All you moms with Lyme- can you give me some perspective

[sptcmom]

Hi all

So, I have congenital Bartonella.........wow. I mean I was aware it might happen ever since mom copped to having had a mice problem in the damp basement and getting a wild stray cat to help deal with it. The cat was nasty hissy scratchy type. dad also had a thing for rabbits and dogs and often took in strays. Im talking about early sixties here. All this years before I was born. Mom finally made him get rid of all the animals but I guess the damage was done. I clearly remember mom having episodes of rage, a very difficult marriage,etc. I've had a PANDAS like childhood or now I know a Lyme like childhood with multiple strep and mycoplasma infections every year, speech delays, rages, depression, difficulty with relationships etc etc- the works. Been labelled a mad genius, insane doc, crazy lady, personality disorder etc my whole life.

Now I know and it feels like Im in a coma all over again. I am so depressed. I pretty much lost my whole childhood and adolescence to being labelled as one thing or another and I wish somebody had known. It was during my internship and psych ward that my attending found me to be odd, we talked, he helped me for several years with my issues and we're still in touch. But he didn't know either, NOT a clue. He put it all down to borderline personality disorder, blamed it on a dysfunctional family and I believed it too.

My near fatal car accident three years ago reactivated the disease and I've been feeling like a wreck since then but blaming it all on my head trauma and nerve damage.and now this. I am just exhausted.

Anyways, I am unable to deal. I don't want and can't afford treatment. I feel its better for me to die than to live a defective life any longer. I will let it go.

Dr C. recommended family constellation therapy for me and I said I would try.....

Edited November 6, 2010 by sptcmom

[lyme_mom]

Oh spctmom hang in there! You can recover and you will appreciate your future healthy life more than the rest of us after all you have been thru. Remember it is darkest before the morning light. Being on the right antibiotics will make a huge difference. Give it a chance. I have a relative who was severely depressed and suicidal only to learn she has Lyme and bartonella. She does not know how long she had it but we suspect it has been many years. She also had dental infections that she didn't know about. She really improved on the right antibiotics and is still in treatment. Getting the right diagnosis is half the battle! U r not alone so please have hope. You should let a friend or family member know how bad you feel to gt extra help.

[JuliaFaith]

The Dalai Lama (sp?) says to always look forward what is past is past. Each day is an opportunity for learning and becoming a better person. It sounds like you have many opportunities for that right now. Live in the moment and learn what you can. Easier said than done, which a lot of people can identify with on this forum. A lot of us are struggling right now with all of this but it is important to keep it all in perspective. Good things seem to come out of bad.

 

Just realized the other day, that thru our struggles, others we know, are learning from us. Actually had a parent tell me that! So try to keep learning and in doing so you may be able to help others in the present or future.

 

Best wishes on a quick recovery, now that you know the direction to go towards for healing.

 

If you cannot afford treatment, ask for help and you may find that it is there. Contacting a LLMD and talking to them might be the first step.

Edited November 6, 2010 by JuliaFaith

[sf_mom]

Hang in there!!!! I understand your shock and the whirlwind of emotions of newly being diagnosed..... I know you'll be ready to regroup in short order. I can also assure you there is a much brighter future ahead with treatment.

[PacificMama]

Hi Jodie,

 

I wish I had something magical to say that would make you feel better right now. You have so many years of experiences that have brought you to this point: your childhood, your adult experiences trying to deal with the issues, and of course the time you've spent pursuing answers to your son's illness. And now you've arrived at a point where you are finding answers.. putting puzzle pieces together. And while that is invigorating, it brings all the hurt and anger to the surface too. It is just a whole lot to deal with all at once. You will feel better in the coming days once this settles in a bit for you.

 

I can't even begin to know the experiences of your childhood. But in general, one of the amazing things about becoming a parent ourselves is that we get a "do-over" of sorts for some of the wrongs we may have suffered ourselves as kids. That is, we get to do for our kids that which was not done for us. It's not quite the same thing as fixing the lost childhood you describe. But you are making sure your son does not have a lost childhood, and that is a wonderful and beautiful thing.

