I was so angry to learn recently that I had lyme because I had been told by a top dr. in the '80s that I was cured. I then had two children and just found out they also have lyme. The are both ill and we are all at different drs. offices about 2-3 times a week.

My older son has gone from an A student to F's and is falling asleep in class. He crys everday at school and not one child in his class has any idea why he seems so different and doesn't have many friends.

My youngest son can't go onto Kindergarten because he can't even spell his name, doesn't know the alphabet and is not considered potty trained because he has so many problems due to his urinary/GI problems and has had a bladder infection since August.

We won't be able to see Dr. Jones until July!

The devastation of this disease has affected my whole life and family. I still feel blessed and feel that things could be worse, but I still feel has though we (lyme patients) endure an amount of suffering, confusion and pain that is difficult to put into perspective on some days.

I continue to pray and have always believed in a plan larger than my own, but please, the atrocities of the politics, ignorance, incompetence and negligence really gets to me on some days. I guess today is one of those days.

Just wanted to talk out loud, but I am very curious as to how many moms believe that they are in similar circumstance to our family. As time slips by I realize how much of a social life we have lost because of the time that we need to put into managing the fallout of the disease to our family. We have fewer and fewer people calling us...I think that because people don't know what to say and they kind of don't really want to deal with it either. It's too odd for them...they don't know how to act or what to say. I wish people (my old friends could just treat me like I am the same person....with a cane.)

I guess by hearing from other families, I might not feel so alone.

Thanks for listening. A friend in need.

I can only imagine that one of the few things worse than having a chronic illness like Lyme is having a child or children with it. I am so sorry you have to endure that pain, and I really hope that you don't carry around any guilt as a result.

I have a 16-month-old son, and a baby on the way. When I was pregnant with my now toddler, I knew that my body wasn't functioning normally, but no one could tell me why at the time. I didn't know about lyme, and as a result I obtained no treatment. My son does not display any symptoms typical of a lymie, other than hyperactivity, but he's a toddler boy! Still, there are days when I feel he isn't acting completely like himself, and I am crippled with fear. I worry constantly that the lyme may be dormant in his system, or that I am just missing something. It has caused me to miss out on some of the joy of being a first-time mom, and raising my little boy.

As for my baby on the way, I am being treated with 4500 mg/amoxicillin a day throughout the 9 months. I am seen by my regular obgyn, as well as being in consultation with Dr. Jones, and going to a maternal fetal medicine doctor. Unfortunately, 2 out of 3 doctors here are totally ignorant about lyme, and Dr. Jones is all the way in CT and is incredibly busy! The other two can, however, follow the pregnancy closely to make sure there are no signs of infection getting to the baby at this point, although that isn't fool proof and I obviously won't know for sure until after the baby is born. Again, this has been an incredibly stressful time, and I worry--oh do I worry! I feel pretty good about the chances of this baby being healthy because I have been diligent with the treatment, but there is always that fear.

I really do wish you and your family the best. I am not religious, so I can't comment on that aspect, but I do believe in the will people to live, the strength of support from those around us, and the ability of our bodies and minds to grow stronger. Hang in there.

found out i had lyme when my son was little nad dr. jones treated him as well...he \s much better adn free of babs and lyme according to tests adn symtoms now, but still has cognitve and learning problems...although his adhd has gotten better...

I'm heartbroken to know i passed this to jordan..wished i could've helped him sooner...

quote:

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Originally posted by Paisley:
dear moms,

I was so angry to learn recently that I had lyme because I had been told by a top dr. in the '80s that I was cured. I then had two children and just found out they also have lyme. The are both ill and we are all at different drs. offices about 2-3 times a week.

My older son has gone from an A student to F's and is falling asleep in class. He crys everday at school and not one child in his class has any idea why he seems so different and doesn't have many friends.

My youngest son can't go onto Kindergarten because he can't even spell his name, doesn't know the alphabet and is not considered potty trained because he has so many problems due to his urinary/GI problems and has had a bladder infection since August.

We won't be able to see Dr. Jones until July!

The devastation of this disease has affected my whole life and family. I still feel blessed and feel that things could be worse, but I still feel has though we (lyme patients) endure an amount of suffering, confusion and pain that is difficult to put into perspective on some days.

I continue to pray and have always believed in a plan larger than my own, but please, the atrocities of the politics, ignorance, incompetence and negligence really gets to me on some days. I guess today is one of those days.

Just wanted to talk out loud, but I am very curious as to how many moms believe that they are in similar circumstance to our family. As time slips by I realize how much of a social life we have lost because of the time that we need to put into managing the fallout of the disease to our family. We have fewer and fewer people calling us...I think that because people don't know what to say and they kind of don't really want to deal with it either. It's too odd for them...they don't know how to act or what to say. I wish people (my old friends could just treat me like I am the same person....with a cane.)

