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Hi again

Am considering going to the fibro and fatigue center in Cleveland, but would like to know the general cost of each visit?? Do you think my insurance would cover any?? Thanks!
[QUOTE=Natalie00]Hi again

Am considering going to the fibro and fatigue center in Cleveland, but would like to know the general cost of each visit?? Do you think my insurance would cover any?? Thanks![/QUOTE]
Natalie00,
So sorry, Nat...I've not been on the internet for most of the last few weeks. I started a high fever on the 2nd of January that laid be up, I've been in bed forever it feels like, and still feel really sick and weak.

I really hope that you'll see this message.

Yes, I think going to the Fibro and Fatigue Center is a very good thing, you will receive a breakdown of each visit; office visit, meds, IV treatments, supplements, etc... You'll receive paperwork including what should be submitted to your insurance for reimbursement, and remember all the lab work is covered through your insurance, and billed prior to, payment is after insurance coverage recieved.

My first appt was in November '04, bc I signed up as a long distance patient I paid $1050.00 up front (covering my first 4 appt.) I could either have appts at the office or by phone consult. It's around $185.00- $245.00 for the office visit, depending on the time length, must be paid in full at the time of the appt.

Then there is the office treatments to be paid for out of pocket at the time of service, reimbursed through your insurance carrier. Prescription meds and compound pharmacy prescriptions are covered by insurance, the later must be paid for and then submitted for reimbursement. Supplements and herbals are not covered, but with the improvement of symptoms I feel they're worth keeping in the regime.

As I stated b-4, the lab work, all the blood tests are covered through your insurance. (I requested copies of all the lab work results to keep in a file at home and also a set of copies sent to my local primary care doctor, too.) You'll be impressed and amazed at the amount of tests done along with the results. My primary doctor has been impressed with the thoroughness of testing and I keep her informed of all treatments and regime changes.

I hope that this does not steer you away, when I decided to go to the Center...I was so sick with all of the FMS and CFS symptoms, medicine prescribed by my pcp doctor, was limited to anti-D and pain, trazodone for sleep. I was almost bedridden, losing weight, fatigued, memory issues, brain fog, body fatigue that would cause spasms, tremors, pain that was escrutiating, especially in the afternoons. At work, it hurt to stand up from sitting, I limped walking across the floor. I felt like I was running on empty, that I pushing myself beyond what I had, I felt like I was going to fall flat on my face. I would have to take a nap before driving 5 minutes home.

If you feel any of the same symptoms above and/or...sore throats, tender lymphnodes, unrested sleep, body dragging...you will find many of your symptoms gone once you start treatment.

It feels good to have my brain back, to have my life back, to know what I'm dealing with, I wish you the best...please keep me posted, uvm
I was wondering UkiahValleyMom, what are you doing to maintain your health now and what kinds of things did they find? I want to go, but can't qualify for their carecredit right now because unfortunately we have had some bad credit issues because of my illness. I may try and go at some point. How well are you functioning now? I'd really appreciate any information you can give or feel comfortable giving. I already know about the cost that's involved. For instance, did you do IVs or just meds and supplements and what are you doing now to maintain? Do you ever backslide if you overdo still? Take care.

Ginny
Good news- I have an appt on Feb 7 at the Fibro and Fatigue Center of Cleveland..I am so excited! I was so depressed these last weeks before I got an appt and talked to the people at the center, now I am hopeful.
I hope you are feeling better Ukiah...

One thing that I am concerned about is I need to have surgery on my sinus' before June and was wondering if any of the treatment or meds they are going to give me will interact with surgery/anesthesia. I guess I will just ask them about that when I get there. I really don't want to have surgery while I am feeling horrible, but my insurance runs out soon (I will be buying my own) and I want to get it done while the cost will be minimal to me.

Thanks again for all the good info.
[QUOTE=GBonnough]I was wondering UkiahValleyMom, what are you doing to maintain your health now and what kinds of things did they find? I want to go, but can't qualify for their carecredit right now because unfortunately we have had some bad credit issues because of my illness. I may try and go at some point. How well are you functioning now? I'd really appreciate any information you can give or feel comfortable giving. I already know about the cost that's involved. For instance, did you do IVs or just meds and supplements and what are you doing now to maintain? Do you ever backslide if you overdo still? Take care.

