something wrong need help

[fnfiacco]

I have been suffering chronic pain for 2 years now. Started in my upper back with muscle fibrosis then both of my shoulders and progressed to include all of my joints. Before this started i was a competitive athlete and now im disabled my joint problems and pain. I have some pin prick red dots on my body, mild raynauds, swelling in my elbows and my skin will turn red on my hands and elbows. also one time my muscle in my legs swelled and in my arms too then it went to normal. i also have dry eyes and pain that feels like burning. every day a joint hurts and i have some mild muscle atrophy around the areas the arthritis has been in. also i have where my hands and feet always fall asleep.

the abnormalities so far in my tests are

ANA 1:160 nucleolar pattern (nucleolar suggests scleroderma?! )
HLA B 27 antigen (indicates ankylosing spondylitis)
RA factor 15 (normal 1-14)

my first sed rate was 41 but i was pregnant
the second sed rate was 11

nobody in my family has arthritis or auto immune disease so the fact i even had an ra factor in my blood is odd to me even its only borderline positive

my CBC showed monocytes was 12 percent and the normal is 3-8 percent

everything else was normal... my xray showed no fusion or no sacroilitis for spondylitis. i have arthritis in my joints and swelling in my elbows. rheumatologist says i have polyarthritis and fibrolmyalgia with fibro being my main problem. he said its not rheumatoid arthritis. Well i dont think i have fibromyalgia. i think the nucleolar pattern suggests scleroderma. he pinched my skin and said i dont have scleroderma. the only symptoms i have are some tendon rubs and some red dots around my body like 6 tiny red dots one on my face , one on my hand, one on my stomach and the rest on my legs.. i also have tendonitis pretty bad. i was only tested for 3 of the 7 antibodies associated with scleroderma. no skin problems or swelling just the redness that comes and goes with mild raynauds. also shortness of breath with exertion and extreme fatigue.

all my other test was normal i had positive lyme test through igenex but negative for CDC. i did have flea bites and a tick in my home during the time i had started this pain but i think some of the bands cross reacted with viruses that i have had such as cytolomegalovirus and epsten barr. i had some issues with my HLA gene such as iritis one time and achilles tendonitis.

im wondering what the heck this could be? can u have scleroderma that starts as arthritis lasting several years before symptoms on the skin? my c3 and c4 complex was normal but this cant be fibro i have the ana and i have some inflammation. im wondering what kind of chronic infection could cause this or what the heck is wrong?

ideas anyone? idk if i should see an infectious disease specialist or a rheumatologist or who? i want to get to the bottem of this. i feel horrible. any kind of parasite can cause this or chronic virus? please help

[TheLightSeeker]

Hi fnfiacco.

Well I certainly hope you have a good LLMD.
CDC, guidelines are  only for DATA purposes and epidemiological studies and should NOT be considered for diagnostic work to my opinion.
This is a huge disservice to the public, specially when Lyme Disease is considered by them and IDSA as only an acute infectious disease!!!
You must follow up on the IGeneX results with an LLMD, as they are the golden standard in this field.

Now your ANA is not high enough and most Rheumies  not will consider
it and the same with the RA factor.

HLA B 27, positive is just a genetic predisposition and many other factors must be present before AS develops.

I would forgo all other investigations and get Lyme's ruled in or ruled out,
but please look for a good LLMD who are HARD to find!
You may email:  

           contact   [at]    ILADS    [dot]    org

and give your information, including how far you're willing to travel.

Other than that, my opinion is to rule out hypothyroidism by getting
Free T3, Free T4 AND reverse T3 tested (forgo the standard tests as they only indicate serum levels and not thyroid function).

If you have ongoing biological and mental stress, you may also have low adrenal function and the test for this is the "Adrenal Stress Profile"
4x cortisol and  2 averaged DHEA-S-saliva test.

If you need any additional information please let me know.

