ABX didn't work – now what?

[anewday]

My husband has been going to Dr. F for about 2 years now. He began abx in August 2008.

His main symptom is a deformed an inflammed wrist. Dr. F believes he has palindromic RA. Those symptoms (wandering joint pains) HAVE stopped under abx therapy, thankfully, however, he has had an awful “set in” inflammatory condition in his wrist for several years now. The abx has not helped that at all.

He has seen a hand surgeon. The recommendation was to do progressive casting in order to basically force his hand back into a normal position (it's badly deformed by now). There is nothing to operate on though so that is the only option which Dr. F was not “warm and fuzzy” about. LOL

So basically he continues on abx (minocin). He takes ibuprofen daily for the pain. The swelling has never gone away.

I feel like it's time to do something else. If it were a mycoplasma, the abx would have gotten it by this time.

This has been a long road for him. He only communicates with Dr. F during his appts and Dr. F really does not know why the swelling won't go down. I feel like he doesn't know how to help him, but he won't come out and say it.

Any ideas for what options we might have now? Dh doesn't feel quite ready to give up because honestly, he thinks the abx is his only hope. 🙁

[Kats]

I too have palendromic type arthritis, and started AP last August.  It seemed to be working fairly well, but in February one wrist began flaring and became chronic and was almost totally useless. 

I went to a walk-in clinic and asked for cortisone injections, the maximum amount they were willing to give.  The doctor injected my wrist in 5 places, and within 3 days my wrist was totally better, although weak.  This was a month ago and it is still fine. 

I figured with that level of inflammation the antibiotics would not reach my wrist so I just wanted to reduce the inflammation at any cost.    It may be the same case for your husband; that he may need to reduce the massive inflammation before the antibiotics can penetrate the troubled joint. 

Although cortisone can be dangerous, for me the injections seemed to be a turning point in my AP. 

(In addition I have started seeing an AP doctor and am on new antibiotics in addition to Minocin to address other infections) 

I hope he finds relief soon and continues to progress with AP.

Best,

Katie

[lynnie_sydney]

Dawn – sorry that your husband's wrist is doing so poorly. I almost hate to say this but I would consider testing for Lyme Disease before considering either surgery or any steroid drug treatment. Palindromic symptoms are very common in LD and, if Lyme is in the mix, then steroid drugs are not good to use. 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)

[anewday]

[user=30]lynnie_sydney[/user] wrote:

Dawn – sorry that your husband's wrist is doing so poorly. I almost hate to say this but I would consider testing for Lyme Disease before considering either surgery or any steroid drug treatment. Palindromic symptoms are very common in LD and, if Lyme is in the mix, then steroid drugs are not good to use. Lynnie

Hi Lynnie – He was tested for Lymes about a year or so ago and it came back negative. I have heard though, that the test is not always accurate, so I was never sure that was ruled out, at least in my mind.

Kats – I am glad to hear you've had good results with the steriod shots! That is great! My husband has had several (I think 4 separate times over the past few years) and none of them helped at all. The last time his AP doc did it himself and still had no effect. It was so discouraging.

I will research Lymes again – thanks

[lynnie_sydney]

Dawn – 20 years ago, when no NSAID or DMARD seemed to even touch the sides of the pain, I was given steroid injection direct into the wrist once, in my behind the 2nd time. No effect whatsoever either time. Wonder who did the Lyme labs for your husband? Might be worth looking up the many discussions on Lyme testing and preferred lab through the search function above. 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)

[anewday]

[user=30]lynnie_sydney[/user] wrote:

Dawn – 20 years ago, when no NSAID or DMARD seemed to even touch the sides of the pain, I was given steroid injection direct into the wrist once, in my behind the 2nd time. No effect whatsoever either time. Wonder who did the Lyme labs for your husband? Might be worth looking up the many discussions on Lyme testing and preferred lab through the search function above. Lynnie

Interesting that the cortisone didn't work for you either. Hmmm.

I'm listening to a Q&A on this website right now: http://www.rheumatoidarthritissupport.com/videos/lyme-disease-diagnosis–five-commonly-asked-questions/hDD9K8FiCMs and it sounds very much like Lyme disease is not at all an easy find.

His AP doc ordered the test and uses a good lab from my understanding.