Ginny[/QUOTE]
Ginny,
I am still under the care of Dr Holtorf (FMS & Fatigue Doctor), I am not at the maintenance step as of yet...so, my regime is quite extensive...in my previous postings I list out all the meds, natural hormones, supplements and herbals I take. I also have weekly massages and Physical Therapy appts; where I am using a treadmill and strengthening machines.

My treatment at th FMS & Fatigue Center includes IV treatment, Trigger Point Injections, Liver Extract Injections, etc...I have had many pain free days along with sleep improvement, energy, weeks of no fatigue, months of no brain fog.

Tho, as you see from my post to Natalie, I am coming out of a recent set back...my pcp doctor felt it was due to my compromised immune system, no one else in my family has been sick...so, it appears she's right.

Just prior to getting the fever, I had another slight set back from using 409 Antibacterial Cleaner. It really played havoc with my neurological system to the point of experiencing brain fog and cognitive thinking problems. Plus feeling very ill and pain level incresed 10-fold. It was bad for a couple of days, once the brain fog subsided I realized what had happened. From what I have learned, this is something that I'll have to deal with for the rest of my life, it's the residue from the toxin exposure which probably set this whole illness off.

Backsliding is an issue at times, There is a fine line when it comes to overdoing it. One thing that I'd like to impress upon; is I am much better overall then I was back in 2003 through the beginning of 2005. The setbacks I experience are fairly minimal compared to the intial onset and prior to getting the proper treatment.

Tho, I hate to admit it stress plays a big part in flare ups and/or setbacks. And the 'stress' doesn't have to be big, due to the change in our body's response system we experience, (adrenal system malfunctions causing a cascade of symptoms.)

This illness teaches us to become self aware, to become more intuned with or body so as to recognize when we're heading into a flare. Along with becoming more disaplined in all areas of our lives in order to maintain balance.

Tell me a little about you and your journey, uvm
[QUOTE=Natalie00]Good news- I have an appt on Feb 7 at the Fibro and Fatigue Center of Cleveland..I am so excited! I was so depressed these last weeks before I got an appt and talked to the people at the center, now I am hopeful.
I hope you are feeling better Ukiah...

One thing that I am concerned about is I need to have surgery on my sinus' before June and was wondering if any of the treatment or meds they are going to give me will interact with surgery/anesthesia. I guess I will just ask them about that when I get there. I really don't want to have surgery while I am feeling horrible, but my insurance runs out soon (I will be buying my own) and I want to get it done while the cost will be minimal to me.

Thanks again for all the good info.[/QUOTE]

Natalie, keep me posted, maybe the FMS & Fatigue Center can help you deal with your sinus problem, too. Anyway, I will keep you in my prayers and am looking forward to hearing about your experience, uvm
Ukiahvalleymom

Glad to hear your doing better for the most part. I have had periods over the last few years where I have gotten somewhat better as well, but in September 2001, I made the mistake of trying to go back to work at home doing transcription and it was just to much and has really set me back a lot, then I had to have a hysterectomy the end of June. I have been suffering with chronic sore throats, dizziness, severe brain fog, and muscle and joint pain along with a short bout of hyperthyroidism that was definitely not fun. I have stopped the work and am trying to regain some ground, because I certainly lost a lot in the last year. The dizziness and off-balance feelings are there to some extent everyday, but have struggled with sinus issues and such for years. I do have some hearing loss on the left side and they thought I had Meniere's when I first got sick. How well are you functioning with working? I had to quit in 1996, and then I started back in the September 2001 mentioned above, but as you can see, it didn't work out for me.

