Lyme Disease Community
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Avatar universal

Feel Worse with Antibiotics and Dougting my Diagnosis?

Hi everyone I'm sorry to be posting so much I'm just having such a hard time with all of this and feel really lost and confused. I don't know what to do or who to trust.

Believe me I'm so tired of seeing doctors and I'm so tired of spending so much of my time researching diseases. Back in September when I received my positive IGeneX test I cried because I was so relived that I found something to explain why I don't feel good. Something real, on paper, that says I have something that needs to be treated and with that a glimmer of hope that I found the right path to feeling good again.

But I don't feel convinced that I have Lyme disease. I feel like I'm spending so much of my time, effort, and strength while getting nowhere. As I see more doctors, do more research, and get more negative tests I can't help but question am I even sick with Lyme disease? The only people who believe I have Lyme disease are the sketchy doctors I've seen and a private Lyme Lab called IGeneX which I know nothing about and releases none of its test practices.

To complicate things even more almost all of the IGG and IGM bands on my test results from IGeneX can be cross-reactive for other diseases. What am I to do? I've started antibiotics 100mg doxy twice a day and I feel worse. It doesn't seem to be helping me at all and I've been taking it for six days. Why is that?

I wouldn't doubt I have Lyme or a co-infection if I was real sick, if I had horrible aching joints, tremors, facial paralysis, and all of the other nasty things you can get with Lyme. But these are the only symptoms I have:

- Mental cloudiness (I feel impaired and slow like I've been drinking).
- Lately an increasing feeling of dizziness and constant unsteadiness like I'm walking on a rocking boat or drunk.
- Fatigue but still able to function at a low level.
- Possible fever 99.5+ however its possible this could be normal variation.
- Minor muscle twitching.

That doesn't sound too much like Lyme or a co-infection to me and I'm not so sick I have to be in bed all day I'm just miserable like I have a moderate flu all the time. I really don't know who to trust and I just was hoping someone on here might be able to reassure me that I'm on the right path.

I've also attached my IGeneX test results as an image if anyone wants to take a look at them and explain why this might be a somewhat definitive test result?

Anyway thank you for reading this, I'm just so tired of it all. I just want to feel better again. I can imagine myself wasting my whole young adult life going from doctor to doctor, getting tests done, and sitting in front of a computer screen late at night writing posts like this. I don't want that to happen. I just wish I could feel certain I'm doing the right thing to feel better again. I just wish there wasn't so much uncertainty.
19 Responses
Avatar universal
Okay, I just learned the hard way that toggling back and forth between a message like this one and the test results you attached will cause complete loss of the message in process.  Sigh.  

So this will have to go in bits and pieces in a series of messages, since i can't remember everything in the tests in one go.  More to come in next message.
Avatar universal
Sorry, I'm too tired to do this tonight.  More tomorrow.  

But bottom line is:  your tests indicate positive for Lyme, in my amateur view, and your symptoms are consistent with Lyme.  .
Avatar universal
Thank you :) and that's ok!! I know I learned that the hard way too haha.
4939681 tn?1361302899
See post "lymph node update"!  I am in the exact same boat.  All of the symptoms that you listed above after starting doxy, I have them!  I am on week 3 of doxy and my symptoms haven't lessened in the least (just getting worse and worse).  That being said, when my doctor called with my surgery date I asked him about pain meds and told him how much worse I've gotten since being on doxy.  He said definitely to not stop taking it, that it means I am most certainly fighting some sort of infection.  Btw, he doesn't even believe that I have Lyme, yet told me to keep going with the doxy.  I did test positive for a Lyme specific band on CDC western blot, but just #23.  The uncertainty of all of this is agonizing.  You are not alone.
4939681 tn?1361302899
Please note that my comment was not to say that since my symptoms are similar you should have similar worries.  I was just trying to relay that you are not alone, that I too feel worse and my doctor swears that that is indeed a good sign that the doxy is working and to keep at it.
Sorry, felt the need to clarify after referring you to my post that it might be some sort of insinuation that you should fear the same.  Not at all!  Half of me knows my fear is irrational... while ALL of me is desperately grasping at any lead to feel better.
We're gonna make it through this!
1423392 tn?1286593990
Most of the symptoms you are having are the same symptoms I was having ( mine is mostly neurological )

I didn't have the aching joints ... Etc

Mental cloudiness (I feel impaired and slow like I've been drinking).
- Lately an increasing feeling of dizziness and constant unsteadiness like I'm walking on a rocking boat or drunk.
- Fatigue but still able to function at a low level.
- Minor muscle twitching.

I couldn't walk a straight line to safe my life extremely off balance but the times I could walk a straight line I felt like I was on a boat!

I have been antibiotic treatment for about year and half but at the start of treatment it was a rough go ... All my symptoms went on complete over drive ( no balance , tremors , fatigue . Felt like had the flu , etc)

But slowly it  got and has gotten better I still have bad days but they are shorter and less frequent ... I'm not expert but want to tell you to hang in there it will get better!
Avatar universal
Here's my short, amateur take on the test results:

while 'equivocal' is not a positive test, it is also not a negative test.  A not-negative still has meaning.  Not definitive, but has to be read in context with other results below.
IgeneX IGM:  

this looks for the immune response to a fairly recent infection, so if you've been sick a while (admittedly a vague concept of how long 'a while' is), a response on this test will have declined.  Also note that even an "IND" [indeterminate] response means something:  if it were nothing, there would a zero indication.  

