Ex-GF is being distant, is going through treatment

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Deftones
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/18/2009 7:26 PM (GMT -7)   
To start my ex-gf has lyme. She's had for 5 years or so, and we've known each other for a year, dated for 8 months or so and broke up about 6 weeks ago. We still had a physicaly relationship and spent lots of time together post-breakup until she went out of town for a month (still out)....were she made our breakup more concrete over the phone...


More background....she went through a series of treatment before I knew her including some type of iv injection in her arm, oral pills, etc...She told me she would lay in bed for 20 hours straight. She lost so much weight, became frail. She was miserable, and alone...her whole family lives out of state.

For majority of our relationship she was off treatment and doing pretty good but not good enough to go back to work, still fatigued easy. She started treatment a few months ago and i slowly saw her deteriorate emotionally, physically, and mentally. She's depressed and admits to me that she cries everyday. She had a 6 figure job that she loved and was very proud of and this disease has taken that from her. I think she's doing better than the 1st go around but the drugs have changed her and obviously our relationship has ended. TBH, we never fought and to me it seemed everything was going very well when she decided to end it.

She told me she felt guilty that she couldn't give me the attention i deserve, i think she felt a lot of guilt. I tried to reassure her but didn't work. Plus there is a large age gap b/t us but her worries about that seemed to be increased w/ the drugs.

I'm not positive of all the drugs she's on but the big one is flagyl (metronidazole).

She's pushing me away, and i know nobody else w/ lyme to get advice from. Is this normal?

Idk if i love her but she's very important to me and i don't want her to go through this treatment alone like she did the first time. I still very much want to be with her and be the biggest help i can be while shes going through this.

She had an outburst towards me while she's been out of town, very out of line and unlike her. Pretty much unprovoked, and she has admitted to me about being more short tempered with her nieces and some others...But she has never had an outburst towards me, we had never even had a fight before this. What she said was completely out of her character and i'm trying to remind myself that its the treatment and its the drugs.

When she comes back, she wants to have some time apart. I want to give it to her but at the same time it kills me to think shes going to be alone going through this treatment. I feel like I don't know what is her and what is the drugs sometimes. I want to be there for her but i don't want to overstep my boundaries or force myself on her at all.

I want to reassure her that i care a ton for her, and i will be there for her but she is saying now that she wants me to move on.

We had an amazing weekend before she left out of town, we spent quality time together, and had a great physical weekend as well. Once she was gone she became very distant and almost cold towards me. It was a shock and came as a surprise, i thought we were in a really good position.

I wanna be what she needs even if that means letting her go with hopes of her coming back.

I'd like to know how people with lyme have dealt with relationships. Is this normal to distance yourself during treatment? I know she feels bad, i know shes depressed and she has a lot on her plate. She's admitted to feeling guilty about me sticking with her. I think she also feels guilty that i'm so much younger and maybe shes robbing my youth? But i don't feel that way. She seems very insecure and her self esteem has taken a hit b/c of this disease.

She'll be back home in a week and a half and I just don't know what the future holds for us. I've been cleaning her house while shes gone and i'll have her yard looking perfect. But after her outburst idk if she'll be appreciate it or think i did to suck up more or less (i had started the day after she left, well before her outburst)

All thoughts, advice will be appreciated. I've never been in a relationship with someone suffering from something like this.

ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 4/19/2009 6:49 AM (GMT -7)   

Hi Deftones, welcome to the board!

I am very sorry about what you and your ex have been going through.  I think it is great that you are so supportive and want to understand the disease.

Below is a Lyme symptom list.  There can be any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushin
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
 
Lyme disease and some of the medications that treat it can cause depression in some people.  It can also be difficult to handle the losses these diseases can cause.  Is she being treated by a knowledgeable doctor?  Has she told her doctor about the depression she is having?  This can be helped. 
 
Besides Lyme, ticks can also transmit several co-nfections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Has she been tested for these?  When multiple infections are present, symptoms of each can be more severe.  Lyme and one of the co-infections can cause rage in some people.
 
Are you familiar with the Jarisch-Herxheimer Reaction (herx)?  Often when people who have Lyme take antibiotics, their symptoms become worse or they get new ones.  When the antibiotics kill the bacteria toxins are released making them feel sicker.  It can be scary, but it shows the antibitoics are working.  Although it can vary individually, many people experience this at the beginning or change of treatment and every three to four weeks.  It is important for her to do things to strengthen her immune system and detox. 
 
