For me!!! :bouncing: :bouncing: I received my lab results last night from my Fibro & Fatigue doctor that has revealed the underlying medical issues that are the culprits for keeping me in a constant flare-up. The best news is that with the treatments I should be feeling much better in 4-6 weeks!

Here are the results:
1.) Tested positive for Human Herpes HHV6.
2.) Tested positive for CMV, Large cell virus; its related to Epstein-bar.
3.) Tested Positive for Epstein-bar old infection, acute infection.
4.) Tested positive for Candida overgrowth and currently active, treated with a anti-fungal antibiotic.
5.) Tested positive for active Myco-Plasma Pneumonia, treated with a antibiotic.
6.) Test revealed previous Pneumonia infections can re-activate.
7.) Tested very low level of Seritonin treated with 5HTP.
8.) Tested very low level of Norenephrine treated with L-Tyrosine.
9.) Tested Amino Globulin: IGG- well below range, IGA- normal, IG?-active high: reveals that my body is trying to fight something off. IGG totals reveal immune system is off, treatment available, checking with Insurance Co for coverage.
10. Tested Prolactin, normal.
11.) Throm tested and revealed a battle in the circulation, Hypercoagulation, a blood clotting problem, treatment available, hopefully insurance will cover the costs, should be a year of treatment, with measurable reults in 4-6 weeks.
Also trying an Immune Booster, to see if we can kick start it back into action.

I now understand why I have had a different type of pain, my veins feel like exploding, that is from the blood clotting issue. Having all these infections alive at one time are constantly causing the fatigue, pain, headaches, eye problems, sorethroats, runny nose, flu-like and fever-like symptoms...

These are answers to a long journey, and I'll keep you posted, hopefully with positive news as I continue through my treatments.

I hope that through what I am experiencing there will be treatment available around the world for all who suffer with FMS and CFS.
Your all in my prayers, uvmom :wave:

Where did you go to get these tests? Do they think they can heal the fibromyalgia?

Let us know where to get those tests because the docs here dont run all those tests. They might do one for ebv, cmv, and candida. The rest of those I have never had done, I have'nt even been checked for candida, and I probably should, since all of this seemed to start at the end of my pregnancy and is still going on.

I'm glad you're getting some answers. I've had the coagulation thing done (I think), but none of the other tests. Let us know how you're doing.

Hi, luv2, JJ, and Hfibro,
I have been going the facility since November '04, and have found it to be a place of warmth and genuine caring. The staff is great there, too. I have never been to a more thorough doctor and with an abundance of knowledge that he is passing on.

The story of how the clinics were started is worth reading about. They are going across the country with them, and the doctors are all specialized in CSF-FMS along with other major illnesses.

It takes time, there is a process, it is not a cure, but, it is a plan in the end to have a better quality of life, and I have received some good results already, read the therapy protocol on the web site.

Prior to my doctor appt. I received a 24 page history worksheet to complete, with symtoms, other major illnesses and surgeries, when I saw the amount of pages to write out all the medications taken for FMS, from the start to currently taking. The first thing I said to myself was, wow, I sure am lucky, I didn't even fill a half a page, treatment started the end of May for me. I have tried 4 Anti-depressants; Cymbalta and trazodone I still take.

I thought of all those who have been sick for years, and have gone through trying meds, having them not work, or maybe they did work short term on some if the symptoms and after some time the meds stopped working...
how many pages would be filled?

They treat the whole body, with supplements, natural hormones, along with western meds. I was very sick at my first appt, so they had me come in and have IV treatments prior to the appt and the next day I had more treatment, and was given some supplements and Ultram to head home with. By the way, I felt great that weekend, it lasted until I got back to work, my job may be another culprit, we'll see.

I knew that I would have blood drawn at the first appt, however I was amazed to have 34 viles drawn?!?! :eek: I went back in 30 days for the results, and started the 2nd phase of the protocol.

Start working on the issues that showed up, get them under control, so that I would be ready to have the infectious diseases panel.

Based on my symptoms at the 3rd appt my doctor knew what tests to take, over 23 viles where taken in February, which resulted in the above message.

