It's just upsetting to me. I was asking her tonight if she felt she was getting any better at all.. she has been in tx for about 5 months now I think. Did a few months of Doxy, now on her second month of Zith.
She had VERY strong herx reactions to the Doxy, had to ramp up pretty slowly.
So I asked about her muscle twitches and she says they aren't any better, but worse. She feels worse in general and then told me she wished I had never gotten her tested and started treatment.
I feel so horrible for her. She is depressed, and she has NEVER had that problem before. Over emotional, stressing out easy now, hard to concentrate in school. She was taking an important test yesterday in school and her eye twitched violently during the whole test so she could not concentrate.
I know I'm doing the right thing with getting her treatment... but I can't help worrying that maybe her immune system was handling it better and now I messed her up by starting tx? Before starting TX her only symptoms were minor muscle twitching (only started just before her dx) and odd skin infections. She was CDC + with just about all the bands positive. Neg. for Bart but Dr. thinks she does have it.
Her two siblings, also have Lyme. Her little sister has not started tx yet, and now I'm worried about starting tx for my 9 yr old.
I just feel really crummy. I don't know how to comfort my teenager. 5 months of abx and she is worse than before she began. At 5 months of tx for me I had noticed some improvements.
I feel like maybe I'm missing something. I just needed a sounding board.. thanks.
Posted by bettyg (Member # 6147) on :
icky
i'm so sorry you are feeling so low when you did the RIGHT thing!
it's so hard on everyone going thru this, and her getting worse means the spirochestes are being killed in her body; just not as quickly as she and we would like to have it done.
i'm NOT a parent with lyme so can't offer any perspective there.
has she ever visiting caring bridge site; we have 2-3 TEEN members: sami and alex h.
there are teen posters here too; ask you daughter to go to SUPPORT forum, and ask for teen members ... just a suggestion.
best wishes and better days, months, and years are ahead; we just don't know WHEN! hugs
alex's uncle mike posts for her, 15, since she has been on a ventilator/paralyzed the last 2 years. her video is in SUPPORT FORUM in my lyme video collection ... just look for iowa's alex hermstad.
Posted by Veromia (Member # 22031) on :
Oh my gosh Ickyticky I feel for you so much, more than you could think.
My daughter is 2 today. she tested CDC pos in july,
I gave it to her congenitally.
I have her antibiotics, I got them yesterday. I am so nervous to start them .
For a reason that is similar she is healthy and i dont want to throw that off.
The only thing she says is that her tummy hurts all the time, -doesnt eat well
-has persistent diaper rash of bacterial nature hmmmm wonder what that is? clears w antibiotic creams
-is lethergic in the morning
-has a rash on her neck that appears and disappears looks like a birthmark, this is a congenital lyme symptom
(when I saw the rash when she was 3 months old, I had read about it and knew what it was, didnt want to believe it)
So you know no swelling in joints and no over all flulike condition.
If you didnt know what we know she seems so be thriving.
I never want to let her get where I am.
That is what makes me believe i should do it.
Ickyticky maybe your daughter's bart came to the forefront because on the Lyme treatment.
Can she take clarithromycin? it may be easier on her and it has been very effective w me.
Posted by feelfit (Member # 12770) on :
Ticky,
It happens that way with some of us, we feel worse after starting treatment for a long while.
That doesn't mean that you are doing the wrong thing. Your daughter exhibited a lot of bands...I think this is a good thing! It shows that her body is recognizing the infection and producing antibodies!
As a Mother, it must be tough to watch your child suffer, become worse, but I believe that good days, awesome days will follow.....and treating now, means that she may not end up like many of us here down the road.
Your love is what guided you, no guilt there! Chin up, and hoping that your daughter starts seeing some wonderful days soon.
Feelfit
Posted by lightparfait (Member # 22022) on :
Icky,
I understand...as I went through this with my daughter for her whole high school years!
Finally diagnosed at Christmas of her Sophomore year, and treated for 1 1/2 years until final remission in the Spring of her Senior year.
There is hope. She is young and her immune system is just working over time along with these infections.
