Tetracyclines?

[peglem]

Sept. 1st, my daughter tested + for strep again (while on prophylactic zith). She was prescribed a higher dose of zith-500mg for 5 days and was instructed to go back to prophylactic dose for 5 days after that, with the provision to call back if she was not better in a few days and Keflex would be added to the zith. Well, things seemed to be improving while she was on the 500mg dose, but on the 4th day of the 250 dose- the bed wetting anad sleep issues came back. (I do have a call in to the doc, waiting to hear back). We have used many different kinds of abx unsuccessfully, and now that it looks like maybe the zith isn't cutting it, I'm exploring options.

 

Has anybody had success with either minocycline or doxycycline? I know Swedo has completed a trial of minocycline in regressive autism (subjects had to show evidence of inflammation in CNS fluid), but the report hasn't been published yet. We haven't tried tetracyclines for treatment yet, but haven't seen much success with anything but zith thus far.

[thereishope]

I don't have experience w/ tertracyclines and PANDAS, but I do have personal medical problems with those meds. Specifically neurological. When I took long term tertacycline, I found out I had pseudotumorcerebi. Pretty much the tetracycline caused my optic nerves to swell up causing blurred vision, migraines, etc and it looked like I had a brain tumor, but I didn't. I have since found out that I have that same sensitivity to high doses of Vitamin A.

[peglem]

Wow! Thanks, Vicki. That's useful information to have. Is that an allergic reaction or a side effect? Or do they even know?

[thereishope]

I think it's a side effect. However, when I had my kids, the hospital catagorized it as an allergic reaction for the wristband.

 

It is rare for this to happen. The profile for it is obese women in their 30's. Well, I was 18, 5'9" tall, and weighed 115 lbs. So, definitely not the profile. Now, many people do go on long term tertracycline and have no problems at all. It is common to get that prescribed for moderate and severe acne from a dermatologist. However, because of an existing neurological issue, it is definitely something to keep in the back of your mind if you decide to go that route. It did not happen suddenly but after being on them for a month or so.

[anne]

I also have no info regarding Minocycline and Pandas, but took it myself for 10 months for Rosacea. I had tingling and muscle spasms in my legs after a while, thought I was getting MS. Had tests and they were negative. Then came down sick with severe joint pain in my fingers, ankles, wrists, knees, etc. I was so bad I could hardly move. I went to the doctor and when they ran blood work they said I had Hepatitis! I was shocked. Started to google for info and came up with several hits for a side effect for Minocycline. I found out I had drug induced lupus and Hepatitis. I went off of the Minocycline right away, my liver healed quickly, but the joint pain is still with me. My rheumatologist said he has a few patients with this from the Minocycline, sometimes it goes away after the medication is not taken, sometimes it doesn't. I unfortunately have not had mine go away. I take Prednisone, Placquinal and Methotrexate to keep it controlled. It has been a nightmare actually. If I had known what could happen I never, ever would have taken it. If it were me, I would definitely only use this medication as a last resort.

[Kayanne]

Sept. 1st, my daughter tested + for strep again (while on prophylactic zith). She was prescribed a higher dose of zith-500mg for 5 days and was instructed to go back to prophylactic dose for 5 days after that, with the provision to call back if she was not better in a few days and Keflex would be added to the zith. Well, things seemed to be improving while she was on the 500mg dose, but on the 4th day of the 250 dose- the bed wetting anad sleep issues came back. (I do have a call in to the doc, waiting to hear back). We have used many different kinds of abx unsuccessfully, and now that it looks like maybe the zith isn't cutting it, I'm exploring options.

 

Has anybody had success with either minocycline or doxycycline? I know Swedo has completed a trial of minocycline in regressive autism (subjects had to show evidence of inflammation in CNS fluid), but the report hasn't been published yet. We haven't tried tetracyclines for treatment yet, but haven't seen much success with anything but zith thus far.

 

Has your daughter ever had IVIG, PEX or taken steroids?

[peglem]

Sept. 1st, my daughter tested + for strep again (while on prophylactic zith). She was prescribed a higher dose of zith-500mg for 5 days and was instructed to go back to prophylactic dose for 5 days after that, with the provision to call back if she was not better in a few days and Keflex would be added to the zith. Well, things seemed to be improving while she was on the 500mg dose, but on the 4th day of the 250 dose- the bed wetting anad sleep issues came back. (I do have a call in to the doc, waiting to hear back). We have used many different kinds of abx unsuccessfully, and now that it looks like maybe the zith isn't cutting it, I'm exploring options.

 

Has anybody had success with either minocycline or doxycycline? I know Swedo has completed a trial of minocycline in regressive autism (subjects had to show evidence of inflammation in CNS fluid), but the report hasn't been published yet. We haven't tried tetracyclines for treatment yet, but haven't seen much success with anything but zith thus far.

 

Has your daughter ever had IVIG, PEX or taken steroids?

No, she has not.