Rifampin

[sf_mom]

Remember my kids are not biologically related and only carried in-utero by me, so you'll never convince me of a genetic predisposition. I am more likely to believe the infection came first and worked on their immune systems. Faternal boy/girl twins have almost identical labs and you can see how their RBC counts go down, IgG 1 and 3s drop and strep pneumo titers get worse over time and lymphocytes stay high and both have high CAM, low WBC count for both resolves after we started antibiotics. We ran labs on them at least 3 times over the course of last year prior to unraveling Lyme/Bartonella/Babesia.

 

I absolutely know the hdIVIG/antibiotics helped our older son..... BUT, we broke from antibiotic protocol from day one so it might have been the antibiotics but we will never know for sure. At that time, I intuitively knew he did better on 500 m.g. than 250 m.g. of Azithro per day. We went up and down on the dosage 4 times before we finally said we are holding at 500 m.g. Then when we added Omnicef to Azithro 5 months post his last hdIVIG we saw a rapid shedding of symptoms over the course of 30 days. At that point, I knew for sure it was the antibiotics that were helping and maybe perhaps some small residual benefits from IVIG. AND, now that we are over a year from last IVIG it is absolutely the right antibiotic/rotation that is pushing him to remission/recovery.

 

We were in a good place when we started Lyme treatment but you have to remember all our kids had this since day one. They are ALL much better since treating for chronic infection and not all have had IVIG treatments. My father-in-law who is a Dr. was little concerned when it went from PANDAS to Lyme but has seen the difference in our kids. He gets it and we are working on getting another family member tested as a result.

 

By the way, Dr. H does believe all the abnormal labs will turn around with treatment. I will know some of the CBC and subclass results next week. I am keeping the option of IVIG on the table but I don't think it will be necessary at this point in time for any of my kids.

 

We did not have any traditional symptoms of LD until we treated for LD. Mostly showed up as a herx response.

 

Hope that helps to recap a little.

 

-Wendy

Edited March 15, 2011 by SF Mom

[norcalmom]

I personally think there are several things that can cause pandas(PANS). Genetics, Exposures (lyme, vaccines, chronic infections), Immune Defieciencies.

 

Any of one of those things + strep = possible pandas.

 

Any of those 2 + strep = higher probability of pandas...

 

3 - you get the picture.

 

I think this is what Cunningham believes as well. In the preso that was taken down - she had a slide on what make a person suceptible. Basically says the same as above only she also has neurologic (family members with tics) as a risk factor. Its obviously all hypothesis. But, not everyone is fitting the original cookie cutter. I wish cunningham would publish some data on her lyme numbers.

 

It would be interesting to see if people with lyme, without the neurologic-psych (pandas) symptoms have hi cam K and anti-neruonals, or if it just those with the symptoms. ..as well as those with lyme and known step exposure, or those that only have lyme exposure and no known strep.

 

Also some of these (and other factors) could effect BBB - that is another contributing factor.

 

We haven't made any gains in our antibiotic swich (at least visible) yet. (its been about 6 weeks, 4 weeks Doryx, and a week or so zith/rifampin, and a week of very hi dose provocation that kicked everything off). I think I've seen a little herxing - but - its very difficult to tell - could be side effects, or just the fact that perhaps it doesn't work as well as the other drug. Perhaps we are making headway way with lyme, but the post strep autoimmune sequalae symptoms are too prominent to see any. Hes been pretty much the same pandas-wise.

 

Mood stinks - could be rifampin herx, but I see no resolution of other pandas stuff...he's flat line to slight decline since last virus.

[sf_mom]

Agree with everything you say!

 

I do think your son's mood could be a herx/bartonella and I know for some 'unfortunately' it takes a long time to see improvement. One little girl being treated for Lyme since June: TICS are finally settling, OCD and anxiety remitted in Jan. So, a good 7 months to see marked improvement. She had a couple ldIVIGs and 3 or 4 hdIVIGs last year for Pandas.

 

Hang in there...

