HI! Freaking out here!

Hello, I have had symptoms, sickness, numbness, weakness for 4 years. I am 30. Finally today I got test results back showing positive for Lyme, with bands 41, 23, 41 and 66. Does this mean Lyme Disease? how do I know if its Chronic? I have really itchy skin, super tired and wiped out, have lost a lot of weight...almost 30 pounds. I am 5'7" and like 125 right now. I have been tested for quite a few things the last few years to try to figure this out. I also have joint pain and severe night sweats. I am a very healthy eater, active when im not totally wiped out, do not drink alcohol bc I get really bad neuropathy the day after. SHEESH. I sound like a mess, but i really am freaking out a little...not sure why. Probably because I don't know much about this. I have to see an infection disease doctor and rheumatologist next week. Starting 28 days of antibiotics today. Does this sound like Lyme Disease?

lpaiges23 - Welcome to the forum. There will be a moderator reply shortly. If you've not already, read the "New to Lyme" thread. There's lots of information in there. I'm new to all this too, so not able to answer questions, I can just let you know you are not alone. You will find so much help and comfort on this forum.

Hi lpaiges23 -

Just wanted to welcome you - sounds like you've had a rough 4 years - very familiar journey. But you're in the right place - this is an invaluable resource with a lot of good support.

I agree w/ Girlie - those are positive results for Lyme. I'm sorry but it's so good to know what it is. I also agree that the ID and rheumy will likely not be helpful, not recognize the limitations of the tests or your sx and actually declare that you don't have Lyme. You could be lucky but we see this over and over.

Please let us know i fyou have any questions - we're here to help.

-p

i already feel better hearing from you all. I have felt crazy over and over again, with weird symptoms showing up randomly. Some days great, some days bad...some days my joints ache so severly, yet some days i am ok. What a weird thing.

She has me just on Doxycycline for 28 days, twice a day...which I am dreading because i am so sensitive to antibiotics and yeast infections and tummy aches. BLAH. I do feel a sense of relief...i constantly am apologizing for feeling nauseaus, dizzy, not having energy, being in pain, skin infections...I feel bad complaining and almost embarassed that each Dr's visit lead to nothing, like i was crazy. We are not crazy!! i am happy to have found this forum, blessed in fact. So...what do we do? How do we feel better?

Just wanted to welcome you to the forum.

My symptoms have changed (as mainly seen with these infections). My symptoms come and go, except for the adrenal fatigue. Fatigue, anxiety, depression, shortness of breath, dizziness, headaches, muscle aches/pains, increased pms symptoms, etc.

It's really been up and down with me lately.

So incredible to have such a network of support. I was surprised that anything even came up in my blood tests, after feeling so defeated. i have felt like that with numerous dr's...feeling like i was a waste of time or a burden that wasnt being taken seriously. What a horrible feeling. I cant wait to read more into the herbal remedies and find ways to manage all the weirdness. I cant remember if they had looked into lupus, but i seem to think so. THANK YOU for taking the time to respond. I am here for each of you also and will listen and be a shoulder for you. It sucks and its hard, but we will get through it.

