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Old 11-13-2005, 12:38 PM   #1
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Join Date: May 2005
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NatashaW HB User
To UkiahValleyMom...

Hello!!
You have been so helpful to me. I hope you don't mind my bugging your for a few minutes....

Since you seem to have infinite knowledge of CFS and treatment, could I ask for some help??

I am going to my family doctor this week. He is a wonderful doctor who is always willing to listen. He admitted that he isn't an expert of CFS and actually said he would like to learn more . I wanted to go to the appt. with a list of treatment options for CFS that I had read about. Could you help me? What should I list?? What are the BEST and safest options?? He is also wonderful in that he will research anything for me that he doesn't know about. I need to take a step in the direction of some kind of treatment. Rest and vitamins just ain't cutting it....

Thanks in advance!!
NatashaW

 
Old 11-15-2005, 11:20 AM   #2
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ukiahvalleymom HB User
Re: To UkiahValleyMom...

NatashaW,
Good morning! It may be good afternoon, just realized the time...

My choice of treatment options came to an intergrated one of prescription meds, natural hormones, supplements and herbals, rest, change in diet, and drink purified water no tap.

Prescription meds: originally started by pcp, addressing the non restorative sleep, fatigue and pain symptoms. Dr Holtorf adjusted the meds and added fludrocortizone when my blood pressure and temp dropped too low, plus I wasn't able to keep myself hydrated. I also was placed on antibiotics; like Zithromax, Doxicycline, Cipro and now, Omnicef for treating the underlying infections of Mycoplasma Pneumonia. Also, alernating between Nystatin and Diflucan for the Candida infections. Kutapressin to treat the HHV6, CMV, and EBV viruses along with boosting the immune system. There were some other temporary ones through the treatment process.

To let you know I tried many different Anti D's, Cymbalta works the best with my chemistry, trazodone for sleep, and Ultram (tramadol) for pain. I do have Norco for pain, when its the worst! Haven't had to take for a few months...when ever I did it was only for a day or two at the most.

The natural hormones have been in response to the visual symptoms and low test results in the thyroid, adrenal, and other hormone levels. (Which really help!)

Supplements, NADH, a liver detox; Liver care or Liv.52, NT Factor a Mitochondria fatigue fighter, B100, a digestzyme, muti-V at dinner, and others based on body needs. All of these are through my FMS/CFS doctor.

I have also had IV treatments ie: a type of Meyer's Cocktail and others; shots to boost the immune system ie: B12...and Trigger Point Injections, all these were done at Dr Holtorf's office.

It's really hard to share since I can't direct you to websites at all. However I noticed at the top of the Health boards you can search inside this website or outside with Google, start there.

The best place to start with your doctor =pcp-Primary Care Professional is addressing your 10 major symptoms. Write those down ahead of time.

Do note all of your symptoms as soon as possible, keep a small journal daily tracking them. It is a good idea to also track your temperature ( 3-4 times a day,) make sure you wait 15min after drinking or eating. If you have low blood pressure track that as well. Note the parts of the day you feel better than others, too.

Do you lean more to CFS or FMS symptoms?

Have a Complete Blood Count and a Comprehensive Metabolical Count done, if not done yet.

If anything is out of range or on the very low or very high part of the range they should be addressed, noting the system effected and treated with change in diet, supplements or meds.

As you read about the finding with CFS, there are dysfunctions that cascade down through the body causing more problems.

Later have the infectious disease panel along with EBV,CMV, HHV6, and any Candidas testing done to see if you are positive in any. These can be treated with the above meds and diet changes.

I decided to become proactive and did my own research and evaluations of treatment protocols for myself. I came to terms and after weighing my options I chose the avenue and believed 100% in the one I took, and I still do!

Please take the time to do the same for yourself, take this as a time of learning, gaining knowledge, setting boundaries, becoming disapplined, and focusing on living a healthier lifestyle.

Please write again and let me know how it went with your doctor, too
"All things happen for the good..." uvm

 
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Old 11-16-2005, 08:35 AM   #3
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Join Date: May 2005
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NatashaW HB User
Re: To UkiahValleyMom...

Thanks for the comprehensive reply!!

The good news is...I have a great doctor. The bad news is...he doesn't know much about CFS, and doesn't really know where to send me to get help. I believe he has sent CFS patients to infectious disease specialists before with bad/no results.

My appt. is tomorrow and the first treatment I am going to request is B-12 shots. That seems like the easiest way to start. I mentioned them before but I think most doc's think that if there isn't a b12 deficiency, then a person doesn't need the shot (I am bringing in literature that proves otherwise).

After that, I will address ALL other treatments I have read about. If someone would just tell me, go to this doctor, at this adress, they will help...I would be SO happy. But I am doing nothing and my doc doesn't know what to do!

I saw an info commerical on the other night about these b12 tablets that you put under your tongue that are supposed to be as good as shots.
Also, would I have to give myself the shots?

I think I will print out your message and give it to my doc if that is OK with you..it is so full of good info.

