t9im
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posted
Our daughter (10 yrs old, with Lyme for 8 months) saw Dr. J on Friday and just started Zithromax & Mepron for Babesia.
We waited till this AM to start the drugs due to obtaining mepron / having blood work drawn first and alergic reaction (this AM vs. last night).
Any other parents with experience with Dr. J on treatment and what we can expect?
Such as reactions to drugs, how long on this and then what may be added after a few months? Also did you give the combination drugs at same time of stagger them?
Dr. J wasn't that forth coming as to what we can expect except the average treatment period is 3 years and that he treats with drugs till symptom free and then 2 months.
Part of this is we may not have been ready to ask all the questions.
One of our main concerns is if this is 1 to 3 years and Dr. J isn't around throught the full course what is his plan.
Any feedback / commnets is appreciated.
Tim
** edited to remove doctor's first initials, and med dosages **
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Jane2904
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The liquid Zith is only good for 10 days, you have to keep going back to obtain each batch.
Check with pharmacy, but your child will probably be on this for awhile.
Check out Costco, they are much cheaper then regular pharmacies and you do not have to be a member to have prescriptions filled.
Your in good hands with Dr. J.
We always start one med at a time for our daughter to see how things go.
Best of luck to you and your daughter.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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t9im
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A brief descriptions of symptoms are:
fatigue, fevers (low, normal in AM, then move to 100 to 101 later), tingling numbness legs and arms (started in Feb in feet and progressed),
joint ache / tender (swelling recently), feet hurt, breating issues, blue around mouth, sweats at night, agitated sleeping,
bone pain (she never complained on this but Dr. J discovered it on exam).
It took 8 months as from the pediatrician who didn't treat due to no rash, to the Infectious Disease MD (at local childrens hosipital) to Rheumatologist to Neurologist (at different childrens hosipital) to family doctor (who did indicate tick like symptoms).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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posted
Thanks Jane
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Jane2904
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Yes, so sad the journey we all make to get our children well and for all they have to endure.
Dr J and his staff are wonderful.
Don't forget to give her probiotics.
Good luck
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
My son was 4 when infected, presented with classic symptoms, (circular rash, flu symptoms). Despite that, was misdiagnosed until his knee blew up and couldn't walk at age 5.
Only received standard protocol from pedi & when he didn't get better, we were shuffled from specialist to specialist to specialist.
His symptoms were joint pain/swelling, tingling in face, vomiting daily and visual issues. Hallucinations that turned into complete periods of vision loss when he was age 6. That is when we sought out Dr. J.
He tested strongly positive for lyme only, no co's. His treatment was zith and omnicef. Took zith in the AM and omnicef before bed. Took probiotics in-between.
Though he was only 6, he learned to swallow pills within a few days. That was a relief as liquids would have been more difficult.
Thrived under Dr. J's care and became symptom free within 6 months. (He was under his care for 1 yr). He's now 7.5 yrs old & currently off all meds and doing wonderfully.
He does have some learning difficulties (reading/math/focusing issues)that is most likely caused by his lyme, but we are getting help from the school and making progress.
My lil' one is a success story, prayers that your daughter is on the road to recovery soon too.
I wish you guys the best, I also just started my 10yr old son on treatment and he is doing orals. Ceftin then moving to Zithro.
His symptoms are similar to your daughters I only hope that we are early with it and they can get better quickly. Our LLMD did say that children respond much quicker than adults and I am very hopefull that is the case for both of us.
Send me a pm, if you want someone to talk with offline as you go thru this. My wife was diagnosed in Nov 09, 10yr old Son in May 10 and we are going to get our 5yr old daughter tested in a month or so. We have an LLMD in MO.
t9im
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posted
Tom & everyone thanks.
I'm glad we went to Dr. J as we had a follow up visit with the Family Dr. who indicated TB symptoms. While he is not in the anti cronic lyme camp he would not have been the one to treat our daughter.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Tim, I used a compounding pharmacy for my son's azith (couldn't afford zith) and it was affordable. We put it in yogurt.
