Started Tindamax...stiff neck

[kmom]

Last week, the kids and I were told it's time to cystbust. CVS had to order the meds. They came in yesterday. I started my first dose yesterday. I haven't noticed much other than a bad stiff neck I woke up with...herxing or just coincidence???

 

I was told to pulse Tindamax for me. 1 pill 2x/day--1 week on, 1 week off. The kids have 2 docs. Dr. J says only 2 days/wk. Dr. B in MD says 1 weeks on, 1 week off (same as me). I am torn. For the most part the docs agree w/ all other meds and dosing. I was planning to do the Dr. J method. He said start on Sat. and if no herxing, give med Sun. If herxing does happen on Sat. then no Tindamax Sun. and wait till next weekend and try again. Repeat till no herxing on Sat. That feels more logical and livable but maybe Dr. B's method is better. Any experience and thoughts? I want to nail these bugs but really enjoy life w/o a ton of herxing and ups and downs. Life is more normal than it's been since this whole mess started and hate stirring it up. But if that gets the job done in the end, I'm willing to do whatever!

[philamom]

kmom- my daughter takes the Tindamax Sat & Sun. We usually see some herxing on Sunday/Monday (sometimes minor symptoms Saturday evening). Good luck with your decision!

[LNN]

I don't have experience with tindamax. Our LLMD puts cyst busting lower on his "to-do" list. But I'm struggling with the same decision re: aggressive vs. gentle for my dd6 who was just dx'd last week w/bartonella. She responded dramatically when we started zith 5 weeks ago for sudden-onset OCD. A week into treatment, she exacerbated w/sinus infection. Started omnicef and w/in 24 hrs life was good again. After we stopped omnicef, stayed on zith and it's been all goodness since. (yesterday got Cunnigham results back - CamK 178 and anti-lysogangliosides off the chart). So is it Pandas? Bartonella? Both?

 

If I lived only in the Pandas zip code, I'd be really happy with just zith. But LLMD has offered to add bactrim, as this would be the more appropriate treatment for bartonella. We left the office on just zith, feeling like we didn't need to rock the boat right now. Allergy season is coming and I'm wondering what the spike in histamines will do (dd has horrible allergies - gets weekly shots). On one hand, you just want to enjoy the break. On the other hand, you don't want to make it harder to get rid of things down the road.

 

I think for dd, I'm going to be more aggressive and add the bactrim - in the hopes lowering her bacterial load might help with allergies when they peak in May. For DS8, who is also bartonella/lyme/Pandas, we will keep things slow and steady until school testing is done (statewide tests in March, school assessment testing for report cards in May). Then I will push for aggressive treatment over the summer when they're generally healthier and behavioral issues can be better managed. For him, his road has been harder and brain fog has been huge, so he deserves the chance to do testing with a clearer head. We can stir the pot and ruin his summer instead!

 

I think sometimes I get stuck in either/or thinking. Maybe you can try the weekend approach for a month and then re-assess. In that time, you'll have your own treatment experiences that can be part of your decision making for your kids.

[sf_mom]

Our Dr. has a little different take on cyst busting. It is a non stop protocol... we are using Alinia and have been since September with the kids. Eventually, they may pulse like they are doing for me which is now 3 weeks on and 3 weeks off Tindamax.

 

-Wendy

[sf_mom]

So glad you are unraveling this for your daughter. As you may know Elizabeth's daughter had a identical CaM Kinase. She was not treated for PANDAS and they are having great success with Lyme treatment only.

 

I also wanted to add.

 

Dr. Ann Corson talks about treatment resistance of those that were mistreated for chronic infection previous to proper diagnoses. It was explained to me like this... Bartonella (or other co-infections) is intercellular. Azithro does NOT attack from both sides, inner cell/outer cell wall. You are only getting at the low hanging fruit with single use antibiotic. Only the strong survive and infection roots in. I'd say go after Bartonella aggressively and later determine if there are residual PANDAS. BUT, I'll also add our Dr. believes cure the infection and you'll cure auto-immune i.e. PAND.

