Diagnosed with Fibromyalgia/Chronic Fatigue. Tested positive for EBV, HHV-6, and C Pneumoniae.

Here is my story.

I grew up being a competitive athlete.  After I was no longer competing I continued to exercise every day.  5-6 miles running 6 days a week and lifting weights 3-4 days a week.

8 years ago I was in the best shape of my life when i became sick.  I had a flu-like illness for 1 week and was never the same.  I continued to force myself to work-out.  I would take naps in the middle of the day, but then would force myself to go run 5 miles.  I tried to continue to lift weights, also. I think this really made me worse. 

 I got to the point where I was convinced I had cancer and was going to die.

 I have seen many Doctors(Probably 20 in all).  Many wanted me to take psychological tests, because my blood work always came back normal. 

 I recently found Fibromyalgiai and Fatigue Centers in Denver, CO.  For the first time in my life I have hope.

 The Doctor tested me for Epstein Barr Virus, HHV-6, and C Pneumoniae.  I tested positive for all 3.

 The Dr started me on the blood thinner Heparin.  After 1 month of this I have now started on Valtrex.  She wants to start me on an antibiotic after I have been on the Valtrex for awhile.

 

The Heparin is to help reduce the protective "fibrin" around the bacteria and viruses so they are easier to kill.

 

I am wondering if I should even be on an anti-viral and should get on the antibioticsi as soon as possible?

 

I get brain fog and discouraged, so any advice would be much appreciated.

 

 

 

 

 

Comments

Hi Raven, Thank you for the

Hi Raven,

 

Thank you for the recomendation of Lauricidin.  I have been using it faithfully everyday.

 

I ran out of Doxycycline and forgot to go to the Pharmacy today, so I missed a does tonight.

 

Is missing a does a big deal? 

CFSi, Fibromyalgiai, EBVi, HHV-6, C Pneumoniae.

Hi Raven, It is notable that

Hi Raven,

It is notable that lauric acid has a pKa of 5.3 and is usually taken in large doses. So if one assumes this is readily taken up by cells, it may help promote lowering intracellulari pH.

- Paul

Stew, it is so great to

Stew, it is so great to finally have the answer to why you have been so ill.

Regarding the viruses, I have had very good results from using Lauricidin---a type of monolaurin. After 4 months of using 3 scoops of it, my HHV6 levels were cut in half. Warts disappeared. I had to take more this summer while I was fighting a viral infection in my thyroid gland. I took it with oregano oil as it is supposed to boost the effect. At this higher level (4-6 scoops) toenail fungus began to disappear. So I can highly recommend it.

I am also taking a supplement called Epicor from ProHealth. It raises Natural Killer cell activity. I have also found this helpful. My doctor has found a few defects in my NK cell activity as well as low globulin count. This is probably why some of use fall prey to these infectionsi.

How was your vitamin Di level? Did they test it?

 

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Stew,I've been through

Stew,

I've been through dozens of doctors as well.

A psychiatrist actually ended up diagnosing me with CFSi/Fibromyalgiai and brought my parents in to tell them I was not a nutty twenty-something!

I eventually found my city's doctor "of last resort" in the newspaper- a profile was done on the wonderful work he was doing with sick young people.

Until the doxyi, amoxycillin combination I couldn't even talk without crying.

Hang in there, Stew!

Stew,I am also on doxyi and

Stew,

I am also on doxyi and antivirals.

I was doing better with doxy, so probably this would also make you feeling a bit better in short time.

But everybody is different. The antivirals are not helping me so much at the moment, maybe they need more time.

What changed a lot are the Hydroxy B12 shots I have every day. They are so great.

I take Vitamin E 1,200 and fishoil three a day for bloodthinning.

You will get better with good treatment.

Kayla

 

Stew~  Your story is a lot

Stew~  Your story is a lot like mine.  I don't have much time to type as I'm headed to catch a plane for the ILADS meeting in NJ.

But, check out: www.hhv-6foundation.org for more info.  Focus lab is a good lab for testing for HHV-6 and EBVi.  There is info on EBV that I posted in the patient's section.  Also get tested for enteroviruses at ARUP lab: www.enterovirusfoundtion.org.

With any luck, there will be another website that condenses this info up and running by Christmas.  

I have very high antibody titers to Cpni, Coxsackie B, HHV-6, EBV, HSV1....and I'm probably leaving something out.  I've been on antivirals and antibioticsi and feeling the best I have in 7 years.  I'm not yet well, but making good progress.  

Best, Timaca

 

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Hey Jeanne, I found a copy

Hey Jeanne,

 

I found a copy of my blood work.

 The cpn  IGGi was 1:256II.

My EBVi EBNA AB IGG was 4.79.

HHV 6 IGG was 1:160.

 

Antother test she did "Thrombin Antithrombin Complex", which was >60.0

She said I tested the highest she had ever seen and consulted with another Dr on my levels.

