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Old 11-07-2007, 04:37 PM   #1
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Just Diagnosed

Hi everyone,

I found out on Friday that I have cfid's. The past 2 1/2 months have been pretty hard. I'm barely able to work 10 hours per week. I just started taking B12, cod liver oil, and other vitamins in the hopes of being able to improve so I have more quality of life. It's kind of hard to adjust to this but I'm trying to stay positive.

I've been doing some online research and have been alarmed at what I've found. There's so much uncertainty with this. The doctor wasn't able to tell me what sort of life I'll be able to have. I've always been active and I was even able to fulfull one of my dreams and complete my PhD last year. Now my life is at a standstill. I have the brain fog though it's not too bad. I have signs up reminding me to turn off the stove.

What seems to help you all in treating this? Any words of hope/wisdom/advice? I could sure use it.

Thanks,
Terri

 
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Old 11-09-2007, 05:38 PM   #2
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Re: Just Diagnosed

Terri would you mind me asking how you were diagnosed and how this came about? I ask because I think I have CFS but have not been diagnosed with it yet. I have an appt. next week but I am concerned that they will just blame it on depression. Thank you

 
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Old 11-10-2007, 09:27 PM   #3
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Re: Just Diagnosed

Hi Janart,

I saw a rheumatologist who specializes in autoimmune diseases because I had a postive ANA test. He looked at my symptoms, medical history and said I have CFS. The symptoms I've been experiencing are extreme fatigue that is different from regular fatigue (hard to describe), joint pain, brain fog (short term memory problems, word finding problems, repeating myself), headaches that are new and are there all the time now (I never used to get headaches), dizziness, sometimes feeling faint, heart palpitations, a strange and dramatic increase in anxiety and extreme difficulty sleeping (which can occur with CFS though not everyone experiences it). At this point I can function maybe 3 hours per day. With all the research I've been doing people's symptoms can vary. I'd recommend writing down a list of your symptoms (prioritizing which ones concern you most), medical tests you've had done, family history, serious illnesses, surgeries etc. and when your symptoms began. Also include how your symptoms are affecting your life. As you probably know Dr's don't have much time to spend with patients. I gave him a list of all the above and on the page noted that I have a copy in my personal file which let the doctor know that I'm documenting my visits. Luckily my doctor read what I wrote and took my symptoms seriously. Best of luck to you. Post when you find out... Terri

 
Old 11-11-2007, 08:14 AM   #4
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Re: Just Diagnosed

thanks Terri for the info. Hopefully someone will give you a reply. Sorry for horning in on your thread. Good luck to ya (:

 
Old 11-12-2007, 08:49 AM   #5
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Re: Just Diagnosed

Hi Tic6 I am curious on what test your doctor has ran on you? Is his specailty Chronic Fatigue?

In my own opinion each of us could have different things going on that just aren't being addressed by doctors.

I had Lyme Disease, Epsteing Barr virus's, Cytomeglovirus, Babesia, Bartonella, Chlamydia Pnuemoniae bacteria..and was told I had Fibro, and Chronic Fatigue....

Took many many years to get 2 doctors to treat me for these things...ugh!

I couldn't live with what other doctor's were telling me that I had to live with whatever I had and I was bi-polar, and all of this other crazy stuff...

One doc started treatimg me for Lyme...and the second doctor is treating me for Epstein Barr and Cytomeglovirus, Babeisa, Clamydia Pnumoniae...And oh my gosh I feel better than I have in the last 20 years...

I would keep looking for answers...Majority of Chroinc Fatigue and Fibro can be treated and you could be back on your feet...

Have a great day!


 
Old 11-12-2007, 12:42 PM   #6
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Re: Just Diagnosed

Hi Jojo,

What tests would you suggest that I have the doctor run? I'm having trouble getting him to run any tests other than the standards ones.I do have a positive ANA but who knows what that means. The rheumatologist was very kind but he just gave me the diagnosis and didn't run more tests. I want to get tested for lyme disease as well as other viral stuff. How did you get your doctor to do more than the standard HMO save money response? Thanks!

Terri

 
Old 11-12-2007, 07:02 PM   #7
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Re: Just Diagnosed

Quote:
Originally Posted by tlc6 View Post
Hi Jojo,

What tests would you suggest that I have the doctor run? I'm having trouble getting him to run any tests other than the standards ones.I do have a positive ANA but who knows what that means. The rheumatologist was very kind but he just gave me the diagnosis and didn't run more tests. I want to get tested for lyme disease as well as other viral stuff. How did you get your doctor to do more than the standard HMO save money response? Thanks!