During treatment, it is good for her to document her symptoms daily.  One way to do this is to list the main symptoms she has each day with a numerical rating of their severity from 1-10.  Over time when she reviews this, she can see when her herxes occur and how she is responding to the meds. 
 
It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the books "The Lyme Disease Solution" by Kenneth B. Singleton MD and "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner.  
 
Again, I think it is great you are so supportive.  You may want to tell her about this site, it is a great place for support and information.  It is so important for people to know they are not alone.  It can take time, but with proper treatment she can get better.

Deftones
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/19/2009 3:05 PM (GMT -7)   
These are the symptoms i've been noticed and the most prevalent ones with her
[quote]
Fatigue, tiredness, poor stamina
Unexplained hair loss
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Shortness of breath, cough
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Headache
Eyes/Vision: light sensitivity
Ears/Hearing: sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening


and she may be trying to suppress some of the others around me. She is being treated for lyme by a notable doctor yes, he is actually featured in the Under Our Skin documentary. She is also seeing a psychiatrist but i'm not sure for how long, that was something she didn't reveal to me until after we had broken up. I think she was probably seeing her before and during our relationship.

She did have some of the co-infections, but not positive of what they were. I think the co-infections for the most part were targetted during her first treatment. I'm not familiar with "HERX" but my gf and her doctor explain the treatment in that way, basically you'll feel a whole lot worse in order to feel better. She's taking anti-biotics, pro-biotics, so much stuff. I believe she's been tested for everything. For a year or so, doctors kept calling it something else until she was finally tested for Lyme. Some would just blame it on work overload, and she was just "tired". So she's been all over to get tested, I know she went to some specialist in new york. She went through a lot prior to us meeting.

I'm not sure if she has told her Lyme doctor about the depression but that's one of main things she discusses with her shrink.

I would like for her to come to a site like this, i've tried to get her to discuss on forums before...explained it helps me to talk to strangers anonymously who are dealing with the same issues which may offer a diff perspective or some type of relief. She just doesn't want, she says its not for her. I wish she would but i guess for right now, talking to the shrink is what helps her. I personally feel it would be better to talk to people who are dealing with the same issues she is, a shrink can go to school but she doesn't know what its like to deal with lyme. We are also in an age gap relationship, i was wanting her to join an age gap forum with me. But, hopefully the psychiatrist is helping her, i just wish she would discuss more with people who are going through what she is.

As far as i know she doesn't talk to anyone with Lyme.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 4/19/2009 4:04 PM (GMT -7)   
Hi Deftones,
 
I think it's wonderful that you posted about your girlfriend, what a caring person you are!   
 
Your girlfriend reminds me of myself even though our stories are different.  Before I was diagnosed (and that took years), I isolated myself from mostly everyone.  I pushed people away and I even got to the point where I didn't want my husband around me because I felt guilty as I knew I was sick and couldn't do the things he expected me to do (though I didn't know it was lyme at that time) and asked him to move out because we were fighting all the time.  The stress was too much for me and I really wanted to be alone.  Eventually he did move out and we divorced.  Unlike you, he was not supportive.
 
I was very down on myself, I felt worthless, angry that I couldn't do the things I used to do, all negative feelings. Prior to getting sick I was the most optimistic person, a fun person as well as extremely energetic.  So my life turned upside down and I didn't know how to handle it.
 
The difference between your girlfriend and myself is when I finally did get a diagnosis of lyme and ehrlichiosis I was thrilled because I finally knew what was wrong with me and knew there had to be a way to get better.   And better I became even though I used a different treatment.
 
Maybe say to your girlfriend "you will get better, this is temporary" or something like that. 
 
If you want, you can e-mail me (click on the gray envelope on the left side underneath my user name).
 
Hope this helps,
Denise

It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


xoxoxox
Regular Member


Date Joined Jan 2009
Total Posts : 22
   Posted 4/19/2009 7:53 PM (GMT -7)   

Hi Deftones-

You sound like an incredibly supportive BF and hopefully, one day she will be able to see that. Keep educating yourself so you can continue to support her with information.

As to what you should about the relationship, it may be best to back off. Irregardless of why her mood toward the relationship has changed - (from a herx or if her feelings have truly changed or if it has to do with her self-esteem) - pushing yourself on her will likely result in pushing her away.

