HealingWell
Search Close Search
☰

Maintaining a Career with NeuroLyme

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/12/2018 4:58 PM (GMT 0)
Hello!

I've been a silent member of this forum for less than a year, but I have already read and benefited from many of the discussions. Now I am reaching out for some advice....

I'm under the care of a reputable LLMD and have been treating borrelia, babesia, bartonella and ehrlichia since June 2017 with very minimal improvement. I've unknowingly had these bacteria for over 10 years, and found out about them in April of 2017.

My symptoms are mostly neuro, the kind that feel like you are but a step away from being placed in a mental facility. I'm unable to drive, or go out in public at all. I've tried repeatedly to push myself and end up in the ER due to stroke and seizure type symptoms.

My dilemma at the moment is how to earn a living while sifting and shuffling my way through herxes and flareups. A common dilemma, I'm sure. I am very certain I can make a recovery adequate enough to go on living a normal life, it really is just a matter of time and effort.

I have a wonderful government job as an Analyst....requiring ultimate attention to detail, ability to meet last minute deadlines, and fast paced social interactions (these things use to be my forte). I was forced (by the symptoms) to go on disability in August 2017. My job is secure until August of 2018. I do not qualify for social security, I am told I am too young. I do not qualify for most Lyme grants, I am told I am too old. I am now trying to figure out how to financially survive should August 2018 come around, and I prove unfit to return to work.

For those of you who have found yourselves in this type of situation, how do you manage to go to work everyday? With or without neuro symptoms?

Did you lose your careers?
Did you start new careers that are more symptom friendly?

Do you have any suggestions that might make it more likely for me to achieve a return to work, with or without symptoms?

Thank you so much for your input!

-Runninheid
Posted 1/12/2018 5:05 PM (GMT 0)
Hi Runninheid! (love the name!)

An official welcome to you!!!

A piece of advice on applying for Disability - look to see if your state offers temporary disability - not from Lyme, but from your debilitating symptoms. And don't listen to those that are discouraging you from even trying for it. It has nothing to do with age, but with how much you have put into Social Security (ie, how long you have worked), and the severity of your symptoms. Again, it's not for Lyme disease, but for your specific symptoms that interfere with your ability to work. There are some good articles in the "new to Lyme" thread, I believe. If not, I can post some.

Personally, I was infected at the age of 7, and although I did my best to not only get through college, and get a career, it was not in the cards for me. I was back and forth so much with being bed bound that I couldn't hold a job long enough to do much. So, I've not worked much in my life, and I can't get into the workplace now, because I haven't worked in so many years.....unless I apply at Walmart. LOL. Not really my dream job, so I'm back in school instead.
Posted 1/12/2018 5:16 PM (GMT 0)
Thanks Traveler, I appreciate your input, and honesty.

Walmart is not an option for me either. It was actually in Walmart that I had one of my passing out episodes. No good!

I will look into State and Social Security options a bit more. I think I will just apply even though I've been told not to. See what happens. I've got until August...wish me luck!
Posted 1/12/2018 5:19 PM (GMT 0)
Always, the very best of luck!!!! Do be sure to read over your states qualification, and the national qualifications of getting disability so you know which symptoms might qualify and then go from there.
Posted 1/12/2018 5:22 PM (GMT 0)
Runninheid, when I got bit, I was a part-time bookkeeper. Boy was it hard to add. I had to run 3 totals to make sure I was right. I was so afraid of quarterly tax days. W2s and 1099's were so time consuming. I was fortunate that I was able to take my time.

My spreadsheets - I cringed every time I opened them for fear I would mess up a formula and have to "think" how to do it again.

One thing I found was that while working I was so focused on my work, that I hardly noticed my head pain, my ears ringing or being plugged. My knees probably were hurting, but the focus of work really distracted me.

I needed to work rather than sit around and do nothing but be on the computer looking for answers. I think it really contributed to my healing.

But, that was me and I was not chronic for years.

I don't know how I would have done a full time job. Probably FMLA, then temp disability, and then who knows.

It sounds like you are on temp disability. When it runs out can you do FMLA?

This has to be so stressful and here you are 8 months away and worrying about it. That will make your lyme so much worse.

This might be helpful, anyway I hope so. /www.disabilitysecrets.com/social-security-disability-lyme-disease.html
Posted 1/12/2018 6:15 PM (GMT 0)
PeteZa,

I feel the same about work providing a distraction from it all. I so badly want to work, as it is my confidence and passion in life to be useful. I actually struggled through the worst of my symptoms from April through August, utilizing FMLA here and there. I went out on disability because my boss and co-workers were starting to notice a decline in my work ability and quality, and at times they seemed very very worried about me. This told me it was time, I was no longer able to conceal all that was happening to me.

After using up all the FMLA, I am now utilizing SDI. I have one full year of SDI for life, then its on to other means.

