I’m at a loss

Hello everyone,
As I write this I am crying bc I am at such a loss. I started feeling ill the end of 2006/beginning of 2007. I was diagnosed with fibromyalgia and just spent the next 11 years in pain. Recently my father had started feeling a lot like I was. He got tested for Lyme and was positive. He begged me to get tested too bc in 2006 I found a engorged tick on me and actually did get a rash. But it wasn’t until my father told me about Lyme disease that I even knew you could get sick.
So I take my fathers advice and request a test. It comes back only positive for the abnormal IGG 41 band. Which I read would be normal for someone who has had it for 11 years bc it has moved out of my blood now and into my tissue and stuff.
My pcp refers me to infectious disease to start treatment bc of Everything including really swollen Lyme nodes. I went there today and it was such a heartbreak. He came in and looked at the cdc overall negative and told me that there is no Lyme in my area so I do not have Lyme disease. I asked about why the positive abnormal IGG 41 and he didn’t say anything but wrote in my chart it was a false positive. How in the world can he say it is a false positive when he put in for no test to recheck for it? I’ve been in pain for so long I’m just so mentally and physically worn out. What’s even worse is he said all my symptoms were from lack of sleep. That was the diagnosis I got. I am so so upset. I don’t know what to I do. I know I got bit. I know I had the rash. I know it’s been so long that it would have been unlikely to get cdc positive. So what do I do? I really need. I live in the south east and I don’t see any even good infectious disease doctors. If anyone has any tips or anything I can do please share because I am seriously so heartbroken about all this. Thankyou for taking the time to read this.

I am so sorry you had such an aweful experience.
I live in Australia and went undiagnosed for 19 years because no doctor here is allowed to treat it. The authorities believe it is not here at all. Although these days a few specialist will treat lyme if you can wait 6-12 months to get in.
I had quite a few times I had doctors tell me I was being a hypochondriac. A lot of people with lyme have the same experience. He just isnt the right doctor for you and you deserve so much better.
Get a second opinion and while you are waiting you can start herbal treatment - something like the Buhner protocol until you can find a doctor that supports you. I have never been to a doctor for lyme and I am a lot better now just taking the herbs. When I first got a diagnosis I was so allergic I couldnt take anything at all my system was so hyper sensitive. I got a rife machine and that helped, then I started on oregano oil until eventually I had improved enough to be able to take samento, japanese knotweed and teasel root.
The 3 together work a charm for me. You will be OK. All the best to you.

I have so many symptoms. Started with severe joint and muscle pain,severe headaches, stiffness, my legs are really weak. It’s hard to like roll over when I am in bed. I have tingling in my hands and feet. I have a really sensitive sense of smell, am very sensitive to sound and light. I have terrible pain between my shoulders. When someone touches me it feel like under my skin is on fire. My lymph nodes are severely swollen. My short term memory is completely gone. That has slowly gotten worse to where I can’t remember anything anymore. I have bad brain fog. Have trouble communicating. I can’t sleep at all. I recently started having heart palpitations that is freaking me out. I have hip bursitis that has recently moved to my left hip from my right. I’m extremely irritably. My hair has been thinning a lot. I get sweats and chills. I can’t tolerate heat at all. It makes me sick. I am so so tired. Like even if I sleep I feel exhausted. These are just the things I can think of off my head right now. But I seriously am in so much pain, this sucks.

Megan H said...
My hair has been thinning a lot.

That really surprised me. After antibiotic treatment, my hair started growing back.

I hadn't realized that was a symptom of Lyme disease. I thought I was just getting old.

Yes. It caused a variety of symptoms that I never associated with Lyme disease. Also things like allergies and prediabetes. I didn't realize it was due to the Lyme disease until it went away with treatment.

I live in the south east, too. Doctors are idiots, liars, or both. I was only band 41 positive on WB, too. I had DNA Connexions test and was positive for borrelia and ehrlichia. Symptoms started Oct 2009. Positive test in Jan 2017.

BTW, I never had a rash or a known tick bite.

What do I do? With only band IGG 41 abnormal I don’t think any docs here will even look at.

Megan H said...
What do I do? With only band IGG 41 abnormal I don’t think any docs here will even look at.

You go to a lyme literat Dr.

Megan H said...
I’m trying to find one but I am not having any luck. I have 3 small children so I can’t travel super far away as two have school now.

I have some listed within 2-3 hours from Jacksonville.