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What dose did you take last night?
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHI
Have you made an appointment at Penn -Being from New York –I am not getting good vibes —I hope I am wrong but its almost as if there is an effort to entrap people here to give direct medical advice —60 years ago I was taught –“Believe nothing that you read and half what you see ” -This motto certainly did me well through the years .I think it may apply in this situation ,Yes, apt is next month. But let me tell you something richi, I think you live in bubble, thinking that going to university doc will somehow give me the best treatment. Wrong, I’ve been to one of the best urologist at temple and this guy is the best in prostatitis and IC. When I saw him he completely ignore fact of testing and culturing. He simply stated he has no experience with arthritis and he doesn’t think it’s anything related and you can’t culture most bug. Since I have previously taken cipro,doxy, flagyl I wouldn’t have anything. Period.
This is one of the leading research urologist at temple.
In 2years I have seen 10 urologist, 3 id, 2 gp, 1 neuro, 2 rehumi.
None of them had a clue how to even go close to treating this thing except current id willing to try combo if I gave him good reason.
The entire medial society is messed up there is no inter communication.
You tell me know why I’m not so optimistic. I know how the app at Penn Will go.
Hell take all my symptoms and say oh well you have arthritis and u need to get on immune suprrssive drugs. Same I hear from last 20 physician I have seen.
So just to let you know I have spend thousands of dollars in test and meds, yet nothing
Doc will look at your blood and if it’s clean then YOUR crazy not them got being lazy and doing research.
World, what does of LDN are you taking?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousSorry, what dose?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousDo you take 1.5 every day? Any help?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousYes, Richie, it’s a compounded capsule or tablet custom made in doses, usually 3.0mg-4.5mg, by specialty pharmacies. In its original formula it was a non-compounded full strength naltrexone pill (50 or 60mg, can’t remember the exact dose) used to treat opiate and alcohol addiction. Due to regulations regarding the original naltrexone, the homeopathic dose still falls in the prescription med category.
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
Supplements1 mg was too much for me, so I am going to order 0.5 mg.
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousHi I dont know what is going on –but something really is smelly —as I understand it –LDN is ordered through a compounding pharmacist -yet it appears within one day World gets this med -takes 1mg then 1.5 mg the next night -thats two different dose levels within 24 hours –Sorry -while I could be wrong -either there is a sinister motive or the help required is not from one of these specialities –Hope I am wrong but I am really thinking my vibes are right —
richieI want to explain the paradoxal effects of LDN as my MD – who has many years prescribing LDN for rheumatic patients – explained it to me.
At full strength, naltrexone’s effects increase as the dose increases. In homeopathic doses, naltrexone’s effects reverse and “less is more”. In other words, the effects become STRONGER as the dose is LOWERED. This is why the most experienced doctors usually start their patients with an average dose of about 3 mg.
If patients start fooling around with doses and, in their ignorance, lower their dose believing less medicine is safer, they may have an exacerbation of disease symptoms. Going from .5 and slowly increasing the dose over time is actually DECREASING the potency of naltrexone.
My husband’s Graves symptoms resurfaced after he was prescribed 4 mg of LDN. After consulting with our doctor, we INCREASED the dose to 2 mg and my husband has been in complete remission since that time, 2.5 years ago.
This is why I always recommend following doctor’s orders. If your doctor prescribes 3 mg of LDN, please don’t start messing around with the dose believing you know better than an experienced physician unless you are one yourself.
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
SupplementsHi Calida
Love your contributions here!One thing that I’m confused about with the above post is this:
My husband’s Graves symptoms resurfaced after he was prescribed 4 mg of LDN. After consulting with our doctor, we INCREASED the dose to 2 mg and my husband has been in complete remission since that time, 2.5 years ago.
I may be reading this wrongly but, if he was originally on 4mg, did you mean DECREASED the dose to 2mg?
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)
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