"Generally Falling Apart Syndrome"---Here Comes the Glue!

Steve and I were gone from home 14-1/2 hours today for the long round trip and long appointments with Dr. X. This was my first time as his patient. Complete and much needed affirmation. We're happy, tired, sleepy, and going to bed. I'll share details tomorrow on both of us.

Cypriane~caregiver/advocate for Steve (SPMSi) - Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive - Wheldon CAPi since Aug.06; antivirals; chelation; LDNi; GF/CF diet.

Cypriane (self)~GFAi Profile: Cpn indicated by reactions, PBSer, borderline diabetic, high cholesterol/triglycerides, HBP, elevated liver enzyme/calcium/iron/RBC/thyroid counts, chronic respiratory infections (before starting the supplementsi recommended on the CAP), arthritis, DISH, ARD, dry eyes/dry mouth/dry skin, developing cataracts, macular granulation/retinal inflammation, carpal tunnel syndrome, fibrocystic breasts, history of fibroid tumors ending with hysterectomy, fatigue, tinnitus, significantly impaired a.m. balance/cognitive function/coordination. There's probably more, but I can't think of anything else right now...that's enough anyway.

 Okay, okay! Joyce, you old over-achiever, you. So, you qualify! Give her a CAPi... Please! Ba-da-boom!

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Hurray!!! You are so patient.   I think I would have given in a long time before you.   Still you can now both get better together, and be pulse grumpy in unison.

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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

Guys, thanks for celebrating with me. Now that things are moving, I have a decision to make. Any input would be appreciated. My dilemma is the same as Gitta wrote a little while back. I am now holding an order for lab work which includes testing for Cpni IgM and IgG antibody titers. This will likely be the only Cpn test I will ever have. For many months, I have been using at least four supplementsi that kill Cpn EBs, and a couple of those possibly kill or inhibit life-cycle phases beyond EBs (though not comparable to the CAPi). While I'm anxious to get on with things, I don't want to blow my only chance of positive testing. How long is long enough to wait for RBs to start spitting out EBs and for the immune system to respond likewise with an increase of antibodies? One week, two, three, four, longer? I'm also to be tested for Mpn, and at least one of the supplements I've been using may have been killing some Mpn as well.   Additional factors that may or may not affect the situation are that I had some abxi several weeks ago related to recent dermotological surgeries, and yesterday, Dr. X gave me an injection of a steroid called "Celestone" for an immediate calming-down of inflammation.  It's been a few weeks since Gitta posted this concern...has anyone had any subsequent thoughts on this?

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpn indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce (self)~generally falling apart as detailed above.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, I've been waiting for you to post:  I didn't have a test until I had been taking doxycycline at full dose for about three weeks, and had titres of 1:64, which is minimal.  David had titres of 1:128, not much more.  Most doctors in the UK at present who rely upon readings would not treat for either of these levels.  My reading of 1:64 is quite likely to have been higher than before starting treatment, according to Chuck Strattoni, so I am glad that David did not take the majority view.  He often does not bother to get people tested: he relies upon experience and treats empirically.
 
Are you reliant upon high titres to get Dr. X to treat you?  If not, just go ahead and have the tests done........Sarah
    
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I'm not ignoring you! (<quite impossible I think>) but not ever having been tested I know nothing of the levels or of the likelihood of Cpni showing up after the limited treatment you have undertaken.   So I shall be silent... or nearly silent....

 

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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

Jim usually jumps in with a comment on this subject, but it seems the 'kill-factor' works in your favor, as a bunch of dead little cpni carcasses should be floating around in your system and registering in the tests.

I had a cpn-specific test done September of 2005 and never called for the results because, by then, I had a prescribing doctor and didn't need to worry about convincing anyone.

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

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

Thanks all for the feedback. Okay, I think I'll just go ahead with it. And no,I don't think my treatment is dependent on the titers. This guy actually reads, remembers, and discusses the information he asks you to provide, and I tried not to leave anything out. Also, we had a short talk about couples/families sharing the bug, and he agreed that, with my history of respiratory infections and Steve's accelerated progression following our marriage, it was likely that I was dispensing Cpni or Mpn or both to Steve at a level much greater than his past general exposure.  I should have told him that the first gift Steve ever gave me was a package of cough drops (I told y'all I was a cheap date!).

