Encephalitis Muscle & Brain Seizures From Bad to Critical how do I get help!

[MoonFlower55]

Dear Cort & ME Community
I recently watched "Her Brain Was on fire." I came from Kauai back to the mainland.
Knowing after a stressful event & travel I go into a relapse. But this time was different.
Since March of 2015, I remember I spent weeks in bed, not really remembering much about my first day after a 10 hr. Flight or the next month, other than feeling so bad, I thought I caught a strange flu. I remember vaguely, wondering around the house in a daze, feeling detached. I wasn't getting better. Then I recall the dog in the house was throwing up! That was strange.
27 years being a severe case of ME/CFS I knew something more was going on.
I frantically began searching the symptoms. Everything pointed to Viral Meningitis? If not treated I don't know how long this virus can stay in the body? It took me weeks to find a provider to help me manage my pain severity. In the past, I have had to stay on Klonopin to control the ME brain inflammation, neuro cognitive function, intense migraines, muscle control & CNS pain.
I kept insisting to see a neurologist, and can't get into one for several weeks.
As the doctor immediately began altering my pain meds & Klonopin. Even being on normal dosage, I was having a lot of trouble managing anything. Six months have gone by. A pattern began to emerge. Usually a bad night would ensue, being jerked out of my sleep by involuntary muscle control, or shooting up in bed, when I felt I was falling off a building, crashing to the ground! Lucky I didn't fall off the bed. Then the vertigo starts, ear pain, and the dreaded Migraine pressure beginning in frontal lobes spreading into the neck & spinal column. Aruas, loss of vison on the left side & numbness in the face. Facial nerves start twitching, moving my head down, feeling nerves in the spine. Muscle lock & tightness. Unable to hold my phone or pick up a glass. Hands stiff curling up. Change in smell, taste, hearing etc.. I know this intense head pressure is not a normal migraine. I can actually feel my scalp get mushy, if press on certain places. The stiff neck is painful. Within 2 days of perpetual insomnia, like a sharp arrow going through my brain, I feel like I am on a battle field with gunshots firing.
Soon the the seizure like activity becomes relentless. I usually get a metalic taste in my mouth, when the constant persistan electric shock waves, run in an (S) shape down, back up in spine, full on seizure W/ uncontrollable muscle spams affecting my ability to walk, having to use my hips to make a step. This goes on for days, 10 times a minute. Involuntarily muscle jerks from the neck, arms, shoulders, spine and legs, become so compromised. As if all the muscles are being squeezed out of whatever cells protect them... It is the scariest thing to go through. All the major organs become compromised as well.
This goes on for 5+ days with no sleep whatsoever. I feel as though my immune system is attacking itself! I feel my cells scrambling quickly from the brain moving to different places in the body. Either trying to repair or attack the weak places. I feel as though my brain is starving & cell death is occurring.
Afterwards, I have nothing left. I am am unable to walk for 2-3 days. Muscles to weak to fight. As if battery acid has replaced the spent cell fluid from the tendons & muscles. My memory & speech impaired. Worse with each episode. I am helpless...
I know this is serious, wanting to be admitted several times.
I was afraid to be alone, after my care taker told me I fell 3 times, splitting my lip when I face-planted and having no memory of this, waking the next day wondering what happened. Did I have a seizure? I don't know...
I suspect this is a viral entity, I could fall into multiple categories. I've had Severe EBV at seventeen, taking a year to recover. The swollen lymph glands, nausea and infected lip with herpes type lesions are ongoing.
