posted
Hi, Without going into too much detail: my husband is waiting to see Dr. D in MA the beginning of Nov for dx and tx of CLD. We're thinking he's had sx's for close to a year+ and they are all pretty stereotypical neuropsych sx's. Understandably, due to his pain and discomfort, he has become distant, irritable, very moody, intolerant, depressed, mildly paranoid, and thinks perhaps there is a problem with "us"(specifically "me"). He has even had one "psychotic break" about 9 months ago, but since it was following a heated argument (which never usually happens) he has blamed me for his behavior. Testing by a APRN confirms many hormones have been WAY out of wack for many months, but yet he is determined to wait for the specialist--because he believes that once the Lyme is treated, the other sx's will go away. Despite reading and re-reading all the psych sx's on the net (that I have found and forwarded to him--he doesn't believe it--he thinks Lyme is primarily affecting his neuromuscular systems) he is adamant that the problem is with "me". He has threatened to leave--and almost left about 5 times in the last year--for what most would say were minor and normal marital issues. We have two young children and normally a very loving family and marriage. I am so scared that we may not even be together by the time he sees the specialist in another 3 weeks. His behavior is so irradic (but seemingly only with me--is that strange?)Has anyone exoerienced anything similar? Does anyone have any advice on how to encourage him to address the "psych" aspect of Lyme before it is too late? Thanks for your thoughts.
Posts: 8 | From CT | Registered: Oct 2007
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hi WW, and welcome to LymeNet!
I am just going to take your post and break it up a little so it is easier to read.
............................................
Hi, Without going into too much detail: my husband is waiting to see Dr. D in MA the beginning of Nov for dx and tx of CLD. We're thinking he's had sx's for close to a year+ and they are all pretty stereotypical neuropsych sx's.
Understandably, due to his pain and discomfort, he has become distant, irritable, very moody, intolerant, depressed, mildly paranoid, and thinks perhaps there is a problem with "us"(specifically "me").
He has even had one "psychotic break" about 9 months ago, but since it was following a heated argument (which never usually happens) he has blamed me for his behavior.
Testing by a APRN confirms many hormones have been WAY out of wack for many months, but yet he is determined to wait for the specialist--because he believes that once the Lyme is treated, the other sx's will go away.
Despite reading and re-reading all the psych sx's on the net (that I have found and forwarded to him--he doesn't believe it--he thinks Lyme is primarily affecting his neuromuscular systems) he is adamant that the problem is with "me".
He has threatened to leave--and almost left about 5 times in the last year--for what most would say were minor and normal marital issues.
We have two young children and normally a very loving family and marriage. I am so scared that we may not even be together by the time he sees the specialist in another 3 weeks.
His behavior is so irradic (but seemingly only with me--is that strange?)Has anyone exoerienced anything similar? Does anyone have any advice on how to encourage him to address the "psych" aspect of Lyme before it is too late?
Thanks for your thoughts.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Did his behavioral changes start before the chronic pain and other neuromuscular issues? Lyme is known to cause mood changes, anxiety, irritability etc...all of which are made all that worse by the pain and other problems it causes. Therefore he is right that Lyme treatment will work on both of those aspects.
What are his specific neuromuscular issues?
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I'm so sorry that you are having to face such a difficult challenge.
Chronic illness tears so many marriages apart. And the ones that survive are surely stretched to the limit. If you spend enough time reading here, you will certainly find many who have faced and are facing very trying ordeals in their personal relationships.
On top of that...Tickborne diseases in particular are especially difficult on relationships. At least with other diseases, one sort of knows the pattern of what is to come. With TBDs, anything and everything can go wrong with the patient, so trying to predict a pattern is anything but easy.
If your husband has already denied owning psych issues, I really don't see how anyone can convince him otherwise. You have done a great thing by providing him with literature, and by searching for answers...
But, ,if this isn't perceived as a joint issue...I really do think you are in for a difficult battle.
Having said that- it isn't a battle that can't be fought and won! With time and proper care, things should get much better for all of you. Have patience.
