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11/03/2009 12:00 PM

I need to find a dr to treat my cfids and cvid

Buttercup50
Buttercup50  
Posts: 21
Member

I'm sorry to not have introduced myself but I'm 52 and have been living and dying with cfids,cvid and depression,among other things I was diagnosed in 1987 with Chronic Fatigue by Nancy Klimas when it was just starting to be diagnosed. I suffer with an incredible loss in stamina,energy that 'caused me to lose my job and eventually my career as an RN. I don't know if it's just a low day or what just when my "dr" that I have now said that they treat cfids w/ exercise (WHAT?) and I tell him just "exercising in the grocery store try to buy food for my family almost leaves me flat on the floor at the check out" So he infers that I must be doing something wrong. I'm so tired of this,what quality of life is this? I am a 52 year old nurse and I am retired on disability in a lot of pain,no one will even try to help me around here in "exclusive Vero Beach. I think I should move to Oregon if you get my drift. Oh and I'm still caretaking my 84 year old mom "serving her" when she is capable of many things. I just took care of my Dad on hospice and he died on 9/3. I don't know if our living together is fair to either of us or because our interactions sans my Dad are still new. Sorry I didn't mean to dump all this on you. I appreciate any advice and comments,Thanks so much.
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11/04/2009 03:52 PM
fluffyluggage
fluffyluggage  
Posts: 4722
VIP Member
I'm an Advocate

Hey Buttercup,

Welcome to the forum. Please don't feel sorry or feel bad about "dumping" anything on us! We've all been there before, and we all know how you feel. Also, this is where you should be coming to vent! That's what we're here for. LOL Smile

I'm not at all familiar with CVID, so I had to look it up. It looks like your treatment options are immunoglobulin in a number of different forms, but other than that, I have nothing else I can offer you. It would seem you need an immunologist to be able to treat you, so I'd suggest you check with the NIH, as funding here in the US goes through them. They should have a listing of doctors who are well-versed in CVID. That's really my only suggestion as to what you can do with regards to the CVID, and I'm sorry for that, but I really just have no other clue. Maybe others here can offer some suggestions?

As for the CFS/CFIDS, there are a number of things I'd say. I'd go so far as to suggest that your doctor is an idiot, and you need to look elsewhere! I think that we all know that exercise isn't how CFS is treated. That's ridiculous. Yes, exercise is a valuable component of treatment, but in moderation, and only to the extent that the patient can handle. A CFS patient can't handle exercise when other issues aren't being treated. Have you been tested for a B12 deficiency? Have you been tested for anemia? How about sleep apnea? Have any of these areas even been looked at at all? Have you filled out any questionaires about your sleep habits? Has your doctor considered the possibility that you might also have other co-morbid conditions such as FMS? I mean, there are sooooo many things that might be going on that you can't just say "well, go exercise, and you'll get better..." SHAME ON HIM!

The other things to consider are things like probiotics, B12 supplements (even if you aren't deficient, or are borderline, they help provide energy for those of use with CFS, and they seem to really make a huge difference in what we can do!), medications or supplements to help even out our sleep patterns, iron supplementation or cooking with iron skillets and eating more iron-rich food (if you need it), supplements or medications specifically made for people with CFS (yes, they DO exist!), etc.

Take a look around the forum and see all the things we've suggested in the past. Also, I am going to (in the next day or 2) look at the episode of Dr. Oz again where Dr. Teitelbaum was on, and I will go over what was discussed, and report it. I'll include a really good summary and give a better description than what I did before in the original "Dr. Oz and Dr. T" post. I'll have more info on that soon. Altho I was disappointed, there was some good info there.

Also, I have a book I'm reading that may offer some new solutions that I'm trying to get through and I'll post what I find. For now, I think you need a second opinion. You are entitled to that, and you have to remember that you need to be an active participant in your own medical care. Don't settle for the crap being spewed by someone when you know it's just crap. Doctors have been educated, yes, but don't let their arrogance get the better of you--when you KNOW you're being treated inaccurately, and all the fibers of your being are screaming at you that it's wrong! Doctors simply have more college education than you, but that doesn't make them better than you, nor does it make them right more often than you--you know your body better than they do! Keep that in mind, and know that you need to take charge here.

I wish you luck, and hope that you will find what you need here. Please know I'm here for you if you need me. Also, I'd love to hear what happens from here on out with your care, what you find out, and where you go, etc.

Hugs,

jen Smile


11/04/2009 08:00 PM
Buttercup50
Buttercup50  
Posts: 21
Member

Thanks so much Jen,your response gives me hope. I will look around the forum and see what else I can learn. Again,thanks!

11/05/2009 11:36 AM
fluffyluggage
fluffyluggage  
Posts: 4722
VIP Member
I'm an Advocate

NP! That's what I'm here for, that's what we're ALL here for. And anything that you want to add to a discussion, or question--please do. If you need to get clarification on a topic, bring it up. If there's something you don't understand, please ask. We want to keep an open dialogue going here, so we want your input. If you have something to add, please don't hold back! We're all here for each other. This is a pretty tight group, I'm very proud to say. I know we aren't always here every day, but we're here for each other, and we are tight! Smile

Hugs,

jen Smile


11/09/2009 05:51 PM
debcrog
Posts: 6
New Member

Don't give up! I have been pushing for help for my son for months. Many doctors either don't recognize CFS or aren't well educated about it so I have educated myself. Find a professional who treats chronic fatigue and believes it is real. I did this by talking to everyone I knew and by getting on websites like this. One thing I read suggested seeing a biochemist which we are. He understands how deeply you have to look inside the body to find out what is wrong. You may have to pay for extensive blood work yourself but it is worth it. Also acupuncture and massage are helpful. Keep going. There are more aad more people with this illness and it is real!

Deb

Post edited by: debcrog, at: 11/09/2009 05:52 PM


11/11/2011 05:56 PM
jnich88VT
jnich88VT  
Posts: 10
Member

As crazy as it sounds, one brand of doctors I've found that have helped and been are chiropractors. Mine has me on a high volume vitamin and naturals diet that has really helped me.

12/08/2011 02:54 AM
Sunnyorange
 
Posts: 14
New Member

I think I have been diagnosed with cmv, cytomegalovirus, normally reserved for those with immunocompromsised systems, or very stressed systems like mine, giving me a recurrance of a universal virus in all of us over 40. I feel like you with severe cognitive dysfunction, including brain dysfuntion where normal connections are not being made. Almost all of us carry cmv, but few of us get sick with a recurrence of it like I have. Please have your doc test for this. If it is negative, then aggressive testing on other cognitive functioning. We all know how much cognitive functioning affects our everyday life.
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