HealingWell
Search Close Search
☰

My husband dx w/ Lyme....I think he's going crazy! help!

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/11/2010 6:03 AM (GMT 0)
My husband was dx w/ Lyme disease a few months ago. It has been a rough year of unexplained illness and symptoms and were happy to have an answer to what has been going on.  Our life is complicated in that he is the step parent on an unappreciative teenager and they don't get along. about a month after the diagnosis my husband moved into the basement, where he has lived for the last 3 1/2 months. We say hello and are cordial most of the time, but I just can't handle it anymore. I feel like I am now going crazy...I am not sure what to think or do anymore.

He isn't to forthcoming about what is happening. I know that he didn't take the recommend antibotics from the physician. He is smoking all the time and now drinking some. These are things that he didn't do before. He is irrational and moody. I am so tired and burned out....I was hoping to find some sunshine here. I have to go to bed now, but I will be back tomorrow.

Thanks for letting me vent, I really really needed it. I feel desperate.

Posted 10/11/2010 1:00 PM (GMT 0)
Livingca - Most people that have Lyme disease, get it from a TICK . Deer ticks are a real problem and if not treated in time, can cause a real serious problem. Does he has a rash of which is associated with lyme disease? Have he been seen for medical advice, as one really needs to get help for this problem. Good luck.
Posted 10/11/2010 1:03 PM (GMT 0)
Lyme and/or its coinfections can make you absolutely crazy. I was a totally changed person. Went from shy, happy, workaholic to angry, rage, nasty and sleeping all the time. First, get him tested for coinfections like bartonella. He will probably need anxiety and/or antidepressant meds along with antibiotics. get him help fast. He is surely headed in the wrong direction.
Posted 10/11/2010 1:49 PM (GMT 0)
Lyme can make you crazy ... and everyone around you. The physical and emotional changes can be profound, depending on the length of time you have it and what, if any, co-infections are also involved. This affects the whole family since he needs support and encouragement. He MUST take the meds and stop drinking and smoking. If he does not, he will not get better, only worse. It sounds like he already has neurological involvement.

Will he listen to you at all? If not you, is there someone he respects that will give him a stern talking to?
Posted 10/11/2010 3:57 PM (GMT 0)
Hi livingca!!
Welcome to our forum!! I am really sorry that you have a need to be here, but I am glad you found us!!! I'm sure you & hubby will find us to be a caring, helpful & understanding group.

It would most likely do you a lot of good to learn as much as you can about tick-borne infections, even if hubby doesn't want to right now. The best place for you to start is by reading the thread at the top of our forum titled "New to Lyme?... Start here". It is a bunch of info that some of us that have been here a while believe to be very beneficial & a good place to start with the education of patients & their families.

I'm in agreement with Caldonia - if he won't listen to you about this stuff, do everything you can to find someone who he does respect that will give him that "good talking to."!! I don't know if I would have listened to my hubby or not, back when I was first diagnosed. Lyme & other tick-borne infections do some pretty weird stuff to the brain - that's without going into any details about what it can do to the body!!

Cognitive & anger control were the worst thing for me to get through. I was also paranoid for a while. Heck! I wasn't even sure that my own children that I gave birth to & had raised myself weren't out to get me!!! It was a really rough weekend when my family decided they needed to confront me on that issue!!

Please don't try to convince him to move out of the basement right away - he may be feeling like he can't really 'trust himself' with his emotions & needs to have something like a 'buffer zone' in place.

I do hope we can help you to understand some of what hubby is going through. We have had quite a few family members here over the time that I have been here, trying to understand what is going on. I think that they were helped quite a bit by reading & posting here.

Do either of you have an idea of when hubby was bit? He could have gotten this infection from any bug that can bite & survive to bite again. Also, is hubby still able to work?

I do look forward to reading more of your posts, maybe we can help you to communicate through the possible brain fog that hubby may be dealing with, and be able to help with some other things as well.

Hang in there!!!
Posted 10/11/2010 4:04 PM (GMT 0)
i feel like im going crazy a lot of the time too. especially in university classes. I can't stand sitting there, feeling absolutely anxious for no practical reason, and feel like everyone is staring at me because i'm dripping in sweat. I've suffered for a year like this and I don't think i can make it to class much longer. I can't stand the anxiety i get and my doctor says i need to just "DEAL" w/ it. well i can't deal w/ it any longer. what should i do?????

ugh, i'm an idiot, i'm never going to get better.

I edited your post because talking about doing "street drugs" is not allowed here.

Post Edited By Moderator (CajunGrl) : 10/11/2010 2:44:36 PM (GMT-6)

Posted 10/11/2010 4:51 PM (GMT 0)
Dcraver,
Please don't beat yourself up so badly!! You're going to make it through this illness.

