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Old 11-03-2005, 12:56 AM   #1
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ukiahvalleymom HB User
The latest news from FMS/CFSIDS dr appt

I ended up having my appt w/ my Fibro & Fatigue Doctor as a phone consultation...this afternoon, 11/02/05. I'm glad on one hand that I stayed home, and passed on the 9&1/2 hour drive down, but felt guilty on the other, because I chose not to be face to face with the doctor, so he could really check me out. My next appt is on 12/08/05 down at the office.

On a scale from 1-10, (1 being least and 10 being most) we went through the symptoms of CFS and/or FMS, I can say:
brain fog 0 with 0 days over the last 12 weeks
brain fatigue 0 with 0 days over the last 12 weeks
body fatigue 0 with 0 days over the last 2 weeks
sore throat today, 0 with 0 days over the last 2 weeks
flu-like symptoms 10 13 weeks ago, 0 over the last 4 weeks
low blood pressure 5, has improved, tho, still flunctuating too much*
Low temperature 5, has improved, have news for the continous.*
CNS hyperactivity along with sound sensitivity 10 13 weeks ago lasting 8 weeks, over the last 5 weeks it has been 0-3 off and on.
all over joint pain had been 10, starting 13 weeks slowly subsiding w/ treatment of the neurotoxins and viruses to 2 weeks at 0.
tender points or trigger points pain 10 w/ 18 active points starting 13 weeks ago, some days down to 0, today 8 only in shoulders and back of hips, not bad!
Tired new symptom, started slowly...found out it has to do with my thyroid...

Then he noted that my lab results showed I had low thyroid, I had been on a a very low dose of natural hormone T3. Based on the latest levels it is being changed to a T3-T4 combo. It should bring my energy level back up, along with my blood pressure and temp.

I've been taking Zithromax since March '05 for the viruses, it seems to not be working anymore...so my doctor has changed the antibiotic to something different, not Cipro, (tho, that worked real well,) another one, I'll see what it is tomorrow when I pick it up.

He also is starting me on Liver Extract (shots), twice a day. It's suppose to have great results for minimizing CFS. I'll let you know

all in all I'm feeling much better, and know once the thyroid meds arrive, I'll be ready to all over, uvm
time to get some zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz zzz's, good nite!

Last edited by ukiahvalleymom; 11-03-2005 at 01:06 AM.

 
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Old 11-03-2005, 05:18 PM   #2
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Re: The latest news from FMS/CFSIDS dr appt

Hey

I really want to find a specialist who can help me. But what kind?? Immunologist? Infectious disease specialist?? I don't know where to turn. Please help.

 
Old 11-06-2005, 05:39 PM   #3
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Re: The latest news from FMS/CFSIDS dr appt

Quote:
Originally Posted by NatashaW
Hey

I really want to find a specialist who can help me. But what kind?? Immunologist? Infectious disease specialist?? I don't know where to turn. Please help.
NatashaW.
Hi, do you live in the United States? uvm

 
Old 11-06-2005, 07:18 PM   #4
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Re: The latest news from FMS/CFSIDS dr appt

Yes. I found a comprehensive list online of docs that treat CFS and I can't believe there isn't one in my city! I live in my state's capital and we have some of the best research hospitals in the country. The closest docs that CLAIM to treat CFS are two 1/2 hrs away.

 
Old 11-07-2005, 10:09 AM   #5
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Re: The latest news from FMS/CFSIDS dr appt

Quote:
Originally Posted by NatashaW
Yes. I found a comprehensive list online of docs that treat CFS and I can't believe there isn't one in my city! I live in my state's capital and we have some of the best research hospitals in the country. The closest docs that CLAIM to treat CFS are two 1/2 hrs away.
NatashaW
I live nine 1/2 hrs away from Dr Kent Holtorf, it has been worth every cent to fly and now drive there for treatment.

