Newly diagnosed for Lyme - after PEX for PANDAS

[RNmom]

AS IF the "learning curve" weren't steep enough with PANDAS now we have newly diagnosed chronic neurologic Lyme! Also, one of the coinfections: Bartonella. (Two summers ago, we thought the "red stretch marks on his lower back/hip area" were caused by a growth spurt! I just feel sick about this when I think back...)

 

So, in addition to his three times daily dose of Augmentin XR 1,000 mg for PANDAS (he is 165lbs and now 3 months post PEX) we have begun three times daily Doxycycline 100mg. We started last Thursday and he had a significant Herxheimer (sp?) reaction. Increased red rash on face and neck, increased anxiety/agitation, the "red stretch marks" on his hips are now all over his pelvic region - back and front, increased involuntary movements, increased OCD (checking, trouble going through doors). Granted, the involuntary movements and OCD are no way near the levels he was at just prior to his plasmaphresis last July. BUT, any increase in these "PANDAS symptoms" are cause for aggressive intervention as that only gets worse to the point of no control.

 

Here is what I did: I called our PA (also a naturopath) who is treating the Lyme and told her I was very concerned about his response to the Doxycycline. She said it was most likely a sign that the Lyme was being treated but told us to come in for a Bicillin shot. She uses these to treat Lyme too. We are now 24 hours after the shot and he is 75% less anxious, with more relaxed body movements, and minimal OCD. The shot helped!! I am way too new at this to reliably articulate why this helped. But, we can get these shots once a month (even every week if needed) and I am glad to see that it is working. Then, yesterday, we (purely by chance) had an appointment with his PANDAS doctor. She is o.k. with the Augmentin/Doxy/Bicillin treatment plan. That helps.

 

What else should I be thinking about at this point in the treatment process?

 

We are treating high Candida levels with Difulcain, medical grade probiotics (VSL 3 DS), Theralac, and TruFiber.

 

We are treating his gut with the GFCF diet (based on food allergy testing). I am told this will help his immune system too.

 

He was started on Valtrex at the end of September for a high EB titer. However, as that can cause anxiety/agitation and/or aggressiveness and/or depression and/or dizzyness (and those are just the neruo-psych side effects), we have stopped that as of two days ago. He got most of the 30 days that are needed (at minimum) for EB.

 

We were going to also start a week of Tindamax followed by 21 days off then Flagyl for 7 days but his Herxheimer reaction was so strong (on Doxy alone) that we have put that on "hold" for a little while. I believe we will do this at the right time however (just not sure what the "right time" will look like).

 

How long does a Herxheimer reaction last? I think this Lyme must be pretty bad - not to mention the Bartonella. I have heard that Bartonella is really bad for the nervous system. Does anyone else on the forum have experience with this particular coinfection? I really appreciate all that I have already learned from both the PANDAS/PITAND and the Lyme Forums. Any new input would be "golden."

[cobbiemommy]

My son is also positive for Lyme and has Bartonella. We are waiting for the other coinfection tests to come back. My son is on the Bicillin LA shots at 2.4 million units once a week, as well as Zithromax. Bicillin LA also works on strep. (yeah) He also takes Diflucan, ProThera probiotics, and many supplements, especially magnesium.

 

Like you, we thought the red marks on his torso were stretch marks from a growth spurt. After HD IVIg, they became more numerous and bright red. Also, he developed a red rash all over his torso. After starting Flagyl, expect to see more rashes, especially the classic bullseye, and more mood swings. They were so bad that I kept my son home from school for several days.

 

The shots do work very well. One thing you might do is keep a journal of behaviors and improvements. We found that my son's behavior was very cyclical. About every 28 days, look out! This also coincides with the life cycle of the spirochete, so it could be that it is a reaction to the dying spirochete releasing toxins.

 

I am glad that they are not as bad as they once were. Hopefully, every month will be less and less!

