Wednesday, August 17, 2011

Comments of hyperacusis


One thing about writing a blog is that you get very perceptive comments. Here are a few comments on hyperacusis, thiamine and sensitivity issues. They both expand on and confirm points made in my previous post on hyperacusis. Thanks for the contributions.

Erik Johnson:
"Cindy Duehring, co-founder of the Chemical Injury Information Network and winner of the 1997 Right Livelihood Award (The alternate Nobel Prize) suffered from severe noise sensitivity. The sound of her own voice induced seizures.


Cindy Duehring made a surprising and extraordinary shift in focus during the last months or her life. From investigating chemicals, to studying mold."

Sheena:
"After having a severe relapse for 5 years and amongst other things trying a high protein, low carb diet, I ended up in the hospital unable to digest anything and with hypoglycemic symptoms. They gave me simple cars and 200 mg of thiamine. I woke the first night feeling euphorically better, put on weight and was discharged. At home I switched to an easy to digest diet but a year later I'd again deteriorated to the point where I was struggling to digest anything. So I bought myself some B1 capsules and again instantly felt better. Unfortunately no doctor has been interested in finding out what my problem with B1 is and I think there would be no chance of getting injections in the UK. I find it particularly annoying that I'm having to self treat myself with any doctor support or investigations."

Kelly:
"All drugs will do is temporarily suppress symptoms (with the exception of those that might treat a CPN or other infection). Check out RIBOFLAVIN. Works with B1, activates B6, is essential for proper mitochondrial function, treats seizures, tremors and above all, the deficiency of which causes extreme SENSITIVITY TO LIGHT, among many other symptoms."

Anonymous:
"Neurontin helps with noise, sleep, anxiety and some pain. Increased brain fog is the major side effect (take Lithium Orotate 3x's/day to counteract this along with NeuroProtek 4 x's/day.) Foam ear plugs at night are a godsend. But I'm the first generation of this illness and probably don't have it as badly as some."

Jim K:
"You might also look into secondary porphyria as a cause of hypersensitivity to noise, light, and sensation including pain. Intracellular pathogens associated with ME, such as chlamydia pneumoniae, as well as mitochondrial ATP dysfunction makes for inadequate ATP to complete heme production in certain cells. Incompete heme by-products, porphyrins, are highly neurotoxic and can accumulate in body tissues. Porphyrins bind with GABA receptors, the natural buffers for our nervous system, and make for inadequate inhibitory control of stimulation. The result can be increased pain, hypersensitivity to sensation and cognitive dysfunction. Sounds familiar? All common overlap with ME. It is a commonly overlooked result of ATP dysfunction."

Anonymous:
"I am familiar with the most severe type of hyperacusis - the type where you have to whisper; tiptoe in stocking feet; ban music; replace the telephone ringers with flashing lights; remove ticking clocks; eat off quiet paper plates with plastic forks; cover the window with sound-deadening padding; cover the toilet with a sleeping bag. You wrote:"Most patients suffering from hyperacusis try to protect themselves by covering themselves up with earplugs and noise blocking ear protectors." I don't think this protection is a bad thing. I look on severe hyperacusis as a brain injury, and I think it is good and necessary to protect the brain as much as possible for a period of time. I also recommend the tiny, in-ear noise producing gadgets that can be controlled by the patient. And yes it does take time to recover - maybe a couple of years - but people do recover."

Kkrizani:
"I have been taking a supplement called Benfotiamine which is a form of fat soluble thiamine for seven years. I started it because it is used for preventing damage to cells from glucose in diabetes (which I also have). Despite being fat soluble its been shown to be non-toxic in studies overseas. It stopped the neuropathy that was developing in my legs and feet. If I take it, no neuropathy, if I stop the pains starts within a week. Pretty straightforward. Here is where I order it from - they also have a good FAQ: https://www.benfotiamine.net/default. aspx"

Rebeccafromdaforums:
"I have severe ME/CFS and once experienced extreme sound sensitivity, to the point where I had to wear both earplugs and earmuffs to block the sound of water running or the hum of the refrigerator. As tested by my audiologist, my maximum sound tolerance was 30 decibels, the rustling of paper. I could eventually whisper a little with people, but doing so was difficult because I had to take out my earplugs and deal with the ambient noise of insects buzzing. Over about 2.5 years the hyperacusis did gradually go away with the help of the Modified Tinnitus Retraining Therapy, which involved graded exposure to while noise emitted by devices that look like hearing aids. The noise sensitivity alone was enough to drive me to the limits of my coping ability. The isolation twisted my soul."

