27 Apr 2018
Author
ladyaggie
Title

CFIDs patient also with CPN- what to do ????????????

Body

I have had CFIDs since the 1980s and am now on disability because of it.  I recently moved across the state, and thus have a new doctor.  He ran all new tests, and referred me to this website when my EBV Ab VCA, IgG and EBV Nuclear Antigen Ab, IgG tests came back extremely high.I have gone through so many treatments over the last 25 years, all without impacting my exhaustion at all.  I am hesitant to commit to a new treatment plan that I might have to be on for years.Can anyone tell me if you were previously diagnosed with CFIDs and have show real results with this treatment?  How can I be

Comments

Hi ladyaggie~   For viral info you can go to www.hhv-6foundation.org.  There is lots of info on HHV-6 virus (which you should be tested for since your EBV antibody titer is high)...and some info on EBV. 

I'm positive for EBV, HHV-6, Cpn and likely enterovirus.   I had significant improvement on valcyte, an antiviral drug that targets HHV-6.  I'm now on acyclovir for the viruses, and doxy for Cpn. (I had IgG and IgA antibody titers as high as the lab measures).  I am better than I was, and today was the best day I've had all year (sure hope that continues!) 

You might have your doctor look over the HHV-6 website.  There are also some great videos to watch that may be of interest to him/her.  Enterovirus is another cause of CFS, and there is a great video by Dr. Chia at this link:  

http://scivee.tv/node/7965/video

 Scroll down until you see the video on enterovirus by Dr. Chia.

Best,   Timaca

on valtrex 500 mg tidhttp://whispersfromthefather.me/   

Thank you for the references!  I saw both, and it is a lot of information to absorb.  I think I need a "Celluar Biology for Dummies" book.  Actually, it is nice to see so much research going on, even if there is not a lot of consensus on the results.

I will see my doctor again in a couple of weeks, and feel MUCH better armed with questions for him.

Good luck!

Sherry

Testing negative for cpn does not mean you don't have cpn.  It just means the test did not find it. Cpn tests are notoriously unreliable.

I had self-diagnosed myself as a chronic fatigue sufferer many years before the cpn hit my brain and some doctor decided I now had MS.  I truly believe this treatment hits both, because it kills the CAUSE of so many different 'autoimmune' diseases, which is cpn.

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

I suggest your read the getting started module (blue tab at the top of the page) which will give you info on both Cpn and the symptoms it can cause.   If you think this list matches your condition then you can also read about the treatment there.

It is good news that you have a doctor who is willing to search for a solution to your condition.   Many here don't.

I've sent you a private message....

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Hi, Ladyaggie..

Welcome to our world!  I find it interesting that your doctor referred you to this site, even though your tests were "negative" for CPN.  (even though, as Mack says,  that doesn't mean you don't have it :)   He will, hopefully, be willing to prescribe antibiotics for you.

IMHO the reason your treatments over the past 25 years did nothing was because they weren't addressing the right problems.  I believe that CFIDS is not an illness in and of itself, but rather, is caused by issues such as stealth bacteria and viruses. 

If I were you, I would be excited you finally found a doctor (yes after all these years) willing to  refer you to information that may help you!  Most doctors are not familiar with treating CPN.  What have you got to lose by committing to another regime?  If you don't you will run the chance of developing other long-term health issues such as those listed on the main page of this site.   It's not easy, but you have everything to gain! 

There is much information on this site.... as mentioned above read the "Getting Started" tab and the "CPN Handbook".

 

 

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Sherry, you might want to look at AstroDiana's, Zdenika's, and JimK's stories ("Patient Stories" tab, the red one at the top of the page.)

I am perhaps 75% better now, and I think you'll find other CFIDS peeps here who have also improved or been completely cured. IIRC, Eric Johnson had to crawl to the bathroom at one point, but the last I heard he's in Med School and back doing long-distance running.

RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent

Chlamydia pneumoniae and maybe other bacteria which we did not discover yet are responsible for the CFIDS. When I retrospect my condition I can easly recognize the breakthrough moment in my life. It was the time ch pn hit my brain and nerves. I started feeling lightheaded since that time and cascade of all the other symptoms occured making me a totaly sick person from every possible angle I can imagine.

I am on a CAP since 7 months. I deal with CFIDS since 4 years. I am not sure whether it will help you to recover because I am getting weaker and weaker on CAP. I do not feel it will lead to anything I would call recovery, cause there is no energy back at all from CAP. On the other hand I would be propably dead by now if i did not start CAP, or at least I would be paralized, because my nerves are really increadebly infected. So in terms of helping you to just live and to avoid new related disabilities and other health issues I am sure it is the best choice you can actually do. In terms of waiting for a "magic trick" to happen due to CAP treatment, it is better to forget it, just not to be disapointed.

I am pretty happy that I live and I can watch TV , go for a drink, work a little, and mainly that I am not dead, but senses, my social life, relationships... is over. I am numb and exhausted... but I live which from the perspective of being dead/not dead or paralised/not paralized is really attractive to me.

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

LadyAggie, Please understand that Michael is only seven months into a treatment that can last several years. The medication does begin to attack the disease from the moment you begin taking it. However, depending on how heavy the bacterial load is, where it is concentrated in your body and what co-infections you may have, it takes a while to overtake, then slow, then stop, then overcome the bacteria.

Think of it as running after a car that's in gear and moving slowly down your driveway. You have to see the problem, run after it, catch up to it, jump in, apply the brake and bring the car to a halt. That's what antibiotics do, but they do NOT stop disease progression the instant you put the first one in your mouth. It takes time.

Michael, Considering we all had diseases (MS in my case, but CFS, RA, rosacea, IBS and others) that were considered 'incurable', stopping progression is HUGE, which is what you are describing for yourself. You are only at the point of 'catching up to the car' and you still have to wait for the abx to OVERTAKE and begin to beat down your bacterial load. It sounds like you are right on schedule in your recovery.

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