I guess by hearing from other families, I might not feel so alone.

Thanks for listening. A friend in need.

paisley

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I have had lyme disease probably about 37 years. We just got diagnosed last year.

I am 35 years old almost 36 and I have never had a child although I have been married 9 1/2 years. Now I know why I have not been able to conceive.

I am in a position that is not the same as yours but also I have questions and grief about ever being able to conceive, carry to term, and deliver a healthy child. Due to my age I worry about time running out. I am getting much better and the treatment for Lyme is working (thank God) but I fear I won't be well enough or if I am having to take antibiotics during the pregnanacy.

All my friends and people much yonger are having babies so easily....Each baby shower and new arrival is hard for me....

Can anyone offer me hope regarding this? Am I unrealistic to think I may achieve a remission enough to carry a child?

The progress I have made so far is really amazing, but I still have yucky days and don't have all the energy I did before.

I was diagnosed w/Lyme 4 years ago but had problems for maybe 22 years, that were not diagnosed.

In the last 18 years I have had three children. All three test positive for Lyme (2 of us are CDC positive, the other 2 have positive Lyme-specific bands) and all three have had health problems. My middle child, who also had insulin-dependent diabetes, has been the sickest child. Interestingly, I was sickest during pregnancy w/her and had some weird things happen like losing my vision, attacks of weakness, heart issues etc.

I also breastfed all three kids for almost 3 years. Thought I was doing the best I could for them this way...

I didn't believe in transmisson in utero or by nursing but can think of no other explanation for the sickness in our family. The Western Blot IgM's are positive, which most doctors interpret as meaning recent infection (although LLMD's know it can be continuing older infection).

So our family doctor thinks mice are bringing ticks into our home and that we are being bitten all the time. I have only seen a tick in our house once in 15 years. A brown dog tick brought in by the dog.

Our poor dog hasn't left hot top in 4 years and we never go in the woods, My children don't do school hiking trips or anything that is even possilby going to involve ticks.

I was diagnosed with Lyme in January. My LLMD said it very possible I gave my kids Lyme. My kids are 14 and 18. Both did OK until 6 years ago.

My husband just found out last week that he is CDC positive.

I'm right there with you! I was diagnosed last August by my GP and ironically, my 8 year old daughter started having horrible joint pain and full blown lyme symtpoms one month later. At that point I knew she probable had lyme.

Her whole life she had stomach problems and I kept thinking there was some under lying factor but could never figure it out.

As it turned out, she is CDC positive and my husband and I are both positive.

My daughter was in dance company and had to give it up because of the amount of pain. I certainly can relate to having no life. We hardly ever go any where and it's hard to make plans.

Most people in the state I live in have no idea what lyme is. I've even heard comments like lyme doesn't exist in this state.

Paisley, I've asked myself 1000 times why this has happened to us and have continued to pray!

I agree with PAB continue to call Dr. J's office constantly. Is there another doc you can see until July? I know doc J will consult with other docs and maybe if you could find another LLMD for your children Dr. J can help.

I understand your frustration! Hang in there...it does get better.

Pippy,

I was married almost 9 years when I had my daughter. Prior to that, I had 2 miscarriages one at 17 weeks and could never figure out what was going on. Ten years ago I was diagnosed with endometriosis. Since treating lyme, my endometriosis has been doing much better except for a few flare ups.

thanks for your support...It really does help me because I do feel so alone with my illness and our family situation. I do carry some guilt, but I also feel like the gov't is responsible, because they were aware that my lyme had not been cured. The CDC originally diagnosed me and knew that I was probably still sick. However, I do have high hopes that we will all get better in time.

Try not to let the fear prevent you from enjoying being a new mom. I consider you lucky, because you are at least aware of what your are dealing with. You can watch your children with lyme-colored glasses on. If that makes sense. In other words ....you know what to look for.

My ten year old didn't really display any ususal symptoms except for many ear infections and then later his ADD. He started showing more neuorpshych issues when he was seven. My four year old has been sick since birth, but it was his lyme rages that really indicated to me that something wasn't right. He is ADHD.

It's great that you are on abx. for your pregnancy. I hope and pray with you that it will make a difference.

Trying not to worry is close to impossible. We have to just put one foot in front of the other each day and do the best that we can with their medical attention. It sure gives us a different perspective than others who don't have to worry about this disease.

Hang in there as well. Hope that you are feeling well. Enjoy your pregnancy if you can.