I was subjected to small particle flux burn-off, from galvanized metals, coming through my ventilation for over 2 years in 1988-1990. Which was the precursor to my accute onset. I think the metals never leave the body, settling into the brain and why I have so many neuro-cognitive problems, with a cyst in the left frontal lobe.
Being 90% homebound & bedridden with ME/CFS ever since. I was 28, I am now 55, having never really improved over the years. Pain & fatigue Scale remains between 8-10. Once in a blue moon a 7 is a good day...
My last attack was triggered by weeks of dense-smoke from State-Wide wildfires, here in Montana. It made sense, my brain was suffering from oxygen deprivation and carcinogenic overload.
I do my homework on your site. Reading the "Thirty Year learning Curve" and the CFIDS Townsend holistic approach from A-ZM. Seems like a good protocol, but is it affordable? And who can help me treat it?
I went to the physicians office, when all this was going on. Thinking he would admit me then & there. We had discussed having an EEG done, thinking this would be a good time to find out what is going on. He examined me, ran another metabolic panel, and a UA for kidney problems. When he pressed on my stomach, liver, and spleen. I about hit the roof! I needed my pain meds & Klonopin to have some relief needing to fill on Saturday. Blocking them till Monday. OMG! The last 48 hours I wanted to die!
I missed his call on Friday, calling straight away on Monday, while MIKE went to fill my scripts. I was told to come back, thinking he would go over my labs, hoping he found something, which gave me hope.
When Mike returned, he canceled the morphine. I could not believe he did that! Another 150 mile trip back. He pulled me in, in a very intimidating way, saying methamphetamine had come up in my UA? I was appalled he would even think that, adamantly denying this, expressing I would never take something like that, after 10 days of insomnia, all I wanted to do was sleep through it!
I told him I had taken promethazine, advair, albuterol and Zyrtec.
Dr. Knight abruptly dismissed me and did not even go over my labs before I left. It takes time to secure another provider, leaving me completely abandoned!
I have contaced pain clinics and any other doctor I could think of here, and no one is willing to help me.
I am now facing the same scenario as Susanna, when I described in her book.
Losing my Mom @34 was devasting. She was my support who diagnosed me. Being Solo, dont get help I need.
I went in Crisis into Mental Health and spoke to a head nurse at a pain clinic 200 miles away. Mental Health wants to admit me in a psychiatric unit and the head nurse, at the pain clinic, who I spoke with for a long time, went before the team of doctors there, calling me back saying, I should go to a chemical dependency center due to Dr. Knights referral. Dismissing all my Medical issues & immediate need for help! Its not right...
Narcotics can be a double edge sword, but I dont abuse or take more. I do lose hours in the month when I don't sleep. Usually 1-2 days. Over the years, I have been through them all. Having permanent vertigo and going off meds before. I would be a total vegetable, no quality of life, or able to take care of myself. This where patients consider ending their lives...
I have been so mistreated by the Medical community. I don't trust any of them or so called ethics! The state of Montana is the epitimy of backwards thinking!
I would think my records would speak for themselves & have fought hard to have some quality of life.
The very thought of having no recourse, or inadequate testing to find out what is causing the encephalitis and seizures is overwhelming!
My greatest fears have come true. It seems I am slipping through the cracks.
I know I need a team of doctors. Brain & Spinal MRI, Lumbar puncture, EBV titers, NK cell activity & the ANT-NMDH receptor. Any other tests that may help with Neuro Encephalitis? I have Medicare ins. Are there any Clinical settings, I could fly out to? I am originally from SLC, Utah. If you know any Specialists who treat ME in that area? IHC is a good Hospital & University of Utah. Finance's are difficult. Any suggestions are appreciated.
Thank You, E.J. Collins
Critically Desperate