These are the bands on which you have responses, and what they mean according to a website called truthaboutlymedisease:

     23-25 --- OspC (outer surface protein C), specific to Lyme (meaning no other infection would cause a positive result here
     31 --- Osp A, ditto
     41 --- flagellin (whip-like tail) of all spirochetes, so maybe Lyme, maybe not
     58 --- unknown, but may be Lyme
     83-93 --- specific antigen for Lyme bacteria, probably a cytoplasmic membrane

This arises after the early acute phase of the infection, when IgM antibodies are declining.  Think of it as the army of occupation instead of the IgM invasion force above.

     41 -- same as above
     58 -- same as above
     93-93 -- same as above

In the IgG and IgM results, the more + signs, the stronger the reaction.

Note on the IgG and IgM results there is a conclusion, based on how IGeneX reads the test vs how the CDC reads the test.  On both of your tests, you have a positive from IGeneX and a negative on the CDC standard.

You say above:  "The only people who believe I have Lyme disease are the sketchy doctors I've seen and a private Lyme Lab called IGeneX which I know nothing about and releases none of its test practices."  

Have you read the IGeneX website?  Why do you trust others like LabCorp?  Do you know any more about LabCorp than you do about IGeneX?  

NonLLMDs and Lyme deniers generally don't like IGeneX because they turn out positive test results where so-called mainstream labs don't.  But why the Lyme-deniers believe IGeneX is not to be believed beats me.  I have never seen a detailed critique of IGeneX except vague statements that they turn out too many positive results to fit with the IDSA/CDC pronouncement that Lyme is rare, so IGeneX must be wrong:  When you don't like the message, attack the messenger.  Sadly, that works.

I would suggest you go to the IGeneX website and review their certifications and their explanations of what they do.  If IGeneX were a ripoff lab, they would not still be operating, considering the IDSA types would have IGeneX shut down in a heartbeat if they had the proof.

And one final note:  The CDC standards were developed years ago strictly for surveillance purposes, so the requirements to count an illness as definitely Lyme were set very high to avoid counting things that might be Lyme but aren't -- to keep the data pure.  Epidemiological surveillance standards should not be used for diagnosis, but in the case of Lyme, that is exactly what has happened, thus missing significant numbers of truly infected people.

And ... one final, final note:  Lyme is supposed to be a clinical diagnosis, that is, based on symptoms, aided by test results -- but NOT solely on test results.  The IDSA/CDC docs say the faulty tests nonIgenex tests are the last word, but they are not for all kinds of reasons I don't have time to go into.

An LLMD using IGeneX tests diagnosed and treated me, so I'm a fan.  Your results may differ.  :)  Good luck!
1763947 tn?1334058919
The most important thing to remember is the herxheimer reaction (herx) which means you feel worse before you feel better. You are having a die off of the bugs which is toxic to your body which is what we all really want.

If you have a doc you trust you could call him for ideas to lessen the herx reaction. I take activated charcoal per my llmdwhich reduces those bad feelings.

Most of us were tested through igeneX and an LLMD. Your symptoms sound like Lyme and the fact that you are herxing confirms it.

I was lucky enough to have a nurse friend with Lyme in another state and I told her I felt so much worse. She told me that is good, that is how you want to feel, it means the doxy is working. I went from being unable to walk or open a cabinet to walking with a cane and now after a year no cane.

You are on the right path. Your symptoms are that of Lyme and it will get better. Try to hang in there.
Avatar universal
For what it's worth, I was on doxy for almost a month and I felt absolutely totally awful. I decided that I would prefer to have no meds at all and just live with lyme instead, if doxy did that to me.
I switched to minocycline a week ago and I feel a lot better, I can at last feel I am starting to make improvements now.

It's very scary when you only get your lyme diagnosis from shady doctors and you don't knwo if you can trust them.
Have you emailed ILADS for a registered ILADS member doctor near you? You are far more likely to get a trustworthy and convincing doctor that way.
Avatar universal
I believe the referral request for an LLMD name from ILADS is at:

contact  [at]  ILADS  [dot]  org
Avatar universal
Thank you for your reply :).

I'm sorry to hear you're feeling worse, I know its really frustrating. But thank you for the info its at least encouraging and comforting to know I'm not the only one experiencing this and that a doctor finds it encouraging too!

Stay strong and I hope you start feeling better soon :D!
Avatar universal
Thank you and thank you all for your words of encouragement and information :). You don't know how grateful I am to have you guys to confide in and talk to. It means a lot and its very comforting!

I'll for sure stick it out and continue taking 100mg of Doxy oral twice a day. I assume this is sufficient but still haven't gotten a true LLMD. Apparently the doctor I was seeing that was the closest to an LLMD is "quitting" so I no longer have a doctor, figures right? Just my luck.

I've decided to contact ILADS like you guys suggested. I send an email to contact [at] ILADS [dot] org asking about a referral for an LLMD in my area so hopefully that will find me a doctor before the first step of my treatment is completed and I can smoothly transition in with another doctor.

I have a few more questions if you guys don't mind? I'm aware that there's something called "herxing" when you start treatment and from what I understand that just means you feel worse, sometimes a lot worse, when starting or changing treatment before you feel better? I was wondering how long does this typically last and at what point may I suspect my treatment isn't going as planned? When might I expect to start seeing improvement?

Anyway thank you all so much for your overwhelming support and great information. It means a lot :D!
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