Vectra DA test and my continuing saga

[needhelp]

Thx to this site/Road Back/AP and mino/AP, in 10 mths of mino treatment: I have gone from not being able to get up out of bed or off a chair w/out a struggle, 50 lb weight loss, massive loss of muscle, weakness and excruciating pain (Rapid onset: I thought I was going to die soon): to being able to function, move, get up and tolerable pain. Before all this is was athletic, fit and healthy.

I went to a new rheumatologist (3rd rheumy) for a consult this mth. My RF came back 1722 this time; anti CCP>250, SED rate 25. This is my third rheumy: first one was a bully, scarey & would not prescribe mino; 2nd one is okay but never heard of AP & is giving me mino just to “humor” me; he advocates the usual toxic stuff. This new, younger, rheumy also never heard of AP & he too advocates mtx, paquenil and biologics; but also will also prescribe mino, since it is an approved DMARD. I have some swelling in my knee periodically, which he drained (that helped so much) & ankles.

The new rheumy did more bloodwork; don’t know why he did Lyme/Western Blot when I am & have been on mino ( I read that antibiotics negate the results) for 10 mths. I was reactive for 41IKDGG, even while Iv’e been on mino for 10 mths? Do I have Lyme or RA or ?

New rheumy also did a new test called Vectra DA and my score was 39 (range 0-100.)

Neither rheumy is interested that I tested positive for mycoplasma & parvovirus by ID specialist and had a bad cough & cold 1 mth before all the joint pain and disability started. There are no AP drs in NJ. I am making good, slow, progress on AP, but am still handicapped by this affliction and unable to work. My family & friends pretend like nothing happened or is wrong; I find this denial lack of acknowledgement/reality, very disturbing.

Any input or recommendations appreciated. Road Back saved my life; I am so grateful, TY everyone!

[lynnie_sydney]

Good to hear that you have seen substantial improvement over the 10 months. Must be such a relief! And BTW, it’s not unusual for people who have no personal experience of chronic illness not to “see” someone who has. Yes, disturbing. No, not unusual.

Any reason why you are seeing rheumies versus consulting with an AP Doctor?

There’s some good info in this thread about Band 41
viewtopic.php?f=1&t=11608&p=75902&hilit=Band+41#p75902

If your rheumy didn’t use a recognised Lyme Lab (Igenex seems to be the one of choice for LLMD’s in the U.S.) results may not be that useful. But at least he did it – says he’s aware of the possibilities!!!

There will be more if you type ‘band 41’ into search box at top of General Discussion topics list

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)

[needhelp]

Thx so much for the info & Link, Lynnie. There are no AP doctors in NJ so I have been forced to go w/rheumies.and ask for AP/mino.

My Lyme, Western blot was done by Quest while I am currently on mino; so I don’t know how valid the results.

I will ask for a list of LLMD doctors- my new rheumy claims to treat lyme as well as RA; told me I have RA ( I don’t think so)….. Lyme Western Blot done 9/2014 (prior to AP/mino) found P18 IGG AB present and P23 IGM AB present, lab was Accurate Diagnostics). Do I have Lyme, RA. both, or neither? Very confusing,

TY again.

[richie]

Hi Vectra DA is an advanced RA test that is fairly new –its state of the art —Are you sure no AP docs in NJ –I knew there were some awhile back –did you check with MAZ or another volunteer ????
richie

[needhelp]

Yes, checked w/RBF and there are no AP doctors in NJ. I am too weak to travel out of state. So glad RBF suggested talking NJ rheumy into prescribing mino (it saved my life); but rheumy (2 of them) never heard of AP. If anyone knows an AP in NJ. pls PM me. I have gotten to the point of having panic attacks when I have to go to the dr’s/rheumy since all they do is push biologics, mtx, and other toxics w/low success rates and do more blood tests. Scarey….. TY again, RBF.

[Maz]

@needhelp wrote:

Yes, checked w/RBF and there are no AP doctors in NJ. I am too weak to travel out of state. So glad RBF suggested talking NJ rheumy into prescribing mino (it saved my life); but rheumy (2 of them) never heard of AP. If anyone knows an AP in NJ. pls PM me. I have gotten to the point of having panic attacks when I have to go to the dr’s/rheumy since all they do is push biologics, mtx, and other toxics w/low success rates and do more blood tests. Scarey….. TY again, RBF.

Needhelp, I’m going to send you a few potentials for NJ that you can check into. One is an integrative rheumatologist (a rare bird indeed!) that may be worth checking into. Will send via PM for you. 🙂

[Karel]

“The new rheumy did more bloodwork; don’t know why he did Lyme/Western Blot when I am & have been on mino ( I read that antibiotics negate the results) for 10 mths. I was reactive for 41IKDGG, even while Iv’e been on mino for 10 mths? Do I have Lyme or RA or ?”

I dont understand what you mean. You are surprised you are still sensitive to 41 IGG, even after 10mths of treatment or you were surprised you were only sensitive to 41 after 10 mths of treatment? I would expect you to raise the second question, because the lyme antibodies may become more prominent during treatment but on teh hand igg will not easily disappear after 10 months on mino only.

But, more importantly the 41 band doesn’t say much really. Look at the graph in the below link. A whopping 40% of the “healthy” population has 41, so this is no convincing sign of lyme. I am struggling as well with the triangular relantionship between lyme, rheumatoid and westernblots and it unresolved in my opinion. In my honest opinion it is a shame that not more and bigger studies have been done to find the relationship. Come on folks, we are not asking for a cure here, just the right diagnosis!!!

http://www.igenex.com/innovations3.pdf

For what I know.
1) Different studies give different results, some show relation between RA and WB bands, some don’t.
2) Those studies that do (sorry no time for links now) show 41, 31 and the heatshock 58, 66, 73 as related to RA. About 40% of RA sufferes have one or more bands. 41, 31 and heatshock being the most frequent.
3) The more specific the bands and the more bands the higher the likelihood you have lyme as a possible reason behind lyme induced rheumatoid.
4) Igenex criteria are better than CDC, but fail for rheumatoid patients.

For now, if I were you, I would not consider lyme, purely based on your bloodwork (clinical symptoms??) But a thumb up for your rheumy to do the test at his/her initiative.

Also you say you are positive for mycoplasma and parvovirus. You mean you ar currently infected (concluded on basis of all your different immune responses) or they show past infections, by (highly) elevated igg antibodies? Current infection would probably get some more attention than elevated IGG antibodies!

Best

[Karel]

Sorry didn’t see your positive response to 18 and 23 as well, but what date was that? 9/2014 as you state or 9/2013. That changes things quite a bit.
Do an Igenex test, read lots about lyme and testing and look for preferably an llmd.

Some say it is better to be off the abx for 6 days to do WB test. My LLMD has not given me direction. For oher antigen and PCR test it is advisable to be off abx for longer periods.

Success.

[needhelp]

Hi Karel,

Positive for 18 Igg and P23 IgM on 9/2013 Western blot (before abx).
Reactive for 18Igg and nonreactive for 23IgM Western blot 7/2014 (10 mths after trtment w/abx)

Thx for the info on “41”.

So much to learn; TY Again for your info.

[Karel]

I would still do the Igenex test. There are reasons why this test is a more sensitive test then a regular lab test. But at the same time I have to warn you because it gets complicated to distinguish lyme from rheumatoid, if your blood shows more lyme activity.
Best.

[Author]

Posts