Pixie-Positive for Lyme and Addison's Disease

[MichaelTampa]

Regarding the costs for things, it is a much tougher world for the lyme docs than it is for the chiropractors in terms of guessing what the insurance companies are going to do. I was eventually denied IV abx after two months, and now we are on orals as they have always been covered for me. But, when he was thinking at my last visit, of adding another drug, he first asked me how things were going with insurance, wondering if it would be too much expense for me. I quickly told him, the orals have always been fine, and he was happy to hear it, but that was information from him. I really think every patient is going to be unique in terms of what their insurance companies decides to pay for, there are so many variables in that equation. You peek over at the lymenet board once or twice and you will find there are plenty of patients who can't get their oral abx paid for. It's just shocking in a way, but it is the reality. Of course, some of those orals are really just enormously expensive, and I'm sure that's part of how that happens.

 

Anyway, I hear ya, darn right, it is tough, sure would be great to know what the costs are going to be after insurance. That certainly does argue in favor of the oral treatments where it is submitted through insurance before you pay for it, so you know where you're at. The fact they require cash for the vitC IV, to me, is a red flag that insurance coverage is going to be touch-and-go, less favorable than other treatments. The only way you'll find out what it will be for your case is to actually do it, an unfortunate reality.

 

On the IV vitC being dangerous, vitC and salt is something that some have had good success with for parasites. I don't know how many have tried it. A few point out it can be very dangerous, but I think it is more the salt than the vitC, at least, that is all I've heard about. I remember hearing once on the Canadian version of lymenet, talk of salt/vitC regimen is actually prohibited for fear of liability from people being hurt. I found that shocking, but I guess there is that point of view.

 

Those reactions pixie is having really could be herxing/detox, I'm not going to promise you it's that, but it would not be at all unusual to have that sort of reaction. I know someone who started taking one single herb for suspected lyme, within 1 week she had skin sores with puss, kind of like pimples and kind of like ant bites, all over her body. I think much more common are the headaches and fatigue and increase in some symptoms. This is the reality of treatment for many, unfortuante as it may be.

[sf_mom]

When I read your post this morning all I could think is "I KNOW"........

 

Last night I started an additional antibiotic, I'm not feeling well today, my mood is bad, I'm overly sensitive to noise, I got broken sleep due to the stabbing pain in my hands, its painfully slow watching my children heal without a clear end in sight, its not straight line of improvement and any little set back can feel like we are on the cusp of regression, its cold, its rainy, etc. Our younger son is doing a ton better emotionally but he picked up his first TIC of shoulder shrugging in the last week. Our older son's mood liability is essentially gone but he has started up with frequent urination again. So, we are trading some symptoms for another. My only hope is when I'm feeling 'like this' is to remind myself to manage symptoms (motrin, bentonite, and espom salt baths) and a better perspective will come and eventually it does.

 

I am sick and tired of being sick and tired... plus 3 today.

 

Sounds like its time to regroup a little with your Dr. and talk to him about expense and plan. How long has Pixie been treated for Lyme? I read in one of my Lyme Books that a Dr. typically only looks for two days of improvement in the first six weeks of treatment. Our kids have been very sick and somedays I can't even imagine they will ever be off antibiotics. BUT, it does happen and it will happen. Also seeing your Dr. and trouble shooting with them regularly helps.

 

Our Dr. told us from the beginning it takes two years for the average child to recover from Chronic LD and we could count some of the time spent treating for PANDAS. There is still a long expensive road ahead and I just want to go to Mexico and sit on the beach.

 

Anyway, I don't know if my post helped at all...... just wanted to say 'I KNOW' and to hang in there.

 

-Wendy

Edited January 13, 2011 by SF Mom

[LNN]

I'm curious about using the amox 3x/day. That's not one I hear often for lyme. Is that because of the family's sensitivities to other abx? Is a combo of abx on the horizon? Or just amox?

 

I do hope you see relief soon. Of all the families on the forum, you guys have struggled so much. Time for you to catch a break.

[sf_mom]

I too wondered the same thing about combo'd antibiotics.

[Fixit]

Our younger son is doing a ton better emotionally but he picked up his first TIC of shoulder shrugging in the last week.

 

SF...sorry i don't remember...and i'm pretty sure you said you are treating all of you kids for lymes..or does this child have something else?

 

and how long have you been treating your younger son?

 

did you change or add anything recently?

is it possible he caught something, ie other illness?

or do you think it is herxing?

 

or is the wound to fresh to even think about?

[lyme_mom]

My llmd is also sensitive to costs and will treat symptoms and not rely on test results. Trazadone is also good at night for sleep in small doses if 50 to 200 mg.

[dcmom]

Ugh-pixiesmommy....

 

Don't have any advice,just wanted to let you know I feel for you. We moved recently, my kids hAve had a flare up and we are looking into Lyme. We have been to so many docs- it is costing so much and my head is spinning. This is really tough.

 

I think it is important to try to make a game plan, at a time when you are of clear mind and not with the kids. ( That is almost never for me). Try to work through these appts methodically. I have a rule that if a test is not going to really affect the treatment course- we absolutely do not do it.

