Saw the doctor today

[PhilC]

JB,

You do know that you need to keep the inflammation under control, right? If you don't then the antibiotics won't be able to penetrate into every place that they need to be.

If you want to make your rheumy happy (even if only a little), you could ask him if you could try Plaquenil. Now, before you balk at that idea, consider that it will do double duty. Not only will it help with your inflammation, which is what it's normally used for (in cases of rheumatic disease), but it should also make your little Lyme critters sick. 😀

Anyway, I just thought I'd put that out there for your consideration. Your LLMD may put you on Plaquenil, in which case it would be unnecessary to ask your rheumy for a prescription. If not, it's an arrow in your quiver that you may want to pull out and use at some point (with your doctor's help, of course).

Phil

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

[Kim]

[user=1429]PhilC[/user] wrote:

Anyway, I just thought I'd put that out there for your consideration. Your LLMD may put you on Plaquenil, in which case it would be unnecessary to ask your rheumy for a prescription. If not, it's an arrow in your quiver that you may want to pull out and use at some point (with your doctor's help, of course)

Our Lyme doc does use Plaquenil in the Babs protocol. 😉

Take care…..kim

[shannonjoy]

It is disgusting what I am finding out about Rheumies too. So I have seen 3 different people in my local “specialty” clinic..or so they call themselves. I have been met with ZERO compassion, no listening and a rush to get my on drugs with all of them. I tried to convince them they had my diagnosis wrong as they were saying I had A.S. (I knew my back pain was different since it was sharp and stabbing and I had just had a baby). One of them said, it was too early to tell if the back pain was from baby and the other said there was no way the back pain could be from childbirth (since it was 5 months ago!) Sure, doc, you must know because you have pushed an 8 pound bowling ball through your pelvis region, I'm sure!!!!!!

Anyway, I saw the last Rheum on Feb 24th, it was a woman and I thought somehow she would have more compassion and would listen to my entire history which would indicate Reactive Arthritis. She did listen and she did change my diagnosis to Reactive Arthritis. And then she looked and me and said I was in denial and if I didn't get on Humira I would end up in a WHEELCHAIR!!! I said, wait a minute, the literature says Reactive Arthritis goes away and may flare up on occasion but not as severe. She said NEVER. She then said the Celebrex I was on was not the appropriate drug and wouldn't do anythign to help me. To which I said, but it is helping and plus I do think this is going away because I feel like 60 percent better. She said the disease just fluctuates and the atmospheric pressure can affect it, among other things but it certianly doesn't go away. She said go home and read this and decide if you want the risk of the drugs or to not be able to take care of your kids (2 1/2 and 7 mo) Stab me in the heart.

Interesting thing. I go home and read the stuff she gave me. Which matches all the other stuff I've found. Here are the lines of treatment. 1. NSAID such as Celebrex (SHE LIED). 2. Antibiotic if an infection is found (THEY DIDNT TEST FOR INFECTION) 3. Injections if it's long term and chronic (I AM ONLY 5 months in-hardly long-term at this point). It also says, while this condition typically clears up, you should seek treatment during the flare. And discuss with your doctor stopping medications once your condition has cleared. So, this hardly matches what she adimately told me. Also, the Rheum (in the same clinic) who saw me the previous month and was convinced it was A.S at the time told me the NSAIDS are the first line of treatment and if they work, that is great. So she LIED!

Ok, so that's not even half of it. After that I discovered AP and this board. Prior to that (Feb 3) I saw a kind, caring chiropractor who treats a lot of people with autoimmune and many other conditions. He does Applied Kinesology orMuscle Testing. His muscle testing confirmed that I have an outer bladdar infection as well as a viral infection. He is treating me with natural supplements that help your immune system beat the bugs and also eventually get rid of all the toxins (cell die off ) from the bugs. So I started feeling better after a week on the treatement. And each week was better and better. I could not believe it!

And that's when I saw that horrible female Rhuem who told me I was wheelchair bound. She gave me a setback and I have been having a minor flare ever since. I called my chiro and he reassured me that many people start feeling better and doing more so they may have little relapses. He also described the process of cell-die off and how the immune system works. I believe this is similar to Herxing.

OK, so to get the real disgusting make you wanna vomit in your mouth truth. My friend is a nurse in a hospital about 3 hours from where I live. I had recently told her my story and what the lady Rheum told me. She said we have a really nice Rheum that works here, you should come see him. He is the sweetest,kindest most compassionate man. His waiting list is like 6 mo though. I said, well, I don't plan to need one but maybe.

She calls me the next week out of the blue and says, you will not believe this! The Rheum she spoke of was a patient of hers in the hospital. (he had some type of parasite from travelling out of the country so was in just for that). So because she knows him a little, at the end of her shift he went to say goodbye and asked him about Reactive Arthritis. He told her all the info about it and hten asked what her question was. She told him what this Rheum had told me. He said, “I bet that was Dr. X. She said, well I don't know but it was a female. He said, yep that's her. She is horrible. The whole clinic (the one i have had such a horrible expereince at) is horrible. He gets tons of patients from our town trying to get in with him because they are so uncompassionate,don't listen to patients,ect.

