New at this….Main question, herxing

[2011Rio]

I have justed start AB tx and i will be getting the book, “The New Arthritis Breakthrough”. In the mean time thought maybe someone could give some input about herxing. I was on doxicycline but have switched over to minocycline and have taken one dose of 100mg. That was sat. morning, by sun. morning I could tell things were getting worse and by sun. evening I hurt in almost every single joint; neck, shoulders, elbows, wrists, fingers, spine(lower), knees, ankles feet, hips, jaw (i think I got it all, lol). It felt like ligaments and muscles ached/hurt too. I have never had everywhere hurt, so I wondered if it was from herxing since the medication can reach all those places. Now mon. i am a little better then last night or maybe more than that, just waiting to see how it progresses. Also, wanted to ask if anyone has had to be on a higher dose than 10mg of prednisone while going through a flare or herxing? I am at 20mg right now and i am concerned, would like to get off. The only other thing i take is naproxen. Speedy health to all! Thank you

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Maz]

@2011Rio wrote:

I have justed start AB tx and i will be getting the book, “The New Arthritis Breakthrough”. In the mean time thought maybe someone could give some input about herxing. I was on doxicycline but have switched over to minocycline and have taken one dose of 100mg. That was sat. morning, by sun. morning I could tell things were getting worse and by sun. evening I hurt in almost every single joint; neck, shoulders, elbows, wrists, fingers, spine(lower), knees, ankles feet, hips, jaw (i think I got it all, lol). It felt like ligaments and muscles ached/hurt too. I have never had everywhere hurt, so I wondered if it was from herxing since the medication can reach all those places. Now mon. i am a little better then last night or maybe more than that, just waiting to see how it progresses. Also, wanted to ask if anyone has had to be on a higher dose than 10mg of prednisone while going through a flare or herxing? I am at 20mg right now and i am concerned, would like to get off. The only other thing i take is naproxen. Speedy health to all! Thank you

Tricia

Hi Tricia,

I think this if your first post, so just sending a warm welcome to you! 🙂

Yes, sounds like herxing. Even switching between tetras can elicit herxing. I just switched from tetra to doxy as I was unable to locate tetra in pharmacies….even on a lower dose, it gave me a very good “zing” this past week. Mino is considered to have superior tissue penetration when compared to doxy or tetra, as it has greater lipid solubility and can cross the blood/brain barrier as a result. This means it can cross the outer lipid layer of cell walls more easily and reach intracellular bugs.

Tetras are “bacteriostatic” in action, meaning that they work by entering the bug to disable it, but don’t kill these bugs outright (except in much higher doses). Once disabled, it is the immune system that goes in for the kill.

http://en.wikipedia.org/wiki/Bacteriostatic_agent

It is the toxins released by bugs that cause the hypersensitive rheumatic tissues the problem, so the more die-off (and toxin released by dying bugs) the bigger the herx. A herx isn’t much different from a flare, as both are the result of circulating antigen (toxins) released by bugs. This is why it can be so difficult to discern a herx from a flare until after the fact, I have found – the difference is that in the case of a flare, the bacterial toxins are random releases of antigen by the bugs, whereas a “herx” is a controlled flare induced by abx that are threatening them.

One can safely say that whenever there is a change in protocol…change in med, dose, additional abx, etc., there is the potential for herxing. Anything that may stir up the offending bugs may cause them to release toxins and this is what causes the inflam and discomfort. This is why learning how to detox is so supportive to rheumatics, as it is these circulating toxins that increase inflam and free-radical oxidative damage…..kind of like what happens to metals that rust. So, doing anything one can to reduce oxidation thru detoxification with anti-oxidative supports goes a long way to helping the body release these circulating toxins. You’ll find this is a topic discussed often here, so you will pick things up as you go and you can also use the search box above to read about what others are doing to detox. This is a really valuable tool in the AP armamentum.

