Well, I guess the forgetfulness and spaciness and brain fog is worse than I thought. My boss came to me yesterday and said that we have to figure something out, because it's not working like this. Basically, she said get better or get gone.
I'm completely freaked out. I know I've had worse cognitive issues in the last year than ever before, but I thought I was still coping.
So what do I do?
I just started low dose naltrexone - will that help cognitive things? I do feel a bit more clear-headed since starting it a week ago.
My job isn't rocket science. It's basically clerical work, and no one will die, nothing horrid will happen if I screw up, but my bosses will be annoyed. It is full time, which is tough with the fatigue.
I'm on Samento 5 drops a day/twice for the Lyme and a bunch of supplements - liver support, B, etc. My LLMD wants me to add artemenisin (sp?), lomatium, D3, tricyline, but I don't dare add anything right now until I get a handle on the cognitive stuff.
Anybody got any good ideas on coping mechanisms? Lists will help, but only if I remember to read them!
If they do let me go due to medical issues, do I have a case for SSDI? I actually think I'm not as bad as they are saying, but I've been sick and out a lot in the past year and they're annoyed.
I've always been able to count on my brains and it's really, really scary to feel like I'm losing my abilities.
Thanks for any suggestions, support.
Posted by ping (Member # 6974) on :
Denise - I worked full-time through all my Lyme hell so I sympathize with you.
Since I don't know why you're taking so many supps and only you do, maybe you should re-check for interactions that might actually be keeping you fatigued.
Another biggie for a lot of us is THYROID ISSUES ! Have you had yours checked lately? If so, you might want to post your numbers to folks here; they helped me a lot with this. If not, then you need to get checked right away and if there's any deficit, get the rx and get going on it.
My job was in such jeopardy; I can't believe I kept going while battling Lyme and Babs. It's so tough. Don't know what kind of email system you have, but if Lotus Notes or other that will let you set reminders, I'm sure you've already done that. It was a lifesaver for me. I had stuff posted every 10 to 15 minutes! I had to remind myself somehow... You know, "Write yourself a note to remind yourself to write yourself a note"! That's what it felt like...Awful.
Try not to freak (I know that's like saying "try not to breathe"!)
Hang on and don't let go of the rope!
Hoping the Best for you!
Posted by merrygirl (Member # 12041) on :
i am so sorry this is happening to you. Can you file for FMLA? you dont need to take 3 months in a row off, but you can take days here and there. I would say that if your cognitive disfunction is from a disease, they really cant fire you as it could be discrimination. could you change jobs within the company? do they know your sick?
Posted by ping (Member # 6974) on :
merrygirl is right! FMLA is a good option. I went on it for a year.
Posted by f13girl (Member # 23844) on :
Denise-does you boss know you have been diagnosed with MS? Are they not willing to cut you some slack? Are you eligible under the company for long term disability? Soc sec disability I don't think pays much and I think it takes years (but not sure on that) to win case. Wondering if you could qualify for long term disability for cognitive issues? Seems like you have a case if you mgmt thinks you have them.
Is the samento making the fog worse? Maybe eliminate it for awhile and see?
I am struggling with the same thing right now........
Posted by Florence1 (Member # 22960) on :
fmla is only for 12 weeks....after that by law your job is not protected, I am in the same situ except I havent worked since september...been on short term disability, soon will change to long term if I qualify......hoping that they keep my job for me but they dont have to.....I just cant do it right now.....memory, words, fatigue, pain etc etc.....good luck
Posted by nefferdun (Member # 20157) on :
Try some supplements. 200mg co enzyme Q 10 3 times a day, 1200mg Acetyl L Carnitine, 600 mg Alpha Lipoic Acid, Huperzine (not sure of dose), B vitamins especially B12(!)- maybe even injections of those which are cheap and you can give them to yourself.
