On the road again

[debc]

Hello,

I am new to this BB and this is my first time posting.  Jan 09 I developed severe knee and shoulder pain and swelling.  At one point they thought I had a DVT because my right leg was so swollen down to the ankles.  An ultrasound determined that I had a Bakers Cyst.  The tech performing the exam told me that an inflamatory condition probably caused this.  Around the same time I asked my GP to draw lab work.  I had a C Reactive Protien that was very high (314) and a very slightly elevated   RH factor (maybe 2 points above the high end).  I was referred to a Rheumatologist and thus began the drive into several brick walls.  I saw a Rheumy in Chicago and St Louis who offered nothing because my x-rays looked fine.  In the mean time I am experiencing sever pain in my knee, left hip and shoulder joints.  My muschles are extremely aching. and very weak.  Large doses of Advil do not help.  I am then sent to the Mayo Clinic and that was the biggest shamble to date.  They eventually did a joint scan ( to prove to me that I was OK and just a whiner) and guess what – inflamattion everywhere.  I then recieved MRI of my rt knee and ft hand which all showed chronic inflamation.  I was sent home with a plaquenil script and no info, diagnosis or follow up.  While at Mayo I read about Dr S and had an appointment but got snowed in and could not travel on the east bound road to see hinm (this was in Jan 10).  Eventually about 2 months ago three of my fingers are hugely swollen (rheumy called tyhem sausage fingers) and they hurt terribly.  Anyway, I am on my way to see Dr S and hope that he can help.  My appointment is at 9:30am and we are still on the road.  I am terrified that he will think I am crazy like all of the others – it's so discouraging when you hurt so bad and are swollen up like a blow fish and no one cares or believes you.  It's my bad luck that I have a job and a career  I feel like I would be better off if I did not try to work and act normal.  Wish me luck because I am at the end of my straw.  I hope he is nice.

Deann

DX: sero-negative arthritis, Diabetes Insipidus, panhypopituitary

Tramadol

Mobic

Growth Hormone

DDAVD

Synthroid

Testosterone

[mkbeeliever]

Deann,

Let us know how things go with Dr. S!  Glad you are going to see him. I am sure he'll help you!  He's helped my mom via email.  We've not gone to see him but I have emailed him and my mom's Dr. has spoken to  him.  He's very kind, I know you'll like him a lot!

Blessings,
Michelle

[Trudi]

[user=2410]debc[/user] wrote:

I am then sent to the Mayo Clinic and that was the biggest shamble to date.  They eventually did a joint scan ( to prove to me that I was OK and just a whiner) and guess what – inflamattion everywhere. 

Hi Deann-

Good luck on your journey to health.  From my own experiences, Mayo Clinic is way overrated and I would not recommend them to anyone.  When they don't know what the problem is, then it must be the patient–as in it's all in their head.  For me it ended up being Lyme.  Took a long time for the correct diagnosis.

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?

[JBJBJB]

Deann

I could identify myself with many of your symptoms. I also went to see Dr. S in Iowa. After a year on minocyclin, I realized it did not work well, except Clindy IV and zithromax which made me feel better. I later realized both of these medicines are also for lyme disease.

Later last year, I took an Igenex lyme test and I was tested with two salient positive bands and one band borderline positive. I took a confirmation test, it came back positive. So I traveled to Columbia, MO to see Dr. C for Lyme treatment.

Right now I am on lyme disease treatment.

Hope your visit with Dr. S will go well.

JB

 

[Parisa]

Deann,

Reading your symptoms definitely made me think of Lyme disease.  Dr. S is not a Lyme doctor but he will get you started on an antibiotic protocol.  So, seeing him will definitely be a step in the right direction.  Meanwhile, start looking into maybe getting a Lyme disease test through Igenex and look into finding a Lyme doctor.

[debc]

Thanks everyone for the feedback and support.  It's good to know that you are not alone!!  The visit went well.  Dr. S put me on Minocin po 2X day.  I will look into the Lyme test, Thanks for that advice.  I'll keep you guys posted.  I am hoping for the best because all of this pain and fatigue is getting old!!

Deann

 

[justsaynoemore]

Deann – what a great healthy attitude you have!  I am so glad the trip went well and you start feeling better soon.  Don't go away, we need you and you need us.  Take care ~~ Cathy

[JBJBJB]

[user=2410]debc[/user] wrote:

I am then sent to the Mayo Clinic and that was the biggest shamble to date.  They eventually did a joint scan ( to prove to me that I was OK and just a whiner) and guess what – inflamattion everywhere. 

I am glad the visit went well. I am glad I did not go to Mayo. Every one wanted me to go there. I was surprised Mayo did not recommend you have Lyme disease tested. I did go to see a well know rheumy in Chicago (of NW University). He was not totally against minocyclin but he wasn't supportive.

When you are on minocycline, make sure to stay away from sun. If you decide to have a lyme disease tested, I read it's more accurate if one is not on antibiotic for at least 2 weeks.