Terri
Hi JOJO Im Kay
I was in october disonised with congestive heart faliure. I had been short of breath for about 2 months and finally i got so bad I had to go the er for shortness of breath and my left arm hurt alot Im 57 female and am distivated to say the least at wht they found
i have been in the hospital 2 times in as many weeks and still suffer from the swollen ankles that the medicine does'st seem to help. I live in Arkansas used to live in California
wish I still did. I know what you are going thru and you can't find the answer either
just band with people that have your intrest and I do I need the same thing. Take care

KAy

 
Old 11-13-2007, 08:27 AM   #8
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Re: Just Diagnosed

HI Terri,

Anyone can have a positive ANA, you can look on line and find out a lot of information. IT does not mean you have Lupus. Many people freak cause they feel this is their only problem. What I mean is yes this is one test they run for Lupus BUT there are many other reasons why a person can have a positive ANA. I always had a positive. There are many many reasons why a positive will show...From various Autoimmune Diseases, infections, gastroinstestinal diseases, hormornal diseases or even drugs can cause it to show a positive. So if a test comes out positive then a person needs to figure out the WHY's....I had many doctors telling me that I had lupus...Which infact I had all of the other conditions I mentioned in my other post...

I did not have this wonderful Healthboard and people to talk to when i was going threw my search. So I did like majority of people and went to EONS of doctors, for many many years. I started out like everyone and thought...Hey if i go to a doctor he/she will beable to tell me what is wrong...In reality 99 per cent of them "do not" look out side of the box. They only know how to mask a problem. So I had many many years of doctors telling me there was nothing wrong, live with the pain, learn to live with what I had, go to the shrink, have a MRI...cat scans, ect..ect...And of course each one of them had a different diagnoises....And of course I just got worse as time went on...

I finally found a doctor in Grass Valley that listened to me. (He is now retired) and that was a plus...that he listened to me. he started treating me for Lyme even though I didn't have a positive test.(According to the CDC) But I had all the symptoms. He retired 3 years into treating me and i couldn't find another doctor to look outside of that box...I kept getting the you have fibro/chronic fatigue all over again...SO I started going to a doctor that I had already knew of that treated patients for Fibro/CFS. His office is in Sacramento. He studies and does research at Stanford. He looks at differetn Protocols that other doctors are doing. I mean research doctors. Not the run of the mill doctor. He treats he patients with antibiotics, antivirals, and different supplement protocols. he Looks for Chlamydiae Pnumoniae, and EBV, CMV and other herpes. Also checks the thyroid function.

Once a person is diagnoised I will say it takes a while to get back your quality of life. There is years of hit and missing on what will help. Depending what is wrong of course. But I found that it is great to have someone that looks outside of that box. That looks into bacteria (s) and virus (s) , protozoa's and such as the culprit for the problem.

Such as did you know that the herpe virus's can cause death, heart problems, muscle problems, mental problems... ect if left untreated?
Well every flippin doctor I went to with my high EBV CMV titer test told me that these virus's don't cause problems...

I now live 3 hours away from this doc. But I can do phone counsults.

To look for Lyme bacteria (s) the test are not accurate as I am finding that majority of test are not accurate. So to go to a doctor that specailizes in bacteria (s) is a way to find help the quickest. The best lab to have Lyme test done is Igenex Labs in Palo Alto. But then my test from there even came out negative. So this is why you need a doctor to go on symptoms along with a test. IF you get a lyme test done I would push to have the Western Blot done. It can pull up bands. These bands can tell a person some of the bacteria (s) they are dealing with. Now i had bands show but at that time I was not as knowledgable about this stuff ...I could of pushed doctors to listen to me more if I had known what i know now...(maybe)

Lyme is all over California. And there is alot of it in the Bay Area. A person does not have to be bit by just ticks anymore to get lyme. It is a cousin to the syhpllis bacteria. And we all know what Syphillis can do to a person. The lyme bacteria (s) can be transmittled by any blood sucking bug..from one host to another, some say even sex, pass it through from Mother to child...ect....One does not get it just from ticks anymore. I have read that over half of the population has Lyme bacteria (s).

The other bacteria that I was speaking of you will find a lot of information by walking the net with your fingers. The Chlamydia Pnumoniae bacteria acts like the Lyme bacteria and is even more easily spread...Such as sneezing, hands, ect....They are finding many people that have M.S. Fibro, demintia, alsmeirs,COPD...and many other conditions have this bacteria and with antibiotic treatment they can get better....

Some researchers to read up on are Dr. Charles Stratton, The Vanderbilt protocol. that is for the C.P. bacteria...I do believe you can find my doctor also on the net...Dr. Michael Powell and his Fibro treatment center.

Dr. Martin Lerner and Dr. Shoemaker are great resorces to learn about Epstein Barr Virus and Cytomeglovirus....

Dr. Striker in San Fran is a good Lyme doctor Terri if you decided to go that route. There is also Dr. Stephen Harris to read up on.

I hope this sheds some new light on what "could" be the problem. The thing I have learned is through all of this. I knew it wasn't my mind or stress making me run fevers, or breaking out in rashes, or making me mental, or causing my legs and arms not to work...It was bacteria (s) , virus's, protozoa's problems breathing, heart pains...and such...I am thankful I found this doctor and other people that can look outside of what is crammed into our heads by other so called medical doctors...

