My daughter in-laws father is very sick with all the obvious lyme symptoms, but 2 LLMDS have done testing with igenex and pcr testing as well.
She said they tested for co-infections etc. He lives in highly endemic area and has gotten bitten more than once over the years. Also has bad case of psoriasis.
He is legally blind and is very sick. She said they can't even find one titer. They are willimg to give antibiotic, but they are afraid because he is so sick.
I know there are a lot of smart people on this board. Anyone have any thoughts on this?
Thanks
Gael
Posted by seibertneurolyme (Member # 6416) on :
Discussing this question with someone by P.M. today.
Hubby has only ever had one band (41) show up on one of many tests from many different labs.
Lucked out and got one PCR positive test (whole blood only but not serum) from several different tests at several labs again.
I do know that with him, about 3 years after he first got sick the tests for viral infections finally started showing titers -- PCP was always convinced that hubby had viruses as well (HHV-6,
CMV, EB etc...). PCP actually took this as a good sign and said that it meant hubby was improving. Guess that it means his immune system is now fighting and recognizing these viruses and producing antibodies.
Have not retested Lyme and coinfections for about 2 1/2 years but do plan to do this soon.
Have read that magnesium is needed to produce antibodies. I am sure that other things are required as well but have not researched this.
If he knows he was bitten he is a step ahead of the game. Many don't have that clue to go on. Hubby included.
I say try treatment and see what happens. What does he have to lose?
This is just my opinion based on hubby's experience and is not medical advice.
Bea Seibert
P.S. The person I was communicating with said that in their opinion someone would never become asymptomatic to Lyme and tickborne illnesses
unless they started producing antibodies -- keeping my fingers crossed for lots of positive test results for hubby.
Posted by luvs2ride (Member # 8090) on :
Here is another thought.
I have systemic yeast from Leaky Gut Syndrome. The symptoms are as varied as Lyme symptoms.
Have him checked for Leaky Gut. It can make you extremely ill. I even read where 79% of people with systemic yeast die from it. I really hope that is a gross exaggeration, but it does give you some idea of the seriousness.
Word of warning! Many medical doctors won't know a thing about this. Find a medical doctor who practices intergrative medicine.
Posted by Jill E. (Member # 9121) on :
Why are they afraid to give him an antibiotic - is his liver too weak or do they feel a herx would be too dangerous?
When I started on my first antibiotic - Doxy - I practically rose from the dead, I had such fast initial improvement. My LLMD said that alone was almost diagnostic of Lyme. Or I would guess diagnostic of some kind of bacterial infection.
If the LLMD felt it would be safe enough to try one antibiotic, or even an herb like Samento Cat's Claw, and your DIL's father either improved or herxed, that would be a good start at confirmation.
Please keep us posted.
Jill
Posted by gael1111 (Member # 8816) on :
Thanks for your replys everyone.
Cave76
Sorry for the confusion, I really wasn't totally clear. The LLMDS think he has lyme. they can't understand why even one band didn't show up, with the labs they used(igenex etc)
Usually one band is considered negative as we know, but the LLMD was hoping for even that. My DIL, said they couldn't understand why they couldn't retrieve any bands at all, because they are sure he has lyme.
I suggested giving him antibiotics to rev ketes up and then test, That is when she informed me that they were afraid to give him anything. Doesn't make sense to me.
I suggested another LLMD, but she informed me they were taking him to the Mayo Clinic. Of course we know how that will turn out. Remember, this is my DIL, not my daughter, and I can only push so hard.
I suggested that he had lyme disease 3 yrs ago, only to be rebuffed with "everyone does not have lyme disease!" Her sister was diagnosed with it 2 yrs ago and successfuly treated by one of these LLMDS.
Hopefully they will find someone who knows what their doing. Hope this is clearer.
Thanks,
Gael
Posted by david1097 (Member # 3662) on :
You did not mention which symptoms nor speed of onset but has he been tested for: syphillis (some similar symptoms) HIV (no/low antibody response = no bands)
Also has anyone taken a close look at ALL the diseases carried by the ticks in the area. There are a lot, many of which likley have no test yet. This research takes a LOT of work so a Dr would not likely do it since it would not really help anyway. ABX migh help or might not so I guess that the Drs feel that it is worth a try if he can tolerate it.
Posted by Foggy (Member # 1584) on :
I never tested + for more than 1 band until I did lt abx, then I tested CDC + and opened the eyes of an IFDSA dubious duck. Seems to be indicative of the was bb can mask itself and trick the immune system.
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