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How do you prepare for Lyme treatment?


LNN

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So I'm not sure if I'm in this Lyme boat yet. DS 8 has been battling PANDAS for 2 years. Crystal clear relationship with strep. But it's starting to look like Lyme may also be in the picture. In addition to having all the lovely Pandas symptoms, he has terrible muscle pain (went away for 4 weeks after IVIG in June, now back with a vengeance) and huge brain fog. We get our Igenex results back on Thur, but not sure I'll believe it if it's negative because we measured C3d levels at the same time as the Igenex blood draw and they're at 52 (normal is below 8, his was 51 in March). I've read that high C3d can lead to false negatives. I have dismissed Lyme until now because he's always responded beautifully to month-long prednisone tapers.

 

But post IVIG has been horrible. We did see what we thought was improvement at week 8 in terms of behaviors. That improvement remains. But the muscle pain and brain fog are getting worse. On Sunday, we switched from liquid augmentin 800 ml/day to Augmentin XR 1000 mg/day (DS is 63 lbs). 48 hours later, he is noticeably worsening - lots of pain and says something feels really wrong (but can't explain it). Last night, he started a vocal tic (first time in the year since pex). Herx? Something is making it worse and I can only think that it's the abx change. This shouldn't be happening if it were "just" Pandas, should it?

 

So we head to the immunologist in 2 days. We have an appt with Dr J in Dec. but I suspect I'll be calling to get on a waiting list for any earlier cancellation. I'm not sure I want to add a second abx until we're in the hands of an LLMD since DS is already hurting so much. But to keep myself from feeling helpless, I know there are things you can do to prepare the body for lyme treatment, to lessen the pain of a herx. Anyone have any suggestions?

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So I'm not sure if I'm in this Lyme boat yet. DS 8 has been battling PANDAS for 2 years. Crystal clear relationship with strep. But it's starting to look like Lyme may also be in the picture. In addition to having all the lovely Pandas symptoms, he has terrible muscle pain (went away for 4 weeks after IVIG in June, now back with a vengeance) and huge brain fog. We get our Igenex results back on Thur, but not sure I'll believe it if it's negative because we measured C3d levels at the same time as the Igenex blood draw and they're at 52 (normal is below 8, his was 51 in March). I've read that high C3d can lead to false negatives. I have dismissed Lyme until now because he's always responded beautifully to month-long prednisone tapers.

 

But post IVIG has been horrible. We did see what we thought was improvement at week 8 in terms of behaviors. That improvement remains. But the muscle pain and brain fog are getting worse. On Sunday, we switched from liquid augmentin 800 ml/day to Augmentin XR 1000 mg/day (DS is 63 lbs). 48 hours later, he is noticeably worsening - lots of pain and says something feels really wrong (but can't explain it). Last night, he started a vocal tic (first time in the year since pex). Herx? Something is making it worse and I can only think that it's the abx change. This shouldn't be happening if it were "just" Pandas, should it?

 

So we head to the immunologist in 2 days. We have an appt with Dr J in Dec. but I suspect I'll be calling to get on a waiting list for any earlier cancellation. I'm not sure I want to add a second abx until we're in the hands of an LLMD since DS is already hurting so much. But to keep myself from feeling helpless, I know there are things you can do to prepare the body for lyme treatment, to lessen the pain of a herx. Anyone have any suggestions?

 

For ds...and this is a concern..because i would like to try to switch possibly but......

when we tried xr the 1st time this year we had joint pain/muscle pain 6-7 days in....(we hadn't used pen based abx for 4 years...doc said allergic to it)but based on it may have been rf we retried...i was devistated....

went off....scott said he wants to try again..i thought he was a little off on this...but he said since the reaction was so delayed...he thinks that the aug is just wiping out everything and letting fungus overgrow and causing the pain..so we tried again and used diflucan....

good news is no problems the entire 30 days...bad news..even though i thought i saw mild improve...it was just wishfullness.

that being said..i also wonder if we needed to just get his body out of complete overdrive with the taper...so that the abx might have a real chance to do something...as it's not trying to get his whole system to calm down...

 

also concerned about being on diflucan for extended time

Edited by Fixit
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It definitely sounds like Herxing to me!!!! Hopefully it won't last long. I highly recommend holding steady with the antibiotics because the XR is obviously doing something to help. Our son started Alinia 20 days ago and we saw an immediate Herxing response (within hours of starting). His TICS did not resurface until we were a at least 10/12 days into treatment. It seemed like every day he was adding a symptom. Flu like symptoms initially, mood liability, one tic per day that built up to flairs of multiple stuff. It does seem like the TICs are starting to settle out. Yesterday was much better although we still saw a flair at bedtime. So, its been 20 days and we are still seeing Herxing. It takes 90 days to replace WBC and 120 to replace RBC. If there is anything intercellular to the blood cell it could take a while (although you should see improve over this time). For example: babesia is a parasite that lives in the inner RBC.

 

Things you can do to help with Herxing. Bentonite Clay will absorb the acids from the liver bile rather than sending it back out into the body for processing (how our LLMD explained it to me).