 

[Zapped]

Lucinda (Lucy) Bateman, MD is in SLC, UTAH. She's a recognized leader and Champion of the CFS/ME movement.

Why not fax her your post and follow up with a call to request an appointment or perhaps an online visit? Maybe she can help oil the rusty wheels of the medical process (you've found kindred spirits, here) by rendering a professional opinion on your most recent demise.

IMO (and from my own ~30 years as a PWC), there's at least a possibility that your rapid decline following the major stressors you described could have put your system in the '10+ state'. No doubt your solo isolation plays into your greater fear, but why not suppress that urge of 'worst case' until/unless you get some hard evidence - to keep the real anxiety from becoming a 'straw man' to fight off.

Shotgun the need for help far and wide along with the rifled targets. I, and surely others feel your strife and think you're doing the right thing in reaching out. FWIW, there are other PWC's around this forum, phoenixrising.me, on Yahoo.com/groups, and Reddit.com/ who have shared dire straits, some even without any sort of insurance or your writing/communication skills.

Stay with your goal and work a 1-2-3... plan one step at a time, one day at a time as best you can. You can't do more than you're able.

Oh, and stay away from the &*$#^% airport and rest up until you're 'under 10!' Good luck!

 

[MoonFlower55]

Lucinda (Lucy) Bateman, MD is in SLC, UTAH. She's a recognized leader and Champion of the CFS/ME movement.

Why not fax her your post and follow up with a call to request an appointment or perhaps an online visit? Maybe she can help oil the rusty wheels of the medical process (you've found kindred spirits, here) by rendering a professional opinion on your most recent demise.

IMO (and from my own ~30 years as a PWC), there's at least a possibility that your rapid decline following the major stressors you described could have put your system in the '10+ state'. No doubt your solo isolation plays into your greater fear, but why not suppress that urge of 'worst case' until/unless you get some hard evidence - to keep the real anxiety from becoming a 'straw man' to fight off.

Shotgun the need for help far and wide along with the rifled targets. I, and surely others feel your strife and think you're doing the right thing in reaching out. FWIW, there are other PWC's around this forum, phoenixrising.me, on Yahoo.com/groups, and Reddit.com/ who have shared dire straits, some even without any sort of insurance or your writing/communication skills.

Stay with your goal and work a 1-2-3... plan one step at a time, one day at a time as best you can. You can't do more than you're able.

 

[MoonFlower55]

Thank you, I appreciate your input. Lucinda was one of the first people I saw, in the early stage, I wasn't exactly thrilled with the way she treated me. Maybe after 20+ years she has changed. I guess it wouldn't hurt to call her. If she could do a workup and tests that could find what's causing this encephalitis. Its always there. I'm taking it one day one hour at a time. Your words are comforting. I know I'm only one of many. I didn't get this far to give up. I am just so angry, feeling at every turn I hit a brick wall. ♥

 

[kim.der.acquiro]

My sister is in a similar situation (see below for a list of her problems). (I'm posting under her name, as she is registered on this site, but is too ill to participate.) Kim is critically ill and we cannot find a doctor who will help! Contacting Lucinda Bateman isn't going to do you much good. In fact, we haven't been able to find anyone in Salt Lake willing to treat CFS (despite that fact there are potentially 8,000+ CFS patients in Salt Lake County). Kim has been on the waiting list at Dr. Bateman's clinic since May 2013. When Dr. Bateman closed her Fatigue Consultation Clinic and opened Bateman Horne she trashed the "waiting list". Kim is getting weaker by the day. I noticed that the new Bateman Horne website says PWCs need to fill out this online application, so I called the clinic to ask whether we needed to fill out this application, since we've already filled out pages of paperwork for the clinic. They said I did need to fill out the application for her. She later called back and said she had found that paperwork we filled out. I told her Kim was seriously ill and needed to see someone ASAP. She said they hear that all the time and there's nothing they can do. (Anyone who thought they were on the waiting list to see Dr. Bateman needs to go back and fill out that online application: https://batemanhornecenter.org/new-patient-clinical-trial-application-2/)

What we are doing, thanks in large part to Health Rising, is doing a lot of research and we're self-medicating. I too read the Wayne Anderson, ND article "30 years experience treating ME/CFS". Kim's PCP (primary care provider) was going to give her an Rx for acyclovir, because that has helped us in the past. (I have ME/CFS, too.) She chickened out and refused to give Kim the Rx. No one will give her anything further for the pain, so we are using very small amounts of propoxyphene and oxycodone (from a very old Rx) when her pain level goes 10+. If the pain goes unchecked, she gets in this feedback loop. The stress from the pain (physical as well as mental) make the CFS worse, which makes the pain worse. Kim is taking almost the maximum baclofen allowed. (80 mg/day is max, Kim takes 70 mg/day because that is the most they will prescribe.)

Anyway, there are no naturopaths in Salt Lake, or even Utah that use the Byron White method for treating CFS. There are some ingredients in the Byron White formulas that Kim can't take, but we have found many of others in capsule form and we are going to start adding them one at a time. I'll post the ones we've chosen and the web links to Wayne Anderson's website.

We decided that since we can't find a doctor to help us, we are going to do our best to treat our CFS with things we can get over-the-counter (OTC). We're not going down without a fight!

