Cannot get the past the point of small pressure in center of face. area of concern expands when dose of abxi is missed. Have been on continuous metroi and doxy since oct, went off zithro at the time because of yellowing skin.
This week dr and I did a trial to conform lyme since infection is now localized for some time. Went off doxy and onto suprax... result... got ill, pain area spread rapidly, sore dry eyes and facial swelling.
Going back to cpni protocol and will try another trial and error for staph if possible
Anyway... lyme has been ruled out.. again.. lyme has been ruled out .
So does anyone know a drug that treats staph and not cpn?
Thanks
P.S I hope everyone is well
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MSii TMJ trigeminal neuralgia cfsii neutropeniaii cystitis nephritis optc-neuritis sinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI's

To addMRI in oct showed few
To add
MRI in oct showed few new lesions. Near halt is better than progression right? And like i told my dr, who cares, because i have quality of life.
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MSi TMJ trigeminal neuralgia
cfsineutropeniaicystitisnephritisoptc-neuritissinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI'sHi clammed up!A good
Hi clammed up!
A good combination for staph is Rifampin + Minocyclin.................................. and perfect for cpni as well
http://www.mdconsult.com/das/citation/body/120454080-4/jorg=journal&source=MI&sp=14397966&sid=0/N/14397966/1.html?issn=
Treatment of severe staphylococcal infectionsi with a rifampicin-minocycline association. - Clumeck N - J Antimicrob Chemother - 01-JUN-1984; 13 Suppl C: 17-22 (MEDLINE is the source for the citation and abstract of this record )
Abstract:
During an outbreak, 25 severely impaired patients (mean age 62) presented with severe infections due to Staphylococcus aureus resistant to oxacillin and aminoglycosides. All strains were isolated in pure culture and diagnostic procedures included transtracheal puncture and bone biopsy. Median MICs were: oxacillin 50 mg/l, gentamicin 12.5 mg/l, tetracycline 25 gm/l, vancomycin 0.195 mg/l, rifampicin 0.097 mg/l and minocycline 0.195 mg/l. All patients were treated with rifampicin (600 mg/day) and minocycline (200 mg or 400 mg/day) administered together intravenously or orally bidi. Mean duration of treatment was 22 days (range 5 to 119). Overall results were 19/25 infections cured and one improved. Five were failures due mostly to emergence of Staph. aureus resistant to rifampicin. No side effects were noted. These preliminary results suggest that rifampicin plus minocycline may be useful in the treatment of severe infections due to multi-resistant Staph. aureus.
Citation:
Treatment of severe staphylococcal infections with a rifampicin-minocycline association.
Clumeck N - J Antimicrob Chemother - 01-JUN-1984; 13 Suppl C: 17-22
MEDLINE is the source for the citation and abstract of this record
NLM Citation ID:
6469887 (PubMed ID)
Full Source Title:
The Journal of antimicrobial chemotherapy
Publication Type:
Journal Article
Language:
English
Authors:
Clumeck N; Marcelis L; Amiri-Lamraski MH; Gordts B
Major Subjects:
Additional Subjects:
Chemical Compound Name:
(Tetracyclines); 10118-90-8(Minocycline); 13292-46-1(Rifampin)
Another feature of this fine document is a listing of the appropriate antibioticsi for methicillin-resistant Staph aureus infection. Many physicians do not know, for example, that trimethoprim-sulfamethoxazole is usually useful in patients who have MRSA, but it should be combined with rifampin, according to Kendig. In addition, an antibiotic in combination with rifampin should be used in all serious infections with the exception of vancomycin and linezolid. Both of these may be used as monotherapy. Linezolid has the advantage of being able to be given twice a day and can be used as monotherapy, but it is quite expensive. However, the expense may be worth it when compared to sending a patient to the hospital or to the infirmary for intravenous vancomycin. The clinician should remember that oral vancomycin is useless in systemic staphylococcal infections and should only be used to treat gastrointestinal overgrowth with Clostridium difficile.
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Male 36 years (Germany),CFIDSi, IBSi, Enterovirus, Cpni and Bartonella positive. Started Capi on 02/19/08, Currently NACi 2400Restarted on 20/01/09, Building up to Rifampicin 600,Azi.500 p.d.,Tinii,Pulsed Oral Vancomycin for c.diff
Cesare, good info
Cesare, good info thankyou.
I'd like to trial and error something that works on staph and not CPNi though now to rule out staph. I dont know that there is anything though.
Right now im on metroi and zithro since i had no spare doxyi around, for the past few days until i can contact my dr today to tell him the cephlosporin didnt work , I need to contact my dr and decide which combo is the best choice right now.
What i find interesting is that this cephlosporin suprax had no effect whatsoever where the cephalexin seemed to have had mild effect. Zithromax is acting quite effective for the time being but the dose is 500 a day which when in combo with metro might due my liver in. Does anyone how effective zithromax is on staph?
Anyway, heres my choices
metro and zithro
go back to metro and doxy
metro and minocin
metro and biaxin
rifampin and minocen
Again, cesare, thanks for the article, actually, minocin was the drug i was considering next for the reasons you listed, to cover staph as well as cpn .
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MSi TMJ trigeminal neuralgia
cfsineutropeniaicystitisnephritisoptc-neuritissinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI'sClammed, somethings can not
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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!
Louise, I think its
Louise, I think its possible to go by process of elimination. I think by ruling out what works and what doesnt, one can eventually narrow down the pathogen. We can also note how fast the disease spreads to hone in on a bug's characteristics as well. I'm quite convinced this is cpni with multi drug resistant staph combined with anerobes or (anerobic cryptic cpn).
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MSi TMJ trigeminal neuralgia
cfsineutropeniaicystitisnephritisoptc-neuritissinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI'sdelete
delete
Currently on cephalexin and
Currently on cephalexin and metronidazolei for approx 3-4 weeks now. works as well as doxyi, zithro, metro for me....
