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Old 09-16-2005, 05:04 PM   #1
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NatashaW HB User
Has anyone with chronic mono/CFS had any success with a specialist??

I have been positive for mono for over a year and was just tested again today and i KNOW it will be positive. My doc's keep mentioning a specialist to me, but they never seen to follow up on that. What kind of specialist would I see, anyways? Would it even help? If I request to see a specialist my doc will make the appt for sure, but I don't know if It will even help.

TO THE WOMEN:
Does your CFS and fatigue seem to get MUCH worse when you are menstrating?

 
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Old 09-22-2005, 07:21 AM   #2
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kiya HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

Quote:
Originally Posted by NatashaW
I have been positive for mono for over a year and was just tested again today and i KNOW it will be positive. My doc's keep mentioning a specialist to me, but they never seen to follow up on that. What kind of specialist would I see, anyways? Would it even help? If I request to see a specialist my doc will make the appt for sure, but I don't know if It will even help.

TO THE WOMEN:
Does your CFS and fatigue seem to get MUCH worse when you are menstrating?
It used to until I stopped mensturating.

I'm not 100% sure, but I think there are CFS specialists in certain parts of the UK (don't know where you are, sorry!), but mainly if you want a referral, it tends to be to a general physician who then says "take antidepressants, do graded exercise and attend cognitive behaviour therapy". None of which are helpful ideas for me, but I know those things can help some people.

 
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Old 10-11-2005, 02:43 PM   #3
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ukiahvalleymom HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

Quote:
Originally Posted by NatashaW
I have been positive for mono for over a year and was just tested again today and i KNOW it will be positive. My doc's keep mentioning a specialist to me, but they never seen to follow up on that. What kind of specialist would I see, anyways? Would it even help? If I request to see a specialist my doc will make the appt for sure, but I don't know if It will even help.

TO THE WOMEN:
Does your CFS and fatigue seem to get MUCH worse when you are menstrating?
I go to the Fibromalgia and Fatigue Center in California, I know that they are now located in many states across the country. If you are located in the UK, I have read about specialists located there, I would have to look back through all my papers I've kept over the last two years. For I can't remember off the top of my head.

Yes it will help, I have light at the end of the tunnel! I am seeing positive results from treatment. Another doctor that is worth seeing is an Endocrinologist, mention this to you pcp.

My (.)'s have caused my symptoms of CFS to worsen. I also tested positive for chronic neurotoxins from Sick Building Syndrome, which also has a major inpact on (.)'s...I am in treatment for removing the toxins, I'll let you know how it goes next month.

The specialist can address those issues and help you feel better.

Hope this helps, uvm

Last edited by ukiahvalleymom; 10-11-2005 at 02:45 PM. Reason: Spelling error

 
Old 10-12-2005, 07:04 AM   #4
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damz68 HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

Quote:
Originally Posted by ukiahvalleymom
I go to the Fibromalgia and Fatigue Center in California, I know that they are now located in many states across the country. If you are located in the UK, I have read about specialists located there, I would have to look back through all my papers I've kept over the last two years. For I can't remember off the top of my head.

Yes it will help, I have light at the end of the tunnel! I am seeing positive results from treatment. Another doctor that is worth seeing is an Endocrinologist, mention this to you pcp.

My (.)'s have caused my symptoms of CFS to worsen. I also tested positive for chronic neurotoxins from Sick Building Syndrome, which also has a major inpact on (.)'s...I am in treatment for removing the toxins, I'll let you know how it goes next month.

The specialist can address those issues and help you feel better.

Hope this helps, uvm
ukiahvalleymom, is the sick building syndrome the cause of your CFS? Has any of your co-workers got sick with CFS?

 
Old 10-12-2005, 10:22 AM   #5
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ukiahvalleymom HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

Quote:
Originally Posted by damz68
ukiahvalleymom, is the sick building syndrome the cause of your CFS? Has any of your co-workers got sick with CFS?
damz68, I believe it is the cause of my CFS, however, I'm still trying to understand it all. There is documentation that those who get FMS/CFS are predisposed genetically.

I was in the best shape ever, working out feeling ontop of the world...the symptoms started just prior to losing my dad. I remember going to work out and not being able to make it around the circuit, wondering why did I feel so weak...then within 2 hours I felt 70 years old and in extreme fatigue and pain.

