A Day to Remember, But I'd Rather Forget

Submitted by cypriane on Tue, 2008-04-15 12:47

Sunday afternoon we visited my mother, and Steve slept while she and I chatted.  Then we went to Mass and he became very emotional on receiving the Eucharist.  I've seen intense emotion affect his function before, but this was worse, and we had to stop a few times on our way to the car so he could regain control and strength in his right leg.  He told me his throat was sore again and he began coughing/strangling frequently.  Monday morning the respiratory symptoms continued, but he was functioning just fine in his usual workday routine.  He made two driving trips to see customers that morning.  In the middle of the afternoon, I received a call from one of Steve's co-workers who asked me to come get him, because he was in a bad way.

And yes, he was in a bad way.  He couldn't walk at all, he had wet himself, his vision had gone very blurry, and he was very foggy.  Two of his co-workers had to carry him out of his workplace and put him in our car.  I soon realized that he was running a fever with the 3rd flare in the past two months of an untypable flu.  The 2 previous bouts of this were flimsy in comparison.  This time it happened within a course of Tamiflu which is supposed to be effective against this flu.  Steve said the temperature rise came on very quickly, he fell in the floor at work in a low traffic area, couldn't get up, and a co-worker eventually found him and helped him to his office chair.  Anyway, he was and still is very embarrassed.  I've seen him in this state before in past years during bouts of flu, but nobody else has.  It's unspoken between us, but we are both worried about the effect this could have on his job security.

It was rather unnerving getting him from the car, into the house, and into bed---we did it with rolling office chairs.  Two years ago we didn't have a driveway or a sidewalk, and I had to carry him on my back.  It was even scarier when his fever continued to rise despite the Motrin he had taken before we left his workplace.  I packed him down with ice and bags of frozen vegetables, and the fever finally began to drop after about an hour of that.  After a while, he very shakily was able to walk with my help to the bathroom.  He's home today, still using Motrin to keep the fever down, resting, sleeping, and probably wishing I would stop calling him. 

This is probably "a walk down memory lane" for those of you who are further along in your MS progression, and I'm certain you can recall how disturbing it was at the time.  I took a whopping dose of melatonin last night and slept more than usual, but today I feel like I haven't slept at all.  Thanks for "listening."

Joyce, here I sit, unable to offer anything but hope and well-wishes. Yes, I know what it is to have things happen in public. I hope this passes and life goes more smoothly very soon.

 

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 50 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

That really doesn't sound like the influenza virus. The "untypable" business, the ineffectiveness of Tamiflu, and the repeated flares (which are very uncharacteristic of flu) all weigh against it.

In my experience, getting emotional is a result of underlying disturbances, rather than their cause.

Rica,  Thanks.  For Steve, the embarrassment factor probably outweighs every other aspect of what happened.

Norman,  I think Azithromycin makes Steve more prone to emotionality.  I've seen Steve go wonky several times when he has gotten very emotional.  An "untypable flu" is Steve's doctor's best guess at what has been behind his respiratory infections these past few months.  Some of his other patients have had similar symptoms since the first of the year, and Tamiflu has been effective for them.  That's all we've got to blame it on for now. 

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~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. 

Hi Joyce. I also wish him hope and eventual recovery. Stay strong. Although Im no where near that sick now, I have been pretty sick in the past and yes it is sort of difficult to reflect on. I have this one memory after being exposed to oil paint toxins and getting very sick -I ended up floored for months. I was unable to do anything but breathe for weeks. It wasnt that my muscles were paralysed, I just didint have the physical strength to walk or even sit up, maybe due to porpheria, Im not too sure, or maybe the ms itself I dont really know. I recal though, at one point being given a bedpan while in hospital on IV and spilling it in my bed. I layed in urine for hrs and hrs, nobody cared, they just left me there crying unable to move or clean myself. After that I crawled around for another 6 weeks and then just gradulally recovered. I guess my point is that, even where there seems to be iminent doom there is always hope and chance of recovery and sometimes its just a matter of discovering unknown ambigious triggers and avoiding and changing them. I know it must be so hard for you both, but stay strong and just never give up. Again I wish you both strength.

 

 

 

 

 

&nbs

You carried your husband on your back? Wow. (note to self: thats the kind of wife I want).

I have to agree with Norman - thats one strange flu.

I don't know if its normal for your husband to get emotional at that type of event. I've had some intense emotional experiences of my own recently (e.g. waking up crying). I know in my case they are drug/recovery induced. INH in particular makes me weepy (though only when asleep strangely - possibly due to melatonin activation). 