Let her know that you care, that you want to help, that you'll be there if she wants it but then walk away. It'll be very hard to do, I know. She may realize that you are what she needs. It gets very lonely when you are in a lot of pain and perhaps the thought of having you there will become appealing to her.

You should be commended for seek knowledge on Lyme & its effects to help your GF. I hope it works out for you both! Let us know.
 
Danni

Deftones
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/19/2009 11:20 PM (GMT -7)   
Deejavu said...

Your girlfriend reminds me of myself even though our stories are different. Before I was diagnosed (and that took years), I isolated myself from mostly everyone. I pushed people away and I even got to the point where I didn't want my husband around me because I felt guilty as I knew I was sick and couldn't do the things he expected me to do (though I didn't know it was lyme at that time) and asked him to move out because we were fighting all the time. The stress was too much for me and I really wanted to be alone. Eventually he did move out and we divorced. Unlike you, he was not supportive.



I was very down on myself, I felt worthless, angry that I couldn't do the things I used to do, all negative feelings. Prior to getting sick I was the most optimistic person, a fun person as well as extremely energetic. So my life turned upside down and I didn't know how to handle it.



The difference between your girlfriend and myself is when I finally did get a diagnosis of lyme and ehrlichiosis I was thrilled because I finally knew what was wrong with me and knew there had to be a way to get better. And better I became even though I used a different treatment.



The 2nd paragraph sounds a lot liek the way my girl feels, and the way she seemingly was. She's still fun but i think some of her optimism has been taken a way and obviously lyme zaps your energy. Now if she does something like work on her yard for a few hours she'll feel exhausted for 2 or 3 days. It wasn't THAT bad before her recent treatment started but she'd still be feeling it longer than she would've pre-lyme.

With your husband...did you express your guilt to him? If he had been supportive and tried to help do you think you would still push away? Would you have still wanted to be alone?

Deftones
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/19/2009 11:21 PM (GMT -7)   
xoxoxox said...
Hi Deftones-

You sound like an incredibly supportive BF and hopefully, one day she will be able to see that. Keep educating yourself so you can continue to support her with information.

As to what you should about the relationship, it may be best to back off. Irregardless of why her mood toward the relationship has changed - (from a herx or if her feelings have truly changed or if it has to do with her self-esteem) - pushing yourself on her will likely result in pushing her away.

Let her know that you care, that you want to help, that you'll be there if she wants it but then walk away. It'll be very hard to do, I know. She may realize that you are what she needs. It gets very lonely when you are in a lot of pain and perhaps the thought of having you there will become appealing to her.

You should be commended for seek knowledge on Lyme & its effects to help your GF. I hope it works out for you both! Let us know.



Danni


Thanks

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 4/20/2009 4:30 PM (GMT -7)   
Hi again Deftones,
 
No, I didn't express much to my ex-husband except that I was sick and that I didn't know why I was sick.   I remember feeling very angry at him because when he became sick with Crohn's Disease I took him to so many doctors, took off from work, I was there for him in every way.  But when I became sick, he was angry at me because he wanted me to do things that my body wouldn't let me.  It was hard enough for me to go to work every day and as soon as I got home, all I wanted to do was go to bed and he couldn't accept that.   Bottom line?  He could not handle me being sick.
 
If (and I don't like the "if" word) he was supportive and tried to help me, no, I would have never pushed him away, I believe I would have felt grateful and loved. 
 
What is interesting is that this all happened around 1996 and today we still talk and are friends.  He never said he was sorry for not being there for me but that's okay, he is not the type of person to express his feelings.
 
On another note, I think it's great that your girlfriend is making the effort to work in her yard. 
 
Lyme does strange things to people and I always said if one doesn't experience this disease then they really don't understand what the sick person is truly going through.
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 4/20/2009 4:46 PM (GMT -7)   
Hi again,
 
After re-reading your first post I just want to add that perhaps your girlfriend doesn't feel worthy of your love and that is maybe why she is pushing you away.   I am guessing she probably is so down on herself that she may feel she doesn't deserve any happiness. 
 
Have you bought any books about lyme disease?  If you honestly want to learn about this disease that may show her that you truly do love her and that you want to stick around even though she is feeling so sick.  I know that would have meant something to me if my ex-husband would have done that or even my family who thought it was all in my head.  My only true support system when I was sick were my 2 doggies. 
 
Just a thought,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 4/20/2009 5:09 PM (GMT -7)   

Hi Deftones.  I am sorry she has so many symptoms. 