My symptoms started with the neurological ones, feeling dizzy, vision problems, hypoglycemic tendency, feeling like dropping, adreneline not working right (felt the fight or flight at odd times and it seemed like the valve would stay open and not close.) As the days went by more symptoms appeared, a lung infection and fatigue started...it cascaded from there.

There have been at least 5 out of 20 employees who have had many symptoms like mine over the last 3 years. One girl was dx'd with CFS and Active Epstein Barr. Another FMS/CFS and Active Epstein Barr; both eventually went on permanent medical leave. I struggled working for the last 2 years...finally gave in and am on medical leave (won't be going back.) Another, had been on medical leave is now back to work there. And another has not been dx'd yet...same symptoms I had initially...is very fatigued, falls a sleep driving, and her doctor has found nothing wrong yet?!

I have experienced, feeling back to normal after time away from the office and treatment, being energetic, no pain, no fog for as long as a month... then within 1-3 days of being back to work the symptoms start back up with each passing day it cascades and by the 4th week I can hardly function I feel so very sick as if there is infection raging through every cell, tissue and organ of my body.

Today...I have no brain fog, vision is very good, more energy, sleeping better, irritable bladder and irritable bowel is gone, the tremors have subsided as long as I stay away from chemicals, I'm allergic to cleaning house

I had been pain free, then I used the chemicals last Monday...it's been subsiding...today its noticable in my elbows and hips, not bad, tho!! I haven't taken a pain pill.

Sorry about rambling, what have you been doing for treatment? uvm

 
Old 10-12-2005, 08:10 PM   #6
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Arms HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

UK...

i feel like i have many of the same symptoms, i've had them for over a year...they seem to have been slightly better lately, but like you i was in very great shape and worked out a ton and then it hit me one day.

My vision is poor some days
I feel like i'm drunk sometimes, like i'll be standing there and suddenly feel like i'm swaying even though i'm not
Extreme fatigue, especially after i excercise
Brain fog
Inability to remember short term
and the one that kills me is i can picture words in my head and how to pronounce them but when i go to speak them i am unable

all these symptoms come and go, some days are extremely bad, some days not so much....you experiencing any of the things i mentioned that you did not?

 
Old 10-13-2005, 11:00 PM   #7
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ukiahvalleymom HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

Quote:
Originally Posted by Arms
UK...

i feel like i have many of the same symptoms, i've had them for over a year...they seem to have been slightly better lately, but like you i was in very great shape and worked out a ton and then it hit me one day.

My vision is poor some days
I feel like i'm drunk sometimes, like i'll be standing there and suddenly feel like i'm swaying even though i'm not
Extreme fatigue, especially after i excercise
Brain fog
Inability to remember short term
and the one that kills me is i can picture words in my head and how to pronounce them but when i go to speak them i am unable

all these symptoms come and go, some days are extremely bad, some days not so much....you experiencing any of the things i mentioned that you did not?
Oh yes!! all those symptoms I experienced; it was like that all the time in the beginning, then as I started the phases of treatment there where days that were much better. For me it appears that the underlying issue is neurotoxins. Which caused me to have a series of health issues: orthostatic intolerance, adrenal disfunction, a compromised immune system, and cellular level infections. With treatment each time I have improved. I am hopefull to be feeling much better within the next 4 weeks.

Have you been able to find a doctor who is able to treat you? And help you to maintain balance in your life?
uvm

 
Old 10-18-2005, 12:28 PM   #8
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Winnieie HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

In many cases of mono and cfs, gamma globulin DOES help. I dont know why the cdc says it doesn not, there are two conficting reports in JAMA ten years apart where the earlier one says it does help, and the later says it does not, tho other reports say it does. That is the reason i posted the abstracts of those medical journals talking aobu the use of either IV immonuglobulin, or intrmuscular gamma globulin. I went to see a doctor and got blood work, because he found it to be successful in some people with CFS. four years ago he first treated me with antivirals which got me out of bed( i had mono three times). I read an article somewhere once of a guy who said it wiped out his mono in two days. Now to find a doctor who uses these in treatiment is another story. IF your state has a CFS organization, they would have a doctors list on their webpage who specifically treat this type of stuff. Any other doctor will probably accuse you of been depressed or pychosomatic.

Last edited by Winnieie; 10-18-2005 at 12:29 PM.

