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Hey everyone…
It’s been a while since i’ve posted, I’m sliding backwards yet again on AP- this is the 2nd time this has happened in a year. I do really well for about 2-3 months… then I start going backwards. Went to see a different AP doctor today that heavily pushes the use of IVs… I’m not against IV treatment, but this doctor is almost 2 hours away from me and wanted me to come in everyday for two weeks to get IVs… I have a full time job and NO time to take off until December of this year- he wasn’t very sympathetic to my situation and told me to go home and “pray about it”. I wan’t very thrilled. He barely addressed the fact that I had slid backwards twice in the past, saying it could possibly be a “co-infection”, yet didn’t offer to do any labs! All in all the vistit did not go well in my opinion. I might go back in December if I’m in really bad shape, but for now I just cannot take that kind of time off work. NO work, no money.. and no money, I can’t pay for my treatments! I’ll glady be going back to my original AP doctor if need be, although at this point I feel like I’m in this alone.
Regardless, this doctor did take some mercey on me and highly recommended I try LDN starting off at the lowest dose of 1.5. I’m very torn about this- from what I”ve read people either do really well, or sometimes they get worse. Since I’m already feeling like crap I’m slightly reluctant to try it, so I’d be interested in feedback from anyone who’s a “patient expert”, haha.
PS- got an appointment with an infectious disease doctor to be tested for LYME and other co-infections, but I can’t get in until October of this year.
Take a look at some of my posts in regard to LDN – for me I get more sick without LDN & I am more tired so I need this for sure as I have tried to go off once on purpose to see if it was really helping & another time I ran out for 4 days I don’t want to do that again.
I posted recently some info from expert doc’s one of which says it’s a old fallacy about having to take it at nite I get more help yet since I tried taking it in the daytime for fighting fatigue.
I never started off slowly but I have SD & Lyme & I have more internal involvement & it was progressing so I felt no time to take small steps all it did was give me increased help with very bad circulation at the time & it is what helped my raynaulds & still does immensely putting that a thing of the past with no flareups since I have been on LDN for the raynauds that is. Holding ground has been a issue for me & yes coinfections along with heavy metals have all been issues.
Jilloh don’t hate me but IV’s are always better utilized IF we can do them & yep they are DIFFICULT TO do for sure! no doubt & costly & time consuming. At least he is trying by offering LDN if you think on it I think he heard you somewhat – just he knows the above. Maybe there could be another form of IV used does he do Vit C IV’s & would that be something appropriate for what you have in his opinion or Ozone IV’s? Sometimes doing IV’s there can be more than one type & some of those can be just 2 days a week but I dunno if that could work any better or not & those can be done in about under a hr. would a flexible lunch hr work ever for you? -Just thinking outloud.
Jill
No no… There’s no “hating” here… 🙂
He was just came off very condescending to me, and his office offers absolutely no fleibility what so ever. I’m not against IVs, but at the same time there’s absolutely no way I can take a half day off work for the next two weeks! I just don’t have the vacation time, and if I do that I won’t have a job! Believe me, nothing is more important than good health, but he needs to offer a plan B to the working adult. Even if I could work with an in home nurse close to my home- that would be something I could work with… I need some kind of flexibility- and if he can’t offer that then I guess he’s not the right doctor for me. I just felt like he was more concerned with pushing his $1,500 package than my well being.
As for the LDN… thanks for your feedback. For me I’m going to do the slow ramp up and see how everything goes….
As we discussed previously, I think you should consider switching to doxycycline to see if you’re able to handle it better. As for the IVs, how will you be able to handle daily IVs when you’re having difficulty dealing with a low dose of minocycline? Did you forget what happened after the root canal that you had last fall?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI take 4.5 mg LDN every night and it is an enormous pain reliever for me. I’ve missed a dose 2-3 times and my pain level is significantly worse – within half an hour of taking the missed dose, my pain goes back to it’s normal, not great, but more tolerable level. If I herxed when I started on it (I went from 1.5 to 3.0 to 4.5mg within three weeks) then I am not aware of it as I also started plaquenil at the same time (not taking now) and I know I herxed on this (sharp burning pain in left hip within half an hour after each dose). LDN is helpful on many levels and I don’t think you’d be worse off for giving it a try.
Incidentally, EXTREME dizziness has been a major ongoing symptom in my disease process. Right now I’m four weeks out from my last major period of dizziness (longest stretch of time since before Christmas). I’m pretty sure dizziness in my case is a sign of candida die off and perhaps Lyme and other bacterias. Chelation (EDTA), no sugar/grain diet + lots of coconut products, and salt/C (I’m not yet ready to endorse this as I’ve only just started a few months back, though it appears to be working for me) have been very helpful. If you are off mino for now, I would suggest (just my layperson opinion) continuing on probiotics (saccharomyces boulardii is especially helpful) as well as diet modification and broad spectrum supplements effective against both candida and bacteria (colostrum, monolaurin, curcumin, mps, lactoferrin, colloidal silver etc. etc.).
Another thing that triggers dizziness like no other in me is dairy. I cannot lick a spoon with milk on it without feeling like the world is spinning all around me almost immediately. Digestive enzymes do help me flare less/digest my food better when eating.
I think one way to gauge if heavy metals are at play is to get some organic cilantro and eat several leaves and see how you feel afterwards. Cilantro is a natural chelator and I cannot eat it in large quantity without MAJOR herxing, as it breaks up biofilm as it pulls out metals.
