Prednisone while on Mino

[Trudi]

@Robert wrote:

the night sweats are continuing also i have developed thromboypenia on both arms

Hi Robert–
When I started minocycline, I developed petechiae on my lower legs https://en.m.wikipedia.org/wiki/Petechia. The minocycline brought out my underlying infection and I was subsequently diagnosed with Lyme.

I wonder if your night sweats could be heavy duty detoxing?

Glad to hear that there is so much improvement; looks like you are on the right track.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Robert]

Hi Trudi

Many thanks for your reply,got my blood results yesterday, crp 21,esr,48,white blood cells 13.9,neutrophils 10.9.,as i suspected seems my lungs are infected again, the high neutrophil count confirms this as they invariably migrate to the lungs,i have had problems with them since methotrexate wiped out 50% of them when i was first prescribed this drug in 2008, i have copies of all blood tests since then and more often than not the neutrophils have been elevated over the years since being diagnosed with the R.A.,,,,,my gp gave me eryomicin apparently the drug of choice in pneumonia,some months ago when it flared he gave me roxymicin and it cleared it up in a week,no more night sweats for 2 months or so then it started again, i thought the mino would have prevented any infection re-acurring but seems this is not the case,i have crackling in both lungs a classic sign of r.a.,,anyway i have an appt.with the respitory people on monday so will see what they say,,in regards to the thromboypenia my gp says its probably the steroids,well i know its not as , doctors just open their mouths and say anything that fits the bill,dah,,,i have no faith in any of them and this also applies to the ones in the uk as well,,i believe unless you have a one on one doctor who is in a position to know you well then you will never get the proper treatment from any of them, a doctor once said to me before i was diagnosed,,Robert depending on how much money you have will depend on the treatment you get,yea well he wasnt wrong,,he also said any problems you have medically will show up on your hands,,yea well my hands the palms of them have been bright red for years so looks like he was right hey lol 🙁 ….i also got result of my DHEA level ,i asked for this test after reading the majority of people with R.A. have depleted DHEA,,my dhea was 0.6..the normal is 1.4 to 8.,,apparently this hormone is important as it is a potent anti-inflammotory,,my gp did say prednisolone depletes this hormone also it diminishes with age,,well thats not good enough,,i want every hormone back to a normal state i dont care what they docs say,,as i said before i am a mechanic to trade so imagine you bringing your car to me and instead of putting 5litres of oil in it i only put 2 litres also i just put 3litres of water in your radiator insted of 6 litres,,,i can assure you yes your car will run but not for very long until serious damage is done to it,,well i believe the same principal applies to us and dont let any doctor tell you otherwise. anyway i dont half rabbit on hey lol 😎 ,,,anyway Trudi thanks again hope you are doing fine,,will update after i see the respitory people.Robert

[Robert]

also Trudi here is a link i found that tells you all about DHEA,hope it is of assistance to anyone also pregnenolone is another important hormone http;//www.lifeextensionvitamins.com/dhreth.html,,,,, i also came across this,it maybe be of assistance,,its all about anti biotics in RA and other diseases ,,,,,http;//www.hindawi.com/journals/mi/2012/636157/,,,Robert

[Robert]

been reading some of the posts on here,,and it saddens me so many people have this horrible disease and are really struggling with it,,,let me tell you you are not alone,i have suffered terrible pain over the years with it also,,i had been on morphine and fentanyl patches for years approx,10yrs before being diagnosed and jee what horrible drugs they are,,they have no place in RA. as they cause more problems to the person,,personally in the begining i was admitted to hospital because dumb doctor failed to tell me about the bowel problems caused by them i was in terrible pain before the emergency doc told me it was them that caused it and the prescribing doc should have advised me to take a laxative with them,,anyway for anyone who is on them will say be careful,all they done was mask things,,,also i think this hit hard and fast with a heavy bombardment of an array of chemicals after diagnosis with RA, is absolute Rubbish,,think about it,,what you are doing is starting an all out war with your own immune system,,bombard anything and if it is cornered it will surely fight back and your immune system is no difffrent and it has more chemicals and pathways in its arsenal than any drug companies toxic chemicals and it certainly has the ability to produce more,,and it can surely fight i can assure anyone of that i have first hand experience in that department,,the immune system is complex as yous know and has to many chemicals at its disposal,,everything works in harmony in the immune system,,well thats the way its supposed to be,,one chemical is out of tune for whatever reason then i believe all of them are affected,,,like the timing in a car one part is out of alignment then all the timing is affected onli the immune system is far more complex it has thousands of timing parts in it,,,,whoever or whatever put us together is one Clever dude,,,if their is no harmony then their is anarchy and dont think drug companies will come up with a cure anytime soon,,its not in their best interests as RA is a multi billion dollar industry and if they did then their cash cow would be gone forever thats why they keep coming up with new rubbish every year, biologics seem to be the flavour of the month and very expensive they are too,,,i personally have had 8 of them and what happend is described above,,,my immune system fought back and boy what a fight it put up,,i had no chance of even coming out even,,,,now my approach is totally diffrent now i have found roadback and AP protocol,,,moderation in everything is the answer and come to terms with your immune system dont bombard it with what them rheumis and professors and the like tell you,,i found this out to my detriment trust me,,,i still have pain but nothing like it used to be and what i went through wont happen again,,,one rheumi told me i had 2yrs to live and if i wanted to do anything i should do it now,,,,,yea well if i hadnt got rid of that Moron that might of been the case,,i am not finished with that clown yet i can assure you,,,,anyway be patient come to terms with your immune system,,even have a conversation with it,,give it what it wants,,its been damaged and needs help too you know. find out about every hormone you have in particular the inflammotory ones and they are lots of them and i still havent even touched the tip of the iceberg,,but hey i will with or without them docs,,,who unless they work constantly with RA patients like dr,brown did then forget it they know nothing,,,well unless of course they have ra,themselves,,not many i know.. ok am goin hope this helps anyone,,even one word might help and yous can disregard the rest if you cant relate. Robert