Regarding your false positive for meth. It is deeply saddening to me that they immediately assumed that you are taking meth, rather than checking your other meds or checking to see if the lab made a mistake. I googled "what can cause a false positive for methamphetamine" and got this answer (there were other answers):
"Stimulants, antihistamines and cold remedies, and weight loss preparations"
http://www.doctorslounge.com/pharmacy/forums/backup/topic-49624.html
You need to cross-check everything (Rx & OTC) you're taking. It's likely that something you're taking caused the false positive.

Kim, too, has been treated like a drug addict because she resorts to small amounts of propoxyphene or oxycodone when her pain level goes up above 10. (Her pain level is always above 9.) She has repeatedly asked for other forms of treatment and gotten no help.

I really wish there was a way that we could let the doctor's feel what it is you and Kim are feeling. I guarantee they would be on their knees crying for their mother's if they could feel what you two are feeling for even two minutes.

It is criminal that they feel justified in standing by and doing nothing while their patients suffer.

Kim's symptoms:
neurological problems - “buzzing”, pain (9-10+) especially upper spine (cervical, thoracic), left foot, upper left trapezius, right hand, left & right hip, upper left thigh, including electric shocks, muscle weakness, neuralgia, transient numbness, tingling, clumsiness, brain fog, gray-blurriness in right eye
CFS - severe fatigue (functionality 0.5), fibromyalgia, headache, meningismus, lymphadenopathy, brain fog, with severe PENE (post-exertional neuroimmune exhuastion)

Very, very sincerely,
Kelly Derrick

 

[Zapped]

... Lucinda was one of the first people I saw, in the early stage, I wasn't exactly thrilled with the way she treated me. Maybe after 20+ years she has changed. I guess it wouldn't hurt to call her. If she could do a workup and tests that could find what's causing this encephalitis...

Then you've got an in. People do change (evolve) over time, right? ... .

My idea is to get a workup, beyond ME/CFS, and get referred appropriately, since you're otherwise running into brick walls.

Another symptom suspect: you indicated a doctor changed or removed the Klonopin from your ongoing protocol. You didn't indicate it but are you aware of the significant short and long term consequences of Klonopin withdrawal? They are manifest - and add your severe stressors = X?

[(I knowingly went cold turkey, off KL a few years back - felt other-worldly right away and experienced all kinds of psychedelic-like gyrations and physical symptoms. After a few weeks I HAD to have
it reinstated. I then gradually reduced the dose to very minimum, .5 mg, 2 - 3x daily. Those nightmarish feelings abated. (Cheney was so wrong in touting this drug as 'the one, if you could only have one rx, ...and non-addictive!)]

In that regard, if you haven't read it may I suggest the 'Ashton Manual' on the effects of Klonopin withdrawal and how to get off it? (It's easy reading ~50+ pages, by Lady Ashton, recognized doctor in U.K. who has run a clinic on this very drug for x years. (She must be in her 90's if she's still around.)
It use to be available to view free online or you can order it at their site (only); there was also a link to a forum dedicated to this very topic. ('sorry, ? - try Google to locate).

You can read of experiences related to Klonopin withdrawal which parallel those you described (and confirmed my own) from both sources, above. Given your experiential description I would first reinstate
Klonopin and check the wind before an intensive search for testing (assuming KL is not contraindicated)!

Please keep us updated.

 

[kim.der.acquiro]

Links to Wayne Anderson's website.
Babesia Like Organisms (BabLO): Consideration, Signs and Symptoms
http://www.wayneanderson.com/pages/diseases/babesia.html
GUIDELINES FOR THE BYRON WHITE FORMULAS A-BAB
http://www.wayneanderson.com/pages/formulas/abab.html

Bartonella Like Organisms (BabLO): Consideration, Signs and Symptoms
http://www.wayneanderson.com/pages/diseases/bartonella.html
GUIDELINES FOR THE BYRON WHITE FORMULAS A-BART
http://www.wayneanderson.com/pages/formulas/abart.html

A-FNG Part Two: Chronic Mold Infections and Lyme Disease
http://www.wayneanderson.com/pages/diseases/afng.html
The Byron White Formula A-FNG And Chronic Fungal Infections
http://www.wayneanderson.com/pages/formulas/afng.html

There are some other pages that relate specifically to Lyme Disease. (See the right column on these pages.)

