Sinusitus

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Chronic sinus problems

Pinky's News

Checking through recent post I found this from Pinky, and as Mac commented it might not get the attention it deserves in the place in which she posted it.

"It has been a long time since I have checked the site. Dr. P took me off Flagyli<i</zithro right away because of the extreme die off. Now I am on Vit D (5,000 per day) and the assortment of liver//kidney saving drugs. The last time I went in I bought the Infrared Light, but must confess I have not used it faithfully. I have been getting PT in a warm pool (92) and it has done more for the pain that anything in 15 years.

ruthless1, Canada

Multiple Symptoms, here is my diatribe!!  I was new to the site April 06 & I have Fibromyalgia-FMSi, Chronic Fatigue Immunei Deficiency-CFIDSi/Myalgic Encephalomyelitis">i- ME, Chronic Lyme Diseasewith the usual cornucopia of underlying symptoms, crashes, flu like symptoms, migraines including CPNi, Babesia & recently hereditary genetic Hemochromatosis. 

Plodding on

Pulse update:

Michele: pulse 14 went well, some relief from IBSi pain during pulse, feet felt practically normal, two nights in a row with 7 hours sleep. Post pulse very painful IBS cramps and upset tummy, taking extra acidophillus and anti fungals, gradually improving. Strange things is that when there is little pain in my gut my feet feel much better too...

#13 unlucky for some...

So here I stand at the threshold of one year on the site, having completed 13 purgatory pulses and still bitching about the fact that my most painful ailments are still with me. But what have I got to bitch about, after all I now have a pratically full head of hair, my sinuses are much less painful, I can breath better and I at times enjoy a couple of tummy pain free days in a row. Added to that I constantly remind myself that I have been suffering from a Cpni infection since my early childhood, and it has persisted all my life, so its not going to go away in 9 months...

Fighting to get out!

So now I have a dozen self inflicted flagyllations under my belt and the Cpni is fighting to get out!   How do I know this?  Because my arms, back and thighs are errupting.   Yes, those parts of my body look like a string of volcanoes that have suddently surfaced from the ocean.   They are of different sizes and are at different stages of evolution and when they stop errupting they leave a lovely pattern of red flesh with a pale crusty crater and a tiny red spot in the middle.   This has been going on for a couple of months now, started off with a rash of little widespead spots, some of them grew and some of them stayed small.   All very itchy, but I think that things are quietening down now.   No new ones since I started the last pulse (#12)

Microsporidiosis - has anyone been tested for it?

Microsporidiosis

Has anyone here been tested for Microsporidiosis? One of my main symptoms for several month was diarrhea and sinusitis, and although diarrhea is gone during the ABxi treatment I still wonder, if there isn't anything else playing a role??
If I understand right, Microsporidia could also work as a host for Cpni, since they are parasites.

Until today I was sure, that they cannot play a role, because antibiocs help me (which should't be with parasites), but that is not true, as this article shows.
http://www.emedicine.com/med/topic1469.htm<

Or - asked vice versa - has anyone tried Albendazol just to see what happens?

gitta, Germany

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

Findlay Family fights on

Yes, that's us, Ella, Hamish and I, fighters, scrapper, survivors; however heavy our concrete boots, so far we have always made it back to the surface.

Stricktly speaking of course Hamish should not feature in this blog as he is not likely to ever follow a CAPi for his treatment, but I thought you would like to know that he is slowly making progress after his stem cell transplant.   Someone suggested that Cpni might be implicated in CLL (chronic lymphocistic leukemia), but my husband is much too conservative to try anything as controversial as the CAP, instead he has received a treatment which cost the NHS (National Health Service) $235,000.   At present he is still in hospital, in isolation and getting very impatient to get out.   He is likely to be there for at least another fortnight (two weeks).

