posted
I'm clinicly diagnosed with Late Stage Disemenated Lyme, Bartonella and "mulitutde of others" ?
Was told that since I had positive Elisa test in 2005, 2008 & again in 2010 that even though Western Blots were all negative it's gotta be Lyme. Just had brand new western blot by Quest Lab- negative again. And Bartonella test by Quest also negative. Doc wants me to spent $1100.00 for Ignex bartonella testing and another western blot. Figure I should do it, but have many people here never had a positive western blot but continued treatment and got better? I was convinced along with the doc I've had Lyme + for many years and am quite debilitated but now beginning to think dymyelating disease instead - all bloodwork has proven is systemic muscle damage (High CPK) Severe inflamation from CPR tests and constant high sed rates. Brain MRI consistant with Lyme - and ofcourse my symptoms are debilitating and began right after total knee replacement last year. How many have not had positive western blot but definately have Lyme + co infections?
And what does Human Parvo and Epstein Bar antibodies have to do with chronic lyme, if at all? So confused!
Thanks
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Unfortunately, Beagle, some of our sickest patients test negative most or all of the time- so that is not uncommon at all.
MY opinion, and IF you want to spend more money...
If YOU personally have to feel satisfied by having a positive test (and I understand that need)... wait till after you've treated some to repeat the tests.
Maybe you will show positive then? Sero-conversion after treatment does happen ... even the IDiots say so.
You can expect to have the other lab reading if you have been sick a while.
Not sure in what context you are asking the last question... but those viruses may be opportunistic or tick borne, or something else. We don't know.
If opportunistic... when the immune system is down and/or struggling, all sorts of other "stuff" can slide in and take hold.
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
If you do want to test with Igenex, you really only need tests 188 and 189 for $200 that would give you the western blot IGM and IGG results. You can also add in the Bart test, (just know that they don't always pick up on Bart) It should not cost $1100 unless you are doing alot of other testing, which IMO is not necessary with a good LLMD.
posted
I agree with lulu... no need for $1100 in testing.
Get the WB ... tests #188 and 189 .. A good LLMD will know by your symptoms if you have bart or not. I thought Fry labs had the best test for bart???
Quest doesn't always find what they're looking for. As for Lyme, they don't even test for all possible bands, so how could they possibly be a valid test?
My WB was overall negative. I had had Lyme for 42 yrs by the time I was diagnosed...so my immune system was very suppressed. Couldn't register enough antibodies to show positive.
Amazingly, my babesia test WAS positive.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Thanks for input. It all does help. I saw a NEW LLMD in MA today. She was great. She also thought I should not spend any more money on testing but should add Bactrim asap to hit Bart. (can't take levaquin or rif because of issues with knee replacement and ruptured ligament.) She is convinced I have Lyme + Bart & thought tests weren't necessary. Instead, see what happens after adding Bactrim to the antibiotic list. I'll make a note of WB...tests #188 & 189. And Fry Labs if I need to test for Bart.
Now just praying that if Bart is hit with Bactrim the herx isn't too bad in brain. (Can't imagine feeling any deeper depression type stuff than I already have.) :/
Thanks and Bless you all!
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Sounds great, Beagle! Looks like you found someone who really knows what she's talking about.
TF says Bactrim helped her get well, maybe it will do the same for you. Just watch for side effects (particularly any rashes) and you should be fine..
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Agree! Beagle a large percentage of our ticks carry filaria worms.
So when you feel like you can work in some parasite treatments I found they really helped.
I feel like it is often overlooked as they survive antibiotic treatment/the bugs could survive.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Now if only the antibiotics could also effect knee replacement infection. Still don't know if it is Lyme related or not, but praying for a miracle. Dr. H in MA, says not likely but possible that treating the Lyme, etc. could do something for the knee. (I'm in denial avoiding the knee issue cuz cannot go through that kind of revision...got to get back on my feet to work somehow!)
Activated charcoal to help with herx? Someone here mentioned that.
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You need something to get at the biofilms for your prosthetic knee.. That may allow the abx to get at the bacteria.. Try Lumbrokinase, Serrapeptase, or Nattokinase.. Even eating Xylitol has been shown to disolve biofilms... There's also Wobenzyme..
posted
Lululymemom, All that you listed I figure I can find on line? I haven't a clue what they are, liquid, pills or....?
Posts: 348 | From MA | Registered: Dec 2010
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Actually the high sed rate, CRP and CPK all point to infection/inflammation -- NOT demyelinating disease.
Of the supplements listed by LuLu -- Wobenzyme is the one that has historically been used for many years in Germany for arthritis so I would probably try that one first. Best price is probably from vitacost.com
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Beagle, yes you can get them all online. They are forms of fibrinolytic enzymes.
Bea, is correct that Wobenzyme has been used for chronic inflammation and is very good for arthritis.
Lumbrokinase is also very good and all of these can be purchased on iherb or vitacost..
posted
Thank you for clarifying! I will order on line. It would be a miracle if anything could break up biofilms in new knee replacement, cuz there's no way I'm going thru a revision surgery. I have zero trust in a successful revision.
Thank you again
Posts: 348 | From MA | Registered: Dec 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I agree, I would try everything possible first before considering another surgey. You might consider showing this article to your new LLMD.
Here is a link that describes the formation of biofilm after knee replacement.
Standard antibiotic therapy typically alleviates symptoms caused by planktonic bacteria released from the biofilm but fails to kill the bacteria in the biofilm. Therefore, successful treatment of prosthesis infections with retention of the implant must incorporate treatment against both planktonic and sessile bacteria.
I should also add that you must use a biofilm binder like fiber, clays, zeolites, chlorella, modifilan, apple pectin, butyrate, chitosan, bentonite and activated charcoal.
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