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Posted 6/11/2016 12:17 AM (GMT 0)
I'm feeling so frustrated. I had the Igenex test and it can back Igenex positive but CDC negative for lyme: I didn't have any co infection testing... Wish I had!

I had band 41,31 and 83/93 positive. My c4a was 10,000!

I am on week 3 of antibiotics (doxy, ceftin and tinizadole) pulsing and am not feeling any better or worse. My symptoms change everyday, but they did that before abx.

I have tremors, twitching, muscle aches, back aches and all Over shaky feeling. Insomnia comes and goes, pinching pains come and go. Muscles feel weak but i can still do everything I did before.

I have seen a neuro and he ran every test he could think of and came up with nothing. Just a positive lyme screen and negative quest western blot.

I expected to either feel better or worse on abx. I feel neither: I'm questioning my diagnosis... And I'm sad and scared.

What do you experts think?
Posted 6/11/2016 12:22 AM (GMT 0)
every thing you are experiencing we've all been there. you are not alone. It's weird and confusing.....at first. But the more you learn about lyme and co and understand it the less weird, confusing, or even alarming it becomes.

But to your question, the fact you are Igenex positive with lyme specific bands plus your symptoms, you have lyme. The diagnoses is not wrong.
Posted 6/11/2016 12:27 AM (GMT 0)
Also, the fact you are not feeling worse is a good thing (who wants to feel worse). And you are not feeling better because any lyme treatment takes longer than 3 weeks.

Unfortunately, we can almost all promise you, that you will feel worse at some point. It's not a matter of "if" but "when". However, when you do, it's a "good" thing because that is a "die off" or a more positive term "healing crisis".

It took me a couple of months to feel significantly better (though not completely better), but you have to give it longer than 3 weeks.

I'm in MUCH better shape then a lot of fellow lymies but I know I'm not completely well. I've only treated a total of 2.5-3 months.

Prepare your mind that this is marathon and not a sprint. Something I had to learn as well.

Post Edited (dacarte3) : 6/10/2016 6:56:47 PM (GMT-6)

Posted 6/11/2016 12:31 AM (GMT 0)
With those symptoms and a positive test...you have Lyme.

Three weeks is not enough time to gauge if the treatment is working...or not.

So, you haven't herxed yet?

Hang in there...give it more time.
Posted 6/11/2016 12:49 AM (GMT 0)
Welcome to the forum. I am glad you found it. I have only known I had lyme for sure since March. Same diagnoses as you. I know it is confusing, kind of bitter sweet. It is good to have a diagnoses and scary to know it is Lyme.

You will be doing a lot of research over the next few months trying to find out where to go to from here. This is a good place to start. No one here has all the answers but there is almost always someone who is experiencing what you are. Someone who can relate so you don't feel so alone. There are also a lot of avenues to take for healing. You will find a lot of advice here for that also.

You can read the "New to Lyme" at the top of the page. It has a lot of information that is important to know.

Rather than the neurologist, unless he is lyme literate, you will want to seek out a LLMD (Lyme Literate Medical Doctor) that can help you through this journey. It can take months to get into one so I would suggest for you to start right away.

I am sorry for your diagnoses.
Posted 6/11/2016 1:46 AM (GMT 0)

Girlie said...
With those symptoms and a positive test...you have Lyme.

Three weeks is not enough time to gauge if the treatment is working...or not.

So, you haven't herxed yet?

Hang in there...give it more time.

I recently read an article that basically stated that the "goal" is not to herx, but to manage your treatment so that you are healing, not herxing. It also stated that too much emphasis is placed on herxing and that Lyme patients should not treat to the point where they want or need to herx, in order to gauge or prove that their healing protocol is efficient or progressing.

It was a very interesting article that I need to find again to provide a link.
Posted 6/11/2016 1:48 AM (GMT 0)
Welcome - sorry you're here but you're in a very good place.

Just wanted to reiterate agreement with all the input so far - good posts. The sooner you find an LLMD partner, the sooner you can start more effective treatment. The sooner you can get into Lyme self-education, the sooner you can answer some of your questions and get prepared for treatment and working with an LLMD. And there is quite a bit of the treatment protocol that you can start right now including diet, detoxing and documenting your health history and symptoms. There is more info about that in the intro thread.

-p
Posted 6/11/2016 2:01 AM (GMT 0)

Krimpet said...

Girlie said...
With those symptoms and a positive test...you have Lyme.

Three weeks is not enough time to gauge if the treatment is working...or not.

So, you haven't herxed yet?

Hang in there...give it more time.

I recently read an article that basically stated that the "goal" is not to herx, but to manage your treatment so that you are healing, not herxing. It also stated that too much emphasis is placed on herxing and that Lyme patients should not treat to the point where they want or need to herx, in order to gauge or prove that their healing protocol is efficient or progressing.

It was a very interesting article that I need to find again to provide a link.

I agree with that.
Posted 6/11/2016 2:06 AM (GMT 0)

Krimpet said...

Girlie said...
With those symptoms and a positive test...you have Lyme.

Three weeks is not enough time to gauge if the treatment is working...or not.

So, you haven't herxed yet?

Hang in there...give it more time.

I recently read an article that basically stated that the "goal" is not to herx, but to manage your treatment so that you are healing, not herxing. It also stated that too much emphasis is placed on herxing and that Lyme patients should not treat to the point where they want or need to herx, in order to gauge or prove that their healing protocol is efficient or progressing.

