Dx Lyme - after PEX for PANDAS

[RNmom]

I know some folks have been following my posts because they are considering Bicillin shots for their own children. I can say that the series of Bicillin shots every four days (for a total of four shots) really worked well to pull my ds14 back from the edge of a complete PANDAS relapse (which began after we started treating Lyme with Doxycycline in the beginning of November 2010). Anyone on the forum who has had personal experience with PANDAS will understand when I say that the "wild look in his eyes" went away after the first Bicillin shot. By the time ds14 had completed all four Bicillin shots he was functioning much better. We are grateful.

 

Before I go on I have to mention that we have two LLMD's helping us. This was not planned. However ds14 began his PANDAS relapse the week before Thanksgiving and we were not able to get a hold of either our PANDAS doc or the original treating LLMD. Fortunately, the 2nd LLMD in our own town treats both Lyme and PANDAS. So, LLMD #2 ordered the series of Bicillin shots. It was LLMD #1 who had started the Lyme treatment at the beginning of November 2010 with Doxycycline. The Doxy caused a big Herxheimer reaction and most likely set off the PANDAS relapse. What a mess!

 

Sadly, the Lyme, the co-infections, and the Candida problems are complicating the PANDAS recovery. LLMD #2 also increased our son's Diflucan dose six fold! He did this at the same time that he started the emergency Bicillin shots. So, by Thanksgiving Day while ds14 had more flexible conversation, improved cognitive functioning, and less OCD, he had also developed a tremor in his hand (more pronounced than the chorea which he had in the past with PANDAS) and he was acting paranoid... as if "people were hurting him!" I looked up Diflucan in the PDR and at very high doses some possible side effects were dizziness, tremors, and "feeling like people were hurting them." YIKES! I stopped the Diflucan and reported it to his LLMD after the holiday. The paranoia and tremor had stopped in @32 - 48 hours after we stopped the high dose Diflucan. The LLMD #2 switched ds14 to Nizoral as it has less of a central nervous system effect. I did have to endure a "lecture" (of sorts) from the LLMD about the "super yeast" that the high dose Diflucan was supposed to be killing. I am sure that the high dose Diflucan was getting to the "deeply embedded yeast" and perhaps my ds14 was having a huge Herxheimer reaction. However, I asked the LLMD #2 if we could try to treat yeast without driving my ds14 crazy. That has proven to be the crucial question in all that we do to treat Lyme, co-infections, and yeast.

 

So... I need help! Please!! I am without any experience with Lyme, co-infections, Herxheimer reactions, and the various treatment options ... not to mention yeast. Balancing these new concerns with a recovery from severe PANDAS is a nightmare.

 

DS14 has Bartonella and Babesia... The "triple threat" I am told. We have chosen to treat the Babesia first as I have learned that you cannot successfully treat Bartonella and Babesia together. According to our LLMD #1 the two different medicines undermine each other and result in ineffective treatment of both co-infections. This (in a word) stinks! So, we stared Mepron for Babesia last Monday. We are continuing to treat Lyme with Doxy and Azithromycin. We also cover ds14 for PANDAS with Augmentin XR. In 4 hours after the first dose of Mepron ds14 said, "I do feel a little better." He was refering to a decrease in the terrible anxiety that has been off the charts. In 24 hours the "constant noise in his head" stopped. This "noise" had begun over Thanksgiving and I was really beginning to fear that ds14 had a psychotic process going on. However, when questioned he was very consistent in localizing the "noise" inside his head - or more specifically in both ears. I had called his neurologist and asked for an MRI but did not get a response. Also, LLMD #2 (who had ordered the Bicillin series) simply said "call your doctor." The pediatrician said "call your neurologist." In other words, no one wanted to deal with it - most likely for different reasons. I was "out on a limb" and very frightened for my son. You can imagine my joy when the "noise stopped" after starting the Mepron.

 

I wish Lyme and coinfections could be treated faster. I hope we are on the right track. DS14 did have a 5th Bicillin shot this past Thursday (12/16/10). Four hours later his cheeks were red and by nightfall he was very anxious and had more OCD. PANDAS? Lyme Herx? Babesia Herx? Yeast flare up? Who knows! I am trying to remain calm and stay the course. We will not be doing anymore Bicillin shots for a while. LLMD#2 is ambivalent about the need and PANDAS doc does not feel they are strong enough for serious PANDAS treatment. LLMD#1 would like to continue Bicillin every week or two weeks. I would too - but ds14 cannot not take it. He is anxious over "having to have a painful shot in my butt" to the point that it interferes with his cooperation with the rest of the treatments.