 

Cobbie

[sf_mom]

My girlfriend who has LD (Bartonella as a co-infection) just started antibiotics three days ago. She was told she would feel rather ill almost immediately.. and she was sick as a dog for two days. She is feeling great today. Her regimen at 130 pounds is 2000 m.g Amox and 1000 m.g. Biaxin. Her LLMD was able to eradicate Bartonella from her son in 16 weeks and is now negative via Igenex and much improved.

 

I agree with Cobbie... document the cycles. We see a flair about every two weeks with my older son. It took about 9 weeks for things to really start settling down.

 

Plan for it to be a rough couple of months. Compassion is my new Montra and keeping them safe when raging. Thankfully, we only have one child who rages and he is only three... although, I did think he was going to break the shower door the other day.

 

Probiotics: Fantastic

 

Bicillin shots with other antibiotics: Fantastic

 

You might try a homeopathic anti-viral just to keep him well and still address EB. We use SyImmune.... our LLMD recommends it as well.

 

GFCF: Fantastic... You might inquire about a histamine reducer or consider nightly benadryl if he is not sleeping well. See my other posts

 

Starting out low and slow is perfectly fine when treating LYME. My friend's son will be treated for 6 months before they even consider starting cyst buster.

 

DETOX: 1/2 cup Bentonite Clay or Charcoal pills before bed.

 

I am looking forward to hearing reports of recovery!!!! CONGRATULATIONS again on figuring this out for him.

Edited October 27, 2010 by SF Mom

[philamom]

If taking Flagyl, be sure to NOT take Milk Thistle.

[philamom]

My daughter is also positive for Lyme, Bartonella, and Rocky Mountain Spotted Fever. She is currently taking 1000mg Amox and 250mg Zith daily and Tindamax on the weekends.

Good luck with the treatment!

[lyme_mom]

AS IF the "learning curve" weren't steep enough with PANDAS now we have newly diagnosed chronic neurologic Lyme! Also, one of the coinfections: Bartonella. (Two summers ago, we thought the "red stretch marks on his lower back/hip area" were caused by a growth spurt! I just feel sick about this when I think back...)

 

So, in addition to his three times daily dose of Augmentin XR 1,000 mg for PANDAS (he is 165lbs and now 3 months post PEX) we have begun three times daily Doxycycline 100mg. We started last Thursday and he had a significant Herxheimer (sp?) reaction. Increased red rash on face and neck, increased anxiety/agitation, the "red stretch marks" on his hips are now all over his pelvic region - back and front, increased involuntary movements, increased OCD (checking, trouble going through doors). Granted, the involuntary movements and OCD are no way near the levels he was at just prior to his plasmaphresis last July. BUT, any increase in these "PANDAS symptoms" are cause for aggressive intervention as that only gets worse to the point of no control.

 

Here is what I did: I called our PA (also a naturopath) who is treating the Lyme and told her I was very concerned about his response to the Doxycycline. She said it was most likely a sign that the Lyme was being treated but told us to come in for a Bicillin shot. She uses these to treat Lyme too. We are now 24 hours after the shot and he is 75% less anxious, with more relaxed body movements, and minimal OCD. The shot helped!! I am way too new at this to reliably articulate why this helped. But, we can get these shots once a month (even every week if needed) and I am glad to see that it is working. Then, yesterday, we (purely by chance) had an appointment with his PANDAS doctor. She is o.k. with the Augmentin/Doxy/Bicillin treatment plan. That helps.

 

What else should I be thinking about at this point in the treatment process?

 

We are treating high Candida levels with Difulcain, medical grade probiotics (VSL 3 DS), Theralac, and TruFiber.

 

We are treating his gut with the GFCF diet (based on food allergy testing). I am told this will help his immune system too.

 

He was started on Valtrex at the end of September for a high EB titer. However, as that can cause anxiety/agitation and/or aggressiveness and/or depression and/or dizzyness (and those are just the neruo-psych side effects), we have stopped that as of two days ago. He got most of the 30 days that are needed (at minimum) for EB.

 

We were going to also start a week of Tindamax followed by 21 days off then Flagyl for 7 days but his Herxheimer reaction was so strong (on Doxy alone) that we have put that on "hold" for a little while. I believe we will do this at the right time however (just not sure what the "right time" will look like).