Low IgG and IgM and Intravenous Immunoglobulin

Hi everyone,

Part of the bloodwork that I had indicated that I have several deficiencies in my immunoglobulins.  Specifically, I have a very low IgM, IgG3, and IgG4. (My total IgG looks normal, but those two subclasses are below normal levels.)

Have any of you had any tests with those sorts of results or any other Ig deficiency?  Have the tests improved because of/during your time on these antibiotics?

Do the IV antibodies have any chance at all at getting at the cpni inside cells?  Hmm... also, if it does get to them, do I run some sort of risk by having them go nuts on the cpn?

If you have had experience in general with IVIG, I would like to know how you responded.

I believe my doc is willing to treat me with intravenous immunoglobulins to bring the IgG up.  However, if the IgG is low because of CPN or something like it, I'll definitely need to keep on the abxi.  However, I'm scratching my head as to how to tell the difference between the IVIG fixing me and the abxi fixing me. (I have read stories of people who only needed one or two infusions and they were actually completely "cured"... it seemed that their body just needed the temporary boost to get their own systems going...)

2 months & 21 days...

Chaps,

Yesterday was nasty, but I don't now believe it was down to the treatment. The sinusitis, yes, but that's been ongoing. The other was something else entirely...

As regards NACi, mine are Solgar 600mg caps, and they cost a packet. I'll take your advice I think, Sarah. I always used to order certain supps online...

I feel better today. I'm not sore all over. I can move normally. Yesterday felt like the 'flu... I was ill in the night, and I believe I may have a further clue as to why all this has happened. I had a red meat chilli for lunch on Monday, which is completely out of the ordinary for me now (normally jacket potato). Anyway, I believe this thing was absolutely swimming in fat, and I'm not good with too much fat. I imagine this is because I may not desaturate very well. Hence all the omega oils MSers get advised to take and why they seem to really help, I imagine.

Chlamydia Pneumoniae, BOPC and Emphysema

Hello everybody.

I have just discovered this website and all it's rich content. Actually, I am Polo, 33 years old man, Ex Smoker, since 2 weeks and my problem is the following: I am sick since 20 May 06. Fever Peaks, Muscular pains and also sweat peaks. It has been pretty difficult to discover it was a Chlamydia Pneumoniae. First, the Pr. at the Hospital thought it was a Lymphom. I had a Ganglionic biopsy. It was negative (lucky !). After that they found Chlamydia antibody in my blood.  Not so much (around 500 antibody in blood). They also found a polipal maxillary sinusitusi. I had to threat it with Sofrasolone and Becconase for one month. For the Chlamydia, I received Fisrtly one week Biclar (Clarithromicyne) and then one month Maclar (Also Clarithromicyne). After that treatment, I had 4 times more antibody in my blood around 2000). They also discovered an heavy Emphysema and BOPC in both longs (pretty advanced state due to tabaccologic sensitivity (Alpha 1 antitripsin OK in blood)). So I saw a Pneumolog and I stopped immediately to smoke. My longs are already heavy been injured. All symptoms were still presents after Biclar and Maclar so I received 50 Days Doxycycline 200. Fever was nearly dissapeared and I felt quite better. But after 8 days of the end of Doxycycline, symptoms slowly started again. On blood side, antibody decreased a bit but not so much (+- 1600). I went yesterday to the Doctor who advised me to stop all treatments right now and wait. But I really feel unconfortable. I should start to work again next monday and I am really sceared about coming back of symptoms and fever which is still present times to times. What should I do? What can I expect for the future. Does someone have any idea of possible or expected threatments? Sorry if my case seems quite common on such forum but I didn't received much answers at hospital.

I think nobody noticed, nobody answered.

