What a night!

[philamom]

Ok, I'm shaking a little this evening.

Last two weeks my daughter's been nonchalantly asking when her next infusion would be. Since she's always been scared of them (though much better) I thought she was just trying to see if one was scheduled. Her last IVIG was Nov 1st/2nd. At the end of Oct, she was doing so well on the lyme protocol, that I wasn't certain I wanted to do anymore IVIG. Well, I proceeded and the infusion just stirred everything up for 6-7 weeks. We had a nice X-mas and was again seeing great improvement in January. Then days after our follow-up with her llmd (Jan 17th) she began displaying some symptoms. A couple of days later she told me she didn't feel right--she felt different again (a sign of strep). I went to the school nurse to request another letter go out to inform her of any cases of strep in my daughter's grade level (a letter went out in the fall). The next couple of days I received news of 8 cases of strep. I had my dd checked with a throat culture--negative. Since then, I've been slowly seeing more signs of symptoms coming back...including a slight fear of choking/vomiting returning, excessive potty talk, fixations, and placing extreme feelings to toys/stuffies, and noise sensitivity. I went back and forth on whether I should request an antibiotic change, but because of my daughter's GI history, I'm very hesitant to rock the boat. This week, I received her labs that were done on Jan 17th, and she had a positive Streptozyne Screen. One thing that is going well though, is school (but, she does have an awsome, awsome teacher who inspires the best in every child. I think he has mild adhd and encourages the children to move while learning and be creative. My daughter is excel-ing and getting wonderful grades while having fun. ) Now, in the last two weeks, I had to bring her in late 3 days because of some anxiety. So back to the point--things have been slowly regressing since the middle of January. Oh, and she also had a round circular rash appear under her armpit recently too.

Well tonight she comes home crying, asking to please have another ivig, how it takes the feelings she's experiencing now...away. She said ever since around the time of the follow-up appt, she's became weird again. She also told me she's experiencing tingling pains up and down her arms. After I calmed her down, we talked for a good half-hour. She was afraid to tell me that she was feeling symptoms again, because she didn't want to see a psychologist again. She's also afraid I will talk to her friends parents, and her friends will no longer want to play with her. That they wil catch her disease. At the end of the night, she was begging me to call and schedule the ivig...this was the girl who was so scared of needles, that we couldn't even mention the infusion until the day of.

 

I'm so tired and confused on what to do.

Edited February 26, 2011 by philamom

[momofgirls]

Oh gosh Melinda I am sorry. So are you saying she recently developed a bullseye rash? Maybe this is a good strong herx. I don't know. I know you have been worried about strep lately but she is on a lot of abx. I remember you posting about a rise in titers recently. I am hoping that she is well covered and wouldn't deveop an infection and that maybe this is a herx. Don't have a lot of advice except maybe call Dr Jone's office in the morning. The herxes can be very rough sometimes. I am hoping this is what you are seeing.

Kim

Ok, I'm shaking a little this evening.

Last two weeks my daughter's been nonchalantly asking when her next infusion would be. Since she's always been scared of them (though much better) I thought she was just trying to see if one was scheduled. Her last IVIG was Nov 1st/2nd. At the end of Oct, she was doing so well on the lyme protocol, that I wasn't certain I wanted to do anymore IVIG. Well, I proceeded and the infusion just stirred everything up for 6-7 weeks. We had a nice X-mas and was again seeing great improvement in January. Then days after our follow-up with her llmd (Jan 17th) she began displaying some symptoms. A couple of days later she told me she didn't feel right--she felt different again (a sign of strep). I went to the school nurse to request another letter go out to inform her of any cases of strep in my daughter's grade level (a letter went out in the fall). The next couple of days I received news of 8 cases of strep. I had my dd checked with a throat culture--negative. Since then, I've been slowly seeing more signs of symptoms coming back...including a slight fear of choking/vomiting returning, excessive potty talk, fixations, and placing extreme feelings to toys/stuffies, and noise sensitivity. I went back and forth on whether I should request an antibiotic change, but because of my daughter's GI history, I'm very hesitant to rock the boat. This week, I received her labs that were done on Jan 17th, and she had a positive Streptozyne Screen. One thing that is going well though, is school (but, she does have an awsome, awsome teacher who inspires the best in every child. I think he has mild adhd and encourages the children to move while learning and be creative. My daughter is excel-ing and getting wonderful grades while having fun. ) Now, in the last two weeks, I had to bring her in late 3 days because of some anxiety. So back to the point--things have been slowly regressing since the middle of January. Oh, and she also had a round circular rash appear under her armpit recently too.