 

How long does a Herxheimer reaction last? I think this Lyme must be pretty bad - not to mention the Bartonella. I have heard that Bartonella is really bad for the nervous system. Does anyone else on the forum have experience with this particular coinfection? I really appreciate all that I have already learned from both the PANDAS/PITAND and the Lyme Forums. Any new input would be "golden."

 

These stories are heartbreaking and I am so sorry to hear what you are going through. I get very irritated that this epidemic is not getting the attention it deserves as so many kids go deeper into their lyme illness without the proper treatment. Why isn't this being covered on national news? Why are most pediatricians clueless about the symptoms of lyme and how most lyme tests are worthless? It frustrates me and that is why I continue to post on this site. It really makes me happy to see the newly diagnosed "lyme moms" spreading the word to others on this forum about tick-borne infections. This may be the only way the word will get out, via word of mouth.

My son went undiagnosed for at least a year, possibly three years. He was very ill but after two years and three months of lyme/bartonella/babesia treatment he is off all antibiotics and doing well. It was one scary experience and I still worry that it could return but my optimism grows with each day he goes without lyme symptoms. You sound like you are doing a great job. A couple of points: yes bartonella causes very pronounced psychological/neurological symptoms (more so than lyme disease) and Dr. Jones told me that it can look just like PANDAS. I also heard that Babesia is notorious for psychological symptoms too by the way. All the infections can cause neurological symptoms but they suspect bartonella when the psychological symptoms are out of proportion to the other symptoms. If you just started treatment they probably don't want to introduce rifampin for bartonella yet. They usually start with one antibiotic or two and then build up to three within a month or two. How long has he been treated? Is your PA ilads trained? Rifampin is the drug of choice to treat bartonella as far as I know. At least that is what I have been told by our llmds. Rifampin helped my son get rid of his horrible headaches (another symptom of bartonella) and me to get rid of foot pain (another sign of bartonella). I think we took doxy, rifampin and azithro, although other combos are used too but always rifampin was used for bartonella.

Diflucan, the yeast medicine, is used to treat lyme b/c it is a cyst buster. My llmd put my son on it just to treat the lyme for a period of time.

My doctor also uses a homeopathic remedy to treat lyme and the coinfections. IT is called spiro and it kills lyme and coinfections. I think it caused my son to herx a lot.

 

Good luck to you-I am sure he will get better with the right treatment and you sound like you are covering all the bases.

[PacificMama]

Hi,

 

You've gotten lots of good advice here. The only thing I am wondering is how experienced is the PA who is treating your son? The best thing to do is get an appointment with an LLMD to oversee all of this. There are long wait times usually (see the post here for Finding A Doctor).

 

I'm not sure you would say Pandas AND lyme, as if he needed to be treated for 2 separate things by 2 different doctors. Essentially lyme and coinfections will cause the symptoms you know/knew to be PANDAS.

 

As Wendy said, going slow and steady is important -- especially with a child. You really want someone who knows how to approach multiple tick borne infections (in addition to the non-tick infections).

 

All the best... you are off to a good start. And no mother guilt allowed here! We are full up.

 

Mary

[MomofJacob]

Has anyone has a child who was diagnosed with autism, ocd, odd, tourette's, adhd, PANDAS and then Lyme...what about a child like this who was treated for lyme and they recovered from all of them...?? Gotta dream ya know - keeps me from goin' wacky! :-)

[philamom]

Has anyone has a child who was diagnosed with autism, ocd, odd, tourette's, adhd, PANDAS and then Lyme...what about a child like this who was treated for lyme and they recovered from all of them...?? Gotta dream ya know - keeps me from goin' wacky! :-)

Have you checked out the LIA Foundation (Lyme Induced Autism).

www.lymeinducedautism.com

www.LIAFoundation.org

[sf_mom]

You should head over to LYME induced Autism Website!!! You will find you are not alone. Our twins had/have spectrum issues at 2.... we got lucky and put them on antibiotics last year and things are reversing. http://www.lymeinducedautism.com/

 

Have you ever been diagnosed is CFS, MS, Fibro, Lupus or any odd auto-immune issues yourself? Any weird symptoms throughout your life that have been ignored due to the focus on your son/children?

