LDN HERXING????

[carries]

Hi! I started LDN about 6 weeks ago….I did 1 mth at 1.5mg now I am doing 3.0mg for the past week. I take the LDN Mon-Fri. I have been feeling so achy lately….to the point where I woddle….my legs are achy the bottoms of my feet are achy…and my back/shoulders are achy. Not sure if this is a herx from the LDN or not….I dont want to stop it but I had to up my prednisone to 5mg…which seems to help a tiny bit….debating whether or not to just up it to 10mg but I know LDN doesnt want you to take higher than 5-10mg of pred…so I m trying to keep it minimal. This is so annoying…..I dread having to sit down because getting back up is such a chore and painful.

I am so discouraged now….I was doing so well the past year…..I have even considered stopping mino and switching to doxy in case its dile that is causing the pain….so you can see my frustration not sure what the culprit is and I dont want to stop the LDN….but I feel as if my lungs are even inflammed…but that could be from the surgery in june still healing up. Help any advice would be appreciated.

[PhilC]

Hi Carrie,

I’ve noticed that LDN makes some people worse. That’s why I always suggest that people approach it with caution. How were you feeling right before you increased the dose to 3.0 mg? Were you also feeling achy then?

Phil

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

[carries]

Hi Phil! I was nothing like this….it even hurts to breathe in deeply…..thinking bc my back muscles are contracting and all the muscles and bones are just so achy…I feel like someone beat me up. Do you think its the LDN and that I should stop?

[nspiker]

Hi Carrie,

When I upped my dose of LDN from 3 mg. to 4 mg., I definitely felt worse for a while. I didn’t know if it was my imagination or not, but it took me a while until I could tolerate the higher dose. My recommendation would be to stop or lower your LDN dosage to 1.5, and see if you feel better.

nancy

[PhilC]

Hi Carrie,

If I were in your situation, I would stop the LDN immediately and stay off of it for at least a week. Then, depending on how I’m feeling, I would start the LDN again at 1.5 mg. If I am feeling good after taking 1.5 mg of LDN for one month, I’d increase the dose to 2.0 mg.

If you don’t mind my asking, how much do you weigh? What many people may not realize is that the dose of LDN may need to be adjusted according to the person’s weight.

Phil

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

[Maz]

@carries wrote:

I have been feeling so achy lately….to the point where I woddle….my legs are achy the bottoms of my feet are achy…and my back/shoulders are achy. Not sure if this is a herx from the LDN or not….I dont want to stop it but I had to up my prednisone to 5mg…which seems to help a tiny bit….debating whether or not to just up it to 10mg but I know LDN doesnt want you to take higher than 5-10mg of pred…so I m trying to keep it minimal. This is so annoying…..I dread having to sit down because getting back up is such a chore and painful.

….so you can see my frustration not sure what the culprit is and I dont want to stop the LDN….but I feel as if my lungs are even inflammed…but that could be from the surgery in june still healing up. Help any advice would be appreciated.

Carrie, I know this must be very frustrating…I’ve been there, too. My best suggestion to you is to get an appt with an immunologist/allergist who can look at your symptoms, run labs and confirm (or exclude) what is going on for you.

Some of your symptoms are reminscient of the ones I experienced, but only a doc who specialises in immunology/allergy can really take a good look at the overall picture to discern if this is a drug-related reaction or not.

In my case, after the DILE crept up over a period of 4 months, I started taking short breaks on my own from my mino to see if I had developed hypersensitivity, as Dr. Brown described. Then, when I re-started the mino (tried 3 times with very low doses – I split caps into 25mg), I experienced all-out serum sickness reactions, which included an elevated temp (101f), crashing malaise, hot poker sensations across my back, racing heart, hyperventilating, all-over body aches and pains and increased joint pain and swelling – not pretty. After stopping mino, it took 3 days for the symptoms to abate. This was definitely not herxing, but serum-sickness (may be separate from or related to DILE) and is a serious form of drug hypersensitivity (there are different types of hypersensitivity and the kind I experienced wasn’t the kind – excessive die-off – to which Brown referred).

Your inflammed lungs should probably be checked out…it can take a while for lungs to heal after biopsy, but there is also another condition that an immunologist can check for, called, “cell-mediated hypersitivity pneumonitis,” which is even more rare than DILE, but can also occur with minocycline, and this is only something a specialist can check for. Of course, I’m not saying this is what may be occuring for you, but it is the kind of differential diagnosis a specialist could do a work-up on to narrow things down.

I know you know that this is just a peer-to-peer support group and that one of the forum guidelines restricts the offering of prescriptive advice. All we can do is share what has/hasn’t worked for us, what our doctors have done, or refer to info in the book or website…things Brown might have done. Ultimately, none of us can know what is going on with another person as we are all so unique. So, while we can offer insight from personal experience, the only way to really get to the bottom of this, with any degree of certainty, is to see a doc who deals with drug-reactions and get their take. At least this way, you can rule in/out the question of DILE, serum sickness, hypersensitivity pneumonitis, etc. If you’re anything like me, all the possibilities played in the back of mind for a while until I could speak with my doc who then told me to stop everything and see the immunologist/allergist. It was actually a relief to not have to worry anymore and get some definitive answers. 😉

[carries]

Thanks Maz! I have an appt already set up with an immunologist/allergist on monday. I stopped taking the Mino as of this monday. I did not take my dose of mino today and instead took zith. I am going to not take LDN tonight anymore other until this subsides. And I stopped as of last week the quinapril and have not noticed improvements but instead worsening sooooo I dont think it was the quinapril my guess is its the mino or LDN. I am thinking the mino. I hope that stopping it is not going to interfer with the testing an immunologist will do. Then i went for cat scan on my lungs today so we will see. They want to recheck my lungs 6mth after the surgery for any nodules again. So I am assuming if anything else where going on such as you mentioned with the pneumonitis that it would possibly show up on the scan.

[Kats]

Carrie,

The symptoms you are describing are exactly the same as mine at the moment. EVERYTHING hurts! This is what is making me think it is the LDN, because we are both in the process of upping our doses. I am not going to take my LDN tonight and see what happens. I’ll let you know tomorrow, and I’d like to hear how you feel too.

Kats
xxx

[carries]

Hi Kats! So I did the canidia spit test that maz suggested on my DILE postings and My spit test indicated canidia issues and I even had my sister do the test and her spit floated like its suppose to…..so I think that is my issue not LDN….now I have a drs appt today to see what she sees or advises….I thought it was weird why even the prednisone wasnt helping that is not normally for me 5 mg will knock it out and it wasnt I even went upto 10mg….yeast has got to be the issue here.

[Anonymous]

Hi Carrie,

How are you doing with your treatment plan now? Did you get candida under control and are you on LDN now? I only started LDN for 5 days and symptoms continued to get worse even while on candida cleanse to prevent that from happening. I also get lung pain when my inflammation is at its worst. Would love to know how you’re doing.

[Author]

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