Initially, when this all started up again and then stayed back in 2004, with each week and month passing, my symptoms worsened, each doctor confirmed my dx, but really didn't know how to treat beyond Anti D's, Sleep and Pain Meds. I wanted more...then being bedridden, and a shell of what I once was...it wasn't an overnite desision, it took 4 months of...

weighing my options...I could stay with my PCP ( and paddle backwards)...or go the route with the PM doctor (but, didn't really want to)...the Neurologist was not helpful with treatment...my next step would have been a Rhemy... decided to not waste any more time and money.

Made the decision to go for it, (it took another 2 months to get in)...to give Dr Kent Holtorf a shot, from the very beginning when the 24 pge work-up forms arrived at home, I knew that I was at the right place. Others, friends and family my not jump on board as quickily. There was some skeptisism at first, due to not understanding the methods of treatment or the illness! even when their hearts are in the right place...internal results have been more important to me, I felt some within the first month of treatment.

To keep things monitered, I have my pcp recieving copies of all lab and visaversa along w/ treatment info ( copies for me, too). I also meet occationally with the PM doctor to give him the updates and treatment protocol's. One, bc he treats many FMS/CFS patients with meds...but would like to offer them another route and wnats to make sure that my treatment is in the up and up.

What was the type of doctor closest to you?

uvm

 
Old 11-07-2005, 07:24 PM   #6
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Re: The latest news from FMS/CFSIDS dr appt

Some said they were immunolgists, some Infectious disease specialists, some were pain management and some just said "M.D." and said they treated CFS. I can't drive there alone, and I don't want to go if it won't even help because my mom would have to take a day off work. Most of the docs were closer to 3-4 hrs away.

 
Old 11-08-2005, 08:18 PM   #7
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Re: The latest news from FMS/CFSIDS dr appt

Quote:
Originally Posted by NatashaW
Some said they were immunolgists, some Infectious disease specialists, some were pain management and some just said "M.D." and said they treated CFS. I can't drive there alone, and I don't want to go if it won't even help because my mom would have to take a day off work. Most of the docs were closer to 3-4 hrs away.
NatashaW, I lost my last post to this...some how...? it was a response to this post, oh well, must not of been ment to sent...or I goofed

I looked for a doctor who knew the latest treatment for FMS and CF-IDS. One who has successful and updated treatment, not old school.

What I found very interesting and important for treating the symptoms of FMS /CFIDS is the doctor should have experience in hormone imbalances and the effects on the Metabolical System. Along with total knowledge of reading, understanding and treating deficiencies shown through the blood work, knowledge of the latest testings and lab locations for them.

The doctor I see is a hormone and longevity doctor specializing in FMS and CFS, he is an Endocrinologist, previously an Anesthesiologist, and one who also has CFS. He has successfully learned how to treat himself and others.

Can I ask what city and state you live in, if you don't want to say...that' okay. I was going to see if there is one of the facilities I go to, near you.

If you don't want to travel, try looking under Endocrinology, or Traditional and Integrative Medicine; should find it under Holistic or under Preventive Medicine in your local phone book. Do ask questions and interview them to see if you feel good about their knowledge and treatment protocol.

It's really difficult to make the decision to go long distance for treatment, you'll have to do what's best for you and weigh everything out on the table.

Keep me posted and ask away, too. take care, uvm

Last edited by ukiahvalleymom; 11-08-2005 at 08:36 PM. Reason: spelling error

 
Old 11-09-2005, 02:57 PM   #8
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Re: The latest news from FMS/CFSIDS dr appt

Hi again!

I live close to Columbus, OH. I wasn't actually sure if we were supposed to give out our locations..but what's the harm??

Also, have you heard about the connection between candida (sp?) and problems with with the digestive system and CFS?? I read about people using acidophilus to balance the digestive system and having improvements with CFS. However, I have used acidophilus for years and have not seen an improvement. I know there are seveal kinds of acidophilus though...

