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A deep report on sleep treatment
#1
A deep report on sleep treatment
 
I feel this following is a very important report on my findings living with CPAP:
 
There are so much I have learned that I will try to break all of this into two big reports.
 
Part One:
 
I had a quad bypass in Jan 2013. I was told a number of things, that my Cholesterol was border line even at that time, and that I had sleep apnea. Reading how sleep apnea CAN cause cardiovascular disease I got a tested and was told I suffer from major sleep apnea and that I have complex sleep apneas. And that I needed an ASV machine. 
 
I bought a Phillips System One 950 open box with a two year warrantee from Second Wind CPAP and for a few years all was better.
 
BUT I ran into major problem with these machines, their high failure rates.
 
They seem to fail seem every two to three years. My first Phillips 950 ASV lasted 1.5 years before doing what I have learned is common “going ape with my breathing” it was replaced with an model 960 which lasted pass its two year warrantee and then it went “Ape”.
 
By going “ape” I mean sudden unneeded over reactions to nothing, I can be in bed going to sleep but not there yet and the system will suddenly start controlling my breathing rate, over riding my own control and pumping up the pressure when I am still awake and have NO trouble. And it will wake me up a couple of times at night seemly over reacting, again for no reason I can find, there was no report of any problem in the record to cause such a reaction.
 
At this point I was on Medicare and access so I asked my PCP to replace my bad ASV machine…but they demanded a new sleep study, and the would only provide a APAP machine.
 
I was showing low AHI numbers so figured THEY were right but I was still crashing nearly every day with only about a couple of hours of being alert….this was very depressing so I looked for help:
 
 
I then spent the next two/three years seeing every Doctor I could.
 
 
The findings were all the same. They could not find any cause of my crashes. I joking said the Dr.s all said, “ I will live to 125 IF I don’t mind doing it so very tired getting there.”
 
 
Then two things turned up. The first was my wife received a Fitbit HR for Christmas.
 
This device seems to be able to monitor sleep cycles. Not just how long one sleeps but the sleep cycles like Light, REM, and Deep.
 
A important report of the Fitbit, it CANNOT report any sleep cycle of less than three hours. As I was waken more often that that I was a little hard to get full night’s sleep reports.
 
I found there are a number of systems to monitor you sleep cycles, I use a system by Resmed called Sleep Score Max, a good system which can give a fairly accurate of all your sleep cycles.
 
 
REM and Deep sleep cycles are very important. With low of no REM and Deep sleep cycles you cannot function.
 
 
I got a Fitbit HR (For Heart Rate) first and found my replacement simple CPAP Machine was badly reacting and stopping most of my REM and Deep sleep cycles. I matched their time stamps and saw every time I entered REM or Deep sleep the APAP would over react after each event and raise pressure to the point I was aroused and pushed out of either cycle, IT was short changing these sleep cycles.
 
 
I dug out my older ASV machine (a much better sleep machine, Adaptive Servo-Ventilation Machines) and did a complete set up. I soon found I have was having a major improvement in my days; my sleep cycles are much better giving me much better days.
 
NOW HERE COMES THE MAJOR NEWS: IF you getting good numbers from your sleep machine BUT still dead tired all the time THIS MIGHT BE THE REASON:
 
 
My research into the subject of sleep cycles turned this up:
This is very much what I have problems with.
 
Sleep Stages article from Sistemma CPAP Blog Supplier #33
 
The Sleep Stages
 
Every night we cycle through stages of sleep that each have a distinct function in maintaining the health of our bodies and minds. For those with sleep apnea issues, the disruptions to these stages can be harmful whether or not you are awakened by an event. In the long term, what is known as sleep architecture, the rate at which a person cycles through the stages of sleep, is affected in ways that can make it harder to sleep even in the absence of apnea events. Whether you have obstructive, central, or mixed sleep apnea, the breathing changes associated with the disorder can also change the way your brain operates in those hours between evening and early morning, affecting everything from heart rate and blood pressure to memory consolidation and emotional health.

Stage One

Also called NREM1 (Non-REM Stage 1), the transition from being awake to being asleep is a lot more complicated than we previously thought. In a normal sleep cycle, stage one only lasts about five minutes, or just short of 5% of the entire cycle, but it is an important transition because it initiates the sleeping process and carries our waking thoughts into the lulling rhythms of sleep onset. It is the lightest stage of sleep, but also the period when the mind and body begin to relax into auto-pilot.