In the meantime...I would strongly suggest some counseling for YOU. Hopefully, he will join you eventually.
There are really good LL councilors out there that can offer help to your family. But if he will not accept this as a viable solution, I really do think you should do it for yourself.
I'm sure others will come along with more suggestions soon.
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Here are some articles and sites I've bookmarked.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Watching and Waiting:
if you wonder why Melanie retyped your message it's that most of us can't read more than two sentences without a break. (Thanks, Melanie.)
Now. W & W :
I hope you will stay safe and your kids will stay safe. Do you have some friends or family you can call for suport.
Might it ease stress if some temporary living changes could be made - not for reasons of disagreements, etc, but just to lessen the stress for everyone right now ?
Whatever you can do to lessen stress or bring some calm enjoyment I hope you have the support around you and your family. If you don't know anyone to help, how about contacting your closest lyme support group or a volunteer group around?
If someone broke an ankle or even had a bad flu, you'd need more help. Looking at it that way might be easier.
The very best of luck to you.
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
welcome to the board. i sent you my newbie package of 78 pages of links, advise, symtoms, tests, disability, much more including treeatrol's archive of over 1000 sites of good lyme info!
you are not in an easy path right now with hubby. he's in denial plus.
best wishes on getting yourself to counselor for yourself and him eventually.
meanwhile, start reading galore to educate yourself and him when he starts accepting things.
What Causes Illness and Mental Illness?
carol in PA, your last link caused the post to go SUPER WIDE. please use www.tinyurl.com and copy short one here deleting the LONG one by editing it.
click on pencil to open up subject line and body text. click edit send when done. thx!
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quote:Originally posted by chamade: Did his behavioral changes start before the chronic pain and other neuromuscular issues? Lyme is known to cause mood changes, anxiety, irritability etc...all of which are made all that worse by the pain and other problems it causes. Therefore he is right that Lyme treatment will work on both of those aspects.
What are his specific neuromuscular issues?
I just wanted to thank you for your quick response and support. This is the first time I've ever joined an online chat, and I was so surprised that people replied quickly and were so thoughtful..thanks!
Looking back on everything, it seems that he MUST have had at least the beginning of Lyme prior to the large incident in 12/06. But because he never actually had a rash, no one seriously considered Lyme although every specialist mentioned it (initial testing was negative).
Anyway, so--no, I'd say that he is normally a really laid-back, sweet guy who prides himself on letting things roll off his back. And he has always beenthat way for about the 5 years we were together before this "breakdown" started occurring.
I agree that the proper treatment will help address these issues, but my fear is that he will already have decided that the problem is "me" and our children will be affected.
I am confident that his processing and perceptions are hugely skewed by the disease, but if he leaves--even to come back when the disease is under control--he will have done ireparable damage to our children. And yes---I've tried explaining this---so has his father and step-mother, unfortunately.
He is just that impulsive, irrational, and unreasonable at times right now.
His specific neuromusular issues are very "classic" according to the checlists online: tingling, hightened auditory/visual senses, major muscle twitching at times, rapid heartrate, sweats, temperature, headache, backache (also has a compression fracture no one can explain--he's only 30!), rapid weight loss--especially of muscle, it seems, tinnitus, variable BP, vertigo, the list goes on....of course these come and go--and I had already learned prior to the diagnosis--that any disagreement (even the slighltest) with me causes an almost instant falre-up of symptoms.
[ 09. October 2007, 07:26 AM: Message edited by: watching&waiting ]
Posts: 8 | From CT | Registered: Oct 2007
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posted
Thank you again for your kind words and support. Actually, I do not have family support (aging parents who are out of state) but I have a few good friends who have been there to listen, and I have been going to an awesome counselor for quite some time.
Initially my fear was mainatining things for my children, but as he continues this "push-pull" thing, I am becoming emotionally drained. Although he is the main victim, I am rapidly wearing out of energy to cope and address each "new thing" with kindess and empathy. Until he sees the specialist, I don't see how I can trust him to stay or take him at his word--since it changes so quickly. And he is becoming mildly paranoid, as well. I love him with all my heart, and it is so sad to see this disease eating at him slowly.
