posted
Hi, I am a newly diagnosed Lyme patient. This is going to be a long post, I know there is a specific way that Lymenet prefers that I type out my post but I am not real clear on how that is.
I have been sick for what I figure from my symptoms since late July 2011/early August 2011. I never saw a tick and I never had a bullseye. I just started having major gut issues and then the brain fog began to take over my life.
Just from going back and trying to figure out what I was doing just before I started showing symptoms, I had gone camping in late May 2011. At this point I never thought anything about Lyme disease. It took months of being very ill with my gut symptoms, brain fog and depression.
I am diagnosed Bipolar Disorder I and deal with depression a lot but I am also on meds so I thought I had that somewhat under control but when the symptoms all started showing up, I didn't know what to think of it.
First I went to a GI doctor who ordered a Endoscopy and Colonoscopy, they found nothing and basically closed the door as it was all in my head.
I then was referred to an Internist who did some more blood test and determined my Vitamin D was low and he did an ELISA that came back negative. He said I do not have Lyme disease. I requested a Western Blot test be ordered.
I went to another doctor who ordered some more blood results and they came back with my TSH as 5.900, Hypothyroidism. She started me on Armour for my thyroid. I had asked this doctor to do the Western Blot. It came back as negative but the IgG band 41 came back as Present. So they said the test was negative.
My ASO Titer was also high which concerned the doctor as well as my Thyroid Peroxidase was High. She wanted to recheck my ASO Titer and that test came back as high again. With my gut issues, she wanted to re-check me for celiac disease but the test came back normal.
I went back to the Internist and he did another blood check and my Vitamin D came back better as well as my thyroid since I had been on the Armour. My Vitamin B-12 came back better as well. My Thyroid Peroxidase Antibodies came back as high again. Again, My ASO Titer came back as high.
Another visit to my Internist came back with my Calcium as High. I don't remember him ever saying anything about that. Finally in October after all of the symptoms were not pointing to anything in general I sent my blood work to IGeneX, Inc.
While waiting for those results, I was told by my GYN that I needed a hysterectomy so I had that done in late October and I am in recovery right now.
Going back a little, per request of my psychiatrist I had a MRI without contrast of my brain. With the brain fog I am suffering, I don't understand the findings but I do have the diagnostic imaging report. I then had a QEEG of my brain which showed that my brain was basically extremely slow or asleep. I have the chart of the QEEG that shows what part of my brain is slow but I can't understand how to read the chart too well, there is the Delta, Theta, Alpha, Beta and High Beta. They did it with my eyes shut and open. I just wish I could understand what all of that meant and if it related to the Lyme in any way. The doctor who preformed the QEEG suggested that he could help me with neurofeedback. I'm not sure where to go with that.
Wednesday last week, November 14, 2011 I went to the doctor or ordered my IGeneX, Inc. labs to see the results. I went alone really expecting to be told they were negative. I had gotten to the point where I thought this was all in my head.
None of the doctors I was seeing would believe that I could possibly have Lyme, which confused me how they could rule it out so fast with all of my symptoms. I will list my symptoms in a moment.
I sat down and she basically told me that my test showed I am positive with Lyme. My IgM results were 31 and 41 positive with 39 IND. I go to see my LLMD next week. They started me on two antibiotics, Tindamax, 500 mg 2X a day and Ceftin, 500mg 2X a day.
I pretty quickly started the HERX reaction. My brain fog increased, I have severe head, neck, shoulder and lower back pain. I feel like I ran a marathon my muscles all over are so sore and I feel like I did squats and weight training after having not done it in a while.
I am not sleeping well and having strange nightmares and I am extremely depressed. And although I have been dealing with this, my senses are hyperactive; taste, smell and hearing. It is all so overwhelming. I started taking the antibiotics November 14th in the afternoon and I am still feeling this way.
Here are some of my symptoms, sorry for the overload; brain fog, joint pain, lowerback and hip pain, shoulder/upper back pain and spasms, neck pain, stiffness and spasms, severe headaches, eye blurriness, dryness, feel weird.
Petechiae, thrush, chronic yeast infections, depression, severe anxiety, internal and external tremors, tongue tied, exhaustion, abdominal pain, altered sense of smell, taste and hearing
Too many sounds at once overwhelm me, my body feels hypersensitive to sounds, touch, smells, taste, even my hair/scalp.
Extreme weight loss (66lbs in less than a year), lack of focus/concentration, mitral valve regurgitation, swollen and sore lymph glands, extreme dry skin, jaw cramping, heart palpitations, small head sores.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Welcome to LymeNet! And, congratulations on getting your lyme diagnosis so quickly. I also did not see a tick bite and did not get a bulls eye rash, so it took 10 years of sickness before a doctor tested me for lyme and I got my diagnosis.
We will be happy to help you here any way we can. I have 2 suggestions for you:
1. Read and STUDY the Burrascano lyme treatment guidelines found here:
They will give you your education on this disease. Then, you will be able to evaluate your doctor's treatment of you. Very important!
2. Find the very best lyme doctor you can. Many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
I have been around lyme now for 10 years, and that is my conclusion. It was my 3rd lyme doctor who cured me. That was over 7 1/2 years ago. The first 2 docs didn't know enough to get me to wellness.
It takes a lot of knowledge of this disease to be able to cure someone. Find a doc who has cured it for at least 3 people. That's my advice.
You can also contact the lyme support groups in your state and nearby states. See Support Groups on left side of page.
Wish you the very best!
Posts: 9931 | From Maryland | Registered: Dec 2007
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I think I'll move this to Medical Questions where more people will see it.
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