Confused about lyme diagnoises

Hi everyone,

I am new to this forum. My name is Jessica, I am 26 and I have a couple questions about my newly diagnosed (2 days ago) lyme disease.

For the past 5 and half years I have had unexplained symptoms of mostly severe fatigue, off balance feeling, lightheaded sometimes faint feeling. I experience off balance 24 7 with varying degrees. Recently (past year) ive had tingling up my spine sometimes, tingling in my fingers, toes sometimes leg. Poor circulation in my fingers. Over the past 5 years ive had 1 cat scan, 3 mris, ecg, 24 hour Holter heart holter monitor (I did holter monitor a month ago) and SO much blood work, have seen an ENT, hearing tests and next week Im scheduled for a balance test from my ENT to rule in or out ear problems, or other problems causing my off balance feeling (like walking on a boat). All my test have come back normal except last MRI showed non-specific white matter at the front of my brain.

I recently came across learning about lyme disease and went to my doctor last week to be tested as this being what has caused my symptoms over the last 5 years.

I got my results 2 days ago.

My Lyme IgG-IgM EIA (ELISA) was Reactive
My Lyme IgG Western Blot was Non- Reactive
My Lyme IgM Western Blot was Reactive

Then the report says at the end : Borrelia burgdorferi (Lyme disease) interpretation : The results should be interpreted in the context of the clinical signs and symptoms.

My doctor has started my on antibiotics for Lyme disease which is Teva-Doxycycline 100MG twice daily for 21 days. She has referred me to an Infectious disease doctor.

Im confused about the results however as I tested Non Reactive for the Western Blot IgG and from what I read is if I have been sick-having symptoms for 30 + days (my case is 5 and a half years) the IgG western blot should be reactive if my symptoms are from lyme. The IgM indicates NEW infection or false positive if the IgG is negative. And the IgM was only Reactive. I have been having my symptoms for 5 and a half years.

What do you think?

I appreciate all your responses! Thank you!

Post Edited (JessicaMommy) : 6/4/2015 6:14:03 PM (GMT-6)

Thanks sarahm620 for the reply. It is great to have answer finally as to why I have these symptoms but I am scared. For some reason my doctor still wants me to do my balance test next week (2 hour drive from home) to rule everything out. I think it is a complete waste of time though now that I have a positive Lyme test.

I am also scared because I live in Canada. Ive read so much about how bad treatment is here and the help you get. I have children and I am worried about the future. Im sick to my stomach. Im also worried about the herxing I have read on the internet and my doctor told me nothing about this. I started my medicine last night so have taken two pills so far. Am I guaranteed to have herxing or is this something that might happen.

Do I have ANY chance of this 3 week course of antibiotics helping me - at all. I really hope so.

Sorry my questions marks are not working on my laptop right now so that is why im using periods.

Post Edited (JessicaMommy) : 6/4/2015 5:25:19 PM (GMT-6)

Hi JessicaMommy & Welcome,

I don't know if you will herx or not... hopefully someone else will come and be able to answer your questions better.
I don't trust my mind right now as it is more foggy than i realize sometimes.
But... just know that there are people here that will be able to help you understand things... and do not be afraid to ask any and all questions.
Sometimes it takes a bit of time for the answer to come... but when it does... it will help you to feel a bit of empowerment over this thing.
You can also go to youtube and look for Dr Jernigan or Dr Buhner< i think thats the spelling.... for me it has helped to watch videos when my brain won't retain things.

This disease can be so individualized the way it manifests in your system... and yet there are commonalities... its just the degree to which it hits.

I just joined last month and this forum has helped me so very much... people really do care... you are not alone in this.

Try to replace the fear with knowledge... so you can feel more empowered... and less stressed... This disease likes stress... don't let it have that ... whatever you can do to relax... please do.

Hi Jessica,
Welcome to our community! I"m so glad you found us!

LOL! Most of our bodies didn't get that memo!!! This is a very individualized set of infections, not everyone has the same symptoms, the same symptom severity or even will have the same treatment work! Those "in the know" are fighting the CDC and their false information, but it will take a long time, so until that time comes, we have to rely on groups like this one to help us through and find what works for us.

Do continue to take the abx that your doc prescribed, but when that's gone, you will likely need to transition to an herbal protocol, or switch over to a Lyme Literate Naturopathic doctor- there are a few in Canada that treat Lyme. You can email me or one of the other members from Canada to get that information.

And to avoid as much stress as you can -stay away from ID docs!! They don't believe in chronic Lyme and won't continue to treat you past 30 days. This is a political fight, and we are caught in the middle of it.