It was a very interesting article that I need to find again to provide a link.

Saying hang in there...give it more time...I meant for any response...not necessarily a herx...but was saying three weeks really isn't very long.
And, I totally agree that the goal is not to herx (although, I have wished for one - particularly when I took Artemisinin - as I wanted confirmation that I had Babesia) - the goal is to try and detox enough so that we keep the toxin load down.....but...in reality...most of us find ourselves herxing at some point during treatment.

But, it is possible that some people don't experience a herx.
Posted 6/11/2016 2:07 AM (GMT 0)
i was diagnosed with Lyme and Bartonella then was tested again through mainstream medical and told no you don't have Lyme's. I stopped treating with herbs thinking maybe they were right. Wrong!! i will say it again they are wrong!! I went down hill quickly-now back on herbs doing much better. Slow process, and patience helps. Hopefully you will be feeling better soon. This forum has been a tremendous help-actually more than anything else including my doctors. God Bless
Posted 6/11/2016 2:45 AM (GMT 0)
Some how I manage to not herx. I think because I detox a lot.

My first experience with lyme was with antibiotics and for 6 weeks I felt nothing - not better, not worse.

So hang in there.
Posted 6/11/2016 3:13 AM (GMT 0)
remember you are in charge not your doc.
recovering from any chronic issues take time and usually several if not many actions. try to learn as much as you can and find a doc that helps and you feel comfortable with.
detox
kills bugs
strengthen you immune system
best of luck
Posted 6/11/2016 3:19 AM (GMT 0)
Thank you all for your kind and encouraging words. I don't think I have herxed but I do detox a ton. On second thought...I have had some symptoms come back that have been gone for a few months. Is that considered a herx?
Posted 6/11/2016 3:34 AM (GMT 0)
Yes that can be a herx.

Here, check this out.

www.tiredoflyme.com/the-herxheimer-reaction.html
Posted 6/11/2016 3:38 AM (GMT 0)
I was there 1 month ago.... welcome to our club. Yes you have Lyme with treatment will be cured don't worry.
(I wish i could have condensed milk with vanilla ice cream right now.... )

Post Edited (robby vieira) : 6/10/2016 9:43:52 PM (GMT-6)

Posted 6/11/2016 3:55 AM (GMT 0)
Hi New to Lyme, I just wanted to add my 2ยข to all the comments here, folks have offered you some good advice.

I would emphasize that treatment can take awhile, and the need for patience is needed to avoid unneeded stress. When you are feeling frustrated or impatient, just come here and rant, we all understand!!

There is a ton of information out there on Lyme, so you can do as much or as little research that you want. Just be careful because some of the info is from the CDC and IDSA which will not jive with the information from LLMDs, most credible research, most Lyme sufferers, and ILADS. If you aren't familiar with the politically and financially driven split between the CDC/IDSA and ILADS, you may want to research that. I'm too tired to try and explain it!

Best wishes to you and may God bless and help you as you start/continue your healing journey.

Trisha
Posted 6/11/2016 4:29 AM (GMT 0)
To Robby Veira's point, and not to be an alarmist, but hopefully a realist, last I checked evidence of a cure for Lyme has not been substantiated. It took me a long time to come to terms with this and in doing so has helped me rationalize the marathon vs. sprint analogy, and to really accept patience because this disease sucks. It takes a lot of work and time to get better to get better. I'm nowhere near that but I just have to remind myself remission is the goal.
Posted 6/11/2016 4:59 AM (GMT 0)
Sounds like you're in the same boat I'm in, only I haven't tested positive for lyme yet as my doctor ordered an Elisa test at a crappy local lab and it came back negative so of course, he's thoroughly convinced that I dont have lyme now even though I told him my symptoms and skin rashes matched lyme criteria to a T and that a negative Elisa doesn't mean anything.

You're lucky your doctor already has you on antibiotics even without an official lyme diagnosis, it seems I'm still struggling to get mine to recognize that late stage lyme and coinfections really exist lol.

And just out of curiosity, what kind of tremors/muscle twitching are you having? I have these weird, barely noticeable vibration like tremors in my fingers on both hands any time my hands aren't rested. I also get the classic lyme muscle spasms in random parts of my body that seem to be in Morse code like patterns lol. Not the worst of my symptoms but they sure do get annoying.

Anyway, just like others had mentioned, with those symptoms and a positive test, you almost certainly have lyme but once you find the right meds, diet and detox methods, you'll definitely start to feel better. :)
Posted 6/11/2016 5:15 AM (GMT 0)
Has everyone tried the B12 dibenzicode gets rid of my shaking and twitching. I am convinced Lymes/bartonella deplete loads of vitamins/minerals. Maybe even make us less able to absorb. That form really helped me with some scary neurological issues-methylcobalamin sublingual form I could not absorb but I didn't know it wasn't working for a while until I inadvertently got this other form b12 and voila worked like magic for anxiety, twitching-you know all the b12 symptoms- anyway just a thought (I also have to use potassium chloride with B12)
Posted 6/11/2016 1:56 PM (GMT 0)

Bat03 said...
last I checked evidence of a cure for Lyme has not been substantiated.

Robby V probably should have elaborated.

Yes there's no magical shot you can take and then the next day you're fine. There's no "cure" in that sense. But that's actually not the definition of "cure".

Definition of "cure": "relieve (a person or animal) of the symptoms of a disease or condition"

Symptom free is definitely possible. But it's a marathon, not a sprint.
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