How Good is Oral Clindy

[Wayne]

Greetings from the land down under, Hi all,

Due to the continuing (it is slowing) progression of my SD, I have a feeling that we are due to ramp up treatment and oral Clindy will be an option that my Dr D and I will discuss when we meet again soon. I realise that IV Clindy is a much better option and I do hope to try to get IV organised maybe every 3 or 4 months, but in between that, the oral route will be a good option.

Any suggestions on how much is the usual dose and has the oral route caused anyone any major problems? I know that probiotics will be essential and maybe guys are less likely to have problems than gals?

I would love to hear a little from those of you who have tried it :).

Thanks Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Maz]

[user=1894]Wayne[/user] wrote:

Due to the continuing (it is slowing) progression of my SD, I have a feeling that we are due to ramp up treatment and oral Clindy will be an option that my Dr D and I will discuss when we meet again soon. I realise that IV Clindy is a much better option and I do hope to try to get IV organised maybe every 3 or 4 months, but in between that, the oral route will be a good option.

Any suggestions on how much is the usual dose and has the oral route caused anyone any major problems? I know that probiotics will be essential and maybe guys are less likely to have problems than gals?

 

Hi Wayne,

Glad to hear you're going to ramp up your treatment! Sounds like Dr D wanted to ensure your gut was in good shape first, which is a good thing, but it's good to hear you're onto this and will be hitting your sclero a little more aggressively soon. 🙂

Every AP doc will have their own MO with the oral clindy thing, just as they do with IVs and their frequency. Here is a link that explains Dr F's (on most experienced list here in US, in CA) approach to oral clindy – see FAQ #2:

http://www.rheumatic.org/faq.htm

“Various modifications to the late Dr. Brown's original antibiotic protocol regarding the use of IV clindamycin have been made by some physicians currently treating rheumatoid patients today. Some physicians have reported success using clindamycin orally, or in intramuscular injections. Orally, the single dose is 1200 mg. once a week. For intramuscular injections, 300 mg to 600 mg. once a week.”

While there is a similar risk of candida for men and women in the gut (but manifesting differently), with clindamycin, there is a greater risk of clostridium difficile for both genders, too, which causes very severe, painful, bloody diarrhea. Oral clindy can be very hard on the gut, so you're wise to ramp up your probiotic intake while on it and even in-between doses, if spaced as Dr F suggests above.  

http://en.wikipedia.org/wiki/Clindamycin

“The most severe common adverse effect of clindamycin is Clostridium difficile-associated diarrhea (the most frequent cause of pseudomembranous colitis). Although this side-effect occurs with almost all antibiotics, including beta-lactam antibiotics, it is classically linked to clindamycin use.”

If you can ultimately get the IVs to bypass your gut a bit more, you'll be better off, as oral clindy can do a number on the gut and strip it of its delicate microbiota balance.

Hope this helps, Wayne?

Peace, Maz

 

[nspiker]

Hi Wayne,

I couldn't take oral clindy, but do fine on IV.  If you can “stomach” the oral, it is a great solution!  Some have no problems orally, and you may be one of the lucky ones.  I knew clindy worked for me because when I did take it orally for a few days, there was definite improvement.  Ultimately, my stomach couldn't handle it orally, but I did not have c-difficile. 

You'll know right away if you will have problems.  Just take probiotics, and you could try pepto bismol to line you gut.  That was helpful for me. 

nancy

[Kim]

Wayne,

I'm taking it now for Lyme tx along with 3 other abx simultaneously and am tolerating it, but barely.  No doubt, it is hard on your gut.

Take care…..kim

[Margaret Mueller]

Hi Maz, Kim and everyone,

Just met with my PCP regarding PICC lines.  She was reluctantly agreeing to it for what she thought was a single four-day run, but given the really lousy state of my veins and how quickly I clot, she was not enthusiastic about signing for it.  She is genuinely concerned that I will have immediate clotting problems in my shoulders, have permanent problems and be on coumadin (spelling?) forever.