Though sleep apnea events can occur during the first stage of sleep, they are much more common during the later stages. Recent discoveries have led to a considerable amount of research on the specific phenomenon of REM apneas, a link that may soon advance our understanding of how sleep apnea affects the memory centers in the brain.

Stage Two

The second stage of sleep is the longest period in the cycle, accounting for approximately 50% of each cycle we sleep through. It is at this stage that firings in the brain called spindles begin to occur in fluctuating rates, as well as activity called K complexes. This is when breathing and heart rate settle into slower rhythms and remain there into the third and fourth stages. While stage one is referred to as NREM 1, stage two is actually the first true non-REM stage of complete sleep. The temperature drops, the muscles relax, and everything slows down into long, steady rhythms.

In regard to sleep apnea, the shift in breathing during stage two can be a dangerous moment, and events are increasingly more common with each stage going forward. In particular, the end period of stage two, just before the transition into deep sleep, is when apnea events are most common at this point in the cycle.
[img=838x16]file:///C:\Users\Rich\AppData\Local\Temp\msohtmlclip1\01\clip_image002.jpg[/img]
Normal Sleep Cycle: Wikimedia

Stages Three and Four (Delta Sleep)

Stages three and four are considered by many to be a single stage of deep sleep. This is the most restorative period of the cycle, responsible for many of the recuperative changes that occur in the brain and body when at rest. Almost coma-like in their characteristics, the deep sleep stages can be difficult to wake from. Slow delta waves begin to take over at this point, and will increase in frequency between the third and fourth stages. In healthy sleeping, each of these stages takes up about 20-25% of the cycle. But for those with sleep apnea, the third and fourth stages can be both dangerous and elusive.
Reading descriptions of the third and fourth sleep stages, one would assume that apneas would be a concern at this point. But due to the disruptions caused by abrupt shifts in breathing, sleep apnea patients often fail to sustain their deepest sleep states. This is not simply a problem of sleep quality, but a serious impediment to healing and immunity. Much of the body’s growth and fortifying hormones do their work during these deep stages of sleep, and without those complete minutes of rest, you can wake with fatigue and restlessness, as if you hadn’t slept at all.

REM Sleep

REM, an abbreviation for rapid eye movement, is the final stage in the sleep cycle, lasting about a quarter of a normal sleep cycle’s time. Called Stage R for short, this period is known primarily for the darting of the eyes, a behavior that occurs routinely during dreaming. Brain waves are the most active during this stage, and vivid dreams occur much of the time. Heart and breathing rates can become irregular, and chemicals are released that cause paralysis in our bodies, preventing us from acting out our dreams.

Studies have not only found that apnea events occur at high numbers during REM sleep, but that sleep apnea patients often spend much of their sleep cycle in this stage, leading some researchers to propose that they could be skipping stages like deep sleep entirely and instead alternating between other stages throughout the night. Yet at the same time, research published in January of this year proposes a link between sleep apnea and memory retention. The type of memories that are disrupted in sleep apnea patients are the same types of memories consolidated during REM sleep. The research, led by Dr. Andrew Varga of New York University, has also discovered possible links between sleep apnea and depression, dementia, and Alzheimer’s disease.

“For the first time we’ve shown that sleep apnea, an increasingly common medical condition, might negatively impact formation of certain memories, even when the apnea is limited to REM sleep,” said Dr. Varga. What this means for the sleep apnea community is that the fragmented sleeping patterns caused by apnea events can have a direct effect on mental health. As Dr. Varga describes it, untreated sleep apnea is the real issue because the long-term consequences can even more difficult to treat than the apnea.

Future Research

It should probably be pointed out that studies cited in this article relied upon untreated sleep apnea patients as research subjects. Use of CPAP (Continuous Positive Airway Pressure) and other sleep apnea treatments can potentially limit sleep disruptions caused by the disorder. But it is important to understand the direct effect of apnea on the natural stages of sleep. Researchers will continue to look into the links between apnea, memory, and how the disruption of the sleep cycle contributes to comorbidity and other health concerns over time. The more we know about the harmful aspects of the disorder, the easier it will be to treat effectively in the long term.
 
References
Journal of Neuroscience – http://www.jneurosci.org/content/34/44/14571.short
National Center for Biotechnology Information (NCBI) – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2893208/
———.  – https://www.ncbi.nlm.nih.gov/pubmed/23366967
Nationalgeographic.com – https://www.nationalgeographic.com/magaz...-of-sleep/
NYU Langone – https://nyulangone.org/press-releases/in...day-events
Psychcentral.com – https://psychcentral.com/news/2014/10/31...76798.html
———. –  https://psychcentral.com/news/2019/02/04...42573.htmlSleepcycle.com – https://www.sleepcycle.com/sleep-apnea/s...-big-deal/
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#2
RE: A deep report on sleep treatment
Part Two:

Last week I found a second way for an ASV sleep machine to fail.