It’s not a good idea to try to wean from any other drugs until one is stable on their AP so that drug rebound and the inevitable increase in inflammation from this doesn’t increase circulating antigen any more than necessary. So, usually folk will wait until they have found a good abx dose for themselves and are feeling pretty stable in symptoms before attempting to slowly wean. Pred is a very challenging one to wean from, as any dose over 5mg will shut down normal adrenal function when used for extended periods and it can actually be dangerous to just stop those last 5mgs without giving the adrenals enough time to re-awaken, as they do atrophy with extended use of pred. Others here have successfully weaned from their pred, so when you feel stable enough to attempt it, it’s worth asking how others have done it. Seems that tiny doses of .5mg and done on alternate days is the way to go, but this can take months and drops larger than this can set off pretty heavy flaring. Of course, it’s different for everyone, but one should never attempt to just stop or drop their pred dose suddenly and careful physician guidance is advisable.

Perhaps others can chime in for you on what they have done to get off their pred, so that when you have found your “stable place” in a few months on your mino, you can be well-versed in how to go about this. In the meantime, reading and learning about detoxing and trying a few of these methods out should help to support progress.

Nice to meet you Tricia!

[2011Rio]

Hi Maz,
Thank you for the welcome. I got your email the other day, thanks for that too. Plan on getting back with you, haven’t been able to type. Took all I had to type that post.

Well, I had that horrible herx on Sun., yesterday I was a degree better and today I am even better. So I really do think it was a herx and not a flare, plus it was just way different than any flare I have ever had. I’m excited, this is the first herx that I have been able to identify. Therefore, I feel like it means I am on my way to a healthy body, Praise God!! This is the first time my NMD doc has used this tx, so thus far have felt like we have been walking in the dark. Trying to get my hands on as much info. as possible. I am hoping that book is really insightful. I will take your advice and post for getting of pred..

I will get my profile complete, here sometime soon. I’m playing catch up know. Could use all your prayers (anyone). I have to find a place to move to and then move,I am out of work for now, raising two boys and going thru this all at the same time! Sheesh, but I know my Heavenly Father is more than enough.

Talk soon,
Thanks Maz

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[dianne2]

Hi Tricia. I’m new too.

Just a note to let you know I will pray for you. He will see you through this.

Dianne 🙂

[2011Rio]

Hi Dianne2,

It’s nice to meet you. Thank you for praying and I will hold you up in my prayers also.:) We are both on the road to our healing!! How long have you been dealing w/ your diagnosis? Mine all started in late Oct. of 2011. I wasn’t diagnosed until Dec., went to a RA specialist in Jan, and now here I am. Just start AP about 3wks ago. It’s late so I’ll close for now.

Walk in your healing,

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[dianne2]

Tricia, I too was diagnosed between October and December of ’11.

I started with pain and papules on my fingers. When my doc heard of my history last year of sun-induced rash, she suspected lupus. To make a long story short, Lupus was ruled out, but I was diagnosed with dermatomyositis.

I am in the middle of my first flare, or herx, or something right now. I made another post regarding that. A week after beginning abx, I broke out in horribly itchy rashes, both sun induced and not. Even though I stopped the medicine almost a week ago, I am still getting more and more skin irritation, and now muscle cramps, so I don’t think it’s sensitivity to the meds. I think (hope) it’s herx, because that would indicate that the med is working, and the timing is too coincidental with the abx treatment.

Anyway, several years back I was diagnosed with another “incurable” disease (slow-growing, but advanced cancer), but even though my doc told me, “You’re not cured; you’ll never be cured,” my oncologist about a year ago told me I am cured.

That was due to lots and lots of prayer. I spent a lot of time going over healing scriptures. God is good!

Then last year my mom had lymphoma. It just disappeared. The oncologist said he had never seen anything like that before. She had had CT scans and biopsies — each test looking better than the last. After a totally negative surgical biopsy, her oncologist recommended a repeat CT in 3 months. When that report came back, it said that her lymph nodes had shrunk down to normal “consistent with successful treatment.” Well, she didn’t have any treatment.

