Backsliding...

I am in a quandry.  I am concerned I may be developing a resistance to doxyi and/or azith, is that possible? Or could it just be time for me to mix it up?

 I am again very ill with severe bronchitis and/or cpni pneumoniae symptoms.  I am almost physically at the point I was in March of 2007 when I was first diagnosed (bed ridden, chest pain, deep bronchial coughing, very weak)  This is about the 3rd episode over the last 6 months (2nd within the past 2 months!)

In all honesty my improvements over the past year haven't been significant, other than a reduction in brain fog and a reduction in my FM symptoms.  As each month passes I keep adding to the mix..... I KNOW that is part of this process -- it just becomes more obvious how infected I must be.

It seems I can't kick this bronchitis stuff back down.  I have been diligent with my ABXi, not missing or skipping them, diligent with my D3 (5,000 iu/day) and NACi (1200 mg/day).   (I just haven't been able to pulse since the last of September due  to all this &*^%$# going on.)  I confess I haven't been great with my supplementsi but am better than I used to be and try to get the important ones down me.

I have been having  bowel issues, stomach issues, battling porphyriai because my doc increased my azith to 500 mg daily (on 2 occasions over the last 2 months to try and get rid of this) --   been to the emergency room, had a CT, chest X-ray (and of course, everything is "fine").

 I understand these are most likely issues with the CPN being in these organs  but I can't seem to get the respiratory issues controlled.  It has been coming back when I stop the "additional" abxi.  (One thought is perhaps  the Hydrocortisone is weakening my immunei system even more.)

I have a doctor's appt. on Friday (my monthly visit)  but am not sure what my options to change ABX are.  Iam unable to  find the ABX alternatives for Doxy and Azith and I know it's here somewhere on this site (sigh).  Could someone please direct me to that link?

He gave me Amox-Clav which seems to be helping some but I know this is not part of the protocol or anti-chlamydial, just a temporary to try and help. I did find this link on community acquired pneumoniae treatment (not directed specifically toward CPN).  It at least eased my mind about taking Azith with the Amox-Clav. 

http://www.guideline.gov/summary/summary.aspx?doc_id=9398#s24<

 

JeanneRoz

 

 

Comments

JeanneRoz, I am of the

JeanneRoz, I am of the persuasion currently as you are, that Valcyte in particular and Vatrex and other anti-virals are very big guns that have more potential for colateral damage physically than well applied Stratton/Wheldon CAPi abxi.  The potential for detrimental results from new and powerful drugs is often hugely impactful to folks with concomittant persistent bacterial infectionsi, who are challenged to start with in their physiological functioning.  When you look at costs in terms of side effects and overwhelm to your system vs benefits which have very short term track records at this point, I too would be hesitant to start a course of anti-virals.  

Timaca, a 2+ year course of various monotherapy antibiotic even at bacteriocidal dosages, does not equal a sustained course (of the same duration) of the combination (at least two consistent) bacteriostatic dosage, synergistic acting older safer antibiotics, IMHOi.   

I would ask have you actually done a basic Stratton/Wheldon CAP?  I believe not, from what I recall, as I have followed your comments about antivirals from the start of your conversations here.    You consistently suggest antivirals in your comments and I hope that new folks and folks that are managing their treatments read your suggestions with great caution.    Once you wipe yourself out with such a treatment, if you are one of the unfortunate one to experience an untoward side effect, your recuperation may be quite protracted.   I get the sense that you are on the younger side of many who post actively here.    Perhaps with youth and vitality to start at the course of an illness such insults as Valcyte, natural vigor will bring you back.   Start such a course in your 50's or 60's and natural vigor, hormonal supports and other systemic challenges that develop over the course of normal aging may put the individual in a more precarious postion.   You talk about being very athletic before becoming ill.   Again this is not the case with may here who have been challenged by dis-ease for literally decades.

I am writing this response more for those that get it into their heads that the should try Valcyte to speed up their recovery and in the interim make their here and now unmanagable.   Certainly I cannot disuade you from constantly suggesting it to people of who you have no real knowledge of the complexity of their situations.    Readers, please consider well your choices with antivirals, you may get more distress and even perhaps long term difficulty than you planned for when you started.  

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Jeanneroz, I was told back

Jeanneroz, I was told back in 2006 that Hydrocortisone was not recommended for those who are infected with Lyme.  I do not know the source of that information however.  Apparently it assist growth and replication of bacteria perhaps.  Louise
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jeanneroz~  Have you

jeanneroz~  Have you consider looking into the viral end of things?  Perhaps an antiviral added to your protocol would be of benefit...