Tuesday, August 16, 2011

Losartan

My Google Alerts brought this interesting mitochondrial study today. The drug Losartan rang a bell. Dr. Ritchie Shoemaker had mentioned it to me in Reno in 2009 as he was explaining his poster paper. Dr. Rosamund Vallings wrote a bit about it in her summary, and I found the following on the Phoenix Rising website.

"TGF-beta 1 in the treatment of autoimmunity in CFS associated with HLA DR by PCR - Ritchie Shoemaker - The ability of Losartan (up to 50 mg a day), an angiotensin receptor blocker, labeled for treatment of hypertension, to lower TGF beta-1 may affect TH-17 cells that in turn affect T regulatory cells. Losartan may have a role in the innate immune abnormalities in CFS."

Friday, August 5, 2011

Hyperacusis


The following observations should not be taken as medical advice, as I am not a doctor. All medical decisions should be put in a doctor's hands - if you are able to find one who will "deal” with this illness. On the other hand, many ME patients and their advocates are "on their own" with this disease and its peculiarities. Consequently the normal way of "doing business" does not apply. Most doctors take one look at this illness, and turn away.


Hyperacusis, or noise sensitivity, can be a nasty symptom or set of symptoms of ME. It is one of those neurological breakdowns, along with photophobia, sensitivity to touch and sensitivity to smell or taste that plague ME patients. The symptoms themselves can take various forms. Hyperacusis often is attended by tinnitus or misophonia, two other serious neurological hearing problems.


Noise sensitivity arrives either rapidly or slowly, stays or goes away, gets better or worse - and always follows a course of its own. In other words it is like everything else in this unpredictable illness that is ME.


Hyperacusis is one symptom in the large array of symptoms of ME that affect any and all organs of the body. For those who seek general information on hyperacusis read here and here and here. There are many other valuable information sites. Maiji Haavisto, who writes so well on ME medications in her book "Reviving the Broken Marionette", has an excellent article on photosensitivity and hyperacusis here.


In reading the internet one can deduce this:


Dr. Paul Cheney might suggest taking Klonopin or Neurontin to lower the threshold of excitotoxicity.


Abraham Shulman produced a study showing the benefit of taking Neurontin (along with Klonopin) for hyperacusis. Unfortunately there is also ample anecdotal evidence that Neurontin can make hyperacusis worse. So the patient or advocate is put in the usual bind. Will this drug make things better or worse? Do we want to take the chance?


Dr. Kenny de Meirleir would suggest that the trigger is excessive H2S in the gut. His treatment might be vancocin or rifaxin in short doses, combined with probiotics VSL3 and Mutaflor.


Dr. Dale Guyer might lean towards the idea that the hyperacusis is caused by low adrenal function.


Dr. Jamie Deckoff-Jones speculates on her important blog about sensitivity issues. "I was speaking to the father of a patient today who is having severe light and sound sensitivity, much like the very severe patients in the UK and Norway. Ali is being triggered by smells, even natural smells like essential oils. My light bulb for today was that these problems are all very similar, all extremely heightened responses to different sensory stimuli. My first symptom was heightened and altered sense of taste. Many patients, and autistic children, have problems with touch, can't stand tags in clothing, are hypersensitive to light touch, etc. I suspect it's a kindling phenomenon, less than seizures, but similar, a little less than a full-blown disease, as often happens in ME/CFS. Networks of neurons are being synchronized inappropriately by sensory triggers. Repeated stimulation leads to threshold reduction.”


Right away the patient, or advocate, is confronted with various "possibilities”, or causes, of the sensitivity issues: brain excitotoxicity, excess H2S, low adrenal or thyroid function, or continuous mini-seizures. To these can be added mercury poisoning, mitochondrial myopathies, and Lyme disease. What can one make of this? Perhaps the reader can add to the list? I know what ErikMoldWarrior might add - and he is correct.


Several interesting items surface on the internet. The first is the repeated connection of neurological sensitivity issues with Lyme disease. Certainly these issues are also associated with ME, but since no one knows what ME is (or it doesn’t exist), suddenly Lyme becomes a more interesting avenue to explore. Dr Brian Fallon, a noted Lyme researcher, conducted a very small (could hardly be smaller) study at Columbia using the drug Carbamazepine. (Please notice the name of Pawel J. Jastreboff on the study.) This study followed two Lyme patients who took Carbamazepine for hyperacusis and both showed improvement. There was no follow-up study. My email questions to Dr. Fallon went unanswered.