 

-Wendy

[kmom]

Thanks for the input! Interesting how each LLMD has their own approach.

 

Strangely enough, after posting this thread, I was talking to a mom from the forum on the phone and while talking I could feel it was harder to catch my breath. Then I went upstairs for something and by the time I came back down, I had trouble sounding normal from my belabored breathing. I felt like this days before starting treatment. The stiff neck could be coincidental but the breathing definitely feels likes herxing b/c I've been back to tennis 1x/wk, pilates and walking on treadmill here and there since Jan. 7th and have done quite fine w/ aerobic activity...talking and climbing the stairs is way less aerobic than the previous activities!

 

@LLM My daughter had a Cam Kinase of 184 back in summer when we were only focusing on PANDAS. My son's was lower end of positive @ 137. Dr. J told us last week that the Cam K only tells us some bacteria is causing symptoms...could be strep, Borrelia, Bartonella, mycoplasma, etc. and that it just means there's a need for the 2nd part of test--the anti-nueronal antibodies. He said if any of the 4 are positive it means an auto immune response happening. I too really struggled last fall when we got the Lyme Dx. "Is PANDAS really a subset of Lyme?!" We had been chasing the right abx for PANDAS since last May (when neuropsych stuff started but really since Jan when the chronic strep throat hit) and now we're realizing it was Lyme...Lyme and PANDAS??? Lyme Induced PANDAS??? Is PANDAS what immunologists and neurologists who don't subscribe to Chronic Lyme like to dx it as??? I was so confused. Then some wise/experienced parents (SF Mom being one of them) on the forum suggested I focus on Lyme Tx and revisit PANDAS in the end if needed. Dr. Beals had the exact same sentiments. He said to hold off on IVIg till after Lyme Tx b/c he felt it would be a moot point. Dr. J said he's seen kids have great success w/ IVIg and Lyme Tx if they tested positive for any of the 4 anti-neuronal antibodies and he's seen weekly IVIg's have more success than those who do it every 8 wks or 3-4 months. Weekly IVIg! I couldn't imagine! But he also felt holding back from IVIg was a good option if that's what we decided to do. He didn't force one option or the other. He also felt at the end of Lyme Tx, PANDAS wouldn't be an issue. We'll never know till we get to that point but here's to hoping! Dr. J also told us that Lyme bands 31 and 34 are linked to auto immune responses and maybe Lyme is the cause of the autoimmunity and not that PANDAS came first. Bottom line, no one knows for sure. Only thing we can bank on is how kids are responding to treatments and I know life is MUCH more enjoyable in my house w/ the Lyme mix of abx than trying just one abx on PANDAS Tx. And even when we were still focusing on PANDAS from Aug. to mid Nov. and the kids were on a combo of Azith and Augmentin, we were seeing symptoms ramp up badly every 30 days or so which screamed Lyme to me and made us investigate more.

 

As far as going after Bartonella, Dr. J and Beals go for strep, Borrelia and Bartonella simultaneously so my kids' combo is Azith, Augmentin and Rifampin (and a monthly Bicillan shot that we're still on the fence about! Only did once.)and those 3 oral abx's combined made a huge difference. Tindamax is being introduced now in month #3 of Lyme Tx per Dr. Beals...not sure if Dr. J would have advised Tindamax earlier b/c we had to wait till last week to finally see him. But I do remember him saying some docs focus on co-infections first then Borrelia and some say attack the Borrelia and then co-infections but he says you go for Borrelia and co-infections simultaneously. So as far as adding Bactim to your DD's Tx, I'd say it's worth a try. I always tell our LLMDs, "As long as you prepare me for the worst, anything better that we see is a gift!" So maybe you'll see a herx but then greatness beyond what you thought was good now! Good luck!

[Suzan]

We are taking flagyl for cyst busting. Our LLMD started us on 2pills, 2days but only once a month and I have moved to 2 pills, 2 days a week. My dd9 is still on 2 pills, 2 days once a month. My dd8 is on 2 pills, 1 day every 1st and 3rd sunday. It's crazy to keep track of!

 

We all get stiff necks from herxing too.

 

Susan