Then he went on to say this: The sad truth is that these Docs get HUGE kickbacks from the Pharm Companies when they get people on these drugs. He said they really push the injections because they get so much in kickbacks. And if they can get you on them, you are pretty much hooked. He said, usually they start with Methotrexate and then about a month later say, oh it's not working and then they get you hooked on the big guns. He said it's a vicious cycle once you are on them. He said this woman (that I saw) is the worst of them all and is really money hungry. He said he's gotten many of her patients that she told the same thing (wheelchair threat) which wasn't true. He told my friend to tell my if I had Reactive Arthritis it usually does go away and in less than 10percent of patients is it longterm. He said Celebrex would be appropriate for this. He then said, tell your friend, “DO NOT GO ON THESE DRUGS as it is a vicious cycle and it's very hard to get off”. He said that he is a christian and believes it is wrong to give these drugs for kickbacks. He says his money is Gods money and he was given a gift to help people. Of course, I'm sure he uses the drugs when he needs to but he doesn't try to hook every patient on them.

I WAS IN SHOCK!!!! I mean, to have another Rheumatologist say this is unbelievable. But he had no reason to lie about this and neither did my friend. I would like to switch to this guy but he is 3 hours away. I may still do that if I need a Rheum but at this point I am getting better and plan on not needing one anyway.

How sickening is this! It's all about the mighty dollar! This should be uncovered but I don't know if that's even possible. The BIG drug companies run the show and this crap is probably all done under the radar. It's also hard to prove when all the studies are sponsored by the drug companies. Another person (a chiro who is a friend of ours) said all the MD continuing Education is sponsored by the Drug Companies so go figure.

So so so sad. But I need to get well and if I focus on this too much I will stay stressed and stay flared. I'm actually going into counseling to help me deal with this! Ahhhhhh.

Well, I just wanted to share. 🙂

p.s. sorry for all the spelling errors.

[JBJBJB]

I will check out the MSM. I tried to avoid taking the plaquenil all these time. I don't mind taking it for a short term.

I got my blood test results back. I have not read it carefully. Most of the tests are normal. However my rheumatoid factor, which had been normal, now is 148 units. I believe 20-60 units are considered normal. My urine test showed a rare bacteria. I don't know what it is, so I may get it tested again.

My rheumy did not test my ESR. Very strange. To my understanding RF could mean a lot of things other than RA. I am sure I am developing RA now.

 

 

[shannonjoy]

Sorry JBJBJB-
My comment really didn't fit on your orig. post! I was sorta resounding what Nspiker was saying. I should have done it on it's own thread! 🙂

I will say though that my Rheumy at the last visit did an xray of my hands and feet (a couple of sausage toes and then 2 knuckles swelled on r. hand)
and I am guessing she is planning to do the same thing with me at my next appt. To tell my how horrible my damage is and that I HAVE to get on drugs STAT!

Too bad for her I'm not going to the next appt! I will just take the x-rays with to see my kind chiropractor/muscle tester as we work on my healing. He says that it is possible for damaged joints to heal. Just like broken bones! That is what the body does-heals! The lady who referred me to him, had a fused spine from AS when she first went to him. Now her spine is totally unfused! Imagine that! Our bodies can work! Just don't tell a Rheumy that!

Blessings!

[JBJBJB]

[user=2107]shannonjoy[/user] wrote:

I will say though that my Rheumy at the last visit did an xray of my hands and feet (a couple of sausage toes and then 2 knuckles swelled on r. hand)
and I am guessing she is planning to do the same thing with me at my next appt. To tell my how horrible my damage is and that I HAVE to get on drugs STAT!

Too bad for her I'm not going to the next appt!

 

Shannon,

I am glad you have another health care provider you can lean on. My local rhuemy is a very kind person. As for AP treatment, he has open mind with a lot of question marks :roll-laugh:…. he does whatever he can to help me to get better within his power. He works for this It limits him to be “creative” you know what I am saying. I am sure he would prescribe me the IV if he could. Unlike the other rhuemy from an university medical center, he just shut me up whenever I talked about AP. [/color]

When my local rheumy saw some possible erosion on my hands, he really cared and worried about me. That freaked me out. I told him I was heading for Missouri to seek Lyme treatment. He told me to go back to visit him in 3 months to see how this Lyme treatment will work out. He tried to convince me to go back to the medicine he suggested…. I will not go back (except plaquenil).

JB

 

 

 

[JBJBJB]

[user=1552]nspiker[/user] wrote:

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!

Thanks, Nancy. this story reminds me of that Progressive car Insurance commercial. You know what I am talking about.

I am not giving up. Like APbeliever, I was shocked. I did not control my inflammation level well after I stopped plaquenil and prednison.

On the bright side, I looked other blood test results, the ANCA IFA is normal. This means the vasculitic syndromes of ANCA are normal, i.e. I don't have Wegener's, Churg, SLE, and Sjogren's. From another test two years ago, my Sjogren was positive. I hope the clindy IV took care of it because I had Clindy in late Jan.

