27 Apr 2018
Author
Daisy
Title

Next Step? Which is more important?

Body

Hi All - Need some advice from veterans please... Hubby is now tolerating 200mg QD (at lunch 20 minutes before food) of Doxy beautifully coupled with 600mg of NAC QD coupled with  5000 IU of D plus 1 blue scoop QD of Lauricidin beautifully.  He's on a fair amount of oral prednisone and seems to be making some recovery from latest set back.  Definitely not back to early May new "normal" but at least he's back in the world with me and able to do a few basic things for himself.  If he's having any issues tolerating NAC and Doxy, the oral steriods are more than handling them.  Given the severit

Comments

Daisy, Opinion only here, and I think you are dealing with something bigger than most of us have dealt with... I'd give it more time on the doxy, as once the levels build up, you may see more die-off reaction than you bargained for.

I wouldn't muddy the waters with another abx just yet. If I had a vote, I'd then add in the azith, VERY slowly, rather than more NAC.

Your tenacity and grace amaze me.

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

 Daisy- It seems to me more important to get the dual abx (ie add azith) to prevent developing resistance and cover the ground of getting replication stopped. This actually could be an advantageous time right now because the steroids may help limit inflammatory reactions. Stopping further replication is more critical in a rapidly progressive illness than worrying about the EB's which can be cleaned up later as you go.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

 Reading Mac's post, if your husband hasn't been on full dose doxy more than a couple weeks I'd wait to make sure you aren't facing an eventual "tipping point" build up of effect. Most people get whatever  build up occurs from raising a dose in 2-6 weeks, and you are in uncharted territory with his puzzling illness. So I'll modify my first post and suggest you give a bit more time for the doxy if he's only been ramped up recently.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

Daisy,  You know this, of course, but the prednisone is not only controlling the inflammation being caused by your husband's illness and by the treatments, but by doing so, it's also masking the effects of both.  How long is he expected to continue the prednisone?  That's a valuable but complicating factor.  Is it better to take the next step while he is on the prednisone so that it can control the inflammation associated with that step, or is it better to wait until the prednisone is out of the picture, allowing a more accurate demonstration of his condition and the effects of this or that next step?  Time is of the essence in this case, and MacK is right---your husband and you are confronting something beyond what is usually dealt with here.  It is also something that is so unusual, helpful medical treatment and steering is even more elusive than for the rest of us.  I can't imagine a lonelier spot than you two are in.  Don't be disappointed if nobody gives you an opinion, because this is scary (as you know).  I will PM you tomorrow to start a dialog on this.  In the meantime, call on the Paraclete.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Daisy, I concur with the others. Your husband is exceedingly ill and his situation is quite complicated. I know you want to go fast, but CAP is a long term treatment, on the order of years, and it really can't and shouldn't be hurried. Usually, the sicker someone is, the slower they have to build up the antibiotics.

Jim is right about needing to take the doxy a few weeks before introducing another antibiotic, and I think Joyce is absolutely correct about the likelyhood that the prednisone could be masking any possible inflammatory responses from Cpn dieoff from the antibiotics. I just shudder to think what might happen if you added the azith, and then the prednisone gets withdrawn, and a major inflammatory response that was being masked is suddenly unmasked. Your husband is clearly extremely fragile, and you need to tread very carefully.

Also, by rushing things too much with the CAP, you actually risk having to go even slower than if you proceded at a moderate pace, because if you precipitate some kind of bad reaction, then you'll have to back off of the antibiotics, allow time for recovery from the bad reaction, and then start all over again.

I also agree that when its time to add something else, azith is the thing to add. I think Jim is right about not worrying about the EBs too much, and that they can be cleaned up later, whereas having two bacteriostatics is important to avoid any possible resistance.

Azith has a long half life, so it's particularly important to not get too aggressive with it right away. I think trying 250mg (or even half that) and waiting a couple of days before the next dose would be smart.

basil.

If cats are outlawed, only outlaws will have cats.

I agree with what has been said above... More NAC can wait, Doxy for at least two weeks before slowly adding the Azithromycin. Ella started the Azi one tablet a week, we did not try the divided dose, but that might be a good idea in your case, just to judge reactions. I think I was told though that you should not continue of this divided dose for too long as it may not be viable as an antireplicative abx at that level, but as a means of judging his tolerance of it I think it might be advisable. Although the die off effect did get better, Ella continued to have some bothersome reactions to it for some time and we eventually changed over to Roxithromycin.

At the time I was treading on eggshell, but walking as fast as I could over them so that we could put a stop to the rampant infection that was gripping her CNS.   It was hard, because I was having to witness my daughter going through hard times with only the trust that this treatment was going to make a difference to her in the long term... Such a lot of uncertainty... So scary...

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Daisy, although I was not as sick as your husband, I was very ill.  David started me straight off on full doses of doxycycline, then about three weeks later, as soon as we could get it, full doses of roxithromycin.  I didn't actually take any NAC for about eighteen months and when I eventually tried it, I seemed to have cleared all the EBs by other means.   In your husband's case, time is of the essence, so you might be wise to do as Stratton suggests.  If we had been able to get roxithromycin straight away, I have no doubt that David would have launched me on it straight away...........Sarah  An Itinerary in Light and Shadow   Stratton/Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no exacerbation since starting. EDSS was about 7, now 2.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks to all for shared experience and ideas! 

