Allergy or Herx?

[aristontyler]

My wife has been taking Mino, and before that Doxy. She had started at higher doses, but it caused unbearable pain, so she has reduced her dosing. In both cases (mino and doxy), when she was on the higher dose, it caused breathing difficulty – wheezing. Once she stopped or reduced the dose, the breathing difficulty subsided.

My question is this: was she having a herx reaction, or simply an allergic reaction? I have not read of anyone having breathing difficulty with the herx, but it is common with allergic reactions to antibiotics. It’s hard to know what’s going on. Between the doxy and mino she has been on the AP for six months now with no improvement.

[Woods1977]

Hi,

Discliaimer- I’m only a patient, and something like difficulty breathing definitely requires a conversation with your doctor.

However, I did come across the below link, where it calls out shortness of breath. I can’t say how “credible” this resource is… so again, I would stress the importance of having a conversation with your doctor.

http://www.lymediseaseblog.com/jarisch-herxheimer-reaction-lyme-disease/

[PhilC]

Hi,

It sounds to me like your wife may have lung involvement — rheumatoid arthritis can affect the lungs (and other internal organs). It may also be that the lungs were the original point of entry for the infection. So, yes, this could very well be a kind of “herx” reaction. The fact that the wheezing was relieved by lowering the dose of minocycline tends to (strongly) support that possibility.

Phil

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

[sandrabonfield]

Hello
I agree with Phil, I have RA and I also unfortunately have lung involvement, being lung damage. When I get a flare up I feel it in my lungs and can be extremely wheezy, and pain in the chest.

[Anonymous]

Hi, Could you please tell us more about your wife, what antibiotics she started six months ago, when she started Doxy and Mino and what dosage. Does she have asthma?
Best wishes,
Linda L.

[aristontyler]

Thanks, everyone, for the replies. My wife started Doxy six months ago. It was really hard on her stomach, so she switched to Mino a little over a month ago. She does not have asthma.

After reducing her dosage to 100 mg every MWF, her breathing is much better. We are reluctant to tell her doctor of her breathing difficulty because he is not very familiar with the antibiotic protocol, so if it is just sensitivity but he fears a bad allergic reaction, he may take her off. She plans to just try and manage it with the correct dose. I sure do wish we were seeing improvement by now…

[PhilC]

Hi Ariston,
@aristontyler wrote:

I sure do wish we were seeing improvement by now…

It’s not really unusual that your wife hasn’t seen any improvement yet (see below).

Patients must be advised that the treatment is extremely slow and gradual and may take six months to a year before they can really see much improvement. In more severe or long-term patients it can take much longer (2-5 years).

Source: Beginning the Therapy

How long has your wife had RA, and what medications is she taking besides minocycline?

Phil

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

[aristontyler]

Hi Phil, we know that the protocol can take some time. It is still hard not to get discouraged six months in. She is taking Mino, motrin (to try and keep the inflammation in check, though it doesn’t seem to do much), thyroid medicine, and lorazepam for anxiety. She occasionally has to take metroprolol when her heart rate gets really high, but it is very intermittent.

She had been on 5mg of prednisone, a high dose of lortabs, and antidepressants as well, but she removed herself from all of that over a long period, which was very difficult in an of itself.

[PhilC]

Hi Ariston,

How much Motrin is your wife taking?

Phil

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

[A Friend]

@aristontyler wrote:

My wife has been taking Mino, and before that Doxy. She had started at higher doses, but it caused unbearable pain, so she has reduced her dosing. In both cases (mino and doxy), when she was on the higher dose, it caused breathing difficulty – wheezing. Once she stopped or reduced the dose, the breathing difficulty subsided.

My question is this: was she having a herx reaction, or simply an allergic reaction? I have not read of anyone having breathing difficulty with the herx, but it is common with allergic reactions to antibiotics. It’s hard to know what’s going on. Between the doxy and mino she has been on the AP for six months now with no improvement.

Hello Ariston,

My post is not intended to tell you why your wife is having a reaction, but I do want to share with you the reaction I had when I made my first trip to Iowa to see an AP physician and begin IVs and AP treatment.

I just did a search to find my post about this some time ago. If after you read the post on this link, you have any questions for me, I will be happy to try to answer them. Also, the physician I saw at that time is such a special person, he is always glad to give his input to those (or their physicians) who have questions he might help with. Good luck to you both. So glad you found RBF BB. So glad I did, too, quite a few years ago.

viewtopic.php?f=1&t=10089&p=73152&hilit=pneumonia#p73152

Best,
AF

[aristontyler]

Phil, she takes it intermittently, when she feels like the inflammation is the absolute worst. I have suggested that she take it regularly, as Dr. Brown recommended, but her stomach is sensitive to her medications.

