posted
IIRC, Band 41 is the pathogen propeller and non-specific to Lyme. If I was in your shoes and could afford to do so, I would retest... but I would also test for co-infections too (at least the ones that are equipped with a flagella). +++ is a strong reaction, something caused it.
If you do test again, ask your LLMD for his opinion on a 1-2 week doxy Rx before testing Some LLMD's like to do that because it is purported to help weakened immune systems create detectable antibodies more readily.
Posts: 58 | From Virginia | Registered: Nov 2013
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posted
I also had Mycoplasma positive, but he said many healthy people do too
I had psotive for Anaplasma too
and a postive Elisa which again no one seemed to impressed with
Posts: 61 | From DE/PA | Registered: Jul 2013
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
No on lyme western blot. I got positive on Igenex in '02. No sense wasting money retesting, I'm still having sx, waste of money and time.
Oh, I just remembered in '06, my PCP did order a Westen Blot, because I did have 2 more embedded ticks and got some horrible symptoms after those bites. The lab, Lab Corp did ELISA and it was negative.
I called the head of the lab, a Doctor and asked why did you stop with ELISA. He said if he would have known I had a positive Lyme Western Blot in the past he would have done a complete Western Blot??????
I wanted to scream you idiot. How many other people have you given a negative test to because you stopped at the ELISA and didn't go band by band.
I was so angry I don't know how I contained my anger but I did because I wanted to give this Lab Doc a Lyme Education on Western Blot.
I've tried more than 3 times to get a positive on Bartonella and Babesia because no doubt based on symptoms I have both.
The bacteria those 2 ticks gave me in '05 was a mega dose of Bartonella. Can't get lab test to confirm that but sx were no doubt about it. There are so many strains of bart, 100 known strains of lyme in US alone.
I've tested positive for HHV6, mycoplasma Pn, and many other viruses. I've also test high titers for strep.
Labs that are used by usual doc are generally good for simple blood tests and even that is sometimes questionable.
lucy, yes when one is healthy most people have myco Pn, etc etc. When the immune system is compromised from auto immune illness, yes lyme is and will become known as an auto immune illness...having these viruses and other bacteria is a huge deal for our bodies.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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IgG Igenex made an error on test and didn't report.
LLMD said why bother having them test the IgG over again? Almost 3 1/2 yrs of symptoms and a IgM that reads like this one........
no doubt about it, you have Chronic Lyme Disease. And your results show it's been raging in you for a while, your anti-bodies are thru the roof.
This LLMD is the lyme doctor that has a very informative write-up on how to read the Western Blot line by line. His research shows high IgMs are typical of chronic stages of Lyme Disease.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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thanks for writing... but your results to me are filled with so many +'s ... I only have one +
was does "anti-bodies thru the roof" mean.. when someone has been sick for along time ( I am over 8 yrs )
does that mean the changes of getting ='s changes or goes down ?
Posts: 61 | From DE/PA | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
lucy, I feel sure you have lyme disease. Here is why:
positive ELISA some very important weak positives on the WB you also have ehrlichia (anaplasma) which is a coinfection of lyme you also have mycoplasma you feel so horrible you have 70 spots on your brain you have checked out everything else and you don't have any other diagnosis
Have you read the Burrascano Guidelines? If not, they are here:
pages 25 and 27 talk about ehrlichia which is a very common coinfection with lyme. People don't generally get ehrlichia without also having lyme.
Also, have you read the explanation of the Western Blot at the top of Medical Questions under the topic "Important Info of Lyme and Coinfections"? The post is here:
I know people desire to get glaringly positive lyme test results, but once your immune system has been compromised by lyme (takes about a year to do so, according to Burracano), the lyme tests become LESS sensitive.
You know the Western Blot is not looking for the lyme bacteria. It is looking to see if your immune system has made antibodies to lyme. Once your immune system has been so weakened by years of lyme, it doesn't make many or any antibodies anymore. So, those sickest with lyme often get negative tests or very, very weak positive tests like yours.