In reading about Carbamazepine, one notices that it has certain side effects, some of which are not pleasant. This includes Stevens-Johnson syndrome that you can read about if you want to get frightened or discouraged. SJS will resurface when and if Rituxamab becomes a real possibility for ME.


A good article on Lyme disease and hyperacusis can be found here. It is worth mentioning again Melody O'Beau's fine article on Mitochondria disorders and hyperacusis and thiamine activation problems.


The prudent advocate will approach this very difficult Hyperacusis situation with caution. Hyperacusis is an extremely delicate issue, and it does not lend itself to a lot of banging around. Initial hopes will lean towards the noise sensitivity going away on its own- exiting from the stage in the same fashion that it made its appearance. The chance of this happening is low, but one can hope.


The next logical step is to rule out an ear infection. Having a doctor look into the ears rules this out pretty quickly.


It also seems reasonable to make a concerted effort to determine if any existing therapy or drugs are producing this symptom. This process involves getting off of all new (or old) drugs (or supplements) that might cause hyperacusis. This process in itself takes some time, and precludes moving forward at the same time. In order to be rational in these situations one must be patient and thorough and, as usual, the patient is on their own. If one has the privilege of asking a doctor about such neurological sensitivities, one gets a shrug of the shoulders.


One can read that Doxepin, Elavil, Lorazepam and various sleep/anxiety medications have side effects of sensitivity issues, particularly photophobia (or light sensitivity). The side effect numbers are very small, but they do have to be considered.


In terms of drug treatment one can read that Klonopin or Neurontin can both help and exacerbate hyperacusis. Does one want to take the chance with these drugs? It is a flip of the coin.


Having set aside the idea that drug or supplements are the cause of the hyperacusis, one has to keep looking for a way out.


There is evidence, slight, that magnesium can help, especially if it is combined with high dose B6. There is one study of autistic children that shows some benefit of this therapy. There is also some thought that thiamin deficiency has something to do with hyperacusis, and this can be seen in another post. Sleep deprivation can certainly exacerbate sensitivity issues, leading one to fix problems with sleep.


In the meantime, the patient has to be protected from loud or unexpected noise. This can take many forms - including building sound blocking rooms and windows, using drapes, getting rid of noisy neighbors, shutting down the nearby lawn mowers. Once one enters this business of trying to avoid or limit sound, one notices that certain problems arise. For instance, it is very difficult to silence birds or children's playful voices, or traffic moving by on the street, all of which cause great distress in the patient and the advocate, neither of whom really knows what is happening or where this came from or where this is going. Welcome to nightmare land.


Ongoing, severe hyperacusis can be life altering. One ME patient with serious hyperacusis says that it “twists the soul” (or "warps the soul"). The situation can be worsened by other sensitivities, the inability to tolerate light or the inability to speak above a whisper, or indeed, speak at all. The consequence of hyperacusis, especially if it is attended by photophobia, is that the patient is "walled up"- completely cut off from reality, unable to have information moving in and out of themselves. Can you imagine the effect of such isolation? Most of us would go right off the deep end. It takes an unusually strong person to withstand this peculiar tortuous form of brain sensory attack. At its worst, hyperacusis is a living nightmare.


Floating in the background is one treatment approach, one that indicates a way to overcome or neutralize hyperacusis, no matter the cause. This treatment - Tinnitus Retraining Therapy (TRT)- places hyperacusis in a category of being something that can be reversed.


An ENT doctor, a friend, was kind enough to look at my daughter’s ears (determining that there was no infection). He wrote this to me:


One thought about noise sensitivity - the typical remedy for that is to gradually increase a white noise exposure over time. It is based on the body’s ability to accommodate: when you are in a noisy room full of machines, but you don't notice the sound until someone turns them off - that is because your body accommodates and recognizes that it is not important sound. So noise isolation can TYPICALLY make the sensitivity worse. What we would generally recommend is that the person get a very quiet, non-irritating white noise - such as soft radio static, a fan, or a baby sound generator. The person very gradually increases the volume as they find they have tuned the sound out. If one couldn't tolerate it on the lowest setting, you could put it on a timer to start at night while sleeping, and turn off in the morning for a while, and eventually to be on when you wake up and so on. Just like being in the dark all night makes the bright bathroom lights hurt at 3am, total sound isolation can have the same effect.