US/Midwest/Omaha
06/28/2006

I've had ongoing acute and recurring sinus infectionsi<i< that date back well over a decade and half.  I've had 2 sinus surgeries within the last 6 years and those seemed to help for a period of time but the infections seemed to reappear within months of the surgeries.  I've also had terrible skin problems that appear when my sinus issues really flare up and usually manifest in me breaking out in cysts.  I've also had some acute stomach issues on and off for 6 years that seem to get much worse when my sinus issues also flare up.  I recently had an upper GI and colonscopy that indicated that I have an ulcer and a hernia.  With the last 6 years I've also had a number encounters with prostatis and bladder/kidney infections to the point where I was passing stones that they thought were most likely caused by an infection.  I've also feel run down and tired a lot and have recent been identified to be a border line diabetic. 

Chlamydia pneumoniae in chronic sinusitis

 This study demonstrates that Cpni titers are significantly higher in chronic sinusitis patients compared to controls. It is not surprising that customary antibiotic treatment did not show much recovery, given what we know about the need for combination antibiotic therapy.

 

 Acta Otolaryngol. 2006 Sep;126(9):952-7.  Links
Chlamydophila pneumoniae in chronic rhinosinusitis.

Edvinsson M,
Stenkvist Asplund M,
Hjelm E,
Nystrom-Rosander C.
Infectious Diseasesi, Uppsala University Hospital, Uppsala, Sweden.
Conclusions. The intracellulari bacterium Chlamydophila pneumoniae (Cp) was infrequently found in nasopharynx and lacking in biopsies from the middle turbinate in chronic rhinosinusitis (CRS) patients. Compared with healthy controls, patients suffering from CRS had significantly higher and more prevalent antibody titers to Cp. However, an association between CRS and Cp could not be established. Objectives. To study the prevalence of Cp in CRS patients and in healthy controls to determine if an association exists between Cp and CRS. Materials and methods. PCRi against Cp was run on middle turbinate biopsies and on throat and nasopharyngeal swabs from 25 CRS patients and from 10 healthy controls. Serum samples were tested for Cp-specific antibodies by the microimmunofluorescence method. Patients that tested positive for Cp or had high antibody titers were treated with antibioticsi. Results. Cp was found in nasopharyngeal samples from two patients but from none of the controls. Neither patients nor controls had Cp in biopsies from the middle turbinate. Antibody titers against Cp were significantly higher and more prevalent in patients than in controls. Seventeen patients were treated with antibiotics but only four of them recovered from sinusitis symptoms during the 2-year follow-up.
PMID: 16864493 [PubMed - in process]

KK2's Protocol Update

KK2 Loves Tinii!!  **cupid's dart**  Day four of Pulse #3--my very first Tinidazole pulse, however.  Tini is a breeze compared to Flagyli, for me.  No Baclofen, no pain meds-sleeping best I have in months.  I have noticed a subtle change in my gait--I find that if I slow down and increase my proprioception by resting my hands on the top of my legs I walk almost normally. 

MarieR-- this reminds me of how you talk about neurologic re-training of muscles.  And like Rica says, move like you used to--imagine your feet/legs/whatever moving easily like before.  I have combined your thoughts here-lol!  It really works for me.  So exciting!!

Diseases associated with Cpn: the exhaustive list

I have culled from Mitchell & Stratton patent #6,884,784 an exhaustive list of diseasesi where Cpni has been implicated as a possible cause or co-factor (reference: Mitchell & Stratton patent #6,884,784):

Diseases where an association has been discovered between chronic Chlamydia infection of body fluids and/or tissues with several disease syndromes of previously unknown etiology in humans which respond to unique antichlamydial regimens include:

Editorial comment: Strong findings from their research. If you have any of these it suggests to me that at least an empirical course of the combination antibiotic therapy is strongly indicated, with or without serologyi.


Multiple Sclerosis (MSi)
Rheumatoid Arthritis (RA)
Inflammatory Bowel Diseasei (IBD)
Interstitial Cystitisi (IC)
Fibromyalgiai (FM)
Autonomic nervous dysfunction (AND neural-mediated hypotension);
Pyoderma Gangrenosum (PG)
Chronic Fatigue (CF) and Chronic Fatigue Syndromei (CFSi).

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