From A-BART we chose garlic, *grapefruit seed, indian sarsaparilla, neem, and usnea. We will also use *artemisia and poke root on a limited basis.
From A-BAB we chose *cat's claw, neem (again), and noni. We'll use yarrow on a limited basis.
From A-FNG we chose (chinese) cinnamon, garlic (again), neem (again), plantain leaf, *sage. And again will use poke root on a limited basis.
(Kim was already taking the things marked with *. She's going to stop the artemisia for a while because prolonged use can cause problems.)

Kim's also taking a number of supplements that are on a list at Health Rising that I can't find right now (but will keep looking). These include nettles, turmeric (with phosphatidylcholine to help generate greater curcumin bioavailability). I'll keep looking for that list.

Kelly Derrick

 

[kim.der.acquiro]

Adverse Effects of Klonopin (clonazepam)
from Wikipedia article - https://en.wikipedia.org/wiki/Clonazepam#Adverse_effects
Common - Drowsiness, Sedation, Motor impairment
Less common - Confusion, Irritability and aggression, Psychomotor agitation, Lack of motivation, Loss of libido, Impaired motor function[vague], Impaired coordination, Impaired balance, Dizziness, Cognitive impairments[vague], Hallucinations, Short-term memory loss, Anterograde amnesia (common with higher doses). Some users report hangover-like symptoms of drowsiness, headaches, sluggishness, and irritability upon waking up if the medication was taken before sleep. This is likely the result of the medication's long half-life, which continues to affect the user after waking up.[citation needed]
[38][39] While benzodiazepines induce sleep, they tend to reduce the quality of sleep by suppressing or disrupting REM sleep.[40] After regular use, rebound insomnia may occur when discontinuing clonazepam. Benzodiazepines may cause or worsen depression.[4]
Occasional - Dysphoria, Thrombocytopenia, Induction of seizures or increased frequency of seizures, Personality changes, Behavioural disturbances, Ataxia,
Rare - Psychosis, Incontinence, Liver damage, Paradoxical behavioural disinhibition (most frequently in children, the elderly, and in persons with developmental disabilities), Rage, Excitement, Impulsivity

Kim was having 6-10 partial seizures a day for quite a while. They were getting ready to label them psychogenic non-epileptic seizures, which basically means they think you have mental problems. Turns out the seizures were being caused by gabapentin/Lyrica. Do investigate the klonopin angle as suggest
ed.
Kelly

 

[kim.der.acquiro]

The more I think about it the more I think Klonopin could be causing or exacerbating a lot of your symptoms. Kim had a really bad reaction to gabapentin/Lyrica similar to your (possibly) bad reaction to Klonopin. Kim's complete list of gabapentin/Lyrica adverse reactions:
partial seizure clusters (6-10/day), increased electrical pain and “buzzing”, weight gain (35 lbs.), edema, severe sleep disturbance/deprivation, visual disturbance, irritability, breast swelling
I can post the OTC meds she uses for sleep and the other pain meds she uses if that will help you.
Kelly D

 

[MoonFlower55]

The more I think about it the more I think Klonopin could be causing or exacerbating a lot of your symptoms. Kim had a really bad reaction to gabapentin/Lyrica similar to your (possibly) bad reaction to Klonopin. Kim's complete list of gabapentin/Lyrica adverse reactions:
partial seizure clusters (6-10/day), increased electrical pain and “buzzing”, weight gain (35 lbs.), edema, severe sleep disturbance/deprivation, visual disturbance, irritability, breast swelling
I can post the OTC meds she uses for sleep and the other pain meds she uses if that will help you.
Kelly D