As Greg said, if you let us know what bands were reactive, we can help you understand them - but you do have Lyme disease.

I'm continuing with the antibiotics and praying it is all I need to help me.

I had two pregnancies during the time I've been feeling sick, could I have passed this onto them during pregnancy?

Let's take your questions one at a time:
1) "I don't know why but it is hard for me to 100% believe I have Lymes. Basically because of the following reasons : 1: My Western Blot for the ImG was only "Weakly Reactive" and then my Western Blot for the IgG was non reactive. Does that not give me a chance I do not actually have Lyme Disease? Especially because I've been feeling sick for 5 1/2 years now wouldn't I have had a better reaction instead of weakly reactive and non reactive?"

No, not with these infections. They inhibit the immune system, so the longer you go without treatment, the less likely you will test positive for an antibody test - which is all we have right now. I couldn't test positive until I had a full year of strong abx - and I was untreated for at least 40 years.

2: Ive had a lot of problems with my ear and I know it controls much of your balance. I even had a loud heart beat in my ear for 3 months last year. I was so hopeful for this balance test im doing next week (ive been waiting 7 months for an appointment) that it was going to show an ear problem causing my troubles.

Even if you do have an ear problem, it still doesn't rule out Lyme. You had a positive ELISA- only 30% of those with Lyme will even test positive on an ELISA - it misses the other 70% as it's not that sensitive, but it is very accurate once it shows positive.

3: My doctor has been specious about MS ( I know lyme mimics MS ) and the balance test (ENG) can help prove that if I did indeed have MS.

Actually, that's not true. Many people with Lyme have those balance issues since Lyme can be very much neurological. I did - and I was yelled at by one doc that if I didn't start MS treatments that very day I would die. I didn't listen to him and went on to find a doctor that treated me for Lyme and I'm alive, healed and doing quite well - and without balance issues any more!!!

4: I have no joint problems really, or arthritis ... my main and almost only issue is balance, lightheaded, faint at times feeling and super tired. I didn't think Lymes could only manifest in this way?

Lyme manifests in many, many different ways. It's insidious and will eventually affect every aspect of your body and being. It also has preferences for weak points in the body, so if your joints aren't a weak point in your body, then it wont' attack them first - but have no doubt, that left untreated it will get around to it! I have been infected twice now, so I have had quite a few experiences with these infections - but you will see as others chime in that I am far from the only one with these experiences from Lyme.

These tests are good - you do need to know that it's not an issue with your ears, but that Lyme is causing the balance issue - just don't be surprised that it clears up if you are sure to get proper treatments.

And, you're very welcome - that's why we are here!! You won't know if you don't ask questions!!

Traveler I sent you an email.


I'm so afraid something bad is going to happen to me and I worry about my kids. I've always been a big worrier but this is just too much for me. :( I'm afraid this is going to kill me or put me in horrible pain. My symptoms have stayed the same thus far without really changing, and now im on antibiotics and praying im a lucky enough to feel better from this short course. But pretty doubtful obviously.

Hi JessicaMommy,

I'm so sorry you're going through this. It is hard. I'm happy that you found the forum. Way to go!

I have had Lyme and co-infections for a number of years. about a year ago, my Lyme exploded. That is what triggered me to find out what was wrong. I finally got tested through Quest for Lyme. I showed Lyme antibodies, but my Western Blot was negative through Quest. All my other tests were normal. I kept digging. Lyme and co seemed like the logical conclusion.

I found an LLMD and got tested through IGENEX. I tested positive with IGENEX on my IGM. My IGG was negative even though I have had Lyme and Co for years. Lyme and co-infections really suppress your immune system so that it is hard to produce the antibodies to show on tests. The distinction between IGG and IGM is not important with Lyme. The fact that you have antibodies and symptoms is important.

I have had dizziness and lightheadedness. I also have felt like I'm walking on a boat. I have extreme fatigue and fear with anxiety. Babesia can cause severe fatigue, anxiety and fear. I have Lyme, Babesia and Bartonella.

You should see a Lyme Literate doc who can diagnose you. If you have co-infections, such as Babesia or Bartonella, doxycycline won't adequately treat them alone. If you have had Lyme for a while, you will need more than a few weeks of treatment. Lyme and co-infections are complicated.

I urge you to see a Lyme Literate doctor who can help figure this out and get you treatment. Hang in there! I'm sorry you are going through this, but you're on the path to figuring it out.

JessicaMommy,

First, have you heard of the 5 stages of Grief. The first is denial. Denial that you are sick. Denial that you feel like bit by bit you are losing who you are and where you are headed.