Then, I pointed out to her that the order was for seven days on/three weeks off for six rounds, a total of twenty -odd weeks of PICC line and she said she wouldn't be willing to be the signing physician because she foresees too many problems for me.  It would mean repeated PICC lines, likely MSRA, and clotting for me.  A port would be just as risky she feels for me.

So, we talked about other options for clindy.  This post is timely for me.  I didn't tolerate the oral (capsules) well the first time, but I wondering if I just had too much sugar and not enough probiotic in my system. I am thinking of asking if I can try it again in lieu of IV clindy.  Are the odds against me?  I am also open to intramuscular clindy.  She thinks my veins will sclero up too much too quickly for regular IVs to be practical.  Are there other forms of clindy I can try? 

The thing is, I am so healthy, that I hate to permanently ruin what is working by approaching this the wrong way.

[Kim]

Margaret,

I have to admit I'm relieved that your doctor wasn't comfortable with the procedure, it just seems like setting yourself up for a multitude of things that could go wrong.  I find if I space out my oral Clindys and drink extra water I can tolerate larger doses, plus I use the sauna so I don't take full doses anyway. 😉

Take care…..kim

[Lynne G.SD]

Hi Wayne;
     I never had a problem with oral Clindy even at 1200mg a day but I guess I have a cast iron stomack.My doctor told me to take it with a meal as long as there were no foods high in calcium.I also had I.V.s but found no difference between them.
                          Lynne

[Margaret Mueller]

Thanks Kim,

That Sauna is on the buying list.  I'm curious, do lyme docs feel that the sauna heat in some way is forcing or drawing out the bacteria from our bodies and making the process of getting rid of the pests more efficient.  This occurred to me the other night while I was reading and I started wondering what others using the saunas think the benefits, besides feeling really good afterwards, is.

M

[PhilC]

This info may be helpful: Clindamycin – IM, IV

Phil

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

[BrendanG]

Hi wayne

I am on 900mg oral clindy weekly and have tolerated it very well with any gut problems over the past 8 months. I also are taking 200 per day mino.

I notice the day after the clindy I feel great and rather give me the shits it improves bowel movement for a few days.

I am still on methotrexate as my rhuemy is confident it can modify the progression of sd. I will give this another 12 months maybe 18.

If you can – get off the cortisone – it does increase risk if kidney involvement in early diffuse sd

hang in there Wayne and get on the mino if you can. 12 months ago I was at about where you appear to be and I reckon I have slowed the disease to the point where I can see a lot of light sat the end of the tunnell

I

[Kim]

[user=1323]Margaret Mueller[/user] wrote:

Thanks Kim,

That Sauna is on the buying list.  I'm curious, do lyme docs feel that the sauna heat in some way is forcing or drawing out the bacteria from our bodies and making the process of getting rid of the pests more efficient.  This occurred to me the other night while I was reading and I started wondering what others using the saunas think the benefits, besides feeling really good afterwards, is.

M

My LLMD reminded me that your body naturally creates a fever to fight infection which is what the sauna is doing.  The bugs do NOT like it!  He also said one reason we're all hypo-thyroid is the bugs love a cooler body temperature.  I just know I can take smaller doses of abx and still get results, and honestly, for people with SD it should be mandatory. :roll-laugh:  Maz's LLMD recommended she buy one, which she recently did.  You can go to lymenet.org and poll all the people there using saunas and you'll get a thumbs-up.

Take care…..kim

[Wayne]

Thanks everyone for your replies on a very relevant important subject.

It seems as if there may be quite a few ways of doing Clindy as long as it works for the individual. It so helpful to know how you guys are using clindy, as it helps broaden my knowledge and application of the drug before my meeting with Dr D. I'm still currently doing 300mg IM per week. 

Good to hear from you Brendan. Its quite amazing that the clindy dose can vary so much, say from 900mg per week oral to 1200 mg a day! Huge difference. You sure have a cast iron stomach Lynne. When I did a IV Clindy run of 600mg per day for 10 days, I got terrible diarrhoea and a sore bum. 

Thanks heaps Maz. So much info there.  It will take me a little while to research the links and learn more.

Hang in there Kim on the Clindy and I hope it works out well for you :). How much do you take?