I really appreciate everyone's encouragement and links. If anyone knows of medications which have been helpful for neuro-psych (especially the "psych"!) issues, I would be grateful.
Posts: 8 | From CT | Registered: Oct 2007
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bettyg
Unregistered
posted
idea, go to SUPPORT and look for a post from MRS.DOCDAVE; dave//our resident dentist has chronic lyme; she doesnn''t.
she'd be perfect as she recently joined to help spouses going thru what/she dave have ....mental aspects of lyme! good wishes on finding each other.
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Could you be more specific how to contact this woman? Look in support groups? Would I start a search somehow?
I am not familiar with how to navigate in a forum like this. Sounds like an amazing suggestion, though--thanks!
Posts: 8 | From CT | Registered: Oct 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by watching&waiting: Could you be more specific how to contact this woman?
Thanks so much for following up on that! I also just sent her a "PM" hoping to hear from her. Again, I just can't thank everyone enough--the responses have been overwhelming!
Posts: 8 | From CT | Registered: Oct 2007
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posted
His physical symptoms are almost identical to mine. It's a great first step that he is seeing a LLMD. Things will get better slowly from there on. I agree, it's really important for him to calm down and avoid stress as much as possible. I also have flare up of symptoms when in an argument or under stress. It also lowers the immune system so it's important to avoid it. I have been on Nortryptyline for my nerve tingling/pain but it is also an anti-depressant and it improved my moodiness and irritability. It will help him to treat the symptoms, at least at the beginning, because antibiotics will probably take some time to work since he is chronic. With nortryptyline I was still able to monitor my progress, just the symptoms were not as bad.
my 2 cents...good luck
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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Thanks for the suggestion! I passed it along to the APRN who is working with us while we wait for the LLMD appointment. It was great to hear you have experienced many similar things and attribute it to the disease.
Any suggestions on how to help encourage his awareness that his feelings/confusion and apathy may be due to the diease rather than caused by "me"? I would be grateful for your thoughts.
Posts: 8 | From CT | Registered: Oct 2007
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posted
It concerns me that you have an appt. with Dr. D. Did you know that he does not treat co-infections?
Because you're husband has Lyme (most likely) and was bitten by a tick, he also most likely has not just Lyme but also at least one co-infection, such as babesia or bartonella.
Dr. D will treat his Lyme but not the other infections so this means he will not see a complete recovery unless he finds an LLMD which treats the co-infections as well.
Posts: 366 | From MA | Registered: Apr 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
there are a lot of good llmd's in ct and ny who do treat coinfections-but i think dr d is changing a little. i do know someone who has improved a lot with him. some people can only afford to go to him-and he is much better than no llmd.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thanks for the two previous sets of thoughts. I'm sure my husband is "set" on seeing Dr. D because the appointment was scheduled many weeks ago.
We did not know that Dr. D doesn't treat co-infections. We mistakenly assumed he "covered it all" since he seems to have a lot of info on the Internet.
Any more info on other LLMD's in CT, suggestions on questions to ask when we go see Dr. D, or ways to address/rule out co-infections would be appreciated. Thanks!
Posts: 8 | From CT | Registered: Oct 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
In my opinion your hubby should go ahead with the appointment he has. It won't hurt him to get started in the process.
If your hubby sees Dr. D and asks about co-infections and how he deals with them and doesn't get a positive response then he can look for another LLMD.
At least he will be in the process of healing and not just waiting to see another LLMD.
In fact, he may want to even schedule a follow-up appointment, in case it takes a long time to get into another LLMD.
You can find LLMD info in Seeking a Doctor Forum.
I have a son who has Bipolar Disorder. Now it COULD be because he is an artist, there's a high link between the two, but in my opinion it's from Bartonella, a co-infection.
You see, I had Lyme, and Bart and Babs, during my three pregnancies beginning over 30 years ago, but of course back then I didn't know it.
