I got my Lyme Disease test back from Igenex

[Kim]

[user=1508]carries[/user] wrote:

Hi! Does anyone know if i have to stop abx before i do the igenex lab test for lyme….boy i hope not!

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Carrie, this is loaded with good information.  On p. 7, Dr. B. recommends patients be off of abx for 6 wks prior to testing.

kim

[Kim]

JB,

I'm so glad Maz picked up on the fact that the IgG was missing. 😯  See, that's why we keep her around. :roll-laugh:

With your serious gut issues I do hope you pursue food allergy testing.  I know you love your pasta, but if you have Celiac, that's a problem.  I just learned I was allergic to dairy and eggs too…….who knew???

If I recall, you built your house about the same time we did and there's nothing more toxic than a new house.  The outgassing from all the construction materials, carpets, paints, etc. are enough to put anyone six feet under.  Do you feel better when you're on vacation and out of the house?

Sure hope you can start getting some answers.

Take care…….kim

[louris]

I'd have to agree with Maz.  I had the IGeneX lyme testing done.  Negative except for one band (41), ++ on both IgM and IgG.  However, I did test positive for Babesia (Duncani) after being tested for Babesia (Microti and Duncani) and Bartonella.

I also have some of the types of symptoms that you do too.  What kind of jumped out at me is the inflammed eye.  One of my eyes, at some juncture, after pneumonia quite a few years ago, kind of seemed to puff out/bulge a bit.  I also have some sort of cranial nerve dysfunction producing trigeminal neuralgia-like symptoms.  Therefore I've wondered if I have some sort of inflammation around my brain.  I also recognize your fatigue, rashes (more of a psoriasis type rash though), sinus problems, muscle and joints pain, and rib area pain (recall someone mentioning this can be babesia).

Ever been tested for C. Pneumoniae?

[JBJBJB]

[user=40]Kim[/user] wrote:

 Do you feel better when you're on vacation and out of the house?

Kim,

We took a three weeks trip to NY, Long Island, and NJ and Baltimore this past summer. Sorry Maz, we did not make it that far to meet you. Perhaps next time.

Yes, every one noticed I did not cough at all. As soon as I got back, the cough started again. Now with the door and windows are closed, it gets worse.

My husband and I were invited to the university's president's dinner on Thursday. I told him I could not go. I did not want to cough around…. so I am not going. It's very bad, Kim. It's all from my post nasal drip.

My husband and kids do not have the problem at all. We also installed a very expensive air cleaner machine. It did not help at all.

JB

 

 

 

[JBJBJB]

[user=290]louris[/user] wrote:

I also have some of the types of symptoms that you do too.  What kind of jumped out at me is the inflammed eye.  One of my eyes, at some juncture, after pneumonia quite a few years ago, kind of seemed to puff out/bulge a bit.  I also have some sort of cranial nerve dysfunction producing trigeminal neuralgia-like symptoms.  Therefore I've wondered if I have some sort of inflammation around my brain.  I also recognize your fatigue, rashes (more of a psoriasis type rash though), sinus problems, muscle and joints pain, and rib area pain (recall someone mentioning this can be babesia).

Ever been tested for C. Pneumoniae?

Louris,

Yes, my left eye is getting worse. I am developing a “lazy eye” which means left eye cannot open normally. My rash comes and goes. It's all blister alike type of rash. I try not to break the skin when I scratch them. I have flu like symptom each day, very tired. My skin is getting really dark. I am a light skinned person, but now I am so dark every one made a joke saying I must have been in Florida.  My son told his friend, “actually my mom is black”…. and his friend (I saw him growing up) said, Oh yeah, I can tell she is a black lady.   You can tell how dark I get.

I don't know if this is related to lack of oxygen in my blood (as I read) or minocyclin. I have an annual check of my lungs in January. I will ask for Chlamydia pneumoniae you mentioned. I did test positive of mycoplasma pneumonia when I was in Iowa.

More and more I think I may have something related issue with my guts, which triggered a lot of allergic reaction. My lungs have been badly scarred due to coughing from post nasal drip.

JB

 

[Kim]

[user=266]JBJBJB[/user] wrote:

[user=40]Kim[/user] wrote:

 Do you feel better when you're on vacation and out of the house?

Kim,

We took a three weeks trip to NY, Long Island, and NJ and Baltimore this past summer. Sorry Maz, we did not make it that far to meet you. Perhaps next time.

Yes, every one noticed I did not cough at all. As soon as I got back, the cough started again. Now with the door and windows are closed, it gets worse.

My husband and I were invited to the university's president's dinner on Thursday. I told him I could not go. I did not want to cough around…. so I am not going. It's very bad, Kim. It's all from my post nasal drip.

My husband and kids do not have the problem at all. We also installed a very expensive air cleaner machine. It did not help at all. 

JB,

There are companies you can hire to come and check your house for toxins and mold.  Maybe something to consider since you suspect your house is making you sicker.

Take care……kim

[richie]

Hi-Have you seen DR D. G. in Indianapolis –he has much experience in rheumatoid diseases with an excellent reputation ??? –He most likely would be able to give you a DX—I am sure MAZ has his name and info —

Richie

[richie]

Hi–Hold on JB —we here on Long Island and I am also sure Joisey folks resent being accused of having good air quality —:)

richie

[JBJBJB]

Richie,

How could I miss you while I was visiting my friend who teaches at the Hofstra University? I love Jones' beach. My son actually got to play the Black course in the Bethpage (the US Open golf course). He was very thrilled. He did pretty well for 16 year old for that difficult course. I took my 13 year old shopping at that GIANT mall. I love Long Island.

Thanks for the recommendation of Dr. G. Actually I made several phone calls to his office before I found Dr. S in Iowa. I was not very impressed. If you want to know the detail, I'd like to PM you.  I am reaching to the point I need to make decision of what my next treatment is going to be.

Thanks, Richie!

JB

 

[JBJBJB]

IGG Results

CDC/NYS              Negative

         18  KDa.        (-)

         22  KDa.        (-)

**23-25 KDa.         (-)

         28 KDa.         (-)

         30  KDa.        (-)

    ** 31 KDa.         + +

    ** 34 KDa.         (-)

    **39  KDa.         (-)

    **41  KDa.         IND

        45  KDa.         (-)

        58 KDa.          +

        66 KDa.          (-)

       73  KDa.          (-)

**83-93 KDa.        (-)

By IGeneX criteria, IgG WB is reported positive if two or more of the double starred bands below are present. IgG WB is negaitive if less than 2 starred bands are present. A positive result suggests exposure to B burgdorferi.

By CDC/NYS creteria, IgG WB is reported positive if 5 of the following bands are present: 18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93 kDa. The IgG WB is negative if less than 5 bands are present.

So the question here is which creteria should I use?

:JB

[Trudi]

[user=266]JBJBJB[/user] wrote:

So the question here is which creteria should I use?

The first; you  look very positive to me, especially with 31 and 41.  “IgG represents past infection” per Maz; my understanding is that you never completely get rid of the disease, but get it totally under control.  I would definitely check into this much further.

Good luck–

Trudi

 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=266]JBJBJB[/user] wrote:

IGG Results

    ** 31 KDa.         + +

    **41  KDa.         IND

        58 KDa.          +

      

 

Hi JB,

Well, this is pretty interesting. Band 31 is so specific for Lyme, it's usually regarded as being associated with nothing but Lyme by LLMDs. You might want to check out this link that has a discussion about Band 31 and some very interesting links to follow:

http://rbfbb.org/view_topic.php?id=3257&forum_id=1&highlight=brenner+band+31

Among the reasons why IGeneX testing is preferred by LLMDs over the CDC standard tests is because (a) they are more sensitive and (b) the IGeneX WB test includes bands that were removed (including Band 31 which detects borrelia spirochetal proteins called, “Outer Surface Protein A” or “OspA”) when they were creating the Lyme vaccine – so specific to Lyme they created a vaccine from these antibodies! – but when the vaccine failed and caused autoimmune probs in those vaccinated, it was withdrawn from the market and they never returned Band 31 to the test. Pam Weintraub talks about this in her book, “Cure Unknown.” She said this band is so specific to Lyme it can be due to nothing else and, because it was never replaced into the standard tests, some of the sickest Lyme patients never test positive on standard tests. The argument that was used by those who removed the Band (the Dearbourne Committee) was that not many people tested positive for it. Well, duh…most people who get antibiotics early for Lyme do well and recover and this band usually doesn't show up until much later down the road after people have been sick a while.

In the link above, you'll find Brenner's and Dr C's links that are very informative. Hope this helps, JB in your quest to get some answers.

Peace, Maz

[Kim]

Interesting, JB. 

My sister, that also has SD, was also tested for Lyme and she only showed one positive and it was on the IgG, Band 31.  Because of her symptoms and that + Band 31, she's being treated for Lyme.

My LLMD is considered one of the best in the midwest, but has a long book-out.  It's not a bad idea to just get your name on the wait list while you're trying to make up your mind what to do.

Good luck……kim

p.s. Midwestern Lyme is somewhat different from New England Lyme or even Southern Lyme, so it's a good idea to stay in your area if possible.

[JBJBJB]

Maz,

It is very interesting. I actually copied your research and am going to fax it to my doctor's office. I will have my doctor call Dr. H of Igenex if he has any questions.

If I only have this one band showing up positive, could this alone be a determining factor that the possibility of having LD is very high? Perhaps I may need more tests based on the positive of band 31.

If you'd pull out “Dr. S in Iowa” I wrote, you also could find that my IgG has been sky high at IgG 2,340 (normal range 700-1,500). I have been mentioning this to my primary care, he has not paid too much attention to it. He just told me, “JB, you have some infection in your body, i don't know what!”

Could this high IgG related to this band 31? Or the other way around? Or because I have some other serious infection which would affect band 31? Based on what I have read, it seems band 31 also showed in my regular IgG blood test.

I understand you are not the doctor. I am just thinking it out loud.

Thank you very much for helping me to sort this out, Maz.

:JB

 

 

 

[JBJBJB]

Kim,

Please email me and let me know about that doctor. Meanwhile I am trying to sort these things out. What does “+ + ” mean here? How many +++++ each test has?

As you know I am in a big mess right now, health wise. I am anxious to know what I should do next. oh well….. I really believe I have something related with my guts.

:JB

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