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Help me read my test results. 2 dr's say positive 1 dr negitive. PLZ HELP

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Posted 3/28/2016 7:01 PM (GMT 0)
Can someone please help me read my test results. I've had two doctors tell me I am positive for Lyme and I've had the infectious disease doctor that I was referred to tell me that I'm negative. I have no energy I can't get out of bed when I first wake up in the morning I'm extremely stiff and hobble to the bathroom Untill my blood starts flowing in and I can then move easier. I have numb and tingling in my toes. I suffer from headaches almost daily.

I have had so much blood work done and everything pretty much comes back normal. I don't know what else to be tested for and I don't know what's wrong with me. it is so frustrating to feel like this every day I hope that somebody can please help lead me in the right direction thank you for your time.

Lyme IGG blot. NEGITIVE
Lyme IGM blot. POSITIVE

18 IGG negitive
23 IGG negitive
28 IGG negitive
30 IGG negitive
39 IGG negitive

41 IGG POSITIVE

45 IGG negitive
58 IGG negitive
66 IGG negitive
93 IGG negitive

23 IGM POSITIVE
39 IGM POSITIVE
41 IGM POSITIVE
Posted 3/28/2016 7:07 PM (GMT 0)
Hi, as I can see you are new here :)
I recommend you to read the topic: New To Lyme?.......Start here
you will find a lot of answers

When did your symptoms start? Have you consulted LLMD? If not, I recommend you to make an appointment, because he will help you in the best possible way and give you appropriate treatment, as ordinary doctors do not know much about Lyme.
Posted 3/28/2016 7:12 PM (GMT 0)
My symptoms started last June with extreme chronic fatigue and headaches it was so bad I went to the emergency room and I begged them to test me for everything and figure out why I was so tired all the time and had no energy. I quit smoking thinking that would help and the incidentally in the hospital found that I had H py Loria,a stomach bacteria.

I ended up being prescribed opiates because of my back pain which I found also gave me energy. After eight months of being on opiates I decided that that wasn't what I wanted to continue to do after being off of them for three weeks and my body not returning to normal the chronic fatigue returned I couldn't get out of bed the headaches returned. I feel that I have been masking my symptoms for the last eight months with opiates. I went back to my doctor and asked for new blood work that was when we decided to test for Lyme.

What is a LLMD? I have insurance but I have to get referrals for any specialists my primary which told me I was positive for Lyme referred me to an infectious disease Doctor Who I see this week but says she will not treat me for Lyme and that I am negative for Lyme based on my test results. I just feel so frustrated. I will definitely start reading the forums
Posted 3/28/2016 7:18 PM (GMT 0)
Well, you got a CDC positive so I wouldn't question it. Bands 23 and 39 are lyme specific. Very hard to get a positive through Labcorp or Quest. If you are sick with Lyme symptoms and everything else is coming up pretty normal, then I would quit searching and start treating. It will take some time before you notice anything or feel better. Probably a good 2-3 months so hang in there. And it will likely take a few different antibiotic combos. Or, you could try the herbal route or a hybrid of them both.

You should also be tested (or clinically diagnosed) for coinfections. These can complicate treatment.
Posted 3/28/2016 7:26 PM (GMT 0)
It really is a medical travesty. I am not sure why Infectious Disease doctors keep denying Lyme Disease. You had a POSITIVE test. What was their explanation for it? I can't imagine someone testing positive for HIV and the ID doctor telling them they are negative. IGM means a current infection OR active infection. IGG response is when the infection goes chronic which happens fairly quickly.
Posted 3/28/2016 7:31 PM (GMT 0)
Welcome to our community, Jeanetteorlando!

You aren't negative - based on those lab results.
23 IGM POSITIVE
39 IGM POSITIVE
41 IGM POSITIVE

As K07 stated - that is considered CDC positive. Does it not say that you are positive on the test results?

A LLMD is a Lyme Literate Medical Doctor. A LLMD is knowledgeable in diagnosing and treating lyme disease.

An Infectious Disease Dr. will not help you, sorry.
We can help you find a LLMD - just start a new thread titled: "Looking for LLMD in/near_____" and fill in the blank.
Members can send you recommendations.

You will need to enable your email option, so names can be sent to you privately. We do not post the names of the LLMD's on the forum - for privacy reasons.

It would be helpful for you to read through the thread at the top of the page titled: "New to Lyme?..Start Here!"

I hope you stick with us here...keep reading and educating yourself. Ask any questions you have...that's what we're here for!
Posted 3/28/2016 7:46 PM (GMT 0)
Ok you have given me some homework to do. thank you for somebody finally acknowledging that it's not in my head and there is something wrong with me.

