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Posted 12/21/2016 8:37 PM (GMT 0)
OK - I haven't been on for a week or so, as I was going to get retested and see what it said before I went any further. I had a deer tick feeding on me for 3 to 4 days and got put on 3 weeks of 100mg Doxy twice a day. I got very sick before I even knew the tick was on me with the worst vertigo ever and severe pain in my knee right above the bite. I got even sicker on the Doxy with everything you can think of headache, insanely stiff painful neck, joint, nerve attacks, etc. I saw an IDS during the Doxy course who said: "The test is negative but based on your bullseye rash and your symptoms, I say this is what I would call early Lyme Disease so continue the Doxy (had ten days left) and retest when you finish. Be careful not to listen to those people online." I waited a week after the Doxy ended and retested. I am still very sick and I called that office and told them I need more Doxy and they said the test is negative and will not give me more until I see him next week - and quite frankly I never wanted to see him again. Is this even possible to keep testing negative and be so sick? What is going on? WHY is this happening?
Posted 12/21/2016 9:04 PM (GMT 0)
Welcome!!! So what happens is if you have had the infection for a long time your immune system weakens and stops making antibodies. The lyme test you did measures these antibodies which is why you got a negative result. You can find a lyme doctor by requesting a referral on ilads.org. many also self treat with herbs!
Posted 12/21/2016 9:06 PM (GMT 0)
I'm sorry - I just need to know if a person could keep testing negative with these stupid Quest Diagnostics "Lyme ab" tests. I KNOW I am sick and this is making me feel insane, like I am imagining it. I begged the lab for info of what exactly they were testing and they claimed they couldn't tell me. I filled out a form that allows them to send me the test results and I, myself have not gotten them yet. However the IDS's office has gotten them and the "Dr." isn't there but the desk person said it's negative and therefore no more antibiotics unless and until I see HIM. Meanwhile I am spinning the same way as when I was hosting the tick, and nauseas and sick all over.
Posted 12/21/2016 9:27 PM (GMT 0)
OK - here goes the back story. I am 51 years old living in the Lyme capital of the world. I had a deer tick feeding on me for 3 to 4 days and figured it out on 11/22/16 - went to ER, same day, got titered same day, started Doxy same day. Prior to this, when I was 19 years old in 1985 - I suddenly started to go crippled. My left side of my chin developed a patch of strange numbness and weakness, my right forearm and hand got the same symptoms along with pain and loss of grip strength - where my hand would just stop holding cups and my ability to write disappeared, my left shin had the surface numbness, and a strip on the back of my head on the right - got the same numbness and tingling. I went to a neurologist who is dead now. He put me in the hospital for tests for 3 days. Everything was non-conclusive. My spinal tap came back positive for an illness/virus/bacteria and the Neurologist said that he didn't have a name for it and that I could have it forever, or it could remit and relapse, or it could relapse worse, or it could go away forever. The guy is dead and there are no records. I will never have another spinal tap - it was awful. This condition has relapsed and remitted all these years as my physical pain, pain to the touch, and mental issues got worse and worse - into full blown PTSD and Agoraphobia. My therapist who had Lyme disease herself has expressed for 6 months now, that she thinks I have 30 year old, undiagnosed, Chronic Lyme Disease.

I am giving everyone the shortest version possible. I ignored what she suggested because I hate doctors and how they treat people. I have had Lyme Titers over the years from the ER and they have all been negative and I told her that and she said the tests are faulty. The IDS - that I went to this time after this bite, said that if I had LD all these years, I would've gotten positive results from titers and: " You have early Lyme Disease which is very easy to treat and cure. Finish the antibiotics and...Be careful not to listen to those people online."
Posted 12/21/2016 9:51 PM (GMT 0)
Most of the time tests from say Quest or Labcorp are not specific enough to pick up different strands. The somewhat golden standard in testing is the use Igenex labs. It doesn't always pick up especially if your body has diminished ability to fight it. If I'm understanding the problem correctly (sorry bad brain fog) I'd say that finding a lyme literate physician would be a good route to go. You could start by requesting a listing of LLMDs in your area from the ILADS website. Sorry. Just realized that someone else said that. But it's still a good way to go.
Posted 12/21/2016 9:57 PM (GMT 0)
No - thank you both for your advice. I am just trying to find one who takes my insurance. I guess I am just blown away that I can really keep testing negative ( even after a FRESH and illness causing.... deer tick hosting 72 hours ) and be sick with Lyme Disease. That IDS based his WHOLE THING on...."If you had Chronic Lyme - you would have tested positive along these years". He went over NOTHING with me - no bands, no examination of me, nada, nothing!!!!
Posted 12/22/2016 12:32 AM (GMT 0)
dismissed - I quickly read the posts...have you ever been tested through Igenex Lab?

(sorry if I missed it)

If not, then you might want to consider it. For the Lyme Western Blot IgM and IgG - it's $210.
Posted 12/22/2016 12:37 AM (GMT 0)
No. I wish I could (severe poverty). All these years and then with this new infection which gave a bullseye (I showed you in an email) after having that deer tick on me for 3 or 4 days until I pulled it out (thought it was a tiny scab in the middle of a big painful bruise).
Posted 12/22/2016 12:41 AM (GMT 0)
Thank you for answering me Girlie. Would a person really. really keep testing negative every time - even after a fresh infection, even after 3 weeks of ABX?
Posted 12/22/2016 12:52 AM (GMT 0)
Yes, they REALLY can test negative every time.

