Feeling a little lost./Diet?

[Char M]

Lynnie and all,

I've been feeling kind of lost, especially after my last appt. with Dr. F in Sept.09 I thought I was doing well after seeing his associate Dr. L in Aug. (all serum levels moving in the right direction), but he made feel like there has been no progress. He said my RA was very aggressive and we must be equally aggressive.:(

I saw my primary care PA after Dr.F in September and she asked me if he is sure it is RA. She said my symptoms never seemed to fit typical RA. My symptoms tend be be very much tendon related and not symmetrical,(see personal history). When I have asked Dr. F about the tendon issues he just seemed to dismiss them – just part of RA. She mentioned testing me for Crohns disease because symptoms can manifest in the tendons. (I am very grateful that she will listen to everything I bring to her and she is still trying to find more answers for me and hasn't written me off to the exclusion of the rheumatologist!)

Sooo, being the the internet surf-master I am;), I searched out the symptoms of Crohns.
I don't really feel I fit a Crohns diagnosis so I came here to the comfort of the rbfbb to see what I could learn and realized that there are different types of RA as seen in everyone's signatures. Now I'm feeling pretty lost and confused again. What do I really have?!  Some how I found Lynnie's testimonial and thought I was reading excerpts from my own diary. Not that I am self diagnosing, but Palindromic RA makes a lot of sense to me.

I know having a name to call this doesn't change any of the physical manifestations, but knowing I am not alone reaffirms my faith in my choice of AP and is a testament to the power of these boards and all the WONDERFUL people of this community.

So I guess I don't feel as lost as I did. Thank you all.

I can't wait to share this discovery with my PA and to ask Dr.F about it, on my next appt. (which has been postponed due to my employer changing insurance companies at the 11th hour and I'm not sure when I can afford the next appt. and tests.)

As of today, I have been on AP since March of 09, had a very horrible and long herx. Today my overall body feeling is much better, however the tendon issues persist and aren't really any better. My right forefinger likes to lock when I close it to far, I have to push the tendon back in place. The tendons in the ball of the left foot are “rolly”. My right inner elbow tendon has joined in. And most recently the whole left hand  feels “poppy” when I open and close it.

At this point I would love suggestions on how to find the best type of professional to help with a diet, naturopath, dietician ??? etc.  As we all know main stream medicine doesn't really address this and can't offer up any suggestions. I know this must be my next point of attack and I need help getting it all going. ( I have never been a successful dieter).

Thanks for listening to me ramble!

Char

[sierrra]

My RA manifested with lots of tendon issues. Rest (immobilizing the area if possible)and ice can be helpful.

Sierra

[lynnie_sydney]

Char – reading your post brought a lump to my throat! Sometimes we dont realize what writing our journey down truly means to others and I am so glad that it gave you some relief or at least helped you to know that you are not alone. Someone's testimonial on rheumatic.org was what I found googling around in 2001 – and it was the beginning of a big change for me. 

You can read my Personal History thread for the next stage in my journey (re diet etc). My personal opinion would be to look at gluten and dairy as probable major culprits re sensitivity. And in any event, I would reduce my salicylate and sulphite intake as low as possible. Sulphites are really bad for everyone and so much is used as preservative these days, it's quite frightening. If you use the search function above on both those I have posted many times re this – and links are included (I will attach the sulphites one again now). You can also go to a well known AP Doc's site re gluten sensitivity (Dr R.K in Lufkin). [/color]

Re your tendons: I think you are wise to look at some things that might help you along. Also, if they were the first things in terms of symptoms, they are often the last thing to improve on AP.

Finally, you may want to get tested for Lyme (if you havent). Maz will probably chime in here. But Palindromic symptoms are quite common as a manifestation of Lyme I believe. All food for thought – and I hope helpful in your quest for the next stage of your healing. Lynnie    

P.S. For others with palindromic symptoms and who might want to read up on my experience and journey, here is the link: https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html
  

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)

[DragonSlayer]

Hi, Char:

We're neighbors.  I sort of live in Anza albeit gone most of the time now.

I could not find Your personal history, and do not know whether You have been tested for the HLA B27 antigen.

