Lyme and difficulty handling emotions brought me to a place where I was rated inefficient and ineffective with no pay raise in my performance review with a new supervisor. Things became so toxic, my lyme was getting worse from daily stress I gave hr (no help whatsoever) and my supervisor 1 day notice. I am supposed to return to this dept july 24th. I am still sick fatigue is the worst symptom, but I need guidance on next steps. Trying to find legal help. My only option to return to work is to apply to TDI and work out a schedule of weeks and hours thAt ramps up gradually within a limited time period. HR is not responding to emailed questions or calls. I am still getting flares of fatigue and shakes among other symptoms. There is no way I can handle this stressful job and environment if I am still sick. HELP!
Hi Flops,
So sorry to hear about your situation. I had to quit work and school due to Lyme and the fatigue, shaking, neurological problems, Thank you for sharing about your situation. Some thoughts I had:
Are you in a union, and if so do they provide legal? Perhaps you can make an appointment with your HR rep and ask what your options are. I think some states have protection for workers who have to quit because of illness. Are you in treatment? You will need very good medical records if you will apply for disability. I am in the process of applying and they go through your life with a fine toothed comb. If you contact your local social security office they can give you an 800 number to find legal representation in your area for SSI. The reps are free until/if you win your case but the process is very long.
Hope I could help a bit, good luck to you!
Hi Flops,
Good info from slmo, and I'll add to check to see if you have short and long term disability though work, and if so, apply right away. If you have it, you paid for it. Your Doctor can also be a great source of help to you here, and if not the actual Doctor, one of his nurses or other employees.
I wish you well and hope others offer some advice, so sorry this is happening to you. I've already been through it!
Hi Flops,
I feel for you! It is such a hard situation to try to make it work. I was advised by my supervisor to seek FMLA (Family Medical Leave Act). This allows you to take unpaid time off but protects your job. I did that through HR. I know it is frustrating, but remember to listen to your body, and give it what it needs:) Sounds like your supervisor needs some education on Lyme Disease maybe? Would he/she be more understanding then?
Thank you all for responding so quickly. It really helps to have an online community support…i don’t when you don’t feel so alone. I have used up all my 12-13 weeks. I am supposed to return to work next thursday, the 24th. I actually heard from an atty today who I will see on friday for a free consult. Timewise, that is pushing it, but he responded so quickly (referred by a former hr specialist) and at this point in I am in dire need of clarity on which option would be best.
Flops
Dear Dkel and all,
This information is helpful and will help me generate better list of questions.
I’m going to get a Western blot so that we have up to date record that lyme is there. My lyme doctor said I need to start I.v. Ten months ago I got a live culture which grew in 8 
days vs 8-10 weeks. Are there there anyone else who has gone through those procedures?
My position is in every dept, but we are only “group” that does NOT have a union. They use a merit system for each of the divisions and the newly developed performance management review.
Well the intense clouds (three days now) finally dropped the rainstormand a number of symptoms subsided. I do get sick on sunny days too, but intense storms take over my body.
Today I have to go to a deposition for a.car accident that is five years and counting… Thank goodness the storm released some of its load this am. More rain on the way…
Thank you for all this great info and appreciate the details. Boy, I haven’t really engaged with the outside world, and boy I saw how badly the lyme impacts my life. The deposition didn’t go well. I felt like I appeared to have had a labotomy. Im having a hard time not taking…cannot remember what I was gonna say.
Hi Flops,
Everyone has given great advice here! I agree with lyme? regarding documentation for disability. I am in the process of applying for disability now, and keep a daily pain/symptom log as well as copies of all my visits with doctors, specialists, etc so I can make additional copies for new doctors and for SSA as needed. It is a real pain to try and get records released over and over- I carry mine in file folders and take them with me to appointments. And as lyme? said make sure you get all possible ailments listed in your records...Lyme is not in the SSA list, but may fall under inflammatory arthritis. So be very detailed about where pain is and if you can get additional ills diagnosed correctly that will help your case too. For example I am diagnosed with fibromyalgia, chronic fatigue syndrome, anxiety disorders, migraines and osteoarthritis- in addition to several positive Lyme western blots. All of that is being presented by my rep for disability. I highly recommend calling the SSA 800 number in your area for a list of reps because it is very difficult to win with Lyme alone. I have been fighting for several years because my last case was denied.
