what’s wrong with me

[JZL]

Thanks again, Lynne, whaleharbor, Mary, Phil, Spiffy, Pinkmoth, Linda, and everybody reading!
A strange thing happened yesterday – my big toe of the right feet was suddenly sore then hurt so bad that I couldn’t put zero weight on that feet. I was scared and worried to death but after five hours or so things got eased out, and by this morning that toe is back to normal. I am wondering if it is the so called herxing? so quick and so short? I surely hope it’s not something else.

[Maz]

Hi JZL, just catching up here a bit and looks like you got great pointers from everyone – quick question: have you been screened for gout?

[JZL]

Maz, yes, after many years with different rheumatologists, I have been screened for everything they can think of, including gout, all came back negative.

[whaleharbor]

Maz wrote:

Hi JZL, just catching up here a bit and looks like you got great pointers from everyone – quick question: have you been screened for gout?

I suppose it could be. Perhaps others could chime in here with their herx experience. For me, I got better like super fast (like hours after the first dose) and then went downhill really fast (hours thereafter) and thus began this seesaw pattern of worse, better, worse, better, worse, better where slowly, slowly, ever so slowly the betters were better than the last better and the worses were less and less worse. Like throwing a pebble in a pond…first there’s a big splash but over time the ripples even out and then it’s all calm. I went through herxing twice because of a switch in generics and each time it was the same for me. I don’t know if everyone experiences the herxing like I have. With that said, the RA has caused me in the past to have weird horrible awful pains that seemingly go away quickly for no reason. Another thought for you, it took a while for me to test positively for RA when I was first diagnosed…like 6 months, I think.

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[JZL]

Thanks. I guess no body knows what was happening. Time will tell, maybe.

[whaleharbor]

JZL wrote:

Thanks. I guess no body knows what was happening. Time will tell, maybe.

If you toe is still better you might have just tweaked it or something. Not everything is related to autoimmune diseases – or at least that’s what I tell myself.

So how are you feeling? How is your toe?

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[JZL]

Toe is fine, even though my feet and the rest of joints in my body are still hurting as usual. I don’t have flares, but constant hurting every day. It’s been five days on the Doxy, haven’t felt anything yet. My dose is really low I will see my doctor again in a month, maybe will up the dose by then. Thanks for asking!

[maddie]

Hi JZL

I haven’t had a diagnosis yet either, and I have joint pain in my fingers, wrists, elbows, ankles, and knees. I don’t have any swelling. All my tests have come back negative as well.

I have only had ‘whatever this is’ for four months but I have decided to start the AP as well. I am also on doxy, three times a week at 200mg and started a few weeks ago. I have become slightly worse so far, however, you do get worse before you get better, so I’m hanging in there.

Fingers crossed for both of us. I just wanted you to know you aren’t alone on this journey. Feel free to stay in touch,

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.

[Pinkmoth]

Good luck Maddie and JZL on starting your AP journey. Maddie, like you I could not get a diagnosis but refused to sit by while I worsened and so started AP as soon as I could.

Make a post anytime you have a question or just want a sympathetic ear. I hope you both soon begin to see some of the life-changing improvements that are possible with this treatment.

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[JZL]

Maddie, I thought I was the only weird case on the earth, apparently I was wrong. You are still in the early stage of the disease so I think you have a much better chance and quicker response to recovery. Please keep us posted your progress, it would be valuable information and big encouragement to me.

[JZL]

Pinkmoth, thanks for your kind words. It’s a tough journey but hopefully I am in the right direction.

[maddie]

Hi JZL and Pinkmoth

Thank you both for your encouragement. I will keep you updated!

I’m also seeing a private doctor next week who specialises in Lyme disease/inflammatory arthritis. She offers metronidazole as per the arthritistrust.org protocol.

There is really only one clinic herein the UK that offers minocin therapy and they are ridiculously expensive! Plus they won’t consider antibiotic therapy until I have a diagnosis. So I’m doing the doxycycline off my own back (I’d rather not but have no choice).

The metronidazole doctor also offers a rife machine? Not sure about that but it’s worth a try 🙂

I’ll update soon, 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.

[JZL]

Maddie,
My AP doctor is a lyme/infection specialist whom I found from this site but don’t take insurance and is very expensive too. Because I don’t even response to heave duty RA drugs, I kinda of think my disease (whatever it is) is infection related. This treatment is such an individualized process, we need to explore a way that fits us best. My doctor started me in a very low dose, 25mg every day, after the first week without any bad reaction, I wanted to gradually increase my dose by adding additional 25mg twice a week. I am trying this myself too.

I wish you good luck with the new doctor. Keep in touch.

[maddie]

Hi JZL

Thanks for wishing me luck! I hope all goes well with gradually increasing your dose. I find I get on fine with doxy as long as I take it after food. Once I didn’t and felt a bit sick. Don’t forget to take some decent probiotics every day too to keep your gut balanced. I heard it’s best to take them at a different time to the antibiotics.

That’s interesting you are seeing a Lyme disease specialist too.

I’ll update you later next week!

All the best till then,

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.

[Pinkmoth]

Maddie,
I think doxy binds to food, especially food with a lot of calcium in it, so you get the maximum benefit from it if it’s taken on an empty stomach. You may know this but are choosing to take with food anyway because that’s the only way you tolerate it. But I found I could tolerate doxy even on an empty stomach if I drank a ton of water with it.

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Author]

Posts