The first way these have failed and I have seen it three times is the machine can react like you have a problem when there is NO problem..it kind of goes ape. Breathing for you and raising the pressure.

The loss of power is a new one. This one was very snaky, a slow death…I found that I was having a problem breathing, I was taking long slow deep breaths, sucking in the air and every once in a while I felt like I could not get a good breath. There just was not any air being pushed into my lungs, almost no air flow.

This is what was happening: The 950 ASV was no longer providing the air flow I required to have a full day of alertness. Talking with Beth of Medical Repair Systems she said she knew of this malfunction with the flow sensor and the loss of air flow in these machines!

It had been reporting good low AHIs so I was unable to see anything wrong. Just as the machines a 950 and a 960 models could not report their own wild behavior when it went nuts.
 
I have been slowly slipping back into the previous pattern of crashing daily, and again after the two to three years of risking my life seeing every possible doctor and having to be rushed to the hospital at least twice with allergic reactions to meds I had been given trying to help my drop in energy levels.
 
ALL BECAUSE instead of treating me based of my first good sleep study THEY insisted on a new sleep study which as so bad I barely slept and then prescribing a damn crappy APAP machine which did NOT really work.
 
SO During that time I had spent the past two/three years seeing every Doctor I could trying to find out what was the matter.
 
IT NEARLY KILLED ME TWICE!!!
 
 
The findings were all the same. They could not find any cause of my crashes. I joking said the Dr.s all said, “ I will live to 125 IF I don’t mind doing it so very tired getting there.”
 
SO I KNOW there is NO hope to find a Doctor that can help me, I NEARLY DIED twice trying…
Then in the middle of the night had an idea, and THANK GOD I had a good second machine my old rebuilt 960 ASV machine to fall back on.

AND the minute I turned it on  I KNEW I had found the problem, IT was giving me air. It was blowing a light brezze into my face, and I no longer was fighting for a breath, I no longer needed long drawn out breaths I was back getting a lungs full of air easily again.

And with a couple of days back on the 960 I regained my ability to function nearly a full day again.

I am SO glad I have a backup Philips ASV machine, I switched to it and it was a major improvement. It fills me so fast I only need short breaths. No straining for a breaths, this malfunction had came on so slowly I did not notice until it got really bad.

So the 950 machine will be going to the repair shop for another rebuilding.

I have found a repair company here in Phoenix AZ, last time a new Mother board and new fan cost only $250.00, it seems that these systems fail about every 2 to 3 years...this is my third failure. This is a god send as my insurance will not cover either a replacement nor a repair. This $250.00 was something I can afford.

The repair shop is Medical Repair Systems, 602- 274-8584 Phoenix AZ.

The second repair shop is Pitcock Biomedical INC. (800) 503-6992 Manchester TN.

So far I have loss 2 950s and a 960 machine. The first 950 did not even make it out of its 2 year warrantee, and the 960 did but failed within 3 years. I bought another use rebuilt 950 and it is the one that just failed.  The rebuilt 950 with a new mother board and fan reports fan hours or life was only 3984.3 hours or 1.5714 years!! My rebuilt 960 with a new mother board and fan has 28558 hours reported and that is 1.117 years on the clock, so I can expect it to fail with a year of farther use.

AND I JUST LEARNED RESPONICS does not allow rebuilding my older model ASV 950 machine!!!

They will no longer supply parts for their repairs. SO I am now stuck with a rebuilt 960 with an expected life of perhaps less than three years, and I was warned by Beth it too may be cut off from rebuilding supplies soon as well.

I may be forced to buy a newer system OUT OF MY OWN POCKET as my insurance will not cover it.


The Newer Dreamstation by Phillips cost nearly Twice as much as the 960, which in 2013 I was able to buy at around $1500.00 as an OPEN BOX sale, the Dreamstation ASV now cost around $2800.00 as an open box sale!!

A prescription is required to legally buy an ASV machine and there are nearly no second hand sales so it is very hard to find any second hand ASVs.

Because my first sleep Doctor and the MAYO Clinic both have shown I have bad sleep apnea, I have complex sleep apnea, I suffer from all three types of sleep apnea I get Obstruction, Centrals apnea and hypopnea sleep apnea. And I have the reports that show this.

