LymeNet Flash: success story

This is topic success story in forum General Support at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/3/23800

Posted by lymemommy (Member # 12495) on :

There used to be a spot for success stories, but

it appears to be gone, so I figured I'd start a

new one with my son's story.

About 3 years ago, my son started falling asleep

at the lunch table in preschool. He was 4 years

old, about to turn 5. I figured maybe he need to

get to bed earlier, or that he was having trouble

adjusting to the time change. I didn't know that

this was a symptom of a lyme, in fact I knew

almost nothing about lyme at all. A few months

passed, then on 4th of July weekend, my son

started running a fever of about 105. I took him

to the doctor and the ER, was told that some kind

of virus was going around. The fever lasted for 9

days, at about the 5th day he got a strange pink

rash spot on his chest. He was again taken to

the doctor, who didn't know what it was, but was

thinking along the line of juvelile rhemetoid

arthritis (JRA). She ordered bloodwork for

several different things, including a lyme wb.

Over the next few days,more pink splotches

appeared all over his body, until he had over 20

of them, on his chest, back, genitals, arms,

legs and face. Then the spots started to clear in

the center, and became the classic bullseye. I

called the doctor again, who felt strongly that

this was NOT lyme. Then following day, the WB

test results came in, and sure enough.... The doc

called, gave me the results, and said she was

going to call in an Rx for abx, that he would

take them for 3 weeks and be fine. She said there

was no need to bring him back in.

And that is how our lyme saga began. 3 weeks of

ABX were not enough, he could barely get up. We

were able to locate an LLMD, who recommended that

a second abx be added, to augment the

effectiveness of the first. He had his first

herx, which was horrible, but thankfully only

lasted one night. His symptoms over the next six

months included headaches, migrating jiont pains,

legs "too tired to walk", mood swings, physically

and verbally aggressive behaviors, light and

sound sensitivity, loss of sensation of pending

bowel movements, leading to total bowel

incontinence, and a loss of previously attained

reading skills. (I'm sure there were other

symptoms, but these are the ones that jump to

mind.)

After one full year of treatment, my son still

tested IgM positive for lyme. Most of his

symptoms had subsided, but he had persistant

night sweats. An EEG completed around this time

showed that he was having temporal lobe seizures.

He had completed kindergarten, but had struggled

to regain skills that he had at the age of 4. One

the plus side, he had regained sensation of

pending bm's, but he was resitant to using the

toilet due to all of the difficulties he had had.

The second year of treatment was a slow but

steady progression. His EEG's continued to show

seizure activity. The night sweats decreased, and

finally stopped by the end of the second year.

At this point, he started to titrate off of

medications, until finally he was medication

free. After 2 1/2 years, he was medication free.

His most recent EEG was "almost normal" and he

has no symptoms of lyme. He is now reading

chapter books, and is keeping up with his

classmates both physically and cognitively.

There is no guarantee that he will not relapse,

but for now, we will enjoy his good health, and

make the most of each day. [Wink]

Take care all, I hope that his story gives hope to others.

kp

Posted by Dekrator48 (Member # 18239) on :

lymemommy,

Thank you for sharing your son's story.

I am elated that he is doing so well!

Thank God that you were his best advocate to get him the real help that he needed!!

Big hugs to you and your son!

[group hug]

Posted by Jane2904 (Member # 15917) on :

Wishing all the best to your son.

Glad he is doing better [Smile]

. Thanks so much for posting. It gives me hope that our daughter will beat this.

Your a great Mom!

Posted by catskillmamala (Member # 12536) on :

Was your son on anti-seizure meds during treatment? Could you pm me please? I ask because my nephew is in treatment for lyme and he was having seizures at 7 years old.

Posted by daisyrlb (Member # 15686) on :

lymemommy, I can't imagine what it's been like with your little guy so sick in the past. I rejoice with you and thank God for his recovery. Thank you so much for sharing.

I believe every person on Lymenet would be inspired by your son's "story" and they should have the opportunity to read it. Many more people go to the "Medical" topics compared to the "General Support" topics. That being said, I encourage you to post your son's story under "Medical" as well, it's just that important to read about the Success Stories.

Perhaps change the title...hmmm...something like, My 6 year old finally abx free, why did it take so long? OR another topic title you think of.

I've noticed the topic title can make a big difference (I know it shouldn't but it does).

Your post will give hope to so many others who are suffering, and especially other parents with sick children. Often moms and dads post on "Medical" this way it gives them the chance to read about your son and his experience.