Sunshine,
I'm sorry to hear what you have gone through as well. That is incredible..I had not heard that women couldn't get pregnant because of lyme. Thank goodness you did get a diagnosis and I hope that you haven't been ill too long and that you can get some relief and health back soon. Thank you for your support.

Lisa,
Sorry to hear that you have gone through something similar and my sympathies for your miscarriage. Glad to hear that treatment worked for Jordan. It breaks my heart also to watch my children suffering. I think I passed Babs onto my children as well...we haven't tested yet for co-infections. I do know that my children are extra compassionate children because of our illnesses -- they see the world a little bit differently. It will probably happen to Jordan as well...these children are especially special. Thanks for replying.

Denise,
Thanks for your support. My son is 10 now too. He was 4 when we started experimenting with all kinds of meds as well. He went from ADD to ADHD. He doesn't know if he is coming or going at this time.

The seizures adn vomiting would worry me. I was throwing up quite a bit while I was on doxy if I didn't take it with food. Is he still on the doxy - it's very rough on the stomach?

Hope you get some answers soon.

ArtnSoul,
Again, sorry to hear that you are going through this with your family as well. I thought I had it a long time with 20 years. Thank goodness you finally got diagnosed. Do you think that you got it from your mom? How are your children doing?

Pippy,
I did not know that women were having problems conceiving because of lyme - that is incredible. My own person (non-medical) opinion is that you could get well enough to have a child.

I was very ill when I happend to get pregnant with both children, so I would imagine that if I could carry to term someone who was more healthy than I was would have better luck. I was also older 32 and 37 yrs. old when I had my children. And, again, that was before I had any treatment for lyme.

Adoption is a great idea if things don't work out. Pregnancy and delivery are interesting, but they don't carry the majority of the feelings about having a child. It truly is just the love for the child that you think about all the time.

My health went down hill with the pregnancies--so we haven't ever had a "normal" life together. I always thought we would spend afternoons playing basketball or passing a ball. We need so much sleep we can't get all the work that needs to be done around the house done let alone be at work and have any kind of social life. We sleep about10 hours a night (all four of us).

It is just sad. We don't hike or canoe. It's not the childhood i thought they would have.

Pippy, you have time to have a baby. Have yout thyroid checked. I had the second one at 37. It will be o.k.

Alos my boys seem o.k. cognatively--it is the hullucinations and stuff that freaks me out. How do you explain that to a seven year old? But I told my son today that something bad sometimes turns out to be something good. That he may grow up to be a scientist or doctor or talk to other people about LD. O.K.--I'm pushing the college jobs. But we have to keep our hope and our faith.

My husband does not believe that it is possible to contract from me (denial!) but he did go in for testing last week - for my birthday. Whatever it takes - that's all I asked for.

My 10 year old is going downhill faster than I thought possible. He acts infantile at times. And last night I thought I was going to have to go to the ER because of an asthma attack. He does not look well. Neither children are doing well. My 5 year old is back to wearing pull-ups because he can't hold his bladder.

It just makes me sick on some days to see and hear about these children suffering. My 10 year old came in tonight to ask me if lyme disease is fatal. I consider these children special warriors.

And I also think it would not have been a good place or time or father for a baby. I would not have gotten an abortion if I had known I was pregnant (I would have had a lot more food and vitamins had I known), but maybe it's for the best in my case and the baby's case.

But I really worry about what will happen when I try to have kids later on. I'm 21 but I'd like to have kids when I'm about 26 or something, after university. I just hope I can find someone who can treat me before that.

At 2 years, doctors told us he probably was retarded or had PDD because he wasn't talking and had tantrums all the time. But in reality, he was having tantrums because he was very intelligent and frustrated that he was having trouble learning to talk. He still has Lyme rage, but is very sweet, loving, and smart as a whip.

We count ourselves lucky that we have been sick so long and don't have worse problems than we do.

I have a daughter two years older than my son. She has no Lyme symptoms so far. She was born 6 and 1/2 weeks early. Before that, I had a miscarriage.

I breastfed both of my children for over a year.

- Kate D.

quote:

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Originally posted by Paisley:

ArtnSoul,
Again, sorry to hear that you are going through this with your family as well. I thought I had it a long time with 20 years. Thank goodness you finally got diagnosed. Do you think that you got it from your mom? How are your children doing?

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Paisley,
I, as well as my LLMD think I was most likely infected when I was 3 years old.

My whole family did a lot of camping when I was little - although I could have been bitten anywhere.

When I was 3, I got this strange rash on my torso. I also had a high fever, swollen red painful knee joints, sore throat, etc.

Our family doc didn't know what it was - guessed it might be rhuematic fever - but said the "rash" was different. This was in 1966.

