I've posted similar questions on both the lupus and arthritis forums...I'm trying to find out if anyone has a diagnosis of "undifferentiated arthritis", that is lupus-like, suspicious for SLE or seronegative RA...it all started when I awoke on July 1, 2010 with symmetrical polyarthritis of the fingers, hands, wrists, and toes/feet...the only abnormal bloodwork I've had since then has been highly positive ANA of 1:640 and highly positive TPO antibodies...from August 2010 to present I've been on prednisone from 5 - 40 mg per day along with a bunch of other meds to try to control the persistent arthritis (mainly in my fingers, hands, and wrists)...I failed on max dose of methotrexate by injection so my rheumy switched me to max dose of Imuran (150 mg per day) in Jan 2011...that didn't seem to do the trick (even on 20 mg of prednisone per day) so my rheumy put me on Humira in late April (a bit controversial & risky for SLE patients since it can cause lupus in RA patients, though that is still fairly rare I think.), which has been helping...but I still had feet/toe pain with metatarsalgia so we added Celebrex and low dose Eliva (for insomnia & chronic pain relief)...was also diagnosed with GERD & Barrets esophagus in the middle of all this (kind of strange since I don't have the typical risk factors for it; GI Doctor said I must have had the GERD for years in order to already have Barret's esophagus, so I can't blame that on the prednisone, though am sure it made the GERD worse)...so I am on a lot of arthritis meds for an SLE patient (prednisone, plaquenil, imuran, humira, celebrex) along with nexium & Zantac for the GERD and low dose elavil (TCA) for the insomnia and chronic pain issues, but I still have NONE of the bloodwork indicating RA...and if I do have SLE causing severe lupus arthritis, wonder why I still have negative DS-DNA and NONE of the other lupus related antibodies? It's pretty strange, BUT I'm grateful my Rheumy is taking my "mystery" systemic autoimmune connective tissue disease seriously and treating my persistent arthritis as best as we can at this point in time...and believe me, I was never a pill popper before July 2010 - took only vitamins and was in excellent health...oh yeah, another clue to my "mystery illness" is that I took Bactrim before my big flare in July 2010, and I've read that Bactrim can trigger SLE (pointing more towards that than RA, unless it can also trigger that or other autoimmune CTDs?)...would love to find someone out there with severe inflammatory arthritis but few abnormal blood markers (other than my 1:640 ANA and highly positive TPO antibodies that make me likely to get hypothyroidism some day I hear)...please write back if you have any ideas what my "mystery" disease might be! In the meantime, I'm still taking it one day at a time dealing with the chronic pain & fatigue...best wishes to all out there....
Welcome to the forum.
Sorry for all your suffering.
Nonetheless, I will make an attempt to offer you something useful,
after having reviewed your post.
It may be a long reply though, as I've noticed a few significant pieces of information that I need to expand on.
SLE diagnosis is based on a number of criteria. Your dsDNA is only one measure whose values are changeable, so by itself, it becomes less meaningful for diagnostic purposes.
Negative blood tests also cannot rule out RA as it they are not confirmatory diagnostic criteria on their own.
As far as your diagnosis of GERD, Barrett's Esophagus may be present at birth, with no connection to GERD at all, thus the total absence of GERD symptoms. Not typical but, very possible.
What other criteria where confirmed present to arrive at this diagnosis by your Gastro? Have you done the HCL test or other tests for GERD?
Bactrim may indeed be the trigger-as you suspect -of the onset of your
SLE/RA like condition(s).
It's main function is to inhibit Folic Acid synthesis in bacteria,
however, the so-called "targeted" attack also affects the activity of the mitochondria in the otherwise healthy cells, rendering the immune system vulnerable , free radicals and other toxic agents unchecked.
Bactrim can inhibit the production of an enzyme, vital in the synthesis of
Glutathione and Cysteine molecules. Glutathione is the body's Master Antioxidant and one of thevery few agents able to keep the JNK gene inactive.
JNK prolonged activation WILL lead to serious and chronic disease.
Glutathione levels are used by many scientists as a health and longevity
Also Nitric Oxide synthesis is compromised, whose role is to support the immune system and destroy fungal infectious agents, mycotoxins , viruses and mycobacteria. There's more, but you get the idea.
Not everyone gets affected the same, however, people with certain predispositions genetically or otherwise, or with serious deficiencies and imbalances or UNDETECTED infections, may suffer the consequences a lot more than others.
(In clinical studies, the integrity of the findings are unfortunately compromised frequently, to downplay negative results and overplay positive results instead. Data can be manipulated many different ways
and at the end of the day, because of this, many people are taking perhaps some medications -approved by FDA or Health Canada- that will change their lives forever. And that is not for the better.
Just my personal opinion.)
Having said - or rather typed -all this, I think you need to make a fresh start.
My suggestion is to take a dual course of action.
Starting immediately, you may want to take the necessary steps toward
strengthening immune system. I understand that this may be a very challenging task, considering your symptoms and medications to manage them. You may need a health coach, to help you make this transition, gradually and safely weaning you off some of your meds -in co-operation with your doctor- and replacing them with appropriate holistic/alternative ways of treatment. Probably an experienced naturopathic doctor will be best suited for such a process.
The second part would consist of serious diagnostic work, to be handled by true experts in the medical field, who have experience and knowledge
in the detection of "undetectable" initiating or underlying infectious conditions. The Rheumy you see is probably -as good as (s)he is- not familiar with this.
My suspicion is a pathogenic multi-systemic infection,
such as Lyme/ Borrelia or Pathogenic Mycoplasma, or both, as the Lyme
tick usually carries the pathogenic Mycoplasma as a co-infection.
