Igenex Results

[TischSEB]

Hi,

We received SEB's results from Igenex today. I now need to persuade him of their significance. My question is – do these look undeniable? Would a LLMD treat aggressively based on these? I need all of your expertise – please help! Would additional tests after a month or so be warranted?

Lyme IgG WB

18kDa (-)
22kDa (-)
**23-25 kDa (-)
28 kDa (-)
30 kDa (-)
**31 kDa (+)
**34 kDa IND
**39 kDa IND
**41 kDa (++)
45 kDa (+)
58 kDa (+)
66 kDa (-)
73 kDa (-)
**88-93 kDa (-)

Lyme IgM WB

18 kDa (-)
22 kDa (-)
**23-25 kDa (-)
28 kDa (-)
30 kDa (-)
**31 kDa (-)
**34 kDa (-)
**39 kDa (-)
**41 kDa (++)
45 kDa (+)
58 kDa (-)
66 kDa (-)
73 kDa (-)
**88-93 kDa (-)

TIsch

[Maz]

Hi Tisch,

You know I'm just a fellow patient, but according to IGeneX criteria, a positive result is one in which two significant bands (the double-starred bands **) are positive.

On Seb's IgG (past infection) he reads positive on two of the most significant bands for Lyme, Bands 31 and 41, as well as Indeterminate on two other highly specific bands, Bands, 34 and 39. As per IGeneX testing, therefore, he should have received a positive result from them. Yes, an LLMD worth his/her salt would take these results as a confirmation of Lyme in combination with his history of past tick exposures and symptoms.

Please read these two links and they will reveal all:

http://www.lymenet.de/labtests/brenner.htm

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

Great job getting this test run and figuring this out with Seb! Of course, you still don't know what tickborne coinfections might be in the mix, but a good LLMD will treat according to symptoms. Fortunately, you live in one part of the US where access to good LLMDs is not a problem. Some of the top ones are in NYC. If you need LLMD physician lists, let us know.

Peace, Maz

[Kim]

Hi Tisch,

Welcome to the Lyme wars.  :crying:

If you haven't already read Pam Weintraub's book, Cure Unknown, it will explain a lot of the insanity surrounding Lyme.  If the neuro-Lyme doesn't make you crazy, the arrogance and ignorance from the medical community will. 😯  At least you shouldn't have to look far for a LLMD that knows what they're doing.

Good luck in your treatment.

Take care……kim

[Roz]

Hi Trish,

I hope these lines find you having a good weekend.

The Lyme DX is not the end of the world, as I remember I was just overwelmed. But today I am doing things I NEVER EVER thought I could.

If I was you, I would get to a LLMD as soon as possiable.

Hang in their mate and hang with us.

Much Love,
Roz

[Conniel7777]

Hi,

 

 Wow.. you found a piece to the puzzle! the good thing is, now you know and can DO something about it!

I have not had my IGenex test yet.. I figure I wont bother until I have an appt w/ a LLD, because even if I got a positive result, what would do about it? without a LLMD, nothing…  so thats why I am going to just let him test me thru IGenex.

I know we live in the same area, and I chose Dr. M in NYC. I will be seeing him in the next couple of months. ( Maz had sent me a list of LLMD, and Dr. M's credentials are really great.. we are sooo fortunate to be so close to him! )

Glad to hear you have uncovered this piece of SEBS puzzle.  🙂

Connie

[TischSEB]

Hi Maz, Kim, and Roz,

Thanks for your replies, links, and good wishes. To be honest, I was relieved to get this information as we were lately getting the “not much more we can do for you” shrugs from several doctors and it was pretty demoralizing.

But there is something that is really bothering me now – and maybe Parisa has information on this since her husband is receiving IVIG. I almost don't even want to bring it up, but here goes:

SEB had the Lyme blood draw taken 21 days after the last day of his monthly IVIG infusion. Is is possible that the antibodies that were infused into him from the IVIG could have affected this test result? Could it be somebody else's donated antibody response? Would it register this strongly on bands? The IVIG is said to be “effective” from 2 weeks to 2 months after the infusion. So would the Lyme test be registering his true immune response or the “passive immunity” conferred by the IVIG?

Horrifiying as it is, Lyme would be a better case scenario than some of the other prognosises (is that a word??) that have been discussed. I am re-reading the “Cure Unknown” book to brush up on all of this before entering the fray.

Any thoughts?
Tisch&SEB

[TischSEB]

Hi Connie,

How are you? Thanks for writing. I am really hoping it is the missing piece of the puzzle. I have one reservation (see my other response to Maz,Roz&Kim) – but regardless I am going to forge ahead with a LLMD appt. Well – as much as waiting several months for a next appt is “forging ahead” – haha.
We had SEB's PCP order the Igenex test – apparently he has used that lab before.
I am now in the process of researching the docs on the list – I would like to go to NY but SEB cannot walk up stairs or sit down in normal chairs (arms and legs too weak) so to navigate public transportation there is a nightmare for us. We find that the use of a cane is a good signal to people in a crowd to give us a little clear radius, tho – but in general we also avoid crowds for fear of trips, falls, general holiday mash-ups.
Good luck w/Dr M! I may PM you about costs – been avoiding thinking about that!

Tisch&SEB

[Roz]

Tisch,

Your SX of irregular heartbeats is what is coming out at me. You can go to your reg. MD and ask to have Bartonella blood work thru Quest or who ever. They will ony test for 2 types where their are several other. But alot of people can test postitive thru the reg. labs.

Like in my case my LLMD knew I had Bartonella even though I had 3 blood tests for Bart. that came up neg-.