Hi Kelly, Thank you for all you input. I can see that you are very updated in your research and information, I appreciate the links as well.
My heart goes out to Kim. How long has she had ME/CFS? She is lucky to have you and commend you for all your research and support in helping her...
I was on Darvocet for many years, it worked well for the aching. However, I had to go off Tylenol products and cannot take NSAID'S.
I spent another 2 or 3 hours with mental health today, it seems my options are quite limited. Either I have to go into a psych ward or a chemical dependency setting I require 24 hr round the clock pain meds. My anger and frustration is that I am on the lowest dose possible, not knowing what the outcome will be. And well aware of klonopin and its side effects. Unfortunately, as I stated before, I have had a recent exercaserbation, reactivation of automune response and underlying virus that's has made things unmanageable and gone unresolved.
Thank you for the heads up with Lucinda Bateman. I never was happy with her protocol.
Landon Beals had a CFS clinic in Salt Lake. He pushed my disability through. He treated his patients with gamma globulin or possibly another IV treatment. He immediately assessed me and was having good results with his patients. Unfortunately, funding from California was pulled and had to close down. He went on to teach as a professor at BYU. His Son has been a very severe case as well. I did call him for phone consult even after he closed. You be able to look him up. This was back in 92 & 2000 last time I spoke with him. He may be in Provo.
27 years of going through trial & tribulations, trying all types of medications. I have found that many of them I am unable to tolerate.
I am well aware of the withdrawal effects of klonopin and also narcotic pain medications. I have spent years in maintence therapy, clinic counseling pain management etc...
I am normally not a depressed person, I am sensitive, level headed & have a tendency, when I go into the doctors office, still putting my makeup on and trying to be as normal as possible.
Maybe I play it down, because of my gentel demeanor.
Sometimes that can work against you. Because they dont think you don't look as sick as you are, in day to day living. The last time I went in at my worst. I must have scared the doctor away! I suppose at times this doesn't help my situation either way. After my exposure to heavy metal particles is where I began having a lot of neurological problems.
I am one of those people who have severe sensitivity to SSRIs in fact they actually do the opposite, or cause more vertigo, insomnia & detached mood. I have had so many side effects and I am unable to tolerate most everthing in the SSRI family, even at low doses. I think it's something called Serotonin Syndrome where they do opposite of what they should be doing.
I guess over time having to go on and off the Klonopin it is between my ability to function or my inability to cope function in any capacity or have any quality of life left. Living alone again, I have to be ab able to take care of myself. The encephalitis and the neurocognitive problems that ensue, it has become an elephant in my room.
I am on the lowest dose possible, simply just to keep the seizure type activity and muscles from going into fullblown mode. Which can last for days and is quite intolerable. Way past the withdrawal stage.
During certain periods of my life I've had to go off klonopin for up to 2 years at a time, never able to sleep and having vertigo constantly is no way to live.
So as I explained previously, being on these types of medications are a double edged sword, but at this stage in my life, I need to stay on what works.
I think patients deserve that much. To have some comfort, quality of life is important. My body us just running on empty. The very thought of spending my last days doped up on pycho drugs, or to live in utter agony is simply not my idea of having a life.
At this point I just figure if they're going to take more from me than I can do, I've always known there may come a day I have to make a choice for myself, I do believe patients should have the right in long-term chronic cases to have their choice for long-term chronic pain patients to have a peaceful end with respect - dignity. I think I've earned that? Not to suffer needlessly. My greatest fear living a lifetime of pain.
But is is up to me, as there Is no law in place. I would go to Switzerland if I could.
Sorry to cut this short, but I have been up all night once again and I have to get ready to catch a bus.
I posted some information very exciting technology, you may be interested in. Light & Sound technology. My mother found it for me back in 91 before she passed away.
I used light and sound therapy as well as Rife therapy. Both running around $500.00
If I had that therapy in my possession right now I wouldn't be worried about anything. When I posted and published last night, mor in depth, for some reason it went somewhere and I'm unable to find it.
If had more time I would. But will give you that information.
Go to www.rifedigitial.com
And Theta@nlink.com or look up "The Minds Eye" for more info. I will give you the main number. I am a distributor for Theta Technology, but don't have a web page. If you look up the Minds-Eye I they are the companies distributors.
I simply want to help people and can possibly get give you a break on pricing.
I am surprised that this technology is not more acknowledged. I just stumbled on the Rife-light. this goes back to Dr. Royal Rife. He is a pioneer from 1936 and is the first one to invent a microscope the can filter & see pathogens. His work has come into the digital ages. The Bioresonace has the ability to scan the body and copy pathogen- frequencies, bringing them out of thir hidding places into the bloodstream, eradicating then immediately. this technology has wondrous possibilities and may supersede anything out there without any chemical or medications that cause side effects. He has has had good success in healing hundreds of diseases, including cancer. Within a few month's or approx 2 years. Study the clinical history and research. It is rather small to read and a lot of it. If anything it may just be able to save Kim's life and return her to more normalcy, improving her immune system and getting her life back. please let me know what you think and I will be happy to assist you in any way I can.
It may take me a little while to get back to you. wishing you all the best... lonetiger88@gmail.com under E.J. Collins Google+
Rrspectfully, Lona