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpn indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce (self)~GAF syndrome

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Dianna is currently resuming her CAPi for GFAi -- GERDi, rosaceai, achey joints (mild FMA?), migraines, dry eyes, mild hypertension">i, elevated cholesteroli, and diarrhea/constipation (both, alternately) that all started at about the same time that I got sick.

 Her titres weren't especially high, so the doctor put her on a trial run (doxyi and zithi in the usual doses, 2 day pulse every week.) When she started zith, her eyes watered continuously for almost a week! Over the course of two months on doxy and zith, and 4 pulses, her GERD nearly vanished, her migraines went from 4 per week to two a month, and her feet don't hurt when she gets out of bed. She says the bowel problems are gone, and that she can now drink a glass of wine without turning bright red.

The doctor had her stop everything because he was worried about some swelling in the ankles. While she was waiting to get in to see him, the migraine frequency went back up to one a week, or maybe two. Her joints started to hurt her again, and the bowel problems were coming back. Now he's had a chance to check her, and she's starting back on a CAP.

I didn't say anything before, because I felt funny writing about someone else's conditions, but she said it's ok. I think it's important to build a corporate history, even if it's anecdotal.

Of course the cholesterol will need some blood work before we know anything. 

 Ron 

 On CAP for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazolei -- 5 days on, 7 days off.

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Ron, Thanks for writing about Dianna. I hope others will "speak up" about their GFAi profiles and experiences too. And I wouldn't feel strange about discussing your loved one's health issues as long as she approves...I've been doing it on this site for almost a year. If not for Steve's MSi, I wouldn't be here, and I feel that sharing his CAPi experience is worthwhile for others in his shoes.

I have three reasons for seeking this treatment:  1) so that I don't re-infect Steve, 2) I need it for myself, and 3) to be a trailblazer and example for my family members who also need it.  I come from a family of three sisters.  I've discussed my oldest sister here before, but not the middle one.  The middle one of us is a different body-type and has a rather different set of health issues.  Like Dianna, she has migraines, high cholesterol, and touchy bowels.  She also has quite an assortment of food allergies and sensitivities, and there are many medications to which she is overly sensitive.  I'm hoping she will follow in my footsteps and drag along her gentleman friend who has COPD, CFSi, and fibromyalgia.  This guy is an actual rocket scientist and would see the sense in the material here, but he won't spend much time on the internet, because he is also dyslexic (the same reason Steve won't).

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce (self)~GFA syndrome

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

I understand what you are saying Ron, like Joyce I write about someone else's health. For the same reason as Steve, Ella saves her writing efforts for work, but she often reads what people say here and so I have to (<watch what I say>).

It is important though to report all the symptoms that we experience on this protocol, or individual symptoms could be interpreted as contraindications of the treatment. I too have suffered from oedema, and along with a number of other symptoms that have flared up since I started this treatment it lasted about three to four months before disappearing.

Things get worse before they get better, and they get worse for a sustained period in my experience, things like skin rashes, painful gut, swellings, hair changes, cough, joint pain and one I am going through at the moment, further elevation of my blood pressure.

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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

I had MSi, multiple sclerosis or disseminated sclerosis as it was apparently and more accurately known until the sixties, long before I met David, but we both got the same respiratory infection shortly before My MS started to become much more aggressive and David's cardiovascular problems really started.  I had MS and David was already developing fibromyalgiai, so we were likely already both infected with CPni, but since chronic infectionsi aren't catching, it took the new infection to throw us both over the edge.  It would likely have happened anyway, with both of us.
   
You do seem to get worse before you get better: I remember a few months into treatment, we both went to the Rowing Club and people were looking at me because I looked so ill, but by this time I had got my mind back and was starting to rather fumblingly be able to do something with a paint brush.......Sarah
    
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.
Glad Dr. X is helping you out - that is great news. My daughter sick with fever for 4 days - took her in to see dr, today and tried to get antibotic for her with no luck. I also worry my entire family is infected. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Wiggy are they taking NACi?

