New to the forum...finally ready to post

Hi everyone...I found a tick embedded in my leg back in 2002. I disregarded it since I only found a tick & no bullseye-if only I knew then what I know now. It's been quite an almost 12 years & my story is long...I don't feel well enough right now to write it all, but I'd love to share it when I'm feeling up to it. I have tested negative for lyme through Quest Diagnostics multiple times, one time showing reactive to IgM band 41 which I know doesn't mean much, at least by itself. about a month ago I saw an LLMD who told me that my symptoms were highly suggestive of lyme & that he most likely would end up treating me even if my Igenex came back not showing anything. That made me feel great relief, but I so desperately wanted to see a positive result for validation. Mainstream doctors have been cruel, either almost laughing at me or becoming irate & raising their voice to me when I mentioned lyme. They don't believe you can actually have lyme if your tests come up negative through standard labs. My symptoms are short term memory loss, eye/muscle/finger/lip twitching, shooting/ stabbing pains, carpal tunnel, palpitations (esp after eating something high carb or sugary),migrating joint & muscle pain, bursitis of left shoulder & right hip, vertigo, migraines, shortness of breath, ringing in ear(s), difficulty with word retrieval, jumbling words, low grade fevers, cold intolerance, fumbling objects, dry eyes,crawling sensations, feeling of something wet on my skin & it's not, itching/burning but from the inside, balance problems, foot pain (especially when i wake up),pain in ribcage, nausea w/ and without dizziness, scalp rash, anxiety, head pressure, mild sore throats, swollen lymph nodes, brain fog, eye floaters, creaky joints, back & neck pain, pains in spine, & unfortunately more. Many of my symptoms come & go. Many also vary in intensity. Due to a positive ANA my PCP sent me to a rheumatologist-he diagnosed me with Undifferentiated Connective Tissue Disease since I had a positive ANA but all other tests came back negative for other rheumatic diseases. I have Hashimoto's-endo says my thyroid is fine & not the cause of any of my symptoms. I also have benign nodules. Vitamin deficiencies-rbc magnesium, vit D3, ferratin, vit C. I've also had a very low WBC count for years and neutropenia. I'd like to know your thoughts on my test result as I wait another week to see my LLMD. Thanks :)


Igenex IgM result NEGATIVE
CDC/NYS result NEGATIVE

23-25 IND
31 IND
39 IND
41 ++

Igenex IgG result NEGATIVE
CDC/NYS result NEGATIVE

41 IND

Post Edited (krissym) : 8/31/2014 12:27:12 PM (GMT-6)

Hi, and welcome. If you go to the "New to lyme" post, you will find a lot of helpful information. Unfortunately, yes, the medical field does not believe that lyme is such a complicated bacteria and that the CDC tests are mostly worthless. They do believe that a negative test is in fact negative, it does not matter if the symptoms are strongly suggesting lyme. They also believe that it can be cured with a short course of antibiotics. I guess lyme is a topic they barely discuss in med school. Meanwhile we are left in the dark. Thank God for all of those humane LLMDs and NDs. They are the one helping us out. God bless them all.

Welcome. Your story is very similar to mine in all aspects. My igen3x also came back negative but with 3 bands iND and 2 bands positve (1 IgM, 1 IgG). I'm in my 11th year and saw llmd for first time this past march. I started treatment in April after testing positive for anaplasma and mycoplasma. My cd57 was 55 last Fall. Im glad your are going to see an llmd, hopefully you will be encouraged after the visit. There are a number of us here who have been sick as long as you and just stsrted treatment so we can share our ecperience and encourage each other.

I am curious geographically these days, where did you get the tick bite in 2002?

Yes, I am also interested where you were bit, in reference to location in the world/usa. I think i was infected around the southeastern PA area. But, I"ve traveled north and south, plus in parts of Europe, so....who really knows where I've gotten this.

The symptoms you listed match mine exactly, especially with
"& unfortunately more. Many of my symptoms come & go. Many also vary in intensity.'

It is good you are with a LLMD now. Regardless of the test results, the cdc clearly states that a diagnosis is to be given in reference to SYMPTOMS. The Dr's arent' doing this, as they are ignorant/or afraid of the backlash they could get.

There are good dr's out there. Trusting your's is, and treats you as an individual. All of our cases are so unique and individual, and our treatments must be fined tuned to the individual.

I've also been dealing with undiagnosed/misdiagnosed for 14 yrs. Just started low dose antibiotics about 1.5 months ago, and doing quite well. Not 100%, but I'll take the 70% I'm at now, rather than the past 5 yrs at 40% and less. I see my LLMD for 2nd visit this week, and he will have me do a Vit C IV, administered in the office, and I don't know what else. He might up my meds. Whatever, I'm better now than I've been in a long, long time. I had almost given up all hope.

Don't give up hope, or stop trying to get what you need to heal. I hope you also have support. I believe that can either make, or break us. We need support. We are here for you.

Thanks Breaking Free & Mister Mike!

I lived on Long Island, then in PA for 8 years-the Poconos-but as I said, found the tick on me on Long Island. Both are lyme endemic areas. I feel I may have bartonella & babesia since I have many symptoms like light sensitivity, foot pain, shortness of breath, head pressure, anxiety, muscle twitching, dry eyes, etc. I am looking forward to treatment, but I have to say, I am a bit overwhelmed as I have spent the last 11 1/2 years knowing I wasn't well, that something was wrong, & now possibly finally having the answers...wow. I have 4 children that I gave birth to since I believe I got infected-in addition to that, 2 have had bullseye rashes that were dismissed & 1 I removed a tick from in his hair. My children ALL seem to have symptoms, but I need to begin treatment & get my footing before I can head down that path. And, I believe my husband has it too...especially since I realized last week that I've been experiencing many cognitive difficulties that he's been dealing with for years. Please keep my family in your thoughts & prayers...I have a feeling this is going to be quite a journey.

Lymebabe-I was tested through Quest for MTHFR & it was negative. What is HLA? Myself & my children have mold allergies as well.

Krissy there is a difference between a mold allergy and the body's inability to remove it. HLA gene (among other things) regulates the removal of mold. If there are changes on this particular gene you just keep accumulating mold in your body as you come across it in life. I was a teacher and the school was terribly moldy. My hair started falling out a year after I started teaching there. My body just kept storing the mold. This can happen with organic solvents too (benzene, toluene etc.). I went to Sponaugle Wellness and there were people there with horrid levels of these chemicals and they had no idea where they got exposed. It was quite scary.

kg, I saw the dr in Myerstown! You are in good hands!

Thank you for all of the support and suggestions everyone.

Kg-At my first appt with my LLMD I was telling him how all drs want to do when they have no answers is tell you it's anxiety or depression and write scripts. He said, "It's not anxiety and it's not depression. It's not in your head, your symptoms are very real." How many years I've waited to hear that. I cried & he actually cared. So far, I believe I am in good hands too. We shall see come Friday.

kg-I watched it about 2 months ago. It was hard to watch, but I'm glad it's out there...people need to understand the true devistation that Lyme can cause. Have you seen Emergence? I haven't yet, but I'd like to.