 

-Wendy

Edited October 28, 2010 by SF Mom

[NancyD]

If you throw colitis into that list then that is (or was) my DD14. We have treated everything but the Lyme. PANDAS seems to be in remission and DD is no longer on the autism spectrum.

 

Has anyone has a child who was diagnosed with autism, ocd, odd, tourette's, adhd, PANDAS and then Lyme...what about a child like this who was treated for lyme and they recovered from all of them...?? Gotta dream ya know - keeps me from goin' wacky! :-)

[MomofJacob]

Can you tell me more - when did you know she had pandas/lyme? what treatment protocol did you use? what do you mean by 'not treating the lyme'? I am very anxious to hear from you! Thanks, karen

 

If you throw colitis into that list then that is (or was) my DD14. We have treated everything but the Lyme. PANDAS seems to be in remission and DD is no longer on the autism spectrum.

 

Has anyone has a child who was diagnosed with autism, ocd, odd, tourette's, adhd, PANDAS and then Lyme...what about a child like this who was treated for lyme and they recovered from all of them...?? Gotta dream ya know - keeps me from goin' wacky! :-)

[MomofJacob]

I was a dog groomer for years and came into contact with more tics (dead and alive - and their blood...eeewwww!!) than you can shake a 'tic at :-) I have a pituatary tumour but that's about it...

 

You should head over to LYME induced Autism Website!!! You will find you are not alone. Our twins had/have spectrum issues at 2.... we got lucky and put them on antibiotics last year and things are reversing. http://www.lymeinducedautism.com/

 

Have you ever been diagnosed is CFS, MS, Fibro, Lupus or any odd auto-immune issues yourself? Any weird symptoms throughout your life that have been ignored due to the focus on your son/children?

 

-Wendy

[philamom]

I was a dog groomer for years and came into contact with more tics (dead and alive - and their blood...eeewwww!!) than you can shake a 'tic at :-) I have a pituatary tumour but that's about it...

 

You should head over to LYME induced Autism Website!!! You will find you are not alone. Our twins had/have spectrum issues at 2.... we got lucky and put them on antibiotics last year and things are reversing. http://www.lymeinducedautism.com/

 

Have you ever been diagnosed is CFS, MS, Fibro, Lupus or any odd auto-immune issues yourself? Any weird symptoms throughout your life that have been ignored due to the focus on your son/children?

 

-Wendy

I also had a pituitary tumor. Were you told it would resolve on it's own?

[NancyD]

Karen,

 

My daughter's immune system was dysfunctional from an early age. Unbeknownst to me, she was allergic to her soy formula, which she started at 4 weeks and she had a variety of GI issues, which later led to severe colitis. She was developmentally delayed from the beginning -- no social reciprocity, no language, no play skills, no gestures, no eye contact. She had excessive hand flapping, she arched her back when I tried to pick her up, she did not respond to her name when called, she would not play any social games, and she was very underreactive to sensory input. She was diagnosed with mild to moderate PDD-NOS at 2 and began receiving EI services.

 

I can trace my daughter's PANDAS back to when she little although it was not diagnosed until she was 7. At 2.9 she had impetigo followed by an overnight onset of hyperactivity, temper tantrums, a tic, sleep problems, and more restricted/repetitive behaviors. She had a history of sinusitis. Dr. L thinks she might have had strep on her face as early as 6 weeks.

 

As far as treatments go...beginning at age 3, we did round-the-clock DIR/Floortime, speech/language therapy, OT/SI, social skills training, Tomatis listening therapy, GFCF diet (also no soy, dyes, or additives), and LOTS of supplements. She was enrolled in a fulltime out-of district program at age 3 (6 kids with ASD and 3 neuro-typical kids). By kindergarten she was mainstreamed in public school with a shared aide.