They all are very opportunistic, very evasive, and invasive at a time of
weakness and imbalance or shock or trauma. Otherwise, they can just exist in a dormant state within the body for decades!
Initially you could ask for a blood volume test. At 10-35% lower blood volume ( normal is 30ml/Kg- red cell mass in ml to body weight in Kg.)
that would be a "red flag".
Also a 24H Holter ECG test would be useful. The clinician would be looking for abnormal T-wave patterns, instead of peaks there would be valleys and declines. These are only indicative-not diagnostic tests.
Should those tests be positive, then you can proceed with the more specialized tests. One of them is the Polymerase Chain Reaction test.
You should ask for a complete pathogen panel and only from the top Labs
The top expert is Dr. Garth Nicolson. www.immed.org
Look for a LLMD (Lyme Literate Doctor) with experience in Mycoplasmas and Mycotoxins as well.
There are many people who reversed their debilitating conditions,
after treating their underlying pathogenic infections successfully.
Note: Only a strong immune system can destroy these infectious pathogenic agents.
The specific antibiotics for such infections have no bacteriocidal action, only bacteriostatic action-giving the opportunity to your immune system to identify and destroy the pathogens-
Please research this very well. I'm afraid you were dealt a poor hand so far and now it's time to play catch-up. It can be done, if you can rise above the pain , suffering and aggravation.
You can post here or pm me directly for more details, if you need.
(My advice does not constitute professional consultation)
Many thanks for your long, thoughtful response....I have been wondering myself about the possibility of a bacterial, viral, and/or fungal infection going on that might be causing the arthritis...I was tested for Lyme disease & it came back negative, but I realize false negatives can happen and it may not have been the best lab test....my only question about the possibility of having a possible bacterial, viral, and/or fungal infection is why the highly positive ANA of 1:640 then? That is what indicates autoimmune disease from what I've researched...especially combined with my symptoms....I also failed to mention that my first rheumy actually diagnosed me with SLE based on the highly positive ANA, photosensitivity (sun induced rash), arthritis, and mouth ulcers....I haven't had the rash or ulcers since going on all the meds...then my 2nd (current) rheumy changed my dx to "undifferentiated arthritis" with suspicion for SLE or seronegative RA because he thinks my arthritis is too severe for the typical SLE patient and I haven't shown other systemic organ system problems that severe SLE patients get (just skin & arthritis)....we understand that about half of all SLE patients do not get the more severe multi system organ damage (along with the positive DS-DNA) but if I have the "mild" form of SLE, we think it should have responded better to the meds I was on like plaquenil & methotrexate, etc....certainly not requiring me to be on 5 arthritis meds to "control" my disease....what is further puzzling is that my arthritis has been doing better on the current mix of meds, which I think may be due to the humira & Celebrex....another interesting twist to my story is that I was bitten by a brown recluse spider back in spring 2007 in KY, which required me to go to the hospital when I had a systemic allergic type of reaction to it (both of my arms swelled, not just the arm that was bitten)...that might have introduced some bacterial, viral, and/or fungal agent into my blood, and I've also read about one woman who later developed RA after being bitten by a brown recluse spider...so, as you can see, I'm a complex, puzzling case indeed...in all honesty, I'm reluctant to go off the (toxic) meds on the chance that I indeed do have SLE or seronegative RA, but I agree that I should probably get extensive and proper bloodwork and lab tests done to rule out bacterial, viral, and/or fungal infections...regarding the GERD & Barret's, that was dxd when I had an upper endoscopy done, so they know for sure I have Barret's and I was also showing some signs of the GERD by then too (heartburn, etc)...thank you again very much for your time & advice!!!
Wow girl! You do not lack any excitement in your life -even it it's the wrong kind. You sure have more than what you can handle.
i'm on the run at the moment-one of those very busy weeks-so I' ll send you a message in a few days. Your case does present, it seems, a real challenge to your Doctors and yourself alike.
My suggestion for now, is to work on strengthening your immune system and to tune into your higher energies. That's what really did it for me and helped me turn my health and life around. Really! Never looked back.
Niko is correct in everything written. Chronic INTRACELLULAR bacterial infections coupled with re-activated Viruses (HSV1 and HHV6, Cytomegalo virus, EBV.) ALL these infections overload your immune system and HHV6 reactivating is KNOWN to cause MS like symptoms. like Niko said, check out IMMED and the HHV6 Foundation. If you follow these directions you will be on your way back to health. It might take awhile, but it is worth it.
ALSO, post your symptoms on the LYMES message board. You will get all the help you need.
As I don't know where you reside, you may want to look into Energy Medicine Therapists in your area. Usually there's a free initial consultation where you can judge whether this is for you or not.
I have an Intuition that an Energetic Imbalance (Energy disruption) needs to be addressed. This may stem from your brown recluse spider encounter or other traumatic event from your recent past. It seems that it is the "sticking" point.
Energy Medicine Therapists are able verify and clear past traumas and re-balance your subtle energies, thus allowing the natural flow of Healing Energy support your Immune system and eventually restore your Health.
The synergy of other processes is necessary, though, as it will take a multi-faceted approach to achieve this.
Your symptoms are constantly pulling you backwards, however, using Intuition-not Intellect- ask the question (with closed eyes preferably):
What do I really want in my life?
What do I really love to have?
And after you get the answer, put your right hand over your heart and ask for verification: Is this what I really want in my life?
Is this what I really love to have? You will get the right response each and every time! It has worked for me and everyone I've asked to do this exercise in the past.
Now, should you be able to meditate on this every day, it will manifest in your life, sooner or later!
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