I saw the doctor this afternoon and he told me that he believes it is CFS. He has been seeing CFS patients for 20 years and studying it. He advised B12 shots weekly for the next 3 months and then we can go from there. Does anyone here actually have normal days? I just keeping seeing forever as being like it has been. I am so weary of being weary. Has anyone had any good results with B12 shots?

thanks

Shannon

B12 shots only work if you're deficient in B12- and they can test you to find out.
B12 for nonspecific fatigue is absolute bunk.

B12 shots only work if you're deficient in B12- and they can test you to find out.
B12 for nonspecific fatigue is absolute bunk.

they tested my B12 levels a month or so ago and said they were fine....

I didn't mean to be discouraging, it's just that there are a lot of so-called remedies for fatigue, some peddled by well-meaning doctors and others by less scrupulous doctors, that lack scientific proof of efficacy or have been proven to be ineffective. B12 is one of the remedies lacking scientific verification.

By all means give it a try if your insurance is willing to pick up the tab, or if you have the cash to spare. Personally, I balk at the idea of trying natural remedies that haven't been proven to live up to their claims, but I'm a natural born skeptic.

Beware the "placebo effect" if you try alternative remedies. Most will work short-term if a person believes they'll work. Lots of people get hooked into investing financially and emotionally in a supposed cure for their fatigue (or other ailment), and then blame themselves later on when their "miracle cure" quits working or seems less effective.

I know what you mean about feeling weary of feeling weary. I hope your doctor is willing to work with you to treat your symptoms and continues to explore different potential causes of them. I'm already working on a list of unusual infections, etc., that I'd like my doc to test me for. "CFS" is a catch-all label for undiagnosed health problems...with a little time, a lot of research, and perseverance, it's possible to pinpoint the exact culprit(s).

Wishing you good health.

I would like to suggest two possibilities that worked for me.

1. Have your thyroid checked. My doctor never bothered to check that hormone and it turned out mine was low. Hypothyroid symptoms may include but are not limited to: dry skin, hair loss, fatigue, memory problems, constipation and weight gain.

2. Have you taken antibiotics in the last year? If so you may have an intestinal yeast infection. The antibiotics kill the bacteria that eats the yeast. The yeast flourishes in your gut with nothing to keep it under control and some people are sensitive to the yeast biproducts. There is no test for this condition but some symptoms may include: frequent loose stool that isn't diahrea, fatigue, frequent upset stomach, foggy brain feeling, concentration problems, also possibly burning tongue, sore lips, sore throat, and yeast infections in the vagina or mouth. Treatment is 1 month on Nystatin (a prescription needed) and zero sugar (yeast lives on sugar). If you have had the condition for a long time it might take multiple rounds of treatment. In my case my wife kept getting yeast infections even after using the one pill drugs. She phoned the pill manufacturer and after hearing the story they suggested that I was reinfecting my wife and that I should be treated. My doctor refused saying it wasn't possible, but my wife insisted so I took Nystatin. I thought I had no symptoms at all. But within a week my fatigue and brain fog lifted and I was amazed how poorly I had actually been feeling.

3. If you are a guy, have your testosterone levels checked. Low testosterone symptoms include, fatigue, irritability, muscle loss, depression and memory problems.

thanks both of you. I did have my thyroid checked, it came out normal. I've also had lyme, mono, glucose, folic acid, ana, thalemessia, and a bunch more test done too. I'm not a guy so the testosterone thing hopefully doesn't apply. ;)

I completely agree that CFS is a catch all and after only dealing with doctors for 3 months, I think they jumped the gun. I have Kaiser so well... if you know Kaiser you know that they will say anything to get you out of their offices. I'm still doing lots of research on everything. One good place I have to start is that through a CBC, it was discovered that my ferritin levels were seriously low. The first CBC in Jan, showed them to be at 5, minimum normal 22, average around 3. The first dr I saw put me on massive amounts of iron supplements. A month later, they were at 8. The next dr told me that the iron would not help the ferritin and that my actual iron level (as opposed to the ferritin) was normal so to stop the supplements. Well, in the mean time I moved to a much healthier diet and last month the ferritin was at 12.

