interpreted the test doesn't believe in chronic lyme, so what do you think he's going to see in them?
How was your lyme treated 16 years ago? That will tell you a lot about the chances that you still have lyme.
You may be depressed, you can have depression AND lyme. Besides lyme causes depression, almost everyone on here has depression.
You may have co-infections too.
Going to a LLMD is the way to go. If it's lyme, he'll figure it out. If it's not, then you can investigate other avenues.
Good luck,
James
Posted by timaca (Member # 6911) on :
Also get tested for HHV-6, EBV, enterovirus, Cpn, HSV1, etc.
Do a search using my member number and the words "viral testing" and you will find some info.
Test for lots of things, treat what is most obviously wrong.
Good luck, Timaca
Posted by kim812 (Member # 17644) on :
I totally disagree that CFS is nothing. I became sick 5 long years ago with a viral infection and have been really suffering with unrelenting fatigue and physical exhaustion. I know I had a viral infection because I have the blood test to prove it so to say CFS is nothing to someone like me who is tortured daily with this is just a very wrong thing to write.
This has made my life a living heck for 5 years and is a very unpleasant and uncomfortable way to live. Not to mention the fact that since I don't look sick people don't understand.
Yes I was diagnosed with Lyme 3 years ago but after 30 months on abx I have Zero improvement with the exhaustion so I have quit abx and am looking towards other treatments.
I have shed thousands of tears and have even thought about ending it all cause of what I live with everyday.
I am not going to waste space by listing the 37 medications I have tried or the thousands of dollars in testing...
So please don't ever say CFS is nothing because it has destroyed my life.......
Posted by feelfit (Member # 12770) on :
Kim,
I think that he meant that it is a syndrome (CFS) the cause is unknown. Doesn't mean that your CFS isn't very real! They just don't know the cause.
I have CFS symptoms as well. And a lot of the heart manifestations that come along with CFS. Inverse T Waves and diastolic dysfunction. Not to mention that I feel like I am pulling 4 baby grand pianos behind me when I walk.....
Anyway, a lot of this stuff has overlap. The only condition that has a verified cause is/are TBI's . So those of us who present with CFS or Fibro symptoms and are found to have lyme and associated can at least be explained by a causative affect....
Feelfit
Posted by Need Lots of Help (Member # 18603) on :
I think James is frustrated and he is trying to explain how the medical profession and the insurance company treat Chronic Fatigue, they think it is nothing.
However, the millions of us who suffer with it know it is AWEFUL!!! I have the fatigue so badly that I don't think I will make it through the days. I hate it!! I have several things going on, and I am not sure which caused the chronic fatigue, but if I could get ONLY ONE symptom to go away it would be the fatigue.
So, to the poster, I have Chronic Fatigue, Fibromyalgia, Lyme Disease, Ehrlichia, Cyclomeglovirus, HHV-6, EBV, Depression, and nothing has helped my chronic fatige. In my eyes, treating anything that brings your body down can not be bad....it is very hard to find the one thing that will help YOU. Because we are all different.
Best of luck to you all, Shalome
Posted by kim812 (Member # 17644) on :
Sorry....I have had a rough month with my dad's passing so I am a little sensative right now.
I am also extremely frustrated with the chronic fatigue I endure daily and the problem is I have no other symptoms now. All the symptoms I had along with the CF went away even before I began treatment and have never returned.
So again sorry James I overreacted....
Posted by feelfit (Member # 12770) on :
KIM sory about your Dad Your frustration is understandable.
xx, feelfit
Posted by blaze (Member # 16838) on :
Compare your symptoms to the table in this article (scroll). Lyme isn't the only problem with some on this forum...
That symptom list is endless Blaze, just like TBIs and Lyme. If we all go by symptoms only, it's a useless diagnostic method. Really, where would it end?
Posted by Need Lots of Help (Member # 18603) on :
Kim,
I am sorry you are having a bad time. I feel like the bad times are even harder for us with lyme/chronic fatigue. Our bodies are already on overload, and your father passing is sure to be a huge stressor right now.
I hope you have a good support system.
Hugs!!! Shalome
Posted by coltman (Member # 21272) on :
Is the distinguishing characteristic of CFS - post exertional fatigue? If XMRV damages mitochondria it makes sense.
I never been so ill from fatigue that I couldn't move or get out of bed, which seems to be the case with most severe CFS people
I wonder if XMRV is indeed makes for "uncurable" lyme, since abx are helpless vs virus. And majority of symptoms are actually from XMRV damage
Posted by Yankeedorie (Member # 22723) on :
Hi, I am going to open a new topic in regards to my fatigue .
I hope to get somewhat of a bigger field of what people feel and when
Posted by JamesNYC (Member # 15793) on :
Kim,
I'm sorry to hear about your dad.
It's fine, but thank you for apologizing.
Feelfit and Needs got me correct. CFS is a just a label.
Like most people I was originally diagnosed with CFS. That was back in '87. I was told I would have to just live with it. Great.
I, along with many others, think that many people treated for lyme, but who still have symptoms, may not have been properly treated for co-infections.
From personal experience, babesia is incredibly fatiguing.
Posted by Jenifer (Member # 697) on :
This topic is closed. Please see Yankeedorie's similar topic here.
![[Frown]](frown.gif)
Your frustration is understandable.