switching to zith--afraid of herx?

[eljomom]

Just got back from another visit with Dr. L. Confident that my daughter is PANDAS and not TS. So we are switching to zithromax from augmentin (did 30 days on that without much improvement). Then after 30 days may do a steroid taper. She said zith. was originally created as an anti-inflammatory, but they found it also worked as an anti-bacterial. That being said, with my daughter's recent Lyme results being "negative" but suggestive of further studies, I am afraid that if there is an underlying Lyme, the zith. might cause a herx reaction. I really don't know what this is, but thought I read it somewhere, and I'm worried about it. ANy thoughts on this. We are having Igenix run the band 31 confirmation test, and then Dr. Harris (at Igenix) said if that's negative to move on.

[Suzan]

I just started zith for lyme last week. My LLMD said to take 1 pill and then wait 3-6 days for the herx. Once it passes, I work my way up to the full dose over the next week or two as I can handle it. Now this was after having taken cyst busters and other meds so maybe that makes a difference with the herx. I've taken zith before for other reasons with no trouble.

 

Also, my dd's took zith when we though it was "just" PANDAS and they did not herx when they started it. They actually showed improvement within days (at the right dosage).

 

Susan

[KeithandElizabeth]

I think it is a great idea to do the 31 epitope confirmation test for lyme.

 

My biggest piece of advice would be to hold off on any steroids in case your daughter does have lyme disease. Although the steroids may provide short term relief, they are suppressing the immune system which can let the lyme grow rapidly and thereby causing a longer term lyme issue.

 

I would not be afraid of the herx from the azithromycin because the herx in itself is evidence of lyme disease and shows that it is starting to kill off the bad bacterias.

 

Elizabeth

[Fixit]

is there such a test for band 39?

[eljomom]

Fixit---I don't know, but I would call Igenix (got number online) and ask to speak to Dr. Harris. You don't have to pitch a fit or anything to talk to him---I called a couple days ago--the main number--and just asked if someone could help me understand my daughters results. They put me through to his voicemail, and he called back later that day. Left another question the next day, and he left a reply on my answering machine.

 

is there such a test for band 39?

[sf_mom]

I know you spoke with Dr. Harris over the phone but I also need to add. The band 31 confirmatory testing can sometimes be falsely negative. I know that happened to one little boy and thankfully they hung in there with their LLMD and did additional testing through provocation and looked for co-infections through other speciality labs. After three months of appropriate antibiotics the Lyme results turned positive because they were properly killing off the BB and several co-infections were picked up through other specialty labs.

 

Again, since Lyme is the only kinda positive result you have I would strongly urge you to see an LLMD prior to making this decision on your own. PANDAS treatment has been helpful to some with Lyme but many tend to fail treatment eventually. I am only trying to save you the expense of more invasive treatment by getting proper evaluation/testing to absolutely rule out Lyme. I know it means a another Dr. and now that Dr. L thinks PANDAS its a tough call but you really need a second opinion. Dr. Jemsek/Dr. Beal's are located in DC close to Dr. L.

 

-Wendy

Edited December 16, 2010 by SF Mom

[philamom]

I agree with Wendy...it might be wise to seek another opinion from an LLMD. Also, check out this statement on the Igenex results: Presence of only one double starred band or INDETERMINATE double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks. The confirmatory 31kDa test doesn't address other bands.

 

Didn't you have a IND **83-93 band?

[eljomom]

Yes, the **83-93 was IND on one of them.

I am just weary of going the LLMD path and being "forced into" Lyme....it's heavy duty treatment, and I would want to be certain what we are dealing with. I know it's a "clinical diagnosis"- but what I don't understand it that the symptom list is so long, you could go in with anything and be called Lyme. My daughter has NO fatigue, aches, pains---JUST the mild ocd, major tics, hyper and sep. anx.

 

I agree with Wendy...it might be wise to seek another opinion from an LLMD. Also, check out this statement on the Igenex results: Presence of only one double starred band or INDETERMINATE double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks. The confirmatory 31kDa test doesn't address other bands.

 

Didn't you have a IND **83-93 band?

[philamom]

Yes, the **83-93 was IND on one of them.

I am just weary of going the LLMD path and being "forced into" Lyme....it's heavy duty treatment, and I would want to be certain what we are dealing with. I know it's a "clinical diagnosis"- but what I don't understand it that the symptom list is so long, you could go in with anything and be called Lyme. My daughter has NO fatigue, aches, pains---JUST the mild ocd, major tics, hyper and sep. anx.