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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

It's so good to have friends to celebrate with us. Okay, about my appointment...I had been apprehensive as to whether or not Dr. X would even want to know about the respiratory, diabetic, arthritic, and cardiovascular issues, but he surprised me. He had combed over my blood test results and other records from the past three years and brought up an issue I didn't even know I had---thyroid problems. He also noticed that my gynecologist stopped my HRT late last Fall. I practically apologized for taking up space and time in his office, not having a horrible illness. When I said that I felt like I was headed for a tipping point, he said "Exactly!" He even was glad to have the rare opportunity to be able to help someone before they reach that point.

He started talking about Potbelly Syndrome and Metabolic Syndrome X, he remembered that I had given him "The Potbelly Syndrome" last July, and he said he had already been lecturing on Metabolic Syndrome X for some time.  I talked about my mother, both sisters, and I all having higher than average bone density and all having hyperostosis in one form or another.  He said that the bony overgrowths were caused by a mis-reaction to inflammation that probably has a genetic source.  I told him I had stopped supplementing vitamin D and calcium since learning of the hyperostosis, asked if I should resume taking them or continue to abstain.  He said it would make no difference with regard to the hyperostosis, because if my body was determined to build bone at inflammation sites, it would steal bone from other skeletal sites and cause osteoporosis in those places.  Aha! 

About my suspicion of having shingles making the skin on my back hypersensitive when I had the DISH-precipitated nerve pain back in December, he said I probably did have shingles then and probably still do now even though I'm more comfortable.  He talked about the shingles virus being a ready opportunist where there is nerve inflammation.  About my dry eyes...he said he sees more dry eyes in his office than an ophthalmologist, that it's a very common symptom that accompanies many of the conditions he treats.

I've been trying to figure this guy out---he's a neurotologist, an allergist, and a sports medicine doctor.  He treats people with balance and dizziness problems, autistic kids, people with neurodegenerative illnesses, people with mycosis fungoides, and people like me.  He now has a waiting time of four months, but his waiting room is not very busy.  He spends quite a bit of time with each patient.  I even saw him step outside and make a "car call" on a patient who couldn't or wouldn't walk into the office.  All this variety seems unfocused until realizing what his patients all have in common.  It's the same thing all the illnesses discussed on this site have in common (besides Cpni, of course)---INFLAMMATION.  If I had to pick one word for the type of doctor he is, it would be "inflammologist."  I should have realized this at Steve's first appointment last Summer when he said "There is no such disease as MSi---it's inflammation."  Anyway, he treats to get rid of inflammation by getting rid of the source, not just manage it.  That includes getting rid of as many inflammation causing factors as possible, including pathogens that cause chronic infections...like Cpn.

So I'm being tested for Cpn, Mpn, Candida; there will be a comprehensive metabolic profile of tests; thyroid tests; sex hormone tests: IGF-1, C-reactive protein, homocysteinei, hemoglobin AIC, insulin, and DHEAi-sulfate levels will be measured.  He intends to use the information to prescribe a custom HRT blend.  I don't expect he will prescribe the CAPi until the test results come back, but I think he expects to see a positive reading for Cpn or Mpn antibodies or both.  These test results will probably take 2 to 3 weeks to come back.  In the meantime, I'll also have a urine heavy metals test when the kit arrives in the mail.  He prescribed Famvir which I started today.  That's the same antiviral that made my morning impairment go away in December.  I also have a prescriiption for Amantadine to start in 4 weeks. 

I'll be giving up the blood in the morning, then there'll be hand-wringing until after Easter.  It won't be like prior bouts of anxiety, though---this time it's only a matter of waiting for time to pass, not a matter of wondering if I will get the type of care I need.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpn indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce (self)~GFAer

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Hi Joyce,   Wow, an "inflammologist".   We need more of these!

Glad to hear you had such a great appointment... 

On Combined Antibiotic Protocol for Cpni in Rosaceai since 01/06

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-
Joyce, He covers everything - I am with Red - we need more Dr. X's and since you have to travel so far, it is great he is treating both of you. Michele, they are not on NACi but I must start them on it - I was thinking about this today, what would the dose be for a 50 lb child? On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

 Wow. Another Dr. Powell. These guys should talk. You are very graced to have found him, he's, well... "Just what the patient ordered!"

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Red, Seriously (and I think you're at least half-serious too), there is the room and the need for that field in medicine: Inflammology.