Hubby has conservatively remained another week on the Doxy 200mg QD, NAC 600mg QD, Vita D, Lauricidin and other recommended supplements regimen.  We have not added the azi yet to be prudent.   

Hubby is still on oral prednisone and will be for the forseeable future.  He has made some more improvement in cognitive function this week although he is still not back to new "normal" by any means.  I am feeling pretty good about giving 1st azi 250mg tonight (Fri) and waiting until next week to make sure it is tolerated before adding a second.  Wish us luck!  We need it!

Infect. Disease doctor ordered some PCR testing (but not CPN or mycoplasma - as he said blood tests for both were not commercially available - if anyone knows differently I'd appreciate the lead!).  ID's recommendation is that if nothing on the blood PCR testing comes back positive to do a biopsy on new lesion and see if they can stain or grow any virus, bacteria, fungus, parasite, etc... out of biopsy.  Neuro agrees and also recommends more Novantrone. 

We are considering their advice.  For now - we are proceeding with steriods and CAP and waiting for PCR testing to be finished.  Then we will make next decision.

Thanks again for everyone's helpful responses!

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Well, it's a relief to hear he's improving. Have all the anti-inflammatories and vitamin C and other anti-porphyria armor at the ready and go cautiously. Tell him we're all pulling for him!

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

Dear Daisy,  Your husband's brain has already endured an invasive procedure.  You know what happened after that.  He has started the CAP now, but, if he has Cpn, there are innumerable infected immune cells ready to rush to the biopsy site.  My question is this:  even if these docs were to order the right lab work following the biopsy and then provide definitive information on what's causing that hurricane, what do you think it might be?  And, how are your considered possibilities of what they would find so different from what you have already considered might be fueling the Balo's?  Do you thiink the biopsy might make a difference in which direction(s) his treatments should take?  Others will fill you in on the availability of the PCR tests, but, since he is now taking the Doxy, Lauricidin, vitamin D, and NAC, he might very well test positive on the ELISA test.  

Daisy, you know so much more about your husband's case and of the possible benefits of the biopsy than someone like me on the outside of the situation, but when you're fearful and exhausted, you are vulnerable to professional assertiveness (whether the pros are right, wrong, or just gung-ho).  Please don't let them rush y'all into this without taking the time to project how the different indications would play out while asking yourself what real benefit could be had from it.  You didn't ask for this advice, but I know there are probably too many people in your circles too scared to voice an opinion.  I'm only suggesting that you allow yourself sufficient time to hash it out logically.  Warm regards,

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce - You are right on the money with your post.    I am asking all the same questions.  You are also right in that I am scared, exhausted and vulnerable to making a bad but well meaning decision so I appreciate the caution! 

The variety of additional pathogens/neurotoxin that could be in my husband's brain are endless.  Quiet mind boggling actually.  The appropriate treatment protocols can also be quiet mind boggling.  Like looking for a needle in a haystack - If it's toxo - this, if it's HHV 6 that, etc...  Besides treating for CPN/mycoplasma, he could need Immunoglobulin, plasma exchange, etc..., IV antifungals, IV antivirals, IV antibiotics with more narrow and powerful therapeutic treatment ranges. 

I keep asking myself, the same thing probably everyone on this site asks - what if it's not CPN?  I am not sure we have the luxury of waiting six months to a year to find out ...

The full viral, bacterial, fungal, parasite staining and culturing should have been done- with should being the operative word - with the 5 live tissue samples taken during crainotomy when they believed it was brain cancer last year.  The tissues were also suppose to be - with suppose to be the operative word - kept frozen for additional testing.  They were accidentally destroyed by big teaching hospital.  All they did was really test the sample for carcinoma.  Some of the stains would have shown some virus/etc... but certainly not "cryptic"/"without cell wall" bugs.  They did not try to culture anything out of the CSF or tissue taken.

The neurosurgeon and neurologists (11 total),  we have seen have all been fairly patronizing towards me, despite my degrees, medical background and the fact that I speak their language regarding my husband's problem being caused by a pathogen/antigen response and come armed with research and facts.  There's actually a fairly well done mathematics paper that was published  in the last year

http://tinyurl.com/2j8kzn

that breaks apart some of the more prevalent  theories about demyelinating plaques and takes the the mathematical proof down to it's either an antigen or oxidative stress.   I can only imagine what DW has felt like among his own peers at his own hospital.

On a funny note, I actually knew Barry Marshall, MD the pathologist who discovered that a gram neg bacteria (H. Pylori) was the primary cause of most peptic ulcers.  He learned it and proved it back in the early 80's.  In 2005, he won the Nobel prize in medicine for his work.  He was at first ostracized by his "peers", then censored and run out of a couple of big hospitals by his "peers" and after 20 years had the last laugh with his Nobel prize.  I remember doing a dog and pony across the US in the early 90's talking to gastro's who literally almost laughed me out of their offices when I approached them about doing clinical trial work on combination therapy with macrolides, flagyl and PPI's to treat the "bacterial cause" of ulcers. 