I don't know where I would have gotten Lyme. I lived in Costa Rica in 2006 and would wake up picking ticks off me in the middle of the night but don't ever recall being bed and have not had any symptoms of Lyme in all these last six years. Last May I got in our lake and started pulling weeds for three or four days up to six hours each day in the water I got a mild sunburn and was bit by something small on my arm I thought it was a spider I brushed it off of me immediately. My left arm swelled up and within the next few days or week after that I had a rash all over my back but I still don't recall ever having a tick on me that bit me especially one being on me for more than 24 hours or ever having the red rings. But it was last June that the symptoms started about a month after clearing the lake out. I wonder if there are other parasites but I could've gotten that mimic the symptoms of Lyme? Or even test positive?
Those symptoms lasted for about a month and then went away once I started taking opiates for my back pain because they gave me energy. I can't stay on the opiates and they're not really working anymore for example today my alarm went off at 8:30 this morning to take my daughter to school and I ended up sleeping till 1 o'clock in the afternoon I'm just exhausted all the time. I will definitely stick with this forum and continue to try to find answers and feel better. Thank you again
Posted 3/28/2016 7:51 PM (GMT 0)
I see my primary care physician tomorrow she is one of the doctors that interpret the results as being a positive and that I do have Lyme. She will write me the anabiotic's. Is there any particular cocktail that anybody's particularly familiar with that works really well?

When I have the H pylotia last June I was prescribed a heavy duty anabiotic to kill that. I wonder if that's what helped some of the Lyme symptoms go away and maybe now they are just returning maybe we only partially knocked it out back then not even knowing that I had it
Posted 3/28/2016 7:52 PM (GMT 0)
That bite you got could have been a tick. They are very tiny when in the nymph stage.

The arm swelling and the rash - along with symptoms starting a month later - is indicative of lyme.
Your test results back that up.
Posted 3/28/2016 8:17 PM (GMT 0)
I am so sorry you have lyme. But welcome here.

I am guessing you are from Florida so here is a list of names for LLMD's in that area.

/sites.google.com/site/lymedoctors/florida

If not Florida, let me know where you are from and we will see what we come up with. Some LLMD's take insurance and some don't. You have to call and see which do.
Posted 3/28/2016 9:07 PM (GMT 0)
Yes I'm from Orlando Florida. I will definity start calling around to find a dr. Thanks again
Posted 3/28/2016 10:36 PM (GMT 0)
This is a good site to help guide you with antibiotics:
www.treatlyme.net/treat-lyme-book/kills-lyme-germs-a-brief-antibiotic-guide

It may take you awhile to get in to LLMD. Maybe your primary could get you started. Make sure you take a good probiotic and put some detox measures in place.

Also, from personal experience, I believe I was infected 6 yrs ago when I developed a horrible summer flu with high fever and meningitis-like symptoms. The last five years have been filled with mild but weird symptoms. Things like tinnitus, rosacea, palpitations, itching at times, brain fog, etc. It was not until last year that I developed major neurological symptoms. So it appears that the immune system can keep it tamed down for awhile until suddenly it can't. Usually stressful events trigger the breakdown. That was the case for me.
Posted 3/28/2016 10:45 PM (GMT 0)
Thanks for that site information, k07...I haven't seen it before! Concise and informative...very helpful!
Posted 3/28/2016 11:59 PM (GMT 0)
That site is great. My pcp I believe is willing to help me. I plan to print that out and give that reference to anabiotic's to her to help her in deciding what course of meds to try. Thank you so much. I also googled what coinfections and will be asking her to order testing for babesiosis, ehrlichsiosis, and bartonellosis. I also wrote out a timeline of when I believe I was infected and symptoms.
Posted 3/29/2016 6:39 AM (GMT 0)
Yes a timeline is huge. Especially when you go to see an llmd. It helped me tremendously.
Posted 3/31/2016 4:37 PM (GMT 0)
Just a update...

I got a script of doxy. 200mg a day
I'm getting into another dr I know that will write me almost any script I ask for so I'm going to ask for clarityromycin to take with the doxy and grape fruit seed extract.

I'm ordering extracts to take

I'm doing Epsom salts and peroxide baths daily

And I'm working on putting together a healthy diet.

I watched that movie under our skin and I am not in agreement with that happening to my body. I have no one to help care for me or my 4 yr old so it's just not an option.

I'm working on getting some money together to go see a Lyme dr that I learned my cousin saw a few hrs from my home. The treatments are expensive but even a consult would help me. Only 250.00 for first visit. I would love to try the ozone treatments but I think they are out of my price range.

So that's about it. Wow I went from knowing nothing a few days ago to knowing quit a bit. But I've always said knowledge is power!

Thanks everyone for the support and help!
Posted 3/31/2016 4:47 PM (GMT 0)
That's great that you have started treatment...and also detoxing.

I need to mention that the 200 mg daily doxy is okay to begin with, but it should be increased to 200 mg twice daily. (total 400mg).

To make the epsom salt baths even more effective, you might want to add in dry brushing before the baths.