It is mostly an emotional roller coaster for her and you, besides the actual feeling lousy symptoms. They just feel like their fun years are slipping away, and too sick to enjoy anything! It's depresion!
The grades slipping make things worse! My daughter did not want me to tell anyone at school...as her pride would not allow others to think she was disabled mentally or physically in any way. Way too embarasing for her.
She was a very high level competative athlete at the time of coming down with symptoms.It affected her performance and self esteem.
Her ambition, and competative spirit kept her going, but she would vent and lash out at me, and try to just stop tretment!!!IT was too much at times. Pills would be strewn all in her backpack...when I thought she was taking them at lunch! She rebelled.
She took some breaks...just from taking the 20 plus pills, etc that she gagged on daily. I had to keep on top of things, to say, let's start again this week...and organize it all for her, and basically spoon feed her the regime!
I had to finally intervene with her grades, and spoke with the teachers, and administrators, that were very helpful, once I told them. It was too late for us to get on a IEP PLan. This would have been very beneficial for her grades...but we needed to not to it earlier, as the psychological effect would have been more detrimental for her.
Also she made some spontaneous poor decisions, just to have fun, that impacted her negetively. We had her finally visit a psycologist/councelor, which made the largest impact. I highly recommend it , and now wished I did this much earlier. Being different than your peers in very hurtful internally to our kids. Don't let her be alone handling this. I did, and thought I was enough for her to vent to...but I was wrong.
You have to evaluate this. How our children feel about themselves is crucial to their healing. They need to know we support them and listen to all they tell us. But we also have to be strong and guide them with this extensive treatment plan.
Being strong was my challenge, as I was treating myself as well!
This is what worked for us:
Treating her co-infections first (and later finally finding out she had RMSF, as she was not tested for this originally, and held back her healing)
Taking binders to eliminate major herx length, like Cholestramyne, especially the week before menses. This took away the migrains, eye pains, and twitches in eyes for her.
Taking little breaks with the antibiotics...and then adding detox type natural protocols after cleared from co-infections.
And finally, when her co-infectins were gone, we chose not to put her on the IV for lyme, as she was feeling much better, and it was summer with the sun and beach fun, and we wanted an antibiotic break, and would evaluate in the fall...so we started the Allergie Immune therapy from Germany. Have seen major relief in emotional problems, focus, and anxiety/depression symptoms.
During this time, the lyme has gone into remission, as her immune system is finally working! We never had to treat the lyme alone after the co-infections. Found that many of her symptoms that I thought were lyme alone, were also related to parasite/ heavy metals/ and chemicals that are now clearing!
Although I know that lyme could re-emerge...it was a good thing to stop at that time, learn about our toxic load and remove this naturally, and she has been feeling well with no lyme symptoms or herxs at all this summer.
She is in college this month, and all reports are good so far!
There is hope, but when you are in the middle of it all, it is overwhelming...
It is hard to compare to others as well, and I am not giving you false hope, just know you are being guided in the way for you and your daughter.
Just hang in there and keep with the plan and use your intuition of when treatments need adjustment or breaks.
Emotional healing is a bigger component than I ever thought in our healing! Search this out for yourself as well, as this helped me cope.
I will be praying for you and your daughter during this time! You are not alone!
LP
Posted by Kathryn (Member # 17034) on :
Ticky,
Hang in there. I was where you are a year ago. My daughter (also a congenital Lymie) is so much better than she was. But it has been a hard year on us both. Actually it has been hell and there have been times I did not think we would ever see improvement. But things have improved more than I dared to hope for.
My daughter started showing symptoms at 18 months of age. I've taken her to 17 doctors to find a reason my daughter was so sick. I showed local pediatricians her round red rashes that only went away when she was on antibiotics. I asked specifically about her having Lyme Disease. Of course, I was told there is no Lyme Disease in Tennessee. She had constant joint pain - but of course, that was growing pains. She had Anxiety through the roof, but therapists could find no emotional reasons for her to be anxious or depressed. Then she started getting purple stripes all over her body which of course was just "stretch marks".