If we consent to a biopsy and that's a big IF, I told both neuro and Infect Dis. doc  that I wanted to see a full list of what the samples will be stained and cultured to detect, detection methods and labs to be sent.  I really want it sent to the CDC if possible.

So thanks for the post - it's good encouragement to make extra sure the next steps are the right ones!  In the mean time, I don't (and our Rxing FP) don't see much major harm in empiric treatment with Doxy/Azi and Flagyl.

Thanks for caring enough to post some cautionary thoughts!

Daisy

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Dirty, dirty, dog poop!!!!!!!!!!!!!!!!!!!! Dammit!!! 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce? What was that????

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

That's as profane as I ever hope to be in this blessed place.  I ate a yellow bag of my worst indulgence this evening and thought of you.   I PM'd DRFUBAR and was glad that you are in the same neighborhood.  That has nothing to do with dirty, dirty dog poop. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce  - Yellow bags of your worst indulgence?  And you thought of me?

Who's DRFUBAR? 

 

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Daisy,  Sorry, those comments were aimed at MacKintosh.  She and I are both big lovers of peanut M & M's.  DRFUBAR is a new user with SPMS who had an initial difficulty with the PM system. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Poor Daisy! I can only IMAGINE what you were thinking of us!!! Thanks for the laugh-out-loud, Cypriane!

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

Wow - if yellow bags are your worst indulgence - you both qualify for desert sainthood- I was actually just longing for a whole box of HOT Krispy Kreme regular glazed. 

Seriously - put me near a hotel minibar and the yellow bag is the first to go Image removed.

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

And so the Order of the Yellow Bag is born. Welcome! (We'll need a secret handshake, you know. After first wiping hand on pants to remove chocolate residue, of course.)

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

Gooooo Daisy & spouse!!

My prayers are with you.  Hang in there.

Grace & Peace

Ruth

CFIDS/ME, FMS, IBS, EBV, Cpn, Babesia, insomnia (sleep- melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, Doxy 200 mg day pm, Azith 250 mg M/W/Fday

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

my word, Daisy, that is some kind of inept!  Your poor spouse has an invasive tissue sample from his brain& they couldn't save it???? Image removed. Good Grief

The insurer doc recommended I have a liver biopsy & my doc said, why, what for?  He says I have enough on my plate without adding an invasive procedure to the mix.  Your husband is dealing with tonnes of stuff n things.

Steady as you both go. 

Grace & Peace...Ruth

CFIDS/ME, FMS, IBS, EBV, Cpn, Babesia, insomnia (sleep- melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, Doxy 200 mg day pm, Azith 250 mg M/W/Fday

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

D W

Daisy,

I think of you often, and wish you every hope. There are many parallels between us; some knowledge of medicine and a helpless spouse. That was how I was in 2003, but fortunately for me the situation has changed vastly for the better: I hope it will improve for you. Those terrible days can only now be approached with humour. The neurologist didn't know I was medical and talked patronizingly and passed over to Sarah a single film which he said was her MRI. It wasn't. It wasn't even an MRI. It was a stock property he carried with him and showed to all progressive MS patients. When he saw me examining the scratched emulsion he snatched the film out of my hands and gave me a dark look. How do you make humour out of this? Somehow, thinking back, I'm put in mind of Laurel and Hardy, on the train in their under-rated short film 'Berth Marks'. It has a Kafkaesque quality. Laurel is holding a 'cello with a broken neck and a music case from which he has lost all the sheet music. Soon they will lose their clothes, their night's sleep and even the wreck of the 'cello.

Conductor - looking at the tickets] Pottsville? What are you fellas gonna do in Pottsville?

Hardy - impressively, fingertips touching lapels] We're a big-time vaudeville act.

Conductor, after studying them intently, and speaking without any trace of sarcasm] Well, I'll bet you're good.

[Laurel and Hardy stare at each other open-mouthed.]

 

Thanks for linking to that paper by Khonsari and Calvez. I've printed it out and will read it thoroughly. On another topic: was this the Dr Fubar who studied under Prof Snafu?

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. BP 13 July a.m. 105/75. No medication.]

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

David - I am sure DrFubar thinks so. But we're going to help him turn that around...

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

 David- Perhaps, like Sarah's previous neurologist, Daisy could see if there are some stock tissue samples around the lab they can test! Good God, he was carrying it around as a prop! So the vaudeville metaphor is quite accurate. David, did you have that class in your medical training: Clinical Vaudeville Skills-- theory and practice?

Really, Daisy, it's another appalling story of missed opportunities, but I'm so glad your husband has someone of your expertise to drive this thing forward. Not many families have the research skills to know where to push and when they are, getting often well intended, but narrow responses from medical caregivers. I'm glad you are getting some support here, as it's good to have some folks at your back in such trying times.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)