Infuriatingly Frustrated at the Non Belief of Chronic Lyme & Co's

A blog I wrote about my frustration about a Chronic Illness

Infuriatingly Frustrated at the Non Belief of Chronic Lyme & Co's


I have come across a few websites & blogs written by Doctors who flat out refuse that Chronic Lyme Disease exists. They are arrogant & blatant in there opinions. They call us Chronic Lyme supporters delusional & the Doctors who treat us Quacks. I think to myself it seems a case of the pot calling the kettle black.

One Doc blogger in particular who writes for a blog called the White Coat Underground is so arrogant about the subject & won't let up. Believing the IDSA (Infectious Disease Society of America) are saints in his opinion. For us to question them is a sin. The comments that come from his supporters are pure ignorance.

It truly rattles me to my core. These people have no idea what we go through with this Disease. The burning, aching, deep down in the muscle & joint pain that racks our bodies. The brain fog so bad that we forget the name of every day objects no less the names & faces of our Loved ones. Crushing Fatigue, Headaches & pressure in our heads that leaves us unable to function in the most menial of tasks. Dizziness, nausea, Insomnia, Panic attacks, Anxiety, Tremors & nerve pain through out our bodies. These are only a few of the symptoms we deal with on a daily basis.

Yet when we go to see any main stream Doc about these symptoms they look at us like we are hypochondriacs. Or if Dumb founded by what it might be even when test results show there is something a muck they hand us a prescription for Anti depressants. As if that is the answer to all our problems.

I live in an area of the Country were there are no Lyme Docs in our State. We had one but he moved away last summer. No support groups for it so I started one three years ago. Through my own research & that of a fellow Lyme sufferer have come to find that we can't even find a Doc who will treat us for or even consider the remote possibility that we have Lyme Disease who takes Insurance or Medicare. There are a few Bio Med Docs who will try and help but they don't take Insurance & you have to pay out of pocket.

I went to see a Neurologist this past month who took my Insurance. I went in with the knowledge that this was probably not going to do me any good, But he I thought I might try. I chose this Doc because I had heard from another Lymie that he although did not believe in Chronic Lyme at the time he saw him he was at least respectful & open to discussing the possibility of it.

That he was. We talked about it & he ran his tests. Despite blowing off symptoms of, past diagnosis of, & Positive Spect Scans for Encephalopathy. He felt that there was nothing (in his realm of understanding) Neurologically wrong with me. The few blood tests that he took came back with extremely high Sed Rates & Fibrinogen level. Which concerned him.The fact that I was in obvious pain.


In a nonchalant round about way he asked how set in stone was the Lyme Diagnosis I had been given was. I said I had been Diagnosed by three different Docs over the last 4 year. He said hmmm. He said I think you might need to find a doc who deals with your issues. So without saying anything he admitted that there might be something to it but he did not want to deal with it or me. Oh and here a prescription for Prednisone (eek)& Antidepressants that supposedly help nerve pain.

Which brings me to another gripe about why in the hell do Docs throw pills at patients without knowing what is the cause of their problems. But I digress that is for another time.

 So once again I was left with no help. I was seeing that LLMD who lived here for 2 1/2 yrs. I had oral antibiotics for that amount of time but I had no real improvement. I saw another LLMD in Colorado but they had to close down their practice before I was able to try IV. I would love to go to a different LLMD.


But here I am 13 yrs after beginning with my first symptoms & 4 yrs after my first diagnosis by a Lyme friendly Doc. With maxed out Credit Cards, a Refinanced House, & deeply in debt. Still very sick & struggling to regain my health. Along with two sick children. #1 who has been diagnosed with Congenital Lyme Encephalopathy & Co infections. #2 who is showing all the symptoms #1 has. I treat the Alternatively the best I can.


We have Insurance but no money to travel out of State to see a Doc who understands what we are going through. Or to pay out of Pocket to see that doc once we find them. Yet these main stream Docs have the gall to sit there making crap remarks about how Chronic Lyme does not exist yet if that is what they think then why the hell don't they step down off their high &350 to $600 an hr horse long enough to do some research & find out what is supposedly "REALLY" wrong with us.

For me this journey has been a very long frustrating one. This is just a small portion of the telling of it. I often feel as if I am hitting my head against a brick wall. I know there are many who are right there with me with a very huge headache. But we keep fighting because we have no choice.