We used Tiffany's Natural Pharmacy in New Jersey. Good people. They do mail order. We have used them for a human prescription for our dog's addison's disease for years.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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IckyTicky
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My 9 and 7 yr olds were put on Zith (they just got dx with congenital Lyme.. no tick bite history ever) and my 7 yr old had fibromyalgia, ADHD, muscle twitching, stomach aches and foot pain.
My 9 yr old presented with muscle twitching, involuntary limb movement, stomach aches, chronic fatigue, nystagmus, foot pain and anxiety.
My 9 yr old herxed a little, but NOTHING like my 7 yr old did on Zith. His ADHD got a lot worse at first but the main thing is that he would wake up every night and be racing around the house acting out his dreams. That lasted for three nights..I halved his dose and brought him slowly back up.
It can be different for different kids. Depending on how long they have had it etc.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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t9im
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posted
I did read on Dr. B's Advanced Topic's indicted being off antibiotics for 6 weeks before being tested so we didn't do this one.
We are on day 9 of the treatment, no real herxing, just the normal fevers, weakness, foot pain and numness.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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posted
Well we are now 10 months into treatment and Grace has shown some improvement from Babesia but the Lyme progress is not great.
Our bigest issue the past 5 weeks is trying to determine what she is having an alergic reaction or die off from. We stopped Tindamax for the pastd two weeks but started again yesterday (I'm afraid the brain fog comes back without this).
We keep cutting and adding back to try and see what is causing the severe itching (back chest, legs, sholders).
Will try to write up the complete 10 months soon.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
My son got Lyme, Babesia and Bart from a bite when he was three, almost three years ago. He had symptoms similar to your daughters, and was treated with a large variety of meds over the course of two years. We also saw about 8 doctors before we got into the right hands of an experienced LLMD.
We staggered our meds, and did high doses of probiotics in between. Before I knew about the probiotics, we ended up with two gastrointestinal bacterial infections which made for an awful few months.
We also did volcanic clay/epson salts/baking soda detox bathes, along with Juice Plus whole food supplements (we all still take these), and Vitamin D.
Prayers for your daughter full recovery, stick with it...my son's doing well now, although his little brother had a concerning bite/symptoms recently and we're awaiting lab results on him now.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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posted
Dr. J will never "retire" from what I've seen.
He could have easily retired 20 years ago knowing even then that he did everything he could to help sick children.
But still he keeps on going, day after day, willing to help the sickest of the sick, despite the persecution and financial penalties he has endured for doing so.
His legal bills continue to rise. But his compassion for and dedication to his young patients remains unchanged.
I'd be hard-pressed to identify someone else like him. He is truly one in a million.
He won't live forever unfortunately and so we parents at some point will find ourselves in a position where we are looking to another LLMD for help.
The problem is that we will likely never have another Dr. J. any time soon. People like him are a rarity.
We can only hope that his life's work, dedication and legacy will live on decades from now. It will be up to parents like me to make sure that happens.
And I would hope that someone who shares his vision and dedication and knowledge will be able to step into his shoes and pick up where he leaves off. That will not be an easy task.
I do understand and appreciate all your concerns. I am a mom who has "walked through fire" with these dds. I send my hopes and prayers to you all that your children get well soon.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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bcb1200
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Thanks Tim. Keep us posted. As a father of 2 young daughters, I can't imagine what you are going through. They are my girls and my world.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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t9im
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posted
As parents we all know how difficult it is to juggle work and taking care of the family.
We are fortunate as my wife was able to quit working to take care of our daughter when this started. Many are less fortunate than us from this perspective.
I've slowly tried to take on an advocate role in all of this. With a new administration in Hartford hopefully they will be more receptive to our side of the Lyme controversy.
How successful I am is anyones guess at the least I'm pointing out the injustice being done to the children.