God bless you and your precious family.

Posted by lymers (Member # 21512) on :

Thank you for this story of hope. I have a 3 year old with lyme and coinfections (he was born with it).

This story is very encouraging. Thank you.

Lymers

Posted by BHealthyNow (Member # 22537) on :

Thank you for sharing. I worry that I have given my son Lyme, and if so, I am glad to hear this story of success.

Posted by Hoosiers51 (Member # 15759) on :

Thank you so much for sharing. You guys have really been through it, but your persistance paid off. Congrats!!! [Smile]

So happy for you. [Smile]

Your son was lucky he had a mom that knew well enough to take him to see an LLMD! Very lucky.

Would you mind sharing what antibiotics your son took?

Just interested to hear that part of the story.

Did he ever take babesia meds for the night sweats?

Posted by LightAtTheEnd (Member # 24065) on :

I'm so glad to hear that your son has improved so much.

Posted by DaveNJ (Member # 17362) on :

awesome....thanks for posting...about the only thing i can think of that is worse than me having this is a kid having this...poor guy...looks like he is fighter though.

Dave

Posted by sammy (Member # 13952) on :

Lymemommy, thank you for sharing your son's story. I've been feeling pretty helpless and hopeless today. It's good to hear something positive. Hopefully one day soon we will all have our own success stories to share.

Posted by Meg (Member # 22) on :

Congratulations!
Just wanted to send you the link to the Success Stories, (see below blue highlighted) and hope you will add this story there.

If you have any trouble, let me know, I'll post it for you [Smile]

Posted by daisyrlb (Member # 15686) on :

Meg, I just found the link too and was going to post it for lymemommy. So glad you did that.

I am still rejoicing at such a great report. I think it just effects all of us so deeply when a child goes through something like this. Such a good report. Big Smile!

Posted by joalo (Member # 12752) on :

Thank you so much for posting his story. It gives us all hope. [group hug]

It had to have been very difficult to watch him go through all of that. He is very lucky to have such savvy mother! [kiss]

Posted by Lymetoo (Member # 743) on :

That's so wonderful!!! Be sure it gets into the success stories link so you will help other mothers ( and their children ).

Can you believe ignorant drs are STILL saying 3-4 wks of abx will cure you?? Mind boggling.

Posted by venus (Member # 16991) on :

Thanks for posting. Those of us still fighting need all the success stories that we can find.

Congratulations on having the strength to see this through.

Posted by lymie42long (Member # 24164) on :

FINALLY A success story! I am the mother of 2 boys that have Lyme and I do also. Not sure if I passed it onto them or if, of the many times the y found ticks on themselves, or didnt, that they caught it that way, mabe both. Its sooo hard seeing my children hurt and in pain and not wanting to take the meds cuz "athey were fine befor all this medicne!" I am so happy for you, you caught it early and didnt give up whe some dr told you something that you just knew wasnt right. I commend u soo much. I pray to be posting similar postings soon!

Posted by lymemommy (Member # 12495) on :

Thank you all for your responses! It is a great relief to see my son finally off of abx and doing well, and although I will always worry that much more about every ache, pain, cough or sore throat, I beleive that we must revel in this moment of success.

For those that asked, his abx included:
ceftin, zithromax, suprax, mepron and planquenil,plus of course probiotics. He was very resistant to any type of powdery stuff that had to be added to something like yogurt, so naturopathic tx wasn't an option (the screaming tantrums to get any such think into him just wasn't worth it, and seemed counterproductive).

No, he did not at any point take seizure meds. He had absense seizures, not grand mals, and his neurologist did not feel that meds were appropriate. He had EEGs every 6 months, and they consistantly showed improvement, with the most recent being almost normal.

For those who suggested adding this to the success stories link, I have no idea how to do this, but if anyone wishes to do so, I am perfectly ok with it! My only request is that this post remain visable so that any who can get hope from it will be able to read it.

I remember what it was like when my child was at his sickest, and I know how important it is to hear that there is hope, that some do indeed get better, even those that have clearly progressed to the neurological stage.

Take care all!
kp

Posted by lymemommy (Member # 12495) on :

Oh, i should add this thought. Zithromax, even though it isn't supposed to be particularly effective against lyme, was the one med that my son seemed to respond to (when taken in conjecture with another med). He did better when he took it, and crashed when he was taken off of it, particularly with his digestive/bm problems.

take care,
kp