CFS. Started CAP 03-07. Currently: Roxi 600mg + INH 600mg + Tini 1000mg. 10 Pulses done. Sauna every other day. D 7200IU

Hunter: Don't think - experiment

clammed_up,  Thanks for the well-wishing.  I sincerely hope that you never have to experience anything like what you described again.

garcia,  Yes,  I did carry him on my back when he had the flu a couple of years ago.  We built our home in the country a few years ago and only had a gravel driveway and stepping stones at that time.  After that experience, we knew we had to have some paving done.  Anyway, I wouldn't recommend what I did.  I have disc degeneration and osteopenia of the spine and in one hip, and I didn't know it at the time.  It seemed like the only option when it happened. 

I've just spoken with the head nurse at Steve's doctor's office who extended the doctor's message that what is happening to Steve is fallout from the Tamiflu working.  Hmmmmm.  The answer may be right, but I don't like it.

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~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. 

Oh Joyce! For heaven's sake you are a strong one (and now I mean that literally too!). Did Steve change or increase abx somewhat recently? I thought I remembered an increase in doxy. Could this be a classic herxheimer....fever, flu-like, etc? Just a thought and hoping for better days. Lexy --------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MS with CAP
--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MS with CAP

Hi Lexy,  Your memory is good.  He switched from 100mg doxy twice a day to three times a day on about February 21.  He went through a period of noticeably increased die-off reactions for about 3 weeks after that, but they were only moderate.  I think Dr. X is probably right about this current problem being due to the Tamiflu doing its job...it's the pits though.  I came home from work early; he 's red in the face and feels hot again.  I just stuck a thermometer in his mouth, and I'm wondering if perhaps we should let the fever run its course (with an upper limit-stop like 100*). 

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~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, Steve is very lucky to have you --- physically strong paired with TLC! I don't know what ails Steve, but the episode does remind me of my intro to this site: I had been taking minocyline for 6 weeks when I suddenly got a headache and when I tried to walk across the hallway to my bedroom, my legs couldn't hold me. My husband had to get me up and help me into bed. The next day, while he was at work, I was so weak I couldn't even turn over in bed and although there were workmen in the house I was too weak to call for help. I probably had a fever of 105. This continued with the fever going up and down for 5 days and then i developed a persistent cough and hovered at 100 degrees for 4 months. It was diagnosed as bronchitis and i was put on antibiotics. I found this site, had my blood tested and found that it was in fact cpn. So, in retrospect, i would say that my extreme reaction was a herxheimer or at least had something to do with the minocycline riling up latent cpn so they could do the respiratory thing they are so good at. It was certainly not the flu. However, i did not, like Steve, get emotional. On the contrary, I simply assumed on that first day that I was dying and I was so tired I didn't care. But, hey, it was just a little minocycline. Flagyl will get me emotional.

PPMS-misdiagnosed 2001-diagnosed 2006. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAP 3/2/07 - 200 doxy; azith MWF. 4 pulses. Rockville,Md. Loo

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Arttile,  That's awful!  By the good graces of God and the CAP, may you never know that type of despair and suffering again.  Before the mental picture of me carrying Steve on my back during a previous flu looms large in any other minds, I should say that it was a matter of sitting on him, wrapping his arms around my neck, and then walking bent over while his feet drug the ground for only about 10 to 12' beyond the garage where I had rolled him on an office chair.  It wouldn't have been a pretty thing to watch.  There was no "hoisting" nor long distances involved, but those last several feet to the car were very tough.

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~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 a rough one for you both. I'm so sorry. I was reminded reading the conjecture that the Tamiflu is generating the "fallout" that in the Valcyte in CFIDS studies by Montoya, patients went through a significant "die-off" period as the viral kill ramped up. In someone with MS, where viral henchmen, as David Wheldon puts it, may be up to no good in neural tissue, the Tamiflu could be hitting viruses in unexpected places. I hope it abates quickly and can be one of those unfortunate incidents shortly.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 250mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim,  As always, you offer up thought provoking commentary.  I must say, you have put a hopeful and positive spin on this.  Dr. X is a no dunce, and for now, I'm eating what he's serving up. 

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~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. 

So sorry to hear - when I have the flu it is a nightmare. I just stay put for a few days. I agree with Jim. I hope it passes quickly. Tell work its a virus that obviously knocked him out. On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

 Joyce - Please know that I am thinking of you guys.  I wish I could think of something wonderful to say or something comforting but all I can seem to offer is commiseration with your pain.  Paraclete.

Hopefully Dr. X is right and this will be a valley that quickly turns in to a positive peak!

