SD – seeking advice

[Eva]

Hi

[Maz]

@Eva wrote:

I’ve started researching the availability of clindamycin – it may be too expensive at this point for me. I’m not that keen on IV (this hard skin and all the pain I’ve been thru has made me a wimp), I’m wondering if oral clindamycin would be an ok alternative. I’m interested in NAC and AL-Acid after reading about them on this site. Besides the heart and lung worries, I’m feeling quite good. I still have a long way to go

[Eva]

Hi Maz,
Thanks for your reply – I kinda thought there would be a very valid reason for IV clinamycin instead of oral – darn it.
Yes, please forward me Dr. S’s contact – that would be wonderful.
Thanks
Eva

[cavalier]

I agree that oral Clindy is too rough on the GI. Everyone is a bit different it is worth a trial to see as to what they respond too with their SD – even though I have this – I hesitate to say this or that will always work as each case is a bit different in what we respond too especially if there are any co-infections. The more layers there is generally speaking the more agressive or more layers of help is needed – this is just my personal opinion but I am not a doc! It’s worth seeing what will give you a good response under someone like Dr S. for advice or more than one doc.

I would suggest if you can finding a nurse to give you a glutathione push this is important for the lungs, 2nd best is the suppository form of this. It also gives according to my nurse some help to the heart as well – as we age this level goes down & certainly with SD we need this form of antioxidant. I have used big amt’s of NAC for some time a few yr’s actually & milk thistle, while good for the liver in my case I needed much more than this for my lungs & heart both of which are hard hit by the disease, even though I have been on AP, SD is progressive. I seem to respond better to Mino or Clindy than I do to Zithromax – but none the less I dont ever feel this is enough for me but i also have Lyme as well so … Arming myself with the glutathione is important to me & helps me breathe easier & my lungs dont hurt as much. Again you maybe different than me, but it is worth in my opinion a trial of this to see how you respond. Keep in mind Dr Brown said once that AP is helpful for 80% of all SD cases – that means 20% it wont – better than the odds from other conventional med’s but one could be in the 20%. I have struggled & so I feel the more I can do to cover as much as I can, the better.

Can check with Infu Serve America if they will ship this to you – I dunno if that will work, as it does need to be overnited but they carry this & it’s reasonable with them. You can check around for other sources that maybe closer to you most require a doctors prescription for this. My strong feeling is the glutathione is often depleted with folks who have a Rheumatic/ autoimmune disease especially with age to us & I know some doctors share this even one Rheumatologist here feels this way. I just know there is a big difference for me between NAC & Glutathione it’s like the difference between a toy truck & a big diesel truck.
If you can do a trial for each one & compare which you respond too more.

Best – Jill SD, Lyme, CPn. Candida is on the wane.

[cavalier]

You can also check into using diluted food grade Hydrogen Peroxide, if you have a doctor who is versed in this. This is diluted in specific amt’s, it goes after the bacteria that may be present in your blood. You need to use probiotics like you do with AP. I am herxing like I have never herxed before using this. It is for a specific period of time to use this & then get retested to see where I am at. Then depending on what we see then we will regroup & decide if we need to go back to clindy again. For some of us we need to change out the form from time to time as sometimes we get resistance.

Again it’s feeling out your situation & seeing how you respond, when there is internal involvement it’s important to make sure you are seeing some improvement if you can if not be sure to tell the doctor & keep on them. Consider diet & anything that can help remove inflammation from the picture. For me I already have too much protein in my blood so i am not including whey yogurt etc like I used too, but this is based on factual information for me – we are all a bit different.
Jill

[Eva]

Thanks Jill,
I searched the availibility of glutathione here and it appears that my doctors health centre has recently added IV glut to their list of treatments so I will definately look into it – they would administer the Clindy too, but I’m unsure of their experience with it. It will be good to discuss with Dr S. about dosage (and dilution?) and frequency.

This SD is hard 😆 and having such a mixed bag of health issues – some getting better and others not that great, it is confusing. I am grateful to feel better than I did 8 months ago – I wish all my tests showed that.
Eva

[Maz]

@Eva wrote:

Thanks for your reply – I kinda thought there would be a very valid reason for IV clinamycin instead of oral – darn it.
Yes, please forward me Dr. S’s contact – that would be wonderful.

Eva, if you can’t get IV clindy, which is probably better than oral, it’s still possible to use oral, if the gut is up to it. Folks will do this if their docs are unwilling to try the IVs or they just can’t get access to them for some other reason.

Does Lynnie have your doc’s contact info in Australia? He sounds great and we’re always looking for docs to add to the referral list.

I will send you Dr. S’s contact info in a PM (private message). To retrieve your PM, just click up top beside your User Control Panel when you see (1 new message). 🙂 Dr. S. will consult directly with your doc by phone or email and will answer patient email queries, too.

I have IV glutathione pushes every week or two weeks and they are wonderful for inflammation and detoxification. I find it’s important to keep up glutathione levels in-between IV pushes, which is why I also use NAC and non-denatured whey protein. Seems these methods are helpful for those who need help with getting rid of the muck out of the body (NAC is actually used for aspirin overdose to detox liver and also for cystic fibrosis patients to help their lungs). While I was doing IV clindamycin rounds, my doc would insert my IV and do a Glutatione IV push and Myer’s Cocktail while I was in his office and then I’d do the clindy IVs at home. He trained me how to do this, but it helps if one has a friend or family member who is a nurse who can help out in the beginning. Some folks will have a home infusion service come and do it for various reasons, too.

Wishing you all the best with this, Eva! Please let us know how you get on.

