Everything including the Kitchen Sink

Tell us what you are using to treat your MS-- and how you are doing.

Postby daisy » Fri Jun 08, 2007 8:54 am

Sarah,

Thanks for the care for the caretaker ! I find that when anyone asks how I am handling all of this - alone - with no help from dear hubby's family - that I get teary-eyed. A sure sign I need to take better care of myself. On that note - I am calling NOW to book a massage for me!

Daisy
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Familiar territory

Postby mormiles » Fri Jun 08, 2007 9:04 pm

Hi Daisy, My name on thisisms is "mormiles," but you already know me as cypriane (Joyce) on CPn Help.org. You have already read some of my blogs over there, but there are a couple here that might interest you, since our viewpoints are so closely aligned. When you have time, check out the familiar territory in these two threads:

http://www.thisisms.com/ftopict-3055-comprehensive.html+treatment
http://www.thisisms.com/ftopict-2985-comprehensive.html+treatment

Some of what you will see is already known to you, but some will be fresth to you. By the way, since one of your husband's significant defense mechanisms is cyst formation, the IGF-1 shortage factor that affects so many MSers might not fit your guy's profile, and trying to boost it might be a misstep. That's speculation on my part, but I think it bears checking out. With your background, you probably have already thought of this, but it's better said than unsaid. Take care, Joyce
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Postby SarahLonglands » Sat Jun 09, 2007 7:29 am

Daisy, Joyce mentioned over on CPn Help that you might try to see either Sriram or Stratton at Vanderbilt. I don't know how travel would be for you, or in what part of Georgia you live, but that would be a very good idea. Maybe your local team would be willing to work with them? If so, that would take away the need for travel.

In the meantime, I hope you got that massage booked for yourself!

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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So little on the internet about Balo's

Postby mormiles » Sat Jun 09, 2007 8:34 pm

Daisy, I did a little googling to find out about Balo's. It didn't take long to surmise that the imaging aspect of Balo's is very interesting to the medical community. MRI's and case studies without much enlightenment were pretty much the fare. I did find something though that made me wonder if what the surgeon found in your husband's lesions was the same or similar to what was described in this article summary:

http://www.springerlink.com/content/h503mkvv65q836w6/

"Demyelination in canine distemper encephalomyelitis: An ultrastructural analysis
Journal Journal of Neurocytology
Publisher Springer Netherlands
ISSN 0300-4864 (Print) 1573-7381 (Online)
Issue Volume 16, Number 6 / December, 1987
DOI 10.1007/BF01611991
Pages 871-881
SpringerLink Date Monday, May 16, 2005

Brian A. Sumummers1 and Max J. G. Appel2

(1) Department of Pathology, New York State College of Veterinary Medicine, Cornell University, 14853 Ithaca, NY, USA
(2) Department of Microbiology (James A. Baker Institute), New York State College of Veterinary Medicine, Cornell University, 14853 Ithaca, NY, USA

Received: 29 April 1987 Revised: 17 July 1987 Accepted: 27 July 1987

Summary A morphological study of selected white matter lesions was carried out in three dogs with canine distemper encephalomyelitis. Two dogs had experimental infections while the third was a spontaneous case. Two stages were identified in the process of demyelination. The earliest evidence of myelin injury was a ballooning change in myelin sheaths involving single or multiple axons. This was followed by a progressive stripping of compact sheaths by the cytoplasmic fingers of phagocytic cells which infiltrated and removed myelin lamellae. Some axonal necrosis also accompanied these changes. Where demyelination occurred, canine distemper viral nucleocapsids were found in astrocytes, macrophages, ependymal cells and infiltrating lymphocytes. In contrast, oligodendrocytes were conspicuous by their apparent lack of infection. Thus it seems that myelin loss cannot be ascribed to oligodendrocyte infection. Perturbed astrocyte function following canine distemper viral infection may cause oedema of myelin sheaths, leading to ballooning and primary demyelination. Cells which phagocytosed myelin were mainly identified as microglial cells with lesser involvement by astrocytes. Rarely, oligodendrocytes also acted as macrophages. Myelin debris was engulfed in bulk or as small droplets into coated pits. Remyelination was present in established plaques although not in great abundance, perhaps due to the diminished oligodendrocyte numbers and a relative increase in immature forms of these cells. These observations are compared to similar changes observed in other demyelinating diseases of animals and man."
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Postby daisy » Mon Jun 11, 2007 5:32 pm

Joyce - You are as my grandmother says "Good People"!
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Postby dignan » Fri Jun 29, 2007 3:40 pm

Daisy,

You sound like you are an expert on Balo's, but I just stumbled on this abstract and thought it wouldn't hurt to post it on the outside chance that you hadn't seen it before:



Baló's concentric sclerosis associated with primary human herpesvirus 6 infection.