Well tonight she comes home crying, asking to please have another ivig, how it takes the feelings she's experiencing now...away. She said ever since around the time of the follow-up appt, she's became weird again. She also told me she's experiencing tingling pains up and down her arms. After I calmed her down, we talked for a good half-hour. She was afraid to tell me that she was feeling symptoms again, because she didn't want to see a psychologist again. She's also afraid I will talk to her friends parents, and her friends will no longer want to play with her. That they wil catch her disease. At the end of the night, she was begging me to call and schedule the ivig...this was the girl who was so scared of needles, that we couldn't even mention the infusion until the day of.

 

I'm so tired and confused on what to do.

[KeithandElizabeth]

Melinda:

 

I am just thinking aloud right now....

 

So, I guess I am perplexed about the positive streptozyme levels when your daughter is on so many antibiotics. I am wondering what Dr. Jones says about this? My son was backsliding last winter amidst monthly IVIG's and Augmentin and this is when I knew something was amiss. At this time, his streptozyme level was also positive and this is when I realized that there were more infections at play to allow strep to invade while on antibiotics and IVIG.

 

So, I am wondering if the current antibiotics she is on are not as effective anymore? Have you looked into viruses yet? Viruses set us back many times and we now using an over the counter anti-viral as a preventative measure.

 

We have had regressions with new mycoplasma infections, staph infections and viruses. I cannot remember what antibiotics your daughter is on right now, but do they cover staph?

 

I know these regressions are so hard and trying to figure out if there is a new infection at play versus a herx is so mind boggling.

 

Elizabeth

[philamom]

Elizabeth,

She is on daily Amoxicillin 1000mg daily (since Sept), daily Zith 250mg (since July), daily Minocin (since Dec), and Tindamax 250mg on weekends (since end of Sept).

I called his office when my daughter first spoke of feeling different and I had knowlege of the strep cases going thru the class. This was before we had the streptozyme result. They said to have her cultured, but if in a week there is still symptoms they could treat for strep. But I couldn't tell if the symptoms were a herx, or from mere exposure, or infection. And then I worry about c-diff with a change of abx...especially if it's just from exposure. Then when I called after receiving the positive Streptozyme result, they said to stick with the same abxs...that a lot of lyme patients often get strep. I will call again tomorrow.

 

My daughter is not taking anything for virusus. Can you pm me the anti-viral product you are using? Thnak you!

Melinda

[sf_mom]

I would rotate to something to cover strep better like rifampin for at least 8 weeks prior to jumping into another hdIVIG. Focus on detox and start anti-viral protocol once things settle from rotation. You really want her body to do the work of recovery. I know, I know.... and ultimately if you need to do the hdIVIG I understand but please exhaust other options first.

 

We are using 1800 m.g. so 2 pills in a.m. and 2 pills in p.m. of Olive Leaf Extract. http://www.seagateproducts.com/olive-leaf-extract.html We had a 10 day herx from it.

 

Many of us have experienced these set backs and YES they are harder especially when they were doing so well with progress. Also might want to ask for bactroban nasal prescription... layer of protection in nose from future exposures. Every other day use or when heading out into social settings.

 

-Wendy

Edited February 26, 2011 by SF Mom

[philamom]

I would rotate to something to cover strep better like rifampin for at least 8 weeks prior to jumping into another hdIVIG. Focus on detox and start anti-viral protocol once things settle from rotation. You really want her body to do the work of recovery. I know, I know.... and ultimately if you need to do the hdIVIG I understand but please exhaust other options first.

 

We are using 1800 m.g. so 2 pills in a.m. and 2 pills in p.m. of Olive Leaf Extract. http://www.seagateproducts.com/olive-leaf-extract.html We had a 10 day herx from it.

 

Many of us have experienced these set backs and YES they are harder especially when they were doing so well with progress. Also might want to ask for bactroban nasal prescription... layer of protection in nose from future exposures. Every other day use or when heading out into social settings.

 

-Wendy

Can rifampin be used if you have elevated LF's? I was thinking maybe a change to Omnicef?

