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Posted 3/20/2021 12:32 AM (GMT 0)
WalkingByFaith,

I definitely empathize/sympathize with you about Multiple Chemical Sensitivities (MCS). Mine started in the military, around 1987 or 1988. It began with no longer being able to wear cologne and got progressively worse over the years.

One of the various triggers for my previously-mentioned migraines is chemical exposure -- the smell of colognes/perfumes, gasoline, diesel exhaust, dryer sheets, air "fresheners," scented candles, soaps and laundry detergents, even the exhaust from a clothes dryer vent, and more.

These things always make me nauseous and dizzy, no matter how brief the exposure. They often trigger a migraine, too, but not always. It depends on other environmental factors such as light, heat, humidity, etc.

Anyway, I can't imagine how you lived in your car for 11 months. Even with a bed, I have trouble sleeping. Then, your recent flare from trying to do something helpful by vacuuming your car to keep it clean. I'm truly sorry for the ongoing assaults and difficulty in breaking the cycle.

As "1yrinVA" suggested to me, have you applied for Social Security disability? Based on one of your previous comments, it seems you're likely living off emergency/retirement savings. If true, I'd hate to see you spend it all. I worry about that for myself, as I don't have that much. I believe you're a couple of years younger than me, so we both have a while before we reach "official" retirement age.

Best always,
Dude
Posted 3/20/2021 2:31 AM (GMT 0)
Astroman,
I have used the Instant Pot several times now and finally decided to get a Vitamix blender so I can make green smoothies again. Last year when we were getting ready to move, I redeemed my credit rewards for some gift cards. I got a Best Buy gift card, intending to buy a tv with it. I finally used it to order a Vitamix today, as Best Buy has them.

1YrinVA,
Oh, dear! I hope I haven’t discouraged you. I have been here several years now, and I can assure you there have been members who recovered quite well following Buhner’s protocols. I am really the oddball, so please don’t get discouraged because of me. The herbs definitely helped me get as far as I have, and I plan to get back on more herbs to help myself.

Dude,
Thank you for your compassion and know that it is reciprocated. I was a Federal employee and was able to retire on disability. I was without income for a year I think before it was approved. I hired a lawyer to handle it, because I was not capable. That cost me $6k but was worth it. I was required to apply for Soc Security but not required to be approved for it. I was denied Soc Sec. They said I had no disability other than hearing loss. I am very thankful I got the disability retirement, but it is only 40% of my salary. The first year was 60%. Yes, I have quite a few years before being normal retirement age.

I loved my job, and had planned on staying until retirement, but I was declining to the point I couldn’t keep up and was having trouble comprehending things and other cognitive issues in addition to a host of physical ones.

The cognitive decline actually started some years before I got super sick, but it was a gradual thing that I could feel and notice but had no idea what was happening. I remember thinking, if I have this much trouble now, how will I ever make it to retirement. Once I got sick with a respiratory infection in 2015, I went off the proverbial cliff and the decline progressed quickly at that point. I still worked another 24 months from that point forward. I still don’t know how I made it as long as I did.
Posted 3/20/2021 4:06 AM (GMT 0)
WalkingByFaith -- If you can get a NeuroPsych Evaluation that shows a measurable cognitive decline, you can qualify for Social Security Disability!
Posted 3/20/2021 1:11 PM (GMT 0)

GreenBeans said...
WalkingByFaith -- If you can get a NeuroPsych Evaluation that shows a measurable cognitive decline, you can qualify for Social Security Disability!

They did that. I answered whatever questions that psychologist asked and took a standardized intelligence test. That interview and test did not reflect the problems I have. I did not try to get approved. I was conservative in my responses because I did not want mental illness on my record. I have never been diagnosed with any mental illness and have never been to a psychiatrist or psychologist. (I have only told my current Lyme doctor about my real psych symptoms.) I guess even cognitively impaired, I am probably more intelligent than a lot of people.

As for retirement, I only had to be unable to perform my job or another position of the same level. I was not able to perform at that level or work in that moldy building anymore. I worked at home for 6 months, but I didn’t perform well with that either. For retirement, they accepted my doctor’s documentation. My primary care doctor who has been my doctor for over 11 years provided the necessary documentation.