...and your three tests were how close to each other?
Posted 12/22/2016 12:52 AM (GMT 0)
And, yes your pictures show a bullseye rash.

Do not lose those photos.
Posted 12/22/2016 1:14 AM (GMT 0)
I had one test on the 22nd of November and the ELISA part was unequivocal or equivocal (or whatever is the one that is questionable or borderline ) and it got automatically sent to the Western Blot part. The Western Blot came back "negative" though I didn't even see what it looks like or what makes it negative or positive. The same day I got the blood drawn, for those - I was started on 21 days of Doxy 100mgs bid. Then - I finished the 21 days of Doxy a week ago yesterday and had this prescription from the IDS that said "Lyme ab" - and I had it done 7 days after the Doxy ended, so this past Monday. The IDS's office said on the phone today (when I told them I was sick and needed more Doxy) - that it is negative.
Posted 12/22/2016 1:15 AM (GMT 0)
Is there not some kind of law that permits you to have a copy of your test?? It is ridiculous that not everyone is able to get a copy of them. That includes me. I had a test in '92 and a test in 2015 and I can't get anyone to give me a copy of them. I've asked my Internist that ordered the last test, I've asked the lab in person that drew the blood. I still haven't seen anything.

dismissed if you can't afford an igenex test, you aren't going to be able to afford an LLMD or ILADS friendly doc, and may have to to what some of the rest of us do and take our healing into our own hands, and that starts with lots of reading, list making on your part to prioritize your symptoms (worst to least) and begin a plan.

I just don't know what you're going to do if you want to start with antibiotics. To really do it right you need at least two to start with. Mono therapy (one abx at a time) wasn't a lot of help for me. Especially since I had been infected for so long. Or you could start with herbs.

But your first start is concentrating on your diet, your stress levels, building up your immune system. Your body's defense system is your best ally.
Posted 12/22/2016 1:17 AM (GMT 0)
I have yet another order form for what I think is the same exact test, from my PCP that is dated: On or around 12/27/16. But I feel like "What is the point of this test? Why even have a test exist - if it sucks like it does?"
Posted 12/22/2016 1:24 AM (GMT 0)
Is the test something you will be paying for...or is it covered?

If it's covered..then no harm in 'trying again'.
Posted 12/22/2016 1:25 AM (GMT 0)
Again, and I don't know if I suggested this to you or someone else, but if you have any copies of previous tests you can post them here for a more 'educated' reading of it. Not by me, but those that have been here longer.

Your tests could very well show you are positive, but not necessarily by the ridiculous CDC guidelines that all Drs. are familiar with, and many go by.
Posted 12/22/2016 1:35 AM (GMT 0)

julymorning said...
Again, and I don't know if I suggested this to you or someone else, but if you have any copies of previous tests you can post them here for a more 'educated' reading of it. Not by me, but those that have been here longer.

Your tests could very well show you are positive, but not necessarily by the ridiculous CDC guidelines that all Drs. are familiar with, and many go by.

Yes, julymorning - good point -even if not positive...there could be indications - i.e. some positive lyme specific bands.
Posted 12/22/2016 1:44 AM (GMT 0)

Girlie said...

julymorning said...
Again, and I don't know if I suggested this to you or someone else, but if you have any copies of previous tests you can post them here for a more 'educated' reading of it. Not by me, but those that have been here longer.

Your tests could very well show you are positive, but not necessarily by the ridiculous CDC guidelines that all Drs. are familiar with, and many go by.

Yes, julymorning - good point -even if not positive...there could be indications - i.e. some positive lyme specific bands.


Girlie, we've seen her bullseys rash photos. We would be big bucks she has Lyme, on those alone.

Wouldn't you advise her to save up for an Igenex test if she could find any kind of Medical dr. to sign off on it? Even if she couldn't convince her current Drs. to accept an IgeneX test, the evidence plus the photos would help her get some treatment started sooner with someone?


ETA: I'm sure you have already suggested that, but Dismissed needs the right push when her mind can accept it. I think we're getting there.
Posted 12/22/2016 1:55 AM (GMT 0)
Yes - you guys, the Quest Nondiagnistics' tests are covered. No - I have no copies and begged the lab this past Monday to even just TELL ME, specifically what the test that was ordered, that they were about to draw my blood for - would check for ...and they said they could not tell me. I signed papers which they claimed would make it possible for me to get my results in the mail, but that it would take 2-3 weeks for ME to get them - and the IDS ( whom I only met once, who did not examine me, and who spent 5 minutes with me, during which he told me to stay away from "those people online" ) would be getting them in 2 days. He's the one who said: "You only have EARLY Lyme disease even though your test is negative - based on the bullseye and your symptoms, otherwise your titers would have been positive at some point in the past." This all drives me insane and I can't afford any of it - because I'm agoraphobic now and poor, and have been treated terribly by Md.s my entire adult life for anything that has ever been wrong. For 30 years I have had terrible pain and flare ups of weakness and numbness and tingling ( aside from clear cut orthopedic pain, from being hit by drunk driver from behind ), and depression, anxiety/panic ( from a super young age ) that got WORSE with age, instead of better and is now PTSD and Agoraphobia - with far too many episodes of depersonalization and the sensation of my brain cracking, and severe sensory overload. I'm sorry if I seem crabby or ungrateful. I am VERY grateful that I found all of you!!! I just get where I can't think straight and communicate and feel like I am whining and unable to concentrate. I get scared that people will get fed up or frustrated with me.
Posted 12/22/2016 2:03 AM (GMT 0)
Have you filed for disability? Sounds personal but it's really impossible to make suggestions to people if they have no money coming in at all.