 
Old 10-18-2005, 03:32 PM   #9
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Location: Ukiah, CA
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ukiahvalleymom HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

Hi, want to ditto Winnieie's message in regards to Gamma Globulin.
My doctor is treating me with Gamma Globulin shots, too. Sometimes, I wish that I lived closer to office (9&1/2 hours away. He has tried to get my insurance co. to approve the IV treatment, so far no luck. uvm

 
Old 10-23-2005, 07:43 PM   #10
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ceerose67 HB User
Lightbulb Re: Has anyone with chronic mono/CFS had any success with a specialist??

Quote:
Originally Posted by ukiahvalleymom
damz68, I believe it is the cause of my CFS, however, I'm still trying to understand it all. There is documentation that those who get FMS/CFS are predisposed genetically.

I was in the best shape ever, working out feeling ontop of the world...the symptoms started just prior to losing my dad. I remember going to work out and not being able to make it around the circuit, wondering why did I feel so weak...then within 2 hours I felt 70 years old and in extreme fatigue and pain.

My symptoms started with the neurological ones, feeling dizzy, vision problems, hypoglycemic tendency, feeling like dropping, adreneline not working right (felt the fight or flight at odd times and it seemed like the valve would stay open and not close.) As the days went by more symptoms appeared, a lung infection and fatigue started...it cascaded from there.

There have been at least 5 out of 20 employees who have had many symptoms like mine over the last 3 years. One girl was dx'd with CFS and Active Epstein Barr. Another FMS/CFS and Active Epstein Barr; both eventually went on permanent medical leave. I struggled working for the last 2 years...finally gave in and am on medical leave (won't be going back.) Another, had been on medical leave is now back to work there. And another has not been dx'd yet...same symptoms I had initially...is very fatigued, falls a sleep driving, and her doctor has found nothing wrong yet?!

I have experienced, feeling back to normal after time away from the office and treatment, being energetic, no pain, no fog for as long as a month... then within 1-3 days of being back to work the symptoms start back up with each passing day it cascades and by the 4th week I can hardly function I feel so very sick as if there is infection raging through every cell, tissue and organ of my body.

Today...I have no brain fog, vision is very good, more energy, sleeping better, irritable bladder and irritable bowel is gone, the tremors have subsided as long as I stay away from chemicals, I'm allergic to cleaning house

I had been pain free, then I used the chemicals last Monday...it's been subsiding...today its noticable in my elbows and hips, not bad, tho!! I haven't taken a pain pill.

Sorry about rambling, what have you been doing for treatment? uvm
UkiahValleyMom,

I think it would be a good idea for someone in Management to have a study done to test the "air" at your workplace. There is a known test that will see if there is any mold being pushed around by the HVAC, (Heating and A/C system). Maybe the system needs to be sanitized, cleaned, and filters changed reguarly, or maybe something else is causing poor air quality. Are people still allowed to smoke inside of the bldg? Many things could cause people to get sick but there are laws that mandate that workers be able to work in a safe, sanitary, healthy work environment. I have worked in Civil Engineering for almost 20 years and HVAC systems need periodic maintenance and Hepa filters are often used to keep the air quality clean. If they are not changed often enough or the system is not large enough to exchange the inside air properly, people can and will get sick. For your coworkers health, you should have someone push the issue.

Respectfully,

Carla

 
Old 10-25-2005, 05:54 PM   #11
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ukiahvalleymom HB User
Re: Has anyone with chronic mono/CFS had any success with a specialist??

Quote:
Originally Posted by ceerose67
UkiahValleyMom,

I think it would be a good idea for someone in Management to have a study done to test the "air" at your workplace. There is a known test that will see if there is any mold being pushed around by the HVAC, (Heating and A/C system). Maybe the system needs to be sanitized, cleaned, and filters changed reguarly, or maybe something else is causing poor air quality. Are people still allowed to smoke inside of the bldg? Many things could cause people to get sick but there are laws that mandate that workers be able to work in a safe, sanitary, healthy work environment. I have worked in Civil Engineering for almost 20 years and HVAC systems need periodic maintenance and Hepa filters are often used to keep the air quality clean. If they are not changed often enough or the system is not large enough to exchange the inside air properly, people can and will get sick. For your coworkers health, you should have someone push the issue.

Respectfully,

Carla
Carla, I agree with you, whole heartidly. We have been a smoke free environment, our state has made it against the law for smoking inside businesses and restaurants, thnak goodness.

However, some of the employees, who smoke, take breaks, and must stand outside somewhere near where the air inflow is, bc the smell comes through the HVAC system.

I'm getting stronger, I have started pursuing the process to have evidence backing me up so my employers will take this seriously, knowing how sick I've been. Want o help my coworkers, uvm

 
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