The heavy-duty sound isolating head phones may be causing her pain - they work great, but put a lot of pressure on the ear, which can make it tender.”


The advice was welcome news as it reinforced the direction that I was moving. I had been aware of TRT for years, in relation to tinnitus.


TRT is fully and completely adaptable to hyperacusis. TRT is a tinnitus/hyperacusis therapy that was invented by Margaret Jastreboff and Pavel J. Jastreboff. It is taught and practiced across the US (and I assume other countries). It is fully adaptable to ME and Lyme patients, and in many ways fits well other treatments with which ME patients might be familiar – meditation, resting and pacing, and amygdala retraining, among other things.


An article by Pavel Jastreboff and his wife Margaret on hyperacusis is here.

http://www.audiologyonline.com/articles/article_detail.asp?article_id=291


The treatment protocol is very specific - yet time consuming, and slow. It is available in two forms – either with the guidance of a doctor or an audiologist, or done on one’s own. Information on doing it on one’s own can be found at the Hyperacusis network where you can order a pink noise cd and receive full instructions on how to proceed.


The key to success in TRT is discipline over time. Often it takes months to see improvement. Baby steps are the name of the game.


Fear of the unknown rears its ugly head with these sensitivity symptoms. They are terrifying in themselves, especially since so little is known about them. Overcoming the fear and uncertainty is the first step to take to escape hyperacusis.


Several key ideas are important. Most patients suffering from hyperacusis try to protect themselves by covering themselves up with earplugs and noise blocking ear protectors. While this is a natural reaction - to pull back into an avoidance mode - this protection only heightens the problem. The patient must get off the ear protection devices. This might take time, and it is also dependent on several other things.


The second important point is that the patient must learn (or know) that noise (what they perceive as loud noise) will not "damage" the ears (unless, of course, it is over the OSHA levels that will damage the normal person’s ear).


The third essential factor of recovery is that all “control” of noise must be in the hands of the patient. The patient must have the confidence that they can control the level of incoming noise. TRT uses either pink or white noise machines to create a constant level of tolerable sound to the patient. This can be agonizingly low (imperceptible) at the beginning. Brookestone makes an excellent “sound machine”. This has a volume control that can easily be adjusted by the patient.


A fourth key principle is that all sound associations need to be “positive”. This can involve listening to favorite music or recordings of sections of the Philadelphia Phillies games (of whom my daughter is a great fan).


These are the bare bones of the more elaborate but relatively simple and direct process known as TRT. Further information about TRT is available on the internet, or preferably from an audiologist who knows how to guide it.


Please be aware of the possibility of functional thiamine deficiency, low functioning magnesium and/or B6, and sleep deprivation issues.

Wednesday, August 3, 2011

Squeaks and Peeps - and a few sharp bites


A number of weeks ago I read, in quick succession, several articles about Dr. John Coffin. The first told of his and his colleague Brigette Huber's research interest in HERV K18. This is serious research and an "artful collaboration". This article makes abundantly clear where Dr. Coffin's immediate research interests lie. (To some it has long been known that Dr. Coffin has been attached to this HERV K18 retroviral connection, an idea that contends with XMRV.) This is all well and good, serious and legitimate in its own right. The question is, with this background and association, how did Dr. Coffin gain prominence as a"neutral" party in the emergence of the association of XMRV with ME/CFS?

There is another, more predictable, article here, where Dr. Coffin goes knocking about with "the XMRV thing". This has been a habit of his now for over a year.

Because of this conflict, and because of his inept grandstanding, Dr. Coffin has limited credibility. However, he has achieved what he set out to do.

It is worth looking at what we know.

Dr. Coffin was included in early talks about the emergence of XMRV and ME/CFS in the summer of 2009. How he was included in this is anyone's guess. Presumably this "surprise" paper, soon to be published in Science magazine, needed "special handling". Little did the presenters of the paper realize what this "handling" would mean, and what the consequence would be of giving others the heads-up on XMRV.

By the time of the CFSAC meeting of late October 2009, Dr. Coffin, in one way or another, had insinuated himself onto the public stage as a "retroviral expert" - regarding XMRV. Many of us got to see him preening on the videos of this meeting. At that time he presented himself as a dispassionate observer with "a detached interest" in this new retrovirus and its association with ME/CFS.