I am ecstatic... :bouncing: I can be treated, most of what is prescribed this time will be covered under my insurance, both labs were also covered.

{{{removed}}}

His field is in hormones and longevity, he, himself had CFS and studied until he found what to do to get better.

If I can say his name, please tell me, for I don't want to mess up on this board.

I promise to keep you all updated on how I'm doing, I hope that you can find the site, if you think of me on Monday evening, around 5:45PST. Say a prayer, its my first time to learn how to inject medicine with a needle in to me, a bit scary, I think.

I have got to go this has taken me 11/2 hours to write and I am hurting everywhere, write to me what you think.

Goodnight, uvmom


[ please do not post search instructions to find websites - if a website is allowed, you can get permission from moderator1 to post the link - search instructions are not necessary for an allowed website - do not post any kind of information to find a website not allowed to be posted ]

well done! im so pleased for you. you must be so x=chuffed!!! your doctor sounds great! cant a gp test for all them? im in uk. love april xx

What were all of your symptoms and how long have they been going on.

What are they going to do about all your symptoms

uvmom

Hi, I read your posts and like everyone else am very interested in your diagnosis!!! Your thread name is ironic to me because my favourite quote lately is "There is NO light at the end of the tunnel"!!! I am so glad that you can see one.
I too have been diagnosed with fibromyalgia/chronic myofascial pain/chronic fatigue syndrome. I have neck, head and shoulder pain and have had it for at least 5 years now. I even had surgery on my cervical spine for bone spurs, bulging discs. degenerating discs. and arthritis. I have titanium pins and plates with donor bones. I didn't get any relief from the surgery!!! But before I had surgery I had every problem checked out, went through acupuncture, chiropractors, sacral cranial therapy, st. johns neuromuscular therapy, trigger point therapy and injections, steroid injections, medial branch blocks. You name, I have had it. I decided to go to a "Homeopathic" doctor who does some weird testing by putting his hands on parts of your body and he thinks he can tell what is wrong with you!! Well this guy is real well known and you can barely get in to see him with out having to wait for a month. He tested me and told me that he thought I had a yeast infection, chronic fatigue syndrome and also sent me for tests for Epstein Barr Virus. My tests came back positive for Epstein Barr Virus also CMV so I had a double liver virus. I have sore throats and sore glands 3 or 4 times a year that lasts sometimes 2 months at a time. Antibiotics don't help at all because it is a viral infection. For about 6 months he put me on some kind of natural liver supplements and it didn't make me feel any better. He did tell me that I had some kind of yeast in my system which could be that candita infection you are talking about. 2 years later with all the supplements that he put me on, I am still not feeling better and he then decided he couldn't help me. Listening to your story makes me wonder if I have the same things as you. This is all very interesting.
I hope you get some relief and I will be very interested to hear how you are doing like lots of us on here, you give us hope. Take care of yourself and keep us posted.
Thanks
Lyn in Michigan :angel:

well done little sister!
love,
bluelakelady

Thank you all for your replys, it is so appreciated, thank you Moderator2 for the correction of my message.

My journey started years ago, tho, I didn't know it until after the dx in May of 2004.

Initially, I was in excellent shape during the year of 2004, considering that I had a Spinal Fusion of 14 vertebraes in November of 1994, that was a long road to recovery. But, I made it! I worked out 3 times a week, played golf, water skiied, was energetic.

Involved in my son's school writing the weekly Newsletters, involved in our church's Christian Recovery Program for our community 3-4 times a week out, between meetings, worship practice, jail ministry, and Friday night Program. I worked fulltime and also created the weekly lessons we used for the clas two if us taught to the women held in the county jail. I also typed up the music inserts that were used on Friday d all the classes our recovery team held at the county jail and for our Friday Recovery Program. As busy as I was, loving everything I did, I felt on top of the world.

(An example: to NOT FOLLOW, this illness taught me to slow down and to say "No." )

Then in October of 2003 I lost my dad suddenly to a stroke. The week before my husband's mother had passed away after a very long illness, so we flew up to Washington State for her service flew back down for my dad's. I had never felt grief before, what a deep dark place it is. My emotions caught the best of me during that time and I got very sick.