It sure doesn't sound as if your doc is understanding your tick-borne infections very well. Are you seeing a Lyme Literate Practitioner? Sorry if you have already posted about it - my memory still isn't very good as of yet. eyes

I would suggest that you find a doc (any doc) that will be willing to prescribe you something for anxiety. Anxiety is common with Tick-borne infections. Mine comes & goes - it has my gp pretty confused as to the why - but he still gives me what I really need. As a matter of fact, I received some very stressful news about some family members & had to go back on the anxiety meds again.

Your desperation is also very understandable. The mind & body can only take so much - I believe that that level of stress can only be determined by our bodies, not by our brains. What is excruciating for one person can be very different to another. I don't believe it is necessary for anyone to be in a lot of pain, or anxiety - there are waaaayyy too many good, effective meds out there!! My hubby is one of those big men (6'2' & 230lbs w/lots of muscle ) and has been told by many docs to "Suck it up" - that makes me madder than a wet hen!! I don't believe that anyone - as long as it is documentable - should have to listen to that from a 'doc'. At that point I begin to question the doc!! devil

I guess that is a product of having been through the diagnosing maze that comes with Lyme for some of us. smilewinkgrin
Posted 10/11/2010 7:38 PM (GMT 0)
Im so sorry to hear about your husband! I must admit, Ive had a long journey also. I was told I had MS at a young age after years of meds, I tested posotive for babesia/ lymes on western blot test. After seeking a LLMD and recieving treatment my life has changed...Now I cant tell you its easy or im getting better....All I can say is its a journey! I want you to understand he may be keeping his thoughts to himself and feelings...and from my expierence ...YES I CAN BE MOODY~ CONFUSED~ all the above! As for what a member said MOST PEOPLE have a Bullseye mark~ Im can tell you that is false, as im sure many other people on this bored. I hope you have a LLMD and Please dont read to much into people asking IS IT FORSURE Lymes? Dont get confused stay focused on being posotive and dont take things personaly with your husband, this is life changing and im sure you have read bits and pieces on our symptoms on here...Its really tuff! He is going threw allot just as you are! I will keep you and your family in my prayers!
Posted 10/11/2010 8:45 PM (GMT 0)
dcraver,

Please submit your own post so that members can answer your questions. Thanks.
Posted 10/11/2010 9:47 PM (GMT 0)
I never got the rash and I have had 4 + lyme tests. Not everyone gets the rash, even the CDC says so... Yes, it is tough, 2 mo I was much worse than today, so getting the right treatement is a must, otherwise, he will not get better, and in all likelyhood, he will get worse without treatement, including unbearable pain, which will cause depression to most sane people. You don't have to be crazy to be depressed. I was on antidepressants for a few months. As I started to feel a bit better, I stopped taking them. I felt like I did not want to be around anyone, and if I could move in the basement, I would have done so, but I have 3 kids under 6, so I could not. I did ask my husband to leave probably at least 10 times. He did not. He did not support me in the beginning, but now he is starting to understand and we are doing better as a couple.

Good luck!
Posted 10/12/2010 1:35 AM (GMT 0)
I'm also so sorry to hear about your husband and what you're dealing with. My personality changed drastically after getting sick and at times I would lash out at friends and family terribly for no reason which is so unlike me and the bouts of severe depression were downright scary. Even though I often feel so alone and isolated, I often think it's a blessing that I live alone because just having someone in the same room or house for that matter can be very stressful for me at times. I know this all sounds so strange and irrational and is very difficult to explain but my llmd understood right away what I was experiencing. It probably is best for your husband to be in the basement right now if that's what he wants. I realize that everyone's situation is so different and we all respond differently but I believe the med that helped the most with these issues was rifampin which I believe is often used to treat Bartonella.

I'm not sure if this is the best advice or not but would it be possible to speak to his doctor in confidence and let him know what's going on.

Good luck.
Posted 10/12/2010 2:26 AM (GMT 0)
Thank you all for your support! It helped and I will be here on and off. I am going to go to the library to get a few books on lyme..do you have any recommendations? I figure I need to understand more what is going on and find out from him what/which test were done and what results were.
Thank you again! I was so burned out last night....today is a new day!
Posted 10/12/2010 3:05 AM (GMT 0)
living;

If you are not too fragile, I would recommand to go to your library and ask for the "under our skin" documentary--it comes on a cd. If you can't get it, go on youtube and to a search. THe lyme docs in this movie are some of the best in the country! They understand ALL aspects of the disease with its challenges. But your library may have it or they can order it for you. It is about lyme and it is very interesting, but scary also. Everyone is different and responds to treatement differently, but this movie may be just you and your husband need to watch to realize what you will be dealing with if treatement is not started right away. It will cost you more later, aand it may not be easy to eradicate. I believe he will get worse without treatement. My LLMD has to have a knee replacement from lyme. He's been treating thousands of patients and now he got bit!
about books: I actually did not even buy one book, but I spent hundreds or thousands of hours on the internet reading tons of articles from reputable sourses. I recommend you start with "New to lyme..start here" topic (the first topic on this forum) and you will find protocols for treating lyme, as well as other important info... If you are interested in more articles, I can email you some links. I printed a lot of stuff and also saved the links. So much info gets you overwhelmed at first.

