In August 2006, with no previous signs, he awoke one morning to find he was experiencing anomia (word finding problems). My husband was 39, extremely atheletic and virtually never sick a day in his like. Long story short, visit to Family doctor, referral to Neuro, seizure necessitating hospitalization while waiting for neuro ordered MRI, MRI which showed golf size singular solid mass in his left temporal lobe (speech center).
Told it was brain cancer and likely the worst type - glioblastoma multiformae (GBM). Immediately sought multiple other opinions from major brain cancer centers. Twelve different neurosurgeons at three major centers looked at MRI disk and said - yes brain cancer. Massive additional loss of speech and reading ability through out this two week period. Hubby also developed all kinds of wierd, foul smelling body odors during this time that were not relieved with showering.
Decided on neurosurgeon to attempt to resect the "brain tumor" via a craniotomy. Neurosurgeon found during early Sept 2006 crainotomy when he pierced the "mass" that "mass" was not in fact solid but was full of a "cobweb" like material that had formed a "honeycomb" of small cysts which he aspirated out of the main sac. Intraoperative pathology showed only a preponderance of foamy macrophages and neutrophils. No cancer. I nearly fainted with joy when the neurosurgeon came out of surgery some 8 hours later to tell me this. No matter how devastating MS is glioblastoma is wicked wicked wicked. Around 96% mortality at 2 years.
The final path report came back as negative for brain cancer but positive for demyelination. We were referred to one of the biggest MS (most published) specialists in US. He tested my husband via a 3 hour neuro exam for MS and my husband other than the aphasia (speech issues) showed no signs of MS. He also tested my husband for B12 deficiency, lyme's and syphillis as well as a bevy of other blood work. The only thing that has consistently kept coming back as out of range was my husbands red blood cells (RBC's) are consistently low, his blood pressure and body temp are both also consistently low. Famous MS doc said he didn't think my husband had MS but only time would tell. He recommended a 5 day course of IV solumedrol just to see what effect it would have. It made my husband sleep nearly 23 hours a day - wierd hun?
Recovery from crainotomy was difficult but fairly uneventful. My husband's aphasia continued to be as bad as ever with no improvement. About 8 weeks post crainotomy, in early November 2006, he had another major gran mal tonic clonic seizure during the middle of the night and had to spend 5 days in the hospital because he was so post ictal (out of it).
Local Neuro following us seemed unconcerned and put hubby back on seizure meds. Post surgical MRI done at this time and neuro told me it was fine. Still showed mass in head but nothing changed. I later found out when I went to get the MRI report that it showed the mass had slightly enlarged and had re-filled with large well formed cysts. Both the neuro and neuro radiologist missed this important clue as to what was really wrong with my husband.
Over the course of November hubby lost ability to read, more speech and ability to write and started having wierd cramps in calf and arm. Neuro kept trying to tell me he was fine just adjusting to seizure meds. He and his office wouldn't even return my phone calls about the alarming changes in my husband. I fired him and hired new neuro team.
By the time got in to new neuro team on Dec 6th they sent us directly across street to major hospital through ER. Most of month of December hospitalization ensued as while in the ER my husband collapsed and lost his ability to walk, his cognitive function, use of arms, everything - complete hemiparesis of right side. 24 hour EEG monitoring, blood testing and then MRI on day 3 which showed golf ball lesion was now grapefruit size and very irregular shaped over a significant portion of the left hemisphere of my husband's brain. Lumbar puncture (no bands), CAT scan of whole body (nothing), negative for EBV, CMV, positive for HHV6 in blood but negative in CSF, etc... MRI large lesion showed whirling concentric mass of cysts - looks like a category 5 hurricane that they show on the weather channel.
After ruling out a dozen differential diagnosis through massive amounts of testing - final Diagnosis - Balo's Concentric Sclerosis - MS wicked cousin. Balo's is very rare and only around 60 or so case reports are in the medical literature although more have had it.