I assume your test was done at Igenex and that you were also tested for babesiosis and bartonella, 2 different tests for each. If you weren't, then you didn't get the full coinfection panel. You could ask for that.
I'll bet if the treatment was making you feel better you would not be having so many doubts. It is normal to have doubts when the treatment isn't working. I have had folks write about this same doubt to me and they had a glaringly positive WB test. But, they had tried treating for a year and ran into so many complications and very, very little improvement.
Here is a quote from the explanation of the Western Blot:
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93."
You have indeterminates (weak positives) on 23-25, 31, and 39. So, you have lyme.
Band 39 is the lyme bacteria. Nothing else, no other type of borrelia, can produce this. So, if you have 39 even weakly, you definitely have lyme disease. Read all about it when you read the full explanation of the Western Blot.
That explains why you have such a strong response on band 41 which is nearly always positive if a person has lyme. (But, as others have said, other things besides lyme can cause a positive band 41.) So, in your case, the diagnosis is clear, at least to me and your doctor.
Hope you get peace of mind about the diagnosis. If you compare your doctor's treatment to the Burrascano Guidelines and it doesn't line up, I suggest you look for another doctor.
I and about 5 of my friends got rid of lyme and its coinfections by going to doctors who follow the Burrascano protocol. It is the most successful protocol in the world and is used by doctors in many countries.
When you have lyme disease, you MUST become an educated patient. Otherwise, you can waste years with an inadequate doctor and on inadequate treatment. I did that for 2 years before I wised up and STUDIED the Burrascano Guidelines.
Then, I switched doctors, got tested and treated for ALL my diseases (not just the lyme), and I was finished in 13 months. That was over 8 1/2 years ago and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
As you will see in Burrascano, one antibiotic alone will not get rid of lyme. It takes at least 2 high-dose antibiotics at once. Each antibiotic must be known to kill lyme in different forms. Lyme can be in at least 2 or perhaps 3 forms. No one antibiotic can kill all the forms.
So, if you just take one med, the lyme just changes into a form that that med can't kill. That's the game I played for 2 years. Plus, I got no treatment for my coinfections for that 2 years with lousy doc.
The doc is the key to getting rid of this horrendous disease. Can't emphasize that enough.
If you are having trouble comparing your treatment to the Burrascano Guidelines, write to me privately telling me all the meds you are on and the dosages of each and I will tell you if that treatment meets the Guidelines.
"An unfortunate corollary is that serologic tests can become less sensitive as the infections progress, obviously because of the decreased immune response upon which these tests are based. In addition, immune complexes form, trapping Bb antibodies. These complexed antibodies are not detected by serologic testing. Not surprisingly the seronegative patient will convert to seropositive 36% of the time after antibiotic treatment has begun and a recovery is underway. Similarly, the antibody titer may rise, and the number of bands on the western blot may increase as treatment progresses and the patient recovers. Only years after a successfully treated infection will the serologic response begin to diminish." (page 4 of Burrascano Guidelines)
Posts: 9931 | From Maryland | Registered: Dec 2007
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map1131
Frequent Contributor (5K+ posts)
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posted
Yes, lucy I had been on every abx oral combo from day 10 of illness.
Didn't realize until much later that PCP and myself didn't realize my simple health issues that came about 4-6 mths prior were the early stages of Lyme & co.
I was even on IV rocephin for 6 weeks prior to Igenex Western Blot. My PCP and I tried everything we could. 2 weeks after IV, I went to LLMD and that's when the WB test was done.
My insurance company would not allow anymore IV abx. Sad state of affairs. I was 8 hrs away from this LLMD one way, so he preferred not to do IV abx. So LLMD put me on oral abx that had either been helpful in my past and mainly he put me on oral abx that I'd not tried. Oh my!
I didn't read your other posts. TF did great job of summary on your history. LLMDs can make things better.
