Herxing or what?

[JZL]

I am going down hill rapidly every day. I was bedridden already, now after 7 weeks doxycycline, every single joint is hurting badly, I mean really bad, at a level of 10. My hands are useless, typing or eating hurts, feet are the worst, I can not stand for a few minutes let alone walking. Knees, shoulders, elbows, ankles, everywhere else. I don’t know how to describe the pain, feel like my joints are broken, and on fire, but they look totally normal outside. I don’t know if this is Herx or the disease worsen? But I only take doxycycline 50mg per day, it’s a low dose, how can I get better with this low dose? It scares me thinking it’s the disease progressing. Called My Lyme/AP doctor he thinks it’s Herx but it’s hard to believe. What’s every body ‘s herxing experience? Anyone bad like mine?

[Lynne G.SD]

I have SD and don’t know what you have.In the case of SD the disease kept progressing for a few months until the AP started to have an effect.You can’t stop a freight train on a dime,it takes time to slow down

[CMS12]

Hi JZL – Yes, That was my experience. I was in really bad shape, as you describe, before taking Minocycline and got much worse for at least six months after. I know that is discouraging, but hang in there. I started in April of 2009 and by December 2010 I was in remission. About September of 2009 I started noticing better days and slowly got better and better. I have RA

Cindy

[JZL]

Lynne, too bad I don’t have a diagnosis but had with rheumatologists for a few years without success, tried all kinds of heavy duty drugs. I’m now seeing a Lyme/AP doctor for severe all over joint pain. I guess I have RA or Lyme. Who knows,but I’m following AP therapy.

[JZL]

Cindy,

Thanks for sharing your experience. It’s really discouraging going through herxing. I hope it really is herxing, otherwise I’m dying. I have to stick with this treatment because I have failed all other ways. Did you have IV when you started AP?

[Lynne G.SD]

Hi JZL;
I think you should find a good LLMD because a regular AP doc would not likely know how to handle Lyme if you have it.The all knowing Maz would know for sure. Is your doc well versed in Lyme treatment? My English is not great so I might be missing something in your post
I used both IV and oral clindamycin and found that oral worked just as well as the I.V s that messed up my day’s work.Just make sure to take it with a meal if you opt to go that way.
If I was to total up the number of days that I herxed I figure it would add up to 3 years as every time I changed an antibiotic or a dosage or certain supplements it would happen and when I had to take 6 different ones for Lyme it was a constant affair.Having been a ballet dancer and figure skating teacher I know what pain is like so I just sucked it up and carried on as best that I could.
Hang in and don’t give up.

[JZL]

Lynne, the doctor I’m seeing is a Lyme doctor, whom I get from this website. I don’t know he’s good or not as I just started. My Lyme test is negative but doctor thinks I may have underlying bacteria in my body to cause the arthritic symptoms. But he likes to start me low and slow so I’m on 50mg doxycycline only right now. Now I’m having much worse reaction we are now going to up the dose or add more. I’m literally spending my days and nights in bed living in hell.

[JZL]

Sorry, typo, I mean we are not going to up my dose

[lemons]

Hello JZL,
I am so sorry that you are currently in this much pain. I can relate to it. I was there too nearly six years ago. For three months I lay in bed in total agony.
From what you say about your dosage of doxycycline being 50mg daily, I think that’s quite a high dose. Seven days a week amounts to 350mg without pulsing (no break in between).
I took 100mg of Minocin three times a week, Monday, Wednesday, Friday. That was a pulsed dose and 50mg less than you are on with Doxy.
Have you considered switching to Minocycline ?
When I was first diagnosed with RA I insisted on a Lyme test. It came back border line positive and was sent on to Porton Down in the UK. I wasn’t surprised when the second test came back negative as that’s pretty much the norm here in the UK.
However, while we waited for the results I was prescribed doxycycline for a month, 100mg daily. On the third week I was close to what I thought was impending death. Not only was the pain worse, I experienced hallucinations, sight problems and a whole host of other hideous things.
Anyway, to cut a long story short, I found an AP doctor in the UK and reached remission on Mino.
Just remember, when you’ve reached rock bottom, the only way is up. You will not be in this abyss of pain forever. The depression will lift and the birds will start singing again (when you get the correct dosage sorted out).
N x