 

-Wendy

[sf_mom]

We are two days into rotation with Rifampin for our younger son and he is absolutely coming unglued..... crying, kicking, biting.

 

He is on Sufamate/Azithro/Rifampin. We've been treating for Babesia since Oct. and now focused on treating the Bartonella since the anxiety/restlessness/pacing/nail biting (all fairly new symptoms except nail biting) has picked up. It is not fun..... these Herx's can be rough. I'll definitely post when things improve.

 

-Wendy

Edited March 30, 2011 by SF Mom

[lismom]

We are two days into rotation with Rifampin for our younger son and he is absolutely coming unglued..... crying, kicking, biting.

 

He is on Sufamate/Azithro/Rifampin. We've been treating for Babesia since Oct. and now focused on treating the Bartonella since the anxiety/restlessness/pacing/nail biting (all fairly new symptoms except nail biting) has picked up. All I can say.... its not fun and these Herx's can be rough.

 

Oh my gosh. We are 2 weeks into rifampin and son's symptoms are the worst ever. He's in so much pain. I'm not sure whether we don't have his monthly flare on top of herxing. It went from 0 to 60mph. I'm barely holding it together.

[sf_mom]

I don't blame you... remember if its too much you can always stop or cut back on dose. For now, we are hanging in there but if its too much I'll be calling the Dr. Advil seems to help a little.

 

It will be interesting to know if you eventually unravel Bartonella for your son.

 

-Wendy

[lismom]

I don't blame you... remember if its too much you can always stop or cut back on dose. For now, we are hanging in there but if its too much I'll be calling the Dr. Advil seems to help a little.

 

It will be interesting to know if you eventually unravel Bartonella for your son.

 

-Wendy

 

Yes, I think we will definitely get a positive on the Bart. The purplish stretch marks have come out full view on lower back. Kathy

[sf_mom]

Geez... Make sure you take a photo of the rash before it disappears.

[lismom]

Geez... Make sure you take a photo of the rash before it disappears.

 

I did. I took some with my phone to bring. But she won't have any problem seeing that tommorrow. It kind of confirms everything for me if you know what I mean. Kathy

Edited March 30, 2011 by lismom

[justinekno]

Our dr runs a metabolic profile every month to keep an eye on the liver.

 

 

Thanks Dawn! How often do you test your son't liver (is there a recommendation on what and when to test for?) My son's been on azith for over a year, and now we are adding this, so I think maybe we are due? No one has every said anything to use about doing this - but have read it (on here as well as in drug warning labels)

[Santi]

I don't blame you... remember if its too much you can always stop or cut back on dose. For now, we are hanging in there but if its too much I'll be calling the Dr. Advil seems to help a little.

 

It will be interesting to know if you eventually unravel Bartonella for your son.

 

-Wendy

 

Yes, I think we will definitely get a positive on the Bart. The purplish stretch marks have come out full view on lower back. Kathy

 

Do these marks tend to come out after starting treatment? Andrea

[lismom]

yes, the marks exploded after we started treatment. Rifampin has made all the difference for us with improvement on the worst symptoms my son had. It took a good 4 months and I expect quite a few more. kathy

[Santi]

Glad to hear that things are going well at this point for your child. What dose of Rifampin did you use? We have 450mg. Andrea

[lismom]

Glad to hear that things are going well at this point for your child. What dose of Rifampin did you use? We have 450mg. Andrea

 

We're on 600mg. My son is 14.

[cobbiemommy]

We just added Rifampin back into son's treatment about three days ago, after being off it for 6 weeks. He is taking Bactrim DS twice a day, Tindamax three times a day and now Rifampin and Cholestyramine each day. He is sort of coming unglued as well. He is so crabby, irritable and tired. We also started slit therapy for allergies nine days ago and cholestyramine for mold and lyme toxins.

 

Sometimes, I think God puts these posts at the top for me to read. This is the first one I came to and the one that directly relates to what we are going through at the moment. Thank you for sharing your struggles and successes just when I needed it most!

 

Cobbie