I'm not trying to be grim. There is one sure thing you can count on and that is that if you don't treat the Lyme you WILL get worse. At first it seems like little things and it's no big deal, but at some time it becomes a losing battle. A losing battle in the sense that you lose your self to the disease.

Your test results are a gift. The gift is that test results give something to fight and it's a fight that can be won. Scan through the Forum posts and you will see many, many people hoping for a positive result. It seems backwards but most people in the forum have spent many years and many dollars looking for an answer. Frequently, the answer is the name of a collection of symptoms. No test and no real treatment. I'm one of those people. My diagnosis is Fibromyalgia and my treatment is a hodge podge of medications that allow me to function most of the time. So the best thing you can do is to is take the test results and acknowledge that you do have Lyme.

I had a friend who said the first thing you have to do is give yourself permission to be sick. Until you give yourself that permission you body will not only be fighting the Lyme but also fighting your brain.

My babies are 22 yrs and 15 yrs. I was unable to participate in many of the growing up activities. My son (15) only knows me as a sick person who at times fails him as a parent. After 35+ years (probably), I don't even remember what it feels like to be normal.

You are very young (half my age) so the Lyme has not had as much time to invade every cell in your body. Less time, less Lyme, quicker recovery.

You know how the safety briefing they give when on an airplane they say that if the oxygen masks drop to put your own mask and then help others. You need to take care of you, then when you are better you can help your babies. We work so hard these days to be a great mom, good employee, etc. that we neglect our own selves. Life is better for everyone if mom puts herself first sometimes.
I am going to have my blood drawn Tuesday, but like you I was concerned about my kids. I asked those questions too. As parents we naturally wonder about our kids. We always want better for them than we have ourselves. My son had symptoms at a young age. We had testing done for everything under the sun. Both my kids had chronic ear infections and chronic strep so they had been on long term antibiotics. My daughter never had any symptoms. In the last 3 years, my son has been on growth hormone because his body did not produce it. He grew from 0% on the height chart to 50%. All symptoms are gone. I'm keeping my fingers crossed that his rapid growth strengthened his immune system enough that he was able to fight on his own.

Have you ever seen the cartoon of the 5 blind men and the Elephant. They each use their hands to feel around and then they say what they think it is. Each man is only able to feel part of the Elephant and because of that every guess is different (feeling the trunk comes up with a completely different guess that the man feeling only the tail). It's the same with doctors. If you see a rheumatologist, the doctor tries to fit the symptoms into autoimmune diseases. If you see a neurologist, the doctor tries to fit the symptoms into something like MS. Psychiatrist diagnosis of depression. It can go on forever.

You have a positive Lyme test. If you find a good doctor, they will be able to work with you to find the best treatment.

I find it very interesting that many people here have been successful with herbal treatment. I had determined that before some one introduced me to this forum. The diagnosis and treatment for Lyme is so controversial that there are few doctors who are willing to risk their license to treat with abx. People have been using herbal medicines for thousands of years. It's only in the last 100 years or so that the west has become dependent on Big Pharma. There are posts on this forum about which vendors are reliable as a supply for herbal protocols.

Thank you for mentioning the pulse in your ears. I always thought every on heard that same heartbeat. It was just a few months ago when I found out that my husband has never heard a heartbeat through his ear. So now I know its one more symptom in a long list that fits many diagnoses.

Good Luck, Kim
Sorry these posts some how got added in the wrong order.

I do not think the balance test is a waste of time because I tested positive for Bartonella (a co-infection of Lyme) and my balance test was still abnormal. This doesn't mean the off balance and motion sickness feeling isn't from the Lyme/Bartonella. My doctor is almost positive it IS caused by that, however, it does mean that they might be able to help me before I get the Lyme/Bartonella taken care of. My doctor is sending me for specialized physical therapy to retrain my vestibular system (I had left vestibular weakness). My doctor ENT is unaware of the Lyme/Bartonella diagnosis, but my physical therapist knows and he is very understanding. Hope this helps. Good luck.

"If this sounds complex, that’s because it is." Yep, so complex that the science does NOT back up their claims of the Igm being able to produce false positives like they say.

Lyme, particularly when combined with Bartonella, suppresses the immune system, therefore it suppresses the immune reaction - so false positives are very, very rare when you look at the Lyme specific bands.

The ELISA is a very poor test for diagnosing Lyme disease as it misses 70% of those that get tested yet actually have a Lyme infection (30% accuracy).

The Western Blot is slightly better, but still misses 50% of those that are tested that actually have a Lyme infection.

The reason why we say these things?:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/


archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/