He even got two other drs. opinions and they weren't sure what it was....hmmmmm??

Since then I had a LOT of physical problems that would take up a few pages...some were
mytral valve prolapse, arthritis diagnosed in my knees as child - that would mysteriously disappear and come back later,

I was always tired, something always hurt. One year, I missed over 80 days of school.

When I was a kid, all the neighborhood kids gave each other nicknames using our initials. Mine was Aching Joints - sad but true!

It's the hardest dealing with seeing what my kids are going through - I wish I could take it from them...

Thanks for asking about them - My daughter is 18 and she has a LOT of physical problems as well. She has heart issues because of the lyme, interstitial cystitis, migraines, stomache issues, excema, fatigue, etc.

It's really tough for her right now, because she hasn't been able to keep a job because of her health.

She wants to go to college to be a Christian psychologist - but that is on hold right now.

My son is 16, and he has a neurological disorder that causes him to have involuntary muscle movements. All the docs we've had him to - have never been able to give us an exact diagnosis.

Since his lyme diagnosis and being on antibiotics - he is having fewer episodes. Which is good news. Our LLMD thinks it may be lyme-related. He also has ADHD.

He also has issues with hip and back pain, fatigue, he's had blood clots a couple of times(scary), and his skin doesn't heal well.

Since being on antibiotics none of us are having problems with chronic sinusitis or bronchitis - that's a plus.

I homeschooled my kids, which is a very good thing, otherwise they would have missed a LOT of school.
ArtnSoul

quote:

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Originally posted by dafje:
I'm not sure. I was bitten and got Lyme when I was 13 and not doing well. I was raped at age 13 and had an eating didorder (as a result). Doctor said I wasn't having my periods because I had lost so much weight. But then 3 months after, I miscarried. I don't know why. I've blamed it on being anorexic, not that I was so ultra skinny but I didn't get enough vitamins I think. Also I was very young of course, I don't know if that could have caused it. After reading about Lyme I don't know what caused it. I'm not sure if it matters anyway - it won't get the baby back...

And I also think it would not have been a good place or time or father for a baby. I would not have gotten an abortion if I had known I was pregnant (I would have had a lot more food and vitamins had I known), but maybe it's for the best in my case and the baby's case.

But I really worry about what will happen when I try to have kids later on. I'm 21 but I'd like to have kids when I'm about 26 or something, after university. I just hope I can find someone who can treat me before that.

Please don't respond to this message saying stuff like I should have had an abortion anyway. I feel that's my decision and nobody else's business. Besides it won't make any difference if you convince me. If you have anything else to say about it please do, but please put it in a friendly tone of voice as I'm very sensitive about this. I've once told this on a dutch forum and I cried for an hour after reading things like you should have killed it anyway, or it's not even anything yet at 3 months. It has fingernails, it's something (my opinion).

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I just read your post and it broke my heart.

You are a strong woman and you have been through more than most 80 year olds. Do not let anyone, ANYONE ever second guess your decisions. They are not in your body.

Please do not feel guilty about your baby. You were just a baby too--you did the best you could.

If you ever need to email me please do.

But truly, God loves you so much--whatever your decisions and life experiences--that never stops.

The fact that you would NOT have gotten an abortion shows just how very strong and loving you really are.

My child is now 13 and fine. Recently I had her checked at MDL lab: C6, Lyme ELISA, Lyme Western Blot and Babesia titer. I did this for my own piece of mind. All tests were ok.

After childbirth (c section-breech) and 3 yrs of nursing I was always tired. Then 2 ok years and then menopause allowed my TBD symptoms to explode. HRT helped a bit and I was mucking along then in Oct 2003 I shattered my wrist and had 2 repair surgeries. Downhill since then, lots of ducks , asked for a Western Blot Oct 2004-Lyme positive. I am getting better on abx. Hopeful about the future.

If I ask nicely I can always get a copy of my test results.

What test did you husband have done? Negative CDC Western Blotss may include Lyme
specific bands. They are 18, 23, 31, 34, 37, 39, 83, and 93, according to Dr. Jones.

My family situation is also very trying. My daughter is 13 and has quite an attitude. My husband is totally unsupportive and refuses to get tested despite the info I gave him about sexual transmission.

My husband was not at all interested about me being sick or, after I finally found out what it was, my Lyme.

At least not until he started realizing he was showing symptoms.

Now I have found out he has been searching about Lyme at work. His symptoms have gotten worse and new symptoms have started.

He asked me the other day what I thought about rife machines. I was shocked!

So now he takes Lyme seriously. He helps more around the house and lets me sleep in on the weekends. Still isn't very sympathetic most of the time. But he's slowly getting better about some things.