What about an alternative medicine specialist??

I just started new (and expensive!) high quality acidophilus to see if it helps, IF I have a candida problem.

Fortuantely, I don't have FMS symptoms, just CFS. It all started after I got mono 16 months ago, although I had had mild/moderate unexplainiable fatigue for years. I have also suffered from bulimia and depression, asthma, GERD, and MVP. I am 22 years old. I do take trazadone for sleep.
Are b-12 shots hard to give yourself?? Or does the doc do it?? If my doc says no, where do you think the next step should be?? What kind of doc deals in vitamin shots??

Thanks again
P.S. If you get a chance, could you check out my post "SUBLINGUALB12"...it is a b12 supplement that is supposed to be as good as shots

Last edited by NatashaW; 11-16-2005 at 09:39 AM.

 
Old 11-17-2005, 11:48 AM   #4
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Join Date: May 2005
Posts: 430
NatashaW HB User
Re: To UkiahValleyMom...

Hey,

Got my first B-12 shot today. Am getting one a week for three weeks and will see how they work. How long are the shots ususally continued for??

 
Old 11-17-2005, 04:59 PM   #5
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Join Date: Nov 2005
Posts: 6
otgirl HB User
Re: To UkiahValleyMom...

This is a new thread from a new person. I also found your replies very helpful. I am going to another doctor with the same clinic, just in another city. (I am sure the protocols will be similiar, based on symtoms and bloodwork.) Anyway, my question is: How expensive are all of the individual treatments (not the office visits...I know the price already). Also, do they sell vitamins, hormones, herbs at this clinic. Just wanted to prepare myself for the "sticker shock". Thank you- otgirl.

 
Old 11-18-2005, 08:45 AM   #6
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Join Date: Feb 2005
Location: Ukiah, CA
Posts: 270
ukiahvalleymom HB User
Re: To UkiahValleyMom...

Quote:
Originally Posted by NatashaW
Thanks for the comprehensive reply!!

The good news is...I have a great doctor. The bad news is...he doesn't know much about CFS, and doesn't really know where to send me to get help. I believe he has sent CFS patients to infectious disease specialists before with bad/no results.

My appt. is tomorrow and the first treatment I am going to request is B-12 shots. That seems like the easiest way to start. I mentioned them before but I think most doc's think that if there isn't a b12 deficiency, then a person doesn't need the shot (I am bringing in literature that proves otherwise).

After that, I will address ALL other treatments I have read about. If someone would just tell me, go to this doctor, at this adress, they will help...I would be SO happy. But I am doing nothing and my doc doesn't know what to do!

I saw an info commerical on the other night about these b12 tablets that you put under your tongue that are supposed to be as good as shots.
Also, would I have to give myself the shots?

I think I will print out your message and give it to my doc if that is OK with you..it is so full of good info.

What about an alternative medicine specialist??

I just started new (and expensive!) high quality acidophilus to see if it helps, IF I have a candida problem.

Fortuantely, I don't have FMS symptoms, just CFS. It all started after I got mono 16 months ago, although I had had mild/moderate unexplainiable fatigue for years. I have also suffered from bulimia and depression, asthma, GERD, and MVP. I am 22 years old. I do take trazadone for sleep.
Are b-12 shots hard to give yourself?? Or does the doc do it?? If my doc says no, where do you think the next step should be?? What kind of doc deals in vitamin shots??

Thanks again
P.S. If you get a chance, could you check out my post "SUBLINGUALB12"...it is a b12 supplement that is supposed to be as good as shots
NatashaW,

I'm back, yesterday was our son's 17th B'day so we went out of town for the day...shopping and then are family all got together at a restaurant for the celebration.
First, how was your doctor appt? Where you able to get the B-12 shot? About the B-12, I'll have to read your post, it'll have to be tomorrow, I have PT this morning and back out of town to complete some business, so I'll be gone most of the day, again.

The B-12 shot will give you a temporary boost, depending on how fatigued and symptomatic you are. You may try B-100's too, make sure you have eaten cause it will upset you tummy a bit. My pharmacist, has watched me through this illness and made the recommendation, talk to your doctor about. The body will use what it needs of it.

My choices in doctors for me are anEndocrinologist (the doctor I see at teh center is one) or an Osteopathic one. My first choice is the Fibromyalgia and Fatigue Center.

A friend called in need for a ride, got to run so I'll get back to this and the other posts as soon as I can. uvm

 
Old 11-19-2005, 03:01 PM   #7
Senior Member
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Join Date: Feb 2005
Location: Ukiah, CA
Posts: 270
ukiahvalleymom HB User
Re: To UkiahValleyMom...

Quote:
Originally Posted by NatashaW
Hey,

Got my first B-12 shot today. Am getting one a week for three weeks and will see how they work. How long are the shots ususally continued for??
NatashaW,

Hi, how was your doctor appt? And the B12 shot? It's hard to answer you question, in how long the shots are continued for? BC, everybody's treatment is different. The treatment you'll receive is based on your symptoms, lab results and physician's beliefs.