Are you drinking lots of water? And...add some fresh squeezed lemon in to some glasses (if you aren't already doing so)
Posted 3/31/2016 4:58 PM (GMT 0)
I forgot to buy the brush at the store today but had it on the list. I knew I needed more doxy but the dr said she was nervous to give me that dose. I was thinking to just take the 400 mg daily and run out faster then try to get a refill or more from a different dr. I'm lucky I have insurance so I could just go into different dr's and get meds. Since they are not narcotics I doubt anyone would notice I was getting multiple antiobiotics.

I bought a case of water and the powder packets u add for lemonaid but didn't think to buy fresh lemons. I will. I'm not a water drinker do I need to Spruse it up a bit.
Posted 3/31/2016 5:01 PM (GMT 0)
I'm not familiar with the powder packets for lemonade - do they contain sugar? If so, I wouldn't use them...just wait until you buy your lemons.
Posted 3/31/2016 11:32 PM (GMT 0)
Welcome. Glad you are getting treated :-) I'm new to lyme too

Post Edited (Lovedeeply) : 3/31/2016 5:37:02 PM (GMT-6)

Posted 4/1/2016 4:18 PM (GMT 0)
So I saw the ID dr at my pcp's request. She insists I have a false positive test. Is that possible?

She ordered a bunch of other lab work and I asked her to re test for the Lyme. She agreed but promises I will have a false positive again.

How can I have a false positive and still be reactive on bands as well? Is that right?
Posted 4/1/2016 5:04 PM (GMT 0)
First off Infectious Disease doctors don't even acknowledge lyme disease. I have not read of one ID that has diagnosed lyme disease for their patient. And a neurologist is just as bad. Personal experience here.

As a lyme sufferer there is no such thing as a false positive. That is like saying your are kind of pregnant. Nothing reacts positive on a lyme test but lyme. But, you may not want to argue with your doctor.

Also, please be aware that the testing for the co-infections is very unreliable by any lab.

I am of the opinion that you have a test in your hand that shows you have lyme. Now all you need is a lyme literate medical doctor and you might want to interview them for the job! Call their office and ask how many patients he/she has seen. What is the general protocol they use.

Your cousin's reference to a lyme doctor is great. Word of mouth by someone having been treated is huge.
Posted 4/1/2016 5:39 PM (GMT 0)
What is she basing the determination of the 'false positive' on?

Is it because you tested positive on IgM and since you've had the symptoms since June, he/she is saying you should be only showing positive on the IgG?

IgM vs IgG - means nothing as far as false positives.

From Dr. Jemsek's website:

"In virtually all infections, the IgM class of antibody (immunoglobulin) appears first and therefore represents a marker for an early infection. In most immune models, the IgM antibody gives way to the well-known IgG antibody class, usually regarded as the major enduring antibody response in chronic infectious diseases or other immune models. In almost all infection models, after just a few weeks, the IgM antibody level wanes to the point of being non-detectable and does not recur. However, a confounding fact in Bb infections is that the IgM antibody may persist for years, a very unusual situation in most disease states. Logically, one would have to conclude that this reflects an ongoing reactivation or persisting and continually renewing infectious state of Bb infection. Most active diagnostic laboratories involved with LD tend to agree with this notion."
Posted 4/1/2016 10:01 PM (GMT 0)
That's exactly it. I was not positive for both igg and IGM so it's a false positive.

She went on to say that Lyme is not prevalent in Florida and since I've not lived in places like Conneticit than I must not have Lyme or any coinfections. She refused to even entertain the thought that I could have coinfections.

She even said there are only 300 real cases of Lyme in last 10 years. Only 10 per year so it's very rare. (I call totally bullcrap).

So I was re rested today for Lyme.

Now she says since Lyme and syphlis are so close that I might have syliphilis. (I know I don't and have been tested for all STds last May when symptoms started).

But hey to please her I agreed to all std testing along with RA and Lupas.

On another positive note I called my other dr and asked for a script of Clarithromycin 500 mg 2 times a day with a refil and I'm doubling the Doxy to 200 mg twice a day.

So I'm treating myself. And when I can afford it I will go see the Lyme dr in Clearwater. I guess I'm lucky that I have a pain dr that will write me what I ask for. So that's where we are at.

Thanks.
Posted 4/2/2016 12:33 AM (GMT 0)
Wow! I don't know if I have seen any test result that both IgM and IgG were positive.

"She went on to say that Lyme is not prevalent in Florida and since I've not lived in places like Conneticit than I must not have Lyme or any confections."
So, this is a Dr....presumably an intelligent person. But, only thinks Lyme disease exists in Connecticut. Common sense would tell her that the ticks can hitch a ride and be everywhere.
Has she been living under a rock?

So, she'd rather test you for syphillis....

I don't know how you stay calm dealing with that &%$^@.

okay - rant over.

I am glad you were able to get more antibiotics...but will you be able to keep getting them until you see a LLMD?
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