Is this where I belong? CFS?

[Padro46]

Below is a short history of what I has been going on with me for about a Year and five months now--Have been to several doctors and the only thing I have been told is you have numbers from a past EBV Infection you have Post Viral Syndrome,  I do not think so, however would like to get some Ideas from this forum--PlateletGal has helped me in other forums and has invited me here before--I hope to gain knowledge and suggestions from the group--Thanks Padro46


Man, 47, Morning body temperature (in mouth) 97.6 °F

Current symptoms: fatigue, non-refreshing sleep, feeling cold (not as warm as used to be), back of the head numbness, numbness on cheeks and jaw area, lightheadedness, problems with balance, brain fog, constipation, lack of appetite, but gaining weight.

In Dec 07 the day after having several beers and seafood with friends, I felt tired, lightheaded, brain fog, no appetite.  
In the evening while watching TV, sudde burning pain behind the breastbone, chills, and profound brain fog. Chest pain went away after Prevacide.Next days spent in bed with profound fatigue that lasted to May 08.
During summer months, constipation started. Had at least one bowel movement with blood.

Thyroid hormones seems to be normal
T3 = 28.3 (norm = 20.0 - 38.5 )
T4 = 8.7 (norm = 4.4 - 12.5 )
TSH = 1.2  (norm = 0.3 - 5.1 )

- Two MRis of the head - normal.
- All labs revealed only (Jan 08) elevated EBV_ EBNA IgG (560), and later one normal-low vit B12 =312 (norm = (320), and low vitD = 9,5, after vit D sups = 24,0 (norm = 30-100), and at one occasion low Ca.
- IgG antibodies to HHV-6, CMV, and Parvovirus are elevated.

Other tests were negative: mercury, lead, arsenic, Lyme, mycoplasma pneumoniae, Toxoplasma. Thyroid hormones normal at several measurements.

Many many of the normal blood test--Liver, CBC, Lyme, ETC

Current Meds--Prevacide--Xanax .05

[Beav75]

For CFS this guy is the man..


http://www.cfsviraltreatment.com/

[firemanswife21]

Hi,
You are in the tuff area of symptoms that is so hard to diagnose. Sorry for the bad news. :) I think we all have or are there with you right now. I am. A good fibro indicator is the tender points, with out the tender points the symtoms can vary greatly and go into the Lyme, or CFS. So if you have the tender points it may not be either of those. If you have neurological problems, lightheaded ness, confusion, memory loss, or irratable, you might turn more towards lyme. Chronic Lyme Disease can lay dormint in your immune system untill a stressful time in your life.
Correct me if im wrong, but I beleive that CFS has mainly just physical symptoms, maybe some brain fog, but you wont really get into more severe neuro problems like memory loss and mood swings, and severe irritablility.Unability to concentrate.

So maybe this will help you a bit. Remember if you are going to get a lyme test make sure they send it to IGeneX in Palo Alto Ca. It takes about 3wks but they are the most reliable lab for Lyme. You could ask for tramadol, it is a good pain killer for the mean time. With out it and muscle relaxers I wouldn't be able to get out of bed,.
I just know I have chronic lyme and with out the tramadol I can grab anything and my muscles get so stoved up and sore, then the muscle relaxer makes it so I dont get so stiff. The Tramadol however does not help with the bone pain or joint pain. Nothing touches that but Morphine. They wont give me that with out a dx. Dont you just love it when they pay pass the buck with your ability to function through life.

Anyways good luck and never quit fighting. This is your life and you need to be able to live it to the fullest. You always have a friend here.

[Padro46]

Thanks for the words of hope--Prof. N is a good source will look forward to his thoughts. Padro*

[PlateletGal]

Hey buddy !  I can only tell you that I know of two men who have CFS and both have low testoterone levels. I don't think you fit the CFS criteria (at least not now).... but I thought I would mention it anyhow.

Anyway... stick with us and please keep us all posted.