Best wishes.
Niko

[fnfiacco]

hi thanks


i did forgot my thyroid was normal too. just elevates monocytes and by ana and the igenex lyme. i never saw the tick bite me it was just an engorged tick on the kitchen floor that i stomped. no classic bulls eye rash just flea bites from that dog my room mate brought in. i was wondering about vasculitis. or do you think that it sounds like lyme disease? i did find a llmd i dont know if he was good or not but he gave me a crap load of antibiotics tried for 2 months no difference but i got oral thrush,. he then gave me nystatin and i was starting to think i didnt have lyme disease. i have had the mono virus when i was 20 and then the herpes 1 with the cold sores. after that virus i got recurring mouth ulcers for 6 years i get those outbreaks literally every month or more. i dont know then came the tick and flea instance and the chronic pain . dont know if all my bacterial and viral infections caused the igenex pos lyme or if it really is lyme.

thanks for the help too :)

[TheLightSeeker]

Hmm, not sure how good of an LLMD you had.
If I were your LLMD, I would make sure you would get probiotics, coconut oil and an anti-candida protocol along with the antibiotics.
And 2 months os ABX would normally not put a dent into Lyme's, anyway.
So, you really don't know about having Lymes or not at this point.
There's a marker called CD-57, not diagnostic but common with chronic Lyme's disease, which BTW can mimick ANY disease, as the list of possible symptoms in Lyme's is PATHETICALLY long!
You can do a search at the Lyme Community where I posted this about 2-3 weeks ago. Just click on the magnifying icon and enter CD-57 and I also posted information about candida and Lyme's in the same post.

Never mind, I copied and pasted for you to make it easier (2 parts):

PART 1
"CD-57 is just an identifying marker on the surface immune cells, to identify a specific type of immune cell,  (BTW 57 is just a number in the sequence the identifying marker was discovered - CD  stands for Cluster Designation)
so CD-57 is linked to NK cells but in lower numbers than in CD-56, yet very relevant to LYME DISEASE patients, who have much lower levels than the so-called healthy range of 100-360 count per mcL.
This finding is just a marker, not a diagnostic criterion for Lyme's disease, albeit consistent with Lyme disease status ( lower count indicates disease progression, higher indicates improvement).

If I were a Lyme's patient, I would put my energy and money into genetic  testing first, specially for MTHFR mutations (1st) and HLA (2nd),, but I suggest you totally eliminate candida*, before addressing these, should you test positive.
* This can take a very long time. Rule of thumb, 2 months per year of candida from its onset, which is unsymptomatic at first, on very strict comprehensive anti-candida protocol.

I can see some people shaking their heads here, but yes, the field of epigenetics, nutrigenomics and such are exploding nowadays and if your LLMDs are not up with the latest developments in these areas, you may be missing an opportunity to return to normal health."
PART 2
"Mojogal, I don't intend to discourage you, but it is very complex.
Can you detail what exactly took place in your MTHFR treatment.
And who helped you with this?
This is very precise science and there are far too many variable factors
and very few people have much knowledge in this field.
If the approach is not highly individualized and if all the bases are not covered, there's a good chance it will not work well.
But please read on:

Jackie, I was referring to Candida treatment, in order to "bypass" the genetic defects successfully.
Methylation processes are inhibited by Candida, thus rendering any nutrigenetic treatment (very complex, individualized and expensive).
I can explain in details if you really want to, but in simple terms here it goes:

It involves two main substances, methionine synthase and acetylaldehyde.
The first one,methionine synthase, is a very vital enzyme, responsible for DNA repair and  other processes, directly or indirectly, requiring methylation.
In certain gene mutations, like in MTHFR, methionine synthase is limited.
The second one, acetylaldehyde, a potent methionine synthase inhibitor,  is  a byproduct of Candida.
Conclusion: Candida inhibits Methylation.
Before seriously addressing the gene mutation, it would make sense to
eliminate such a potent inhibitor, considering its prevalence.

So when someone is not making progress, after having tried "everything",
this is an important imbalance to rule out!

The fundamentals underlying the CD-57 in its connection to Lyme disease have not been fully explained (scientifically) yet.

As far as CD-57 goes, it is not unlike most lab findings, which are based on statistical models, so you end up having false negatives and false positives.
However most Lyme patients will still have low CD-57 counts and as they're improving their count will rise in most.

Note that the tests are very time-sensitive and must be done within 12 hours from the blood draw, from what I understand.
Good luck to you if you live outside NC or TX, where the only 2 labs which are able to test CD-57 properly are located. On the other hand, if you own a private jet...lol!
My opinion, too complicated, for what it's worth. Another(medical) money grab, perhaps? "

fnfiacco
You sure have a viral & bacterial load to deal with and should you have the genetic mutations to go along with it, then it would take someone like Doctor House to figure it out.
No, the other way around would not work for Lyme's. The testing is specific for Borrelia -the Lyme's bacteria- and IGeneX is as I said before, the best.

If I can be of any more help, let me know, meanwhile, if I come up with any stroke of brilliance, I'll post again, knowing there's much that can be done
for improvement.

Best wishes
Niko