[Robert]

hI All

just an update ,saw respitory people,they going to do blood pathogens tests to try and find out why i am getting so many lung infections,seems i have UIP in my lungs no doubt RA related, has anyone had this problem with lung infections?,would welcome any feedback,,also regarding DHEA,has anyone had any problems obtaining it from their docs or specialists,seems they got a problem giving it out here,any feedback welcome.Thanks.Robert.

[Robert]

seems in excess of 50% of people with RA have or will go on to develop UIP in the lungs,,the rheumis and professors i have saw in the past have not even mentioned this problem, does anyone also have this problem or do most of you just have the mild form of the disease?, apparently the ra,nodules is the most severe form of r.a.which also affects the lungs. any feedback appreciated. Robert.

[Robert]

hi Lynnie

Could you please send me the list of docs in perth again,,seems i have mislaid it,,i tried Dr.Black but his phone is now disconnected.thanks Lynnie.

Robert

[lynnie_sydney]

hi Lynnie

Could you please send me the list of docs in perth again,,seems i have mislaid it,,i tried Dr.Black but his phone is now disconnected.thanks Lynnie.

Robert

Hi Robert
If you email me lyn@roadback.org, I will forward to your email address.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Robert]

Hi guys think i have an answer as we all suspected,,,infection,,,,,,,,,,anyone been tested for chlamyidia pneumonia,,,,,,,,,,,,,not to be confused with the sexual disease,,,,check this out roscea research/chlamydia pneumonia,,,,,what a smart lil bug this one is,,,,,,,,,,,,,anyway answer to a lot of our questions are well documented there,,i have tested positve for it and certainly explains my continous infectons since 2yrs old,,hope this is useful to yous. Robert.

[Robert]

thanks for list of docs here Lynn . none of them are here or dont practice using Ap anymore….pity hey

[lynnie_sydney]

Yes Robert am not surprised. Others over the last few years have had the same problem W.A. (Australia) seems to be the State with a dearth of AP practitioners and most people there, if they decide to pursue this option, travel to another State. If you’d like a listing of Most Experienced nationally I will email to you. You can email me initially at the address I gave above.

In terms of chlamydia pneumoniae (now called chlamydophila pneumoniae) that is one of the pathogens that has shown up for me (see my signature) and I did have a very bad pneumonia when I was 13 (before this type of pneumonia was isolated/named and an antibiotic that can treat it developed). There is good information at http://www.cpnhelp.org if you haven’t already visited that site. Since a short course of antibiotics will not get rid of this pathogen, it will stay in the body. It’s implicated in a lot of chronic diseases and you’ll find there that it is recommended that people with cpn are likely to do better treatment-wise by seeking out a Lyme Literate doctor.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Robert]

Thanks for that Lynnie,,got to see an immunologist and if he dont do what i tell him hes sacked will find someone else lol…i kid you not,,,had a disagrement with respitory consulatant last week as well when i told hime i was on mino for r.a. ,,,he then piped up they are not anti inflammotories,,i put him in the pic then he said i am not arguing with You,,,,,,if i didnt need him for the gallium scan he would of been sacked as well,,,just shows you the ignorance of these people hey,,,i am having none of any of their rubbish ,,no doctor will ever poison me again and i will never take anymore of their stupid opinions for granted,i know whats wrong with me now i have the data on that lil creepy bug,,,,oh dont worry i will hound it round the galaxy if i have to,,,will burn it at every option available to me ,,,after thoroughly researching antedote too hey,,,,best to know all bout both hey Lynnie,,,lol..

Anyway it shall die regardless too .lol.,,,,,,,,,,,,did you get azthromycin doxy combination when u had it,,,,,,,,,,,,seems to be flavour of the month here hey,,,,,,,,,wild west right enough.

[lynnie_sydney]

did you get azthromycin doxy combination when u had it,

Not quite sure what you mean here Robert.

If you mean did I receive doxy/zith when I had CPn the answer is no. I was very young and CPn had not even been identified then let alone an antibiotic or combination of abx to treat it. I was very ill for a month and they tried the whole arsenal that was available to them then (in the 60’s). The last one (I don’t know what that was) seemed to finally work but a friend in the medical community has recently told me it was more likely that my own immune system finally kicked in. That’s why I still have CPn in my system

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Linda L]

Lynnie,
Does it mean that you cannot kill it? And it will stay in your body for ever?
Linda L.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[lynnie_sydney]

Linda – there is much new thinking that the standard 2 weeks of abx treatment only kills one of the 3 life stages of the bacterium.

There is some good information at this site (though the English was obviously translated so is not perfect) about its 3 life stages and treatment. With short treatment regimes, yes, the contention is that the bacterium stays in the body and can relapse/cause other problems later.

The standard antibiotic therapy for about 2 weeks can get chlamydia in only one of your three life stages. It can be short periods of application of the CP-life forms survive and then later causes the CP relapses.

More: http://chlamydia-pneumoniae.org/

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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