 

By age 7 tantrums turned into rages and they got violent. Once she was diagnosed with PANDAS she was put on penicillin and rages stopped within 48 hours. DD did monthly glutathione IVs for two years followed by chelation. Her gut was completely cleaned up by age 9 and for the first time in years she could tolerate eating gluten, dairy, and soy.

 

In preteen years she went downhill again. She was raging 2-3 times a day (up to 2 hours apiece). Tics were really bad. 5th grade was a disaster -- she was bullied and when school administrators handled it poorly she refused to go back to school. She spent 9 months at home with a tutor 2 hours a day while I got my ducks in a row, hired an attorney, and fought for an out-of-district program, which we won. We put her in a small, fabulous developmental-based school for kids with social-emotional issues. She had high anxiety and spent more time in her counselor's office than in the classroom. Her grades were terrible and it took her a while to settle in but she liked going to school. When she wasn't in school she was either figure skating or horseback riding.

 

We started HD IVIg when she was 12 and within 10 weeks the tics were ~70% gone, rages completely gone, sleeping in her own bed through the night for the first time in 10 years, and her grades went from Cs and Ds to all As. She also started making REAL FRIENDS for the first time. It was a great year. Conversely, her anxiety started getting worse and she developed OCD/scrupulocity. She went downhill last Nov and had a series of 2 or 3 severe exacerbations. She had severe rages, self mutilation, depression, and she threatened to kill me on several occasions. She was also getting one skin infection after another. By then she had only one minor tic left and thankfully they did not get worse. She did her last HD IVIg in March, in April we saw Dr. L and she switched her to Augmentin XR 1000 bid and put her on 50,000 IUs vitamin D for 5 months because she had catastrophically low D levels. DD was hospitalized for two weeks in May and she was given 30-day tapered prednisone. Exactly 6 weeks from when she had her last infusion her PANDAS went back into remission and has been doing great ever since. Even the last tic went away completely. I attribute it to combination of IVIg, Augmentin XR, vitamin D (prednisone may have also kicked her back in).

 

Still, anxiety and OCD continued to get worse and she had intermittant joint stiffness/pains. In Sept she started having brain fog, forgetfulness, balance problems, excessive hair loss, floppiness in her body, etc. SF Mom started urging me to get DD tested for Lyme through IGX and then I found out one of the horses DD rides had been diagnosed with LD earlier in the summer. Sure enough, her IGX test came out positive and her Myco P IgG levels came out very high. Bartonella and Babesia came back negative but we will have to retest it again later. DD started Zithro last week (in addition to Augmentin XR) and Sunday she starts Tindamax. Also have to put her back on Diflucan. We will hold off a bit before doing any more IVIg. I do not yet know if it was contracted recently or if it was congenital. I plan to be tested very soon.

 

DD turns 15 in March and although she's in 9th grade she's taking 10th grade classes. She loooves school, gets straight A, and has lots of friends. She loves to read, writes beautifully, and she is incredibly insightful. She lacks self confidence though and her anxiety/OCD can be crippling. I am SOOO HOPING that the anxiety and OCD will begin to diminish soon.

 

That's our story...probably more than you ever wanted to know! It's been a very long journey but I do see a light at the end of the tunnel!!

 

Today after horseback riding DD discovered a deer tic on her clothing. She freaked so much she wouldn't even touch it. Someone had to take it off her.

 

Nancy

 

Can you tell me more - when did you know she had pandas/lyme? what treatment protocol did you use? what do you mean by 'not treating the lyme'? I am very anxious to hear from you! Thanks, karen

 

If you throw colitis into that list then that is (or was) my DD14. We have treated everything but the Lyme. PANDAS seems to be in remission and DD is no longer on the autism spectrum.

 

Has anyone has a child who was diagnosed with autism, ocd, odd, tourette's, adhd, PANDAS and then Lyme...what about a child like this who was treated for lyme and they recovered from all of them...?? Gotta dream ya know - keeps me from goin' wacky! :-)

Edited October 30, 2010 by NancyD