posted
Hello. I live in Maryland. I am 29 years old and over the past 8-10 years have seen 30+ Specialists for a variety of medical symptoms. They have been progressing over the past few years, and migrating or varying in severity.
I was told by a few folks who have Lyme and some specialist that it sounds like Lyme Disease. I only moved to MD 1 1/2 years ago. I am originally from Southern NH and have lived in New Hampshire, Massachusetts and Connecticut most my life. I was bitten by ticks quite a bit growing up but do not remember being sick. We grew up in the woods with pets. We had 2 dogs positive for Lyme and co-infections.
Symptoms include muscular pain, widespread, weakness, join pain that moves, fluid in my hip joints, positive tilt table- low blood pressure that drops upon standing, GI issues that flare up, menstrual issues, various deficiency over life, easy bruising, dizziness, confusion, head fog at times, fatigue, energy crashes, heat and cold intolerance, Renauds syndrome, feelings of heart weakness(normal ekgs, ultrasounds,only one cardiac episode of high HR when wearing month long harness), trouble catching my breath (asthma neg), sometimes random tingling or numbness, dry skin that gets rashes(not like the EM ones..I think),GERD, IBS, hx of bladder issues,sleep issues etc..
I am now gluten free and very good with my diet, I exercise when I am able, I do not drink or smoke. I have a specific bedtime ritual and rest when needed. I am on 2 nerve medications and an anti inflammatory with little improvement, as well as a sleep medication, GERD medication and birth control. I am trying to go back to school however keep sliding down hill.
I have been diagnosed with everything from a low immune system Igg2 deficiency (now it's fine I was told?), to fibromyalgia, chronic fatigue syndrome, or 'just mentally ill'. They know there is a large inflammatory response in my body but can not tell what it is. They say it is not RA or Lupus. No one has mentioned MS. I look fine and can fight through much of this, however I do not feel well and now it's getting to where I can not hide it some days.
My Lyme testing was negative, all of it. Co infection testing, and an Igenx test even. Online it says this could still be Lyme, however the Lyme doctor, Dr. M in MD, she says I should try anti-depressants! I am not depressed, she says it's safer and even though I do not have depression symptoms, they could still be playing out in my body. This is not possible. I was depressed 3-4 years ago, and my body symptoms were not this bad. I know what depression feels like. They tried anti-depressants years ago and they did not work for me. I am lucky and have worked though what was causing my depression and I no longer feel that way. My case was not chemical, I went down that road.
She said I could get a Lyme Culture, however it is not definitive and if it is not positive she said she wants me to go on the anti depressants, I am not wiling to do that. Been there done that. She told me without a positive test, I do not have Lyme, even though she thought I have the background and symptoms.
I am thinking I should get a second opinion. This is costing a lot of money, I took out a loan to do so, co signed by someone, as I am disabled. Any suggestions would be greatly appreciated. I contacted ILADS they gave a few referrals, one being Dr.R in MD who is not taking patients and referred me to Dr. S-W in the same practice. I am on a waiting list to see her. I was also told Dr. J in DC is good, saw him on the Documentary. I am apprehensive about losing more money.
I just ordered Dr. H's book. I did call his clinic in NY, however they are not taking new patients.
What you all are doing here is great. This is tough stuff....I hope to give back and help fight this fight. I have been researching non stop. Finding a doctor who is valid is challenging! Thank you kindly. Wishes of healing to you all.
I have never used a forum before, I hope I did this correctly.
-------------------- "What lies behind us and what lies before us are tiny matters compared to what lies within us." Posts: 1 | From Maryland | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi. Welcome to LymeNet! Good for you for asking for a lyme specialist here. I sent you a name and lots of information.
I suggest you look at the list of lyme symptoms in the Burrascano Lyme Treatment Guidelines. The list is on pages 9-10. Make a very complete list of your symptoms to take to your first lyme doctor appointment. This is important because lyme is diagnosed based on symptoms since the tests are pretty inaccurate.
I think you are wise to get another opinion. You HAVE to keep searching for an answer. Your life is at stake.
I went from doctor to doctor for 10 LONG years before I got my lyme diagnosis. I was offered antidepressants when all of their routine bloodwork came back normal. I knew I wasn't depressed.
Don't give up. We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
Many here have experienced what you have gone and are going through. "It's all in your head" is very common to hear when they can't explain what's wrong!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information, so you made a wise choice in getting it.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
I was also going to suggest you view "Under Our Skin" for free on www.hulu.com. Glad to read you already have.
You did quite well seeing that it is the first time you are posting. I would recommend you break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click on the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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