J Neurol Neurosurg Psychiatry. 2005 Dec;76(12):1723-5.
Pohl D, Rostasy K, Krone B, Hanefeld F.
Department of Paediatrics and Paediatric Neurology, Georg August University Goettingen, Robert-Koch-Str. 40, 37075 Goettingen, Germany. dpohl@med.uni-goettingen.de

BACKGROUND: Baló's concentric sclerosis (BCS) is a demyelinating disorder believed to be a rare variant of multiple sclerosis (MS). Human herpesvirus 6 (HHV-6) is a highly neurotropic virus causing severe central nervous system (CNS) infections predominantly following reactivation of latent HHV-6 in immunocompromised individuals. Primary infection with HHV-6 usually occurs in early childhood manifesting as exanthema subitum. The clinical spectrum of primary infection in adolescents or adults has not yet been evaluated.

Case report: A previously healthy 13 year old girl developed acute hemianopsia and anomia 5 days after an episode of fever and malaise of unknown origin. Cerebral MRI revealed three white matter lesions, one with ring-like contrast enhancement. Lumbar puncture showed mononuclear pleocytosis of 30 cells/microl, oligoclonal IgG, and a normal protein level. Follow up cerebral MRI scans revealed lamellar concentric hemispheric lesions characteristic of BCS. The first neurological symptoms of the patient coincided with primary HHV-6 CNS infection, diagnosed by a positive PCR test of the CSF together with seroconversion. Response to antiviral and corticosteroid treatment was only temporary, but immunoglobulin treatment has so far been followed by clinical stability for 30 months.

CONCLUSIONS: To our knowledge, this is the first report both of an association between HHV-6 and BCS and of immunoglobulin treatment of BCS. A late primary infection with HHV-6 might be associated with BCS. Further studies in patients with this rare disease are needed to confirm this association and to evaluate the efficacy of antiviral and immunoglobulin treatment.

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Postby daisy » Tue Jul 03, 2007 8:17 am

Dignan - Thanks for the post! Good reminder to remember HHV6.
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Postby daisy » Mon Aug 06, 2007 2:08 pm

Time for an update.

Issues observed in early June were NOT from treatment but were unfortunately a new large and highly active Balo's lesion in my husband's front right cortex. Since last post, husband's condition deteriorated rapidly. Lost executive function, memory, physical function, huge increases in all neurological deficits.

Huge rounds of IV Solumedrol and more Novantrone infused. Husband has stablized and is slowly making progress in the right direction.

In the meantime, we have persisted with the antibiotic therapy and he is now tolerating 200mg Doxy, 1800 mg NAC, 250mg AZI MWF, all other recommended CAP supplements plus a few others.

Since chelation alone can lower WBC's, my husband had not been under going any chelation while receiving the Novantrone which really wipes them out.

He will get one more Novantrone infusion at the beginning of Sept and then a couple of weeks later another MRI. Then more - decisions on what to try next.
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Postby daisy » Sat Jan 05, 2008 8:12 pm

Time for an update.

The good news is that my husband is still alive and most recently he seems to be turning a corner in the right direction.

The past 5 months since my last update have been - in a word - horrible.

Depite 3 more infusions of Novantrone, IV and oral steriods and antibiotics he continued since my last post here to deteriorate - that is until - late November.

Tons of new deficits and issues cropping up monthly. Deteriorated to the point of requiring assistance with every task of daily living and 24 hour supervision. Lost control of bowel and bladder , lost most of ability to self ambulate, etc...

Since last post, engaged tons of new doctors and underwent lots of testing - including genetic profiling. As a result of genetic testing began supplementation for methylation, glutathione and other detox pathways.

The only new lab that was "positive" was an off the scale high titer for mycoplasma. Interestingly, while my husband tested negative for lyme on Western Blot based on CDC criteria , he did test positive for 4 lyme bands including 31 and 39.

As a result of testing positive for bands 31 and 39, he was given ramped up empiric antibiotic therapy. He was switched from Doxy 100mg bid, Azithromycin 250mg M,W,F with pulses of Flagyl to Rifampin 600mg qd, Rulild 300mg bid, Bactrim DS bid, Minocycline 100mg bid and Diflucan 100mg bid.

He began the antibiotic cocktail switch at the end of October and subsequently began to further deteriorate rapidly. It was unknown whether this was a herxheimer reaction to the antibiotics or disease progression. By mid November he reached a new low. I began to accept that I might not be able to care for him at home any longer even with several outside caregivers.

His cognitive function was similar to a severe Alzheimer patient. Very confused, weak, no coordination, unable to do pretty much anything for himself except get food to mouth with large spoon.