My western blot came out negative. I left a message for my doctor. This cannot be true if I recently had two flares, one that lasted a week, in bed, in pain, no sleep, shakes etc. I went to see her that day (they took me right away). Its been said that some of my anxiety has to do with going back to a toxic if not hostile work environment. Admittedly, I have anger issues and while on leave was working on them intensely. 10 months ago I went off antibiotics for over a month, they took a live culture and what should have taken 8-10 weeks showed up in 8 days. Because I have requested an extended leave, my doctor had me get tested for Western blot. NEgative results. How can that be? I read somewhere on this site or another that there are other tests that can be taken to identify the lyme immediately. Any suggestions? If I had not requested extended leave, I would have to go back to work tomorrow! My gut tells me that they will manage me out if I go back full time. I left without a review. All I got was negative verbal feedback from supervisor and HR. To an extent it was true; the disease was really messing with me and the quality of work. So I am "ineffective" and no pay raise. If I go back, I have to follow this program to get me from "ineffective" to "effective". My colleague now has my job, she's better at it, and frankly I don't think the department cares. Really even after five years. They just want the young, mac maven, can do anything 23 year old. Besides, I have to exercise, which I stopped doing for months because of my fatigue.
The Lyme tests are known to be unreliable, if you have ever had a positive, then you were exposed and potentially still infected. I do not know any other way to get a specific test that to go to Igenex- they are a specialty tick lab that tests for all the strains not just the CDC bands. A lot of factors can affect your test, like how long you have been infected, whether or not you are in treatment, or even stress. Was your ELISA positive? It is very frustrating to get tested for Lyme because the tests are unreliable and invalid for many people so I suggest going to a tick specialty lab. You will probably have to pay cash unless your GP can get your insurance to pay for the specialized testing. As well, Lyme is a clinical diagnosis regardless of what testing says. So if you have had all the symptoms and told you have Lyme from those symptoms then there is a good chance you do. Let us know how it goes...
My nrssage isnt good. My lyme doctor who is supposed to be one of the best called me TONIGHT to tell me she was going out of town knowing the test was negative. She actually had until august 4th and I even asked the office if anyone was going away to please let me know. I already told hr last week, they sent her and me the letter last week. Did not get western blot test results til today. So, not only will her letter be not convincing, ill lose everything in one day because she is faxing everything tomorrow. She had asked before.that my psychiatrist schedule another neuropsych test and my psychiatrist dud not think much in the te report had changed. Why didnt my lyme doctor order s workup instesd of the blot snd.hss now left me at the mercy of the hr dept. Im freaking out a bit.
I am so sorry you are going through all this Flops. I can't think of any solutions other than to continue and go through the motions of trying to get a workup- you may even have to switch doctors if the one you have is sweeping your case under the rug. A second opinion never hurts...and I had to go through half a dozen docs before getting one to take me seriously. I know it is a hassle but it is better than giving up. NEVER give up! your health is very important and if we are right and you do have Lyme you will require treatment and help sooner than later. Many of us have had to go through the same thing so feel free to vent here!
How do you apply for FMLA? My drs don't think I'm "bad enough" to qualify for (physical) disability (and I'm thankful for that), but right now I KNOW need to take some time for the "anxiety side" of my illness - how / where do I start? What kind of dr do I see and what do I say?
I can't imagine walking into a drs office (or worse yet - my employer's office) and saying that I need to take time due to anxiety. Sorry to be so direct/ crass about this, but my mind is on fire, I feel like I'm going to explode, sometimes I even wonder if I'm having a stroke because the neuro symptoms are so bad... could this all be in my head and not even "real"? I just know it's so hard to keep pushing on.
I am so sorry to hear this news, I'm not in the same situation, but am getting close and it's awful. I have found that journaling (actually, I type on my laptop because the pain in my hands makes it hard to write... but on "good" days, I prefer to write, it makes the experience better!) can help me explore the crazy feelings and somehow, sort of help me put the pieces into some sort of order... I can't say the RIGHT order, but it helps provide a bit of structure when it feels like everything else around me is falling apart and I'm in free-fall mode.
As you can tell, I'm late to this thread, and am reading my way through. I hope you're doing well and that you've found a solution. Please keep posting, we care.
Hi Flops, how are you doing? Where do you start with HR? What the next steps? Can we do anything to help you put your plan together?
Hi all. I want to apolohize for my ranting and rabing the other night. It was all fear based and I really could have leaned on faith. I got to see the letter and my doctor knew exactly what she was doing. Why would I doybt her when she has literally saved lives. I finally got approved for the std l applied for 13 weeks ago. However, my employer has to pay me. Not sure how long will take.The hr at the school may ask for more lab work, and I havent had a test since live culture and the negative results of western blot. I am calling my financial adviser and revieeing the obamacare options. I still have benefits until they make a decision. Toniggt I met someone in my womens group who after many years treating lyme with antibiotics…I forgot the symptom and she got deathly ill and was disgnosed to have celiac. Ill keep you posted.
