Sad and confused... I need advice, please!

Hi Simela...............sorry you're in such a position. Being a guy I have now idea what you're going through emotionally, it must be a very difficult decision for you.

I'm sure your family would benefit greatly if you were feeling well, in all sorts of ways, and your 10 month old would survive just fine on er......powdered, formula or whatever it's called - bottled milk. Take your Doc's advice and go with his protocol and if your insurance will pay then that's even better. Get yourself girl, putting it off my hinder your recovery.

Whatever you decide I hope it's for the best for you and your family.

Mik.

Hi Simela,

It's a difficult choice, but if it were me, I would choose to do the rocephin. I had 12 IV rocephin treatments and they made a big difference. Today, my LLMD tells me I do not have an active case of lyme and I am feeling better.

You have done a wonderful job already of passing on the good antibodies to your daughter. Ten months of breastfeeding is terrific.

Mik:
IF I stop I feel I am betraying her. I feel an overwhelming guilt and responsible for not taking action during my pregnancy, when all the symptoms were screaming at me. I trusted my GP that my tests were false +. I don't know what was in my head. I didn't know this disease is so terrible and thought 3 weeks of abx cured me. IF I got her infected, I should give her my antibodies.

Yes, my family would benefit greatly if I was well, and my 10 month old would survive just fine formula But the thought that she may be infected and me letting her deal with this disease all on her own, when she is just a baby, scares me to death. Also, she won't take formula, that stuff tastes aweful, I have been trying and she spits it out!

Thanks for your thoughts!
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Caldonia

Thanks for your input, I am so glad that you are doing well. I am feeling better from the oral abx although 3 and 4 days ago, I needed a nap. I felt I will colapse. I think Lyme is messing up with my brain, I forget my bad days so quickly, and focus on the good ones.

Thanks also for pricing it for me before, I've read on another forum that 7 weeks of Rocephin costed someone $20000? Not sure if that person made a mistake OR did you have it done a long time ago and maybe prices went up?

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Agmaar

I wish I had my husband's support in this. He does not get it. I explained to him my dilema, he said switch her to formula and got angry with me that I could not make a decision on my own. That was a 2 minute conversation about it, that was all.  2 minutes today, some days longer, but not much longer.  I wonder if he is sick also, he has some of the symptoms, but didn't get tested.  He was on abx for a caugh that did not go away.  2 weeks after he finishes the abx, I will press him to get tested.  I cooked dinner, we ate it, then I tried to talk to him again, but he is unaproachable, he is sleeping and snoring on the couch in the LR, while I am trying to figure this out on my own, in the next room.
It is like he is blaming me for everything, like this is my fault.

How long had you planned on BF'ing? At least 2 more months, until one year, when she can have regular milk
How is your baby doing on solids? Very well, but doesn't take formula (she spits it out and I can't blame her, it tastes aweful) and is not old enough for regular milk; She still needs BF or formula for her bones, solids are not enough; I mash everything we eat in the blender and she is great!

Are you doing it for birth control reasons? LOL, no! I started having cycles after 2 mo of giving birth and sometimes 2 of them a month bec my lyme messed up my thyroid and God knows what else. My thyroid meds have been adjusted every 2 months bec no one dose seems to work, it keeps going up and down

Is it an important issue for feeling close to the baby? Yes, but not if BF hurts her, it is healthier for the baby and I am afraid if I stop nursing she will no longer get my antibodies and get sick (main reason). I had lyme before getting pregnant and did not go away through pregnancy, I was misled by my doc that the tests were false +.  Last month I was treated with abx for 6 weeks by my NEW GP based on the same tests that the previous GP ignored, no new tests; Now I am seing a LLMD that is treating me based on the same tests, no new tests were ran.

Obviously I don't expect forum answers to some of these questions - LOL, too late for that!  That is what is great about forums, you can pour your heart out!  I was holding back when I start it, but people talk about all kinds of things here, so no reason to hold back!

Before you have a line put in, isn't there a test they can do to be sure you'll tolerate Rocehpin? Also, there can be gall bladder problems with Rocephin and can it might not hurt to discuss gall bladder support with your Dr. NO ONE said anything about a test and gall bladder problems!  Thanks for bringing this up, I'd have to look into it.

This can be a sensitive subject so I hope I've handled this OK. Yes, thank you, I am looking for oppinions, and I realize they can vary, I just feel so aweful and feel I am betraying my baby girl IF she is infected and I stopped BF her. I feel so guilty by this and overwhelmed emotionally and that outweighs my lyme symptoms, right now.

Post Edited (Simela) : 10/1/2010 10:18:47 PM (GMT-6)

I just had rocephin last fall. It was $150 for 2 grams received at each outpatient treatment. I had a total of 12 treatments. Expensive? Yes, but my LLMD thought I needed it based on neuro symptoms. Keep in mind, this was not delivered by PICC line, but as an IV on an outpatient basis twice per week. I'm sure if it were PICC and given everyday, it would be more expensive.