I've met and talked with Dr. J a couple of times besides when my daughter has had appointments. My impression is this is his life and he will go on fighting and treating our children. I try to help him as best I can.
While I know our daughter will become well again its more of a battle than I originally imagined. We've adapted.
Dr. J is a saint. Just remember it takes a long time to erridacate these bugs and even with all his experience it can be trial and error depending on the patients make up and complexity of the diseases.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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posted
Hi Everyone:
It is time for an update on our daughter's condition. She is now into month 13 of drug therapy for treatment of Lyme and Babesia.
Of course like many here we went through the process of 8 months, 8 MD's, 2 Children's Hospitals, numerous tests, the Pediatric Infectious Disease specialist stating ``I know Lyme and your daughter doesn't have Lyme Disease, etc. before we started to realize about the controversy.
Fortunately she started seeing Dr. J in May of 2010 (have now had 5 visits, had to have an extra one, see below).
First 4 months were Zith and Mepron then added Tindamax in September, upped Tindamax in January but had to back off and then stop it completely at the beginning of April 2011.
Of course like many she continued to become worse last summer but the constant day fevers broke in late July (so 2 months b/4 seeing results against the babesia). As parents we did not know if we were going along with the correct course until we started to see results (she had been negative for both Lyme and Babs by the serological tests, with 2 positives and 2 IND on the WB IgG).
By February time frame the night sweats alleviated and the vertigo seemed to disappear.
By April the air hunger seems to be gone. So we think we are almost through the babesia.
Now unfortunately the neuro symptoms continued to deteriorate last year and it took over 2 months of tindamax b/4 we started to see some improvement (with the improvement in December, 2010). We were happy when Dr. J increased the tindamax dose but she couldn't tolerate the higher does.
We continued on the zith, mepron, tindamax (at the original does, 1 x day. 2 consecutive days)but stopped the tindamax due to two side effects.
An itching issue which became severe (we were offsetting the allergic reaction via another drug). We would have continued anyway (as a parent it is hard to harm your child but you would have to understand the neuro issues which this drug helped alleviate) but besides the allergic reaction the side effect of anorexia was taking hold (so watch for this if any of your children are on the medication).
Now she is just on the Zithromax and Mepron. I think we wait till our next appointment but are fearful the neuro symptoms start to return. Not sure if Dr. J is keeping her on the Mepron / Zith for babs or now just for Lyme.
She has improved a great deal over the last year and is back reading. Social issues with missing a complete year of school, with fatigue and bone / joint pain seeming to be the main remaining symptoms.
Itching now seems to be triggered by anxiety (versus the tindamax episodes).
Of course the school system is a separate discussion.
Now with this approaching 2 years we continue to wait for the next step back but hopefully she keeps progressing.
I continue to try and help Dr. J when I can as well as others with this disease.
Any other parent with stories, I would luv to hear them.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thank you, Tim, for the update. I was wondering recently how your daughter was doing.......
Sounds like she has made good progress in a relatively short time........
I didn't notice in your post your dd being on any Lyme-specific spirochete meds, such as mino/doxy or ceftin/omnicef, etc. Is she?
You did mention Tindamax, and that is very good for cyst busting of the Lyme, but what is she using to kill the "released" ketes? Just Zith?
I hope your dd continues to make great strides in her recovery. Feel free to pm if you'd like to "talk" offboard.
Posts: 648 | From northeast | Registered: Feb 2009
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bcb1200
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Tim...thanks for the update. I think of you guys often and wonder how you are doing.
Glad to hear you are seeing progress. Kids are pretty resilient and have an amazing ability to heal. I'm sure you'll continue to see results with Dr. J's treatment.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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t9im
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Hi aMmWithHope:
We'll the only lyme specific drug has been tindamax and we had to take her off of this after 7 months.
We saw great neuro improvement while on this so are now fearful the neuro symptoms come back but she needed a break from some of the effects.
I have to recheck my notes but I thought Dr. S's work indicates the Tindamax also goes after the spirochets.