 

I've had no luck with any doctor prescribing the bactroban nasal ointment.

 

Thanks Wendy!

[sptcmom]

Melinda- I am so sorry to hear this. DS's LLMD had a definitive answer for herxing- its a slow rise in symptoms, symptoms peak and then fall again- so like a Bell curve. if its reexposure/ new infection you'll see symptoms add on. I agree with Wendy and Elizabeth and would think along the lines of viruses, yeast,strep, mycoplasma. we have a very specific protocol (herbal/homeopathic) to pull out of any new exposure. I can PM you that. Works every time so far.

Rifampin is contraindicated/ high caution if LFTs are off. It blocks liver detox pathway phase 2 as well if children have genetic polymorphisms in that area.

Rotating abx is always a good idea if you're not using any holistic antimicrobials and biofilm strippers. Adequate probiotics should take away your C-diff worries.If you're worried about c-diff your probiotics may not be high enough.

Drinking Fountain water in school can introduce viruses as well as intestinal parasites, as can eating out food with raw ingredients like salads; eating out hot cooked food is a better option.

Detox plus drainage plus liver support. Decrease physical and mental stress, increase sleep- usual extra precautions.

If biofilms are a concern- as they usually are in our kids, the amount may have increased and the abx is not getting thru could be a problem.

or usually phospholipids are needed for good intracellular absorption/penetration of meds and supplements. I use organic Ghee for this purpose and also organic coconut oil- eat and rub on skin.

The EMF scenario needs to be tackled.

I believe all angles need to addressed at the same time as much as possible as long as possible.I was seeing a lot of horrible ups and downs until I realized this.

 

Bactroban ointment- I can get my primary care guy to prescribe this one (mupirocin- generic) for cuts and scrapes I keep getting at work and then use it for DS.

Or

regular plain old Neosporin is fine too.

Edited February 26, 2011 by sptcmom

[philamom]

sptcmom-

Thank you for sharing! I would really love to hear your protocol...again thank you!

Regarding the probiotics...I give around 275 billion cfu daily. My daughter has had past infections of c-diff and giardia. So yes, it's always a concern.

[pixiesmommy]

Just wanted to mention that I am not an expert, but I see OLE mentioned, and I was under the impression that could not be taken in conjunction with rx abx?

[momaine]

The rash and the tingling sound like they could be herx reactions, so maybe the worsening ocd is too. My dd has developed a lyme rash twice now since starting treatment a month ago. Overall she is much better than she was, but she has a cold and the last few days things have been a little worse again. Not sure if it is from the cold (dd thinks its the cold) or if its from a herx reaction. I know its controversial, but we are still planning on and IVIG in about two weeks. I'll let you know how it goes.

[philamom]

The rash and the tingling sound like they could be herx reactions, so maybe the worsening ocd is too. My dd has developed a lyme rash twice now since starting treatment a month ago. Overall she is much better than she was, but she has a cold and the last few days things have been a little worse again. Not sure if it is from the cold (dd thinks its the cold) or if its from a herx reaction. I know its controversial, but we are still planning on and IVIG in about two weeks. I'll let you know how it goes.

Momaine-

It's so hard to distinguish between a herx and a new infection. This is not a worsening of symptoms, but some symptoms that have been gone for quite some time, that are slowly creeping back. We've had days and hours of herxing in the past, but this is different. She even mentioned when this started 6 weeks ago that she felt different again. And, It coincided with strep going through the class, and a very minor sore throat. It's tough...because you would think she would be covered with all the antibiotics she's on. She also then had a sinus cold, and then the rash...so who knows.

 

Yes, please let me know how you make out with the infusion. Hopefully, this is just a temporary increase for your dd from the cold.

[JAG10]

Hey Melinda,

 

Just wanted to send out a cyber-hug. You are a fabulous mother and your daughter is so fortunate to have you fighting for her at every turn! You will get her back on track again by whatever means effective. Take care & we've gotta get that coffee soon!

 

Jill

[cobbiemommy]

What about a monthly Bicillin shot as a strep preventative? My son is taking them weekly to help bring down his Lyme load and to ward off strep, but I know another young girl who had a rheumatic reaction to strep and takes them once a month to prevent reinfection. Just a thought....

 

Cobbie