Any thoughts? here are mine...
when i took doxy, zithro, metro I got good relief and those drugs work on lyme cpni or staph
When i took suprax and metro i instantly lost that relief, thus it couldnt be lyme because suprax is supposed to work on lyme and it didnt work on me at all. thus at that point it could be only either cpn (because suprax isnt affective against cpn) or or it could be staph because suprax isnt effective against staph either
The kikker....
When i took cephalexin and metro for the past 4 weeks, i have relief again. Cephalexin does not work against cpn or lyme thus it cant be either, however unlike suprax ( a 3rd generation cephlosporin), cephalexin ( a first generation cephalosporin) does work against staph. I have not been on any anti cpn drug for 3 weeks, I have been on cephalexin instead and i feel equally as well as i did on the doxy combo.
Also... suprax does not work on staph but, when i took cephalexin and metro i got relief again
My belief is that staph is the enemy that causes cpn infected white blood cells to attack the staph and instead spreads the cpn via the wbc's until cpn becomes a widespread pathogenic disease.
So yes i do still think cpn is the immunei system aspect /'cause" of MSi... but i believe cpn needs a reason to be chronically activated.
This is ofcourse totally my opinion on my own situation by my own process of elimination, trial and error and experiences.
Plus, lets not forget that montel W is big on raising awareness on both MRSA and dental issues i dont see him in a wheelchair
All just little clues to ponder i guess... has anyone else done trial and errors with meds and made any relevant discoveries?
As far as my next process of elimination actions go...
Ive convinced a dentist to do a pulpectomy on my upper front teeth. A little nervous but if Im willing to die trying to get better a little pulpectomy is no big hurdle :)... whatever it takes. Forward march. Will update after that.
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MSi TMJ trigeminal neuralgia
cfsineutropeniaicystitisnephritisoptc-neuritissinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI'soh, and i will switch to
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MSi TMJ trigeminal neuralgia
cfsineutropeniaicystitisnephritisoptc-neuritissinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI'sI am sorry to read you
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minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, Lauricidin: muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (all well now)
Clammed_up, if you feel the
Clammed_up, if you feel the facial pressure every time you miss the dose it means that the infection is still poorly controlled. Another proof for that are the new lesions on the MRI. After one year of treatment one would expect better results.
http://www.medscape.com/druginfo/monograph?cid=med&drugid=3336&drugname=Suprax+Oral&monotype=monograph
Oral cefixime has been used in a limited number of patients for the treatment of Lyme disease†. In an open, randomized study in patients with disseminated Lyme borreliosis, oral cefixime (200 mg daily with oral probenecid 500 mg 3 times daily) given for 100 days was as effective as a regimen of IV ceftriaxone (2 g daily given for 14 days) followed by oral amoxicillin (500 mg 3 times daily with oral probenecid 500 mg 3 times daily) given for 100 days. However, other cephalosporins (ceftriaxone, cefotaxime, cefuroxime axetil) are recommended by the IDSA and others when a cephalosporin is used in the treatment of Lyme disease. (See Uses: Lyme Disease in the Cephalosporins General Statement 8:12.06.)
Some people with the Lyme disease take Suprax 800 mg daily in addition to Plaquenil, and multiple other antibiotics. If you have borreliosis you should also get tested for the co-infections, because ticks carry multiple bacteria and protozoa.
Low doses azithomycin as monotherapy could lead to Staph aureus resistance
http://linkinghub.elsevier.com/retrieve/pii/S1569199308001380
Your plan to change the therapy is the right one.
Best wishes
Barbara
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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008, but still occasionally pulsing. EDSSi 0 for over 6 years.
Janice, not too sensitive
Janice, not too sensitive to heat no, but there is always a dull pressure in the center of my face below my nose which has been known to be a symptom of lyme, but... if suprax makes it worse and keflex makes it better then it cant be lyme, and keflex doesnt work on cpni either so it cannot be primarily cpn in that site where i have the problem
I think this is anotomical anyway.... a necrosisi process in the septum or nasal bones or dental pulp and facial nerves which leads to systemic infection. A place where abxi cant get, a place that needs to be debrided, cleaned out, but ENT's are such effin cowards in this country/city.
Barbara, you are right, it is poorly controlled, but I havnt found any drug better than doxyi or keflex yet and I want to trial error a few more things before I get viscious with rifampin, minocin, sulfa, glyco's, or linzolid if thats what it takes. Ultimatly, I do what works, and if this is working better than the cpn protocoll right now then thats what i will do.
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MSi TMJ trigeminal neuralgia
cfsineutropeniaicystitisnephritisoptc-neuritissinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI'sYou may need a course of IV
You may need a course of IV Vancomycin to clear the staph. Has it been aspirated lately to determine type and antibiotic sensitivity?
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Clammed, interesting
Clammed, interesting thought about the staph. I was in a car accident when I first went away to college. I must have picked up staph in the ER. Months later I developed granulomas on my legs (round ring-like raised areas). I went to a skin cancer doc who biopsied one and said they were due to staph infection. I recall him treating me with subcutaneous cortisone injections.I don't recall if he gave me abxi. But perhaps this was another trigger for Cpni to travel.
There is some evidence that heavy metals can perpetuate infectionsi and make it almost impossible to clear them. Given my background in metalsmithing and stained glass work, I am sure I have a nice load of these. Currently taking fresh cilantro daily to help chelate metals.
You may want to look into this as cilantro is an easy thing to prepare in salsa, pesto or just blended in a green drink,
http://newconnexion.net/articles/index.cfm/2004/05/cilantro.html
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, Iodoral,
T3, BHRT, MethyB12 injections,Nitro patch,