t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
HI Everyone:
Our daughter had her 2nd visit with Dr. J yesterday and we will now start adding Tindamax to the treatment protocol (Mepron & Zithromax).
I'd luv to hear any quick stories of what we might expect.
We believe our 9 yr. old was infected in September 2009 (no em rash, negative elisa) with 8 MD's, 3 childrens hosipitals, etc. b/4 we went to Dr. J. last May.
Now while Dr. J indicates exposure to Lyme (her IGeneX, IgM 30+, 34 IND, 39 IND, 41++) and our treatment is for BABS and Lyme (Mepron and Zithromax) he would not committ to Lyme or Babesia, keeping an open mind to symptoms.
Just to provide an update:
Treatment started Mid May - Mepron & Zithromax.
Mid July - day fevers seemed to break and sleep agitation started to decrease.
Fatigue also seemed to be better.
Last week of August to mid September - seemed to relapse with day fever coming back, joint swelling, general not feeling well.
Also noticed herx symptoms starting around 20th of month during treatment.
Dr. J indicated bone & muscle pain are not there compared to May and breathing is better, positives we did not notice.
So we continue treating BABS for at least 4 more months (mepron is also good for cyst lyme) and now add tindamax for Lyme.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Sorry your daughter is sick. My 9 y/o daughter just started seeing Dr J too. We are waiting on her igenex results; but treating lyme now. She is on daily omnicef, and zith and pulses tindamax every weekend. She is doing well. If she takes the tindamax on Sat, usually by SUnday she will complain of a headache and maybe more fatigue.
I just tell her that is good because the bugs are dying. SHe has handled it well so far. I think tindamax is a great drug. I am on it too for Bb. Some feel it has effects not only on cystic lyme, but also on babesia because it is an "antiprotozoal". Dr J is the best!
Posts: 747 | From Utah | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi kimmie:
I hope you and your daughter are well soon.
Thanks, I'll keep updating the status. We are sort of in a set back mode but are thankful we have Dr. J and know it can be worse.
I'm guessing he sees over 1,500 patients a year. All these children falling throught he cracks.
He did rerun the IGeneX for Lyme plus other stuff but I won't know what till the results come back.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Child update:
Our daughter has now completed her 6th month on drugs after being diagnosed with Lyme and Babesia.
As earlier posted she became worse in late August and she started Tindamax in mid September.
The mental fog is probably what has been the worst over the last 10 or so weeks. She seemed to come out of it for the 1st time on Saturday and we actually were able to go for a walk and had lunch outside.
Sunday was also a decent day (not as good as Saturday) but a slight fever has come back on Monday and Tuesday (these are the Tindamax days).
Hopefully we will have more good days showing up but the previous 10 weeks were difficult after seeing some improvement during the summer.
We also started to see Dr. M in October as we felt Dr. J's office on communication was just not keeping up. We understand the monitor and state board pressure as well as his compassion to not say no to the children so while trying to help felt a 2nd MD could only help.
Our daugher was having a yeast issue which Dr. M has been able to help with.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Tim
Thanks for the update. I hope she continues to improve.
I'm still watching my 2 1/2 year old daughter like a hawk after she was bitten in the ear in April. Took her to see Dr. M in CT 10 weeks later. He did a phone consult with Dr J and both said she was fine as some symptoms should have shown by now.
Makes me feel mostly confident she is fine, but I do worry from time to time. Ie "is this tantrum "nomal?"
Or, is it lyme in the brain, etc. (She rarely has tantrums btw...but has been pushing the envelope as any 2 year old does.
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
HI B:
Thanks for the post. I still remember our discussion around 6 months ago (I was in a super market at the time). I'm glad your daughter is fine, I'm sure its just a fathers protection mode.
I hope your well on the way to recovery.
Best wishes,
Tim
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My youngest and I both have been taking tindamax for 2 months. He takes it over the weekends and it seems to stir things up with more symptoms. I am working full time and moved my tindamax to Thursday and Friday because I feel like I have delayed symptoms 2 days after I stop. Now I can herx on the weekends and not during the work week fun! I feel like tindamax slows me way way down for about 24 hours. I am more achey. I'm glad to have symptoms in that weird kind of way because I know it is working. We both are set to do artemesia next week and dread the way we feel on it. Thankfully, my husband is the feast provider. Having a sick child is not an easy thing. It is nice to hear from an involved father.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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