Visit with Dr.Jones

[bubblegum]

We saw Dr.Jones yesterday and he is Wonderful!DD7 had a small mass removed from her chest in 2008.Dr.Jones asked for the slides from the procedure be sent to him so it can be examined for lyme.Pathology will send it to him tomorrow.(I didn't know that they keep the slides or paraffin block for years!)It will be interesting to see what comes back.I also asked about cogenital lyme(Even though my husband and my Western Blot are negative.)Dr.Jones didn't think so,you would see hypotonia at birth,irritability,and trouble eating,swallowing.(Which dd7 did not have)He was not concerned about EBV,CMV or Mycoplasma Pneumonia because they were in the past.Also DD7 is scheduled for IVIG next week with Dr.B and he said to go ahead with the treatment,that we want to treat both issues at the same time.DD7 does have Babesia(IGX test fish came back +)He did repeat labs and is checking Bartonella and BB again.He thinks they are there but didn't find them on labs yet.Also I asked him about Toxoplasmosis Gondii(Not sure if I spelled it right)and he did order it.DD7 is 73 pounds.She will start on Mepron 375 mg 2 x day.(To treat the Babesia)Also Enula liquid 1-5 drops 2 x day.You start with 1 drop for a few days and then increase it,to see how it does.You can order it from Nutra Medix.It sounds like they stay on the Mepron for at least 3 months and longer.We will get a typed report and labs sent to us,so we will have to see what else we might have to treat.I hope that this info might help someone else!Steph(Just my opinion even if you don't suspect lyme or co-infections I would send blood to IGX to rule it out,I wish we had done it sooner!)

[philamom]

Sounds like a GREAT visit Steph...I'm so happy for you! Here's to the beginning of recovery!!! We have an appt. scheduled in November. Please keep us posted on her progress (good and bad).

Melinda

[philamom]

Gatito-

We are also scheduled for IVIG with Dr. B in a few weeks. During our last infusion we gave our daughter steroids on the two days of the procedure to help with headaches/nausea. It worked. Now I'm hesitating using it again because of the Lyme diagnosis. Do you have an opinion on this? Wendy-- how about you?

Thanks so much-

Melinda

[rockytop]

my daughter also took Mepron for many months for babesia (WA-1) and had lyme.We do not go to dr jones- but see a WONDERFUL LLMD here in northern VA. If you ever want to chat- PM me. My daughter is now 12. No IVIG yet, but i am hoping soon- I think the LLMD told me that timing of antibiotics and IVIG was important, but since my daughter refuses all medicines ( and I mean REFUSES!!) neither is an issue right now. what is Enula or nutramedix?

[bubblegum]

I don't think a few days of Prednisone is harmful in regards to lyme,I did mention it while we saw Dr.J (our daughter was on Orapred every day for about 3 months and she is no longer taking it)I know that they shouldn't be on it long term due to the lyme.I hope that we can get our dd to take the Mepron,she wouldn't finish Augmentin ES this am and we are going to try to switch to tabs and crush it(You can't crush XR but regular Augmentin 875 you can)and then put it in something.DD vomited in car on way to Dr.J and now afraid she is going to vomit.The Augmentin changed from brand to generic and she knows that it taste different even though we put it in choc pudding.Also temp 99.2 while at appointment.Did Mepron help your daughter?Philamom,I tried to send you a message,if you did not get it I will try again!

[bubblegum]

Oh I just wanted to mention that when we tried Zithromax in past dd could not sleep and s/s ocd were worse.Dr.J did not feel herx reaction but adverse effect.(So she should not take it)We picked up a paper from him regarding herx reactions and I will type the info when I have time tonight.