 

So for now we are using:

 

Doxycycline, Azithromycin, Mepron, Nyzoral, and Augmentin XR. Also, medical grade probiotics (VSR #3 DS which has 900 Billion units of lactobacillus and, of course, lots of other supplements) I think we will be moving on to cyst busters such as Flagyl alternating with Tindamax in a few more weeks - I do not have the protocol in front of me. We are now working mostly with LLMD#1.

 

I am so grateful for this forum and the PANDAS forum. I'm learning from so many different people here. It is amazing to log on and read posts that confirm we are not the only family going through this... AND, I forgot to mention my ds21 also just got diagnosed with Lyme (caught early) and LLMD is pretty certain I have Lyme, Babesia, and Bartonella... My own Igenex and MY Lyme ID tests are due to be back in a week or two. No wonder I am tired!

 

Sorry to write so much - Thanks in advance to anyone who actually reads all of this!

Edited December 19, 2010 by RNmom

[sf_mom]

He is on a lot of antibiotics and herxing is anticipated with the mix!!!!!!

 

You are right, you do need to treat the Babesia and it can be tough.... Our Dr. treats for a minimum of four months and then retests. If it is not gone, he treats for another 10 months. We are treating our younger son with Alinia/Azithro/Sulfamate (Sp?). He also has Bartonella and we will address it later on. Do you know which strain of Babesia? The Mepron will really help to get the bacterial load down and you should see marked improvement 'potentially' at the four month mark.

 

Since I am undergoing treatment myself, I can honestly say sometimes its too much. I was on 1,500 m.g. of Tindamax per day and it killed me with non-stop symptom management and splitting headaches that would not allow me to sleep. I spoke with our Dr. and they said lower to 1,000 m.g. per day and I am doing so much better and hitting a stripe with treatment. They have now changed up my protocol slightly to provoke for Bartonella, I just added herbs 4 days ago and I am already having they following symptoms: dizziness, chest discomfort, just not feeling well, feeling like I need a deep breath... and the fatigue set in a little today.

 

Anyway, the reason I mention the above is backing off might give him some reprieve in symptoms. Rather than add the bacillin shots or Abilify I'd focus on getting those toxins out from all the die-off. Are you using Bur Bur, activated charcoal or bentonite? Often children with multiple co-infections have high histamine levels as well and we use Benadryl and Ketotifen daily to get them down. It can take up to two weeks to see results... but I have a funny feeling you'd get better results from a nightly dosing of Benadryl than Abilify.

 

Wow, I think I know who LLMD #2 is based on protocol but wondering who LLMD #1 that is treating your son.

 

-Wendy

[sptcmom]

You sound like you're on the right track. Thats pretty heavyduty aggressive approach. DS had 2200mgs of ABX -augmentin, biaxin and zithro= really BAD herx so our LLMD #1 switched from zith to Bactrim. Pretty bad herx for about 6 weeks- head tics, OCD etc. Week 8 we decided got called for an appt to see LLMD#2 and decided to go. We were hoping to reduce the abx and add herbs and homeopathic. Found out that DS has sulphites in his urine and stopped Bactrim and added anti microbial herbs. We have about 30- 32 meds, herbs, vits and supplements to balance out each day.

I will followup with LLMD#1 simply because Im curious about cyst busters and for continued second opinion.

 

I found a good LLMD for myself and have started Zith with good results. The herxing has been secere flu like symptoms, exhaustion, mental confusion, being unable to express emotions, depression etc. That lasted 4 weeks with a couple good days thrown in. Now its slowly getting better with my mental clarity. Im still not getting enough rest/sleep since DS has so many sleep issues but on the days I do get enough rest (DH on DS sleep duty),I feel great and can think, find words, express myself.

I have many neurological symptoms, radiculopathies, disk herniations, sciatica- bilateral, degenerative arthritis and the bitter cold of the northeast only makes the pain and dysfunction ten times worse. So, like the rest of us, Im dealing, stretching, pain meds etc so I can be there for my son. Im very hopeful that in a couple of years the end will be in sight.

