Cpnhelp.org

Timaca. Great that you are feeling better.With such high testing for Cpnⁱ it would be a good idea to add Azithromyacin with some Flagylⁱ or Tiniⁱ pulses. Cpn can suddenly turn vicious--I know. I had a fairly placid year after my first bout of illness and then--wham! It hit me again with much more force and caused more damage a year later. Only the combo of Azith and Doxyⁱ will keep it corralled but adding the killers (Tini or Flagyl)will begin to bring down your levels and give you some number 10 days again. You know what that feels like--feeling completely normal again. Those wonderful Blue Sky days!

There is research that addressing heavy metals with chelation can help with all infectionsⁱ--bacterials and viral. Might be something to look into also.

Hang in there,

Raven

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Feeling 95% well-going for 100. Still testing + for Cpnⁱ. CAPⁱ since 8-05 for Cpn/Mycoplasma P.for MSⁱ and/or CFSⁱ. Also EBVⁱ and HHV6. Amoxy,Doxyⁱ, Azith, Tiniⁱ pulses. NACⁱ, BHRT, MethyB12 injections

Thanks Timaca,

It does seem you are doing well. You have a g o od doctor.

Here's to even more improvement. You've earned it.

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diagnosed MSⁱ Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyⁱ 100 mg. 1BID. roxyⁱ.150 mg.? BIDⁱ,adding rifampin soon, pulsed tiniⁱ. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNⁱ),NACⁱ, nystatin, major wheldon supplemrnts daily,

Hi Raven~  Thanks for your input.  Those are all good suggestions, and will be addressed if I plateau or go backwards.  I think my doctor had a good point of not rocking the boat by changing anything since I made such good progress in the month of June.   I would have to agree with him.  We both decided it would be best to see where this current combination of meds takes me.  When I stop making progress (if that happens) then we look at the situation and make changes.   It would be a drag to make changes now and have my progress stop or go downhill.  

Thanks loulou for your well wishes.   I wish all better health.

 Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Hi Louise~

Good question.  I *think* that enterovirus can be eliminated.  The enterovirus website seems to indicate that: 

http://www.enterovirusfoundation.org/treatment1.shtml     If I manage to get all the way well, then the oxymatrine would be tapered off and I would see how I do.  

I may be on acyclovir (the active ingredient in valtrex) indefinitely.   Obviously, if we could figure out what went wrong with the immuneⁱ system, and fix that...then all these pathogens would have a better chance of being kept in the latent state or being eliminated.

Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

Timaca, have you been given any possible timeframe for the enterovirus treatment? 

Have you been screened for gluten intolerance or Celiac Disease?  There is thinking that it affects immuneⁱ system function.  I have just updated myself somewhat on the developments in diagnosing it and the new thinking regarding it's prevalence and forms of expression, silent to classic. 

20 years ago it was hardly aknowledged as a possible problem.  The Video Links that I posted have some very good professional speakers.  I am amazed at the amount of conference presentations that are available online these days on a huge variety of topics.   Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Hi Louise~

Possibly 2 years on the oxymatrine for enterovirus. 

I was screened early on in my illness for gluten intolerance/Celiac disease.  It is not a problem for me.   Interestingly enough I had the perfect GI tract prior to becoming ill.  Sometime into my illness I would get some significant GI pain (mainly gastric).  My stomach would feel like it was paralyzed...didn't even want to think about putting food into it...like it would not accept anything else.   I wonder now if that wasn't enterovirus taking hold. 

Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

 Timaca, you seem not to be worried about lyme, are you? What is the dose of doxyⁱ. you get?

   YILMAZ

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KEREM'S TAKECARER;

Suspıcıon of MSⁱ (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Hi Yilmaz~   I am not so worried about lyme at this time.  I've had lots of western blots done on me over the years from several different laboratories, with varying results.  I know that I have an infection that is either bacterial and/or chlamydial in nature due to the severe Jarisch-herxheimer like reactions that I get when I take antibioticsⁱ (one of which put me in the ER).....and the fact that antibiotics have improved my health significantly.  So, it is important to me to treat that aspect of my illness.   I can't call it lyme for sure due to the equivocal test results.  

I am on 100 mg doxyⁱ bidⁱ.  

Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

Timaca.. glad are feeling better.  Wow.... I find it amazing that you were able to take a week long raft trip down the Colorado! (your post in another area here on CPNⁱ)!

Aren't you and your doctors concerned the CPN and Lyme are continually increasing in the cryptic life form?  I am just curious what the thought process is there from the doctor's perspective.  I also read one of your posts on the HHV site that your husband also has CPN??..... did he ever treat for it?