In Oct 2007 she became so ill that she could no longer function. In Aug 2008 I finally took her to the Ped LLMD in CT where my now 13 year old was finally diagnosed and began treatment. She had a CDC positive Western Blot, Bartonella and Babesia. She herxed heavily, with a lot of both physical and psychological symptoms, for many months.
A year ago, she couldn't meet with her home-bound teacher due to her high level of touch, light and sound sensitivities and huge waves of anxiety. She basically lived in the dark, wrapped in a sheet, in her bedroom. Around December she slowly started to improve. She still isn't back in school - but she is doing all the assigned work and is able to have friends over at times - and even go to church and out with friends. She has had several days when she said she thought she felt "normal". There is still a lot of healing to be done, but Dr J says she is "fixable".
Your daughter's treatment will be hard at times, but she is so lucky to have a mom that is getting her treatment now so that she doesn't have to be sick all her life.
The "silver lining" to our story is that when my 13 yo was finally diagnosed, it lead us to treatment for my 19 yo who had suffered for 4 years with panic attacks, migraines, and severe fatigue. She is now in college and doing well - except for having the H1N1 flu.... Now I'm being treated for Lyme & coinfections that I may have had most of my life...
Again, be hopeful and take one moment at a time. I'll be thinking of you and wishing you quick success.
Posted by AliG (Member # 9734) on :
Perhaps you should talk to LLMD about possibly trying a different ABX. Oral azithromycin has very little (if any) BBB penetration.
I went into a wicked backslide on oral Azithromycin. It did absolutely NOTHING to help with the neuro-lyme.
Also, yeast overgrowth can cause/aggravate neuro symptoms and depression. You'll want to keep an eye out for that.
I don't know where in her teens she is but depression can be a common occurrence in early teens with all the hormonal stuff going on.
It probably would be a good idea to try to find a local support group for her. There may be parents of other teens that go to local meetings. If she can find another teen her age to talk to, I would imagine that could be very helpful.
Posted by Nicole_Denise (Member # 20620) on :
Hi Ticky,
I'm sorry to hear your daughter is feeling so terrible. I contracted Lyme as a teen (I was 18), and I have just started treatment (I'm now 20). I don't still count as a teen, but I can tell you that starting treatment has made me feel much worse too.
My symptoms were also very mild before I started treatment- but they were getting worse. Although your daughter's immune system may have been handling things ok, it could only do so for so long before it would give out.
When I first started researching Lyme disease, I found many, many stories of people who's symptoms were mild for years, until they hit a breaking point and their health suddenly plummeted.
It can be tough when treatment seems to make things worse. But mild symptoms doesn't necessarily mean a low-level of infection- it just means your daughter was better at fighting it than most people.
My advice would be to help your daughter research Lyme disease and lyme treatment. If she has the information, and is able to come to the decision that treating was the right thing to do, on her own, then perhaps she will start to feel better about treatment.
Has she (or you) read "Cure Unknown" by Pamela Weintraub? I would highly recommend it.
Edit: I just wanted to add that for me, one of the hardest things was coming to the realization that I really was "sick". I didn't look sick, the Dr.'s said I wasn't sick, and until the last 8 months before I started treatment, I could ignore my symptoms enough to pretend I was healthy
Posted by njlymemom (Member # 15088) on :
sent a pm
Posted by lightparfait (Member # 22022) on :
Thanks for sharing your insights NIcole! It helps Mom's understand what young people think.
I see what you mean about researching on your own, and making up your own mind and decision for treatment.
I think some of my problem wit my daughter is that she was wanting to finally have some independence in thoughts and actions from me, and now felt more trapped as she knoiws inside she needed me for help.
The 15 - 18 year olds just don't seem to put much effort into researching anything that is not in the fashion magazines or on facebook! Especially anything that their mother recommends.
It would be nice if lymemet started a special category for young people's support.
Posted by glm1111 (Member # 16556) on :
Please look into treating her for parasites and worms. They play a MAJOR role in Lyme disease. Check out
Also do a search on here and type in parasites and Lyme. It makes me so sad when I see how the children of this disease are suffering. Sending healing thoughts,
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