 

[Zapped]

Beware of Trolls = doublespeak, quackery!

It's a shame to waste compassion, time and energy on duplicity.

 

[MoonFlower55]

Wasting compassion, time and energy on duplicity pisssss's me off.

Beware of doublespeak, quackery - and Trolls!

It's a shame the victims can't easily be reimbursed... .

I don't understand what you mean?

 

[MoonFlower55]

I don't understand what you mean?

I apologize, if in some way I have offended or wasted anyones precious time or energy. It is not my intention. Still trying to figure out what the intention of "zapped" quote' meant? Big words for small minded people...
I had a Mother who thought outside the box, beyond conventional therapy. I thank her to this very day for that incredible gift she gave me! And to follow your own heart God bless her soul...
I've used light and sound therapy, backed by sound scientific research & science. Some may not believe in high Tech advances. I used the Rife-light in 2007 for 3-4 months during oxygen therapy. Little did I know its more powerful effects it has on the immune system. I had more energy, better mood being more active. I loved it!
I just recently found his work and vision in healing all disease states has continued into the digital age.
I can only tell you, I wouldn't promote anything that doesn't have sound clinical back- ground & scientific data. Having had personal results from this technology, it has been by far, the one thing I could fall back on in getting real & immediate relief naturally, without chemicals.
I have used The "Minds-eye" based off of the Rife-light theory, since 1992. For a small company that has earned it's credibility over the past 25+years and still going strong, adds credibility to their product. It's benefits far out way anything I've ever used, for pain, sleep disorders, mood, cognitive function and energy. It has limitless potential. And great for kids who are hyperactive, autistic with other learning disorders.
My Son sufferes from ADHD & cognitive problems. I felt he needed it more at the time... Unfortunately, I cant get it back. So I was hoping to save for a new one, in a better situation.
The Rife used to cost $5,000.00 It is now available not only for proffessional use, but for inhome patient therapy as well. Both are reasonable and a worthwhile , lifetime investment. If anything it can improve a persons well-being and strengthen ones immunity, in conjunction with current treatment protocols.
The light and sound runs on lower frequency ramps. While the Rife is very powerful using 000.1 hrtz- up to 999 .0 hrtz frequencies.
Why use more antivirals and other meds that are hard on the immune system, that is already compromised?
When it can be accomplished so much quicker and used for life, with no side effects. As well as cost effective, compared to how much is spent on doctor visits, expensive supplements and antivirals along with so many medications w/side affects. But for some of us, who don't have family, to lean on with depleted funds. It takes time to rebuild and save money.
I am simply trying to offer a different approach to any one who wishes to explore it.
Both have warantee's and a 30 day money back guarantee.
After 27 years of living with ME/CFS. Having a bomb dropped on me recently, pretty much turned the tables on my future plans. Luck of the draw, walking a thin line I suppose...
Unable to afford to stay on any alternative or nutritional support long enough to see if it helps. We live with ME, we breath it & die with it. I do my best every hour of every day. I listen & appreciate the input. Although I may not be able to recall terminology, or write perfectly. Forming an opinion, is your choice. We are all different, we react to different things where western or holistic medicine are concerned.
I don't write out of pity, and don't need others judgment or sarcasm, when I am only trying to help other ME/CFS patients in seeking an alternative route for treatment. Weather or not I can help myself at this point , is irrevalent. I am okay with that. A certain calm has come over me.
I have the faith God will see me through it. Sometimes when things don't go as planned? Perhaps my destiny is already preordained. All I have to do, Is walk through it.
I feel deeply for anyone who sufferes with ME/CFS.
In reading Cort's blog below, on this site, "What is Encephalitis " He is very knowledgable, breaking things down and making sense of it, gives me comfort I am not crazy. That there is a meningitis encephalitis usually caused by a viral infection taking weeks to develope and causing seizures. My insticts are sharp. I feel validated in the knowledge in realizing my meds are not the cause. Perhaps the reduction of them are what has caused more breakthrough, of the underlying problem.
There may come a day, when you may ask youself the same question or a sister may look at you with only tears, pleading to end her pain... Will you stand by helplessly watching them wither away, twiddling your fingers thinking, if you let them go, you won't have purpose? Or live 10,000 days 250,000 hours, where one more day, is more than you can do... There are no easy answers, its a very personal choice, each one of us will have to face one day...
I am only trying to open your mind to technology, that in the end/may superceed any clinical advances or trials to date, which could take another decade. While this therapy is available now.
We mustn't forget the Pioneers of medicine. We wouldn't be where we are today without them... They have technology today that can actually see a spirit's soul leaving the body, by its vibrational frequency, as in all plant and animal life. We are all made of energy. But when that energy loses it's life force in the physical sense. Nothing is lost simply on a different vibrational plane.
To each its own in your beliefs.
I sincerely wish all of you the very best in your recovery.
If I have helped even one out there, my life will have had meaning in all of this. I hope some do find relief or a real hope for improving & recovery. My life will have been well spent... To judge another is not anyone's right... That is Karmic Law! This forum is simply about. Compassion, knowledge and understanding. Each one of us have opinions. Empathy is an aquired trate. A person's right to live to their best ability or end their pain, on there own terms, when the Medical community fails them, should be respected.. There are many who have fallen, they are HEROS in my eyes with great courage and should not be viewed as suicide. This stigmatism needs to go away...
My mother had me read Jack Kavorkian's book. Some years ago, to make me realize how much his help was revered and the courage it takes, is not easy no easy task. No matter which way you look at it, will affect your children's parents, wives & husband's lives left to pick up the pieces. I hope one day that Law changes for ME/CFS patients.
Praying you don't have to go through it alone...
May God Bless you & keep you...
Lol E.J. Collins