Wiggy, Glad you're thinking about NACi for the kids.  Just laying off NAC and the other EBi-cidal supplementsi for 2 days, I'm getting coughy, sniffly, and spluttery again after being free of respiratory infections for a year while taking those supplements.  Imagine...snot-free kids!

Jim,  Yes, these guys should talk, and I'd bet you're the guy who could orchestrate it.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce (self)~GFAer

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Well, Joyce! What an incredible guy! My favorite line is: he said "There is no such disease as MSi---it's inflammationi." Indeed, I've thought that all along! Glad to hear you have such an inquiring mind in your corner! Raven, CAPi since 8-05 for Cpni and Mycoplasma P. for MS and/or CFSi

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

Hi cypriane, my further treatment is absolutely dependend on my laboratory values which I expect next Tuesday. I was tested for lyme disease, mycoplasma, bartonella, chlamydia in serologyi and the direct detection from sinus material in C. pneumonia. If all the test results are "negative", I will expect no further treatment at all. These lets me really hope, that the titers haven't changed and if there is any relation between my condition and titer it must be very high, since I feel horrible. My eye ripped up again this morning and all other symptoms are very bad. Will this ever find an end? I hope we will be lucky..

gitta, Germany 

Postinfectious arthritis, CFSi, Asthmai, Hypertension">i, currently on no protocoll

gitta, Germany 

Postinfectious arthritis, CFSi, Asthmai, Hypertension">i, Zithi since 20th Sept 06 -  3/7 500 mg. Doxyi since Nov 06 - 200 mg per day, NACi 600-1200 per day

Hi gitta,  I'm so sorry for this time you are languishing in the grip of infection.  What exactly is going on with your eye?  It sounds terrible.  Surely, if sinus discharge is what was tested, there should be a high enough level of Cpni present to get the result you need for further treatment.  Did you say whether or not you are taking NACi right now?  Please keep hoping, gitta, I'll make your cause my special intention at Mass this weekend.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpn indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

cypriane, I received the test results from the direct detection today: PCRi from sinus material negative
No specific IgM and IgGi antibodies in MIF
They did not test IgA - the thing I will never understand. So if the other test will also be negative ... I really do not know, what to do next.

gitta, Germany 

Postinfectious arthritis, CFSi, Asthmai, Hypertension">i<

gitta, Germany 

Postinfectious arthritis, CFSi, Asthmai, Hypertension">i, Zithi since 20th Sept 06 -  3/7 500 mg. Doxyi since Nov 06 - 200 mg per day, NACi 600-1200 per day

Dear gitta, Try to stay calm while you wait. I truly believe that there is a way around any obstacle, and I'm not just saying that because I'm American. Yes, I know we have a reputation for being overly optimistic and not appreciating that things can be more difficult in other societies...and Texans may be the guiltiest of the lot. This is a truly international site with scattered users who have managed their way around overwhelming obstacles. The first place to start is by believing that there is a way around the obstacles. If you don't believe the way exists, you will never find it. So believe, and start thinking in ways you have never thought before. Think "out loud" to us and to others. Sometimes the answers will come out of your mouth before they have taken shape in your mind.   We are listening.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce (self)~GFAer

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Gitta- The sinus test is just wrong for any of us, unless we happen to have an active respiratory Cpni infection. He needs to test the blood serum antibodies! This is the difficulty, even the "cpn expert doctor" types only know about it as a respiratory pathogen. They don't seem to have read the research on it crossing over via macrophages to other tissues, and it being found in coronary plaques, etc. 

Try going back to him with your translation of "A Doctor Close to the Vanderbilt..." who actually is Dr. Stratton by the way, along with the interview with Dr. Stratton that describes how cpn infects multiple organ systems (the one with the pictures), and see if he will test your blood rather than sinuses. 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim, the "No specific IgM and IgGi antibodies in MIF" was a serum test. But I wait for another Serum test including the IgA antibodies. The laboratory where the tests were negative now, is one that negotiates chronical infectionsi - I really wonder if such test results may be political ones? Well, I wait for the other results - but it was disappointing anyway. Cypriane, I don't want to "spam" your thread, I hope it's o.k. for you. Please write your results!