You can also find a lot of info on youtube, AS LONG AS you know what to search for and you know SOMETHING about the docs, otherwise I would not trust everything that's posted on youtube.

Hope this helps, good luck!

Good luck!
Posted 10/12/2010 1:34 PM (GMT 0)
livingca,

I'm really sorry for what you're going through - Lyme disease can just be absolutely insane. I think I know how your husband feels, so I can empathize with both of you. I got sick when I was 27 (I'm 30 now) so my mom was the primary caregiver to me. I was extremely angry, felt like my mind was constantly spinning in circles - having people around me only reinforced how awful I felt (because I was stuck at home, often in bed, unable to do the things I wanted to do and sometimes the things they would ask if I wanted to do, to which I got sick of replying, "I can't"). Having people around me also contributed to feelings of guilt - seeing people so worried about me, having to drop their lives to take care of me (spending time with me, doing my laundry, housework, grocery shopping, etc.) and me laying in bed feeling totally worthless. Even having my boyfriend in the same room with the TV on would sometimes drive me insane - I couldn't handle noise to a certain degree (e.g. hockey game on TV!). It seemed that even though I couldn't stand the relentless loneliness I felt, at the same time it was easier to just be alone...and try to avoid the cycles of emotions I would go through from interpersonal interaction (sadness, guilt, anger, envy, etc.).

I had to move to my mother's temporarily because I didn't have an income - I stayed in my bedroom the entire time I was there. I couldn't deal with life. I couldn't deal with how pathetic my life was, at 27 years old. I was so resentful that everyone else was going on with their wonderful, happy lives and I was stuck in my childhood bedroom, so crippled from pain that I sometimes couldn't prepare food for a meal or sit on the toilet or even lay in bed because my body was so sore. Even people asking me, "how are you feeling?" would make me SO angry! I felt like saying (and still do feel like saying!) "the SAME as I felt yesterday and the day before and the day before..."

If I could give you some advice, I would give your husband ALL the space he needs - try to think of this as much as a mentally crippling illness as physical. Let him know (and keep reminding him - this was SO important for me) that you are giving him space but that you're there to support him with WHATEVER he needs from you.

I know a few people suggested having a friend give your husband "a good talking to." I can tell you that this would have made me fly through the roof. I was too angry to have respect for someone who #1) had no idea what I was dealing with physically and mentally; and #2) was telling me what I needed to do when I was working with basic survival mechanisms (everything else had taken a back-seat and I was completely incapable). I think it would be good to reach out to friends in an effort to keep your husband from isolating too much - let them know what he's going through and that BOTH of you need support right now - but I would have them approach him very gently and on HIS time. Otherwise, with an angry, sick person you may risk him lashing out and pushing everyone away further.

You said he was diagnosed but didn't mention any kind of treatment plan... Is he still on any kind of treatment? Has he been experiencing Herx reactions and/or improvement at all?

I think two important resources for you (and him) would be: #1) Dr. Burrascano's treatment guidelines, which discuss smoking being absolutely hazardous to renewed health (and to my great surprise ;) I found to be SO true, but it took quite a while until I had the strength and desire to quit...Lyme made me do whatever I could do - eat, smoke, etc. - to get immediate comfort); and #2) the Under Our Skin documentary that others have mentioned can be HIGHLY informative, validating, comforting, soothing, etc.

Before I even read your second post I was going to suggest a few good books to you:

This is a 3-part book series by PJ Langhoff
1) "It's All In Your Head," Patient Stories From the Front Lines: Intimate Aspects of Chronic and Neuropsychiatric Lyme Disease
2) "It's All In Your Head," Around the World in 80 Lyme Patient Stories: Valid Reasons to Debate Current Treatment Guidelines
3) The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm?
These books are personal stories from others who have suffered through Lyme disease and they all focus on EVERY issue imaginable to Lyme patients and their families - I am incredibly grateful to the authors and hold the stories close to my heart.

Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub
This is a fairly lengthy book (over 500 pages) but has up-to-date information (was published in 2009) and just a great read overall - I consider it a Lyme Bible because it has everything...the very personal story of recurrent illness within the author's family and a host of information about the many aspect of life the disease can effect.

Hang in there - if you can co-exist with your husband, with the least amount of high emotion, hopefully he'll be able to pull through this and you can re-establish your marriage... In the meantime, don't forget to take care of YOU, too! See a counselor if you need to, reach out to friends and family for help, go shopping, take baths, get a massage, whatever you need to do to maintain your sanity... And keep reminding your husband that you love him and are there for him if he needs you. :)

Be well,

Rachel
Posted 10/14/2010 4:06 PM (GMT 0)
Thank you all for your great words! I will print ad go over the new to lyme here and check out the movie and some books and internet stuff. Any links would be appreicated and I will print and read...
Thank you
Thank you
Thank you
✚ New Topic ✚ Reply