As anyone heard of anything that might cause that. The infectious disease dr wrote it off saying that it was "an incidental finding" meaning that there is nothing wrong.

Thanks for all the help and time

Shannon

Yes, B - 12 work only if you take them.. If you are low on B-12, you will know becuase you will get the nasty taste when you take B-12 Vitamin. Trust me I have CFIDS and tried ever vitamin out their... See my post " If you need help, I am here" in their I talked about the vitamins I take that actually work.

How did your doctor conclude you have CFIDS , Why ? Tell me more..

Have you been checked for CMV, EBV, or Human Herpes 6 ?

Most CFIDS, 90% of them are caused by Lyme Disease, CMV, EBV, Or Human Herpes 6 or unkown virus of herpes family.

I am sorry, but for some our immune system just doesnt hold up much.

Has your doctor checked your Natural Killer Cell ? If you have CFIDS, then They should be Abnormal.

How did your doc check your immune system ?

Ask him to run,

Lympocyte Panel . It includes your CD 4/CD8, B-Cell, Killer Cell, and much more.

If you have CFIDS, than your T2 are active than T1 ( "read my post ").

Also , your immune system is overactive and you need to control it so its not overactive.

Check for those herpes virus and let me know.

I have CFIDS so I know. It sucks, especially when you are young.

Are those tests easy to arrange where you are? It's taken me months just to get doctors to do FBC, ESR, thyroid etc. let alone EBV and CMV.

here is the cbc that was run (levels from jan.)... I am going to call them and get copies of all the other blood tests run too because at this point they ran so many I don't know what was and wasn't run ya know?


Name Level Normal Range
Creatinine .9 -<1.2

Ferritin 5 22-291

Glucose Random 95 60-159

TSH 1.9 0.2-5.5



WBC x 10-3 8.5 3.5-12.5

RBC x 10-6 5.27 3.60-5.70

Hemoglobin 12.6 11.5-15.0

Hematocrit 40.5% 34.0-46.0%

MCV 77 80-100

RDW 16.7% 11.9-14.3%

Plt x 10-3 321 140-400



Neutrophils 62% 50-70%

Lymphocytes 26% 20-50%

Monocyte 9% 1-14%

Eosinophil 3% 0-4%

Basophil 1% 0-2%

your lympocytes are on low down, but that doesnt matter, because they are still within the range. Your WBC count looks good and so does rest of your CBC.

Remember, most of the CFIDS patient do not have ABNORMAL CBC count or any other results, but yet we may feel like yack feeling. Why ? , becuase of our immune system, for some they get over the cfids like no tomorrow for others its just another dam thing that will mess your life up.

Yes, most doctors will not do CMV, or HHV 6 , or 8 test because for some they dont know how to do it and how to read the results for some doctors they think, CMV or HHV 6 is not responsbile for CFIDS, if you get a doctor who tells you that, DROP HIM.. It means he is not up to date with medical knowledge.

Mono etc.... are first cause of CFIDS...

Do you have any immune system test done ?

Ask you doctor for Complete Lympocyte Panel.

Let me know.

Thank you
Ben

Thanks Lodoka! My dr is really good, has been studying CFS and treating CFS patients for 20 years. (so he says) They did run a mono test (negative) but I also wasn't sick with anything shortly before the fatigue started. I was researching some this morning and found something that made sense. I had something really bad happen in Jan of 2004. I started feeling fatigued in July/August of last year. There was a lot of stress and emotional stuff that Jan and I am wondering if that may have pushed me in that direction? Obviously it wouldn't have caused it but if I was already heading down that path maybe it would have gotten me there faster? I dunno... I'm no dr and you are a ton more knowledgable than me when it comes to this.. thoughts?

Does anyone here get any weird feelings in their brain? What do they feel like?
I get them and they feel like i am going to lose my balance or something like that as well as brain fog. I dont mind the brain fog so much as the weird feelings.I only used to get brain fog but now after 12 years I get these strange sensations, although they are a bit better now that they were 6 months ago.

martin

I classify my weird head feelings under 'brain fog'. And yeah, it's like feeling off balance or as if I'm about to faint. I get it mostly after exercise, but only for a couple of minutes. Still quite disturbing.