Need help for my sister. Why CPn test POS and then NEG?

I've written about my sister before.  She asked to be tested for CPni at Cleveland clinic and came back positive, something like 1/125 or close to that.  Cleveland Clinic asked her if she wanted to be treated with 1 abxi for a few weeks. 

She has lung and sinus problemsi, fibromyalgiai, fatigue and serious heart and vein problems and inflammationi.  Basically the falling apart syndrome.  I tried to get her started on CAPi, but she didn't follow through, claiming she didn't have time to get sick.  She did take NACi for awhile.  Now she is really sick, with pretty bad heart problems.  She has been diagnosed with everything under the sun over the years, but then they always end up changing their minds and saying it probably isn't what they thought it was.

Fortunately, she ended up with a temporary doc who graduated from Vanderbilt, and knows Dr. Stratton, and is familiar with CPn but does not know the details.  He finally said that he thinks she probably has  an autoimune disease caused by one of 5 infectionsi

He is NOT sure she has CPn because of her 2nd negative test and her not reacting to NAC.  He said that he thinks she might have it, but also could have any of the other diseasesi that could be causing this inflammation.  He thinks that an infectious disease doc should explore ALL 5 of the diseases to treat the correct ones.

I figured she has CPn, but she tested negative this time for CPn with an antibody test. (After the positive about 1/2 year (or longer) before).  She also had taken NAC for a long time, 4 pills a day, and had no response. 

The question (and confusion for her doc) is, why would she have antibodies on the first test, and not on the next test?  Is this common?  Why would she not respond to NAC?  Is her immunei system down so no antibodies, even though she may have CPn?  Or does she not have it now?

The other problem, according to this doc, is that ALL 5 of these infections  are nearly impossible to find in the body.  He did tell her to make an appointment with a new infectious disease doc in town, whom she can't see until Nov 1, who might be able to work with Stratton.  But he kind of made her afraid that maybe she cannot ever get well, because if they cannot find the disease, they won't know what to treat for, and they won't treat her.  Is it that impossible to find the diseases?  Does it really matter?  Perhaps a knowledgeable doc can treat for different suspected things and guage the results to know what to do?

Another problem is that she has a bad heart now.  They had to implant a pacemaker, but that is not the solution or really the exact problem.  She feels lousy for lots of reasons.  If she starts treating for CPn, will she survive the heart damage of heat shock proteini with steroids?  Should she go slower due to her delicate condition, or faster, due to the dangerous affects of heat shock protein to the heart?

She thinks she needs to let her body recover from the surgery and from feeling lousy to start any treatment.  The doc agrees.  She is supposed to start supplementsi and NAC again. 

These are the puzzles going through my mind.  Unless she gets a very good and knowledgeable doc, she needs to figure out some of this stuff herself to know what to do. So I'm posting this in case anyone can give any answers or suggestions.  I realize that some of these questions (below) are probably requiring a good doc to answer, but if anyone knows any answers or has any idea about any of them, it would help my sister a lot.  Some of you guys  probably have as good an understanding as anyone with your backgrounds and treatment experiences.

So, does anyone know why an antibody test for CPn would CHANGE to negative?  Does anyone know why she wouldn't react to NAC, when I, as her younger sister reacted strongly?    Is she doomed because no one knows how to find these diseases, so they won't know what to treat? (I know this is partly true, but probably not a road block with a good doc).  Should she start treating CPn first, since she had one positive test, even if she's not sure she has it and she might have other infections?  OR should she wait until the doc knows what she has?  Can she even do it with a bad heart, considering the heat shock protein problem?  She is about 62 years old.

Comments

Reenie, your Vit D levels

Reenie, your Vit D levels were 49 in May, same as mine recently. How much D are you taking now and how much were you taking from Feb to May to bring it up?

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.&am

Rica, I took very little

Rica,

I took very little from Feb to May, just what was in my multi-vite starting in March, (400 ius) then adding in some from a Calcium supp, for a total of about 800ius/day.

The main thing I used was the Phoenix sun.  Cool

The experts say, and I proved them right, if you're close enough to the equator, you can get 10-20,000 ius/day from 20-30 mins full body exposure.  That is how I did it.  

And I proved to myself that's what happened because I had to ADD another 1000 ius/day in a supplement since my D level fell again as it got too hot to sunbathe and I began to get too sick.  My D level dropped from 49 in May to 30 in July and I worked it back up now to 55 with the added D intake.

PS ~ My D level was always somewhere in the 40s and 50s until I began the D and light deprivation on the MPi.  I think for some folks with a very low D as in MSi, people who stay indoors, use alot of sunscreens and live further away from the equator will have to take alot more Vit D than I do because I'm getting alot from the sun to get and maintain adequate levels of Vit D.  

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Reve, I know the feeling of

Reve,

I know the feeling of hope and anticipation with waiting for a new Dr and his advice often brings but I also know how traumatic and hopeless it is when he offers nothing or even worse, his negative input.  

I went to see an ID Dr this past May, only to really get some lab tests done as my GP had no idea what to test me for and he felt I needed to "first see" an ID Dr and get his advice/opinion for my case.  Fortunately for me, my GP has known me for nearly a decade and he's watched me struggle trying to function better, sometimes successfully, oftentimes not.  

Anyway, back to the point... 

The infectious disease Dr clearly questioned my longstanding diagnosis of CFIDSi. He said "Well, how do you KNOW you have it?"  as if this was something new for me.  Heck, I've been disabled for 11 yrs now and limped my way to work the last couple of years as many others here have, and some still have to do.  