 

[Healer]

:blush: Hello All!
I am brand new to this forum. I just spoke with Dr. S. this a.m. and he does not believe in testing for these auto immune disorders as tests are not conclusive. He feels the antibiotic treats the Lymes by default. So what have you learned about treating the Lymes? You were on the antibiotic and never felt positive results? For how long?
Thanks for the info 😉

Joy,
Cheryl

[nspiker]

Cheryl wrote:

He feels the antibiotic treats the Lymes by default. So what have you learned about treating the Lymes? You were on the antibiotic and never felt positive results? For how long?

Welcome to RB! 😀 Are you currently on AP (minocycline or doxycycline)?  Tell us a little more about your story. 

As far as lyme goes, it cannot be treated with single antibiotics like AP, unless it is caught immediately after a tick bite.  AP does not cover lyme and co-infection treatment.  Usually numerous antibiotics are used, and switched to cover all the aspects of treatment.

nancy

[Healer]

Nancy Thanks!
I have done nothing conventional……did go on LDN 1.5 yrs ago. I have been treated by a Chiro who has had much success with autoimmune diseases. I went into a storm 2.5 yrs ago and was very disabled. Went to various supplements (incl elderberry and 15000 dry D3 a day), organic juicing and eating. Plateaued, did hypnosis for another level which plateaued, felt so much better so I slacked off the hypnosis (I'm my own worse client) and “cheated” on eating. I did X country short time 5 times this winter for the first time since the disability. YaHoo!!!!!
I have begun to get worse I think in last few months -feel low and hands/wrists worse. Lots of histamine, inflammation. Now exploring the antibiotic route. Now also question Lyme.
Tell me more about the treatment for Lyme and RA. Dr S Iowa feels both get results in the minocyclin treatment.:D

[nspiker]

Cheryl,

Welcome to RB, the board of rebels :cool:.  All of us are going against the grain with AP (or lyme) treatment, so you'll fit right in! 

Starting with Minocin is the best way to go on AP.  Minocycline is a very benign drug, and great for treating RA.  Generic minocycline brands, Teva or Watson is what is recommended, or ordering from Buylowdrugs in Canada, for the pelleted brand name Minocin.

Do you have any reason to suspect lyme?  It doesn't hurt to get tested, and you can save yourself time, if this is your ultimate diagnosis.  You can order a test kit through Igenex, and any doctor can draw the blood and sign off on the test.  Test #188 and #189 are the basics, and a good place to start for $200 out of pocket. 

Dr. S. is a fantastic doctor, but he is not lyme-litterate.  It's probably best to take things one step at a time.  He would be a great place to start with AP treatment. 

nancy

[Healer]

Once again thanks for the info…..I've got it in my file now!!!!
Nothing specific on Lyme, but I questioned this earlier. The Chiro said yesterday that because my symptoms are not following the RA typical path, and because of a seemingly “jumping around” path lately, maybe I should get tested. I've learned so much, but I have so much more to lean. My chiro treated a patient of Brown's who had t get off the Tetracycline and went into a terrific storm. He is hesitant on this treatment.
He says I am his most resistive patient……..:doh:
I'll beat it I know. This is my next quest.

Joy,
Cheryl

[Maz]

[user=2422]Healer[/user] wrote:

Once again thanks for the info…..I've got it in my file now!!!!
Nothing specific on Lyme, but I questioned this earlier. The Chiro said yesterday that because my symptoms are not following the RA typical path, and because of a seemingly “jumping around” path lately, maybe I should get tested. I've learned so much, but I have so much more to lean. My chiro treated a patient of Brown's who had t get off the Tetracycline and went into a terrific storm. He is hesitant on this treatment.

Hi Cheryl,

Very nice to meet you and just adding a welcome to Nancy's post to you and seconding everything she said re: IGeneX testing. Minnesota is pretty Lyme endemic and the waxing and waning way in which you describe your RA-like symptoms is pretty classic. If you can get your testing kit and a local doc (maybe your chiro?) will sign off on the lab tests, you should get your results back in two to three weeks.

Road Back retains a list of LLMDs (Lyme Literate MDs) across the US, so we can give you a list of in-state docs if you should need it. Dr. S. is a truly wonderful AP doc, but unfortunately he's not Lyme Literate. Ticks pass more than borreliosis and all the other coinfections need to be assessed and addressed separately by a doc who really knows what they're doing. Babesia, for instance, is a protozoan infection that is really tough to beat, with many strains. A 5 day series of clindamycin IVs wouldn't have much effect and treatments for babesia usually go on for months…sometimes in rounds if it comes back. It's a bit like malaria in that regard and likely why plaquenil works to such good effect in the field of rheumatology. Plaquenil was originally designed to treat malaria.

Hope this helps, Cheryl, and glad you found us! 🙂

Peace, Maz

[Healer]

Hello Maz,
Good info. I'll let you know what happens.

Joy,
Cheryl

[Author]

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