At the same time my job somehow became very stressful, I always have been a muti-tasked type of person, can handle a lot of pressure without it effecting me, I was always running, 'a mile a minute' smiling as I did. So when I started having feeling of overload in my body and mind, I was a bit unnerved.

We where in a big change at work, opening our 2nd Branch, my department changed from a staff of 4 with 3 knowledgeable of New Accounts, Loans, etc..(we have been setting records in the loan dept over the last few years, very busy!) to 2 and only one knowledgeable with 2 new Branch Managers, 2 new Asst Managers, and 2 new FSR needing to learn all about what I do in a very short time.

The illness kept me down pretty good through November and in December I went to the hospital, and was told I had Reactive Airway Disease, with meds I finally got back on my feet in January.

Then in February 2004, I started having waves of dizziness and nausious, periodically. I had a physical with my pcp, the only thing I told her was I thought my hormones were acting up because of my symptoms, just like a couple of years ago. She decide to run some blood work. When I got home that night, my husband asked, "Did I tell my doctor about the lump in my breast?" What lump? The one right....

I had no idea that I had a lump. so I waited and as I did symptoms started getting worse. Within 4 weeks,this all happened, I was so tired in the mornings, in the afternoons I ached like I had the flu or something worse. I would limp, to stand up from sitting the pain was excruciating. I felt like I could just fall flat on my face at work to sleep, the brain fog was in full gear.

When I felt burning heat radiated out of my right breast in the front and out the back, like it was burning up from the inside out. and I thought my lymphnodes were tender from trying to fight something off in me. I finally went and saw my PCP.

That was early April, I had the lump a size of a walnut removed April 7, it was benign, but the surgeon, told me there is something wrong and you need to keep on the doorstep of your PCP until she figures out what it is. Because your symptoms aren't normal.

While at home recooping, my symptoms stayed at bay as long as I laid down and rested, when I would walk, vertigo and dizziness were with me. I felt good enough to head back to work after 10 days.

The symptoms common to FMS and CFS came back with a vengence, I can say I had about 98 percent of the symptoms listed. I could hardly drive my car most days. One time I slept outside my office for an hour before I drove home, another time I slept in the Safeway parking lot, and another time I slept at my sisters house 3 minutes from work, because I didn't think I could drive the 10 minutes home. I would drag myself into the house, drag myself to the couch and sleep.

My whole family were very concerned, I looked sick, my eyes told everyone how I felt inside even with make up on. It was so hard to smile, took too much energy, can any of you relate?

I was dx'd with FMS by my PCP in May of 2004, and ditto'ed by a PM doctor along with the dx of CMP in September o 2004. Then I went to a Nuerologist who confirmed it in October and then onto the specialist I started seeing in November.

As I said, in the start of this thread, the initial treatment by my PCP was to address my sleeping disorder, it took 3 different meds, to find the one for me, and it doesn't always work but there are no side effects for me, I take trazodone and will start 5HTP this next week.

And my cognitive thinking, after a few months of trials with different meds, Cymbalta became the one for me in September of 2004. This has improved my thought processes even when in a flare, I had a kick start, taking Effexor Time Release, prior for about 3 months. My PCP doctor slowly weaned me off these meds like Effexor as the dose of Cymbalta was increased. (I mention that, because when I hear how doctors drop their patients off one and on to another, it makes me so mad) It may cause withdrawl symptoms that can cause you to believe the new meds had worse side effects.

I experienced no side effects as my primary doctor changed the anti-depressants, and also, these are prescribed to you, to help what you have left in seritonin function better. The 5HTP helps ypu sleep deeper and will build up your Seritonin level.

My symptoms are being treated with rest, a disaplined and cut back schedule, diet for my symptoms of Hypothyroidism, Candida and IBS. Meds, Supplements, and Natural Hormones, along with PT Massage Therapy, as I improve I will get back into exercising.