Ginny
[QUOTE=GBonnough]Ukiahvalleymom

Glad to hear your doing better for the most part. I have had periods over the last few years where I have gotten somewhat better as well, but in September 2001, I made the mistake of trying to go back to work at home doing transcription and it was just to much and has really set me back a lot, then I had to have a hysterectomy the end of June. I have been suffering with chronic sore throats, dizziness, severe brain fog, and muscle and joint pain along with a short bout of hyperthyroidism that was definitely not fun. I have stopped the work and am trying to regain some ground, because I certainly lost a lot in the last year. The dizziness and off-balance feelings are there to some extent everyday, but have struggled with sinus issues and such for years. I do have some hearing loss on the left side and they thought I had Meniere's when I first got sick. How well are you functioning with working? I had to quit in 1996, and then I started back in the September 2001 mentioned above, but as you can see, it didn't work out for me.

Ginny[/QUOTE]

Ginny-
How did your body react to surgery? I am needing to have sinus surgery (again) but am afraid of how I will react/heal since I have pretty bad CFS. I was wondering if anesthesia affects someone with CFS differently than a healthy person, and if the healing would be longer. Granted, sinus surgery is much less 'severe' than a hysterectomy. I hope you are well now. I will check back in after my Feb. 7th appt at the Fibro and Fatigue center and let everyone know how it went. I don't know where you live..but you might want to check and see if there is a center in your area. Luckily, I only have to travel 3 hours.
Natalie:

I did fine with the surgery itself. Everyone couldn't believe how well I did with the surgery, but I didn't let myself rest as much as I should have and my hormones and everything got pretty screwed up, but like you said that is not the same as a hysterectomy. I had bad headaches for a couple of weeks and felt nauseous, but I don't know if that was from the anesthesia or the change in hormones along with trying to start Premarin, which by the way I have stopped due to it making me super, super, duper edgy along with causing hyperthyroidism which is just now coming back into range. That was not pleasant. My body did not like the shift in hormones at all. I have not felt well since, doing better, but definitely took about 10 steps backwards since the surgery and CFS and fibro got much worse. I'm hoping to pull out of it eventually.

As far as going to the FFCs, I myself cannot go and there are two within a couple of hours of me, either in Troy, Michigan or Middleburg Heights, Ohio. I wish I could go, but money is a big issue for me. I hope you are able to go and have success, but you definitely have to have the finances to afford it either by credit, borrowing or just having enough money to pay for it. Your first visit usually costs at least 700 to 1000 bucks, and your labs if you have insurance are billed and are about another 2000 bucks. Maybe I can go eventually, but it won't be now.

Ginny
Hi again
The first visit is actually $325.00. All the lab work is billed to insurance (thank god) and my insurance will cover meds too. So, the big expense is just the office visits-all visits after the first consultation are $225. So, I guess they aren't the kind of center than wants you to come in every month, it isn't an outrageous amount. But if you had to pay for the lab work out of pocket..then forget about it. God knows how much that would cost! Unfortunately, my mom retires in June so after that, I will not be covered by her insurance anymore, and that has me terribly concerned. I am going to apply for personal health insurance, but who knows if I will be approved with all my medical problems? I wish I had found this center a year ago so I could have already been in treatment..now I have only 5 months of insurance coverage.

Oh, BTW, the people I talked to at the center said they will be taking 24 vials of blood the first visit! (yikes! I was assured they were small vials)

....are you a fellow Ohioan??... :)
I consider myself lucky there is even a center in Ohio at all.

Take care
Yes Natalie:

I am in Toledo. Where are you? I wish I had the money to go to the center. I too was going to go to the Cleveland Center because I heard Dr. J was great. My insurance will not cover all the meds I don't think, but I definitely will look into it. Don't you go on February 7th? Let me know how well the visit goes when you go on and I will be curious to see what they come up with that you have at your second visit.

Ginny
I forgot to ask you Natalie if you ever post on the Immun******** message boards?

Ginny
Ginny-
I live in Columbus. The people at the Cleveland center said they might be opening a center in Columbus one of these days, which would be nice. I didn't think my insurance would cover any of the cost, but I talked to a lady who works at the "headquarters" of the fibro and fatigue center and she said they send all the paperwork to insurance and they almost always cover the costs. Even if you can't go right now, I would really recommend calling the center in Texas (I believe that is the headquarters) as there is a very nice woman who works there that spent 25 minutes talking to me about CFS and all the people who we practically debilitated before they went the center who are now improved, and told me all the specialists that people with CFS have tried before with no success. If not anything else, she is a sympathetic ear, and they might be able to help you with a payment plan (you never know).

