Saw the doctor today

[JBJBJB]

I went to see my local Rheumy today. He showed me the X-ray of my shoulders, wrists, hands, knees and hips. He said the joints connected to fingers and hands show clear erosion and bad inflammation. He wanted to put me back on those toxic medicine. I told him “NO!” He said I should get those inflammation under the control as soon as possible. He worries about those erosion will get worse…

He also said he did not believe Lyme disease could cause the erosion. Even though Lyme could mimic RA, he believes this is RA. He doubts if minocyclin can do anything about it.

He wants to see me in three months.

:crying:
 

 

[Trudi]

JB–

I can't wait to hear what Dr. C has to say!  Hang in there!!

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Parisa]

JB,

Of course, he doesn't believe that Lyme disease can cause RA because he probably only believes in the autoimmune condition RA.  Down the road when you are better, he will attribute it to spontaneous remission or some sort of miracle.  I hope you can start some treatment soon.

[Kim]

JB,  Try not to let this freak you out, my rheumy told me the same thing when he was refusing to prescribe abx.  I did have early joint damage in my hands that is permanent, but it did NOT get worse when I went on AP.

Trust your gut. 😕

Take care…..kim

[JBJBJB]

Thanks Trudi, Parisa and Kim. I was pretty nervous when I saw my X-ray. It seems a small piece of bone was “missing”…. I was freaking out….

Would hand heat therapy help to reduce the inflammation? I saw people use hot wax. I hope I can get rid of the inflammation or at least reduce it.

10 more days I will be seeing Dr. C. I cannot wait!!! Hope all these mess are from this cute little tick.

:Thanks for the support!!!

JB

 

 

 

[linda]

Cute?! Not so much, evil is more like it. Heat should help, but remember that anything over 20 min will cause too much of an increased blood flow and increase inflammation. Have you tried the capsaicin cremes? It's hard to use on the hands b/c it brns so much if you scratch your eyes, touch your mouth, etc.

I like the idea of the hot wax, altho the effect won't last all day. I forgot, what are you using for inflammation? Maybe MSM ? Idk, I'm just trying to brainstorm for solutions. I wish AP could reverse joint damage.

[lynnie_sydney]

I can feel this is weighing you down, JB. Just hold on a little longer. Kim gave you some really good advice there. Although it's hard, dont let the rheumie get inside your head. He comes from a completely different paradigm to those who believe RA has an infectious origin and, of course, from those who know about and who treat Lyme. He doesnt KNOW. You have come this far and it's not long now till you see someone who DOES know what he's talking about. Stay strong. 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)

[superperroRA]

I see my primary doctor once a month, and he prescribes all my meds. I have no rheumie, thank God . One of the reasons I have zero respect for rheumies is because they tell you, see me in 3 months, you worthless piece of meat.

I would start using a more powerful anti-inflammatory, plus, of course, continue taking antibiotics (minocin and zithro).

I've had a lot of success with the NSAID Voltaren (I'm getting better at an alarming rate). I believe NSAIDs are not as harmful as Methotraxate or prednisone, as long as you protect the stomach with prilosec or using suppositories. (I do have kidney and liver blood tests done every 2 months, and at the first sign of kidney or liver damage, i would stop taking the NSAIDs, but so far my kidneys and liver are happy)

[eann]

Hi JB, I was diagnosed with RA from an MRI of my hands. They showed inflammatory damage to the joints.

The question is, what is causing the inflammation? Keep trying to figure it out. After years of DMARDS and biologics that did nothing but make me sicker, a low dose of doxy helped. That's what got me interested in antibiotic therapy.

Write your questions down and discuss them with Dr. C. He takes a lot of time to answer your questions and encourage you to trust in getting better.

Best wishes, Ann

[linda]

I had an AP doctor who would tell me to come back in 3 months, then would write me scripts for one month, and had an office policy of not refilling rx's over the phone. He was 2.5 hrs away from me and knew my condition, but I still had to drive up there and back to get a piece of paper; did I mention he also charged me the full price for an office visit every time? He left me hanging one weekend with no prednisone-not cool. He also failed to tell me that I needed to be on probiotics, so 10 months later when my stomach was a mess I had to quit AP, and have not been able to restart it since b/c it messes my stomach up so badly. There were other members here who had the same problems with him.

My current rheumy wants to see me at least every 10 wks, and comes in early for pts who need same day appts. When I called his office to tell him that I had pneumonia, he got back to me the same day. He writes my rx's for 6 months and as long as I'm keeping my appts, refills rx's over the phone. He is open to and has some patients on antibiotics, and as soon as I get off of pred and my stomach ehals, he has no problem rxing me minocin if I want it. As I said when I found him, I love him so hard!

But yeah, most rheumies are not inclined to believe in the infectious theory, that's true. Blame their education as much as them, tho. I've had bad experiences with rheumies and AP doctors. I always kinda feel sorry for rheumies, it's got to be tough seeing patients day in and day out that for the most part, aren't getting better. If they have even an ounce of compassion, it's got to get to them. But I get where you're coming from superperro.

[mschmidt]

JB,

I'm sorry you had to go through this-it's scarey and frustrating. The best advice I can give you is what Kim already said…trust your gut. The only reason I see a rheumy at all is because he's Dr. F, and he admits rheumys are the worst doctors. You should find ways to lower your inflammation but, biologics may do more harm than good in the long run. You know that, you're so smart! Hang in there, and reach out when you need to. Wishing you well, and hoping time goes by quickly so you can get in to Dr. C, and start to feel better.

Maria

[JBJBJB]

Thanks for such wonderful support, holding me up from falling apart. I am waiting for my test results. The rheumy ran 9 tubes of blood tests. I bet my ESR is around 40 –50. Anxiously to see.

Thanks for suggesting MSM. I will need to consider this option after seeing several patients' inflammation level went down. I will see Dr. C soon and I will definitely ask him about it.

I really hate this disease! I have to cancel out my lecture to a group of graduate students in Columbia, MO, due to my voice inflammation. I am really getting anxious to get better!!!

Hugs,

JB

 

[Kim]

Hang in there, JB.  This is a s-l-o-w road to wellness. :doh:

Take care…..kim

[nspiker]

JB,

So sorry you are dealing with all of this…just hang in there, we're all here to support you. 

I have to chime in with something about the traditional rheumie I used to see, before AP.  He is a fantastic, “best of”  rheumatologist, and has a PA that would also see patients because of his heavy patient load.  This PA went on medical leave for two months a few different times.  I never knew what she had, or why she was out sick.  She was his trusted teammate, and he would always send a letter to his patients letting us know she would be out for a while.

Months ago, when searching for the right doctor for lyme or multiple infections, saw a rheumatologist/integtrative medicine doctor that I really liked.  Probably would have stuck with him, but he was not completely lyme literate, although he was on the CALDA list.  I was sitting in the lobby, waiting for my appt., and overheard the doctor saying something about Michelle from Dr. K's office.  I asked the receptionist, is that “the Michelle” from the other rheumie's office?

Come to find out this PA had lupus and some autoimmune issues, and she was the patient of an integrative medicine rheumatologist, not her own famous doctor that she worked for.  I couldn't believe it!

Now you know, when it's YOUR health at stake, the same rules don't apply.  She wasn't going to put her trust in traditional medicine and those dangerous chemo drugs….

So JB, you're on the right track, just have patience a little longer. 
nancy

[mschmidt]

Nspiker,

What an uplifting story–thank you for sharing that with us!!

Maria

[Author]

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