BUT as they can seemly only treat my apneas with simple APAP so I cannot get from the insurance what I really need.
 



I spent most of Tuesday 8/18/2020 researching nearly every aspect of my Sleep Apnea problem.
 
I was able to talk with a good number of people about machines, treatment, and how the Doctors and insurance companies take care of sleep apneas.
 
This was two repair services, a reseller of these machines, a Phillips rep. and a Sleep Doctors medical nurse.
 
By trial and error testing and living with two types of sleep machines sense 2013 I have found I NEED a good ASV machine to get a GOOD night’s sleep that is both with low ratings of sleep apneas AND good full correct sleep cycles containing good deep sleep, and good REM sleep.
 
Sadly currently the Doctors and insurance companies have some hard to qualify rules for the type of sleep machine THEY will supply. They only will consider control of the Sleep apneas and NOT the kind of sleep.
 
A simple machine does not respond correctly to my sleep apnea and will report good treatment for my apneas BUT it will over react to my apneas and cut off my deep and REM sleep leaving me wasted most of the days.
 
An ASV machine is much more sensitive to my apneas and does not disturb my sleep cycles allowing me to get good quality sleep not just low apneas.
 
I am running into a fair amount of trouble getting the ASV machines. Here is what I have learned:
 
A) There is almost no way I can prove to any insurance I need this machine. The rules are stacked too high for me to show a need for an ASV machine. They also have another rule: ONCE I submitted to a sleep study in a clinic I am no longer able or allowed a home study. So I cannot do it in my own bed which should give more real readings.
B) ALL high end CPAP machine have a three to four year life span. Thus insurance will fight to use the cheapest possible unit. An ASV Machine costs around $4000.00. (OUCH)
C) My current systems an older 950 is NO longer allowed to be rebuilt as Phillips will no long supply parts!! My current 960 System is still supported but not for long!!
D) There are none better systems than Phillips or Resmed.
E) I was told the new Dreamstations ASV machines are having very low mother board failures BUT will lose their Fans every two to three years, and most likely will need to be replaced by a tech so they can be calibrated to the mother board, if so then I cannot DYI.
F) I have found a company that come HIGHLY rated by many. I am glad I found them. And they are NOT under the thumb of Phillips etc. I now have two repair companies to repair my machines.
G) The best plan I have been able to come up with is the get a newer Dreamstation ASV by any means possible, then have it tested and rebuilt as needed. This will allow me to keep a good running machine for hopefully the next 10 years. At that point I will need to upgrade to the newest machines.
H) Once I get a good Dreamstation ASV, I will keep on fighting to get a second one because of the down time for Fan replacements. Meanwhile I will have my older model 960 machine rebuilt so I have a backup system.
 
It is no wonder the sleep apnea treatment has a 50% failure rate of people dropping out, I can only wonder how many are caused by the cheapest machine treatment possible without checking for sleep cycles are causing people whom use these systems and still have bad days so it seems to not work to give up on them??
 
I found that they will only test and treat about 60 to 70% of the problem. The Doctors and Insurance are only allowed to treat the apneas, not how well your sleep.
 
I am finding health insurance has a few BIG holes in what and how they will take care of you.
 
This is one of them.
 
Sometimes you’re forced to take care of yourself.
 
I hope all of this will help someone.
 
Rich
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#3
RE: A deep report on sleep treatment
Here is the good news about my life on CPAP:

A.      I believe my use of CPAP had nearly cured my life long hay fever. I believe this happened by the filters and that the pressure stops my runny nose and that with 7 to 8 hours of this treatment has trained my sinuses to stop flowing. I found from the beginning the system would stop and then clear my nose within about an hour after putting on my mask and running with the humidifier turned off.

B.      My heart seems very healthy, and in the 7 years sense my quad bypass my blood pressure has improved and I have not had to change my blood pressure medicine doss from the second lowest dose of 5 MM of alopiden .

C.      With a good ASV machine I am enjoying some of the best health I have had in the past decade. At 72 years this is great.

D.      I really enjoy a childhood thing, during the winter I can throw the covers over my head and unlike the old days can sleep all night under the covers as I do not run out of air.    