[philamom]

I don't think a few days of Prednisone is harmful in regards to lyme,I did mention it while we saw Dr.J (our daughter was on Orapred every day for about 3 months and she is no longer taking it)I know that they shouldn't be on it long term due to the lyme.I hope that we can get our dd to take the Mepron,she wouldn't finish Augmentin ES this am and we are going to try to switch to tabs and crush it(You can't crush XR but regular Augmentin 875 you can)and then put it in something.DD vomited in car on way to Dr.J and now afraid she is going to vomit.The Augmentin changed from brand to generic and she knows that it taste different even though we put it in choc pudding.Also temp 99.2 while at appointment.Did Mepron help your daughter?Philamom,I tried to send you a message,if you did not get it I will try again!

 

gatito-

Did not receive it. I think your user is blocked (turned off). Of course, I'm still trying to navigate the site myself.

[sf_mom]

The month long steroid tapers is where I have heard there was an extreme negative response for a child with Lyme originally thought PANDAS.

 

Gatito: So glad you saw Dr. Jones!!! Keep us updated on your daughters progress. My girlfriend's son had a herx response 'right on que' at the beginning of the 4th week and took about 5 days to resolve (be prepared).

 

-Wendy

 

 

 

 

Gatito-

We are also scheduled for IVIG with Dr. B in a few weeks. During our last infusion we gave our daughter steroids on the two days of the procedure to help with headaches/nausea. It worked. Now I'm hesitating using it again because of the Lyme diagnosis. Do you have an opinion on this? Wendy-- how about you?

Thanks so much-

Melinda

Edited August 3, 2010 by SF Mom

[philamom]

Thanks Wendy

[philamom]

I don't think a few days of Prednisone is harmful in regards to lyme,I did mention it while we saw Dr.J (our daughter was on Orapred every day for about 3 months and she is no longer taking it)I know that they shouldn't be on it long term due to the lyme.I hope that we can get our dd to take the Mepron,she wouldn't finish Augmentin ES this am and we are going to try to switch to tabs and crush it(You can't crush XR but regular Augmentin 875 you can)and then put it in something.DD vomited in car on way to Dr.J and now afraid she is going to vomit.The Augmentin changed from brand to generic and she knows that it taste different even though we put it in choc pudding.Also temp 99.2 while at appointment.Did Mepron help your daughter?Philamom,I tried to send you a message,if you did not get it I will try again!

Gatito-

Thanks! Is Mepron an antibiotic? Will she be on it together with the Augmentin? My daugter also vomited on the way to a doctors apptointment in December and we are still dealing with the phobia. You might be able to take the pills to a compounding pharmacy and have them crushed into a capsule or mixed with a flavoring.

[bubblegum]

Hi,How did you get your daughter to take the Mepron?Our daughter is tired of taking stuff even though we mix it in whatever will work at the time like pudding.It is only 1/2 tsp so my husband tried in syringe but she spit it out on the floor.She says it burns her tongue/throat and she also complained of the same thing when we tried Advil(liquid)and Motrin meltaways.They use Mepron to treat Malaria but also use it for Babesia.We are going to try again tomorrow.The Enula liquid is used to treat lyme/babesia.It is made by NutraMedix,they are in Jupiter Fla.So we are going to call and order it tomorrow.The enula is made from 3 different roots.Steph

[matis_mom]

Hi,How did you get your daughter to take the Mepron?Our daughter is tired of taking stuff even though we mix it in whatever will work at the time like pudding.It is only 1/2 tsp so my husband tried in syringe but she spit it out on the floor.She says it burns her tongue/throat and she also complained of the same thing when we tried Advil(liquid)and Motrin meltaways.They use Mepron to treat Malaria but also use it for Babesia.We are going to try again tomorrow.The Enula liquid is used to treat lyme/babesia.It is made by NutraMedix,they are in Jupiter Fla.So we are going to call and order it tomorrow.The enula is made from 3 different roots.Steph

Will she swallow capsules? I find with my kids they would much rather swallow a capsule than taste this stuff. I got some empty veggie caps and I use them for oil of oregano or other natural remedies that come just in the liquid or powder form and taste disgusting.