Daisy - Husband on CAP 5/07.   Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Mino

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. 

I'm with Wiggy; tell work that it's an untyped flu and he's under a doctor's care and his fever is spiking at whatever... We all know people who were knocked nuts by a flu or pneumonia at some point and all have some mortifying story to tell. (Work doesn't need to know any more than that, so let it be.) Sure sounds like one of those bad bumps in the road. After what Daisy's husband went through, I'd be looking at her remedies. I agree with Jim and think it's big-time die-off.

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

Joyce & Steve,

I am very sorry to hear about this.  I had a horrific viral influenza in 1987 & only knew 2 others that had it.  One has since died from Parkinsons & well, I am where I am.  So far, the other seems Ok.  I had a fever & was ooozing mucous & could not move.  My ex-husband had to stay home from work to take care of me.  I just thought I was going to die.  I am very familiar with the incontinence involved from bladder & bowels being that sick.

I am not familiar with Tamiflu?  My uneducated knee jerk response would be that I would stop taking it if it kicked me in the head like poor Steve.  Maybe get Steve a doctor note as suggested above & leave it at that, cover your bases, so to speak.  One cannot be fired for illness where I am from, that is not to say an employer can't try it.  When I was ill in my 20's with mono, EBV & Hep A, I had just prior received a promotion.  When I was back at work a month later, I was hauled out on the mat for "not performing" at my job description.  I went full out attack mode, along with my doc who wrote a lovely letter address to my employer about my illness.  They backed away from their claims.  My record in tact.

Joyce, you & other caregivers here, are truly amazing.  Love is a verb & you all display the very essence of the word in your actions.  You all have moxy!

Be well,

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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<

I've just had a nasty bout of flu, aggravated I think by creeping porphyria... Porphyria not bad enough to make me do much more about it than I usually do, but I remember feeling more gut pain and slight nausea than I had lately.   But both the virus and the porphyria together made me pretty ill, high temperature, slightly delirious, doubling up and moaning with the pain, unable to eat, unable to get out of bed but for the necessary business and when I did I was very wobbly and giddy, (also wore incontinence pads).   I don't have MS just imagine what that would do to someone who has....

I'm presuming that you have all the anti porphyria measures in place, and yes I would let the temperature run its course, it is afterall one of the body's defences against invading organisms...

We have untold resourcefulness, strength and courage available to us when we need them and you have demonstrated that over and over again in the months since we have know you.   This is just another hurdle for you.   It will pass and you will be able to add another experience to the wisdom that you already possess.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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

Thanks everyone for the moral support, prayers, and advice.  I went ahead and gave Steves's fever a chance to run its course with no anti-inflammatory counteraction.  It wasn't pretty, and in the course of events over the past few days, there have been several falls in the house, alot of escaped urine, and many hours of lost sleep (mine).  In the wee hours this morning his fever peaked at 101.4*F and stayed there for a few.  Since then it has slowly dropped and is finally back in his "normal" range of 97.3*F.  He's back to his usual level of ambulation, actually conversing with me again, and he even seems comparatively perkier.  At this rate, he could be ready to return to work on Monday.  We hope to look back on this experience as a healing crisis of a sort.

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~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. 

Good news, glad it's over.   I think I saw my battle with the flu as a healing crisis.  

A number of my symptoms were similar to those I have when doing a pulse, which gave me hope that my immune system was actually doing a more efficient job than it has for a long time. 

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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

Joyce, I feel for your husband. I had the flu 3 weeks ago. I was doing quite well at the time, even seeing some physical improvements. Well during my fever I could not get from a wheelchair into my bed. Normally in the house I use one cane and wall walk. My husband had to help me into the bathroom every hour during my fever. It was soo scary. It has been 3 weeks since, I still am going up and down with energy. (drastically). I had some very down times during the down phases. Please tell your husband to try not to be to hard on himself while recovering from this. My PA friend told me that this year has been the worst year for the flu since the 17 years she has been in practice. I just could not believe how badly my physical condition was during the fever. If my fever did not break, I wanted to be hospitalized so my husband would not have to carry me to the bathroom every hour. 2 Tylenol brought it down within a 1/2 hour and I was able to get myself to the bathroom. (bear in mind it was not a pretty site) I recently have been having glimpses of my "normal" self for about an hour at a time within the last 4 days. Good luck to you guys and come back for more support. Kc dx ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On doxy 200mg/day azith 250 mwf and NAC 700mg. ldn 2.0mg.
dx ms 1996. started cap 10/05. Started with tini pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On mino 100mg/day biaxin 1000mg day and NAC 600mg. ldn 2.0mg.