On occasion, I visit this forum and try to find some of the people with AS-related conditions.

very much tendon related and not symmetrical,

  These characteristics are very “AS-like.”  Ok, I also hope that You do not have AS because the diet is the complete exclusion of starches.

Check out the site http://www.kickas.org and others.  In early stages we get morning stiffness, hypermobility, back and neck issues, ribcage pain all asymmetrical.

Good Luck finding a proper diagnosis,
John

[lynnie_sydney]

John – here is the link to Char's personal history thread: http://www.rbfbb.org/view_topic.php?id=3113&forum_id=3

Char – you might want to read John's and see if anything resonates there:  http://www.rbfbb.org/view_topic.php?id=872&forum_id=3

Lynnie

P.S. Char – dont be overwhelmed or discouraged. These journeys are often about us investigating some more, ruling some things out, others perhaps in – and sometimes it's a curvy road to finding the answers. L

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)

[Char M]

Lynnie, Sierra, John,
Thank you all for your responses and encouragement. I know I have been tested for lyme and it has come back negative twice. Or so I was told.

John, yes we are neighbors! I love the drive through Anza on the way to Palm Desert.
As to AS, I will definitely read up on that and you personal history.

Lynnie, Yes I was feeling a little discouraged, but I am still confident that I chose the right road, now more than ever. I can't be thankful enough that I was reading an autoimmune book when there was two paragraphs about an antibiotic protocol that may help RA. That's have I found “The New Arthritis Breakthrough” and it lead me here and to an AP doc. I am grateful I never had to start with all those harsher treatments.

I must get off to work and when I get back there is lot's of reading to do!:)

Thanks again all.
Char

[judy cash]

Char,

I understand how you feel about “is it really RA”, for me I had mostly severe pain, it would just hit me anywhere for no reason, and I would have to stop what I was doing , sit down, and hold ice on the pain only to get little relief. It was so terrible, I suffered over 2 years, before they gave me a diag.. They always said it must be some kind of arthritis, but I would always say, “its not arthritis,because it feels like its in the muscle or tendons”. It seemed  like no one understood what I was trying to say. I was on the internet daily trying to find something that sounded like my symptoms.  Well to make a long story short, when I finally got the diag., and went to see Dr.S in Iowa, I told him I just couldn't believe that it was RA or any kind of Arthritis, because it felt muscular or like tendonitis, his reply to me was that “I hear that a lot”. Even though I was there  in Iowa for AP., I really think it was at the moment he said that to me , that I came out of denial, and realized it really is RA.  Char, AP has really worked for me, I started in June of this year, and I am pretty much pain free since around the first of August. I am sure I will have ups and downs, but for now I couldn't ask for more from AP. There was a post on the Rhumaticsupport site that sounded just like myself also, that I could finally relate to, that helped me to believe. I hope this helps you to know that you have made the right choice, just hang in there.  Take care.

Judy

[DragonSlayer]

Hi, Char:

Thanks to Lynnie, for the link.

The alternating (asymmetrical) hip pains are possibly bursitis related to AS.  If it is convenient, the HLA B27 antigen test could be useful in Your diagnosis.

I have AS and minocycline was not very effective but I did not take the “pelletized” Lederle variety so it may not have been a fair test.  I will try it again, because if it is enough related to tetracycline, it should be helpful.

The antibiotics I require 1) Eliminate the germ Klebsiella pneunoniae (short cycles) or 2) Control the propagation of this germ; long-term use.  What has kept me in almost total remission for over ten years is diet–almost total exclusion of starches.

I believe that if caught early enough–and especially before much NSAID usage–the intestinal lesions can be addressed enough to allow a more normal diet.  In the ten years, I have had good healing and can now eat starches in moderation–but natural ones.  The worst things were breaded and deep fried; once these hydrolyzed and were food for the bad bacterium, symptoms went wild.

Maybe keep a food diary versus pain levels.  You can visit the NSD Forum at KickAS.org, if You think it is appropriate.

Hang in there, I have found very effective treatments for AS (and I do have some verification that they also work for Crohn's, Reiter's, and Behcet's) and there are good treatments for people with RA here.  I'm interested in RBF because AS is one of the diseases treated using antibiotics and I have proven that this is one of the best approaches, but diet in AS is even more important.

HEALTH,
John

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