Also, do you take epsom salt baths? Magnesium internally and externally really provides me some relief.
I hope you feel back on track soon!
Laura
Hi Woods, I just started LDN about three months ago. I was initally chicken to try it because I was afraid of a big herx. I started at 2 mg. and am now holding steady at 3mg. No herx or bad reactions. I’m not necessarily interested in a higher dosage. Labs taken last month show decreased inflammation levels which is encouraging but I am also on cortef and bio-identical hormones, which contribute greatly. I now am off NSAIDS completely. I’m going to try again a low dose of mino or doxy as I am hypersentive with high doses which really ramped my inflammation in the past. One thing I noticed about LDN is that, for me, it is a mood enhancer, I am more calm and more happy, coping better. So, I think you’ve got nothing to lose, and potentially alot to gain. I think you’re smart to start off low dose. Please keep us posted on how you’re doing. Take Care, Lizz
LDN also helped to lower inflammation for me as well as it was the only thing I had done differently. anything that can help contribute to that is a good thing. I don’t know if it does this for everyone or not so I d/n mention it.
best – Jill
Hi,
I plan on starting the LDN this weekend, have heard so many good things through the years, that have to give it a try. I have spoken to Dr Skip the pharmacist and he gave me a good plan on dosing. Hoping for the best.
John
Hi John,
@JohnnyMax wrote:I plan on starting the LDN this weekend, have heard so many good things through the years, that have to give it a try. I have spoken to Dr Skip the pharmacist and he gave me a good plan on dosing.
What did he suggest?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein@PhilC wrote:
As we discussed previously, I think you should consider switching to doxycycline to see if you’re able to handle it better. As for the IVs, how will you be able to handle daily IVs when you’re having difficulty dealing with a low dose of minocycline? Did you forget what happened after the root canal that you had last fall?
Phil
Phil.. I hear you loud and clear- believe me. Again I’m so torn… I don’t know what the hell I’m doing or which way is up or down right now.
@laurawm wrote:
I take 4.5 mg LDN every night and it is an enormous pain reliever for me. I’ve missed a dose 2-3 times and my pain level is significantly worse – within half an hour of taking the missed dose, my pain goes back to it’s normal, not great, but more tolerable level. If I herxed when I started on it (I went from 1.5 to 3.0 to 4.5mg within three weeks) then I am not aware of it as I also started plaquenil at the same time (not taking now) and I know I herxed on this (sharp burning pain in left hip within half an hour after each dose). LDN is helpful on many levels and I don’t think you’d be worse off for giving it a try.
Incidentally, EXTREME dizziness has been a major ongoing symptom in my disease process. Right now I’m four weeks out from my last major period of dizziness (longest stretch of time since before Christmas). I’m pretty sure dizziness in my case is a sign of candida die off and perhaps Lyme and other bacterias. Chelation (EDTA), no sugar/grain diet + lots of coconut products, and salt/C (I’m not yet ready to endorse this as I’ve only just started a few months back, though it appears to be working for me) have been very helpful. If you are off mino for now, I would suggest (just my layperson opinion) continuing on probiotics (saccharomyces boulardii is especially helpful) as well as diet modification and broad spectrum supplements effective against both candida and bacteria (colostrum, monolaurin, curcumin, mps, lactoferrin, colloidal silver etc. etc.).
Another thing that triggers dizziness like no other in me is dairy. I cannot lick a spoon with milk on it without feeling like the world is spinning all around me almost immediately. Digestive enzymes do help me flare less/digest my food better when eating.
I think one way to gauge if heavy metals are at play is to get some organic cilantro and eat several leaves and see how you feel afterwards. Cilantro is a natural chelator and I cannot eat it in large quantity without MAJOR herxing, as it breaks up biofilm as it pulls out metals.
Also, do you take epsom salt baths? Magnesium internally and externally really provides me some relief.
I hope you feel back on track soon!
Laura
Hi Laura, thanks for your feedback, it’s very helpful. I’m definitely considering adding LDN to my arsenal, even if it’s just on a temporary basis to “bridge the gap” if you will, to figuring this AP thing out. As for my dizziness, it’s so hard to explain… It’s not like the room is spinning, but my head just doesn’t feel right, and I don’t know how else to describe it other than “feeling dizzy”. **sigh**….. Again, thanks so much for your feedback.
@Lizz wrote:
Hi Woods, I just started LDN about three months ago. I was initally chicken to try it because I was afraid of a big herx. I started at 2 mg. and am now holding steady at 3mg. No herx or bad reactions. I’m not necessarily interested in a higher dosage. Labs taken last month show decreased inflammation levels which is encouraging but I am also on cortef and bio-identical hormones, which contribute greatly. I now am off NSAIDS completely. I’m going to try again a low dose of mino or doxy as I am hypersentive with high doses which really ramped my inflammation in the past. One thing I noticed about LDN is that, for me, it is a mood enhancer, I am more calm and more happy, coping better. So, I think you’ve got nothing to lose, and potentially alot to gain. I think you’re smart to start off low dose. Please keep us posted on how you’re doing. Take Care, Lizz
Keep talking Lizz… none of this sounds bad considering RA can make us evil, mean and hateful… although I’m not quite there yet. 😉 I’m very close to making a final decision- if I decide to move forward, I”m going to start with the smallest dose and move on slowly from there. 😆
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