 

  • Charcoal pills at bedtime
  • Bentonite Clay at bedtime
  • Motrin
  • Epsom Salt Warm Baths (A LOT)
  • Hot Showers
  • Lots of water
  • Food (helps us)

 

Edit: I also put a container of water next to his bed at night that has the following sports drink mixture with Potassium, Magnesium, Manganese, Calcium, Chromium: It definitely makes the water taste better and its always gone by the morning. It can be purchased at Whole Foods: http://www.iherb.com/Alacer-ElectroMix-Natural-Lemon-Lime-Flavor-36-Packets-1-oz-4-g-Each-Discontinued-Item/3409?at=0

 

I am so glad to know you are making an appointment with an LLMD!!!

Edited by SF Mom
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It definitely sounds like Herxing to me!!!! Hopefully it won't last long. I highly recommend holding steady with the antibiotics because the XR is obviously doing something to help. Our son started Alinia 20 days ago and we saw an immediate Herxing response (within hours of starting). His TICS did not resurface until we were a at least 10/12 days into treatment. It seemed like every day he was adding a symptom. Flu like symptoms initially, mood liability, one tic per day that built up to flairs of multiple stuff. It does seem like the TICs are starting to settle out. Yesterday was much better although we still saw a flair at bedtime. So, its been 20 days and we are still seeing Herxing. It takes 90 days to replace WBC and 120 to replace RBC. If there is anything intercellular to the blood cell it could take a while (although you should see improve over this time). For example: babesia is a parasite that lives in the inner RBC.

 

Things you can do to help with Herxing. Bentonite Clay will absorb the acids from the liver bile rather than sending it back out into the body for processing (how our LLMD explained it to me).

 

  • Charcoal pills at bedtime
  • Bentonite Clay at bedtime
  • Motrin
  • Epsom Salt Warm Baths (A LOT)
  • Hot Showers
  • Lots of water
  • Food (helps us)

 

Edit: I also put a container of water next to his bed at night that has the following sports drink mixture with Potassium, Magnesium, Manganese, Calcium, Chromium: It definitely makes the water taste better and its always gone by the morning. It can be purchased at Whole Foods: http://www.iherb.com/Alacer-ElectroMix-Natural-Lemon-Lime-Flavor-36-Packets-1-oz-4-g-Each-Discontinued-Item/3409?at=0

 

I am so glad to know you are making an appointment with an LLMD!!!

 

sf..kudos...idk how you do it...

when you tell us of all the herxing..(i believe you've spoken of this before with abx, probiotics,etc)..hold through..and don't abondon the protocal...where maybe myself and others,as soon as i see a flare i think bad reaction..must stop now!!!!...

how do you hold through.....seriously

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I don't know..... I guess I've seen it so much in our son after 3 hdIVIGs, up and down on the Azithromycin, the adding of Omnicef to Azithromycin, etc. When our son still had a very mild infrequent coughing TIC in June and we added Omnicef to his treatment protocol the cough elevated to daily and it came in jags and it was much more productive and then it cleared completely within 30 days. I had heard the throat clearing so much it was pure bliss when it finally stopped. I told Dr. K at the time that I didn't believe the cough was a TIC that he was actually coughing something up 'like the end of a cold'.

 

Honestly, it is hard to have your son completely TIC free and see him look like he is regressing with the re-emergence of TICs. Even my husband is now getting the concept of herxing down. We are seeing stuff we haven't seen in 6 months but it is much more subtle and thankfully it comes in flairs. Right now its typically at bedtime, a couple of days ago it was throughout the day. I've been doing homework and hanging out with our son since he finished school today and I haven't noticed a single TIC. Tonight at bedtime I'm sure I'll see blowing on his hands through his mouth, sniffing finger tips, blowing through his nose on his hands, etc.... all rapid fire stuff, quick, two three times in a row. I'm sure I'll post when it stops... and then I suspect that Dr. will switch up the antibiotics again forcing another Herx.

 

Hopefully, my posts will give you some confidence you are doing the right thing BUT a good LLMD will walk you through each transition. Even our LLMD said getting used to Herxing was difficult for him at a first. He said he was having to make decisions if someone should go to ER or not. That is how bad it can be for some with real advanced LYME. Apparently, they can even tell (if they are good) which strain might be present by taking them off antibiotics completely and seeing how quickly they get sick again.

 

I had done this with my Daughter in June. She was so moody, crying about absolutely every thing I took her off antibiotics, I swear she was sick with 'flu like' symptoms within days. I put her right back on antibiotics as a result. Within a week of restarting the antibiotics she was better. Dr. said her response was typical of either Bartonella or Babesia (I can't remember which co-infection now). If she had gotten sick 3 to 4 weeks after stopping its more indicative of Lyme. They are letting that experience guide them on which direction to take on testing for specific DNA, etc. I essentially pulsed her treatment without knowing.

Edited by SF Mom
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That's very interesting sfmom. I have never heard that about how fast you get sick after stopping Antibiotics can indicate which infection is the main problem. It must be a sign of bartonella because I don't think babesia is affected by antibiotics as much as bartonella is. The great thing about this forum is that we can share these little tidbits from our llmds.

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I think you are right about it being Bartonella. I was having difficulties remembering stuff from the appointment after my results came in. I do love sharing the tidbits. I swear we'd never be at our phase of recovery for my children if it hadn't of been for the forum. I also would have lived with my migrating symptoms and not have put the pieces together.

 

I am very hopeful for our entire family.

Edited by SF Mom
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