[lynnie_sydney]

Dawn – many past discussions re why Igenex considered by Lyme Literate docs (and patients!) to be the only reliable lab. 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)

[Parisa]

Dawn,

I second the thoughts about having Lyme testing done.  It doesn't sound like the minocin has done the trick for your husband.  My husband had a highly inflamed wrist for about nine months even while on a Lyme/babesia protocol.  It wasn't until he started bicillin (penicillin) injections that he finally got relief.  The damage had been done though and most of the extensor tendons in his wrist and hand had ruptured.  He's recovering now from surgery to repair those tendons.   Sometimes it's tricky to figure out which organism is causing problems and it's only by trying different antibiotics that you find something that will work. 

[Maz]

[user=230]anewday[/user] wrote:

I'm listening to a Q&A on this website right now: http://www.rheumatoidarthritissupport.com/videos/lyme-disease-diagnosis–five-commonly-asked-questions/hDD9K8FiCMs and it sounds very much like Lyme disease is not at all an easy find.

Hi Dawn,

That's my doc in the above link – Dr. S.P, answering the last couple of questions. He used IGeneX labs to test me for Lyme, if that helps.

As explained by these docs, there are many strains of Lyme here in the US…over 100…and some are more “wimpy” than others and some people who have Lyme may never know it. My doc joked about “Lyme health,” rather than Lyme disease in that link. Some strains, however, are very virulent. I think both LLMDs in the the Q & A spoke about why Lyme is a clinical diagnosis…tests may help to confirm a dx, but clinical presentation is of more import. Lyme is very immunosuppressive, so sometimes folk just don't produce enough antibody to test. It's also very much a waxing and waning disease, so when the spirochetes revert to cystic form (cystic forms have diminished outer surface proteins, so the immune system doesn't go after them in the same way as their spirochetal parents), one test in time may not tell anyone anything. No antigen (bacterial proteins) = no antibody to test.

Here is another LLMD talking about palindromic joint/muscle pain syndromes and there being no other disease recognized as causing this other than Lyme. Scroll to Dr. H's video (second from bottom).

http://www.ctlymedisease.org/videoclips.htm

Another tip-off for Lyme is that it LOVES immune-suppression and this may be why the cortisone shots are ineffective. More than couple shots in a year can cause bone destruction, but also an environment for these organisms to thrive. 🙁 

Don't know if this wil help in your quest for your hubby, but hoping you find your answers.

Peace, Maz

[PhilC]

[user=230]anewday[/user] wrote:

He was tested for Lymes about a year or so ago and it came back negative. I have heard though, that the test is not always accurate, so I was never sure that was ruled out, at least in my mind.

I remembered something about Dr. F that I think you should be aware of. When
your husband was tested for Lyme, Dr. F may not have used a reliable lab.

[user=2]Cheryl F[/user] wrote:

Dr. F's lyme test is not one of the reliable tests such as the Igenex test.  When my daughter began seeing Dr. F he used the Igenex test, she tested positive.  Then he switched to doing the test in his own lab, the result was negative. 

I was also a patient of Dr. F, I insisted on the Igenex test, he supposedly agreed, then six weeks later when I had them fax me my results, all he had done was his own Lyme test, it showed negative.  I eventually got the Igenex test (and there was no way I had had a tick bite in the meantime) and I am clearly positive.

I found Cheryl's message on this page:
http://www.rbfbb.org/view_topic.php?id=3884&forum_id=1&page=1

Phil

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

[anewday]

Cheryl is a great help! I am so glad you found that, Phil – thank you!!

Dh will ask Dr. F to do the test again with the I lab instead.

[PhilC]

Hi Dawn,

If I were you, I'd get the kit from IGeneX and make sure that your husband's
blood sample is sent there, and done so promptly. Don't even give them the
chance to accidentally send it to the wrong lab.

Phil

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

[nspiker]

Dr. F. did my Igenex blood test in their office.  They have kits readily available, and will handle everything.  You may have to pay up front for the test, unless you have Medicare.

nancy

[PhilC]

Another thought… First get a hard copy of the test results and find out what lab did the test. It may not make sense to have it done again if it was performed by IGeneX.

Phil

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

[anewday]

Dh said that Dr. F had told him that he was fairly sure he didn't have Lyme because of some sort of symptom that is pretty across the board in Lyme patients. This was well over a year ago and he doesn't recall what that is, but FWIW.

I have to read up on Lyme. We live in the suburbs of Northern CA and dh doesn't recall ever being bitten by a tick or the resulting rash etc. I don't even know if Lyme is transmittable in other ways now or not.

Thank you for so much of your input and help here! This board is truly a blessing to us as we walk this murky path. The help and encouragement are invaluable!

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