Your doctor or doctors will take your medical history down and then should start treating your symptoms, and based on you response to the treatments tried will create a wellness program for you.

keep persevering, you'll find what works for you, uvm

 
Old 11-19-2005, 03:27 PM   #8
Senior Member
(female)
 
Join Date: Feb 2005
Location: Ukiah, CA
Posts: 270
ukiahvalleymom HB User
Re: To UkiahValleyMom...

Quote:
Originally Posted by NatashaW
Thanks for the comprehensive reply!!

The good news is...I have a great doctor. The bad news is...he doesn't know much about CFS, and doesn't really know where to send me to get help. I believe he has sent CFS patients to infectious disease specialists before with bad/no results.

My appt. is tomorrow and the first treatment I am going to request is B-12 shots. That seems like the easiest way to start. I mentioned them before but I think most doc's think that if there isn't a b12 deficiency, then a person doesn't need the shot (I am bringing in literature that proves otherwise).

After that, I will address ALL other treatments I have read about. If someone would just tell me, go to this doctor, at this adress, they will help...I would be SO happy. But I am doing nothing and my doc doesn't know what to do!

I saw an info commerical on the other night about these b12 tablets that you put under your tongue that are supposed to be as good as shots.
Also, would I have to give myself the shots?

I think I will print out your message and give it to my doc if that is OK with you..it is so full of good info.

What about an alternative medicine specialist??

I just started new (and expensive!) high quality acidophilus to see if it helps, IF I have a candida problem.

Fortuantely, I don't have FMS symptoms, just CFS. It all started after I got mono 16 months ago, although I had had mild/moderate unexplainiable fatigue for years. I have also suffered from bulimia and depression, asthma, GERD, and MVP. I am 22 years old. I do take trazadone for sleep.
Are b-12 shots hard to give yourself?? Or does the doc do it?? If my doc says no, where do you think the next step should be?? What kind of doc deals in vitamin shots??

Thanks again
P.S. If you get a chance, could you check out my post "SUBLINGUALB12"...it is a b12 supplement that is supposed to be as good as shots
NatashaW,

This is part 2:
Based on your symptoms and health issues in this post...if you haven't had the blood work done, it would be a good idea to do so, and if your pcp doctor specializes in general medicine ask him to refer you to a endocrinologist, who specializes in the endocrine system, by addressing the problems in this area, you may begin to feel better.

Also, Testing for EBV, CMV, HHV6, and other chronic viruses at the cellular level, like any of the Candidas, treating them will lessen the symptoms.

I feel I should clarify something, my treatment has been through IV's in regards to the B12, tho, occasionally I have had Glutothione/B12 shots. All these have been administered by the Doctor or Assistant.

The injections I have done at home have been Heprinin in the past and now, Porcine Liver Extract.

best wishes, uvm
I did look up the "Sublingual B12" and will respond to that thread...soon.

 
Old 11-19-2005, 03:56 PM   #9
Senior Member
(female)
 
Join Date: Feb 2005
Location: Ukiah, CA
Posts: 270
ukiahvalleymom HB User
Re: To UkiahValleyMom...

Quote:
Originally Posted by otgirl
This is a new thread from a new person. I also found your replies very helpful. I am going to another doctor with the same clinic, just in another city. (I am sure the protocols will be similiar, based on symtoms and bloodwork.) Anyway, my question is: How expensive are all of the individual treatments (not the office visits...I know the price already). Also, do they sell vitamins, hormones, herbs at this clinic. Just wanted to prepare myself for the "sticker shock". Thank you- otgirl.
otgirl,
Hi, welcome,

The individual treatments can range from $30.00-125.00, depending on what it is, for me. The Fibromyalgia & Fatigue Center where I go, as I stated before on different posts, is a wholeness treating center, I have purchased supplements, natural hormones (come from a compound pharmacy), herbals. All have been prescribed during treatment, and there have been prescription meds, too.

Some of the supplements that can be purchased cheaper and do not change the affect, I buy elsewhere. There are some of the supplements that are only available through a health care professional, those I get through the center. I've tried other brands, not the same and went back to the originals.

My insurance has covered some, it doesn't for supplements and herbals.

My view point is, that I have felt and seen results good enough to make it all worth it. To have a quality of life back so that I can enjoy things again, last night, I sang with my band, feeling stronger then ever, it was so much fun, there was no aggravation of symptoms. (Before, singing wiped me out, I would have to be lifted off the stage, so fatigued and drained my body would be shaking.)

I'm so thankful, uvm
I have been involved with a christian recovery program since 1999, during the last two years with this illness, I had to let go of most of the ministries I was a part of, that was very hard to do. The band is part of the ministry, to be able to sing and worship again, means alot to me and to be able to lead a women's support group again, I feel like a milestone has been reached!

Last edited by ukiahvalleymom; 11-19-2005 at 04:10 PM.

 
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