Can more rib pain be a herx from Alinia?

[marypart]

My son has been taking Alinia three times a week along with twice a day biaxin, for babesia. His rib pain (near the sternum) seems much worse.

Is this a herx?

[Eileen]

Hope I can shed some light on this. Years ago, I had very painful rib pain — even to the touch. It took some time on meds to eradicate the babesia. It could be a herx., but everyone is so different in the journey in these diseases. Just be patient and keep you dr. up to date on what’s going on. Sometimes just a little change in meds can help. I hope you son improves soon. I also have a child w/babesia and the rest of the infections. He’s going great now!
Eileen

[Kim]

@marypart wrote:

My son has been taking Alinia three times a week along with twice a day biaxin, for babesia. His rib pain (near the sternum) seems much worse.

Is this a herx?

Hi Mary,

It’s almost unbearable for a parent to watch their child suffer, so I’m sorry. Your son could possibly get some significant pain relief with frequent use of an infrared sauna for detox. Drinking lots of water and flushing it out removes a lot of pain-causing toxins.

Eileen, how wonderful you son is back in the game! 🙂

Take care…..kim

[Maz]

@marypart wrote:

My son has been taking Alinia three times a week along with twice a day biaxin, for babesia. His rib pain (near the sternum) seems much worse.

Is this a herx?

Hi Mary,

If this helps…wherever the bugs are hanging out, they will be targeted by the antibiotics, die and release toxins that create a bit of inflammation in that area. Babesiosis, being a red blood cell protozoan (piroplasm) infection and intacellular, loves hanging out in places rich in RBCs, like the spleen (an organ that is part of the lymphatic system which stores and filters RBCs) and the lungs where deoxygenated blood rushes for oxygenation. The spleen is right under the left rib-cage, lying right alongside the stomach…pain in that area, too, is a good sign that babs is active or dying off.

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

My best fellow patient guess is that the rib-cage becomes inflammed due to the very nature of this particular RBC parasite and the areas of the body it loves to inhabit. One of the most difficult symptoms of babesia, as a result can be “air hunger” and rib cage pain.

If your son has babs, Mary, it sounds like he’s on the right treatment for it. If it all becomes too intolerable, though, or he has symptoms that are a concern, these should be mentioned to his prescribing doc as sometimes a change in medication (if side-effect related) or dose does the trick. Alinia and a macrolide abx are the preferred drugs for pediatric cases of babesiosis, though some adults are also prescribed Alinia…in adults, Mepron, malarone, clindamycin or a different macrolide, flagyl or tinidazole are generally used for babs in various combos. I’m currently on Mepron and Biaxin in three week pulses, for both Lyme (Mepron – and I think Alinia – hits the cystic form of borreliosis) and babs.

Hope he feels better soon, Mary, and his doc has some good insight to help him feel more comfortable while going through treatment.

[marypart]

Maz,

Actually, everything I know about Babesia just confuses me about pain in the costo-sternal cartilage. His pain is all in the rib cartilage where it touches the sternum. It started on one side, and months later began on the other. It’s been there for 18 months now.

Everybody says it is hard to eradicate Lyme in cartilage because blood doesn’t get there. So if babesia is a blood cell problem, why does cartilage hurt?

Maybe somebody else who had cartilage pain… in the costal-sternal area… could chime in.

Did anyone have significant inflamation there, and get rid of it?

Thanks,
Mary

[Maz]

@marypart wrote:

Everybody says it is hard to eradicate Lyme in cartilage because blood doesn’t get there. So if babesia is a blood cell problem, why does cartilage hurt?

Mary, Michele has also suffered from rib cage pain and air hunger associated with babesiosis. You could try PMing her for her experience of this.