Hang in there, I know it's tough living with someone whose mental status is tenuous.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yes, W&W, Lyme can really change a persons personality. When My ex-husband and I bought a new house and cleared the land, we both got multiple tick bites and both got Lymed- and he was just treated for one month just like me- but his joint pain was all gone and so he went off meds. He was NEVER the same person as he was before that. Never. Never.
I would be careful if/when your husband is treated for babesiosis because pepole can get very VERY angry when herxing with babs- he sounds very babs-like. Babesiosis can cause what Doc RB calls "babesiosis rage".
I really believe my H was still sick and didn't know it. We ended up divorcing and I am glad because I owuld never have made a happy, new life for myself- he has continued, my ex, to change for the worse in behavior and in personality. People have been baffled by his behavior who knew him all his life...
About two years ago he said to me, "God, I could barely walk yesterday- sometimes I get these attacks of terrible joint pain and swelling where I can barely walk!"
I raised my eyebrows at him.
"It's because I'm aging, my Lyme was treated!" he said in response. He was 37 years old.
"God, I hope it's not the Lyme." he said, waittng for our daughter.
A few years back he called me, distraught, because his business partner had been diagnosed ALS. He had me talk with him and he got him asap to a Lyme doc and Mike, ALS guy, got treated for Babs and recovered-
ANYWAY, he believes in Lyme, but despite recurrent attacks of knee pain and swelling insists he is fine...
Like you, watchful & waiting- I am, too- he is still my daughters father and I hope he is ok-
BE CAREFUL- Lyme DOES make people different and Babs and Lyme have been tied to a few violent incidents where people erupted. Just be careful, go with your gut instinct, protect yourself and your children if you sense violence.
Your description: distant, irritable, very moody, intolerant, depressed, mildly paranoid, and thinks perhaps there is a problem with "us".
If you can afford a therapist they can be of great benefit in times like this!!! Contact your local support group and see if you can find a Lyme literate one. If you have insurance and can get approval visits can be as low as $10 a pop-!!! And if he won't go, you can. It can help to talk to someone outside the situation!!!
Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Please make a plan for yourself and your kids to get out immediately if you feel the need.
and if you could discuss this as a couple first, tell him that if it gets to a point where you don't feel his reactions are safe, you'll just get out for a little while.
or discuss this with a counselor, together as a couple if possible. Have a bag packed with necessities, though. and remember, this is a medical thing - and temporary - but still a plan in case of emergency is a good idea.
it is good that you recognize it's the disease and not the man.
still if someone had projectile vomiting, i'd make sure to run for cover.
does any particular music help ? maybe Mozart ? there is something very balancing to Mozart's music. And he never "dumped" into his work. He wrote only happy stuff and does not the severe highs and drops of some other composers.
one reason classical is so good is that the theme changes, but keeps repeating the basic theme or returns to it. great for the brain. the book, THE MOZART EFFECT is very interesting.
also, i hope he's not taking anything with aspartame (nutrasweet) in it. it can make rage worse as it's a excito-toxin (as is MSG in all its forms). even check your toothpaste.
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Boy, what a situation!!
I would be leery of psych drugs, even temporarily, as these can cause violent rages, suicidal thoughts, and can have serious physical adverse effects also.
B vitamins can help a LOT with moods, and fixated thinking. Especially B1.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
I know that my cognitive/psych symptoms bothered me very much. I somewhat knew I was doing it, but my husband irritated me to no end.
He just said nothing and took blame for it all. He understood that I was not normally that way, that the illness was making me be a person I was not. He would just hold me when I needed it.
He never argued with me about anything, because there was no purpose in it. I was irrational.
Even my kids understood that when my symptoms were flaring, I was not the same person I normally was.
Your husband may start realizing he's doing this once he starts treatment. There is no sense at all in trying to work through whatever complaint he has ... just understand that he's sick and isn't thinking rationally ... be a listener. However, don't condescend or patronize him. It makes us irrational, but sensitive.