Hi Flops,
Never need to apologize for venting! I for one know how frustrating it is to go like you have been. Sounds like you have positive results with the doctor and the HR department at work? That is great news! keep us posted about the healthcare too!
Im still not navigating this site well, but I think lost girl had a question about filing for fmla. “Not sick enough” is an ignorant tesponse. Some lyme sites, I think this one does too, have a directory of doctors or practitioners. Besides trying to find a specialist who will do a full specislized blood workup, I would start logging your symptoms every day (someone on this thread suggested it ) snd its impact on your performave,I wish I had.done that from the get go 2-3 years ago. My symptoms were aggrivated because o a challenging relationship with my new boss, it got so bad I thought I woukd have a nervous breakdown if I didnt leave. Aafter speaking with orhers and if you van get referrals, if you can no longer work and be sick. Have the dictor who knows your situation and supports you send a fax to hr stati.g symptoms etc . You have to let hr know by phone from home and that your dictor will fax a note. They will ask for labwork, tests etv your dr will need to send them. Then I did not come back the next day. Its svarey and I will Never trust an hr dept ever. There is a site online about fmla and it will be critical that you thoroughly understand the company policy on applying. Also it is max of 13 weeks.I apply to tdi and short term disability if you have been paying into those benefits through work (look at pay stub.)
I dont know where you live but talk to friends and family and online communities like this one. People here very knowledgeable and …have lots of experience. Dont give up and try to take it one day at a time.I wish I could be more helpful because everyone ones experience is different.
Best to you
Flops
Responding to lost girl ot someone else’s request for infp on fmla…
I broke today. I couldn't do it anymore and called in, saying I had a medical emergency & was on my way to the dr (which was true), between my illness(es) and all of the meds, the nurse practitioner (my dr doesn't work on Fri) advised that she agreed, the anxiety was too much for me and I wasn't functional - she couldn't sign off on the FMLA paperwork, but she'd talk to my dr (note: this is my primary care dr, I haven't seen her for over a year, but she has all my records and knows about lyme/ seizure history). They connected me with a counselor, who I saw, this afternoon and I've got an MRI scheduled for Wednesday. They gave my med list to a staff pharmacist (who agreed that I'm on "an awful lot of meds" and that there was likely some chemical aspect related to my anxiety) - but they couldn't touch the prescribed meds that the neuro has me on... I keep telling the neuro that the seizure meds are causing me anxiety and anger problems (not to mention other side effects) and he keeps telling me that he wants me to wait a little longer, to see if the side effects go away.. well, I can't take it anymore and my job is in jeopardy, so I broke. And I didn't even the guts to tell my boss over the phone, I told him that, in light of today's medical emergency, and my related health issues, my doctor told me that I should take some time off of work. Then I called the company that handles our FMLA and started the ball rolling. They asked me what was wrong. I stumbled around, couldn't really bring myself to admit that the anxiety is killing me... just said that multiple physical illnesses, combined with some prescription interactions were giving me problems - and the anxiety related to getting my health under control was taking over my life - I just couldn't be productive. The person on the other end of the phone said "so what I hear you saying is that anxiety, related to the physical ailments you're dealing with, is causing you problems and you need to address that - is that right?". Now all I can think is, "I said the WRONG THING" and they will deny my claim and I will lose my job and everything will go straight to he!! (are we allowed to swear on this site? I know it's not polite, so I'll try to keep it G-rated). I got a very clear message from the health care providers I saw today that they believed I was in crisis... and if I were watching/ listening to myself (as a bystander), I'd probably be scared (which explains why so many people asked me if I was considering hurting myself or others today... I think I have 3 flyers with phone numbers and contact info for people in crisis) -- but, speaking for me, myself... I still feel like "it must not be that bad... I'm still walking, I can still sit here and type - I can barely carry on a conversation for more than 2 or 3 minutes without going off on a tangent or starting to sob, but other people are worse off than me, so what's my problem?" They prescribed an anti-anxiety (oh great, ANOTHER PILL!!!), and normally, I'd avoid taking more neuro chemicals because I'm already taking so many, and the lyme is already in my brain, but my body is locking up, I rarely get more than 3 hours of sleep at night, and I forget to eat so I get really shaky a lot, and I know that doesn't help.
I don't know what I'm really saying /asking for in this post, but I do feel safe posting my feelings here. Thank you all for your support.