By the way, I have had more good days since seeing the specialist, and days were I can make it through, I can still have flare-ups that set me back, but I see how I am now, I can work a 4 day split work week. I can drive most days, I can type long letters :o , might take me hours like this one! :yawn:

When I started treatment in November, I came home with 5 supplements, my 2nd appt I came home a lot of different things to take, some I no longer take, know I am taking some additional antibiotics, meds and 3 new supplements geared to help what showed up on the test, its becoming more individualized. As the treatments work and I get better, then I will be taken off what I don't need and be on a maintenace program.

While trying to find out what Mycoplasma Pneumonia was, this morning I found some valuable information, I hope to share it with the Moderators so they can see if it is okay. The information is so updated and it confirmed to
me the treatment protocol I am on for it, as well as what it is, what it does and so much more. Along with what to expect from treatment.

I best get on with my day, sorry it's a long post, just tried to answer all your questions with one post.

My heart goes out to all, and I promise to keep you posted,
uvmom

Hello uvm,

First let me say that I am sorry your test results revealed so MANY different conditions, but now at least you know.

May I ask your exeperience in some of your conditions? I would like to know what kind of symptoms you had for the Epstien Barr, the Human Herpes HHV6, the CMV, Large cell virus; its related to Epstein-bar, and the Candida overgrowth ? As I posted somewhere else, I have been having really different symptoms that aren't my normal FM symptoms, and I have researched all of them and they have popped up under all these symptoms I am asking you about. I am particularily interested in the Herpes and Epstein Barr. For the last few months I have been getting "fever blisters" "cold sores" right at the corner of my mouth, and just yesterday I was in the shower, and when I went (now this is pretty personal ) to wash between my legs, I noticed it was painful, so of course, being the curious sort, I got out my big mirror and I saw bumps on the labia minora and that they were swollen and also noticed dark "dots" which looked like blood blisters. But it was the bumps on the very edge of my labia that worried me, and the pain of course. I haven't had excessive yeast, but some of the familiar symptoms of yeast infections, itching burning etc. So that's where I'm wondering about the Candida over growth. And I have been so extremely exhausted, just beyond imagination. I can only stay awake for a few hours at a time. My muscles are sore, not just my tender points. Things are heavier than normal to me. I get chills to where my teeth will chatter, I am dizzy, uncoordinated so bad that I am always ramming into things, and let's not go into the cognitive part! I am having an awful time actually "seeing" what is written. I'll read it, but it's all wrong, not what was printed at all. I have a heard time getting the words out. It's like I can "see" the word I want to say, but it won't come out of my mouth. The other night I was looking at the TV and I swore it said "Naughty News" instead of "Nightly News" It was clear as day that it read Naughty! Then I when I looked at it again, I saw the right words. I also get frequent sore throats, most recently one with a big old white patch on the back of my throat, my gland was swollen, and I often get swollen "node" right under my chin, and soreness in my armpit. And I can relate to your "tiredness", I sometimes have to stop and pull over in my car, to "wake up" for fear I won't make it home. I even here lately fall asleep in the waiting room while waiting to see my doc.

So if I may, would you tell me what your symptoms for all of the conditions I mentioned above? Oh and how did they test your serotonin level? My rheumy told me it couldn't be tested by blood samples, but by a spinal tap where they look at what is called Substance P. How did they test your serotonin level?

I am interested in all this cuz I am seeing a brand new rheumy tomorrow and I am going to ask to be tested for Epstein Barr, Herpes, CFS, CMP, Lymes and have all the blood work for FM ran again. I only hope he agrees to run all these tests!

Any info from you would be so greatly appreciated and very helpful to me. Thank you.

And can you give me an update as to how you are treating these conditions? I see you are taking some of the amino acids to help boost the amino acids you are lacking, good! The 5HTP and L-Tyrosine are good.

Take care.

tk

welcome back tk.
love,
bluelakelady

Hey BLL!

Thank you, and big hugs to you.

smooches,
tk

hi ukiah,
how was group?
how do you feel after hosting?
peace, giggles and hugs,
bluelakelady