:JB

 

 

[APbeliever]

JBJB, actually I was able to control my inflammation. My ESR was always around 18~28 (pretty low) when I personally told my Rheumy that I needed to get ESR test done. He always insisted on CRP tests and AntiCCP tests since he regarded them as giving an accurate picture. I know when I first got RA, he immediately sent me for a CRP test and it was around 13.5. After using MTX and Prednisone for a few months, he finally did an ESR test (18) on my insistence . I requested also a baseline xrays for my fingers and toes but he blew my request several times. Finally, another rheumy from a top medical university agreed after I kept insisting on getting this test. The top medical university rheumy blew my suggestion that I even had RA. He ridiculed Dr B's AP treatment. I am sure after getting the xray results, he must have changed his mind. I am also using MSM (around 5-6 grams a day) to control my inflammation and Boswellia serrata as well as Mino 3 times a week. I am able to even exercise and walk with a little pain here and there. No stiffness in my hands or feet whatsoever with this treatment. I was just shocked to see erosions and osteo.

[shannonjoy]

JB- I'm so glad to hear you have a kind Rheumy who is willing to let YOU make the decisions in your healthcare! Amen to that!

[APbeliever]

Yeah JB, I wish more rheumys were more caring like yours.

[JBJBJB]

[user=1212]APbeliever[/user] wrote:

After using MTX and Prednisone for a few months, he finally did an ESR test (18) on my insistence . I requested also a baseline xrays for my fingers and toes but he blew my request several times. Finally, another rheumy from a top medical university agreed after I kept insisting on getting this test. The top medical university rheumy blew my suggestion that I even had RA. He ridiculed Dr B's AP treatment. I am sure after getting the xray results, he must have changed his mind. I am also using MSM (around 5-6 grams a day) to control my inflammation and Boswellia serrata as well as Mino 3 times a week. I am able to even exercise and walk with a little pain here and there. No stiffness in my hands or feet whatsoever with this treatment. I was just shocked to see erosions and osteo.

Today I came back to review and re-read everything you guys wrote above, so I can hang in there, not to become disappointed.

I went to see my favorite rheumy again today to check my liver and kidney. He was very frustrated when he saw my swollen hands, feet and great pain on my wrists, shoulders and fingers…. I knew he really cares for me, does not want to watching me going down hill… he wanted to put me on MTX and prednisone. He told me, “you got RA now. It's RA!!! No longer MCTD!!!”  He told me he no longer wanted to run any blood tests Dr. C ordered for me.

He got upset about the Lyme disease theory and he believed I was fooling around with a quack practitioner…. it was very frustrated. He ordered more X-ray for my hands and chest. He said my lungs still have the same cracking noise, no improvement even though I told him I felt a little better. He said since 2008, he did not see any improvement on me but keeping going down hill. He is sending me to see a Hematologist for my low protein S problem.

I hope he wasn't right. I really hope I can get better soon. I am at the very low point today, with a lot of fear, just wanting to cry. 

Thanks for letting me rambling.  

 

[lynnie_sydney]

JB – I am so very sorry to read that you are still in physical distress and now emotional distress also. Who to trust? Who to believe?

However, it is not unusual for even doctors who share the same paradigm to disagree about what's going on and/or how best to treat it. This is true of many health problems, not just autoimmune diseases. That's why people seek out 2nd, 3rd and sometimes more opinions. It's not difficult to understand how much greater is the disagreement when docs approach illness from completely different paradigms.

Perhaps you need to make contact with Dr C's office and tell them the kind of bad shape you are in and that you'd like a phone consult with Dr. C.  Does Dr C do telephone consults? If not, can you arrange to go and see him? Can you perhaps have a dialogue via PM with someone who sees the same Lyme Doc as you? (Is this the doc Kim sees?)

  [/color]

 

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)

[Kim]

Hi JB,

I'm sorry you had such a disturbing visit with your rheumy and he left you so confused.  Dr. C. does do phone consults (you'll get a bill :?), which I would recommend a.s.a.p., and tell him what the rheumy said.  His insights may be helpful.

Try not to get hung up on the “labels” of a diagnosis because if you see three doctors, you'll likely come away with three different diagnoses.  My official diagnosis is MCTD with SD and RA and Lyme.  Everything has gotten better using antibiotics and I fear where I'd be today if I'd taken MTX and Pred.

You have to have confidence in your doctor and the treatment plan so I wish you the best in sorting things out to come up with what's right for you.

Take care…..kim

[JBJBJB]

[user=40]Kim[/user] wrote:

Hi JB,

I'm sorry you had such a disturbing visit with your rheumy and he left you so confused.  Dr. C. does do phone consults (you'll get a bill :?), which I would recommend a.s.a.p., and tell him what the rheumy said.  His insights may be helpful.

You have to have confidence in your doctor and the treatment plan so I wish you the best in sorting things out to come up with what's right for you.

Kim,

I got call back from his nurse, telling me to stop Flagyl as soon as possible. I was told to move to the next antibiotic which is muscle injection. I will have to figure out how to do this. Hate shots.

Thank you, Lynnie, Kim and Maz, for helping me think it through. I hope this next antibiotic will hit the target.

JB

[Author]

Posts