lpaiges23, Your story sounds so similar to mine and, I guess, like so many others here. I'm sorry for your diagnosis but imagine it is something of a relief to not feel "crazy" any longer.
I, too, have been having symptoms for about 4 years. Saw dr in '12 for bladder issues and eye problems. Neither were infected and there was never a diagnosis. I also had the most unbelievable, debilitating headaches ... diagnosed as migraine. The list of symptoms is endless, but what finally got me back to the dr last fall was excruciating, migrating foot pain. I am normally quite active. Walk 5 miles a day, play tennis, ride horses, etc. Tennis fell by the wayside a couple of years ago. I could not tolerate the intense exercise or the heat and always ended up with the "headache". I had to stop walking last July because I was simply unable to walk, and I have not ridden the horses since the first week of October. As awful as it has been to not be able to be as active as usual, feeling so poorly has left me not really wanting to do anything anyhow. dr had no idea what was wrong with me and sent me to a podiatrist. He said I needed orthotics. Saw 2 neurologists, a rheumatologist, another podiatrist, and then the dreaded infectious disease dr. With the rheumatologist I had a positive Quest elisa/negative western blot. He told me it could not be Lyme ... we don't have it here. Since the Quest Eliza was the only one of dozens of tests I'd had that came back positive, I went to Igenex for a Lyme screen and western blot. The Igenex western blot igm was positive Igenex and CDC. Was then sent to infectious disease doc. Nope, she said, I don't trust Igenex and we don't have Lyme here ... so you don't have it. She ran additional tests and Ehrlichia came back positive but same story ... we don't have that here so you can't have it. I then went to a llmd. Final result after more tests: Positive Lyme, Ehrlichia, Bartonella, and a cd57 of 30. I have been on Doxycycline for about 2 and a half months. Many symptoms are wonderfully gone (hair loss, scalp sores, irritable bladder, eye problems) but I still have the foot/ankle pain, insomnia, terrible night sweats, miserable and constant ear ringing.
I have felt worse in general though since starting the antibiotic, but am pleased with the symptom reduction.
The folks on this site have been wonderfully supportive and helpful. They seem to be able to help with/answer just about anything. Best of luck to you!

Hi everyone! Rough weekend to say the least. Felt almost confused and lethargic after being in the heat. we live on a lake and are out often, seems to really push me over the edge. i scheduled my rheumatologist appt today. i dont quite understand why i am seeing him though...i do have severe joint pain, mostly in my hips, knees, wrists and hands...oh crap, my elbows too. AHH and my back constantly hurts. LOL. Oh lord, maybe that is why. Do people with Lyme get arthritis? Is that why i am seeing this type of doctor? I feel like i want to go straight to a nuerologist. They found "non specific white matter changes" on my brain years ago when this all begin but couldnt give a firm MS diagnosis and said to watch it going forward, like 4 years ago maybe. I am curious to see if this all correlates somehow. They diagnosed me with neuropothy and i felt like they just disregarded me. My brain fog is so bad. I used to be so different. Im too tired to even get my nails done. i dont do my hair anymore and usually just wear it up in a bun. That is NOT me. Im just too worn out to even care anymore.

"I have to see an infection disease doctor and rheumatologist next week."

This makes me leery and sad..... I have seen so many people go to these and it was just more money spent. I hope you fair better than most that I have seen. But these 2 types of doctors don't generally treat lyme. I think we have one moderator here that has a ID doctor that is treating her and she loves her doc. But, sad that she is the only one I know of.

Just don't want you to get your hopes up with these doctors.

A lyme literate medical doctor (LLMD) is really what you want to see. One that is ILADS trained.

Post Edited By Moderator (Traveler) : 5/30/2017 9:55:24 AM (GMT-6)

It's always best to seek out a specialist for what you are dealing with - and for these infections, that would be a LLMD.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​​​​​​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​You ​​​​​​ ​​​​​​​​​​​​can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​​​You can start a new thread titled something like "Looking for LLMD in the ​​(insert the nearest larger city & state)​​ ​​area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
​​​​​​​​www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​

​​ ​​​​​​​​​​​​​​​​​​Y​​ou can email ​​​​the​​ ​​​​Tick-Borne Disease Alliance at​: [email protected]​
​​

​​ ​​​​​​​​ILADS has their own referral system as well:
​​​​​​​​​​​​http://ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.lymenet.org/BurrGuide200810.pdf

You were positive IGM 23 and IGM 41 - On the Igenex test results - that is CDC positive.

No questioning - you have Lyme disease.

lpaiges23 said...
Thank you. My anxiety is through the rough. Is there a way to tell how long? THANK YOU ALL FOR YOUR SUPPORT. You have no idea how much you have eased my fears. i dont know any of you, but i love you all!!!!

How long you've had it? You said you've had symptoms for 4 years?

Then you've had it that long.. or longer

I'm glad you are feeling better - this is a great community - the kind people here have helped me so much - I was a mess when I first came here.