Post Edited (Caldonia Sun) : 10/2/2010 8:17:24 AM (GMT-6)

Simela,

Has baby been tested and if so was she positive? Just curious...

I've often wondered, when reading some of your other posts, about why you'd be breast-feeding with Lyme disease, but now realize that it's for the antibodies... It seems so scary to me either way. I'm sorry for the position you've found yourself in.

I honestly don't know what I would do. I don't even know if I'd be able to hold my child to feed from my sick body, even if I was doing it for the antibodies. It's such a scary thing to think someone you love (let alone your baby) could get infected. I'm so careful not to even let anyone share my drink, use my toothbrush, bite from food I've eaten, etc.

I'm on the conservative side when it comes to drugs during pregnancy and/or breastfeeding. There's no way I would ever take anything unless it was absolutely and immediately necessary to save my life. But like others said, this is a personal decision you have to make, along with the guidance of a doctor you trust. I'm sure you will do what you feel is best.

Rachel

Since I'm obviously having a bad day and can't get anything done, I'm on the forum reading more than usual.

Simela, I understand your wanting to BF another two months. I also understand your not wanting to put the crap they call formula in your baby's body (have you ever read the ingredients????!!!!). I never had to know this or even research it, but is it possible to buy human breast milk through some kind of natural store or isn't there something called the LeLeche (sp?) League that supports and encourages breastfeeding? Anyway, that would 'buy' you the two months you're looking for and then starting the drug with the insurance company's blessing would be a no-brainer....

You have been through so much and since hubby is no real help, you have to weigh your options. I just thought I'd throw in an opinion.

HI Simela,
I'm glad to hear that you have come to a conclusion! That must have been a very hard decision!! Don't feel so bad about your sweet little girl & the possibility of her having these infections - you were only doing what you thought to be right. At least you have done your research so that you know what your little girl is dealing with!! You are doing the very best you can - I just know it!!

I agree with Agmaar on your hubby. Mine started out kind of like that too. I believe that they just can't handle the thought of their wife being so very ill & nothing can be done about it - at least not very fast. Now my hubby will openly tell people that I know more than the doctors around here about Lyme Disease & other tick-born infections!! The sad part about that is that it is true!

I think you have made a good choice on the rocephin treatment!!

Thank you, everybody! Still didn't get the word from my insurance company--perhaps today? Still waiting...

Runner,
I have 2 other children, so I know how kids feel about this, but as in your case, I did not know I was infected, my GP said the tests (3 Lyme tests at different times) were false +. They were not false +, they were +, but he was clueless and did not treat me. I don't know how stoping BF now will help her. I think it won't, and in fact it may hurt her, if she does not continue to get the Lyme antibodies. TOO LATE to do the right thing! I tested + for lyme since Feb 2009!

Oh, simela...I hear you...I am not saying it will do her harm to continue bfing, but more if *you* need those meds now and have to stop bfing in order to get them! I can only imgine what a hard decision it would be to have to make. I am sorry you even have to make it :( I think there are many in our shoes who had children, bf etc not knowing what was happening because our doctors told us we were fine...sigh...

I got the word:  I have been aproved for Rocephin by my insurance company and will start next week.  Not sure what the cost will be, but I am sure it is not nearly as much as out of pocket.

Caldonia:  What supplements did you take while you were on Rocephin?  How about probiotics?  Did you feel worse while on Rocephin or were you able to function?  I am hoping I won't get as sick as these people in Under our skin, bec I still need to take care of my kids, but I would like to know your oppinion, and make some plans, in case I get worse.

Anyone else, if you were on Rocephin, please share your oppinions with me!  I have been a mess for the past 2 days, and I am scared to start and scared not to...

I have called my LLMD, but he works at a different office today, so my chart was not there.  I have to call back on Tuesday to get some answers on supplements.  He wanted to give me a mixed IV of vitamins to boost my immune system when I saw him last month, but I felt like I don't need it bec I am already taking vitamins for nursing women.  He said this will also help with detoxing.  After I read an article on how magnesium and iron could be taken from the body to get the biofilms stronger, I did not want to do this mixed vitamin IV.  DId anyone do this and did it help with detoxing?

Thanks so much!

Thanks, Madrivergirl! My LLMD does not believe in biofilms. He said that is highly debateable. But my reasoning is, why take the chance? I think the downside of this is that my kids are so young, especially the baby, I do not get enough rest. So much to do and I can't do it when I feel sick, so when I have a better day, I play catch-up--I just never really do anything that I used to do as well and as detailed as I used to! It is very hard, bec I am so tired and they have soooooooooooooooooo much energy!