What I am trying to say is you could have both Lyme and Bart. I hope not. A competant LLMD will know.

Please get well much love, Roz

[Roz]

Hi Again Tirsh,

I am still thinking of you, have you had a Cardio test called an Echo???

Hugs, Roz

[TischSEB]

Hi Roz,

Yes – SEB has had 2 Echos (echocardiogram) and worn numerous holter monitors over the past two years. The first echo was normal, and we are waiting to hear about the results of the second one. The holter moniters have repeatedly shown that he has a regular “irregular” heartbeat – which is currently being managed by 2 heart meds (metroprolol and flecainide). When I check his heart with my stethescope (yes, I invested in one) – it sounds to me like something called “heart block” (nothing to do with blockages) – and this shows up on many Lymes symptoms lists. In addition to this chronic irregularity he will sometimes have severe palpitations, where the heart is thumping much harder than normal and has NO rhythm….I sometimes describe it as listening to a percussion set fall down some stairs – just wild random beats. The first couple of times this happened, we went to the ER – but now we manage it with extra doses of the meds plus Ativan (anti-anxiety meds)—it is terrifying.

As for the bartonella – we had the co-infections run at Igenex and they came back negative – but I will ask for this again from the regular MD – and when we get into a LLMD I will bring it up. I noticed a while ago that SEB has some stretch marks that may or may not be signs of the bartonella “cat scratch” rash. He has had these a long time, I am not sure of the significance.

Did you have heart involvement that was linked to bartonella?

Also – this whole illness “exploded” on SEB in May 2008 when he went into the hospital for a week with an atrial fibrillation – so there has always been a cardiac component that has been treated by a cardiologist, but largely ignored/disregarded by every other specialist we have seen (neurologists, rheumatologists, infectious disease docs).

Tisch&SEB

[Roz]

Hi,

I use a blood pressure monitor.

My first Echo was normal, my second was NOT. The second one said Diastolic dysfunction of the left ventricle.

Are you using the same Cardiologists, for the second Echo? The reason why I am asking so they have a comparision, with the Echo tests.

My LLMD noticed a heart murmer with me, she wrote pateint has an infection in her heart nothing about Lyme, and addressed it to my Cardiologists. My Cardio is not Lyme Literate, but they hussle with any infection in your heart.

My test came back neg- from Igenex as well for Bartonella, but I was treated for it. Even though parasite testing is totally inaccurate if I was you I would have him tested for that as well.

I am new here, but not new to treatment. If this is your husband we are talking about he is going to need IV's to get into the heart muscle. I had to have various IV's during treatment.

He needs treatment right away.

I am getting my life back today. I am soo much better than I ever thought I would be.

Much Love, Roz

 

[Roz]

I have a hard time reading the medical article let alone explaining them. I really admire Maz for being able to do that. Here is an article about the heart and Lyme.

 

http://www2.umdnj.edu/~shindler/lymeecho.html

[TischSEB]

Hi Roz,

Yes – we have had the same cardiologist all along – the one who admitted SEB to the hospital – so he has seen the case from the beginning.

How did they go about treating an infection in your heart without identifying it as Lyme? Did your Echo ever go back to normal?

What do you mean be parasite testing? In addition to the tick co-infections?

We are making the LLMD appt on Monday – hopefully we can get in within weeks rather than months.

I am glad to hear you are doing so much better now. I hope we can say the same one day – and pay it forward.

Tisch

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

SEB had the Lyme blood draw taken 21 days after the last day of his monthly IVIG infusion. Is is possible that the antibodies that were infused into him from the IVIG could have affected this test result? Could it be somebody else's donated antibody response? Would it register this strongly on bands? The IVIG is said to be “effective” from 2 weeks to 2 months after the infusion. So would the Lyme test be registering his true immune response or the “passive immunity” conferred by the IVIG?

Tisch, I'm sure Parisa can give you a better answer on this than me, but as I think about it, IVIG is donated immunoglobulins.

http://en.wikipedia.org/wiki/Antibody

“Antibodies (also known as immunoglobulins[1][/suP], abbreviated Ig) are gamma globulin proteins that are found in blood or other bodily fluids of vertebrates, and are used by the immune system to identify and neutralize foreign objects, such as bacteria and viruses.”

This is a great question and definitely something to ask his LLMD when you see him/her!

Peace, Maz

 

[Roz]

Dear Tisch,

The Cardio noticed such a difference in the the 2 Echo's I had that it could only of been an infection that caused such quick damage. 

Mainstream medicine put me on the A bomb of antibiotics. After 6 1/2 weeks I went from a bedridden state, to being able to walk around the block. With any infection it is really hard for them to pin point they just DX me with Staph., with nothing showing up in my blood work. But in the back of my mind I knew I had Lyme. Lyme is the great pretender.

The treatment would of been the same so I did not argue.

They thought about doing a biospy of my heart but I said no way.

I am allergic to Penicillin so I wasn't given that.

By reg. mainstream medicine I was given Gent. and something else for 3 1/2 weeks, then Vanco with something else. I started feeling better then my LLMD took over, she put on Rocephin for 5 1/2 months with other meds.(tablets) as well.

If the infection is in your husband's heart he need IV's. The tablets will not go deep enough if that makes sense. At least that was what I was told by my Cardio.

He needs to take it yery EASY.

You need to tell the LLMD he needs to be seened right away (Tomorrow). Have them right a letter just stating an infection to his heart.

For any Doc., for them to pin point an infection it's like trying to find a needle in a haystack.

If he gets the right treatment he will have his life back, but only if he does.

Hang in their, Roz

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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