7 days of round the clock IV solumedrol and some immediate improvement. Wierd foul body odor highly present in hospital. Discharged a couple of days before Christmas. Still very out of it, thin, unable to use right arm at all, difficult walking and very little speech communication ability but able to walk again. To put this in perspective on Thanksgiving day he had played around 4 hours of tennis.
We were referred to local MS specialist who very kindly took us immediately and despite several month waiting list for new patients and who has had amazingly two previous Balo's patients. 1 lived, 1 died. He gave my husband a 50/50 chance of being alive in a year. He also recommended induction therapy with Novantrone (12meters/sq) every month for 3 months. My husband was so incapacitated that I had to use durable power of health care papers to become his healthcare guardian and after much prayerful consideration and research consented. This was Dec 23, 2006.
On December 24th, 2006 I implemented a very stringent version of the Best Bet Diet with my husband. I am by profession in immunology and I immediately grasped the food protein molecular mimeocry to MOG and MBP at the epitope level theory behind the diet. All eggs, dairy, artificial sweeteners, legumes and grains were 100% removed from his diet as well as he began eating all organic, all natural, etc... I also initiated aggressive supplementation with
Probiotics and Digestive Enzymes for "leaky gut". Yup he tested positive for it. His chymotrypsin was extremely low and SIgA was way out of whack.
Grape Seed Extract, FPlex and Pycogenol for "leaky blood brain barrier" because from an immunology stand point it made sense to me that something was being walled off by cysts in his brain as part of his natural immune system and that something should likely not have passed his BBB. His immune system is clearly attacking something via the cyst formation that it thinks is foreign - be it bacterial, viral, food proteins, mercury, chemical toxin, parasite, fungi or other neurotoxin etc...
Calcium, Magnesium, B vitamin flushing, Milk Thistle, Vit D (5000 IU), vita K, Fish Oil, Borage Oil, Alpha lipoic, Gingko, Tumeric, Idebenone, DHEA, sublingual B12, coconut oil for the antiviral effect and to put some weight on via healthier fat, etc...
By December 26th it was as if the light suddenly turned back on in my husband. Prior to this he had been eating a large amount of soy, dairy and oats as part of a big health kick he was on. His body fat was 3% and he was rock hard with muscle and playing hours of tennis almost every day . His cognitive function improved (awareness of being in this world mostly) and he stopped falling down. He became able to shower and dress himself. My Mom was staying with me and we watched with awe the changes the diet alone made. We continued to watch this daily improvement from the diet over the next week before everything could be made ready for the Novantrone.
Well - 3 month course of Novantrone went well. His last infusion was early March. Hubby was very tired, we stayed in the house and rarely left other than for doctor appointments during those 3 months. We continued to see functional improvement. Some ability to recognize single words, some ability to recognize some numbers, some minor speech improvement (he basically had about 10% of his pre-illness ability to speak).
His 3 month March 2007 follow up MRI showed the massive lesion was not gad enhancing, a tremendous amount of swelling had gone down and in general the grapefruit had reduced by around 40%. Good news! MS Neuro and I agreed that best next step was watchful waiting for 90 days and then follow up MRI to be done in June 07. My idea of watchfull waiting and his are a little different though. He means no more chemo or ABC's and nothing else. To me it means no more chemo or ABC's and complementary medicine.
During time on Novantrone and my husband's in general precarious health, I was afraid to do anything more than the diet and the supplements. I did have a fair amount of "alternative" diagnostic testing done on my husband during this chemo time including:
Saliva testing for HPA axis - Coritisol curves way out of whack.
Saliva testing for male hormones - progesterone extraordinarily high and testosterone extremely low (my husband is very masculine and hairy).
Th immune complex allergy panel testing. Removed positive items from diet and environment.
WBC testing for glutathione level, antioxidant level, vita D level and a plethora of things - glutathione level low, antioxidant level low, etc...
