Hi All,
New member. I was diagnosed back in June with chronic lyme and multiple confections after what seems like a lifetime of being dismissed by Dr’s over my laundry list of symptoms. Although my current Dr and savior seems to think i have been infected for over 20 years things became much worse for me over last 2 yrs following a head injury and what i was told was a spider bite by my former primary care. Since then, my headaches and cognitive issues have become almost unbearable. Im wondering how you all manage things at work. Im torn between wanting to maintain my privacy and wanting to explain my shortcomings to everyone as i feel so abnormal. Social interactions and communication are so difficult for me now and it creates so much anxiety. I am a shell of my former self and feel the professional damage will be permanent.
Gracie
What are your symptoms and treatment? I don’t have Lyme disease my husband does.His symptoms are so bad, going back to work would be a miracle.
What do you do at work?
Hi Jessica,
My symptoms are all over the place. Everything from difficulty breathing… where even walking a flight of stairs leaves me breathless… when i was used to running long distance. I have joint pain and swelling, severe headaches, loss of memory, difficulty concentrating, i cant find words and have trouble processing what people are saying… making me feel like a give people a " deer on the headlights " kind of reaction when in a conversation. I get sensory overload frequenly where noise and lights will overwhelm me. I also have extreme fatigue. There are do many more issues i have had… some come and go and fluctuate in severity. I have know. For a long time something wasnt right… what ki d of symptoms does your husband have?
Gracie,
My husband has severe vertigo which has been less severe lately. The vertigo is what got us on this night mare Lyme disease
Currently he has headaches that he describes as "it hurts and fills huge , tremors that are severe, even in his sleep so strong he bites his tongue. He has pain everywhere and is on a lot of pain medication .He is house bound, can’t drive for over 2 years or more. He gets really hot but feels ice cold. He has went to 3 neurologist and no diagnosis
Our primary care ordered a case manager and OT and PT
The therapist that came to evaluate Alan said that her husband had all of the same symptoms. She referred us to a Lyme disease specialist that her husband went to
He sent blood to genex lab and it was indeterminate
But his CD 57 was low indicating chronic Lyme. He went on a 4 month course of antibiotics. Now he is on a herbal drop which you are supposed to advance as tolerated. drop Tonight he is being dropped down to 1/2 aday. What kinda treatment are you on?
Jessica
Hi Gracie, well the GOOD NEWS is that it si not going to last forever. I have spent over the last three years getting treated with LDI-low dose immuno therapy and FINALLY my Doc says its pretty well over. Lab values are looking good, energy almost back to normal and BACK TO WORK as i want over the last 6 months or so.
Emotional stress is key here, less is better, I went through a desertion the same week I was diagnosed by my wife and that pretty much double sit for me. Each of us has a different story. Keep faith in God and your support system ,even if there are times they dont get it.
If it help here is Rays rule of thumb Lyme disease- EVERYONE FIGHTS NO ONE QUITS!
Going to get better- Ray
Hey Jessica, perhaps research LDI-low dose immun otherapy, its German, our system pretty much sucks with Lyme disease. Also you may check out a site called Envita, it has great educational articles and videos on our disease. If you read my profile, I know where r your husband is at, but he can thank God he still has you.
Sorry to be short, if I can help just have him beam me direct. Had it for perhaps over 20 years, deserted by wife same week diagnosed, just finishing three years of the LDI German treatment, how is his testosterone values? Key indicator in us men. Anyhow, my Doc now saying it is finally pretty much OVER for me.
Rays rule of thumb for disease- EVERYONE FIGHTS-NO ONE QUITS!
You have had Lyme for 20 years? That is the worst news for my husband and you too. The German ldl , what is it? IV, or oral? My husband has musculoskeletal disease. He walks with crutches. The pain of Lyme disease isn’t controlled. He has always been in pain since a crash in 1988 .He has a non union fracture in his right leg. He had a low cd57 which is why we think he has chronic Lyme disease. I didn’t read your story. We are going to our Lyme disease dr next week. I want to ask about the German immune therapy. Stay strongl
Hi Ray,
Thank you for responding, it is encouraging to hear that there may be a light at the end. I agree that keeping stress levels down is crucial. That part has been challenging but I am trying hard not to let this get the best of me. Im still at work but far from at my best. I have held back from going for promotions or career moves that i have strived for because even the simple tasks that were easy for me I struggle with silently. I will have to do some research on your treatment as i am not familiar with it. Wishing you continued good health. Happy Holidays ~Gracie
Hi Jessica,
I find it interesting how people end up being diagnosed. It seems like more often than not it is not from their primary care or even from the first handful of specialists they are sent to. I hope that changes someday.