PeteZa, quick question: Did you recover enough to work full time now?

Thank you!
Posted 1/12/2018 6:19 PM (GMT 0)
PeteZa,

That link was very helpful. I plan to fully explore all aspects thoroughly.

Thank you!
Posted 1/12/2018 9:22 PM (GMT 0)
Runninheid,

The term "neuro lyme" is sort of a catch all. People use it to describe anything that they believe has to do with the brain. But many symptoms that we believe are brain related can have other causes that are INDIRECTLY caused by lyme and co.

Also others use the term to describe central nervous system symptoms as well.

So if we are talking about cognitive abilities (or lack thereof) then I have experienced significant cognitive symptoms at one point or another with lyme.

So much so that it hampered my job performance, though it wasn't so bad that I would lose my job.

There's a neuro lyme protocol that I use that greatly improves cognitive function (for me, I can only speak for myself). This protocol provides me with a sharper, clearer mind and faster processing.

And as an analyst myself I can't be mentally sluggish or my performance suffers.

Let me know if you are interested.
Posted 1/12/2018 10:13 PM (GMT 0)
Hi Runninheld,

Glad you are not silent anymore! You received wonderful responses from caring people. Anyway, you wrote in one of your paragraphs:

"My symptoms are mostly neuro, the kind that feel like you are but a step away from being placed in a mental facility. I'm unable to drive, or go out in public at all. I've tried repeatedly to push myself and end up in the ER due to stroke and seizure type symptoms."

I understand your concern about working with all your symptoms. I was just wondering if you ever tried a product I used in the past that helped me when I had neuro problems which was Jernigan's Neuro-Antitox CNS/PNS Formula or Silphitrin (I'm have no financial interest in these products or any of Jernigan's products).

Silphitrin is also excellent to bind up ammonia and purges it out of your brain and body.

I bring up these products because when lyme bacteria die they leave toxins and the worse toxin is Ammonia. Ammonia can cause seizures, severe brain fog, and other neuro issues.

I tried putting a link in from the Hansa Center but that part of the site is down so I found this from his ex-wife Dr. Sara:

drsarajernigan.com/Silphitrin_more_info.html

Also, are you taking the time to take detox baths, dry skin brush, detox foot baths? When I first heard of detoxing I said to myself "what in the world does that have to do with lyme disease?".. I didn't connect the dots until I finally opened my mind and decided to try it. Wow, getting those toxins out of my body and brain did wonders for me!!

Just wanted to give you something to ponder...

Best!
Denise
Posted 1/13/2018 3:28 AM (GMT 0)
decarte3,

Thank you for explaining that term to me. I do mean symptoms of the brain such as cognitive insufficiency, brain fog, short term memory loss, random anxiety, and dramatic mood swings.

I am interested in more information from you about the neuro lyme protocol that you use.

Thanks!
Posted 1/13/2018 3:59 AM (GMT 0)
Deejavu,

I have never heard of the brain detox methods you mention. I have asked my doctor about ammonia build up and brain detox. I was told a lot of the brain detox methods don't work and the liposomal glutathione I am taking should be enough to detox my brain. I will bring these up with my doctor again next week and maybe be a little more insistent.

I will check out the link you provided. Thanks!

I have heard of the physical detox methods you mention but have never tried them. I always thought those types of detox were more for physical aches and pains, now I know better... I will add those in.

Thank you for your help and time!
Posted 1/13/2018 4:26 AM (GMT 0)
Runninheid, I healed from lyme and continued with the part-time work at the fire station as the District Clerk. I will be quitting that job this month. I am an editor for a handful of authors that are keeping me very busy now. I also have a Mom on Hospice that I am handling all her finances.

I retired from my teamster full time job in 2007 so I am an old lady that is super young at heart, with an awesome retirement. I was fortunate to have been not doing that job when I got bit or I don't know what I would have done.

I don't know how you people do it and I really feel for Moms that are sick and caring for children.
Posted 1/13/2018 1:43 PM (GMT 0)
I had symptoms for over a year before I was diagnosed and have now been treating for almost a year. I have 1.5 hour commute 1-way, demanding, stressful job and I'm a single mom. Before being diagnosed we took on a puppy!

I was able to get 2 work at home days. I already had 1, and a change in management encouraged me to ask for a second. Not because of lyme, because of the commute and the kids.

I often nap on the train - both ways. I sometimes close my door in the afternoon and take a nap. I have to read emails 3 times. Sometimes it takes me 3 times to be able to type a word correctly. But slowly, it has gotten better. I just had 10 good days and 2 bad ones. Progress. I've also learned to take a breath and count to 3 before responding, because I get moody. My manager knows I have lyme, and the people in my group. A couple of others, but that's it.