Social Security isn’t like that. The only way I would have a remote chance at that is if a mold or Lyme doctor was willing to fight for me (neither doc I saw will even fill out paperwork for disability) and a lawyer who has experience with those types of illnesses that are not conventional - CIRS, MCS, chronic Lyme.

I have no desire to put myself through that level of stress or trauma to be gaslighted by bureaucratic people or to be enslaved to a bureaucracy who would then have more oversight and management of my life.

I do not usually look handicapped, though sometimes I do. I do not have the same level of disability every day or all day. It fluctuates depending on how many spores and mycotoxins the mold is pumping out in my house, what other environmental toxins float by, what treatments I did yesterday or this week, whether my immune system is humming along or hits the slightest bump, what’s going on with my gut, how well I slept last night, etc.

I do still get a lot of psych symptoms - crying, wanting to die, hand flapping, wanting to climb out of my skin, fits of yelling, irritability and meanness. Usually always correlates with toxin exposure - either external or internal from gut microbes.

Post Edited (WalkingbyFaith) : 3/20/2021 7:33:30 AM (GMT-6)

Posted 3/20/2021 2:38 PM (GMT 0)
Thanks for the reassurance, WalkingbyFaith, and sorry, it's not really fair to compare since we are all different. I know my treatment will either succeed or fail based on my own specific circumstances.

I have seen huge improvement in the past year just not sure how many more months/years would be needed on my current protocol for full remission (if Bartonella is in fact still the main driver of my remaining symptoms).
Posted 3/20/2021 3:28 PM (GMT 0)
Well, after reading these previous posts, I should be counting my blessings and not whining about my situation.
I have been fortunate to have a supportive spouse who doesn’t complain about our finances going down the tube because of my lack of working for 5+ years.
Although things were kinda tense for awhile when he was recently off work (due to bullying in his workplace) for a year.

I haven’t done much “extra” as far as treatments go though - mainly abx and some herbs

I can now see the light at the end of the tunnel as I am finally able to work.

WalkingbyFaith and Dude: My heart goes out to you - and hoping for your situations to improve soon!
Posted 3/20/2021 3:44 PM (GMT 0)
Thanks, Girlie. I hope WalkingByFaith can get things turned around, too. I'd like to see her get to a final and successful resolution, after all she's endured.

I'm glad to hear things have improved for you and you're now able to work. I recall reading a little about your transition back into the workplace and the challenges you faced. I imagine that was a tough transition and I hope you've adjusted well and find yourself continuing to improve and handle more and more.

Were I to see "a light at the end of the tunnel," it'd probably be an oncoming train!
Posted 3/20/2021 5:35 PM (GMT 0)
The neuropsych testing is NOT about mental illness, nor about how you feel. No psychologists are involved. Nor is it a 'standardized test'. It's a day long series of scientifically devised tests that include memory, matching, and a huge number of other things I don't remember because my brain wasn't functioning correctly at the time and it was a long time ago - 2002. The report they provide is about 15 pages of text. They give a summary at the end that translates the cognitive loss into IQ points for a quick and dirty summary of whats happened. They compare to your previous education level & scores then, your work experience, etc. Mine at the time showed a HUGE deficit, like a 15 IQ point drop. Happily my disease went into remission and I have regained to about 95% of pre-illness cognitive ability, but my point was that this test really proved to SSD that I qualified and I received some money that greatly helped me while I was so non-functional. I didn't find it stressful at all, on the contrary, it was a relief to know I had testable/provable issues and I wasn't imagining it all!!

That said, you do what you feel is right for you, but SSD is available.
Posted 3/20/2021 8:02 PM (GMT 0)
Walking by faith and green beans - , In my deepest a bit of lime and cognitive in ability, I’llhad a two day test , about six hours the first day in three or four the next day, does sound very similar to what you had.

It evaluated all different ways on how the brain works. All types ofMemory including physical shapes,,Problem Solving pass history of where I lived in the country I live in ect . This was compared to average people of my age and based on intelligence required to get me where I got throughout life , Past achievements etc.,snd my past schooling. And then placed me in the level where I was at that moment which was much lower. It was extremely thorough. My brain was absolutely fried, And the test showed it.

I wish I remember the test name , there was some sort of standardization with it though and parts of it were actually used or taken from US armed services testing.

I don’t remember if it was a psychologist or a psychiatrist that performed it but he was Lyme literate.

