HealingWell
Search Close Search
☰

Do I have chronic Lyme's? Do I have Lyme's? Help!

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/4/2014 2:24 PM (GMT 0)
Hi All!

I don't want to bore you with my whole life story because my health has definitely become a lifelong battle so here is the short of it... I was bit by a tick almost 10 years ago now, I found it buried in my leg. I was diagnosed with lyme's based on severe clinical symptoms immediately following the bite (severe joint pain, fatigue, weakness, etc.). I was given 2 weeks of doxy. I have never felt right since that day. I have literally every symptom in the books, which I'll list below, although I have never tested positive for lyme. Until my bloodwork came back 3 days ago. I tested "present-abnormal" for IgM p23 but no IgG. I have been to EVERY specialist that exists in the world for a slew of symptoms (cardiac, rheumy, neuro, Lyme Lit, ID, etc.) only for many of them to patronize me and tell me all my symptoms are due to anxiety (which I'm sure many of you know can be the most upsetting and frustrating part of all of this), or to diagnose me with vague diseases such as autoimmune arthritis and chronic fatigue. Any idea what significance this positive IgM p23 has without another band present? Is this finally a break in the mystery that has become my body?? Any insight would be not only helpful but words can't describe how desperate I am to figure out what's wrong with me! It's a daily struggle of morphing systems that seem to migrate all around my body as if I'm an airport for ailments! As soon as I get a specialist appointment, others symptoms pop up while others go into what seems a remission... Thanks in advance!

Dx:
Psoriatic Arthritis
Psoriasis
Chronic Fatigue
Carpal Tunnel
Mitral Valve Prolapse
Heart Palpitations

Symptoms:

Joint pain
sensitivity to light
sweats/chills (intolerance to temp)
headache
reactive hypoglycemia
memory loss
dizziness
muscle spasms and jerking
shooting nerve pains
blurred vision
raynauds
head zaps
confusion/ brain fog
extreme fatigue
sudden muscle weakness
numbness in extremities
occasional numbness and drooping on left side of face
ear ringing
TMJ
Emotional lability (literally extreme laughing turning into crying and back inappropriately out of nowhere)

Recent Bloodwork:

IgM p23- present abnormal
iron serum and saturation- extremely high while UIBC extremely low (going to hematologist soon on dr. request)
vitamin d deficient
EBV- very high
strep- very high
Posted 3/4/2014 2:57 PM (GMT 0)
Hi Ginny,

Even at this distance it seems pretty obvious that you were never treated properly for Lyme disease.

You should not rely on the tests for a diagnosis. They are largely inaccurate, they are not sensitive for many of the strains of the bacteria and co-infections also skew the results.

Your best next step is to find a Lyme Literate Doctor -- do stay away from Infectious Disease doctors as they will not treat you thoroughly. You can start a new thread entitled "Seeking LLMD in (state your nearest big city).

Also there is a thread at the top of the forum that has a lot of good information. "New to Lyme.. start here."

Looks like you are on the right track!
Posted 3/4/2014 7:42 PM (GMT 0)
Welcome to the forum Ginny! I'm sorry you're having to go through so many symptoms with your infection. I also recommend that you seek the care of a LLMD, since they go through training on how to diagnose it and treat it. There are LLNDs too. I hope you can find one soon so you can get started on treatments soon. We're here to offer you support as you go through the process. I wish you the best.
Posted 3/4/2014 8:24 PM (GMT 0)
Thank you both for responding! I did go to a lyme literate doctor a few years ago and he was let's say very short with me and condescending... He looked through my past bloodwork and said since none of the tests ever even showed that I had tested positive for lyme that I didn't have it. I told him that I had clinical symptoms immediately following a tick bite and he said that those symptoms could have been caused by anything... I have really had a motley crew as far as doctors go. I swear it's been a terrible time trying to get a doctor to listen to because the test never came back positive. (Even though now it finally showed the IgM p23). That and the fact that I've lived with generalized anxiety/depression, panic disorder, and am a young female, every doctor wants to blame it on an over-reacting young female who is a hypochondriac. I know I'm venting a little, but this is why I am at a loss. I have tried seeing the very specialists that are supposed to help and they turn me away. Then when this last blood test said IgM p23 present-abnormal I felt a sense of vindication and relief that maybe I was finally getting somewhere and not crazy (as my neuro told me believe it or not) and the doctor who interpreted my results said it was nothing significant because it was only one band and anyone who has had lyme before with show this on their bloodwork. I told him that this was the first and only time that this has showed up however and he literally waived his hand in dismissal. Is this one band along with my clinical symptoms enough to show a possibility of chronic and still ongoing infection? I've had to become my own detective because I have come in contact with so many chauvinistic male doctors who think all women are crazy hypochondriacs... Anyone else have the same problem??
Posted 3/4/2014 8:59 PM (GMT 0)
It's ok for you to vent here. :-) You should still seek the names of doctors in your area on here, since it could likely be a suggestion from someone in your area who has had experience with them. Make sure your email is enabled in your profile so people can send you the names. We aren't allowed to post them on the forum.

You're not alone with what you've been through with doctors. Many Lymies have the same complaints. I went through that when I was sick in my 20s, but I only went to 3 or 4 MDs before I turned to alternative medicine and got better. Others on here have been to several doctors, trying to find help and many do eventually. I hope you will find someone soon.
Posted 3/4/2014 9:24 PM (GMT 0)
Thank you for your encouragement!
Posted 3/4/2014 9:35 PM (GMT 0)
"I have come in contact with so many chauvinistic male doctors who think all women are crazy hypochondriacs... Anyone else have the same problem??" Boy!! Have I ever run into that!!! Ticked me off, to say the least!!! mad Things didn't go well as I walked out the door either. It's safe to say that even if I wanted to walk back into their offices, I wouldn't be welcomed!! devil LOL!!!

Hi Ginny!
Welcome to our community!!! I'm so glad that you found us!

As Garden Peace said - it's okay to vent here! Trying to treat these infections can be so very frustrating!! We have to be able to vent somewhere! Please just keep it "G" rated though.

Band 23 combined with your symptoms is very significant when seen by a good and knowledgeable LLMD. As you have already found out unfortunately, they aren't created equal, but we can likely help you find another one that will hopefully take you seriously. Or you can choose to use the natural/herbal treatments and either use a Holistic practitioner or use one of the "at home" protocols.

If you haven't yet, please read through our "New to Lyme? Start here!" thread, even though you aren't exactly "new" to Lyme. It's absolutely packed with important information like detoxing instructions and tips, symptom lists (as Lyme is rarely the only infection passed at that time), and so much more.

" as if I'm an airport for ailments" LOL!! I'm sure glad to see that you still have a sense of humor!!! I love this!!! And this is quite normal when a person has Lyme and other tick-borne infections. They can come and go so quick, be severe one moment and then some other symptom pops up and is more severe! Completely maddening! This is part of why these infections are so hard to diagnose initially.

You are not alone any longer - you have friends here! And....we happen to be going through the same weird things! smilewinkgrin
✚ New Topic ✚ Reply