[JZL]

Lemons, thanks for your inputs, I do need to know some bad experience to know that it’s possible to bounce back even from the hopeless case like mine. My doctor actually started me with 25mg doxycycline daily at first, I didn’t have any reaction, good or bad, so after three weeks he let me up to 50mg then I start going downhill. My disease was already bad enough so I’m not sure it is really herxing or just the disease. Doctor thinks doxycycline is relatively milder than mino if I’m going to have bad reactions so he started me on that, it’s possible he may switch to others or add more, I don’t know at this stage. I always read people have 100mg or 200mg dosage eventually so I wonder my 50mg dosage would do anything. I did Lyme test it came back negative but I have three reactive bands out of the ten, my doctor says it means some hidden infection anyway which makes sense to me.

[CMS12]

Hi JZL – I didn’t have IV. Also, didn’t have an AP Doctor. My rheumatologist was willing to give me Minocycline when I was first diagnosed in 2000 but I didn’t know about Road Back then. I had stumbled on studies done in 1997 and wanted to try it. When I wasn’t “perfectly” well six months later I dropped Minocycline and went on Enbrel. When Enbrel stopped working in 2008 I started searching again and stumbled upon Road Back. New rheumatologist wouldn’t give me Minocycline so I got brand Minocin from my GP and took 100 mg. MWF. I had to look back in old posts to see what my life was like then. I wrote “So now I’m really sick. I have been taking Minocin MWF 100 mg. I suspect a herx but I need some reassurance. I’m in bed most days…can’t walk very well…can’t sleep well…in pain….trouble dressing myself.” I remember being really scared and so tired of this dreaded disease but after about six months I would have a good day here and there so I kept going. When nearly all my symptoms went away a few months later it was amazing.

I tried doxycycline recently. It did not work for me. I’ve also had difficulty with certain generic Minocycline. I’m taking Torrent now and since I’ve been unable to get brand Minocin I am again herxing due to being off a Minocycline that worked for me for six months while experimenting with doxycycline and other generic Minocycline. I expect I’ll see good days again around February.

Anywho, I hope this helps. I know reading others stories helped me a lot. I know you’re hurting and scared, but Minocycline MWF did work for me, although it was brand Minocin which is no longer available. Maybe a switch to Minocycline would work for you. However, that first six-nine months is a really rocky road.

Cindy

[lemons]

Well there you go, CMS12’s post nailed it.Best advice ever.
A couple of things I did when I was in dying mode was to drink water, lots and lots of water. When the pain was unbearable, go against it, get up off the bed and shuffle round to the other side of the bed. If you can’t raise your arms or make a fist, try and raise your arms and make a fist. Go into battle mode. Everyday say to yourself “this is not going to beat me”.

N x

[JZL]

Cindy and lemons, you all are my hero overcoming those dark tunnels to reach a new world again. I have tried Enbrel, Humira, xeljanz with no luck. Rheumatologists don’t know what to do with me, actually they don’t know what I really have, all my tests are perfectly normal over these years. Now AP seems my last weapon. Every thought I have a DO/ Lyme/AP doctor guild me, I have to take the trails and errors to find the right medication and dosage. Your words give me some reassurance knowing I’m not the only weird case going through this. I’ll try to be strong, taking a day at once.

[April15533]

how does one tell which brand is being used?

[maddie]

I’m also sad to hear you are in a lot of pain at the moment JZL.

I’m worse than I was previously too, after being on Doxy for a few months and now Mino for a few weeks. It probably doesn’t help that I have been eating badly for the past week! Christmas excuses :-). I’ll be back on my diet soon.

Thank you to everyone who responded, it is a good reminder that this treatment is a process that takes time.

Maddie 🙂

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

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