My LLMD also wants me to follow Dr Gundry's eating plan. I do feel better when I do it, but some days I just can't. Maybe that caused the slip the last 2 days - don't know.

I do things slower than I used to, but I was always an overachiever and now I've decided it's ok to do the minimum that needs to be done right now.

Mostly, I take things a day at a time because I know things can change quickly. So on the bad days, I move even slower and do as little as needed, and then I do more on good days.
Posted 1/13/2018 2:08 PM (GMT 0)
Hi Runninheid,

I'm happy that I was able to provide you with information that you never heard of before. I hope your doctor will take the time to research these supplements.

I found another article that may interest you:

davidjernigan.blogspot.com/2015/05/lyme-induced-leaky-brain-syndrome.html


PeteZa,

So sorry to hear that your Mom is on hospice. Sending prayers your way!

Denise
Posted 1/13/2018 4:55 PM (GMT 0)

Runninheid said...
decarte3,

Thank you for explaining that term to me. I do mean symptoms of the brain such as cognitive insufficiency, brain fog, short term memory loss, random anxiety, and dramatic mood swings.

I am interested in more information from you about the neuro lyme protocol that you use.

Thanks!

When you get a chance research nootropics. They are basically vitamin protocols for the brain and brain/CNS health. People whom are not ill and just want to have optimal cognitive abilities use it as well.

A lot of the symptoms we feel, other people experience but just to a much lesser degree, lyme tends to heighten and worsen these same issues in us.

One pre-made nootropic off the top of my head is Alpha Brain. You can google that to get an idea.

My specific protocol is Alpha GPC Choline (the compound found in foods that are considered "brain food"), Huperzine A (a natural plant - chinese club moss), and EGCG (green tea extract). DHA (fish oil) optional but helpful.
Posted 1/13/2018 7:00 PM (GMT 0)
Runninheid -

"nootropics" as a term came to existence in the '70's. It has somehow recently re-emerged and is some what of a new buzz word itself now.

Its an umbrella term for pretty much all supplements that have an effect on the nervous system - amino acids, herbs, vitamins - all of it. They are a "shotgun" pattern of stimulants and methalation enhancers depending on their ingredients. There are some great analytical sites breaking down some of the leading brands ingredients. I have used many of these individually with some success just to simplify my supplement intake. Plus I also tend to experiment individually with supplements for my gene coding - and a wide patterns shot gun approach just blurs what I really need.

Depending on your gene makeup- is why some do or dont work as well for the individual- this is just as true with non-ill people. However- all of the population is technically "ill" based on varying degrees of gene coding defects.

What interesting is Red Bull can have a similar effect in many people and is technically a nootropic beverage. This particular brand has less caffeine per ounce than black coffee- for real. The caffine in it works with the amino acid tuarine in it which cancels out each others negative effects. Then it has some other natural compounds with B vitamins. Very similar to some of the simpler nootropic "pre-mixed" brands.
Note- many of the other energy drinks have a LOT of caffeine and are NOT comparable. That said, I would not go drinking red-bull every day, as it has too much B vitamins in it and SOME people cannot process All of these correctly. "Cheap B vitamins" can build up in the body creating "lyme brain " like symptoms itself - anxiety, cant think, nerve issues, ect.

Rule of thumb, as always, pay attention to your body when trying these things. If anyone takes excessive amounts of B vitamins, you should have your serum levels tested. That wont say what your cell uptake is, but will show whats available in your blood.

BUT we cant forget the body is a whole system. The digestive-brain connection, (gut, liver, gall bladder included). And the endocrine - brain connection. Did you know that almost all supposedly "lyme brain" symptoms can also be the same as thyroid/adrenal endocrine dysregulation symptoms?

To many people in the lyme community assume they have lyme BB bacteria in there brain without any proof. Obviously some do, prob not that many.

Hope I didnt confuse you. Sometimes supplements are good band-aids, and sometimes we need them forever due to our genetic make up. These are not to be confused with herbs that eradicate pathogens.
Posted 1/13/2018 7:14 PM (GMT 0)
Runninheid -"stroke and seizure type symptoms"

This is extreme even in lyme land. Have you ever ventured into your genetic coding via 23andme?

Unfortunantly this can be confusing, BUT it can show predisposed gene issues which lyme can build on.

Example: I had a blood clot and this is seen in lyme sometimes more than with non-lymies.

It happened when I was most toxified at the end of ABX while combating candida too. I also could not detox well DESPITE what the lyme community said to use.

23and me TOLD me why. I am predispositioned to difficult liver detoxing (two gene copies=bad) and have several clot genes, but only one copy in these (half bad). Two copies is almost for certain. Lyme helped both of these become an unfortunate reality and a trip to ER. My regular Dr later ran conventional medicine gene tests on what I told them, and 23/me was correct.