Welcome to the frustrating zone. I wouldn't wish what you are going through or what I went through on anyone. We all deserve the best medical care and we all deserve answers.

Just to let you know... Prof. Nicolson will be back here at MedHelp using their live webchat on Wednesday, May 20th from 12:00 - 1:00 PM (PACIFIC TIME). I hope you will consider joining in on the session.

[Padro46]

Whats the forums thoughts on a LP for Dx purpose with Neg MRI;s and Blood??

[Padro46]

Thanks so much for your answers--My buddy PlateLetGal told me this group would help--Below is my most recent Endo Testing:

Results from Endo

Testosterone, Total---291                    Scale  250-1100

%Free Testost          1.29        Low     Scale 1.5-2.2

Testos, Free                37.6                Scale 35.0-155.0

LH (luteinizing Hormone)    6.7             Scale 1.5-9.3

FSH                                 5.9              Scale 1.4-18.1

FrT4                                 1.06            Scale  0.89-1.76

TSH                                 1.10            Scale    0.35-5.50

Cortisol, Total,LC/MS/MS    15.9          Scale     4.6-20.6

Prolactin                              5.7           Scale    2.0-18.0

Comments from Endos Nurse---Everything looks Pretty Normal--See You in six months.

[VaBreeze]

Please have that checked out Padro.  Typically, once one is placed on the B-12 injections, it is something that is continued (not stopped because the level is increased at a particular time).  The multi-vitamin with B is not going to do the job.  When the body does not absorb the B-12 properly one would need to continue taking the supplement each day to maintain the proper levels.  

[PlateletGal]

B vitamins don't absorb well at all and are a waste of money. Consider either taking B dissolve tabs or sublingually (drops). I purchase vitamin B complex drops (Nature's Bounty) at Walgreens.

[Padro46]

Thanks for responding--Yes I have been on a B-12 supplement-Primary gave me a months worth of injections which got me from 312--600, Not alot of Improvement--This was in December--Dont know what it is now--Taking a multi-vitamin with B

[VaBreeze]

I agree with PlateletGal.  All of these illnesses are so similar it's often hard to tell what one has.  The bulk of symptoms for CFS are also those for FMS and Lyme Disease.

You didn't mention this, but if you have not included a Vitamin B supplement you should.  A lack of this can cause serious neurological symptoms when left untreated.  It takes years for this to show and usually is detected when one becomes anemic.  

Also, welcome to our forum.  I hope you feel better soon.

Breeze

[PlateletGal]

Hey... do I know you ?  ; ^ )

IMO....your symptoms don't necessarily fall into the CFS category at this point. They sort of somewhere sound like lyme/fibro/CFS mixed in altogether !

The good news is... although you don't have a diagnosis yet, you can be treated. Just like CFS patients who have viruses and bacterias.... they can treat you the same way. I know we are so hell bent on getting that diagnosis, but what I'm learning is to focus on those infections. Your body probably has a successive infection and all of your symptoms could be due to this infection and/or the infection is still contributing and/or creating your symptoms.

I know you've been to numerous specialists. My advice.... consider seeing a physician who deals with difficult cases that western medicine has failed. Naturopathic physicians are such physicians... and they know about the immune system and know which suppplements boost the immune system. Obivously if you have a successive infection, you want to boost your immune system to fight it.



A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:

cognitive dysfunction, including impaired memory or concentration
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
unrefreshing sleep
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
sore throat
Other Common Symptoms

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:

irritable bowel, abdominal pain, nausea, diarrhea or bloating
chills and night sweats
brain fog
chest pain
shortness of breath
chronic cough
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
jaw pain
weight loss or gain

http://www.cdc.gov/CFS/cfssymptomsHCP.htm


Other MedHelp members who have had Parvo infection and currently have symptoms, but no diagnosis:

http://www.medhelp.org/posts/Autoimmune-Disorders-/ANY-ONE-WITH-PARVO/show/793648

http://www.medhelp.org/posts/Autoimmune-Disorders-/EBV--parvo--fever-for-45-months/show/432877