So yes now only the mepron / zith which is for the babesia.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Can you expand on the school system if you feel comfortable? We have put our daughter in home school, but there are totally different challenges. Thanks for sharing.
-------------------- Dina Herrington-Chant 215 559-9220 Posts: 2 | From Philadelphia, PA | Registered: Jun 2011
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t9im
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Hi everyone:
Well it has now been just over 2 full years. I can say it has been a long and hard road, but much harderfor our daugher.
She is now 12 and while there are some immune system issues we believe the lyme and babesia is over.
Of course we will fear a relapse but she will come off the Mepron and Zithromax this coming Monday. This corresponds with the last day of school and her LLMD did not want to disrupt the schedule.
I'm hoping stopping Mepron is a good thing but I've read stories of people (adults and children) having issues in the first month after coming off long term meds.
I hope to write this up completely (my wife stopped the detail diary last summer when the cognizant neuro symptoms disappeared) but it may take a while.
We will fear a relapse and there are some immune system issues to address once the meds stop.
dherrington, I apolgize but I never saw your post till today. I will PM you or call.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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If you get hold of dherrington, you might want to suggest he/she remove their ph# from this VERY public board.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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t9im
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posted
On the local school system.
We did have to pull her from the local school system.
In the first year of illness (grade 4), when the IDSA had us believing it was chronic fatigue brought on by a strep infection she missed or only attended part time 162 days.
In the second year of illness (starting after 3+ months of mepron / zith) we set up a tutoring system with the school but canceled on the first day.
Anyone that has experienced the brain fog, short term memory loss, lack of focus, headaches, can understand why we had stopped the school tutor. The medical director was not in agreement.
We had a letter and form filled out by our LLMD but the medical director did not agree and without our permission brought in an outside MD consultant and then reported us to the State Board for not educating our daugher.
What fun that was.
We did start the tutor in mid December but mentally this was a waste. I remember one time my daugher being required to take exams with a 102 fever. What a joke.
For the 6th grade we were fortunate to be able to send her to a private school. I'm not sure if she is fully back up to speed education wise but she would have been lost this year in the public school.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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Hi Lymetoo:
It was help from you and many others here that I was able to learn so much about the controversy.
Of course the LLMD list and seeing Dr. J was great.
posted
We're always glad to help!! That is what Lymenet is for!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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t9im
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posted
Well two months off meds but we realize lyme is rearing its ugly head. Sligh fever and malise 1 month off meds the fatigue has been getting worse. Like clockwork the fever (higher this time) and malise with fatigue increasing.
Trying to see Dr. J this week.
So she is not past this yet.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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bcb1200
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Sorry to hear that Tim. Do you think it is lyme or Babs coming back? Sounds like lyme if its been 2 months.
Keep us posted. I hope she bounces back soon.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Tim, I just caught up on your story. I have two with Lyme, Babesia, RMSF, Mycoplasma (ages 6 + 3). It's been a challenge getting them to well, working with their traditional pedi, being aware of what is said or not said to school.
You sound like a very proactive and vigilant parent. Your daughter is lucky to have such a strong advocate.
Hoping you/she can fight this relapse quickly. Going off meds is a tough decision. My two keep asking me when their medicine will be done, I tell them I'm leaving it up to the doctor.
Did you also have Lyme? I'm curious because you spoke as if you've experienced it firsthand.
Posts: 274 | From United States | Registered: Feb 2012
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t9im
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Hi bcb:
No not the babs we think we got that one. Hope you are doing better. I see you are now seeing Dr. H. He is one of the best so you are in good hands.
Hi YinYang
No fortunately I have not had lyme. Only my daughter. She had Lyme and Babesia. On meds for just over 2 years, symptoms had been gone for over 4+ months but a few came back after 4 weeks, then disappeared for a couple of weeks and are back.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Jane2904
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Sorry to read your daughter is not doing well.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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jackie51
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I'm sorry to hear she's not well. I'm sure she is devastated.
Keep us posted.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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