Clendomyicin/Rifampin Combo ~ What to expect now?

[kleek3]

So its been quite some time since I have last posted. We have continued the struggle with trying to find a remission if you will. Brief history, ds 5 was dx in October 2012 with PANDAS. We continue to see Dr. T. DS 4 has been on Zithromaz since October 2012. We have tried adding Cefdinir, we have tried a 30 day steroid burst. We have taken away yogurt and monitored our Gluten intake. We have never seen a "doing well for anything longer than 2 weeks in Feburary this year. Strep was the initial onset of the whole journey although Myco P is what the battle seems to be right now.

After returning from seeing Dr T on the 01JUN13. We got home to DS6 having a 103.4 fever and a respiratory virus that he then passed to DS 5 (PANDAS). We added a Cefdinir again just to give the 10 days a shot bc it worked in Feburary. After that failed and I reached out to Dr. T saying whats next. Dr. T wrote him for the Clendomyicin/Rifampin combo.

We spent the day with a close girlfriend of mine who 2 days later was dx Strep Positive on a rapid. DS5 was in a complete flare. Ah ha! I have directly seen it with my own two eyes now. I certainly know what "reacting" to a Strep is now. We started the Clendomyicin and today is day 7. After a COMPLETE meltdown yesterday and a crying phone call to Dr. T we started the Rifampin with the Clendo yesterday. I was going to ask him for an extension of the Clendomyicin bc after the initial exposure, DS5 was then exposed a second time WHILE on the CLendo to her second daughter and STILL continued to react.

I wasn't sure do we extend Clendo for a total of 30 days or just start the Rifampin. We made the decison with the Doctor to begin the combo. Today will be day 2 of Clendo/Rifampin and my questions are these:

1) When, if on day 7 of this journey have you all seen a change with this combo or med?

2) Does anybody have a positive experience with this combo?

3) How do I give Probiotic with this combo?

DS5 is STRUGGLING! He has become increasingly violent. When I returned from work last night I learned he cracked the neighbors kid, in the head, with a hockey stick. His tics are all still there. The emotional liability and impulse control seem to be the hardest to deal with. I find myself crying and sometimes unable to be around him because he is so challenging. That statement - right there breaks my heart. Please share if you have thoughts about our situation.

Might I add, he has NEVER cleared the Myco P. Hiss Igg Igm continue to drop, the last appt with Dr. T, he said we dont need to panic...but we need to figure out the Myco P before he ends up in a bubble. With all that being said. Thoughts please...

KK

[rowingmom]

Rifampin is used by LLMDs, in combination with other abx, to treat bartonella infections. Our main combination was biaxin (clarithromycin) and rifampin. To that tindamax was eventually added.

 

Emotional lability - raging, decreased tolerance for frustration - can both be symptoms of bartonella infection. Our LLMD believed that bartonella was causing DD's PANS symptoms, and they have decreased to almost zero after 2 years of treatment for lyme/bartonella. DD's herx (die-off) reactions generally happened within 2-3 days of changing/increasing protocols (1 day with tindamax). Her first was the worst, taking almost a month to recover from. The following were shorter and usually resolved within 7-10 days.

 

If you haven't tested for bartonella, I would suggest that you might.

Edited July 4, 2013 by rowingmom

[kleek3]

rowingmom,

 

If bartonella is the Lyme lab test, we have done that twice and both times negative. We are on day 3 of Clendo/Rifampin combo and now major change as of yet. I would say he may be a little bit less "buggy" if you will. Maybe it was just the course of events yesterday. We shall see what today brings. Thanks for you words and thoughts.

 

KK

[smartyjones]

kleek -- i'm so sorry to add this to your mix when you are struggling with so much -- for us, viruses were a big issue. we did not treat extensively with abx after initial treatment so I have nothing to add about what you ask with that.

 

just our story. . . ds had clear strep issues, 100% remission when he got on the right abx, but it didn't last. we went on to find multiple infections. took a long time -- perhaps 12 mths before we could get off strep remedy - each time we tried we had symptoms. multiple virus issues seems to cause problems. i'd say our treatment time -- we were lucky to find pandas fairly early -- about 2-3 months for diagnosis; then 2-4 months for abx, remission, backslide; then 9 months random searching; then 12-18 months to stabilize. i'm estimating, so likely my math doesn't add up -- but I now say he was sick for about 2.5-3 years -- ages 4.5 to about 7. during age 7, second grade, he had two major exacerbations that lasted about 6-8 weeks. for us, the healing path has been a long, hard road.

 

the good news -- he just completed 3rd grade (his first completed year of school since preschool at 3 years old) with each semester of As and Bs; his teachers understand and like him and celebrate how far he's come this year; he was successful on his baseball team (didn't finish the year last year); he plays 'okay' in the neighborhood of all older kids; he has 4 friends from school (new school this year -- I would have been happy with 1); he went to camp last week with brother and 2 family friends that he was thinking he was too afraid to do and although there were some social bumps, did quite well. he has fabulous problem solving skills although often needs to be reminded to use them.