Ask your doctor to start you on Armoir thyroid (or a compounded version). It is perfectly safe even if your thyroid function is normal because it does not add to what you thyroid is producing. Your thyroid quits producing the amount you are adding. You slowly increase your dose until you begin to feel better. Look for other hypothyroid symptoms like dry skin, brittle nails, dull hair, swelling in face, irregular periods, feeling cold much of time, low body temperature ( 97.8 or below) and weight gain and fatigue. If it is really bad you cannot concentrate, your eyebrows disappear on the outer edge and your tongue will show teeth impressions when you wake up in the morning because you tongue is swollen. You will also be irritiable and depressed.
Vitamin B12 deficiency and low thyroid have similar symtoms to lyme. Google it. And lyme depletes B12 and can wreck havoc on your thyroid. Addressing these things might help. You won't be 100 percent normal but you will be better.
Posted by DeniseNM (Member # 11182) on :
thank you all so much!
F13 - They do know I have MS/Lyme and that the cognitive issues are caused by that.
We do have long term disability, but it doesn't pay enough to pay my bills. Plus, I'm not really disabled, I just forget stuff more often than they like.
Neff - I know my thyroid is low, but every time I try Armour, my heart starts a-pounding. My LLMD said I may be allergic to T3 and T4. I think she wants to test for that, but I'm not sure. I have an email in to her.
I do take a B complex and an extra 2000 mcg of B12 a day, and I do notice that I feel a ton better with the Bs in me!
I will ask about the other suggested supplements.
Thank you so much. I'm so sorry there are so many others of you in the same boat. It's a pretty leaky boat, in my opinion!
Posted by Keebler (Member # 12673) on :
- Consult an attorney who is familiar with the Americans Disability Act (ADA). If there are any accommodations that could be made to make your job workable for both you and your boss, you can get advice such as formally declaring your disability in writing in your human resources file - with the HR director. -
I don't know your treatment history but Samento is not nearly enough to adequately address an infection as complex as lyme.
You will likely not beat lyme with Samento alone. Art. is not for lyme but for babesia and, still, is not enough alone for that. Babesia requires a combination approach.
You might ask your LLMD about treatment - I hope you will get what you need. You might also look to another LLMD who has more to offer for lyme than Samento. -
Posted by DeniseNM (Member # 11182) on :
Keebler - thank yoU! Last fall I had a horrible reaction to abx - either seizures or mini-strokes (TIAs), and then gastro issues, all of which lasted for weeks and caused me to miss a lot of work.
Because of that, that my LLMD wants to knock down the Lyme a little bit with herbs before trying the abx again. I am in agreement with that; I couldn't function for weeks after that. I'm surprised they didn't fire me then.
I do have a couple of friends who are attorneys and I will ask their advice, thank you, I hadn't thought of that.
Posted by TF (Member # 14183) on :
In order to qualify for Social Security Disability Insurance, you have to be totally unable to work and this has to be expected to last at least 1 year.
Since yours would not be a clear-cut case (like someone with Lou Gehrig's disease or dying of cancer), you will wait a few years for your decision and then it will be a denial. "Totally unable to work" means you can't even be a ticket-taker or sit at a toll booth. And, no doctor is going to predict that your "totally disabled" condition is going to last 1 year from now. They can't say that with lyme disease.
Then, do you know the amount Social Security would pay you? You probably can't pay your bills on it.
So, I advise you to forget Social Security and focus on getting your lyme doc to fill out the FMLA paperwork to give you time off to protect your job. Otherwise, it sounds like pretty soon you will not have a job.
In this economy, there are lots and lots of people who would love to have your job and they are not sick. The company knows that. And, from what you have said, they are tired of your performance. They are telling you what is going to come next. So, I advise you to do what you can to protect your job. Otherwise, you could easily find yourself on unemployment.
My background is in these subjects, so I know what I am talking about.
I had a friend who had to take 3 months off under FMLA to save her job. The lyme doc filled out the paperwork for her (for a fee).