Seven months later, Brigette Huber gave a presentation of her HERV K18 research at the 2010 InvestinME conference in London. Simultaneously she had also been busy doing a little work on XMRV, looking in the blood of 110 patients of Dr. Susan Levine.

Dr. Huber held in her little valise the results of this study - but she informed participants at the conference that she would not reveal the XMRV study results in her presentation the following day. (The results were suspected to be negative.)

While it was late in the evening in London, it was still cocktail hour in Boston. We can imagine Dr. Coffin, sitting on his porch, listening to his beloved Red Sox, sipping his Courvoisier. We can see him on the line, long distance.

For some reason - your guess is as good as mine - Dr. Huber changed her mind overnight - and at the end of her HERV K18 presentation, clumsily announced the negative results of her XMRV study. This had an unseemly feeling to it. Dr. Peterson leaned towards me and said that he had "never seen anything like this". As she scurried out of town, one imagines that Dr Huber was a little chagrined at having presented this negative information in front of so many sick and disabled patients. At the time it was difficult to determine exactly what the point was. There is no question that it was a sandbag job, and that Huber was shoved into it.

From this moment, it was clear the Dr. Coffin was "on the other side" - pushing against XMRV.

This feeling of Dr. Coffin's "softening" on the XMRV association with ME/CFS was reinforced in September 2010 at the XMRV conference, and again at the Blood Working Group in December 2010. In Gaithersburg, I was able to witness his "academic challenging" - partially supportive, partially equivocal, partially negative, but always shifting positions. The water was being stirred, and it was becoming muddy. Those of us in academia all know that the preferred position is to shoot at others (and how easy it is), and this was on full display on this afternoon.See here.

By early April 2011 at the NIH Dr. Coffin was directly and publicly engaging Dr. Mikovits in scientific needling, still posturing as a "neutral force", directly trying to "deep six" XMRV research. See here and here.

Over these months, there was a series of negative squeaks and peeps coming from others, presumed "academic colleagues" of Dr. Coffin - all aimed to marginalize the association of any viral or retroviral research with ME.

Was Dr. Coffin the best retrovirologist to take a "neutral position"? Who assigned him the position - Fauci? Was he ever "open to suggestion" on XMRV research in the association with ME/CFS - or was his position always academic posturing, a perverted form of "career enhancement"? Why would he bother? What is at stake? Doesn't he have other things to do? It is all a bit thick.

Whatever Dr. Coffin's original intent, or his original involvement, "the goal" has been reached, the one that had been announced in the late fall of 2009 that the WPI was "going to be taken out". XMRV has been "put on hold", and the WPI and their efforts have been stymied. Now we have to wait - and for how long, and for what?

While Dr. Coffin tries to tread a narrow line, knocking about XMRV and at the same time leaving open the possibility of another virus or retrovirus (which will never materialize and which he never will pursue), other folks are less subtle and are more openly aggressive. Coffin is straight out of the American university system. He is careful and covers his bases.

The fellow in the UK (who will remain nameless) plays roughhouse. I opened the paper the other day and read the headlines - and an incomprehensible idea floated into my mind. I said to myself, "Holy smokes, someone finally has pulled the plug on these suckers!" In a few seconds I realized that I had been deked, and the "other guys" had pulled off another tremendously successful stunt. You have to hand it to them, they are clever, resourceful - and dangerous. (This BBC story was a first-rate psychological inversion, where reality is stood on its head.) There is something at stake here. This UK game is not like American academic life. It is real hardball, played with steel bats and no gloves.

And where are our friends Amy Marcus and David Tuller these days? What happened to their story, the one that was going to bring them their journalist reward? Their story lies in a ditch. It was the wrong story - a story without legs. The bottom line is that the storyline has been lost, the tables have been turned. ME has again been smushed in the public arena.

For those of you who think this is a battle over XMRV, I suggest you think again. This is a concerted effort to "deep six" this neurologic illness, and put an end to any sustained serious research into it. The evidence lies there at our feet - there is no data on this illness, and there is no emerging newly fueled research. All outside effort is towards slamming the door.

So the situation is now put in the hands of Daddy government, and we are to wait dutifully for him to come to his conclusion. The problem is that Daddy has not proved himself to have been a good Daddy. On the contrary, he has been abusive, mean, unpredictable, indifferent, inconsistent and venal. Where does that leave us?