 

Are there any other llmd's in your area? It is so helpful to have a doc you can trust, and really work with.

 

Hope Pixie is on the mend- you do an unbelievably great job with her.

[sf_mom]

This child with the new shoulder shrug is confirmed positive for both Babesia and Bartonella, IND Lyme although they think its there. We have not done the provocation testing for him as we are now treating Babesia and will most likely treat for Lyme based on clinical diagnoses.

 

We are in the 10th week of treating for Babesia. I do believe the new shoulder shrug is a herx and should resolve in fairly short order... it is mild. Remember new symptoms can crop up from herxing. It took me a couple of days to figure it out its was a TIC. This child has never 'really' had TIC's unless you consider humming while eating a TIC. Surprisingly he is not humming as much. Our main issues with him were OCD, rages, mood, sensory issues, tip toe walking, anxiety in over stimulating environments, sensory issues, sick a lot, etc. etc. With treatment for PANDAS (Azithro from Nov. 2009), Lyme (Azithro/Alinia from Sept. 2010), Babesia (Azithro/Alinia/Sulfamate -10 weeks) the OCD is gone, rages are gone, mood is much improved and manageable, tip toe walking is still present but less frequent, never really sick anymore, still has some anxiety and sensory issues, rashes and now shoulder shrugging.

 

Treatment for Babesia is minimum of 4 months, if he is still positive for Babesia at the end of that timeframe they will then treat for another 10 months. So, we are potentially at the very beginning of treatment. He has Babesia Ducanti which predominately a west coast strain but understand it is not uncommon out east now. Its apparently, is a tough parasite to eradicate. Babesia and Bartonella are both RBC parasite. No wonder his RBC was always coming back low.

 

Hope that gives you some perspective.

Edited January 14, 2011 by SF Mom

[Fixit]

Hope that gives you some perspective.

 

VERY much so!!! Thank you !

[lyme_mom]

I'm curious about using the amox 3x/day. That's not one I hear often for lyme. Is that because of the family's sensitivities to other abx? Is a combo of abx on the horizon? Or just amox?

 

I do hope you see relief soon. Of all the families on the forum, you guys have struggled so much. Time for you to catch a break.

Amoxicillin is one of the best drugs for lyme along with doxy. My kids had amoxicillin three times a day during their treatment. (eventually my son had almost every combo there is :-)) They start with amoxicillin if u r too young for doxy, are a pregnant mother or the doxy bothers you. It is apparently excellent for lyme.

[lynn]

Just want to add that when I gave DS high dose Vitamin C for a while, he presented with a series of bizarre symptoms that stuck around for a day or so, then left. He had strange acne, warts, weird rashes, a little fever. At the time I believe it was viruses on their way out. I did that treatment for about 3 weeks ramp up (can't remember the dose, but it seemed quite high), 3 weeks high dose, 3 weeks ramp down. It did seem to help ultimately, but the symptoms were hard to deal with.

[Iowadawn]

I'm curious about using the amox 3x/day. That's not one I hear often for lyme. Is that because of the family's sensitivities to other abx? Is a combo of abx on the horizon? Or just amox?

 

I do hope you see relief soon. Of all the families on the forum, you guys have struggled so much. Time for you to catch a break.

 

 

1000mg/tid Amox and 500mg zith a day is what our LD prescribed for our oldest. Is MUCH easier on her insides than some other stuff. I am seeing improvement with her, mellower, and more clear thinking--she presents wayyy differently than my boy.

 

RE our son. HD IVIG a week ago. We were crashing & burning after the last two by now. All I'll say is that I am NOT carrying around any shoes so as to avoid any shoe-dropping thingy. All I will update now.

 

Dawn

[sf_mom]

This is fantastic news!!!!!!!!! We are cheering for your son's full recovery in CA.

 

AND, I am willing speculate that perhaps it isn't the hdIVIG that was the problem but the wrong antibiotic protocol when chronic Lyme was involved with children originally treated for PANDAS.

 

-Wendy

[pixiesmommy]

It could be herxing. I will try to be more diligent about epsom salt baths-- provided I can get her into them. I think we are going to change doctors- apparently there is another in the area.

 

I am totally emotionally and physically crashing. This same dr started me on thyroid meds for hypothyroidism, and I am totally bottoming out since starting them about 2 months ago. Looks like I will be off to the endocrinologist too.

 

Something better give soon, because we are tapped out financially. DH and I talked last night and I basically told him I am about to give up on everything and just say, "Screw it. We're not getting any better from anything, so why keep struggling to afford it?"

 

I know I'll feel differently in a few days when I get another small influx of energy, but for now, I am totally BLAH.

[Fixit]

It seems like everyone is crashing...i was holding well with a new panda kid for christmas and original panda holding steady...

but last night and today i have lost it.... a couple other moms i just talked to are crashing too...i will vent more later

 

on your thyroid...

i find it better to split the pill..1/2 upon waking..and other 1/2 before lunchish...lets say...

i thinkt that will be the new way to take it soon..my docs are listening to me

i told my docs for years about taknig it..feeling fine..even zesty...then complete crash..cant stay on my feet, have to get horizontal...i think the rush of hormones all at once is too much..split it and it keeps it more balanced for the day....

i find