We do things different with Lyme Disease because the insurance companies can cause us extreme stress. Don't like to give them weapons to use against us.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
TF, that was so informative and well written.. thank you for taking the time
it means a lot to me (:
( i actually have app. tomorrow with LLMD )
Posts: 61 | From DE/PA | Registered: Jul 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Lucy,
TF and Pam summed it up nicely.
In my opinion, from what I've read and from folks in my support group, and folks on this forum,
The bands you have scream "Lyme"
The weak response (ie:not a lot of reactive bands), screams "chronic".
If I were in your shoes, I would talk to your doc about combo meds, high dose. Either oral or IV or both.
I had reactive bands on my IgG and IgM from Igenex. Not enough for an Igenex positive or a CDC positive.
I took doxy and tinidazole and biaxin for 6 weeks and my doc retested my IgM.
It lit up like a Christmas tree.
In BC, the insurance and the mainstream docs scoff at Igenex, so it didn't make life easier for my treatment on those fronts.
But it did make life easier in my brain. Finally, after years of suffering, I had proof I wasn't cuckoo. It also helped me come to terms with the idea that I need long term, high dose abx to knock it down.
So if you are like me and need that positive for your brain, maybe do an abx challenge with doxy and a cyst buster, and retest your IgM.
But if you're tight for cash, then maybe research the bands you reacted to, so you can solidify the lyme dx in your mind.
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No need for you to re-test for lyme.
You may never get that CDC gold star - it's nearly impossible set of requirements they have designed that have nothing to do with truth. Forget the CDC "thinking" - consider, instead, how proper diagnosis is made by an ILADS educated, experience LL doctor.
Your test results and clinical presentation / symptoms could not be much clearer.
No need for you to re-test for lyme. It would be a waste of money. There are many more important aspects that you will need that money for.
You had a positive ELISA. You can't get much more positive than that. You have the classical clinical presentation, etc.
Ditto to the reasons TF gives as to why you do not need another test for lyme:
positive ELISA
some very important weak positives on the WB [I'll add that even a weak positive IS positive, indeed - it's there]
you have ehrlichia (anaplasma)-coinfection of lyme
you also have mycoplasma you feel so horrible you have 70 spots on your brain
you have checked out everything else and you don't have any other diagnosis
(TF's points) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For others who may wonder where we saw your other tests, here's your previous post from 26 September, 2013:
Igenex IGG: 31-IND, 39-IND, 41+++ -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm a bit concerned that the doctor you are seeing may not be fully ILADS educated if you have so many questions about the basics. You keep suggesting in various threads that he is not, uh, clear or whatever . . . that he is "willing to treat" but not enthusiastic or with strong statements about it all (paraphrased).
Now, maybe that is just a matter of communication and interpretations between the two of you. He may be entirely capable. That he's taken you this far seems to say he knows the ropes. Just be sure.
Of concern: you posted previously that " going try try doxy oral" and your LLMD was treating you.
Is that IT? Just doxy oral? If so, that is NOT an ILADS educated LLMD. Now, that was last summer and I'd like to assume that you went on to a full combination protocol. ??
If you connected with this doctor last July and you are still "hemming and hawing" around, it does not sound solid to me.
Now, treatment can take many years (and you still do not have to re-test for lyme during that time) and treatment will go through many rotations, twists and turns. But you seem stuck and not even getting out of the driveway in 6 months time.
I know that there are no LLMDs in Delaware. So, be sure to connect with this group to be sure that your doctor is, indeed, the best you can get to:
LDASEPA Lyme Disease Association of Southeastern Pennsylvania (ILADS minded) -
[ 01-06-2014, 05:20 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: "do i continue to push this Lyme Dx or look towards some other auto immune or early MS logic?" (end quote)
It's important to be aware that "autoimmune" disorders and "MS" can be CAUSED by lyme, other tick-borne disease and other chronic persistent stealth infections.