We ALL have some malfunctioning genes. Lyme can make them worse. Gas wont start a fire, but its the perfect fuel waiting for ignition. Lyme ignites us in a bad way - thats what chronic lyme really is vs accute lyme. Its about how our genes and immune system (thats our genes too) react to it. Proof?: Some in the logging industry are pos for lyme, with NO symptoms.
Posted 1/13/2018 7:30 PM (GMT 0)
Career- I changed it for my health. The recession made my past career to up and down, cutthroat, stressful, wondering when the next layoff will be, who will buy us out, slash pay role for the shareholders ect- thats the norm today. I ditched it and simplified my life using my born with talents and not my two degrees.

Also- In my experience , smaller companies are less likely to say your "over qualified". You can have an easier position in a smaller company, but with more hats- which can offset some possible boredom. Sometimes pays less, sometimes more, you never know.

What comes around goes around. The day will come when degrees are overrated and natural talents will, again, be the answer. Its kind of happening to the Millennials right now. Of course AI can change this too.

That said, many here can find something easier with ties to their current or past job. Always good to have a back up.

If you have limited options, I hope you have some sort of flex time. I took many longer lunches alone off company property with the car seat back and my hat over my eyes. Power naps are great.

Post Edited (astroman) : 1/13/2018 1:30:32 PM (GMT-7)

Posted 1/13/2018 8:21 PM (GMT 0)
dacarte3- you had another more detailed comment on what you did for aka:"lyme brain"

Wanted to read that again, but can find that "nuero lyme" post again.
Posted 1/13/2018 11:10 PM (GMT 0)

astroman said...
Runninheid -

What interesting is Red Bull can have a similar effect in many people and is technically a nootropic beverage. This particular brand has less caffeine per ounce than black coffee- for real. The caffine in it works with the amino acid tuarine in it which cancels out each others negative effects. Then it has some other natural compounds with B vitamins. Very similar to some of the simpler nootropic "pre-mixed" brands.
Note- many of the other energy drinks have a LOT of caffeine and are NOT comparable. That said, I would not go drinking red-bull every day, as it has too much B vitamins in it and SOME people cannot process All of these correctly. "Cheap B vitamins" can build up in the body creating "lyme brain " like symptoms itself - anxiety, cant think, nerve issues, ect.

I agree. Sugar free redbull is actually not bad for you. A lot of vitamin B12. I actually like a sugar free red bull every once in a while.
Posted 1/13/2018 11:18 PM (GMT 0)

astroman said...
dacarte3- you had another more detailed comment on what you did for aka:"lyme brain"

Wanted to read that again, but can find that "nuero lyme" post again.

Do you mean specific comment or a certain thread?
Posted 1/13/2018 11:20 PM (GMT 0)

dacarte3 said...

astroman said...
Runninheid -

What interesting is Red Bull can have a similar effect in many people and is technically a nootropic beverage. This particular brand has less caffeine per ounce than black coffee- for real. The caffine in it works with the amino acid tuarine in it which cancels out each others negative effects. Then it has some other natural compounds with B vitamins. Very similar to some of the simpler nootropic "pre-mixed" brands.
Note- many of the other energy drinks have a LOT of caffeine and are NOT comparable. That said, I would not go drinking red-bull every day, as it has too much B vitamins in it and SOME people cannot process All of these correctly. "Cheap B vitamins" can build up in the body creating "lyme brain " like symptoms itself - anxiety, cant think, nerve issues, ect.

I agree. Sugar free redbull is actually not bad for you. A lot of vitamin B12. I actually like a sugar free red bull every once in a while.

Yep. So its not the sugar giving energy in this either.

If the B6 didnt build up from some gene problem, I'd still drink Red Bull. Now I just have on me at work for emergency purposes.

On that note; "Emergen-C" does NOTHING for me- again comes down to genetics. A co-worker swears by it and Red Bull does NOTHING for him.
Posted 1/14/2018 12:54 AM (GMT 0)
I downsized my dream house and live one mile from work-this allows naps at noon and me going to work for a couple hours sat and sun. Without money I would be dead so I treat it that way-my vacations are used for doctor visits. Money is a medication we all need to get well treat the job like your life depends on it. (unless you already have plenty of money)
Posted 1/14/2018 2:06 AM (GMT 0)
My new mission in remission is to put a hurtin on lyme, educate and help ....im back to computer work which is helpful brain is back and bvt
Posted 1/17/2018 4:02 PM (GMT 0)
Thank you all for your comments.

Lots of good information that I will be thoroughly researching. I am seeing my LLMD today (it has been two months since last we spoke) and I have added all your suggestions to my list. We shall see what his opinions are....

I also really appreciate you all sharing your personal situations. It helps me know that with a little tinkering, it is possible to have a career with neuro symptoms caused by Lyme!

-Heidi
✚ New Topic ✚ Reply