E.       Lastly it is a comfort to know NO bugs or anything can touch my face while sleeping.


Rich
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#4
RE: A deep report on sleep treatment
Supplier #2 has ResMed ASV lightly used for $1319, new 2480. I purchased a used s10 vAUTO for 800. It had 250 hours on it (1 month). Great to do business with and a great machine.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed 
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#5
RE: A deep report on sleep treatment
It sounds like the Respironics AutoSVs don't have a good reliability rating as the ResMed AirCurve 10 ASV. If you have to keep repairing and replacing Respironics machines, it sounds to me like it's time to switch to ResMed. I know for myself, the ResMed ASV has been very good on reliability. And a bonus is the ResMed gives better and more comfortable therapy for most users.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: A deep report on sleep treatment
Thanks, when I was offered a APAP I asked for a resmed, and after a week found I could not stand it for some unknown reason. I was told some people do not get along with them. Others do not like Phillips machines.

Guess I am a Phillips person.

So I am looking for a Dreamstation ASV.

Rich
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#7
RE: A deep report on sleep treatment
If you need ASV then why would you even think a Resmed APAP would work? It is more dynamic than other machines in its class including a capability for limited bilevel which is more likely to aggravate central apnea.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: A deep report on sleep treatment
Rich, you mentioned DIY. Are you a electronic/computer guy who can change operating systems and all that?
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: A deep report on sleep treatment
Yes, I do a LOT of stuff:


I am a Science Fiction fan, and worked in Hollywood as a Special Effect Prop Maker during the 80s. I still make props as a hobby and for a little extra income.


So my 72 years of being a Sci-fi fan, I have watched nearly every Sci-Fi show up to the mid- 2000s so out of all those shows I consider Babylon 5 The Greatest Show of them all.

I have been: A automotive mechanic, a A/C and heating serviceman, a door to door salesman, a TV repairman, and a TV and Movie prop maker.
 

I also have a life long history of changing my cars and everything.

Not the normal way, I learned early that Hot Rodding was 1) Not my cup of tea,

2) And a costly thing to do and often did not really improve the drivability of my car, and that 3) I was not all that into it.

I WAS into making my cars more like much more costly and often much newer versions.

This started when I was 16 (1964) and got a 1956 Studebaker Golden Hawk, which I did a lot of changes, swapped out the old Packard 352 with automatic for a rebuilt Studebaker 289 with a 3speed with over drive…Customizing the interior...put in bucket seats, a floor shifter, a center console and as I was in AZ added A/C.

I kept fixing up my cars, from a 67 Cougar XR7 to my Chevy vans ending up with my 93 Chevy Custom G20. Which will be getting a 383 engine built for MPG.

To a 2000 Mercury Grand Marques with I customized and drove for about 10 years. NOW to my moving most of the custom details with improvements to my current 03 Crown Vic P71.

I also am into improving a cars MPG…did a fair amount of work and testing on that poor 2000 Grand Marques, and did find a way to get her to 35MPG at 65MPH.

And I DYI nearly everything, I build my own computers, I used to turn the cases upside down to get the DVD drives lower for easy reaching, (no longer needed) .

I also repair nearly everything I can get into (TVs are no longer serviceable) I still said I can fix everything I own BUT an automatic transmission, and them I drop out with my own transmission jack and take in to shops when I get a pro repair.

For those interested in this part of my life, and or my work on cars and vans and other things like this check out:

https://www.facebook.com/richardacoyle7

And https://www.facebook.com/racprops

And http://www.racprops.com

There are a lot of details in my albums on my prop work and my cars/vans, and so on.

https://www.facebook.com/richardacoyle7/photos_albums?lst=100001458421405%3A100001458421405%3A1540148056

If the link does not work please go to photos then click on albums.

That should tell you a lot about me.


I am very close to building a special low RPM new 383 engine, and have i believe what will work very well as a MPG making engine, so I am updating this post.

https://www.facebook.com/richardacoyle7/media_set…

Rich


 
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#10
RE: A deep report on sleep treatment
More about Sleep Apnea:

First those silly system cleaners…they are not needed. Consider, a sleep machine is PUSHING air and a higher than normal pressure into your lungs, the system is operating at a positive pressure, there is NO way your breath and any germs can get anywhere past your mask. When you exhale the exhaust vents ARE on your mask, that is as far as your breath can go. So Clean your mask and or replace it often.

Second this is the best mask I have found….The ResMed AirTouch F20 Form Cushion system is the best sealing and wearing mask of all time.

Lastly I found my sleep mask straps were creating budges on my head. There were some on the top of my head and one odd one on the back of my head. It was the narrow straps causing them.

SO I fixed that problem by mounting leather spreaders to spread the load over a larger area, these are about 4 inches wide and from end to end of the strap, stapled to the head gear straps.

No more major budges any more.

Rich
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