Digestive stool analysis - chymotrypsin very low, SIgA problems, etc... Negative for Giardia, negative for parasites, negative for yeast, positive for toxoplasmosis. Got Rx for Allina since toxo has brain affinity. Have given two 5 day pulses of Allina since April 1. Observed no reaction or change from either pulse.
Chem 25 panel for liver function, kidney function, etc... all normal.
Provactive blood, stool and urine testing with DMSA for heavy metals - extremely high for mercury, lead and arsenic.
Bioenergetic testing for electrical field imbalances (in addition to working in Immunology I hold degrees in math and biology and have had substantial training in physics). My husband was lit up like a Christmas tree with all sorts of weird viral and bacterial frequencies. I'll not go into this more at this time because I have been following this board for some time and have a feeling this might not be well received... As a result of this testing however substantial homeopathy and other was begun in January 2006 for viral, bacterial and other causes.
I have also had my husband routinely treated with guided imagery hypnotherapy, crainosacral therapy and weekly accupuncture with good results.
During these months of chemo, I read and researched until bleary eyed every day to make sure I was better informed.
I learned from our board certified IM who specializes in chelation for CFS, FM, Parkinson's and MS that in his large practice that nearly to a one - all of his patients were either involved in an accident with some pretty good blows to the body or had some sort of surgery in the 1 year period prior to diagnosis. His thought was that heavy metals and some pathogens are stored in the bones, joints and various body organs and when trauma occurs these are released into the body. He cited that many elderly who fall and break a hip rapidly descend into dementia something I have observed myself. Metals - maybe?
Also, as many on this planet are glutathione deficient from daily doses of modern day stress coupled with the stress of poor nutition, toxins in food and air coupled with further glutathione depletion from anesthesia,etc... that the trauma from an accident or surgery floods the body with the stored heavy metals and the body is too glutathione deficient to handle the flooded load and disease sets up.
My husband was severely glutathione deficient for many reasons and had just had surgery to fix a torn shoulder labar a few months before August 06 onset.
As a result of this, I began in March prepping my husband for post Novantrone chelation via supplementing with 150mg of transdermal glutathione daily. I know many use NAC but I was worried that with his GI problems he would have malabsorption and not correctly form enough GSH. From the transdermal glutathione alone he experienced a really interesting healing reaction - red itchy rash on hips, back of knees and under arms as well as wierd small bumps all over his fingers which ultimately erupted into some pretty wicked looking peeling and flaking as well as both outer ears began to flake and peel - even down in the ear canal. Major accupuncture points in both palms developed circular dry peeling. He also had profound nightsweats for about three weeks. It got so bad that I d/c'd the glutathione. Once this resolved, I saw a bump in his use of his arm, some speech and general cognitive awareness.
Let me be clear - I don't think heavy metals caused my hubby's Balo's but I do think they do create an unnecessary load on his body.
My plan for oral chelation began in earnest 3 weeks ago. I started back with the TD glutathione for about 7 days and then began oral DMSA. The first chelation, I stopped all mineral supplements, gave oral chlorella and then gave 300 mg DMSA qd for 3 days and then waited for 11 days. Planning for a 3 days every two week cycle. From first chelation noticed no change other than my husband's fingers smelled like heavy cigarette smoke llike they did before he quit and he hasn't smoked in a couple of years. His arsenic level was the highest of all and that is apparently common in smokers.
Chelation #2 on May 21, stopped minerals, gave 400 mg DMSA in 100mg divided doses every 6 hours since half life is 3.5 hours (can't find anything on duration of action) for 3 days. No chlorella this time. By day 2 hubby tired and cranky. By day 3 hubby very spacey with lots of "brain fog" which continued until day 5 when I reloaded him with minerals and gave him a B12 shot oh yeah - I give those too. This seems to be a more effective dosing regime based on my N of 2 trials since I got a reaction. Next time I will give the same dosing schedule and add the chlorella back. He had not shown "brain fog" confusion since early January but it was one of the first signs I observed when he was first ill last year. Next chelation in 11 days.