Then, the ID doc went on to say that the tests were all bogus in that he said, "I should run MY labs right along with yours and my titers would probably even be higher than yours" stating that normal healthy people test positive for many of these infectionsi.  

I had alot of complications with the lab, taking 3 blood draws, numerous trips back to the Dr's office, and several weeks of follow up to FINALLY get all of the results. 

Lab Results Finally! Interpretation & Suggestions Anyone?<

The tests clearly show that I have chronic infections, if you read them according to the experts, but the ID Dr didn't want to see me again and his nurse told me my tests were "all normal."  

I was fortunate enough that my GP was willing to rx me the CAPi meds after I did this and he's willing to retest me once a year now to see what's happening.  But I will say, it wasn't a total waste since my GP would not treat me with CAP until AFTER I went thru this exercise in futility<.   Laughing

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Just one more thing about

Just one more thing about lab results you can read it in the above link to my labs... 

I too had more than one lab test done for CPni and myco P. from two different labs, 3/08 and 5/08.  

The first CPn showed "normal" in range for all chlamydias while the second showed much higher IgGi titers for Chlamydia T, indicative of past infection.  So what happened to the past infection?  Why did I show I had a past infection in the second testing but not the first?  I think this would be similar to your sister's results. 

For me, I believe my immunei system was too weak to show much reaction to the tests before I began the adjuncts and boosted my immune system.  I wasn't on any abxi for either test, only supplementsi and sunbathing. I was working on getting my D level up at the time and had only started after the first test.  My Vit D was 8 in Feb and 49 in May.  Cool 

The same thing happened with the mycoplasma p. infection testing first mid range or what is called a "low positive" while the second test revealed a high positive.  IMOi, rather than lab difference, I think BOTH results showing lower in March and rising titers later are indicative of a boost in my own immune function.

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

And I have three sisters

And I have three sisters who have very dramatic signs and will not give this a thought. The one with MSi, who is also an RN, went to an MS meeting and sent me an email urging me to go to one: You will find it interesting and will "LEARN A LOT". YUCK! I think I should send her my blog about the last one I attended (just to make trouble) when they took away my microphone - I still received a standing ovation - from the ones who could stand, and a sitting one from the ones in wheelchairs.

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.&am

I've got two sisters and

I've got two sisters and two brothers and all are showing signs of Cpni problems and do you think any one of them will take any notice....  Even with my incredible reversal of alopecia">i.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Thanks, Michele and Reenie

Thanks, Michele and Reenie for your help.  Yes, I know all too well about all the people who ignore and refuse to even take a look at this info. They are all around me everyday, including friends and family. 

My sister  is at the point where she is starting to take this seriously, but is getting confused by contraditions about antibody tests and lack of reactions when she took NACi.  She is asking me questions, and I want to give her good guidance.  She has to wait until November to see the infectious doc.   Right now she is still recovering from her hospital stay and isn't feeling up to posting.  I'm going to read your post to her.

I think she has CPni, and possibly other stuff, too, but she was taking abxi in the hospital, so I bet that affected her second CPn test.  As far as not reacting, I'm confused, as I'd figure she'd react to NAC because I definitely did, but perhaps her immunei system may not be up to par.

Thanks so much for telling me about your experience with minimal reactions and your suggestion for her to go with Powell's protocol, as that would not have occurred to me.  I don't know if my sister will follow through, but I just want to make sure that I have given her the best info I can, since it is so easy to get lost in all the other contradictory stuff the docs often say.  I want to be able to say that I have done my part in terms of informing her and, of course, the rest is up to her. 

Reve'

Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NACi 2400mg; doxyi 100mg x2, Biaxin 500mg x2, supplementsi, 1st pulse Flagy

Reve, The way I

Reve,

The way I understand  the false negatives for CPni and other tests are that the bacteria go intracellulari and may not be where they could be found by antibody testing.  So depending on what's happening to someone in a weakened immunei state with a chronic infection, they may test negative.

If your sister was on antibioticsi that caused the CPn to go cryptic, I think it could change the test results.  Maybe some other meds would do this as well?  I'm not sure, but the tests aren't always accurate and they aren't always revealing anyway.  

In addition, as far as I know, we don't really have a valid test to check for chronic infection.  We are using IgGi for past infection and going by the numbers, much like the Drs that look at the viral infectionsi do.  According to Dr Stratton, 1:64 would be high enough to look at treatment and according to Dr Powell's literature, there are alot of very sick patients that test negative because of such a weakened state of immune function so he tests their healthy partners to look for CPn.  

I had very subtle reaction to NACi and to the bacteriostatics but had much more reaction to the bactericidal pulse and I think it was because most of my infection was hidden deep inside the cells that are supposed to protect me from these infections.  I can also get some good reactions from adjuncts and did so before ever starting CAPi

I can't comment about how she ought to treat this but cardiac involvement is typical from chlamydial infections.  You can read about that in "The Potbelly Syndrome."  

It sounds to me like she might need someone like Dr Powell or to start with his protocol listed here<, which uses the supplementsi to begin getting some die off using adjuncts for quite awhile before any antibiotics.  Dr Powell seems to be her best bet, IMHOi or at least his protocol.  

PS I know you're very concerned for your sis but SHE needs to be on board and be wanting and willing to work on this.  FWIWi, I have a whole sick family that would benefit greatly from CAP but not a one of them that would ever be willing to do it.  Frown

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

I'm not au fait with the

I'm not au fait with the vagaries of test results, maybe someone else might explain it.   It is not unknown for tests to be wrong...

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.