[Eva]

Thanks Maz,
My pharmacist thinks IV Clindy is available here, and luckily I have been able to get Lederle mino in New Zealand. Is there a particular Clindy brand I should be using? Can Clindy be taken at anytime of the day or spaced away from the mino, is Clindy also taken away from food?
Next time I see my doc I’ll mention the AP doctors list to him.
best,
Eva

[lynnie_sydney]

Eva – gather you are in New Zealand rather than Australia.

Our list for doctors willing to prescribe AP in New Zealand is very limited indeed, so anyone who is willing to be added to it would be great. To reassure him, we never publish doctors’ names (RBF policy) and we could put some details after the listing about his approach.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Eva]

Hi Lynnie – I’ve now added my location to my profile – not that far from you 🙂
I did get an AP doctors list for NZ when I first found the Roadback, but decided to stay with the practice I know. It’s ideal as the consultants are GPs within a natural health centre that promotes ‘do no harm’.
The hospital rheumy wouldn’t prescribe antibiotics, only chemo based immune suppressants – which I’ve declined. I still feel deep in the woods and caught in a strange game of russian roulette – I appreciate access to hospital testing but the pressure to use their treatments is daunting.
best,
Eva

[Maz]

@Eva wrote:

My pharmacist thinks IV Clindy is available here, and luckily I have been able to get Lederle mino in New Zealand. Is there a particular Clindy brand I should be using? Can Clindy be taken at anytime of the day or spaced away from the mino, is Clindy also taken away from food?
Next time I see my doc I’ll mention the AP doctors list to him.

Hi Eva,

I’m not sure what brand/generics of clindy might be available in NZ, but perhaps Lynnie will have info on that to share with you, as she’s in Auz.

Oral clindamycin can be taken alongside tetracyclines quite safely as there aren’t any interactions and there is no need to also take it away from food unless you find it causes any nausea. You can look up info on all drugs and any possible interactions at the following website and here is a comprehensive guide on clindamycin:

http://www.drugs.com/clindamycin.html

http://www.drugs.com/interactions-check.php?drug_list=690-0,1636-0

When I was having my IVs of clindamycin, I also took my doxy on those days, but for those just beginning AP, they may be advised by their doctor to wait to start their mino or doxy until after the 5 day IV series is complete, because herxing, if it’s going to hit, usually comes in the week or so after the IVs. So, quite often the mino will be started after the IVs are completed and maybe a week or so after. This is on a case-by-case basis, though, and SDers, in general don’t herx (unless they have an inflammatory component to their rheumatic presentation) and often want to be a bit more aggressive in treatment.

That would be great if your doc is willing for RBF to add him to the referral list for others in NZ. As Lynnie mentioned, NZ is one place where it would be good if we could add a few more docs to the list.

[lynnie_sydney]

I’m not sure what brand/generics of clindy might be available in NZ, but perhaps Lynnie will have info on that to share with you, as she’s in Auz.

I’m afraid I don’t know that – primarily because I have had no experience with that particular drug.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Anonymous]

What is the best way to get glutathione in the system

[Maz]

@Moogle wrote:

What is the best way to get glutathione in the system

Hi Moogle,

It’s been really quiet around here for the last couple weeks, so thought I’d respond and maybe others will chime in with their experience.

As far as I know, the best route of administration for immediate effects is via IV push. My doc also recommended liposomal artemisinin capsules for in-between to keep glutatione levels up, but I didn’t find much benefit in the oral route, as it was quite an expensive supplement and not nearly as effective for me as the IV push, which I then decided to do on a weekly or two-weekly basis. I have read that weightlifters will do IV pushes daily, but these are expensive ($65 per IV push).

http://www.medaus.com/index.php?catid=4%3Aglutathione-discovery-center&id=36%3Aroute-of-administration-of-glutathione-is-critical&option=com_content&Itemid=25

There are other routes of administration, other than IV push or liposomal capsules, such as taking glutathione sub-lingually or rectally in a pessary form. For folks who can’t manage IV pushes of glutathione, these might be effective to varying degrees, but I have no personal experience of them, so can’t share much on this side of things. I think Jill (Cavalier) has used the rectal form of glutathione, so she may be able to share on this.

Alternatively, there are precursors to Gluathione that one can add to a daily protocol that include NAC (n-acetylcysteine) and non-denatured whey. NAC is a great supplement and I take 600mg BID with food as per my doctor’s instructions. I’ve also used non-denatured whey products, like Immunocal (pretty expensive, but liked it) and I now use ImmunoPro (a lot more affordable).

So, essentially, the best forms that I’ve personally used to boost glutathione in the body are the IV pushes (best), NAC and ImmunoPro (the latter two for daily maintenance).

You’ll find lots of info online by running some google searches using key words, like “Glutathione Routes of Administration.” Each person will probably have variable results with each method, so trying a few different forms may be helpful.

Does that help, at all?

[rebeccaavazian]

Hi Eva,
Ive had Sd for almost 7 years now. I started (about 6years ago with AP)with mino mwf and herxed badly over that first weekend and couldnt wait to take my mino on monday and felt better when i did. I told Dr. F and he put me on 100mg 2x aday everyday drom that point on and i gradually got better, then about six months passed and he started me on IV clindy (300,600,900mg) for one week off for 3 then start again) and things just continued to get even better. My skin tighness, rom, joint pain, sensitivity, fatigue all got better, then 4 years later i was that much better i got pregnant went off all my meds, pregnancy was amazing, but then after pregnancy my symptoms started to slowly come back so Dr.F started me back on mino and my symtpoms did not respond and stopped mino and he started me on Doxy and put me back on Clindy but pill form not Iv and I take clindy everyday 300mg 2x a day and it doesnt bother my tummy and it works! So i dont see why you cannot try clindy in pill form if the IV is too expensive or not available. but remember to take lots of probiotics. I hope this helps.

Keep positive.
xoxo Rebecca

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