 

But still, at the end of the day, you are sick too. I hope there is some way that you can begin some treatment for yourself right away. Maybe you just can't do it all right now, but is there some way you and Dr. C can come up with a program where you start down that road? Bartonella is very treatable. You will feel better!

 

I'll put another plug in here for the local support groups. Maybe give them a call if you need to? They are certainly full of similar folks coping with the travails of these infections... many of them treating the whole family as lots are here too. But as suggested, please make sure you are talking to somebody in your life about how you feel.

http://www.lymenet.org/SupportGroups/UnitedStates/

 

Be well, and hang in there.

Mary

[tpotter]

Please, please talk to someone. I'm going to PM my telephone number to you. Getting on the right abx will definitely make a difference. My DS was suicidal before we found out that it was PANDAS/Lyme. The first time, he lost a volunteer position he absolutely loved, because of the OCD (we didn't know that's what it was), and I managed to talk him home by train...he was wanting to jump in front of a train or into traffic. We put him in a hospital, and it was horrendous. Psych meds did nothing for him, and even at times made him worse. Then we found out about PANDAS, because of Dr. K, and because my younger son had classic symptoms.

 

As horrible a time as we have been having getting treatment for the PANDAS this year, the first time he we put him on abx 2 years ago, and then again a 2nd time (both times instantaneously ragey and suicidal), was a miracle...he got better literally within hours! He continues to have other problems (like the joint pain, brain fog, and occasion minor rage, and other symptoms,) but has not had any more thoughts of suicide, and that is a beautiful thing.

 

Now, we find out that everyone in my family has Lyme...yes...DH, 2 DS's, and myself.

 

At first I was devastated, and all I could think about was "why can't it be easier." But, the reality is that it is easier, because now we know, and now we are all being treated. Abx are not expensive. We are all on abx and probiotics. I know your doc put your child on a lot of other things, too, but at least start with abx. I don't know what constellation therapy is all about, so I can't speak to that.

 

Please get on abx immediately. Please, please Call me at any time if you need to talk.

Edited November 7, 2010 by tpotter

[tpotter]

Trying to PM you. You're apparently full. I'll send you my number if you contact me.

[philamom]

Jodie-

I would be happy to attend a local lyme support group with you! They have monthly meetings where I'm located, but I don't mind traveling. Hang in there! Melinda

[tpotter]

Melinda,

 

Please PM me with information about location, etc.

[philamom]

Melinda,

 

Please PM me with information about location, etc.

Sending now.

[matis_mom]

Wow, I cannot imagine how you feel right now. To know all along there was something causing all this trouble. To know your mom probably had it too. To think if you had been treated your whole life might have been different... I would be so angry and confused. But at the same time, you know things can change, you know there is help out there. It might seem right now like you don't have the time, energy, or resources, but trust that it will happen. You will get better.

When faced with things like this I found it helpful to ask myself what is the purpose of this, rather than what is the reason for this. Not asking "why" did this happen to me, but "what for" What good is going to come out of this, who will I be able to help because of this, how much closer to God can I get by being in this situation.

Hang in there, you will get better. Like someone put it to me when I was feeling very overwhelmed about this whole Lyme thing (almost positive I had it while pregnant with my youngest, three other kids showing symptoms, etc, etc): EVERYTHING IS FINE, YOUR PERSPECTIVE JUST CHANGED.

So you could look at it that way. Nothing has really changed, the picture is the same, only now you can make sense out of it, and start fixing it up!

[momofgirls]

Jodie,

We all have these terrible low times in our lives and this illness can really bring us to our knees but I know you well enough to know that you have the fight in you to beat this for both your son and yourself and ok well for the husband too. None of us wanted to get on this crazy train. Its nuts but amazingly, through it all, one thing I have found are some treasured friendships that I would have never made had it not been for this disease. The bonds we parents share is unique and strong. You won't give up because you can't and none of us will allow it. I will be bugging you forever. Take a bath and relax once and a while because your son will recover. Dont let yourself go down in the process because he wants you well too. I will call and we will talk about getting you treatment. I am sure we will find a way.