I wish the best of luck in all your endeavors. You have us for support/venting anytime you need.

Jodie

[tpotter]

Yikes...Bicillin every 4 days? My son was herxing like crazy for 2 weeks after the 1 bicillin injection! He's on bicillin injection every MONTH for (I think) 3 months...maybe 4. Plus, Azith for PANDAS and MycoP, and he's supposed to have started flaggyl 1 week on/1 week off 2 weeks ago, but was begging me to let his body rest. I'll start the flaggyl over vacation (after we return from vacation.) He's also on diflucan for yeast, and takes sacchromyces boullardi and probiotics, plus takes bentonite clay (when I remember to give it in time). Oh...I almost forgot...we're also doing IVIG every 8 weeks (had #1 so far.)

 

Sounds like they are treating your son maybe too aggressively? Mine ended up with pancreatitis when doxy was added in. Be careful.

 

Personally, I'd rather slow things down a bit than throw it all at once (we're also treating all 4 of us in the family, so I don't think we couldhandle it any more aggressively.

 

Good luck.

[RNmom]

Thanks SFmom! It is huge help to get this feedback right now. I will send you a pm.

 

He is on a lot of antibiotics and herxing is anticipated with the mix!!!!!!

 

You are right, you do need to treat the Babesia and it can be tough.... Our Dr. treats for a minimum of four months and then retests. If it is not gone, he treats for another 10 months. We are treating our younger son with Alinia/Azithro/Sulfamate (Sp?). He also has Bartonella and we will address it later on. Do you know which strain of Babesia? The Mepron will really help to get the bacterial load down and you should see marked improvement 'potentially' at the four month mark.

 

Since I am undergoing treatment myself, I can honestly say sometimes its too much. I was on 1,500 m.g. of Tindamax per day and it killed me with non-stop symptom management and splitting headaches that would not allow me to sleep. I spoke with our Dr. and they said lower to 1,000 m.g. per day and I am doing so much better and hitting a stripe with treatment. They have now changed up my protocol slightly to provoke for Bartonella, I just added herbs 4 days ago and I am already having they following symptoms: dizziness, chest discomfort, just not feeling well, feeling like I need a deep breath... and the fatigue set in a little today.

 

Anyway, the reason I mention the above is backing off might give him some reprieve in symptoms. Rather than add the bacillin shots or Abilify I'd focus on getting those toxins out from all the die-off. Are you using Bur Bur, activated charcoal or bentonite? Often children with multiple co-infections have high histamine levels as well and we use Benadryl and Ketotifen daily to get them down. It can take up to two weeks to see results... but I have a funny feeling you'd get better results from a nightly dosing of Benadryl than Abilify.

 

Wow, I think I know who LLMD #2 is based on protocol but wondering who LLMD #1 that is treating your son.

 

-Wendy

[RNmom]

Hi sptcmom!

I am starting to agree that ds14 is being hit hard with an aggressive course of Lyme treatment. Just starting Doxycycline in the beginning of November created such a bad Herx that he almost fell back into full blown PANDAS. It has taken me this long to understand fully how that could happen. I think I am ready to go slower (and surely my ds14 is ready)!

 

I read your description of your own struggle to balance caring for your family with your own Lyme treatment with great interest. My heart goes out to you. I fear I will be in the same boat soon. My Igenex test will be back in a few weeks... Thank you for your feedback - it helps so much. I hope you start to feel better soon.

 

You sound like you're on the right track. Thats pretty heavyduty aggressive approach. DS had 2200mgs of ABX -augmentin, biaxin and zithro= really BAD herx so our LLMD #1 switched from zith to Bactrim. Pretty bad herx for about 6 weeks- head tics, OCD etc. Week 8 we decided got called for an appt to see LLMD#2 and decided to go. We were hoping to reduce the abx and add herbs and homeopathic. Found out that DS has sulphites in his urine and stopped Bactrim and added anti microbial herbs. We have about 30- 32 meds, herbs, vits and supplements to balance out each day.

I will followup with LLMD#1 simply because Im curious about cyst busters and for continued second opinion.

 

I found a good LLMD for myself and have started Zith with good results. The herxing has been secere flu like symptoms, exhaustion, mental confusion, being unable to express emotions, depression etc. That lasted 4 weeks with a couple good days thrown in. Now its slowly getting better with my mental clarity. Im still not getting enough rest/sleep since DS has so many sleep issues but on the days I do get enough rest (DH on DS sleep duty),I feel great and can think, find words, express myself.