 

the silver linings (watched it last night) are there -- just hard fought and would not ever have been of our choosing. although both my kids have struggled, they have skills and understandings well beyond their years that they don't even realize. (still makes me cry just to write those sentences)

 

-- this is just a *&^&$ of an illness and can be difficult to unravel. for many of us, we see multiple practitioners with various focuses, at the same time. for you and your family -- you need coping strategies that go beyond what a normal mom that has it together possesses. last year, during exacerbation, our psych suggested we devise a very tight "pen" (figuratively) to allow him to operate in with tight boundaries. we used dcmom's time out strategy that was also helpful. I love the explosive child strategies from dr greene -- not so much to change ds's behavior but to give me strategies to hold my sanity in interacting with him.

 

Good luck!!

Edited July 8, 2013 by smartyjones

[LNN]

Bartonella is a separate test. If you did a standard lab test for lyme, you did not test for bartonella. Also, relying on a standard lab to test for lyme is not very reliable. Standard labs follow CDC guidelines which tell them to NOT test for certain antibodies that are very specific markers for lyme. Here's a good explanation:

 

"In 1994 the CDC established a national surveillance criteria for Lyme disease. A national standard for reporting a positive DIAGNOSTIC result has never been developed. Most labs erroneously only report results based on these CDC criteria. The CDC criteria was developed concurrently with the Lyme vaccine. Certain key bands were omitted in the CDC test because these bands would react in persons who had received the Lyme vaccine. For a variety or reasons, the vaccine was removed from the market. Unfortunately, some key bands were never added back to the most commonly used Lyme Western Blot tests.

Of 28 possible bands, the standard CDC test, which is not a diagnostic test, reports only 13 out of a possible 28 bands. Only 3 IgM bands are reported and only 10 IgG bands are reported. The test is called positive if 2/3 IgM bands react or if 5/10 IgG bands react. Unfortunately, the CDC has recently made the test even more restrictive. If a patient has a positive IgM response it must be followed by a positive IgG response after 4 weeks to be considered a positive result.
Again, it must be emphasized that this is a surveillance test- a research tool- it cannot be claimed to be a accurate test for proving exposure to Lyme disease."

http://lymemd.blogspot.com/2009/02/understanding-western-blot.html

 

Under the pinned threads at the top of the forum are links to more detailed explanations of western blot tests and I highly recommend them. Dr T continues to rely on standard western blots which frustrates me to no end. If you cannot sustain a remission for more than 2 weeks and you're seeing an increase in symptoms from adding a second abx, then you really need to pursue lyme and bartonella testing thru Igenex labs, which looks for more specific markers than other labs. Given labs that are positive for mycoplasma, I don't think your current combo is effective against myco http://jac.oxfordjournals.org/content/40/5/622 and http://jama.jamanetwork.com/article.aspx?articleid=354251 But as RowingMom said, rifampin is sometimes used - always in combo with a second abx - for bartonella and lyme.

 

The aggression and loss of impulse control you describe sound like my son when he was herxing from lyme treatment. Motrin helps take the edge off. I agree with RowingMom - if it were me, I'd dig deeper into lyme and bartonella and consider seeing an LLMD (lyme literate MD). Dr T is not the guy for lyme. Right now, you might be thinking that all his contact with strep is behind the flare. It may be part of the story. But the lack of remission since last year suggests a chronic infection that is still triggering symptoms.

 

(btw - look up rifampin for dosing instructions. It works best taken on an empty stomach and should be taken away from certain supplements) And yes, you should absolutely be giving probiotics whenever using antibiotics. Probiotics need to be taken at least 2 hrs away from antibiotics. We dosed abx at dinner (rifampin was an hour before dinner if practical) and gave probiotics at bedtime so they could sit in the gut when stomach acids were lowers and they had a better chance to populate the intestines.

[rowingmom]

Thanks LLM. You are so good at putting words to paper! Just what I would have said (if I had my act together like you do) .

 

When we started out, our pediatric psychologist suggested PANDAS because DD was having considerable strep-associated flares. The first strep treatment resolved all of her issues (rages, ticcing, other PANDAS symptoms - urinary frequency, loss of handwriting/spatial abilities etc.). They then returned when the abx was discontinued. After the second strep infection, the abx (penicillin v) only worked for about 5 days, and then symptoms started creeping back. Whether this was the beginning of a herx reaction, or whether she had developed resistance to the antibiotic, I don't really know. After that the prescription ran out and we were back at square one.

 

Because we are Canadian and there is no PANDAS treatment to be found here - and the treatments (ie IVIG, PEX) really put it out of our reach financially - I figured a LLMD was our next best option. We travel to upstate NY to see ours.

 

Tests for the coinfections are indeed seperate from the Lyme test, and our LLMD ran several of them. DD was positive for Bartonella hensalae (there are many bartonella species), negative for babesia microti, ehrlichia, and anaplasma. She was IND - indeterminate or low level of reactivity for the lyme specific band IgG 39 kDa. The LLMD felt that she did not react strongly with this band because lyme and the coinfections can severely reduce the functioning of the immune system (ie low IgG, IgM reactions). Because the 39kDa is lyme specific, lyme had to have been present at some point.