Then, while you are off, you can do all the things the doc is telling you to do.
Have you considered taking antibiotics? I had undiagnosed lyme disease for 10 years before I found out what it was. Once I got to a Burrascano type doctor, I got rid of my disease. It has been nearly 5 years since I completed my treatment and I am still symptom-free, enjoying my life. I had lyme, babesiosis, and bartonella.
My friend went to a Burrascano type doc and during that first 3 months of treatment, she got so much better that she was able to return to work and perform satisfactorily.
She worked for a bank, and her forgetfulness was costing them money. They told her one more mistake and she was gone.
You have to take what they are saying very seriously. You have to really change something to try to be much improved by the time the FMLA absence runs out.
I know you don't want to take a leave of absence, but it sounds like the safest thing you can do right now. You have been given a warning and the next step is out the door.
Posted by Dancer (Member # 11039) on :
I was in your situation at one point - a performance review where I was told I was slow, in a fog, too much note-taking, forgetting I've heard things, etc. I was given 3 months to shape up or be let go. It was quite a shock for me. This was years before I knew I had Lyme. But what helped me at the time was antidepressants - improved my mental clarity and energy enough to keep my job. The Lyme would catch up with me and I'd have to up the dose to get the same level of functioning. But it got me by. Some Lyme experts feel antidepressants have an immune modulating effect and anti-microbial.
Hang in there
Posted by f13girl (Member # 23844) on :
Denise-did you brain fog get worse since treatment or something you've had for awhile? I know some claim buhner's recommendation of eleuthro ( not sure on spelling?)helps brain fog. I can't take it since it's too stimulating for me. My body seems to over-react to everything, but many on the buhner yahoo board says this helps their brain fog and is supposed to help adrenals Ask her your doc about it.
Posted by nefferdun (Member # 20157) on :
I agree completely with TF. You need to take some time off and do the antibiotic therapy necessary to get this under control. I would suggest IV especially while you have insurance (assuming you do from work).
I have had trouble with abx also but this time I am tolerating it pretty well. I can tell you from experience that the herbs advertized as a cure do not work even if you take 7 times the recommended dose! It is no wonder you are not getting better. I have probably $500 of various herbal remedies in the closet that did nothing and sent me realing into a relapse. These bacteria are serious, like MRSA. They are extremely resistant.
There are other thyroid medications - go to an endocrinologist. Some people react to the T4 but T3 (which is the active hormone that T4 is converted to) does not cause them a problem. Also when you first start medication it needs to be a very low dose. If you have the hormones in your blood and just dump a bunch more you obviously will be hyperthyroid until your own thyroid stops producing. That is important to understand. I have had heart palpitations too when starting any kind of thyroid medication.
Posted by f13girl (Member # 23844) on :
nefferdun-curious on if you know why you are now tolerating abx? I've had similar experience (only worse) since now in month 3 nightmare since stopping by first pharmecuticals followed by herbs. I didn't feel like I had MS before.. now I do.. non functional. It feels more like a flare than a herx since I've totally stopped sleeping (sleep meds not working )and have amillion neuro symptoms I didnt have going on before.
The neuro herx or flares are extremely frightening and disabling (not sure if I'm going to find my way out of this), so I know where denise is coming from.
Posted by map1131 (Member # 2022) on :
I had appt with a new chiro/intregative treatment person yesterday. We talked about brain fog and he told me it's all from sleep problems.
Everyone should be getting Stage 4----100 minutes every night. Typically people don't get this due tossing and turning due to pain in body, you snoring or spouse snoring, white noise and everything that can interfer with the minds ability to sort through everything and calm down to go into the deep sleep.
So Denise maybe it would help you to focus less on some of the other things you are doing and focus more on quality of your sleep. See if that helps the old thinker during work hours?