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

Timaca~ if you are

Timaca~ if you are referring to Valcyte .... at this point in time, no thank you. IMHOi, I have been ill enough for the past 2 years on the ABXi.   I still have not completed a full pulse... do very little driving, have many days I don't leave the house, have many days I need assistance or transport chair.  I just spent the last 2 weeks pretty much in bed. I am a very frustrated (used to be) Type A personality :) BUT, I do know the evidence and people on this site has proven the Stratton/Wheldon Protocol --- so I am persevering!

I also haven't been convinced  the antiviral meds have helped the majority of those who use them. If you are referring to supplementsi.... that's a possibility, heck what's another one added to the mix Wink.

For me, I believe the CPNi should be erradicated first.  I  believe  I tested positive for EBVi and HHV-6 back in the early 90's never had any problems keeping it in remission with nutraceudicals.  I tested positive again in March of 2007 (along with the CPN) but  do not believe my titers were that high (will have to look them up). 

I am beginning to believe the hydrocortisone may be the culprit of my current problem.

JeanneRoz

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

> I am concerned I may be

> I am concerned I may be developing a resistance to doxyi and/or azith, is that possible?

Yes it is possible. At least with azith. Doxy I'm not sure about. But azith got way less potent for me over time. Eventually it wasn't doing anything so I switched to Roxi and felt much better for it.

> I have been having  bowel issues, stomach issues, battling porphyriai because my doc increased my azith to 500 mg daily

The porphyria is generally a good sign, and shows that the azith is still killing Cpni, albeit at the higher dose. Bowel issues could be Cpn as Jim said, or it could just be yeast/dysbiosis from the extra abxi (I'd guess for the latter).

> I can't seem to get the respiratory issues controlled.  It has been coming back when I stop the "additional" abxi.  (One thought is perhaps  the Hydrocortisone is weakening my immunei< system even more.)

If its coming back when you stop the additional abx you know it is not "die-off" related, but Cpn (growth) related. I definitely think that the hydrocortisone is causing the respiratory issues. Whether its doing this in a "good" way (i.e. coaxing cryptics into replicating form so you can whack them) or a bad way (suppressing the immune system) is not necessarily clear.

In a way its doing both. The h/c is telling the cryptics to replicate. If you are only taking a low dose of abx then the replication signal is stronger than the abx and you get the lung symptoms. However if you up the azithro then the abx are strong enough to kill the extra replicating bacteria, and you get increased die off. 

> It appears the "standard"  doses of doxy  and azith are not enough to keep the respiratory issues at bay. Would it be harmful to take Azith every day and/or 500 mg on M/W/F or  Increase the doxy?  (Realizing of course I will then have to battle the porphyria)  Or, should I consider a different combination of ABX??? 

You could do either. 500mg MWF is certainly not harmful - its the dose I took almost from the begining. 500mg everyday, I'm not sure about.

I would seriously think about the impact the h/c is having on your treatment. Is it helping you or hurting you? I know from my own experience that this is can be a tricky question to answer. I've taken h/c on many many occasions and noted my body reactions (which were almost entirely negative). Even then I kept on going back to it. But in the end I decided that for me it was hurting me much more than it was helping me. I was getting much too much immuno-suppression and no real pay-off.

Hunter: Don't think - experiment

JeanneR, I'm concerned

JeanneR,

I'm concerned about your comments and dose of hydrocortisone.  I haven't used Cortef in years but remember the dosing was a fraction of what Prednisone is and it's considered supplemental and supportive for the adrenals by many CFIDSi practitioners.  It seems you are on a pretty high dose of hydro, if it's the same as Cortef<.   (it appears to be the generic name for cortef)

If it GAVE you a boost initially, what happened since?  Have you now LOST that boost?  Do you feel more fatigued?  

The reason I say is that Prednisone will give you a major boost but as Dr Teitelbaum says about caffeine, (which I use in small amts) it's a "loan shark" to the adrenals.  Pred shuts them down further and then you need to take it just to make up for what you lost.  Cortef isn't supposed to do that but the dosing is typically very small.

If the dose is too high, you could have a situation that it's robbing you of your own energy and immunei system function as it reads in the link above.  

Also, I concur with Jim.  I read a paper once (I'll see if I can find it) about how dexamethasone (another steroid) can potentiate Zithi and I believe it kept the blood levels higher longer too so you might be getting alot more bug kill with the dose you're taking.  

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!  