"AutoImmune" and "MS" are very often MISdiagnoses that miss the real cause. Treating the cause can turn things around.
This is why it's so important to be with an ILADS educated LLMD who knows all that, how to sort it all out and what to do about it.
They will also know when / if other specialists would be needed on the case -- and where to find those who would know enough about lyme / TBD to be able to know the implications of what they see. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
lucy, doubting the illness is pretty typical in the early stages because you feel like goodness the medical establishment has so many doubtful things to say about this lyme disease and I've taken abx and I'm still ill?????
They, the medical establishment we are up against says, you've had x months of abx. It's not lyme, it's something else.
Even my PCP went looking for something after 2 mths of abx and I wasn't improved. He found I tested postivie for Epstein Barr Virus.
Aha, that's why you're not getting well. No abx needed. Rest blah blah blah. Two months without abx I had 45 symptoms of lyme disease changing from day to day, week to week.
I went back to my PCP with the list and all my checks and told him (by this time I've done started my education), it's lyme disease, nothing else explains what all is going on with my health.
Thank God, my doc said "well I was hoping it was just EBV, but afraid that it was now Chronic Lyme Disease."
I agreed and we made a plan on abx. I so wish others were so lucky to have a doc like I did. He sent me to a ID specialist.
ID said I had Toxic Shock Syndrome, I happened to mention it was my time of month and sx kept me from using tampons. Really? Test was negative.
Rheumo specialists, when I had a fever 102 degrees at appt. and had run a fever daily for months. He ran all these tests and everything was negative. He told me I had a virus and as soon as that virus ran its course, all my pain in joints and body would be gone.
I'm still waiting for that virus to run its course. You don't know how bad I've wanted to make an appt and see if I've waited long enough.
No I quit running fevers or lets say I quit using thermometer when I felt feverish. Why bother?
So please don't let 'em take you down the auto-immune path of MS, etc etc. Yes, you have MS symptoms. MS is cause unknown illness.
Lets treat the cause and not the symptoms. You are in charge of your own healthcare. A doctor is a tool you use to help you gain your health again.
A good LLMD is worth their price. They treat the cause of sx.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
thanks again for all your feedback, it helps me so much...
So back in Sept. I saw a Dr who I don't think was a true LLMD.
The Dr I see now in Wayne PA, I believe is.
I had appointment today.
He wants to keep the Ceftin going, and is adding Rimafin and Zith- oral
( He had previously tried to add bactrim which i could not tolerate ) Doxy was from the "other" Dr
Does this sound like apporiate path of a LLMD?
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
lucy, what's good for one might be not so good for another. We are all very different in the type of bacteria we are carrying and controlling our bodies.
Everyone's immune system is different. Our tolerance level is different.
This is trial and err for everyone that starts the journey, in the middle of the journey and even the ending of or lack of ending of the journey.
Maybe somebody doing abx protocol would be comfortable telling you yeah or nay. Nobody can tell you how your body is going to react to that combo.
We can only tell our experience if we had done that combo. You might have great results, you may not be able to tolerate it.
Oh yeah, protocols differ from LLMD to LLMD. They all have their opinions on protocols. Some do follow the Dr B protocol others have their own protocol.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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As I mentioned I really like him but he is so laid back.
If I said I want to do IV he would say ok not problem, if I said I want to try "XYZ", I think he would basically ok to just about anything
im like a child that whats the parent( DR ) to guild them , and instead the parent is acting too much like a friend :/
Posts: 61 | From DE/PA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm no expert on the Rx but a combination is a good sign.
What about addressing the CYST FORM? Was that brought up in discussion?
Be sure you have proper support, too. Zith can clobber ears, so liver support MUST - MUST be there first, if possible and all during and for months afterward.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
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Member # 14183
posted
Are you sure the med is Rimafin? When I search that, it mentions Rimifin as a med not given in the U.S. And, it also seems to be a dog medicine. It is an NSAID, so it is not an antibiotic.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Phoiph
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