I have course still have the report it’s about 30 pages long.

A general practitioner gave me a prescription of sorts for this test, And health insurance covered part of it.

Post Edited (astroman) : 3/20/2021 2:15:19 PM (GMT-6)

Posted 3/21/2021 1:54 AM (GMT 0)
GreenBeans and Astroman,

Thank you for sharing the details about that test. I will keep that in mind. That was definitely not what I had. Mine was about 1-2 hours. I must have had the screening version to see if I should have further testing. I guess they decided I was not impaired.

Post Edited (WalkingbyFaith) : 3/20/2021 7:58:38 PM (GMT-6)

Posted 3/21/2021 4:24 AM (GMT 0)
GreenBeans,

Thank you for all the information you kindly shared, regarding Social Security Disability. I've not applied for it, either, for some of the same reasons WalkingByFaith cited -- especially my belief that it would be an uphill battle.

However, if I don't do something, I'll exhaust what little retirement savings I have remaining and then I'll really be up a creek without a paddle.

From what I understand, Social Security Disability is taxable and the amount that people receive (if approved) is based on a complex formula that includes the person's last 10 years of earnings. With three years of not working, those years with $0.00 income would really drag down my average.

I also understand that people who are approved for Social Security Disability must get recertified every so many years, depending on their condition and its severity.

Have you any guidance for an average person like me who knows virtually nothing about the process? That is, are there any online resources you trust to guide an uninformed person through how to get help from reputable and trustworthy people?

Either way, thanks again.

Dude
Posted 3/21/2021 2:12 PM (GMT 0)
GreenBeans,

I hired a lawyer who did nothing but disability retirement for Federal employees. One thing he stressed was that it was imperative to have a supportive doctor who would provide the necessary documentation.

Is Soc Security the same way, or do they only send you to their doctors who make all judgments regarding your abilities?
Posted 3/21/2021 5:11 PM (GMT 0)
SSD is taxable only if it puts your total income up into taxable range, which in actuality rarely happens in disability cases - in retirement cases a person may have passive income which may put you into a taxable range.

If memory serves, the amount is not the most recent 10 years of employment, but the highest earning 10 years of employment. You can go onto the SS website and see what your estimated income at full retirement would be -- that's approximately the amount your disability will be.

SSD does require you to answer a fairly short questionnaire every few years -- it depends on if you are determined to be permanently disabled or not. I had to to the questionnaire once, maybe twice, since 2002. It was short and simple and then they quit asking me about it.

I did have a supportive doctor, but I don't recall if that was for SSD or for a private disability policy I was doing paperwork for at the same time. I do know SS sent me to a couple of Drs, but I don't recall what kinds they were - I neither over- nor under- emphasized my condition. I do recall I answered not what life was like on my best day, but more of what it was like the worst or almost worst day -- 'cause at that point I was certain it would only get worse. That was advise I read about online somewhere.

My mental processes were compromised while I was applying, I was quite sick, and I did it all without any attorney's - SSD does tend to take a long time. Just go to the SS website, download the forms, fill them out as completely as you can... expect to be denied, appeal, that might be denied, appeal again will put you in front of a review board (they call it a judge) ... at that point I was approved without further issues. Check average times in your area - in 2002 it took almost 3 years in Georgia, some states are MUCH quicker. I think Covid-19 has slowed down the process. It can't hurt, doesn't cost anything, and may get you some money you can use to help your living situation AND your health.

Good luck.
Posted 3/21/2021 7:00 PM (GMT 0)
GreenBeans: Thank you for taking the time to share your knowledge. I appreciate your kind assistance.
Posted 3/21/2021 7:09 PM (GMT 0)
WalkingByFaith:

This morning, I listened to the following podcast episode and it made me think of you:

https://www.phoenixhelix.com/2020/12/11/episode-163-best-of-dnrs-with-annie-hopper

Here's a cut-and-paste from the written transcript (emphasis mine):

Q: What types of conditions have been helped?

A: Post-COVID syndrome, fibromyalgia, chronic fatigue syndrome, chronic Lyme disease, multiple chemical sensitivity, irritable bowel syndrome, mold toxicity, chronic inflammatory response syndrome, mast cell activation, food sensitivities, chronic pain, mental health issues, and more.

Are you against trying DNRS, The Gupta Program[/url, or Brain Harmony?
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