I hope your husband continues to improve.
check out my hotch potch of anti-viral supplements in my regimen section - there some interesting chinese herbs like reishi (ganoderma lucidum) which are anti-viral.
Secondary porphyria induced by bacterial infection can be caused by a lack of ATP in or out of mitochondria which disrupts the heme pathway and trigger an accumlation of highy neurotoxic porphyrins. Apoptosis of infected cells release these porphyrins. In short - my husband became fairly psychotic for a few weeks until we figured it out and got it under control.
All functional improvements previously reported continue to hold and many continue to improve.
Most amazingly my husband had a new MRI this week. Last MRI Sept 2007. First thing out of his MS Neuro's mouth was "Impressive Improvement" and "Best he has seen for my husband".
Two massive lesions still visible but no longer appear to be active. There are zero signs of edema and swelling and several smaller hyperintensities have disappeared. Zero signs of any new lesions.
Plan to post several views from MRI's showing clear improvement on another website soon. Will hyperlink this blog to those pictures.
Here is a list of symptoms/deficits that have improved to varying degrees since Nov 2007 Low.
Ability to Ambulate
Foot and Nail Fungus
Gait/Left Foot Shuffle
Long Term Memory
Sense of Direction
Problem solving skills
Here are symptoms that remain the same so far.
Intermittent Episodes of Rage/Anger
Perservation of Thought
Based on these preliminary results we will press forward with the experimental anti-infective treatment as six rapid 12m2 Novantrone infusions in the first 9 months of 2007 did nothing to touch the disease. Now we are seeing both signs and symptom improvement as well as MRI clinically demonstrable improvement with the high potency anti-infective cocktail.
To all - Here is the promised link to the MRI views from Sept 2007 to March 2008. They are not at all for the squeamish.
I think you're allowed to hope now. Vindication is a wonderful drug.
He has improved to the point that he was finally accepted to a day brain rehab program recently. This is a big step and is taking a tremendous toll physically but so far so good. One of the earliest improvements my husband experienced was improvement in fatigue and stamina. From sleeping roughly 22 out of 24 hours for months, he now sleeps about 10 hours out of 24 per day. Physically he can now easily endure the rehab program - cognitively his brain still fatigues from concentration.
My husband's balance has improved to the point where he can now put his knickers and pants on while standing about 60 % of the time; otherwise, he sits in the chair to do. For perspective his balance and ability to lift his own legs off the floor had degenerated to the point that I had to put his clothes on him up - manually lifting each leg off the floor and sliding his clothes on. He is also now walking up and down steps - even carrying groceries or luggage without holding a rail.
His speech is up from a low of about 10 words to maybe 15% of normal. He had become almost mute and now he is jabbering quiet a bit although much is still incomprehensible to most. His cognitive function and memory also continues to improve in many subtle ways. He is redeveloping some basic human social skills.
Curiously he has developed a lot of swelling in his neck, temple and above the subclavian vein (collar bone and neck intersection). Lymph glands are not swollen and are soft and supple. Extensive labs including CBC and liver function tests are all normal.
Assumptively began manual lymphatic drainage by Vodder. As a result the areas began to reduce as well as he experienced some additional cognitive brain fog clearing. He is getting this treatment now twice per week. If we skip treatments it begins to puff up again in these areas.
In addition to his high powered continous antibiotic protocol, he had one 21 day round of Mepron. This made him very fatigued. Eventually we tried Benadryl which has been shown in some rat studies to be very effective against LPS induced endotoxin. Amazingly the Bendaryl lifted the fatigue. It's a curious world !
We also press on with other measures from the kitchen sink including heavy supplementation, herbals, methylation, SOD, glutathione, good lymph care, guided imagery, accupuncture, cold laser therapy, detox measures, crainosacral therapy, brain hemisphere balancing , etc...
We continue to battle the previously reported secondary co-porphyria daily.
Overall he still has a very long way to go to have true quality of life. Compared with his fall of 2007 low - he's come miles.
MS bites... leave no stone unturned !
His balance, stamina, energy are all very good. He is sleeping a normal 8 hours each night and very rarely needs a nap. We are now working on regaining coordination and overall agility. He walks unassisted with ease, including up and down steps with only minor shuffling of left foot and has regained his use of both arms. His tolerance to be in the high 90degree weather in the south this time of year has been dramatically better than last year.