 

[MoonFlower55]

Adverse Effects of Klonopin (clonazepam)
from Wikipedia article - https://en.wikipedia.org/wiki/Clonazepam#Adverse_effects
Common - Drowsiness, Sedation, Motor impairment
Less common - Confusion, Irritability and aggression, Psychomotor agitation, Lack of motivation, Loss of libido, Impaired motor function[vague], Impaired coordination, Impaired balance, Dizziness, Cognitive impairments[vague], Hallucinations, Short-term memory loss, Anterograde amnesia (common with higher doses). Some users report hangover-like symptoms of drowsiness, headaches, sluggishness, and irritability upon waking up if the medication was taken before sleep. This is likely the result of the medication's long half-life, which continues to affect the user after waking up.[citation needed]
[38][39] While benzodiazepines induce sleep, they tend to reduce the quality of sleep by suppressing or disrupting REM sleep.[40] After regular use, rebound insomnia may occur when discontinuing clonazepam. Benzodiazepines may cause or worsen depression.[4]
Occasional - Dysphoria, Thrombocytopenia, Induction of seizures or increased frequency of seizures, Personality changes, Behavioural disturbances, Ataxia,
Rare - Psychosis, Incontinence, Liver damage, Paradoxical behavioural disinhibition (most frequently in children, the elderly, and in persons with developmental disabilities), Rage, Excitement, Impulsivity

Kim was having 6-10 partial seizures a day for quite a while. They were getting ready to label them psychogenic non-epileptic seizures, which basically means they think you have mental problems. Turns out the seizures were being caused by gabapentin/Lyrica. Do investigate the klonopin angle as suggest
ed.
Kelly

 

[Zapped]

...Relative to reported or exhibited behaviors:
<<worsened depression...
Induction of seizures or increased frequency of seizures,
Personality changes, behavioural disturbances...
Psychosis...
Paradoxical behavioural disinhibition (... in persons with developmental disabilities)...
Rage, Excitement, Impulsivity, etc...>
For resolution consider medical recommendations as originally stated... .