Take care :cool:
Thanks Natalie:

That's definitely something I will f/u on. Nothing tried, nothing gained. Like I said, let me know how your appt goes and what they find.

Ginny
Hi there! I normally view the fibromyalgia board, but thought I'd check in this room. I was curious what sort of protocol the Cleveland center does for its patients. Is it the same with each person, or do they custom make the protocol to each patient? I live in Los Angeles and see a doctor who uses guafenesin and diet. I have had very good success with this medication. He put me on a low-carb diet and commanded me to excercise. Oh Lord, that was a hard one! But now its second nature and I see the benefits. The CFS has decreased to barely noticeable, and I no longer ache and hurt. What a relief. If you are interested in this protocol, you could do a search on guafenesin and the information will pop up. The doctor resides in California, as well.

Blessings to you. This condition stinks!
Kirstee
[QUOTE=GBonnough]Ukiahvalleymom

Glad to hear your doing better for the most part. I have had periods over the last few years where I have gotten somewhat better as well, but in September 2001, I made the mistake of trying to go back to work at home doing transcription and it was just to much and has really set me back a lot, then I had to have a hysterectomy the end of June. I have been suffering with chronic sore throats, dizziness, severe brain fog, and muscle and joint pain along with a short bout of hyperthyroidism that was definitely not fun. I have stopped the work and am trying to regain some ground, because I certainly lost a lot in the last year. The dizziness and off-balance feelings are there to some extent everyday, but have struggled with sinus issues and such for years. I do have some hearing loss on the left side and they thought I had Meniere's when I first got sick. How well are you functioning with working? I had to quit in 1996, and then I started back in the September 2001 mentioned above, but as you can see, it didn't work out for me.

Ginny[/QUOTE]
Ginny,
Regarding work...I had been on medical leave since August 31st this time. Due to neurotoxin exposure I cannot go back into my previous office. However, I'm opening up a business in March, I feel good enough to work as long as I steer clear of chemicals and mold and keep my life balanced!

My PT wants me to see an Allergist, and be tested so as to find out everything that I am sensitive to, since the onset of this illness. That way, I may be able to avoid setbacks. I'm hopefull, that will be true!

Anyway, I'll let you all know how I do, I'm pretty busy at the moment with starting up the business and being involved in a ministry for recovery. This means that I'm getting more involved, the illness is not ruling over me anymore.

I wish you all the best, uvm :bouncing:
UVM,

If you don't mind sharing -- I'm currious about the neurotoxin exposure you referred to. Was it a specific chemical that you were accidentally exposed to or some unknown contaminant in the building? I think my office suffers from "Sick Building Syndrome" and I'm curious whether you were exposed to something on the job or whether it was something coming out of the vents that you are sensitive to. If the latter, how did you make a determination?

thanks!
[QUOTE=GBonnough]Ukiahvalleymom

Glad to hear your doing better for the most part. I have had periods over the last few years where I have gotten somewhat better as well, but in September 2001, I made the mistake of trying to go back to work at home doing transcription and it was just to much and has really set me back a lot, then I had to have a hysterectomy the end of June. I have been suffering with chronic sore throats, dizziness, severe brain fog, and muscle and joint pain along with a short bout of hyperthyroidism that was definitely not fun. I have stopped the work and am trying to regain some ground, because I certainly lost a lot in the last year. The dizziness and off-balance feelings are there to some extent everyday, but have struggled with sinus issues and such for years. I do have some hearing loss on the left side and they thought I had Meniere's when I first got sick. How well are you functioning with working? I had to quit in 1996, and then I started back in the September 2001 mentioned above, but as you can see, it didn't work out for me.

Ginny[/QUOTE]
Ginny,
Hi, have you taken any thyroid meds, or been tested for underlying cellular level blood infections like (Candida Albicans, Mycoplasma Pneumonia, CMV, HHV6, EBV, or others). These, I tested positive for, while being treated for them, I feel so much better. My doctor swears there are other underlying causes to the symptoms, once treated, we get our life back.