 
Old 11-11-2005, 10:26 AM   #9
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Re: The latest news from FMS/CFSIDS dr appt

Quote:
Originally Posted by NatashaW
Hi again!

I live close to Columbus, OH. I wasn't actually sure if we were supposed to give out our locations..but what's the harm??

Also, have you heard about the connection between candida (sp?) and problems with with the digestive system and CFS?? I read about people using acidophilus to balance the digestive system and having improvements with CFS. However, I have used acidophilus for years and have not seen an improvement. I know there are seveal kinds of acidophilus though...
NatashaW,
I have heard of the Candida connection, and tested positive for it, plus I had all the symptoms prior to dx, At my first visit to the center I was prescribed Nystatin, later I was put on Diflucan, which I currently take every other day. Due to the digestive problems, I was placed on a natural digestzyme, Liv.52 and NT Factor, a mitochondrial fatigue fighter.

These helped, but it wasn't until I changed my diet in December 15, 2004, (see posts under FMS, that I previously wrote regarding diet changes, probably in early 2005,) that's when I really noticed the yeast symptoms subsiding.

Anyway, I still take Diflucan, bc of the long term antibiotics regime. I have no symptoms currently of the yeast.
uvm
P.S, Cleveland, OH is where a center is located.

Last edited by ukiahvalleymom; 11-11-2005 at 10:29 AM. Reason: an add on

 
Old 11-11-2005, 06:16 PM   #10
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Re: The latest news from FMS/CFSIDS dr appt

Hey Ukiahvalleymom,
Good scores, I cant imagine having 0 fog, it makes me dizzier to think about it. What treatment have you had to get your scores that low? I saw you mention Zithromax. Has that been your treatment? I never heard of anyone using zith for CFIDS/FM unless it was caused by lyme.

I have wanted to try kuttapresin, do you think my lyme Dr. can get it for me, I heard it was hard to get and expensive, true?

Posting those good scores will make us all feel better

Derek

 
Old 11-12-2005, 03:50 PM   #11
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Re: The latest news from FMS/CFSIDS dr appt

Quote:
Originally Posted by damz68
Hey Ukiahvalleymom,
Good scores, I cant imagine having 0 fog, it makes me dizzier to think about it. What treatment have you had to get your scores that low? I saw you mention Zithromax. Has that been your treatment? I never heard of anyone using zith for CFIDS/FM unless it was caused by lyme.

I have wanted to try kuttapresin, do you think my lyme Dr. can get it for me, I heard it was hard to get and expensive, true?

Posting those good scores will make us all feel better

Derek
Hi, in November of '04, along with the above treatment for yeast and digestive problems, I was put on NADH, a natural coenzyme that improves cellular energy, mental clarity, alertness, and concentration, B100's, and an additional FMS supplement.

The Zithromax was prescribed for Mycoplasma Pneumonia that showed up when tested for underlying infections at the cellular level, other active chronic viruses or infections include CMV, HHV6, EBV, and the yeast one. I have also been on Cipro for 10 days, now I'm on Omnicef. These are long term treatments, for instance I am taking Omnicef for the next 3 months, with refills available.

I believe, that NADH and B100 started helping at first. Then with time clearing up the yeast, changing my diet, and fixing the sleep issue have also played a part in the lowering of my scores to '0' fog, memory and cognitive thinking problems.

The antibiotics have played a big part in clearing up the cellular level viruses, which eleviated the symptoms that they cause; flu-like, headaches, sore throats, muscle, tissue and joint aches, tender lymph nodes...

Kutapressin is back available, it is around $29 for 30ml, it doesn't seem too expensive to me. I have paid out of pocket, however, I'm submitting it to my insurance to see if they'll cover a portion of it.

I sure hope that you can see if your doctor can get it for you
I see my doctor in December, I will find out more then, uvm

Last edited by ukiahvalleymom; 11-12-2005 at 04:09 PM. Reason: forgot to complete message

 
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