I can't imagine how hard it is to be the spouse watching this happen ... but I can tell you, it will get better.
My LLMD uses drugs that pass into the brain -- minocycline is known for being good with that. My LLMD is talking about doing IV Rocephin if my cognitive symptoms don't improve with bart treatment.
Hang in there. Be nothing but supportive. Forgive and forget ... he'll need a lot of it, plus a good dose of love and affection.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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It was wonderful to read your story. I can only hope and pray that my husband will pull out of this fog someday and realize what our relationship has been through. You are amazing--and your husband sounds absolutely wonderful and supportive. He must really apprecaite your ability to try to comprhend what your loved ones have had to endure.
Is it usual to want to push your sppouse/family away? Has anyone felt this urge with Lyme or co-infections? Is there any logical/medical reason for NOT wanting support from your loved ones when dealing with this? Are/were your feelings different prior to/just after diagnosis versus several months into treatment?
Thank you for your encouragement. I wish there were some way to help my husband "see" as you have. But in the meantime, I will take solice in your suggestions and hope that I can diffuse my own anger and resentment so that he does not feel it. He (and you all who are dealing with Lyme and coinfections) is certainly only trying to cope the best way he can.
Posts: 8 | From CT | Registered: Oct 2007
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posted
Honestly, I think the pushing you away is a guy thing. Men don't want to be weak and Lyme makes you weak. All you can do is make him understand that you know he is strong for dealing with this, that any weakness is simply his body coping with the Lyme.
My husband told me (when I asked him about this thread) that what has made it all tolerable is that I do understand that I'm not myself.
He has been wonderful through all this. I'm sure your husband will say the same about you.
I have many fewer mood swings now. My main cognitive problems at this point are memory issues and disorientation. I have been in treatment for about nine months and had it for about 35 years undiagnosed ... sick for about 4 years.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I am a woman, but I guess I am like a guy in that I don't want to be weak or dependent.
I cannot stand to see what my not being able to work is doing to my husband. He will never be able to retire because of my illness, and he is not well himself due to arthritis and valvular heart disease. He does hard physical work, and is much too old to be doing it.
The onset of rage is what finally got me diagnosed with Lyme, since it was so completely out of character for me.
When I first started having rages, all of the little annoying things about him that used to amuse me suddenly became intolerable to me. I felt disrespected, and I felt his demands upon me were unreasonable. There was some partial truth in this, but I blew it way out of proportion.
I not only wanted to push him away, so he could find a healthy, working woman and be happy and be able to retire some day, I also wanted to kill him for stupid things like hanging his towel up wrong, not putting something away in the right place, tracking leaves on the carpet, etc.
I told him many times he was not the type of man I needed nor the type of man I thought I'd married. I said this despite loving him very much. It hurt him deeply, but I could not stop the things that came out of my mouth once a rage started. I felt POSESSED during these rages.
I used to be a psychiatric social worker. I recognized that I had all the symptoms of an irritable depression. I saw a Neuropsychologist I had been to before for brain damage testing, and he confirmed my diagnosis.
Note: Be very careful with psychiatrists these days....their latest fad diagnosis is Bipolar II Disorder, which is basically an extreme irritable depression. They will put you on dangerous anti-psychotic drugs in a heartbeat, when you may not need them. I strongly recommend a psychologist or other counselor as a starting point instead.
For me the answer was a large dose of the amino acid supplement L-tryptophan at bed time to raise my serotonin level, because I had become so depressed about my illness and our finances.
Depression can cause severe anger sometimes. When a person is very afraid of what is happening to them, they may lash out at the person they are afraid of losing, and actually make it a self-fulfilling prophecy.
I have had no rages since I worked up to the one gram dose of L-tryptophan, which took about 3 weeks. I have been rage free for only a month now, but was having at least one rage per day before that for a couple of years, so that is a huge improvement.
My point is that even though TBD infection can cause rage directly, it could also be caused by a secondary problem, like reactive depression, in which case the treatment is very different. I hope you find an answer soon.
In empathy, Klutzo
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he's in denial plus.
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