Currently i am on a daily oral antibiotic and injections twice per week. In addition i also take herbal supplement as recommended by my Dr. I have been on various oral antibiotics for about 6 mo. The injections for about a month now. From all i have read from others with chronic lyme it seems like I have a long way to go. My joint pain and swelling has decreased but other symptoms, especially cognitive are the same of not worse. I am usually freezing with occasional hot flashes. No tremors thankfully. I’m so sorry that your husband suffers from them. I hope things start to turn around for him soon. Happy Holidays ~ Gracie
Gracie,
We just had 106 people diagnosed with Lyme disease in San Diego. How long have you been sick? I am going to ask our Lyme treater for support groups. Alan could use someoneto talk to with the same problem. He is computer illiterate so chats online are useless. If you don’t mind, how much money have you spent. The injections, are they antibiotics? I have a feeling that all of the chronic fatigue and fibromyalgia people have Lyme.
Hi Jessica,
I believe i was first infected over 20 years ago when i was bit in the head. I knew nothing about lyme back then but looking back a lot of my symptoms started after that bite. I have spent years going to Drs for my various symptoms… shortness of breath…migraines… numbness, tingling, spasms, fatigue etc. Etc. Only to have test come back “normal” . I have spent 20 years being told its stress, hormones, depression, and being dismissed and being treated like I am crazy or a hypochondriac by medical professionals and my family. It has been isolating and has left me angry… although for my own health i know I need to work on that! I have spent a ton of money over the years on copays and deductibles. Yes, the injections are antibiotics. Currently, i have been fortunate that my insurance CO is covering the antibiotcs and injections as well as the twice weekly visits for the Nurse to administer. The copays are adding up to almost 200/mo . In addition i pay out of pocket for the herbals which I get on my own. I have heard that some people have trouble getting the injections covered by insurance but that has not been my experience so far. A support group would be wonderful idea.
Gracie,
I’m wondering what kind of insurance you have .We have medicare hmo. Our primary dr knows that we have chronic Lyme. He sent us to an infectious disease dr. He wouldn’t even consider Lyme , he was going to recommend a rheumatologist. I think that Alan has had Lyme for 4 years. I can’t imagine what you deal with everyday let alone for 20 years. Where do you live? Alan has no recollection of being bit. The CDC approved Lyme test came back negative. We only started treatment because Alan has a case manager who recommended home pt and ot. The occupation therapist husband had Lyme disease and is being treated by our dr. He was tested by a lab called genex in San Francisco. The only test that indicates Lyme was the cd57. Alan has been having tremors every time he sleeps
The pain is bad. I am wondering what test indicated Lyme for you.
Jessica
Gracie! I AM WITH YOU! I have suffered from chronic lymes for 20 years, been through HELL and not had the support of either medicine nor friends and family, except for mom of course. I am a chef and it has been a terrible struggle to get where i am today, despite ehrlichiosis, and rocky mountain spotted fever, not to mention the litany of symptoms from lymes. treatment? what the hell is that? nothing has ever worked for long and antibiotics, well, i don’t have to tell you that it only makes it harder in the long run. Pain, weak immune, self doubt, bipolar emotional states, low self esteem, forgetfulness and foggy head to downright onset stupidity, as well as severe to crippling depression… it is fricken hard having this disease. And the worst part, Gracie, always the worst part, is feeling so completely alone. YOU ARE NOT ALONE. But… i can tell you that explaining yourself will not do what you hope or need it to for your career. People do not have to deal with this kind of intensity and wide range and variability in type of symptoms in their daily lives. they get sick, they take drugs, they recover. I call it “half-man” disease (half-woman in your case) because you become just that. You must seek out people who suffer as you do, it is all that will help; you must support your emotional health, your intestinal health, and your nutrition. I highly recommend Sam-E supplements. I know all this and I still struggle as you because we’re people dammit and we are ignored as hypochondriacs by most folks. Read from the people at this site, and do your best to support yourself as above and you will do the best we can hope for: survive and persist. I wish, truly, I could remove your pain; I know that in the dark of night when all is closing in you are sweating hard what will become of you. Take the good with the bad. We can find hope in the little things, but mostly in what we do for ourselves to survive. I love and respect you, dear, always know that others here will too.
Hi Gracie. My boyfriend has Chronic Lyme and he’s been experiencing the same symptoms as yours. He has taken Doxycycline back then and eventually stopped when the symptoms were gone. But right now, they are back again and he suffers a lot. He is fit and eats healthy everyday but right now, he is helpless. We don’t know what else could help him reduce the symptoms or treat the disease.