[smartyjones]

Oh I just wanted to mention that when we tried Zithromax in past dd could not sleep and s/s ocd were worse.Dr.J did not feel herx reaction but adverse effect.(So she should not take it)We picked up a paper from him regarding herx reactions and I will type the info when I have time tonight.

 

 

gatito - do you have more info on why dr. J thought it was adverse instead of herx? my ds was initially put on azith 5 days and it was horrible. he had 100% remission on keflex. now, i'm not sure what it was about. was it herx to lyme? so, i'd be very interested to hear why he thought that of your child.

 

i know you're very busy -- would love to hear that info on herx or if you could direct me to what the paper is.

 

thanks!

[smartyjones]

He was not concerned about EBV,CMV or Mycoplasma Pneumonia because they were in the past.Also DD7 is scheduled for IVIG next week with Dr.B and he said to go ahead with the treatment,that we want to treat both issues at the same time.

Also I asked him about Toxoplasmosis Gondii(Not sure if I spelled it right)and he did order it.DD7 is 73 pounds.

 

 

sounds like you are on a good path!! how does he know the other infections are in the past?

 

"treat both issues" -- what do you mean? pandas and lyme? or have you uncovered immune deficiencies?

 

please, keep me posted on the toxoplasma results. and any other infections you uncover, i'd be very interested.

 

thanks!

[bubblegum]

Hi Smartyjones,The Herxheimer reaction is a phenomena that occurs during the treatment of lyme disease.It is thought that the cause of Herx reactions are a result of the endotoxins releasing with the introduction of antibiotics.The body's immune system then responds to the endotoxins by producing symptoms.SYMPTOMS-Temporary increase in symptoms but may also have new ones-Most common-increased joint or muscle pain,headaches,chills,fever(usually low grade),drop in blood pressure,hives and rash.A multitude of other symptoms have been described.Worth noting is that hives and rash are sometimes mistaken for an allergic reaction.It is up to physician to determine this,but with close observation and the use of medications such as Benadryl stopping antibiotics prematurely may be prevented.In more severe cases of Herx a reduction or temporary cessation of the treatment is an alternative.TIMING-This is individualistic and Herx reaction can occur within days to weeks after the onset of antibiotic therapy.In some patients they occur only once or twice if at all and others continue throughout the course of treatment,usually lessening in severity.They can occur and are more often described in cycles(every 4 weeks)and have been reported to last from days to weeks.It is beneficial to document exacerbations.Some docs use this as a guideline for treatment.Further it may help differentiate Herx reaction from normal symptoms or progression of lyme diseae.Treatment-The use of NSAIDS(Non steroidal anti inflammatory drugs),hot baths(to relieve joint and muscle pain).Of note some have found Benadryl helpful even in the absence of rash or hives.The Herx reaction is thought to indicate that the antibiotic is working.Following each worsening there may be more improvement.However,the lack of Herx reaction should not cause anxiety if symptoms are improving.Something often overlooked but can be present with similar symptoms as a herx reaction is Candida(yeast infection)Then he suggests Theralac-Probiotic.1-800-926-2961.When we asked Dr.J about Herx he stated that if you stop the med for a day then this helps.When our dd took Zithromax she couldn't sleep for a week until 8 in the morning and ocd was worse.We tried Benadryl and then Melatonin but then she got a rash and they didn't help anyway.So we took her off the Zithromax and put her back on Augmentin ES.and then things settled back down.Dr.J did not think it was Herx.DD vomited on Monday and temp 99.2 Her ocd is worse.(We had to switch to generic Augmentin ES due to they are not making the brand anymore of 600 mg)last week and we are wondering if this is causing the changes.She also just had diarrhea(We give her Floragen 3 probiotic )So it is hard to tell if she is sick and that is why she is worse.Also hard to get her to take meds.Hope the above is helpful from Dr.J,Steph