 

So we ended up treating mostly for bartonella, and didn't concentrate too much on lyme.

 

DD saw her most pronounced improvement with the addition of malarone (which is used to treat babesia). Babesia tested negative, but perhaps another protozoan infection was involved - it's not feasible to test for every possible bacteria/virus out there. That's where LLMD's come in handy. They are familiar with treating using clinical symptoms and don't just rely on test results. They are not averse to a little experimentation and I am truly greatful for that.

 

The LLMD wanted to give malarone a trial because DD was still not holding onto her improvements after 1.5 years of treatment for lyme/bartonella, and felt another infection could be involved. We have never tested for toxoplasmosis, although because it's another infection associated with cats (and DD has a huge affinity for them - kissing them on the mouth etc.) it is certainly a possibility. 6 months after the addition of malarone we were able to successfully wean DD from abx. We are continuing herbal protocols for lyme/bartonella because her bartonella titers are still positive.

 

As for probiotic usage, we dosed abx before breakfast, probiotics before lunch, abx before dinner, and probiotics just before bed. We were using approximately 150 billion cultures/day of multistrain probiotics and had no problems, even while using combinations of up to 4 different antibiotics at the same time. I know that sounds drastic, but we have our daughter back. Now we just have to keep her here.

Edited July 4, 2013 by rowingmom

[Hopeny]

I have to second what everyone else has said. My niece has been treated for years (dr S in Brooklyn, numerous paychiatrists) with ticcing, rages, severe OCD etc. I have been suspicious of Lyme, the great instigator, because she can't get well. We finally had her tested through dr b at stonybrook lab and she showed reactivity to a Lyme specific band. When I discussed some other symptoms of bartonella with my sil, foot pain, eye problems, she confirmed them. Bartonella is very hard to detect in the blood and in conjunction with other markers should be considered in regards to clusters of symptoms. It's upsetting to hear doctors who are not experienced with Lyme/co infections to declare that a child does not have Lyme despite not getting well. It has taken my daughter 15 months of treatment for Lyme and we are still not there. The major what I consider strep symptoms, resolved much more rapidly and her aso is now normal. I am not suggesting that every unresolved case is lyme/bartonella, but other causes are worth evaluating if symptoms are unrelenting, by someone who is experienced and trained. Rifampin has worked well for my dd but not overnight. While we have cut down our team at this stage, I found that working with a team of varying specialties was critical in getting to the last mile. They all complemented each other and were able to bring different things to the table, each was mission critical. It may be an approach to consider. I really hope things improve speedily!

[beeskneesmommy]

We are just finishing the combo with our 6 year old. We had 14 days Rifampin (1 x D) and 30 days Clindo (3 x D). The Rifampin has been completed and the Clindo has another 5 days to go. After a couple of days of the combo, DS did very well - almost completely asymptomatic. When the Rifampin droppped off and it was only Clindo, he had some more difficulty and some symptoms returned. I need to add that throughout, he has also had 1 dose of Azith. This combo is tough on the stomach, but we are used to that. I would give the Clindo and Rifampin, right after one another in the AM, then the Clindo in the early afternoon, then the Azith 1 hour later, and then 2 hours later probiotic, then clindo at bed time. Got to keep aneye on the clock and look sharp! I missed the probiotic on more than 1 occasion

[Motherof2]

Rowingmom,

I'm sending you a personal message.

Motherof2

[kleek3]

Ladies,

 

I thank you so much for your input. I too agree that becausr he has NEVER cleared a Myco P lab test there IS something else. Dr. T doesn't deny that there is something. We just can't figure out what that something is. It has been 12 days since the Clendo/ Rifampin combo and we notice little or no change at all. Its so discouraging. We did the genetic testing thru Dr. T checking the mitochondria. I believe this is to see if there is a genitic factor to the PANDAS. We tested both children.

 

I think I need to push for a Lyme pannel. We are getting a new a/c, whole house air purifier and checking for mold. The ducts will be cleand AFTER so that the new air purifier can catch anything the duct cleaners don't get. We have been Doctoring with T since October. At this point, I believe he will move toward IVIg. I am tired. I'm sick of searching and don't want to watch him suffer in the same breath. I feel like a crazed mom in search for an answer and when each attempt results with the same issues and behaviors....it is frustrating to say the least. The throat clearing had disappeared for weeks.

 

The last week he has been on a constant clear. It has to be exhausting for him. Bed time or nap time is a NIGHTMARE. He winds up like a top and then it's as if a tranquilizer dart hits him and he is out cold. I'm concerned our sitter is going to dump us because of his behaviors. She can handle most anything except the aggression/violence. Then I think about school restarting. We COMPLETELY notice the Viral side of this PANDAS. He is like a magnet for anything and everything. Thanks for the vent and I will keep you posted where we go from here.

 

KK