As to the question on why cartilage in the ribs hurts, my best guess is that it’s for the reasons you mentioned above….the ribs are all joined by connective tissue (just like other joints) and because babesiosis has a proclivity for areas of the body that are highly vascularized (heart, major arteries and veins in the chest), the bugs just have a convenient nesting place in these tissues. ❓

[nord]

Having similar problems, but no Bab dx, I wonder why the common symptom/finding of ReA, costosternal joint (among other cartilageous joints as well as tendon insertions) pain/inflammationis excluded as a possibility? Chlamydiales (obviously not to be excluded here) are known pathogens in ReA, e g see Carter, Hudson: Reactive Arthritis: Clinical Aspects and Medical Management; Rheum Dis N Am 35(2009)21

[marypart]

Nord,

I think along the same lines.. I’ve seen Carter’s work, including the clinical study he published this year in Feb about using combo abx on arthritis triggered by either chlamydia trachomonis or chlamydia pneumonae. My son has antibodies to chlamydia pneumonae and I he had a really bad cold/sinus infection right around the time he broke out with a rash– about a month and a half before the arthritis. At the same time he had a gastroenteritis… so the number of possible triggers is endless.

So many people say “rib pain” with babesia but they don’t clearly seem to be talking about the costosternal cartilage inflammation that my son has.

Hmm, so maybe the babs treatment is really going after the chlamydia pneumonae. I’ve looked at the cpnhelp.org, and I just don’t tend to see it as his symptoms..

Well if Lyme/Babesia treatment doesn’t work, I guess we’ll consider going with the standard mino AP.

Thanks for your comments…

Mary

[APbeliever]

I had pains with Minocycline (using 200 mgs every day) on my the right side of the lower rib (where the liver is ). I had to discontinue Minocyline for two months . I started with a lower dose (100mgs) and it helped. Trying lowering the dosage (consult your doctor first) to see if it helps.

[nord]

Mary, to me your son’s symptoms is much like a smoking gun in the hands of Cpn 🙂 , what is it that you don’t see with him? There could of course be other infections at work.

My speculation is that tetracyclines are good in combo with macrolides for other chronic infections than Cpn sensitive to them, e g Borrelia (the same reasoning behing the Cpn treatment: hitting the 30s and 50s ribsomal subunits simultaneously, multiplying the effect of the individual abx and cutting the risk of resistance with this). Conversely, cycling abx in succession is a less good idea, as it induces resistance. The nitroimidazole during pulses is good against Lyme (acting in synergy with the macro: the Brorsons’ papers). Macrolides are not generally used against Borrelia, especially with neurological involvement, as it doesn’t reach CSF in high concentrations. However, Borrelia is rarely found there, and macrolides (Roxithromycin and Azithromycin) have been found to accumulate well in brain tissue (hence it is used in treating MS patients with shown or suspected Cpn background).

APbeliever, liver/gallbladder issues are common when hitting Cpn, possibly liver infection (seems common). Temporarily cutting back Mino is sensible, did you start with 200mg/d? So is taking liver-protectant supplements (NAC, silymarin…). Several have reported pain in that area, pain that goes away after a while. Cpn also commonly infects the liver, going slowly is then a good idea (if many liver cells are infected, hitting the Cpn too heavily will cause too much apotopsis and liver problems at once). A bit on that here: http://cpnhelp.org/recentobservations

[lynnie_sydney]

@nord wrote:

APbeliever, liver/gallbladder issues are common when hitting Cpn, possibly liver infection (seems common). Temporarily cutting back Mino is sensible, did you start with 200mg/d? So is taking liver-protectant supplements (NAC, silymarin…). Several have reported pain in that area, pain that goes away after a while. Cpn also commonly infects the liver, going slowly is then a good idea (if many liver cells are infected, hitting the Cpn too heavily will cause too much apotopsis and liver problems at once). A bit on that here: http://cpnhelp.org/recentobservations

Thanks for that link Nord. Very interesting in light of the fact that I had a major liver crisis in July last year – they think sparked off by a bad response to a sleeping aid med. My AP naturopath said that set off a Lyme response in my liver – but I wonder now if it was a CPn response! Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[nord]

Hello Lynnie! Yes, it looks like something to look into. As I guess you’ve seen IBD is one of the illnesses where a clear link to cpn has been shown (references in one of Stratton/Mitcheell patents), but several on Cpnhelp also report occurrence or worsening of other gut issues (of different location) with abx. Issues that improve with time (making abx hypersensitivity or fungal infections a less likely explanation). I don’t recall what your gut issues are though. When reading your reply it struck me that my stomach has been fussing slightly since over two decades 😯 , almost gone now (got a little back after second tini pulse) 🙂 .