It wonderful to start having more good days :)

JeanneRoz

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Supp's

Hi JeanneRoz~

I do feel fortunate that I was able to take a week long rafting trip down the Colorado.  While people of all ages and abilities go on those trips, it still is considerable work to carry your dry bag around, pack and unpack it, climb on and off a huge raft, get splashed with 45 degree water on a regular basis and walk on uneven surfaces (sand and rock).  I also was able to take some hikes in the vertical direction, something I haven't done in 5 1/2 years.   The Grand Canyon used to be my second home prior to getting ill.   I backpacked there a LOT.  My family continues to hike and backpack there.  So, it was bittersweet for me to get back into the Canyon.  To do some of the hikes and rock climbing that I did was a morale booster for me.  I felt well enough at times to hike very precipitious spots...places healthy people wouldn't hike past. 

Even more of a morale booster has been my very good month health wise in June.   That has been phenomenal, and I sure hope it continues. 

I just saw one of my doctors last week (the other doctor I was unable to see due to a cancelled airplane flight---although we were able to speak by phone which was great).    Both doctors were thrilled that I had made such good progress.  Both thought it was best to continue the current course of medication to see where it would take me.   It was ideal that I had changed only one variable 4 months before, and that was adding in the oxymatrine.  So we know that the illness that hit me upon taking it and my now better days was due to that.  See for further details:  http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=dis...

The one doctor that I was able to see was very happy with my antibody titers for HHV-6, EBVⁱ, HSV1.   He was not happy with the Cpnⁱ antibody titers but felt it was not a good idea to change medications at this point in time.  If I plateaued or got worse he would address the Cpn in a different way.   I would like to add in flagylⁱ or another antibiotic that is a cyst buster, but I have to agree that it is best to not rock the boat.  So, that will be in the future.

My husband did have Afib with a severely decreased ejection fraction (EF)....with no symptoms (amazingly enough).   It was theorized that it was caused by a virus, but no one knows for sure.  He did have high antibody titers to HHV-6, EBV and Cpn.  He was put on minocycline (if my memory serves me correctly).   He was not put on any antiviral drugs since the doctor wanted his heart more stable.   He had a pulmonary vein ablation done to correct the Afib, and has been doing fine ever since.  He never felt ill, so the doctors have decided that no further treatment was needed.

Unfortunately the diagnosis of these various pathogens is still in the research phase.   Just because someone has high antibody titers is not proof that they have the pathogen.  It just means that they were exposed at one point in time.  Very high titers may indicate active infection....but does not prove it.  In my case, so far, my high antibody titers have correlated with finding the pathogen in tissue (except for Cpn which has not been tested for in tissue).  When I've been treated for the pathogen, my antibody titers have decreased and the HHV-6 late antigenⁱ left the tissue.   I have not been adequately treated for enterovirus to bother testing for it in the tissue again.  I'm sure it is still there.  All interesting stuff and the need for research is great.  

Yes, it is truly wonderful to have better days.  May they come more frequently to all of us.

Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

Another thought with regard to the cryptic formⁱ of the bacteria (and for that matter the viruses that stay in the latent form in the body).   I think some of the doctors are also trying to approach the problem two ways....(1) beat back the pathogen (2) hope the immuneⁱ system kicks in and takes over again.  

Obviously, I had all or most of these pathogens present in me in a latent form and I was very, very healthy.   My immune system kept them in check.  A steroid shot to me knee caused a bacterial pathogen to reactivate, and at some point after that the viruses reactivated.  So, the doctors hope to beat back the pathogens in me.  And try to shift my immune system to a more normal functioning state.  (I think from Th2 dominate to TH1).   That should hold the pathogens in the latent state (which I assume includes the cryptic form).   So...to better answer JeannRoz's question, I don't know that they are as concerned about eradicting the cyst or cryptic form of the pathogen as they are trying to get the immune system to work better....for that would keep the pathogens in check.

I believe one of the doctors thinks that the oxymatrine works both ways...to eradicate the pathogen and help to shift the immune system.

At least that is what I think their approach is.

Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

 Timaca, what about your VitD3 status, have you ever check it, and do you get VitD3 supplemantation, and lastly which supplementsⁱ do you get?

 YILMAZ.

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KEREM'S TAKECARER;

Suspıcıon of MSⁱ (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

My Vitamin Dⁱ level was 48.  I found that acceptable being that it was at the end of winter and I had pretty much avoided the sun for the previous 9 months due to being on doxyⁱ.   I have since been out in the sun as much as I can without burning, so I'm guessing I'm making adequate Vit D during this summer season.  I am not taking a vitamin D supplement at this time, but will add in 1000 IU when winter comes.

Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus