I finally got my husband to get his lyme from IgeneX . He had a SCA last October so I have been suspicious since then.
IGG IgeneX. (Positive) CDC. (Negative) 18 was + 31. +++ 41. IND 58. ++ 83-93. +
IGM IgeneX. (Negative) CDC. ( negative) 39. IND 41. +
This says he has lyme but it's not currently active. Would you contact a Lyme doc. I think we should even though damage is done to his heart. He is on lots of heart meds. Still feels not good a lot of days. Thanks for any advice. Oh do you know if we call IgeneX they can tell you what to do. Beth
Posted by GretaM (Member # 40917) on :
Oh gosh!
He has lyme for sure!
It is also "still active".
The normal igm and IgG rules for bacteria do not apply to lyme.
It sheds it's outer surface protein whenever it needs to protect itself.
So it shows up in IgG and igm intermittently.
I guarantee if your hubby took an abx challenge, his Igm would convert to positive as well.
He needs to see an LL and start treating ASAP.
A strong response, ie lots of the + after the number means the immune system is still kicking back.
Over time, as lyme destroys the immune system, there will be less and less +.
Also, has he been tested or treated for any coinfections?
The tests for some coinfections are just as poopy as for lyme, but most of us have them.
Just an FYI, I had rocky mountain spotted fever for 12 years... 12 years before being properly diagnosed by an LL.
Please encourage your husband to see an LL for proper assessment. (even if he chooses not to treat). The LL will be able to tell, based on coinfections, what is in store without treating. Also there are alternatives to abx.
When certain coinfections combine with lyme, it almost always spells MS ALS or parkinsons down the road.
Best to head those symptoms off at the pass, and treat before the damage is done.
Posted by Lymetoo (Member # 743) on :
Find an LLMD right away!!
(what is SCA?)
-
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both." ---Dr C of MO
SCA is a sudden Cardiac arrest. He actually stopped breathing and my two sons in law, one of whom is a fireman in Seattle, gave him CPR for five minutes until paramedics got to the house. He now has a defibrillator pacemaker in. He is so fortunate in so many ways. To think it possibly was caused by Lyme is scary. His heart has an electrical problem and nothing to do with arteries. I know lyme often goes to the heart.
Medical people are saying that sudden cardiac arrest is the No. 1 killer. No warning at all. Plus FYI you should not do mouth to mouth anymore. You just do chest compressions. They say the heart has enough oxygen in the body to sustain. Check it out. More people might be more willing to do CPR if they know that.
Posted by Lymetoo (Member # 743) on :
Oh yes, Lyme definitely affects the electrical signals in the heart. Very scary!
You are correct that they no longer recommend the forced breaths. Makes it easier too.
Do not stop until your husband finds a qualified LLMD.
Posted by Robin123 (Member # 9197) on :
Definitely Lyme, and active. IGeneX will discuss any test results. 1-800-832-3200. We here help you to find an LLMD.
Posted by BTTaylor (Member # 14342) on :
We have the name of doctors in Seattle. No one here on the east side of the state I am sorry to say. My husband just has to decide what he want s to do or who to see. I welcome the names of any doctors however if anyone has had good luck with one. He tried to call IgeneX on Friday but no answer but he said he would try again on Monday. Thank you everyone for your assistance. I really appreciate your help! I've had lyme since 2003 and I am sick to my stomach that I possibly gave it to him. ( he doesn't want to go to my doctor In Seattle) I've been using the rife machine since 2009 but he can't use that due to his pacemaker. Argh! It made me so much better. But.....I am just relieved he is still here !!! We 'll get thru this.
Posted by GretaM (Member # 40917) on :
There are 40 plus trained LL naturopaths in BC now, thanks to Dr. M's persistence and awareness nights.
In BC, naturopaths are able to prescribe antibiotics. Some have also been given special rights to prescribe IV antibiotics.
If you think it will be easier to go north to find an LL for your hubby, let me know, I will PM you some info.
Posted by Judie (Member # 38323) on :
Igenex is a good test. Even medicare pays for it.
No reason to retest.
Many other Lyme specific bands are positive and there are clinical symptoms.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by applewine:
The igenx test is not FDA approved and I wonder if/why they could not do that to bring more clarity and trust to the issue.
- There are no issues with the Igenex WB being a valid test; only IDSA doctors who do not believe in Lyme disease.
Posted by BTTaylor (Member # 14342) on :
My husband has an appointment with an LLMD in Seattle so I am relieved about that. He is also seeing his regular doctor this week so we will see if he puts him on anything. I think he will for a month maybe.
But I am writing to vent. We have a good friend who is a family practice medicine doctor. Thru the years I've had lyme I have sent him lots of the info on lyme.
His advice to us was to go to an infectious disease Doctor! . We would if we could fine a LLMD infectious disease doc but I bet most of them are under the guidelines of the IDSA. ( as well as his primary doc.) I know its just difficult to get people / docs to change their minds about Lyme until is 100% proven.
[ 05-27-2014, 04:20 PM: Message edited by: Robin123 ]
Posted by Lymetoo (Member # 743) on :
BTTaylor.. For sure 95-99% of infectious disease doctors follow the IDSA guidelines. It's called, "We don't care if you get well or not."
Posted by applewine (Member # 26220) on :
quote:Originally posted by Lymetoo: Why would he need confirmation of band 31 when he has tons of other Lyme specific bands and a positive IgG?
Because you still want to know if that band 31 is caused by lyme disease. The more certain you are the better. Otherwise you should just ignore the band 31 if you aren't going to confirm it.
Posted by Robin123 (Member # 9197) on :
No, he has plenty of other positive bands, and no, IGeneX doesn't need to have FDA approval - it's enough to have CLIA approval.
Posted by Lymetoo (Member # 743) on :
If you have Lyme specific bands, that is all you "need" for "confirmation."
Bands 83-93 are the DNA of the Bb (as an example) .. so in BTTaylor's case, there is no need at all to confirm band 31. He has plenty of other positive bands.
What is your agenda, applewine?
Posted by Robin123 (Member # 9197) on :
Yes, any doctor can order the test without having to understand it. Mine did.
Posted by BTTaylor (Member # 14342) on :
Apple wine, m y husbands heart doctor signed for the IgeneX tests but we did all the rest. Decided what tests to order, had the blood drawn at Quest labs with the kit from IgeneX and Quest labs sent it in for us. Then I had IgeneX send us the results.