Boy, I sure hope that I will be able to work. I feel like I can today! I've been very busy with setting up the franchise. But, fear does hang inthe back of my mind. Recently, my twin sister was dx'd with Chronic Fatigue, and one of my daughter's happenes to be really struggling with fatigue, and other issues...reminds me of the beginning of my own journey. I hope not, she's 21, I hate to see her like this.

My you find treatment that gives you back your life, uvm
[QUOTE=Icky_Metal]UVM,

If you don't mind sharing -- I'm currious about the neurotoxin exposure you referred to. Was it a specific chemical that you were accidentally exposed to or some unknown contaminant in the building? I think my office suffers from "Sick Building Syndrome" and I'm curious whether you were exposed to something on the job or whether it was something coming out of the vents that you are sensitive to. If the latter, how did you make a determination?

thanks![/QUOTE]
Hi, Icky_Metal,

I believe that it was something from the vents possibly mold spores. However, the building has a ventilation problem due to remodeling the layout changed.

I'm going to get back online tomorrow and finish this letter, I've been up since 6:45am and feel like I'm fading fast. I'll be able to describe my symptoms and the journey Iwent through which determined tha it was nuerotoxin exposure that I'm dealing with.

uvm
UkiahValleyMom - looking forward to your post. Thanks, Icky M.
[QUOTE=Icky_Metal]UkiahValleyMom - looking forward to your post. Thanks, Icky M.[/QUOTE]
Icky_Metal,

Busy, busy busy! So sorry, I thought I'd get back to you B-4, now!
Intially, back in Dec '04 due to the symptoms I had, the topic of neurotoxins exposure came up during my 2nd Appt with Dr Kent Holtorf of the FMS & Fatigue Center. He gave me the info to take an online questionaire and visual test for Chronic Neurotoxins.

First, I procrastinated, on taking the test, I was very sick, back then. It took everything and then some to make it through each second of the day. 2nd, when I finally took the test, bc of my cognitive thinking problems and severe brain fog I, personally messed up on the question regarding vision and corrective lenses. I should have answered 'Yes' instead I answered 'No,' a big OOPS! :o So the first half of the test was positive and the 2nd was negative on the visual.

I was working back then, each time that I went down to the Center and spent days away from the office, my symptoms subsided and I felt better. Then, I would start back to work, within hours symptoms appeared and with each passing day and week I became sicker and sicker. The last two episodes with it, I ended up in an adrenal crisis, in the hospital. It, took that, to decide to go on medical leave and not go back into the building.

Dr Kent Holtorf asked me everytime I saw him or called him, to retake the test, bc I should be doing better not worse. It took me months to take it, I finally did, last August or Septmember of '05 and the test was [B]positive[/B].

The symptoms of neurotoxin exposure are very much the same as CFSIDS or FMS. My symptoms were severe brain fog, cognitive thinking problems, hypothyroidism, adrenal dysfunction, low blood pressure as low as 70-80/50, low temperature as low as 92.4, usually, 96.4-97.1, no immune system, tremors, joint and all over tissue pain, irritable bowel syndrome, irritable bladder syndrome, stabbing pains in different parts of the body, abdominal cramps, vision problems, blurred vision, night vision problems, light sensitivity, hypersensitvity to noises and sounds, rashes, histamine issues, yeast problems, loss of weight, 20+ pounds in a month, more than once and nausea.

My husband, was ready to hospitalize me, he thought I was dying. :eek:

There have been at least 6 women at the office, all dx'd with FMS or CFS, by different doctors, all experiencing symptoms like me.

I believe the exposure is from either mold spores or problems with the HAVC, after major remodeling was done. My symptoms started neurologically, and then cascaded down through the different bodys' systems, causing damage to some of my organ systems.

Today, I'm feeling 80%-90% better, I've had days were there have been no symptoms at all, it makes me cry out of thankfulness to modern medicine the advances that have taken place over the last 10-15 years with these diseases is amazing! There is no better time to have these issues then today and maybe tomorrow as more research is done.

I have color again and I look alive! I'm able to enjoy more things and be active most every day. :bouncing: uvm





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