gitta, Germany 

Postinfectious arthritis, CFSi, Asthmai, Hypertension">i, started Rifampicin 300 mg daily on 24th March 07, NACi 600-1200 per day

gitta, Germany 

Postinfectious arthritis, CFSi, Asthmai, Hypertension">i, Zithi since 20th Sept 06 -  3/7 500 mg. Doxyi since Nov 06 - 200 mg per day, NACi 600-1200 per day

Gitta, This thread seems to be the current forum for GFAi syndrome, and I welcome that. I'm finally getting some help, but you are not. Keep "talking" to us...maybe our collective minds can help. At the very least, you have our moral support.  Again, your cause will be my special intention at Mass this morning.

Everyone, I apologize for blabbing insufferably like a motor-mouth all week...I'm blaming it on the steroid injection.  I have to tell you about something new, though, so please forgive this silliness.  I woke up this morning with DROOL on my pillow.  My mouth was wet and my eyes were moist.  My bladder had not made me get up at 4:30 a.m. as it normally does.  Is this a fluke or a change in tidal patterns?  There was no relief of my dry eyes and mouth in December when I took Famvir before, and I suspect that this new relief may be due to the combined effect of Famvir plus a reduction of inflammation provided by the steroid.  Dr. X had indicated that the probable culprit behind the dry eyes was viral...hope he's right.  Something I'm curious about is this:  do die-off reactions happen when viruses die?  Despite the somewhat "manic" effect of the steroid,  I've been tired, draggy, sleepy, and lethargic since starting the Famvir.  Those are some of the same symptoms I've experienced before from bacterial die-off.  We worked hard in the yard yesterday and last night at cleaning.  Steve worked circles around me, but I perspired profusely despite the lethargic efforts.  This morning the lethargy is gone.  Did I sweat it out?

Now, my reactions to NACi and abxi indicate Cpni infection.  I'm ready to have my arteries, joints, and respiratory system scoured out by the CAPi.  If my test results are as unproductive as Gitta's, I hope Dr. X will be willing to prescribe it based on my NAC and abxi reactions.  Gitta, please be thinking about your plans B, C, D...

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpn indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce (self)~GFAer

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Dry eyes - I hope everyone with dry eyes noticed your good news of waking up with wet eyes! Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgiai, interstitial cystitisi, sinus: minocycline, Zithromycin, Tinidazole or Flagyli, Valtrex

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)

cypriane,

"....The first place to start is by believing that there is a way around the obstacles. If you don't believe the way exists, you will never find it. ..."

 

You are absolutly reight!

 

Jan CR /Prague; On CAPs:12/01/2005; 20 years CFSi, then fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension">i. March 07 - big improvement

On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension">i... 

Here's a laugh.  I'm vigilant in making sure Steve takes all his meds and supplementsi.  The activated charcoal he takes in the middle of the night when he answer's nature's call is critical in enabling him to function optimally on a day to day basis.  Since Dr. X prescribed me the Famvir, my eyes are feeling much better and my morning impaired balance and fog are much improved, BUT I became more sleepy and tired too.  I didn't even recognize those die-off symptoms in myself until a few days ago, even though I've experienced them before.  I had been unsure whether or not viral die-off would cause the same symptoms as bacterial die-off, but the answer became clear enough when taking the charcoal myself made a huge difference in the way I felt.  Aha!  So that was why my eyes were bloodshot even though they were moist for a change!  They cleared up too after taking the charcoal.  Somehow, observing someone else can be easier than observing yourself.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

Joyce (self)~generally falling apart.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

To paraphrase the old parabole about judging others, maybe we are programmed to

"see the speck that is in our brother's eye, but do not notice the log that is in our own eye".   Now I'm not using the parabole in its intended meaning here, but just using it as an observation of human nature, in that it is easier to look out than look in.

But I also think that as we get better we notice more how our body feels.   I know that pain and discomfort has been my normal way of feeling for many years and so I don't notice another extra discomfort, it's just part of the background noise of daily life.   Once you begin to have days when you feel better overall, you certainly notice when something is not right, and you feel agrieved when the comfortable feeling goes away again.

 

Michele: Wheldon CAP1st May 2006 for ailments including IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. Spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMSi. Sussex UK

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

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