My daughter in in that boat and works as much as she can (while fighting gall stones too), to get money coming in by doing online surveys.

I am beginning to sound like a spammer, lol....I'm so sorry. My attempts to help people help themselves.

Anyway, many if not most of your self care can be done from home and at home.
Posted 12/22/2016 2:19 AM (GMT 0)
Yes - I am on SSDI, but mine came out to only ten dollars more than SSI per month (from my earnings). I've had 42 jobs on the books - but this whole thing that I described for 30 years, has interfered with my life and all jobs, over and over and over - again.
Posted 12/22/2016 3:15 AM (GMT 0)
Hi , first of all , your not alone. Lyme, and all the questions, doubts and worries that go along with it are shared by all of us at one time or another. Please stay hopeful and brave. I have tested negative for over a year and my General Practitioner would not give me any antibiotics. I also still test negative(Quest LAb), but I have Lyme. However now, I am concentrating on just fighting it with all the knowledge I have gained from this forum, Stephen Bruhners protocol, and my ilads doctors help(finally found him in Sept. thank God).
On the ilads website I am pretty sure I saw a link for financial help for testing you would have to check it out.
I found this also :http://lymediseasechallenge.org/financial-assistance/

If you live in the NorthEast I believe the Northampton MA , Sturbridge Ma and the Berkshires area have support groups also. Take care and hope you find some answers.
Posted 12/22/2016 4:25 AM (GMT 0)
Elisa tests do not test bands. And my copy of the Elisa test just says lyme - negative. It is just a stupid piece of paper.

And insurance will generally pay for this test.

Also most regular doctors won't order the Western Blot unless you test positive on the Elisa.

And that is the stupidest thing I have ever heard of!!! If you test positive, then you can pay for another test to really confirm you are positive???

Enough ranting about regular medicine...... they just don't know what they don't know.

Now suppose you go and get an Igenex test and pay the $210, what will you do when it says CDC and Igenex negative????? But at the bottom of the test it says, <Lyme is a clinical diagnosis and the results of this test should not determine if you have lyme or not>

Holy smokes! So in other words, your bull's eye rash is evidence and better than any test you can ever have!! Nothing else gives a bull's eye rash and a good lyme doctor will treat you based on that alone.
Posted 12/22/2016 4:37 AM (GMT 0)

dismissed said...
OK - here goes the back story. I am 51 years old living in the Lyme capital of the world. I had a deer tick feeding on me for 3 to 4 days and figured it out on 11/22/16 - went to ER, same day, got titered same day, started Doxy same day. Prior to this, when I was 19 years old in 1985 - I suddenly started to go crippled. My left side of my chin developed a patch of strange numbness and weakness, my right forearm and hand got the same symptoms along with pain and loss of grip strength - where my hand would just stop holding cups and my ability to write disappeared, my left shin had the surface numbness, and a strip on the back of my head on the right - got the same numbness and tingling. I went to a neurologist who is dead now. He put me in the hospital for tests for 3 days. Everything was non-conclusive. My spinal tap came back positive for an illness/virus/bacteria and the Neurologist said that he didn't have a name for it and that I could have it forever, or it could remit and relapse, or it could relapse worse, or it could go away forever. The guy is dead and there are no records. I will never have another spinal tap - it was awful. This condition has relapsed and remitted all these years as my physical pain, pain to the touch, and mental issues got worse and worse - into full blown PTSD and Agoraphobia. My therapist who had Lyme disease herself has expressed for 6 months now, that she thinks I have 30 year old, undiagnosed, Chronic Lyme Disease.

I am giving everyone the shortest version possible. I ignored what she suggested because I hate doctors and how they treat people. I have had Lyme Titers over the years from the ER and they have all been negative and I told her that and she said the tests are faulty. The IDS - that I went to this time after this bite, said that if I had LD all these years, I would've gotten positive results from titers and: " You have early Lyme Disease which is very easy to treat and cure. Finish the antibiotics and...Be careful not to listen to those people online."

Your therapist seems to be the closest of all of them to being correct, and it's more than I ever got.

Are you still seeing her, or able to? Did she make any suggestion for you as to what you should do?
Posted 12/22/2016 4:54 AM (GMT 0)
I know somebody who does bee venom therapy in conneticut for cheap...?
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