After resolution of probably chelation brain fog, I started on May 29th, 2007, doxycyline 100mg qd with plans to progess to full Wheldon/Stratton CAP protocol to see if he shows signs of die off reaction. He tested neg for Chlamydia but positive for Mycoplasma. Within hours of first doxy more major brain fog but everything else seems okay. I am checking him religiously with neuro exam since he can't always communicate what is taking place.
Today all morning long he was fine, clear as a bell, with zero observable confusion. Around 2 pm I gave him his 3rd doxy. Within 2 hours - major brain fog set in. Hmmmmmm.... By 8 pm tonight it seems to have completely resolved.
After 3 doses I am going to move the doxy to evening so that he can maybe sleep off most of the fog. I am also going to add daily chlorella to see if that will help mop up die off if this in fact a die off reaction and not disease progression.
My husband has also communicated that he feels sad since starting the doxy this week. Not sure if it's the doxy or if the reality of his situation is really hitting him. Interestingly enough, I have not told my husband that I have started him on chelation or CAP protocol to make sure I wasn't creating any psychosomatic reactions. To be ethical he has given me 100% carte blanche to handle his medical issues in writing and duly notarized by our atty and several witnesses.
Currently also considering LDN and have it compounded and ready to go but trying to add therapies at reasonably safe while still aggressive pace.
It's so hard to watch the brain fog from the chelation and now the doxy. Mostly because I am terrified that they might not be causing it and it's the disease.
Improvements from the Kitchen Sink Therapy - since December 2006 - so far - regained ability to walk, gait normal - 3 miles daily, can ride exercise bike and use eliptical with ease. Able to shower, dress and provide self grooming other than shaving which I still do for him. Balance seems normal as evidenced by ability to do one leg yoga poses. Able to write own name from memory but not anything else. Able to read some and gets general gist but needs me to help. Aphasia/Speech improved but is now maybe 40 to 50% of pre-illness capacity. Tolerates heat and exercise well but speech therapy, group conversation and concentration tasks absolutely create profound fatigue. Passed six months seizure free and is able to drive again. Has played 9 holes of golf - was a scratch golfer played like a hack on this 9 but he played! Able to hit volleys on tennis court and as of about two weeks ago - able to serve the ball. Biggest tennis problem now is apraxia of his right hand. Brain fog on Tuesday evening - first day of 100 mg doxy was so profound that he couldn't figure out how to use our very ordinary door key to open the door. He had to sit down and rest for about 20 minutes and then retry.
Wow - if you are still reading this opus ... it's been very cathartic writing this today. I plan to post periodically to report progress. I know there are bound to be others out there with Balo's or other extremely serious forms of MS and the internet can be a powerful place to share.
I am not a doctor so please don't take any of what we are trying as a good idea. I have assembled a strong team of health care professionals who I am consulting regarding all of this including two board cert IM's - one who specializes in complementary medicine and accupuncture and the other who specializes in chelation as well as an excellent Naturopath. Our neuro who specializes in MS is open to complementary medicine but doesn't really prescribe it. Largely I suspect because he participates in a ton of drug company clinical trials and alt medicine is not allowed in most clinical trials.
As far as the brain fog goes, I was drowning in it before I started, but it cleared pretty quickly. Now I am only on intermittent treatment, I can tell more accurately how various things affect me. To put it briefly, the two weeks when I am taking abx I might as well write off, so I am glad that it is now only two weeks every three months.
I wish you both the best of luck with this treatment: you must kep us posted.
Thanks for the encouragement. Also, thanks for being so dilligent about helping others! Over the past 5 months, I have read most of your posts on this site and CPN as well as your husband's and a number of other trailblazer's. Very helpful !
Something is walled off in cysts inside the demyelinating lesion in my husband's brain, not sure what it is since they unfortunately didn't culture tissue taken during the crainiotomy but given a 50% chance of death in one year and the possiblity it's bacterial - I'll take an antibiotic trial anyday.