I have many neurological symptoms, radiculopathies, disk herniations, sciatica- bilateral, degenerative arthritis and the bitter cold of the northeast only makes the pain and dysfunction ten times worse. So, like the rest of us, Im dealing, stretching, pain meds etc so I can be there for my son. Im very hopeful that in a couple of years the end will be in sight.

I wish the best of luck in all your endeavors. You have us for support/venting anytime you need.

Jodie

[RNmom]

tpotter!

Wow! Thanks for responding - I have been wondering about you and your sons. You know it is strange. DS14 really needed the series of four shots four days apart just before Thanksgiving. His agitation, red rash, "wild eyed" look, mental fog, and paranoia all reduced gradually in correlation with the progression of the shots. However, aggressive yeast treatment (600 mg of Diflucan daily) threw off the benefits of that Bicillin series. After switching to Nyzoral 100mg daily for yeast things settled back down. We added in Zithromax and things got even better. ... then we had Bicillin shot #5 because I wanted to push for more improvement. Instead, it pushed his immune system too far, I think.

 

Now, I am waiting for this Herx to pass. We will go slower. LLMD#2 ordered the series of four Bicillin shots to pull ds14 back from the edge of a complete PANDAS relapse. It seems that was the right thing to do. LLMD#1 gave Bicillin shot #5 and said it would help with both PANDAS and Lyme to do this weekly or every other week. I think this experience is teaching us where to draw the line with ds14 - maybe later on Bicillin will be ok - although he might need some convincing then.

 

How is your younger son holding up? It sounds like you have slowed things down a bit and that has been helpful. How is your older son? I hope things continue to go well for your family. I know you have had a very long a difficult experience getting them help. Take Care!!

 

Yikes...Bicillin every 4 days? My son was herxing like crazy for 2 weeks after the 1 bicillin injection! He's on bicillin injection every MONTH for (I think) 3 months...maybe 4. Plus, Azith for PANDAS and MycoP, and he's supposed to have started flaggyl 1 week on/1 week off 2 weeks ago, but was begging me to let his body rest. I'll start the flaggyl over vacation (after we return from vacation.) He's also on diflucan for yeast, and takes sacchromyces boullardi and probiotics, plus takes bentonite clay (when I remember to give it in time). Oh...I almost forgot...we're also doing IVIG every 8 weeks (had #1 so far.)

 

Sounds like they are treating your son maybe too aggressively? Mine ended up with pancreatitis when doxy was added in. Be careful.

 

Personally, I'd rather slow things down a bit than throw it all at once (we're also treating all 4 of us in the family, so I don't think we couldhandle it any more aggressively.

 

Good luck.

[sptcmom]

Thanks for your kind words.

Listen, we had the same immune system issue/question for our PANDAS doc #1 (in NJ). namely at what point does one stop improving the immune system so much. Most PANDAS/lyme parents are boosting the immune system, modifying it with steroids etc. Most of the results are temporary. Many are trying herbs, vitamins, dietary modifications and healing the gut in an attempt to "improve" the immune system. Our PANDAs doc says there needs to be a balance and observed thru bloodwork. He wants us to monitor the IgG subclasses, the IgA and IgA levels as well. An overactive/superefficient immune system can create its own set of problems.

DS for example has had a primary immune deficiecy since 2 yrs of age. I used to hyper manage that with very regular green smoothies, organic juicing, 100% organic diet, raw foods, echinaecea, astragalus, goldenseal etc you name it. The immune system went whacko on us and at 3 yrs of age DS ended up with severe Vitiligo. Further research into the causes etc made me understand what had happened.

Our PANDAS doc agreed with that scenario having triggered the Vitiligo. I am now trying to seriously understand how the heck am I supposed to balance things out. Everything in moderation is my motto right now. Fingers crossed, tons of prayers and heres hoping......