Reenie,  thank you for

Reenie,  thank you for your concern; but, 20 mg (or 5mg 4x/day) is considered a physiological dose and is not suppose to be shutting down my adrenals.... when you hit 25-30 mg's then that is (my understanding) when the drug may start taking over.  BUT, it is very possible that even at my supportive dose, and with all of the changes going on as I clear out the CPNi.. it may not be "enough" now.  Before I started it, I could barely get out of bed AM, I was having severe orthostatic hypotension as well as other issues.  It has alleviated the orthostatic hypotension issues.  

I have read Dr. Teitlebaum's book and the use of hydrocortisone (generic for Cortef) for CFIDSi.... I believe Dr. Teitlebaum's books suggests and here is an excerpt from a web page:

http://www.immunesupport.com/chronic-fatigue-syndrome-teitelbaum.htm<

"34. Cortef- 5 mg tablets – ½ to 2 ½ tablet(s) at breakfast, ½ to 1 ½ tablets at lunch and 0 to ½ tablets at 4 PM. Use the lowest dose that feels the best; most patients find that 1 to 1 ½ tablets in the morning and ½ to 1 tablet at noon is optimal, Take it with food if it causes an acid stomach. Do not take over 4 tablets a day without discussing the risks with your physician. Take calcium (see #5) if on Cortef, If taken too late in the day, Cortef can keep you up at night. You can double the dose for up to 1 to 3 weeks (to maximum 7 tablets a day), during periods of severe stress (e.g., infectionsi -see or call your doctor for the infection and let him/her know you're raising the dose). If routinely taking over 4 tablets a day, wear a "Med-Alert bracelet" that says "on chronic Cortisol treatment."

 

I guess ultimately, if the hydrocortisone is potentiating the Azith, why am I having relapses of the bronchitis.... should I be interpreting the bronchitis as increased die-off? 

I don't believe I am on too much, as I can physically tell when I need my next dose....heart starts pounding.  I believe as long as I am battling CPN with ABXi, or until I am healthier I may have to stay on it.  I would like to read the paper if you can find it and do appreciate your thoughts and concerns.... it helps to have others' input.

 

 

 

 

 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Jeanne, I caught a

Jeanne, I caught a respiratory bug this Fall that was lingering on despite the abxi. I added 3 garlic pills a day to the mix and it was diminishing within days. Garlic was the only thing that kicked it. I just bought some Allacin (active ingredient of garlic) and I'm trying that. Give it a spin. It may be the magic potion to do the job. Raven

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

Raven, thank you for the

Raven, thank you for the suggestion of garlic.... I added it in November when I first started having the respiratory problems (actually I believe you suggested it to me then, Laughing. )   I stopped it when I started feeling better..... so I'll add it back it ...... can't hurt!

I just seem to keep relapsing..... I do need to find the magic combination Wink

 Jeanneroz

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Perhaps I should rephrase

Perhaps I should rephrase my thoughts....   

1. It appears the "standard"  doses of doxyi and azith are not enough to keep the respiratory issues at bay. Would it be harmful to take Azith every day and/or 500 mg on M/W/F or  Increase the doxy?  (Realizing of course I will then have to battle the porphyriaiOr, should I consider a different combination of ABXi???  

2. I have not been able to work up to a  full pulse yet... my last pulse was the end of Sept and it was for 750 mg/ of Tinii/ day for 3 days.  I had to stop due to extreme pain in the splenic flexure area.  (I realize that if I have a lot of cpni in the gut, well then my immunei system is compromised as 80% of the immune system is located there)

3.  Perhaps when I am able to pulse again more improvements will come... but in the meantime I need to keep going and need to keep the respiratory issues controlled. 

Thanks so much...

 

Jeanneroz

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Reenie, thank you for  for

Reenie, thank you for  for the lists...these I do have bookmarked.  I am questioning what the alternatives to the basic ABXi are.  I'll keep looking.  I believe Biaxin is one. I'll keep searching. :)

Yes I take hydrocortisone daily (20 mg total) and have for about 8 (?) months. Initially it gave me a great boost.  My saliva test showed low cortisol levels. 

 

Jeanneroz

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Jeanne- you've got some

Jeanne- you've got some good suggestions here. Paradoxically, the cortisone could actually be helping to generate more bacterial kill, some research on this, but for sure the hefty azith dose will increase Cpni kill. It has a more bacteriacidal impact at that concentration. One of the big areas of Cpn infectio for me was the intestines, which made the first year of treatment uncomfortable but helped me understand how thoroughly infected I was. The bowel has a lot of endothelial tissue, the favorite of Cpn.

All this makes it understandable that you'd feel worse, although improvement in FM and brainfog are not small matters. I hope you can get the respiratory stuff figured out soon.

 

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, I just found this....

Jim, I just found this.... can you (or someone) explain?  Does this mean hydrocortisone doesn't really affect the cpni?