 

I agree with Wendy...it might be wise to seek another opinion from an LLMD. Also, check out this statement on the Igenex results: Presence of only one double starred band or INDETERMINATE double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks. The confirmatory 31kDa test doesn't address other bands.

 

Didn't you have a IND **83-93 band?

Oh yes, I completely understand. In July, when we first received my dd9 Igenex results, I was not convinced she had lyme. We had a positive Western Blot IgM, and I still ran the 31kda band confirmatory test (which came back negative). She does not have any fatigue (more ADHD like), aches, and pains...just neuropsychiatric symptoms. Although, in the past she has complained of some on/off leg pains, but it went away, even before I started the lyme treatment. My daughter had severe seperation anxiety, even had to come with me when I showered. She would cry & scream when I left the house. When we saw an LLMD, he ran some other test (thru Quest & Specialty labs) and found tick-borne co-infections as well...Bartonella and Rocky Mountain Spotted Fever. I'm happy to say we are headed in the right direction now. We are no longer dealing with any Seperation Anxiety-- I'm even contemplating a weekend away this spring....something I couldn't have imagined in over 2 years. I wish you well!

[PacificMama]

I'd like to comment on this, because I do not understand where this idea comes from. No doctor "forces" anyone into a lyme diagnosis. Why would they do that? LLMD's are watched like a hawk by their state medical boards, and I can tell you that no doctor is going to offer a lyme diagnosis without good reason to think so. Yes, it's a clinical diagnosis (just like many diseases, including PANDAS). Yes, it can only be the neuropsych symptoms, without the other. Every individual is unique, and every disease presentation is unique.

 

The treatment is not heavy duty. It is most often abx, started in a slow and methodical way. The doctors quickly judge the next steps based on the reaction to abx -- maybe a herx (initial flaring of symptoms) followed by improvement. If you do not see improvedment, diagnoses are reasessed. No one is forced into anything. If advised, you could do a short trial of abx and see what you think. There's really no down side to that.

 

Mary

 

Yes, the **83-93 was IND on one of them.

I am just weary of going the LLMD path and being "forced into" Lyme....it's heavy duty treatment, and I would want to be certain what we are dealing with. I know it's a "clinical diagnosis"- but what I don't understand it that the symptom list is so long, you could go in with anything and be called Lyme. My daughter has NO fatigue, aches, pains---JUST the mild ocd, major tics, hyper and sep. anx.

[Suzan]

We are no longer dealing with any Seperation Anxiety-- I'm even contemplating a weekend away this spring....something I couldn't have imagined in over 2 years. I wish you well!

 

Yowza! This is great! I hope to be there soon.

 

Susan

[RNmom]

Hi Eljomom,

Please do not be frightened off by difficult treatment course such as the ones I am posting lately. If I had been able to identify my son's Lyme two years ago (we think he got it at summer camp) I am fairly certain the Lyme treatment course that he is going through now would be a lot simpler.

I do think that my ds14 has had PANDAS since early childhood. I think when he contracted Lyme (and we missed it) his body was no longer able to keep the PANDAS within manageable limits due to the added stress of the Lyme. (That is a longer discussion but we have always given him extra long courses of antibiotics for infections because we noticed he needed that to recover fully. He had neurologic tics that also went away after longer courses of antibiotics... that is a story for another time.) We got our ds14 treated by Dr. L for PANDAS which became catastrophic last January. He improved to @ 65% and then his recovery stalled. A month later we had a positive Lyme diagnosis. Treatment is harder because both Lyme and PANDAS went too long without adequate treatment - and reached a level of clinical severity that required aggressive therapies. Looking back, I think both PANDAS and Lyme symptoms would not have gotten so bad if we had been able to identify and treat the Lyme in its early stages. I hope this is helpful (I hope it makes sense)!

 

I wish you the best in your decision about how you go forward. At the end of the day we all learn to trust our own instincts.

 

Yes, the **83-93 was IND on one of them.

I am just weary of going the LLMD path and being "forced into" Lyme....it's heavy duty treatment, and I would want to be certain what we are dealing with. I know it's a "clinical diagnosis"- but what I don't understand it that the symptom list is so long, you could go in with anything and be called Lyme. My daughter has NO fatigue, aches, pains---JUST the mild ocd, major tics, hyper and sep. anx.

 

I agree with Wendy...it might be wise to seek another opinion from an LLMD. Also, check out this statement on the Igenex results: Presence of only one double starred band or INDETERMINATE double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks. The confirmatory 31kDa test doesn't address other bands.

 

Didn't you have a IND **83-93 band?