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hello I am new to Road Back.
I have been diagnosed with RA a few years ago, and because it was “manageable” I did not take medication, Just kept a good diet and learned how to pace myself. I would get flare ups, different areas, gravitating from fingers to wrist, toes to ankles, shoulders neck etc.. and then it would go away. Two year ago, when the pain became more intense I decided to take Hydroxychloroquine (200) but my eyes were effected, I was developing renal toxicity, so i stopped it.
Two months after I stopped the medication my symptoms seem more aggressive and last longer, and the pain , when there, is more intense. What is puzzling me though is that also my fatigue is worse, It is as if I have the flu, every muscle aches, sometimes my body feels tingly, and i am short of breath. I have no energy at all. I assume that this a big part of RA, yet I am confused as all the rheumys I see tell me that these symptoms have nothing to do with RA and tht i need further testing (ie cardiologist etc…) They are only concerned with the joints whereas I feel as if I am being attacked and not just in the joints.
THis is why I strongly believe that RA is an infection!! I just feel sick. I assume this is part of the picture??
I am reading Scammell now, and spoke to my GP in London, where I live, who is willing to put me on a course of doxycycline.(He plans on testing me for mycoplasmal antibodies). I referred him to Roadback foundation and the physician’s protocol.
I guess I am reticent about starting AP a bit blindly, but if he starts me on a low dose it might be alright and it might help with this overall feelings of not being well.
I think I just feel confused and a bit isolated and not sure if I am proceeding the right way. Just writing this already makes me feel better and less isolated. So thank you for this, and thank you for any thoughts you might want to share.
LorenaLorena,
You are definitely moving in the right direction with your thoughts and choices. Others much more qualified than I will contribute to your post – but just quickly, I wanted to acknowledge it and let you know that the AP protocol is one of the most moderate, yet apparently succinct methods of treatment I have found. The brain fog/exhaustion was most definitely connected to the RA activity in my case and as my diet improved along with the drug-assists…it cleared. I hope that puts your mind to rest at present.
Oh, also – posting and sounding out your challenges and how you’re addressing them is a GREAT therapy as well. It helps to organize your “attack” on this, and help formulate your resolve to the direction(s) you will take.
Welcome, and (unfortunately) I FEEL for you!
Dawn
DawnF
Welcome to the group!
I think everyone’s RA take a slightly different course… please keep reading the book- read it several times if you need to. This method is definitely worth a try… We’re all here for you- please keep us posted!
Hi Lorena
and another welcome from me to Road Back Discussion Forum – you will find alot of support here and a wealth of experience.
The fact that your symptoms (sx) came and went and migrated to different parts of your body – shoulders, neck and larger joints being involved, is much more typical of Palindromic RA/rheumatisim than classic RA. Coming and going and extreme pain during attacks is very typical of Palindromic. Mine were excruciatingly painful for 3/4 days (joints and particularly tendons), coupled with a crushing fatigue and then, when it went away, absolutely ‘nothing’. A link to my original story is in my signature. I agree, the Scammell book was the very first thing that made any real sense to me (nothing I was told by conventional docs did) and it truly ‘switched on the light’ for me.Incidentally, Palindromic RA is an extremely typical way that Lyme Disease/Borreliosis manifests. Have you ever been tested? If no, it may be very worth you doing this – and the recommended lab for the most accurate results is Igenex. If you are LD positive you will be better to find a Lyme experienced doctor (LLMD) so it would be good to rule it in/out.
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)Thank you for your support!!
I already feel better knowing that I can be pro-active and more informed with the help of Road Back.
Lynnie, you were in fact the first testimonial I read, and I did find my patterns to be very similar to yours in the beginning. I am so encouraged by everyone’s story and road to recovery. Brown’s own journey demonstrating incredible determination and integrity also fills me with hope for the medical field who need more like him.
I was wondering about a couple of things. 1- whether I should have some lab work done through the Institute for Molecular medicine ( i believe one of the links) for Mycoplasma/Chlamymdia?? Does it matter??
2 – I also noticed a link on root canals as a possible culprit. Interestingly, I had a root canal redone twice because it never felt”right”. I had the original root canal done in fact shortly after getting very ill with a chest infection . And the truth is I never felt the same since. And had it redone the same year I started with mild RA symptoms.
I think perhaps those two things could easily be contributing factors for systematic infection-
I am now thinking of getting my root canal removed after I start on the AP – I am in the process of gathering info for my doctor here in London who, as i mentioned, is willing to put me on doxycycline.
Thank you for any insight on root canals and whether lab tests would be helpful???
Lorena
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