Oral Clindy when unable to get the IVs

[Randy]

Hi Sunny,

When my insurance company (so considerate!!!!) stopped me from continuing the Clindy IV’s, Dr. F. Rx’ed me

300mg oral Clindamycin twice daily

. Triple your probiotics!

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[sunny22]

Wow Randy! I can’t believe they stopped covering the IV’s. I started with Dr. F from Riverside. Are you taking this new protocol for they Clindy everyday with no breaks?Have you been on it long enough to know if it has been as effective as the IV’s? I know it can be brutal on the gut. Would your insurance cover IM’s instead of the oral? I am going to ask my doctor about doing that to bypass the stomach as I have no problem injecting myself. Thanks for letting me know Dr. F’s protocol. I am starting to wonder if I should go back to Mino for a month, temporarily (even though I get DILE from it), drop the Zithro for a month, just so I can get some CLINDAMYCIN in me, then go back on Zith with no Clindy for a month, then do this cyle every other month. What a tangled mess to figure this out! Thanks again. Sunny

[sunny22]

Phil, thanks for the info on Zithro dosage.
Sunny

[Randy]

Hi Sunny,

It’s all a long story. But I guess that’s good because it says that SD has not won.

I was off Clindy IV’s, but doing oral Clindy for about about 3 months until my changed new insurance kicked in. I have not looked into doing Zithro for diffuse SD / me; however, 200mg twice daily with Doxy did NOT work for me and it has taken way too long to get (less than) back to where I was before switching from Doxy to Mino. But that is another story altogether.

I have been doing Clindy IV’s for a very very long time; I’m not aware of anyone who has been doing them longer than me…. Having said that, at this point, I’m not convinced how necessary they continue to be for me. However, if I just stop them to see how I do without them, then there is a very good likelihood that if I need to restart them that I may not win the expected insurance battle.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[PhilC]

Hi Randy,

Randy wrote:

I have been doing Clindy IV’s for a very very long time; I’m not aware of anyone who has been doing them longer than me…. Having said that, at this point, I’m not convinced how necessary they continue to be for me.

That being the case, perhaps it’s time to try something different. There are other antibiotics that you could take with minocycline other than clindamycin. You mentioned one of them — azithromycin.

Randy wrote:

However, if I just stop them to see how I do without them, then there is a very good likelihood that if I need to restart them that I may not win the expected insurance battle.

I understand your concern. Do you think it would be an issue if you stopped the clindy IVs for a month or so while you tried something else? Also, another option to consider is to add a third antibiotic that is compatible with both minocycline and clindamycin. That way, there would be no need to discontinue the clindy IVs.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[sunny22]

Randy,
I hope you are doing well.Have you stopped the Clindy? Sending positive thoughts.
Sunny

[Calida]

Hi Sunny!

A bit late to the convo but I wanted to share my experience with oral clindy.

Our Dr. M. prescribed azithromycin in April 2014, added mino in Nov 2014, and threw in a course of oral clindy in July 2015. My regimen that July was as follows:

Azithromycin: 250 mg 1 tablet BID every day
Minocycline: 100 mg 1 cap BID every day
Clindamycin HCL: 300 mg 2 capsules orally every 8 hours, 14 days.

I was still in the heat of the battle but my body tolerated the triple combo. As LynneG said, oral clindy is hard on the stomach and it helps to take it with food. Dr. M. added extra, pulsed doses of TruFlora probiotics to my standard Theralac and PB8 and I was fine, no sign of C-diff. Adding the oral clindy really knocked some difficult symptoms right out of my body so I feel confident saying Dr. M has a high level of expertise using this triple combo.

A touch of irony regarding Lyme, CT. My children’s 5th great grandparents were Joseph and Caroline Sterling Lord of Lyme, mid to late 1700’s. In 1709, the Sterling family founded the town of Old Lyme CT, originally Sterling City, and all of their children were born on Lord Hill. Both families were of the earliest settlers of Lyme and set up the original dams and mills on the Lt River and local waterways. It’s crossed my mind more than once – okay, probably a thousand times with every pain, symptom, Herx and battle – that there’s some serious Karma going on in my case! They messed with nature and changed the balance. Probably killed off all the local tick-eating opossums or violated ancient ground or something like that. The sins of the father may have been visited upon the in-law (me) but I’m praying there’s some sort of direct line immunity for my children.

Sunny, were you able to add the oral clindy and, if so, how are you feeling?

Best always,
Kelly

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

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