 

Effect of hydrocortisone succinate on growth of Chlamydia pneumoniae in vitro  link

http://jcm.asm.org/cgi/content/abstract/34/10/2379<

 

I am again having the same issue... 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Jeanne, Daniela may be onto

Jeanne, Daniela may be onto something to look at or at least investigate today. Oh, as we know there are so many organisms and we could not possibly be test for all of them.  Could you raise a sputum sample and maybe it could be planted on Friday after your visit.  He might be encouraged to write your the requestions and then you cough it up and get it to the lab ASAP ( cough in the parking lot?) What you want is a Culture and Sensitivity for the sputum.  They don't do these so much these days (like in the ancient times of 35 - 40 years ago), but in your case with the non-response to what you are on with CAPi it could give some specific results again if you ask he may do it.  He has not thought to do it yet, but you did get the stool culture and that is not so often done these days either so I know you are persuasive and resourceful.  

It is early and I am still here, I will be in and out today and check for all forms of communications from you.

Blessings,  Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
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Jeanne, before I was

Jeanne, before I was diagnosed with Cpni my doc put me on Erythromicin instead of the Azithromicyn. I know a lot of people are not convinced it helps a lot and one has to take it daily. Another pill into the mix... However, it helped me already after a few days and the terrible cough was gone. Forever.

I keep my fingers crossed

 Daniela

Cpni diagnosed. Monotherapy Feb08 - April 08. Then full Wheldon protocol. Feb.09 first steps toward intermittent. NACi, Vit D 2000IU, B complex

Daniela, from my point of

Daniela, from my point of view and reading it is not that Erythromycin does not do a lot, but rather that for long term use on a CAPi there are more problems associated with its use in a long term CAP protocol.  Thanks for sharing your experience.  It could be very useful to Jeanneroz.   Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Sunshine Jeannie,I am sooo

Sunshine Jeannie,

I am sooo sorry you are not feeling well, that really bites the big one!

I feel like you shouldn't mix the abxi up, sounds like you need to get your immunei system built up.   Please Jeannie, you need to take more supps, not less.  I can't say enough about antioxidantsi & boosting your immunity to fight the germs your spouse unknowingly is bringing to the mix (or could it just be the abxi getting to where the CPni is??)  I have had double pneumonia & many many bronchial infectionsi in my illness history.  When I think about what you are going through I wonder if I will revisit the infections you are having as well, in my healing process?.

As silly as it may sound, I have been stressed getting ready for my travel respite trip & marriage issues.  My husband has been hacking big time AGAIN with another bronchial infection- no, he isn't treating yet!  I had a close call here the last few days where my throat started to burning & I just hung on & upped the C & rested.  Sore throat hasn't worsened & is getting better already, but this has put additional strain on my immune system & my time frame to be ready for the trip.

Point is, we walk a fine line you & I & anyone else who is immune compromised.  I am  fastidious about taking my supplementsi & I know that has helped this old girl through some tough times of late. 

Jean, you definitely have improved & even if it was only in your brain, that alone, is a huge blessing.  My FMSi pain improved as well which has been a huge benefit in functioning; but on crappy weather massive changes, the points are all sore on palpitation still-more improvement to come I pray.  My brain isn't out of the woods yet & who knows, maybe it won't get any better.  Only time will tell.   Three years has gone by for me now from when I went to the FFC in Belluvue WA.  I was so very ill then.  It was my docs primary focus for me, based on my blood work results, that we focus on super nourishing my immune system recovery before treating my Lymes disease with abx.  I think that time has served to show she was right in my case at least.  Had I found the CAPi back then, I don't think she would have recommended it for me then.  As you may remember, I started here about the same time as you last year.

Take your time my friend.

you are in my prayers,

ysic

r

 

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Jeanne, So sorry to know!

Jeanne, So sorry to know! Hope you find answers.

 

--Minai

 

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. Housebound with Neuropathy and increased spasticity and weakness since 6/08. USA

JeanneRoz, Sorry to hear

JeanneRoz,

Sorry to hear you're sick.  I suppose there are a number of ways to look at this... 

Maybe you're having way too much die off and porphyriai that goes along with it so maybe you need to do something like Red did and stop the abxi for awhile and just use the supplementsi until you get things under control.  

HERE<'s the chart with the alternate abxi and various protocols.

HERE<'s the supplement chart which might be helpful for your symptoms too.  

Amox-Clav< is actually a penicillin which is anti-chlamydial.  Amoxicillini can be used to eradicate the EBs but we use NACi instead. 

You mention hydrocortisone use... are you currently taking this on a regular basis?

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!