I am now hoping to find a young rheumatologist who is open minded to abx treatment, as my PCP I’m seeing is open minded, but totally inexperienced with that topic. My fear of going to a rheumy is that he or she will just put me on some toxic drugs and expect me to just sit back and wait for the disease to progress. That is not a option!

Anyway, thank you for your prayers.

Dianne

[matv]

Dianne and Tricia. Welcome to you both. 🙂

Dianne, scary diagnoses for you and your mother! Im glad they’re clearing up. Lymphoma can be mimicked by some drugs if I remember correctly but you said she had no treatment. So, well whatever is happening, thank God it is. It could be remission. Did you know Mr. T has had lymphoma for at least 10 years? I pity the foo who don’t know that! 😀 hehe.

Im glad you’re getting herxes (as bad as that sounds) it means AP is working.

When I was diagnosed with reactive arthritis, I was stiff and could barely walk
My rheumatologist here in Toronto wanted to throw me on methatrexate. I appreciated him for wanting me to stop flaring but I respectfully declined. My rheumy in Victoria BC put me on doxycycline out of a suspicion nothing more, since people with my condition do “better” .. he had no interest in finding out which bacteria it was but he just gave me the antibiotics. He wanted to try this before going on more toxic drugs.. I should be thanking him as it lead me to here.. (after all, all I had to do was Google doxycycline and arthritis and it gave me clues to this foundation’s existence) ..it gave me hope that I could walk again. Then the wonderful Max got me in touch with an LLMD in vancouver because the symptoms in addition to my arthritis suggested Lyme. Its nice to know im not just crazy for what’s been happening to me the past 8 years. If treatments get too expensive, I know of other ways to get the job done to at least put the bugs at bay, however regardless of paths, complete lifestyle changes must be made, regardless of diagnosis.

Goodluck to both of you, very glad to meet you and im excited that you two are on this path to healing

[lepartain]

I have scleroderma in my skin with the most affected areas being my lower extremities. I found a friend who had scleroderma and is now in total remission after having found the book, Scleroderma The Proven Therapy That Can Save Your Life. She found a doctor and began the therapy and was on it for about 2 years and is totally healed. I got the book, read it and became convinced this was the way to go, so I found a doctor through the Road Back website and have been on Minocycline for about a month and a half. Pain in my skin has increased dramatically and I’m guessing this is the stage where patients get worse before they get better. I was wondering if there are any other scleroderma sufferers out there who have gone through this who can give me some encouragements. Is there a medication that can help me feel calmer? This increased pain is driving me crazy. I have to take Lunesta and pain meds to sleep at night, and can hardly function during the day because my feet and ankles (skin) burns and I also ache all over.

[dianne2]

Thanks for the welcome matv. Best of all to you in your treatment/recovery.

Dianne 🙂

[2011Rio]

Ya…matv. Thanks for the welcome! I pray the best for you. 🙂

Hi Dianne,

Good to hear from you. Sounds like you have been through the wringer, but there is always hope in God. He has the final answer and He says we are healed. That’s the Word I am sticking to!! It’s my final authority! So, keep those healing scriptures going and I have you on my daily prayer list. Glad to have a faith buddy. I was excited to hear about the miraculous healing with your mom, I’m sure you had ppl praying for her. I do believe that God put this information about AP and the Roadback in our path purposely. Hope by now the herxing has allieviated some for you and progress is evident.

I am doing good. I switched over to minocycline, like I said. (I think I said) lol I had a very bad herx from that dose. Then this past Monday I took another dose but it was a lower dose, big difference. I did not herx as bad. Making progress!!

Have a blessed day.

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Parisa]

Hi Lepartain,

I’m hoping some scleroderma patients will see your post and give you some pointers. It might help to start your own thread as the originator of this thread has RA. There are some differences to how RAers and sclero patients respond to treatment. Unfortunately, AP does take a while to kick in. Some are able to hasten the improvement by getting IV clindamycin. Any chance you could go see Dr. S in Iowa? Are you taking brand mino or minocycline? For scleroderma it seems to be more important to have brand name although there are a few generics I believe that some do well on. Hang in there. Better days are around the corner.

[Author]

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