Cognitively, this has improved too. Speech has been improving quiet a bit and I would say he is up to maybe 30% of normal speech. He's much more conversational now and much more willing to engage with others. He's showing more signs of manners and social skills.
He is engaging in more and more physical activities with the biggest challenge his profound apraxia.
He also seems to need a lot more intellectual and physicial stimulation each day. He sits around fairly bored and jumps at the chance to do anything. Wish I could find a live in rehab person...
He's doing much better with eating and has even ordered his own food on occassion. He has opinions again about what he would like to do and is asking questions about everything. Like he's trying to re-learn life. This weeks question, why do dogs growl?
He has zero new deficits since starting high dose antibiotics and many existing deficits are continuining to improve.
Currently he is still on high dose multi antibiotic cocktail plus numerous other supplements and treatments from the kitchen sink. Antibiotics include now - Rulid, Bactrim DS, Continuous Tindamax, Rifampin and soon adding Tetracycline.
On the down side, he still has massive deficits in his executive function skills. Sequencing of activities and tasks, etc... but even these are better than his lowest low of last year. He does still require a caregiver for overall safety issues, bathing and for administering meds.
Porphyria is becoming more manageable or perhaps I am just becoming more adept at managing it. Lymph still puffs up around neck at times.
He first got "ill" August 5, 2006. Healthy to near death in less than 1 year. It's been an amazing two years.
This infection in his brain - first categorized as glioblastomia multiformae, then Balo's Concentric Sclerosis (horrific form of MS) just about killed him taking away staggering amounts of function in a matter of a few months. I just couldn't believe that the human body would do this to itself. Made no sense to my scientific brain. Something had to cause it.
Aggressive use of antibiotics has so far taken us a long way back in the right direction. We have a very long way yet to go.
MS bites, leave no stone unturned.
I'll asterisk * the ones that have continued to improve
Episodic Memory *
Frustration Tolerance *
Long Term Memory *
Sense of Direction *
Spatial Orientation *
Motor Perservation *
Problem solving skills
Verbal Perservation *
From the smptoms that I previously classified as having "Remained the same so far".
I will also asterisk those that have improved to a degree.
Calendar Comprehension *
Intermittent Episodes of Rage/Anger *
Orientation x3 *
Perservation of Thought
I am so impressed by your fight....I went back to the beginning of your story and checked out the images....I don't think I could have coped! In fact, I know I couldn't have; thank God for your scientific background!
I would like to do many of the things that you are doing, but can only manage the abx and supplements for my husband...I would feel better if he were seeing someone who was literate in the protocol, but since we are not in the UK or the US we have to make do.
How expensive was this genetic testing? Where did you have it done?
Finally, despite my husband not being nearly as bad as your husband, in some ways, he still hasn't learned how to help with the dishes. You're very lucky
My husband's September 2008 MRI, done on the same machine, by the same tech looks the best it has since he became ill. His local non antibiotic MS doctors have never seen anything like this. Healing lesions, no edema, etc... MRI matching the recovery of neurologic deficits including loss of bowel and bladder control, loss of speech, loss of mobility, loss of dexerity, loss of executive function ,etc... he has made noticeable improvements in all of these areas from pre-antibiotic baseline.
As I did before, I will try to post a link to the MRI Views as even the least medically inclined can see the clear improvement in the huge lesions in my husband's brain.
Unfortunately, before my husband was treated with antibiotics he was treated with Novantrone. It was the only thing we were offered besides death. Now he has Acute Myelogenous Leukemia Secondary to Novantrone. He has been in and out of the hospital for the past three months getting loads of chemo. I have been absolutely devestated by this. Just when we were starting to get his/our life back...
Two weeks ago we got a letter from the non antibiotic MS doctor who gave the Novantrone announcing now that there are worse cardiac problems from the Novantrone necessitating a life time of echo's and heart scans and additional worries.
My husband was negative on the standard serology test for lyme disease that probably every MS patient gets as part of the routine workup. I have learned just how poor the accuracy is on these tests and how most miss up to 60% of positive patients.
When I asked repeatedly to 35 different doctors about infection being the cause of the demyelination of my husband's brain - I got condescension, patronization, rolled eyes, the gambit... turns out it was an infection and now he has been mis treated with a bad drug - Novantrone and has a horrible horrible form of leukemia from the Novantrone.
I've never wanted to sue anyone in my life. I do now.
I am not a doctor. If I could figure this out and another doctor could figure this out - why couldn't the first 35?
I wonder how many people are having to undergo the experience of you and your husband?
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