Big hug

Kim

[dabel]

I do not know you but I want to say that things WILL get better. I have pulled my son from the brink in the past. I have seen first hand how mentally devastating these infections/disorders can be. I have also seen how with the proper treatment people get better!!! You will get better too!!! I know it is hard when you are in that trough but you have got to reach for the side, hold on, and pull yourself up! Not for just you but for your family! I am praying for you!!!

[Iowadawn]

Wow, I cannot imagine how you feel right now. To know all along there was something causing all this trouble. To know your mom probably had it too. To think if you had been treated your whole life might have been different... I would be so angry and confused. But at the same time, you know things can change, you know there is help out there. It might seem right now like you don't have the time, energy, or resources, but trust that it will happen. You will get better.

When faced with things like this I found it helpful to ask myself what is the purpose of this, rather than what is the reason for this. Not asking "why" did this happen to me, but "what for" What good is going to come out of this, who will I be able to help because of this, how much closer to God can I get by being in this situation.

Hang in there, you will get better. Like someone put it to me when I was feeling very overwhelmed about this whole Lyme thing (almost positive I had it while pregnant with my youngest, three other kids showing symptoms, etc, etc): EVERYTHING IS FINE, YOUR PERSPECTIVE JUST CHANGED.

So you could look at it that way. Nothing has really changed, the picture is the same, only now you can make sense out of it, and start fixing it up!

 

 

I love that: "What for?"

 

Remember: God DOES give us more than WE can handle in order that we will lean on Him and others. Take these gals up on a phone call. You are not alone. Keep leaning---Dawn

[lyme_mom]

Wow, I cannot imagine how you feel right now. To know all along there was something causing all this trouble. To know your mom probably had it too. To think if you had been treated your whole life might have been different... I would be so angry and confused. But at the same time, you know things can change, you know there is help out there. It might seem right now like you don't have the time, energy, or resources, but trust that it will happen. You will get better.

When faced with things like this I found it helpful to ask myself what is the purpose of this, rather than what is the reason for this. Not asking "why" did this happen to me, but "what for" What good is going to come out of this, who will I be able to help because of this, how much closer to God can I get by being in this situation.

Hang in there, you will get better. Like someone put it to me when I was feeling very overwhelmed about this whole Lyme thing (almost positive I had it while pregnant with my youngest, three other kids showing symptoms, etc, etc): EVERYTHING IS FINE, YOUR PERSPECTIVE JUST CHANGED.

So you could look at it that way. Nothing has really changed, the picture is the same, only now you can make sense out of it, and start fixing it up!

 

My son was sick for 2 years and three months and for the first year I was so worried about him and my other kids who had lyme that I felt like I was holding my breath, waking up each day researching what I needed to do to get them well and taking them to one appointment after another. I carried a lot of stress all the time. Then one day I realized this stress was going to make me sick and I that I needed to stay well to help my kids. I suddenly had a new perspective on what we were going through. I realized that lyme is so prevalent now that we were actually one of the lucky ones because we knew our kids had lyme and we were doing something about it with top lyme doctors. There are so many kids who are silently suffering with lyme who may not ever get the treatment they need because nobody knows they have it. These infections are out of control and we will have so many sick people with lyme, bartonella, babesia, etc. in the future. At least all of us will know how to deal with it after this ordeal and hopefully we can help a lot of other people get the help they need earlier b/c of our experience. It was a tough two years for sure. Even 18 months into it I wondered if we would ever be done with lyme. However we are all doing really well now and we are not taking antibiotics any more. Even if we have to retreat in the future for a short period of time I now know that you can get rid of these symptoms with the right treatment. All the Moms dealing with this need to take care of themselves so that they can help their kids. Hang in there!