 I beieve this test was to find out how thick my blood was from the fibrin response.

 

Another test was D-Dimer and it was 1.45.

 

Does any of this mean anything to you?

CFSi, Fibromyalgiai, EBVi, HHV-6, C Pneumoniae.

Hi Jeanne and Janice!Thanks

Hi Jeanne and Janice!

Thanks for your responses!

 

Jeanne,

 I don't know what my cpni titer levels are.  I will have to ask for copies of the tests and I will let you know.

 

Thanks!

CFSi, Fibromyalgiai, EBVi, HHV-6, C Pneumoniae.

Hello Stew30. Your diagnosis

Hello Stew30. Your diagnosis is similar to mine. My doctor has me on Lauricidin to kill viruses, retroviruses, and Cpni. Four (?) years ago he had me take Valtrex for a while after I had a shingles attack.

 Seven (?) years ago for months I gave myself heparin shots. My blood used to be so thick, it would clot up before they could draw enough blood out to fill the tube. One time a nurse couldn't get the blood out at all, and she was good at blood draws. Now my blood is plenty thin. I take enzymes to keep the fibrin down. At some point I hope you can graduate to that, and not have to take shots.

I've had the same experience of going from doctor to doctor before I got a diagnosis. Many immediately assumed my problems were psychosomatic, and within minutes of my first visit wrote healthy on my chart. I had high lead levels for 20 years, and they could have at least tested for that. I realized I got lead from handling a sheet of lead at work. I've been doing chelation therapy for over a year now. My doctor found that many fibromyalgiai and CFSi patients have high lead levels.

I'm glad you found us. I hope you get much helpful information. You'll get emotional support here that I hope will make up for all the times you got told you needed psychological testing.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Stew30, you may find wish to

Stew30, you may find wish to read this.  Some of us here believe we should treat the CPNi first.. and some have treated the viral aspect first.   The article by Dr. Wheldon discusses how he views the viruses as the "henchmen".

 Great that you finally confirmed you were not crazy Wink and have a doctor who is willing to treat you!  Most of us here know that feeling.   I, too, have EBVi, HHV-6 and CPN (and the same diagnoses, but they were not incapacitating until I went into treatment).  Many here use non-pharmaceutical supplementsi (such as Lauridicin) against viruses .   Do you know what your titer levels were for the CPN?  Did you get copies of your tests? 

 Other topics here on the site worth perusing are discussions re biofilms and yeast... lot's of good information/discussion about these topics as well.  And they can have a major impact on treatment. 

 

 

JeanneRoz 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Hi JeanneRoz, I'm sorry, but

Hi JeanneRoz,

 

I'm sorry, but I forgot about this blog and I am just now reading your question.

 

When I started treatment my CPNi Titers were:

IGMi  <1:10

IGM  1:256 II  <Which means a past infection.

 

I have been on the CAPi for a year now and I don't feel any better. 

My Doctor at the Fibromyalgiai and Fatigue Center quit the center.

And my Primary Doctor will prescribe the antibioticsi, but they don't really seem interested in learning about the protocol.  They just want to check my blood work to make sure I am not hurting myself with the antibiotics. . 

So basically I am treating myself.  On a wing and a prayer it seems like.

I am very discouraged.

 

CFSi, Fibromyalgiai, EBVi, HHV-6, C Pneumoniae.

Stew If I had read this

Stew

 If I had read this before your other, my answer would have been similar, but my apologies for missing your history. 

Please lengthen your sights and try hard to know that this darn thing takes much longer than we wish.  But the alternative is much worse.  You don't want to go there.   We really are the fortunate ones - there are so, so many who don't have this opportunity.  Visit more often - we will work at cheering you up.  One day, this will be taught in medical school.  Don't be hurt that your doctor isn't interested - he is prescribing for you!   

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

Stew, I think the way of

Stew, I think the way of looking at this is not "I don't feel any better", but, "I'm not getting any worse".

We just don't know how bad we might have gotten if we didn't use this protocol.  We might all be SO much worse off than we are now!  We just don't know.

If you are tolerating the abxi  okay, and are taking all three fairly well, why not ratchet up your pulses?  Go longer periods taking all three meds (after all, it's the nidazole that kills the bacteria dead).  Also, you have to look into whether your other two bugs need to be addressed now.  You might have beaten the CPni bacteria down, but maybe now you need to attend to the others. 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Rica! Thanks for the

Hi Rica!

 

Thanks for the response.  After reading throught the site again I am feeling better about my situation. 

After 1 year some people still couldn't even drive their cars, so I am doing better than that.

I was just being negative and feeling sorry for myself when I need to realize things could be alot worse.

 

I do have an awesome Primary Doctor. 

I respect him very much and appreciate that he is so open minded to prescribe the antibioticsi to finally fight and kill the CPNi.

CFSi, Fibromyalgiai, EBVi, HHV-6, C Pneumoniae.