Pam
Posted by lymeinhell (Member # 4622) on :
Get a bottle of Peppermint Oil and take it with you to work. Put a drop on your finger, cup your hands over your nose, and breathe deep for 60 seconds. It wakes your brain up, and I do recall seeing studies to prove that. If you get the droopy eye thing after hours at a computer, put a drop above each eyebrow and that will refresh the eye muscles.
Not pitching or selling, just recommending one of the many tools I used during my treatment and recovery.
Of course, it may be easy to find Peppermint Oil at a local health store. Make sure it is ok for topical use before you buy it.
Young Living also has a few great blended oils that I used to break the no sleep cycle. Got me off Ambien the very first night. PM me if you want more info.
Posted by Lymetoo (Member # 743) on :
Just ran across this today at Vitamin World. Sounds really good!!
[ 02-14-2010, 06:20 PM: Message edited by: Lymetoo ]
Posted by DeniseNM (Member # 11182) on :
THanks, all!
The brain fog is a lot less with the 1 mg of LDN I'm on right now. I think a lot of the problem is just things slipping out the holes in my brain! And there are plenty of holes (lesions), unfortunately.
I do actually get pretty good sleep with my Lunesta. I go to bed around 9 pm, lights out by 9:30 or so, and stay there as long as I need. I usually wake up with the light, right now around 7 am, so I'm at work on time.
My one LLMD suggests that methyl B12 injections may help, and a product from Pure Encapsulations called Cognitive Aminos.
I will check out the peppermint oil, that sounds nice!
F13girl - hang in there! I'm going to!
Posted by seibertneurolyme (Member # 6416) on :
Denise,
You mentioned possible seizures or a TIA as a reaction to antibiotics. Has anyone suggested that you try lumbrokinase or systemic enzymes such as Wobenzyme or Vitalzym? My guess is that you probably have hypercoagulation and this may be part of the cause of your brain fog.
I do agree with Keebler that the herbs you are taking are not enough to get rid of Lyme and company.
It sounds like you are between a rock and a hard place as the saying goes.
But TF is not entirely correct -- people with Lyme can and do win social security disability. It is partly a matter of knowing all the ins and outs of how the system works and partly luck as to the judge or test results. But it usually is a long and difficult fight.
But of course as you have said about long-term disability -- the payout may not cover your bills.
I don't know your family situation, but my suggestion would be to sit down with anyone involved and try to come up with a reasonable plan.
I don't think it is realistic to assume that taking 3 months off and treating with antibiotics or making whatever changes you can will improve you to the point of protecting your job. For some people it could take 6 months or a year or even longer for significant improvement. There are so many complicating factors.
Have you ever had a brain SPECT scan? If not, then I think that would be very beneficial while you still have insurance. A SPECT could give you a better idea of how bad your situation is medically.
Don't know much about the M.S. drugs you are taking, but I am sure that complicates matters greatly.
Hope you can figure out a plan going forward.
Bea Seibert
Posted by DeniseNM (Member # 11182) on :
Thanks, Bea!
Yes, I am on nattokinase.
I agree, 3 months would probably not be enough time to get the disease beaten into submission enough.
I have an appt. next week with one of my docs, will ask about a SPECT scan. My insurance is really good and will cover all labs/tests.
I will be talking to my folks this weekend. Not that they can do anything, really. I'm here in NM, they're in MN and do not need to be taking care of me at their age.
It's really weird that this is coming up now - I honestly feel better mentally than I have in many months. Whether that's due to the LDN or the nattokinase, I have no idea, but I'll take it!
My boss re-iterated today that they are more than willing to work with me to get this sorted out. I've started making many to-do lists and copying her on EVERY single thing I do. But there's no guanantee that I'll feel like this for long. sigh.
thank you all!
Posted by Lymetoo (Member # 743) on :
Yes, B12 helps me!