Still down here in Esperance on a holiday, due home on Sat :(.

Thanks heaps for your valuable input – so much appreciated,

Cheers Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Maz]

[user=1323]Margaret Mueller[/user] wrote:

I'm curious, do lyme docs feel that the sauna heat in some way is forcing or drawing out the bacteria from our bodies and making the process of getting rid of the pests more efficient.  This occurred to me the other night while I was reading and I started wondering what others using the saunas think the benefits, besides feeling really good afterwards, is.

Hi Margaret,

Yes, as Kim said, my LLMD encouraged me strongly to get an infrared sauna. I just found this site on Lyme and infrared sauna use, but you should be able to find lots more by googling the key words, “Infrared sauna Lyme disease.”

http://www.lknmedicalspa.com/blog/?tag=sauna

“In addition to accelerating detoxification, saunas provide numerous other benefits due to increased body temperature. From Nenah Sylver (as well as Lawrence Wilson, M.D., author of Sauna Therapy, another valuable sauna book), we know that saunas have the following benefits:

Immune system stimulation and activation

Direct antibacterial action

Balancing of the autonomic nervous system

Improving oxygenation

Relieving internal congestion

Relaxing muscles and enhancing flexibility of tendons and ligaments

Alkalizing the body

Increasing circulation

Resolving edema

Normalizing enzymatic activity

Relieving pain

Increasing energy and clearing the mind

Normalizing body temperature

Below, we will examine specific types of sauna therapy, and then we will look at another type of detoxification treatment involving the skin: the Epsom salt bath.

(more?)“

 

Peace, Maz

[Lynne G.SD]

Maz,Kimmie;
     I'm just wondering if sweating from good old fashioned hard work.Got any opinions????One thing I know for sure is that mowing the lawn for 3 hours leaves me soaking wey as does crawling under the tables in the greenhouse with a whisk broom.Doing all four rows of 100 feet is an all day job that I really try to postpone as often as possible.  hehehe. Since I am the only one that fits there no one else will help.

[Maz]

[user=31]Lynne G./SD[/user] wrote:

     I'm just wondering if sweating from good old fashioned hard work.Got any opinions????

 

Hi Lynne,

Just my thoughts on this…sweating is good any way you can do it, as it's releasing toxins via sweat….a good thing! 🙂 

Sweating via infrared sauna has its benefits, because the heat is penetrating deep into the tissues and the Lyme bugs don't like heat. As Kim said, sauna induces a febrile state, which is the body's natural way of killing pathogens.

Lyme can't survive in oxygenated tissues and so exercise is good, too, because it's moving lymph (the lymphatic system does not have its own pump like the heart for the circulatory system, so relies on movement to move around the body and out).

However, while moderate working out is good, if a person can manage it, Burrascano advises against excessive aerobic exercise, because it depreses T-cell function too much. Also, it's just common sense that the body is trying to heal and stored energy is needed for tissue restoration. See Burrascano's guidelines at link below (page 31). So moderate, intermittant exercise for Lymies is a good thing if it can be managed…just not to overdo it:

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

Don't think that moderate exercise can really be a replacement for infrared sauna, especially for folk who are unable to manage moderate exercise regimens when they are too fatigued and in too much pain. Bascially, if you can't move, then you can't exercise anyway…so infrared sauna is like getting a good cardio-vascular work-out without having to move painful joints and muscles and helps to relieve pain, remove toxins and lower inflammation all at the same time….again, if not overdone. I used my sauna every day the first week, loving it, but then herxed like the dickens by the 7th day. When I mentioned this to my Lyme doc, he recommended not to use my sauna more than every other day at a max of 125f for 30 mins.  The only way I've sweated to this degree was when I worked out in boot camp with a trainer and after 45 mins it was like I'd been thrown in a lake! I can't work up as much of a sweat yet just by exercise alone…so I'd have to say sauna, for me, at this point is still more effective than exercise in releasing toxins…though I also try to do at least half an hour of some form of exercise per day…walking, recumbant cycling or light free weights.  

Peace, Maz

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