[DragonSlayer]

Hi, Mary:

Has Your son been tested for the HLA B27 antigen? This sounds like AS or Reiter’s, but if giardia are present it could cause a Herx reaction of this nature. Giardiasis can cause costochondritis and mimic closely early AS.

I would consider the Alinia reaction as a good sign if it is in fact a Herx…just make sure it is transient and modulates down within a week or so; in AS this ribcage pain can stick with us for many years and in that case it is better to eliminate the pains with diet in addition to antibiotics.

Best to You and to Your son,
John

[marypart]

Yes, HLA b27.

My whole family is. Remember I have four siblings with Reactive Arthritis– three with Crohn’s.

One was definitely triggered by the Hepatitis B vaccine. That’s my sister.

Deep down I believe they all have Lyme. The three brothers… all spent their childhoods in the Connecticut woods and started getting arthritis in their teens or early twenties.

No arthritis in the previous generation.

Back to the Alinia Herx question.. Could be a herx– it lasted about 3 days and has subsided. In some ways his joint pain is slightly down.

But, it’s also popping up in some new places…

It could also be a 7-day Babesia cycle of flares. It seems to be coming back tonight. He’s flaring every 7-10 days– and the first clue are dark blue circles under the eyes and even on the under-brow area. Hm. He’s had very red eyes twice in the last couple of months. (One of my brothers has had bad problems with iritis his whole life. He’s the most disabled… iritis was his first symptom in his teens.)

I think it’s Babesia, Lyme and perhaps some load of Cpn.

He probably needs more intensive Babesia treatment… but we have to go slow, because at the beginning of Sept he had a massive all body rash response and we had to take him off everything for a couple of weeks.

Doctors appts coming up.

All part of the long road, I suppose.

Thanks for all the support. This board is our salvation.
Mary

[DragonSlayer]

Sorry, Mary:

Crohn’s, Reactive Arthritis (chronic; after two years), and AS are all caused by the same thing, same mechanism.

AS is absolutely indicated in a B27 positive individual, and it has been triggered by the Hep B vaccination (five cases that I have corresponded with directly and many others suggested).

The active agent in this continuum of diseases is the immunoglobulin IgA (in lymph, the dimer) and it has a half-life of 100 hours.

Better to keep a food diary than do more testing for anything. If You want to trigger an AS flare all You have to do is eat (and pay attention to statistics–not just one meal but several in a row for example) plenty of breaded and deep fried starches–onion rings, tempura, bread pakora, etc. Years ago I had severe flares every seven days–and took the entire weekends to recover from Friday food fare that was starchy “treats” (albeit horrible treatments).

FEAR OF IRITIS keeps me on the straight and narrow diet path, btw. I just will not put up with compromising my eyesight and did not know enough to suggest “…can I eat starch until I need glasses?”

So I have to disagree about every hypothesis except AS, and suggest doing them the favor of obtaining Carol Sinclair’s book “The New IBS Low Starch Diet” available in UK (not yet “translated” into American English).

Ok, I know exactly why we get AS in our late teens and early twenties, and I wager there is not one currently practicing rheumatologist who can explain this, let alone why a genetic disease waits almost 20 years to begin. I can’t explain why Crohn’s Disease is less likely in a B27 person, but in a B27 tissue type if there has been no intestinal resectioning, I would suggest that it is just AS with emphasis on UC; AS is already a myriad of diseases–and some people want to name all 200+ even including fibromyalgia–the most common misdiagnosis of AS in women (explains the gender rate differential).

Good Luck to Your family,
John

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