Thank you for sharing your story about the struggle you and your husband have endured with such a terrible illness.
I always encouraged a health diet and other natural means to help subdue the inflammatory MS symptoms. I've had fairly mild RRMS for decades. If I hadn't been health conscious, I think I may have had a much more aggressive course from my early twenties. I could be wrong, but I like to think my efforts had some effect on my health, in a good way.
You'll be in my thoughts in hopes that your husband continues to improve.
I notice that you are starting Tysarbi next week. What prompted that decision if you don't mind my asking? I am hoping you see excellent results !
Hi Daisy,daisy wrote: I notice that you are starting Tysarbi next week. What prompted that decision if you don't mind my asking? I am hoping you see excellent results !
I'm having significant progression from the MS, and I want to keep working. My energy is almost nonexistent and the pain and spasiticity and cogfog are getting worse. I'm only 49, and I started my career late in life after raising our sons.
I want to go strong for another 49 years. I guess that's why I chose Tysabri. Besides, I tried several of the conventional meds for MS and I wasn't able to tolerate them. If Tysabri doesn't work out for me, I'll find a way to tolerate one of them though.
Thanks for asking! I start Tysabri on Monday.
David showed me the pages in Oppenheimer's Neuropathology: who knows what may be inside those cysts so it makes sense to try anything safe, regular or alternative. Watch out for a private message from me in a few days.
My husband on just Day 8 of Doxy 100, NAC 600 and TD Glutathione has been vascillating between clear as a bell and it's almost as if he is drunk.
Sunday he was completely fine and then Sunday night he complained of a slight headache and seemed a little confused as we called it a day. Yesterday, Monday, he stayed in bed all day complaining of being extremely tired. Today, Tuesday, he has complained all day of feeling tired and he has seemed almost as if he's drunk part of the day - very confused, childlike and a little giddy. This is all new.
I freaked out so bad over his odd behavior today that I even called our neuro because hubby was trying to get in the shower having forgotten that he had just gotten out of the shower not 20 minutes earlier. He was so out of it that I just had him lie down because he seemed so wobbly. A few hours later he seems better.
Neuro is sending us for a EEG tomorrow to make sure it's not his seizure medicine and we are already scheduled in two weeks for MRI and we will see him live then.
I realize people get this from a Flagyl pulse - but from just NAC and Doxy 100mg QD?
This is so nerve racking I hope I have the fortitude to continue this for my husband and I am praying it's not the Balo's lesion activating again.
Good advice. You are right - sometimes I get so caught up in taking care of my husband that I omit myself. Classic for caretakers I think.
I caved on both the NAC and the Doxy and stopped giving them both earlier this week. He was also due for a little chelation and I dropped that too. My husband was so out of it I was terrified. Slowly but surely he is coming back around. He's still a little off but he seems to be turning a corner. If CAP therapy brings back the symptoms of the disease from die off, my husband's are all going to be loss of cognitive function. I am going to need to be better prepared emotionally.
I know better than to start and stop antibiotics due to resistance issues but I am going to have to regroup and go at the introduction of new therapies even more slowly. We have been going at turtle pace. Now I am thinking snail...
We have a MRI coming up in less than 2 weeks. I am going to hold off on everything until we see how things look and then wade back into the water slowly. My plan is to reintroduce NAC in 100mg increments and keep bumping to a full dose as tolerated. Once that's well tolerated for a couple of weeks then I'll add either azithro or doxy. Slow and easy...
Thanks again for your comments!
As far as I can see that is the best idea, especially since a new MRI is so near. Once that is done, reintroduce NAC first, little by little, then add doxy rather than azithro because it does tend to be more easily tolerated. 50 mg will be the smallest clinical dose, then build up from there as and when you can.
With your training, you know all about resistance issues, but this small break will give you time to sit back and look at things with a clear head.
I have a friend whose mother had a complete nervous breakdown through looking after her seriously ill husband. In the end it was all too much for her. The worst thing for everyone would be for that to happen to you.
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