Posted by Pinelady (Member # 18524) on :
I would be building a case for SS just in case you do not get better...Get copies of everything
and make arrangements to get testing like spect to prove your case. I went from being let go to
completely disabled with no one to rely on but my LLMD. As my reg. doc chose to send in info that
just showed xrayed wrist for a fall, when I had been to him for flu, dizziness, numbness and
tingling, asthma attacks, lung nodules, asthma again, bone pain, severe bone pain, that is at
least 10 visits and he sent in xray elbow for fall...
this after telling him to put me in hosp crying I
hurt so bad. I got a diagnosis of depression and
vitamin D deficiency.Protect yourself now. I
would even consider
having a EEG/EMG just to prove brain dysfunction. You deserve it.
Posted by lymie_in_md (Member # 14197) on :
A couple of herbs to consider, you just make tea with them. Gota Kola and Gingo Biloba, drink them an hour before you need to perform. You might try drinking a couple of cups a day. This can be done with all the prior suggestions that were made.
To add to the peppermint oil, there is an essential oil made by Wyndmere called "mentally sharp". You could google it.
Good luck!!! Posted by Cass A (Member # 11134) on :
One thing that has really helped me just recently with the thinking situation is ACTIVATED CHARCOAL. I'm taking 1 gm or more 2 hrs after eating.
There's been a noticeable improvement in just 2-3 days with this.
Since you're treating, toxins are being released in the body and brain. Not good for thinking!!!!
Before this, what helped me the most was Babesia treatment (I tested positive for Babesia). However, that took a long time to really improve (9 months or more).
The Activated Charcoal has been the quickest change in the mind department I've had since I've been treating Lyme (since 2005--started with herbs.......)
There've been a couple of threads about Activated Charcoal here in the last week or two. I'd recommend them! Do a search here at Lymenet on "charcoal."
Hope this helps!!
Best,
Cass A
Posted by Beachinit (Member # 21040) on :
I do not smoke but I and others with TBD have been caught sneeking nicorette chewing gum to improve cognition while at work. Would not use if have you have ever been cigarette addicted in past though. Nicotine and its metabolites are being studied for alzheimer's and ADHD with some promising results but again the caveat about dependency applies. One study applied and removed a nicotine patch daily and avoided addiction problems but that was a fairly short 3-4 month study for ADHD. Another potential problem is jaw muscle tightness from chewing the gum.
Novel approaches to nagging problems
Beachinit.
Posted by DeniseNM (Member # 11182) on :
you guys are great!
I have activated charcoal and will start that today, you are right, Cass, I'm probably not detoxing well at all.
And I think I can get the tea and peppermint oil here in my small town, so I'll do that today, too.
THey're never going to believe it's the same me next week! :)
Posted by seibertneurolyme (Member # 6416) on :
Denise,
Since you are in New Mexico, if you are into alternative medicine then you might consider seeing the doc in the following article.
Or at least trying some of the food suggestions couldn't hurt.
I was searching for something and just found this link a few days ago, so haven't tried any of the suggestions.
Bea Seibert
Posted by map1131 (Member # 2022) on :
Denise the chiro told me that sleep studies found that people think they are getting good sleep, but they are not. Sleep aids or not, Stage 4 is missing.
He told me even with me taking Ambien CR he graunantees I'm not getting my 100 minutes of Stage 4 sleep.
Pam
Posted by DeniseNM (Member # 11182) on :
Pam - I didn't realize that about sleep aids. I take Lunesta. I have an appt. with one of my LLMDs on Tuesday, will ask about alternatives.
Bea - I will also ask about that Dr.! He probably knows her or at least knows of her, as he lived in Santa Fe for years.
Thanks again!
Posted by Cass A (Member # 11134) on :
I'd watch it with the psychotropic meds--they have horrific adverse effect profiles, including homicidal mania! Most of the mass murder/suicides of recent years have been people on psychiatric drugs.
You've got lots of positive suggestions here for easily monitored handlings that are natural. I'd go with them--trying one at a time, if possible to see what actually changes things for the better.
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