If I can be of more help let me know.....

I am sorry you are having to go through this. But you are the one that knows your body and mind. I found I had to be my own advocate and find answers on my own....

Knowledge is power...so the more you understand about these could be problems better the direction you can look.

have a great day!

Hugs

 
Old 11-13-2007, 08:35 AM   #9
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Re: Just Diagnosed

Hi Kay and Welcome to the healthboards! This is one of the best places to learn and to have support.

So you are another Californian. I was born and raised here. I now live in Portola (Plumas County) up in Northern Ca. I just lovvvveee it here.

I am sorry to hear you are having problems. I would like you to read over my post above that I wrote to Terri. I am wondering if you could see any of yourself and your symptoms in this?

Did the doctors give you any reason on why the shortness of breath? Is this normal for you? I mean did it just come on all of a sudden? do you have other symptoms? My doctor put me on Plaqunil to kill off protozoa's. Beings I have been on antibiotics for years and this still seemed to be one of my problems. It does seem to be helping...

I hope you can find some answers here.

Tell us more about what you are going through. It is a great way to vent

Hugs coming your way!!!

Jodie

 
Old 11-13-2007, 03:52 PM   #10
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Re: Just Diagnosed

Hi Jodie,

Thanks for the information about the tests. Do you know the name of the doctor in Sacramento? I would be willing to travel the 2 hours (I live in Alameda) to see him. I could combine the trip with seeing my dad who lives in Auburn.

Plumas County is so beautiful! Though not in Plumas County I lived in Chico many years ago and loved it. I'll need to move out of the bay area eventually because it's too expensive to live here but I've been concerned about not being able to have access to good medical care. I'm finding out though that the medical care here isn't that great.

Thanks so much for the info about the tests. I see my doctor on Monday. Today I go in to get the 24 hour holter monitor as I've been having chest pains and racing heart.

I will also look at the research of the other doctors you recommended.

Hugs,

Terri

 
Old 11-13-2007, 07:45 PM   #11
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Re: Just Diagnosed

Hi Terri,

I see Dr. Michael Powell, he has the Fibromyalgia/Chronic Fatigue Center in Sacramento. He is on University Ave.

I lived in Auburn also a couple different times..My Mom lives in Auburn also...

I don't mean to be nosey but I am thinking you sound too young to be having heart problems. I know I had really bad pains in my chest...and irregular heart beats...either too fast or too slow...It was all caused from what I am dealing with...

I want you to know that "if" you have any of these conditions I spoke of. And say you find the right treatment for you...It takes a few years to start feeling as though you will be cured. Many people think they should see a quick relief. I have been doing antibiotics for 8 years...it took atleast 5 too feel like things were working...but by then there was sooooo many things to unravel

I hope you do find some answers!

Got you in my thoughts and Prayer's!

Jodie

 
Old 11-19-2007, 04:24 PM   #12
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Re: Just Diagnosed

Quote:
Originally Posted by tlc6 View Post
The symptoms I've been experiencing are extreme fatigue that is different from regular fatigue (hard to describe), joint pain, brain fog (short term memory problems, word finding problems, repeating myself), headaches that are new and are there all the time now (I never used to get headaches), dizziness, sometimes feeling faint, heart palpitations, a strange and dramatic increase in anxiety and extreme difficulty sleeping (which can occur with CFS though not everyone experiences it). At this point I can function maybe 3 hours per day.
Hi,

Just wanted to let you know that I had all the same symptoms you had and got the CFS stamped on my forehead and more or less told to live with it. After much research and many doctors finally found out I was hypothyroid that had been left untreated for three years by ignorant docs because they went strictly by labs instead of listening to my symptoms. I ended up with adrenal fatigue as a result of the untreated hypo. Not to mention raging candida and EBV due to my immune system taking such a hit from the untreated hypo.

It's 3 1/2 years down the road and I am soooooooo much better and back to functioning at a near normal capacity. I'm treating the thyroid and adrenals and all of the above symptoms have slowly disappeared.

Before you allow yourself to have the CFS stamp put on you please make sure there aren't other treatable issues going on. Good luck and I wish you well on your health journey.

Deb

 
Old 11-21-2007, 08:40 PM   #13
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Re: Just Diagnosed

Hi tlc6

Just one urgent advice: Please stop taking cod liver oil!

It's very rich on Vit.A and high doses of Vit.A will surely have the opposite effects that you are aiming for. If you take it for Vit.D, then consider other sources, including sun light. Vit.A in high doses does damage the thyroid gland (among others) and can severly intoxicate your body!

 
Old 11-26-2007, 02:13 PM   #14
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Re: Just Diagnosed

Hi Oliver25,

I just read your post. I hadn't heard that cod liver oil could cause such problems. My acupuncturist had prescribed it. Can you give me any more information? I'll also search the web. Thank you for telling me.

 
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