On November 22nd, he began to mentally clear a little. Since that date week over week, I have observed some meaningful improvement. He is becoming mentally clear the majority of the time, can do 75% of the job dressing himself, has regained bowel and bladder control, eats with a fork and knife with zero assistance, severe polydypsia completely resolved, profound hyperaccussis 60% to 70% improved, is starting to do some small "chores" around the house, aphasia improving - becoming more verbal, interested in life again, taking daily walks, riding a trike with assitance, able to go up and down stairs if handrail available, etc...

All of improvement seems to come and go - sometimes in a day - but week over week - he's clearly and dramatically improved.

He still has severe neuro deficits including apraxia, aphasia, anomia, agraphia, dyslexia - ie he can't read, write, understand math, has no awareness of time, place, calendar, not very verbally fluent, etc... coordination off, etc...

I am cautiously optimistic we are on to something.
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Postby gibbledygook » Sun Jan 06, 2008 10:57 am

What fantastic news. Fingers crossed this keeps going. Best of luck and science!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby SarahLonglands » Sun Jan 06, 2008 11:12 am

Oh, Daisy, I must say I was worried when I saw the amounts of everything you were throwing at your husband, but something seems to be happening! I am so pleased for you.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby cheerleader » Tue Jan 08, 2008 7:53 pm

Daisy-
My heart goes out to you- as a fellow caregiver, I cannot imagine how difficult this past year has been for you. You are an inspiration for all of us.

My husband was dx MS last March after a bout of numbness, tingling and severe spasms. He has over 20 lesions on brain and spine, and has been faring well on Copaxone and many supplements.

We had him tested by Igenex lab for Lyme this fall (I wanted to follow up on an inconclusive LP result), and he is positive for Lyme on bands 39 and 41. We're doing further testing before beginning IV antibiotics. Our Lyme literate doctor recommends Rocephin IV for 3 months. We are in southern California, and this is the neuroborrealis protocol out here.

From what I have learned, steroids can be terribly detrimental for chronic Lyme patients, which might explain some of your husband's downturn. It seems like the antibiotics are working.

I wish you both continued hope and health-
best,
AC
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Postby daisy » Thu Feb 14, 2008 10:26 am

Improvements continue.

My husband is now walking 1 to 3 miles per day, riding a trike a minimum of 3 miles per day to as much as 14 miles a day. Has learned this past weekend to ride a regular two wheel bike again. His balance and strength seem to be increasing week over week. For perspective, in November he was being lifted in and out of chairs, could walk at best 100 feet and couldn't climb stairs without serious assistance. He is climbing steps - sometimes without holding handrail.

Able to get in and out of jacuzzi on his own. Can throw softball and use softbal glove to catch again (maybe 75% to 80% of pre-illness ability). Went sea-kayaking and was able to paddle some. Is learning to drive again... etc...

Eating abilities such as coordination and neatness also continue to improve. Bowel and bladder control as definined by ability to wait for restroom, etc... continues to improve.

Able to do some small chores around the house - taking out trash, helping with dishes, etc...

Cognitive function also continues to improve. Able to brush own teeth and dress. Figuring out how to open and use things again.

Endurance and energy greatly improved. Maybe 75% of pre-illness (he was energizer bunny before Balo's).

Reading a little, still can't write and great difficulty speaking. No awareness of calendar, time/date/place, no understanding of numbers or math, etc... Some difficulty understanding others speech but much better in this aspect of his profound aphasia.

Still a very long way to go to get a decent life back but since last post my husband continues to improve.
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Postby gibbledygook » Fri Feb 15, 2008 5:45 am

How amazing and wonderful! Can you tell me more about your methylation and glutathione treatments? My SOD experience has rather backfired so am thinking that glutathione which is anti-viral might be a better one to ramp up on.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby daisy » Sat Feb 16, 2008 11:47 am

Alex -
I have actually been thinking recently about your SOD posts and experiments. My best guess is that you might have ramped up on too much SOD too quickly. For my husband he initially took 2 grams of GliSODin per day but that seemed too much as he had some negative sequelae. We backed it down to 1 gram of GliSODin per day given in single dose in AM before breakfast.

A big part of the reason for my husband taking SOD supplements is that some genetic testing done on him showed that he was genetically a poor methylator, poor producer of SOD and completely missing two key glutathione production genes.

So you know about the SOD. For methylation support my husband takes 750 of TMG (Trimethylglycine) twice daily on empty stomach to boost methylation abilities. For Glutathione - he takes NAC, Selenium and Vitamin E to produce some naturally through the normal production cycle as well as he supplements with some pharmacy compounded transdermal glutathione cream.

Also forgot to mention - he also takes a prescription vitamin - Metanx which is pre-methylated folate and B vitamins.

The key I have found with this is to avoid going for the quick hit/fix. Supplements usually work best when given in a little bit lower doses that allow the body to slowly normalize /reach homeostasis over time. I learned this the hard way relative to coaxing my own autoimmune disease - rheumatoid arthritis into long term remission.

Best of luck!
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