AF, I don’t remember that post on the other thread I had started. I don’t know how I missed it, but that is very encouraging in that it confirms what my gut was telling me. Danniele is continuously experimenting with her Mino dose, which is kind of what you have to do, I guess. But knowing that the die-off can affect the lungs is encouraging. Hopefully we will have success.

[PhilC]

Hi Ariston,
@aristontyler wrote:

Phil, she takes it intermittently, when she feels like the inflammation is the absolute worst. I have suggested that she take it regularly, as Dr. Brown recommended, but her stomach is sensitive to her medications.

There are a few gut-friendly NSAIDs that your wife could take instead of Motrin. They are available by prescription only, so she would have to ask her doctor to prescribe one of them for her. I recently posted some info on this topic here:
https://www.roadback.org/forum/viewtopic.php?p=73356#p73356

In my case, the most effective thing I did was to identify and eliminate offending foods from my diet. Nothing else I have done has ever come close to that in terms of effectiveness (i.e., relief of joint and muscle pain). I first talked about that here: https://www.roadback.org/forum/viewtopic.php?f=1&t=4972

Phil

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

[JohnnyMax]

@aristontyler wrote:

Phil, she takes it intermittently, when she feels like the inflammation is the absolute worst. I have suggested that she take it regularly, as Dr. Brown recommended, but her stomach is sensitive to her medications.

AF, I don’t remember that post on the other thread I had started. I don’t know how I missed it, but that is very encouraging in that it confirms what my gut was telling me. Danniele is continuously experimenting with her Mino dose, which is kind of what you have to do, I guess. But knowing that the die-off can affect the lungs is encouraging. Hopefully we will have success.

Keeping your gut in good condition is extremely important when it comes to autoimmune issues. All the NSAIDS and Antibiotics really take a toll on the GI lining, so you need to supplement it to keep it in good condition and repair the damages that is done on a daily basis using these meds. Let me suggest a few supplements that should greatly help …

Glutamine is an amino acid that regulates repair the lining of the gut and keep the junctions tight, to heal and prevent “leaky gut” syndrome. It improves nutrient absorption and increase immune regulation, among other things. You need to take this on an empty stomach, so the amino acid does not compete with other foods, especially proteins, for absorption for best results.

Marshmallow root infusion. This is a potent anti- inflammatory, that coats the entire GI system, mouth to colon, and helps heal all type of issues. You mix a few spoon of this with cold water, put in the fridge for a few hours and drink at some point.

As an alternative you can use Slippery Elm powder, a bit harder to prepare, but does the same thing, coats the lining of the GI tract and helps the inflammation to heal.

You can look these up online or speak to your doctor on how much to take. One thing, since the last 2 coat the GI track, they make absorption of medications pretty hard, so they should be kept away from meds for a few hours, at least.

All this stuff is cheap, but does the job. Good luck.

John

I use all 3, usually alternate the last 2 to mix it up and they truly help with gut issues.

[aristontyler]

Johnny and Phil,

Thanks for the information. Danniele has tried a lot of different diets, plus a lot of dangerous drugs. I will look into some of the supplements with her to see about protecting her gut, but the Mino has actually been a lot gentler on her than the Doxy, and we want to be careful not to inhibit its absorption. Her doctor recommended an probiotic, of course.

She is still (endlessly) experimenting. The last few days have actually, from my objective standpoint, seemed better. I am cautiously optimistic that we may be turning a corner, now about seven months into the AP. But I know that the ride may still be bumpy for awhile. We try to continue trusting God, whatever he decides to send our way, but we pray for healing nonetheless.

The help on this forum has been invaluable, especially the updates and encouragement from others who give their own stories. It helps us to stay the course when we hear how much persistence others have had in not giving. Long-term treatments like this can be discouraging if you don’t have people waving you on from the other side of the finish line. We are grateful for everyone who continues to encourage and offer advice, and hope to be on the other side helping newcomers one day soon.

[PhilC]

Hi Ariston,

Is your wife taking N-acetyl cysteine (NAC)? If not, it is worthy of consideration. It helps to protect the liver, and it kills one of the forms of Chlamydophila pneumoniae (a parasitic bacterium). Because of NAC’s ability to act like an antibiotic, it may be necessary to build up to the full dose gradually.

Phil

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

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