It can take time to eradicate co-infections. If she did not eradicate them with her first round of treatment, they need to be addressed.  Many Lyme doctors believe the co-infections need to be treated first.  How long has she been on treatment this time?  It is good she is seeing a knowledgeable doctor, often that is half the battle.

Talking with others who are experiencing the same thing is not always right for everyone.  I am glad that she talks to her psychiatrist.

Keep us posted on how she is doing okay?


Deftones
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/20/2009 10:35 PM (GMT -7)   
Deejavu said...
Hi again,


After re-reading your first post I just want to add that perhaps your girlfriend doesn't feel worthy of your love and that is maybe why she is pushing you away. I am guessing she probably is so down on herself that she may feel she doesn't deserve any happiness.



Have you bought any books about lyme disease? If you honestly want to learn about this disease that may show her that you truly do love her and that you want to stick around even though she is feeling so sick. I know that would have meant something to me if my ex-husband would have done that or even my family who thought it was all in my head. My only true support system when I was sick were my 2 doggies.



Just a thought,

Denise


I do not have any books but we have watched under our skin together....i invited her to go to a screening of it where we live after our breakup but she refused to go. We spent the night together that night watching a movie or something at home but she wouldn't go out to see it with me. Theres another forum i've been on talking with a lot of people who suffer from lyme.

I would like to learn more, and i'm hoping i can tell her that and she'll be there with me to learn and teach more with me. When we were first together prior to her treatment i didn't know much about lyme and i think she made an attempt to suppress her symptoms around me so in all honesty i knew she was tired more often then most people but she hid everything else pretty good for a while. The depression and self esteem issues were the first thing that i eventually saw unsuppressed. Lyme is not the most popular disease with the general public and based on her actions I didn't realize how bad the disease is. As she has gone through treatment i've seen her get progressively worse mentally, physically, and emotionally and the realization that something really is wrong has settled in.

I guess she appeared to be fine, and we were both having so much fun it wasn't the #1 topic of discussion, we were exploring each other and figuring each other out. As this disease and treatment has taken over, lyme is not becoming the main issue, the #1 topic.

I think its important to her to be strong, and not appear to be depleted by this disease...u wants to put up that front like shes great and everythings fine. But the treatment has kind've beaten her down i think.

I rambled, but to answer I would like to learn more and intend to do so. I know i will never fully understand everything shes going through but to the best of my ability i would like to understand as much as i can so i can be the best support system she can possibly have.

Deftones
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/20/2009 10:37 PM (GMT -7)   
ticker said...
Hi Deftones. I am sorry she has so many symptoms.

It can take time to eradicate co-infections. If she did not eradicate them with her first round of treatment, they need to be addressed. Many Lyme doctors believe the co-infections need to be treated first. How long has she been on treatment this time? It is good she is seeing a knowledgeable doctor, often that is half the battle.

Talking with others who are experiencing the same thing is not always right for everyone. I am glad that she talks to her psychiatrist.

Keep us posted on how she is doing okay?


I believe the bulk of the co-infections were taken out during the first treatment

she is currently 3 months into her cycle, shes got at least another 3 months to go. This treatment is slower and at a lesser dosage b/c she was so miserable the first go around her doctor didn't feel it was necessary for it to be THAT dreadful. So it's drawn out longer but the idea is it being a little easier to cope with.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 4/21/2009 4:19 AM (GMT -7)   
Hi again Deftones,
 
I wonder if the Flagyl is possibly making her feel so bad?  I never took this antibiotic (I am a strong believer in alternative medicine as that is what worked for me) thus I do not have much knowledge about Flagyl or most antibiotics for that matter. 
 
I did read this and found it interesting as many of the side effects people listed are similar to your girlfriends:
 
 
Just some food for thought...   Hmmm, what do others think?   I know many members here have taken Flagyl so they would know better than me.
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 4/21/2009 4:46 AM (GMT -7)   

Hi Deftones.  I suggest reseraching as much as possible to make sure she is getting treated long enough.  Six months of treatment is not very long for someone who has been infected for several years.  The majority of Lyme doctors treat until the person is symptom free plus a few months longer.

There are some excellent books available.  I recommend "The Lyme Disease Solution" by Kenneth B. Singleton MD; "Cure Unknown" by Pamela Weintraub; and "Everything You Need To  about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner. 

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