Jodie

[RNmom]

There is hope Jodie. I tell myself that all the time. Prayers keep us going too. I think I just learned a big lesson from my son's recent Herx after the 5th Bicillin shot. I am not sure if I mentioned that he was four days into Mepron (for Babesia) when he had it. He had a beautiful response to the Mepron. He told us that he was feeling less anxious and his red rash (which is his "banner" of immune system overdrive) was light pink and much less dense. Also, this constant noise in his head "went away." I should have considered that he might be poised to Herx just from the Mepron sometime later in the week or next week. Having no useful experience with the Herx issue I gladly took him in for Bicillin #5 - thus generating too much die off at once. But, how else do we find out where the line is with our kids? That line will most likely continue to change throughout the course of treatment. I think sometimes we will go over the line and generate a bad Herx by accident. Hopefully if we are watching closely and thinking about the possibility all the time we will catch it early enough. I know I will be very thoughtful about this in the future.

 

Do you (or anyone else who might be reading this) know how many days are in the life cycle of Babesia? Do you anticipate Herx reactions according to the length of the life cycle of what you are treating? I would love to know.

 

Thanks for you encouragement and support Jodie. Hang in there - at least we are not alone! -- Michele in Virginia

[sf_mom]

Growth Cycles: Bartonella is 1 to 2 weeks, Babesia is 2 to 3 weeks and Lyme is 3 to 4 weeks. Depending on how they are co-infected you might not be able to pick up on specific cycles.

[Megs_Mom]

There is hope Jodie. I tell myself that all the time. Prayers keep us going too.

 

Do you (or anyone else who might be reading this) know how many days are in the life cycle of Babesia? Do you anticipate Herx reactions according to the length of the life cycle of what you are treating? I would love to know.

 

 

Thanks for you encouragement and support Jodie. Hang in there - at least we are not alone! -- Michele in Virginia

Our llmd (dh) says that month one on babesia treatment should not cause a herx, but that we will likely see in months 2-3, then should calm in month 4. Life cycle is 2-3 weeks. She treats for 5 months. 4 to clear and another to be sure.

 

Rn, thanks for sharing your story, we are very hopeful for you!!

Edited December 21, 2010 by Meg's Mom

[RNmom]

Thanks SFmom and Meg's mom for the life cycle info. DS14 seems to have symptom flares in 2 week cycles. We know he has Bartonella (he has the rash) but have to wait until Babesia treatment is finished before addressing that. It is going to be a long 4 - 6 months!

 

Meg's mom, what kind of Herx might we expect 3 months into treating Babesia? (That sounds a little ominous... )

[smartyjones]

. We know he has Bartonella (he has the rash) but have to wait until Babesia treatment is finished before addressing that.

 

 

rnmom -- if you don't mind, i'm curious -- where and how big is the rash? is it the cat scratch stretch marks?

[Megs_Mom]

Thanks SFmom and Meg's mom for the life cycle info. DS14 seems to have symptom flares in 2 week cycles. We know he has Bartonella (he has the rash) but have to wait until Babesia treatment is finished before addressing that. It is going to be a long 4 - 6 months!

 

Meg's mom, what kind of Herx might we expect 3 months into treating Babesia? (That sounds a little ominous... )

 

Yes, it worries me too. She has him on pretty high doses of probiotic, vit c, d, e, b12, etc in effort to keep it under control. His primary symptom from the Babesia is roving joint pain, dizziness, and debilitating neck pain. She simply said that all of those things might be markedly worse for months 2-3. He is well aware of that fact, but it seems worth it. Every episode he has had has left him some amount of residual pain and loss of range of movement, and it has been building up for about 2 years. Honestly, we thought he had some sort of debilitating and degenerative mystery illness, and are both thrilled that this might mean a few months of bad pain, rather than a lifetime of lost hope. I'm sure it will be bad, but she'll work with us to minimize. He is an adult however, and better able to think long term about all this than a child or teen.

[sf_mom]

I am having dull aches right now in my lower back. I have had back issues prior to Lyme Diagnoses off and on for about 6 years. When I started treatment my back felt a ton better..... and over the last two days its killing me, its like nerve pain or something. Feels like I have the flu in lower back and can hardly lift my daughter. I've been on multiple antibiotics for 3 months now. We are currently provoking for Bartonella. Trust me, I'll be happy when this passes.

 

Meg's Mom when did your DH start treatment? Your husband neck issues sound painful... I sure hope his herxing moments are brief but your LLMD might be right about an increase in symptoms in the 3rd month.

 

-Wendy

Edited December 22, 2010 by SF Mom