posted
Hi. I'm a 52 year old female in Oxford, NC. Last May, I remember finding a tiny tick on my arm. I lived on the VA border. As I usually do, I was on the lookout for a round rash. None appeared.
A week or so later I came down with a serious flu. I remember barely able to get off the sofa, having terrible joint pain and a high fever.
I've been sick and fatigued off and on all year, but I muddled through. Chronic sinus infections plauged me and I had shingles in my MOUTH. 😱
I even had sinus surgery in February hoping the infections and fatigue would be behind me. I continued to run a low grade fever.
I started having symptoms of incontinence in January 2017. I also developed crippling anxiety, mood swings and depression.
I hadn't had a huge change in my life, so I chalked it up to chemical changes​. I started on Zoloft, 50mg then 100.
In late March early April, I had enough energy to do yard work. I sprayed Roundup, moved​ dirt and gravel, transplanted and planted.
Within a week I began to tire more easily. I became more incontinent, light headed, and had pain in my left upper abdomen and pelvis.
I was treated for two back to back UTIs, which turned out not to be infection. A CT scan from May shows enlarged "reactive" lymph nodes on my liver and a slightly enlarged spleen.
This result was evidence enough for me to request a Lyme's disease test two weeks ago. It was negative.
I'm now going on my sixth week of being too tired to get to work, bathe frequently or get house work done. I'm also having headaches, back, neck and joint pain. I get rashes on my cheek bones and palms.
I need a referral because after my Lyme's test was negative, my doctor wants to up my depression and anxiety meds.
I never needed these meds until this spring and believe me, I have had a pretty crappy set of circumstances to get through in my 52 years.
I have bc/BS of NC employee insurance and am currently being treated by my PCP at Duke Primary care Oxford. I'm open to dietary changes and am using essential oils currently.
I had a referral to Duke ID, but their first available appointment is July 2018. Looking forward to hearing from you soon. Thanks,
-------------------- "A man can no more diminish God's glory by refusing to worship Him than a lunatic can put out the sun by scribbling the word, 'darkness' on the walls of his cell." - C.S. Lewis Posts: 2 | From NC | Registered: Jun 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Based on everything you have said, I have no doubt that you have lyme disease. Doctors are woefully ignorant of this disease!
For that reason, it took me 10 YEARS of going from doctor to doctor looking for a diagnosis before one thought of lyme disease. (I never saw a tick or got a rash.)
What you have to know is that the lyme tests are unreliable. Knowledgeable doctors know this, but they are rare. We call them lyme literate.
Duke ID and nearly any other ID is not going to treat you properly. IDs believe that lyme is RARE and EASILY cured.
Since you have had lyme for at least a year now, you are going to need long-term treatment.
Unfortunately, there are no really good lyme specialists south of Washington, D.C. Are you willing to travel to the D.C. area to get good care? If you want an immediate appointment, I can give you a doctor who could see you right away.
If you want a much more expert doctor, you could see her in a few months.
Let me know. I will send both names to you with lots of info about each of them.
It will give you your education on lyme disease. See p. 7 where it says that the lyme tests are unreliable. It says that symptoms, history, and your reaction to a trial of lyme meds forms the basis for the diagnosis.
See pages 9-11 for a good list of lyme symptoms. Make a VERY complete list of all of your symptoms and take that to your first lyme doc appointment. This will help the doc make your diagnosis.
Some docs will even say testing is unnecessary in your case.
Just know that you won't have to travel much to see these docs. After the first in-person appointment, you can do telephone appointments monthly and email with minor issues.
So, you will travel to see the doc every 3 or 6 months. That's it.
Many doctors treat lyme disease, but very few know enough to cure a person of it. I recommend the few that know enough to do it for a person. Go for expertise. That is how you are going to get well.
You must forget all of the major medical institutions for lyme treatment. They all follow the IDSA's stand and will not treat you long enough to get you well. I went to Johns Hopkins looking for a diagnosis and they did NOT know what was wrong with me.
Then, I went to a good endocrinologist who did NOT take insurance and was very expensive. He gave me my diagnosis 2 weeks after the great Hopkins could not and thought that perhaps I had a brain tumor.
Welcome to LymeNet! We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for your quick response. I have even more symptoms that I hadn't mentioned. Hopefully that will save me the expense of the Western blot test. Are both doctors you suggested located in the DC area?
I can travel to DC. Since I am caregiver for my Alzheimer's father in law, arrangements have to be made for him. I'd like my husband to go with me since my memory is crap, plus I'm not driving long distances these days.
I'd welcome an email with the information and details. 😃
Also, do you have a ballpark figure on how much appointments and treatment cost?
-------------------- "A man can no more diminish God's glory by refusing to worship Him than a lunatic can put out the sun by scribbling the word, 'darkness' on the walls of his cell." - C.S. Lewis Posts: 2 | From NC | Registered: Jun 2017
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So sorry you are going through this. You are not alone!
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!
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, so you need to go where they are. At least half of all Lyme patients travel out-of-state for proper treatment.
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":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please 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 the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 9020 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I sent you all the info on both docs, including prices. So happy you are willing to come here to get great care!
Let me know if I can help you further. I would be happy to do so. I stick around LymeNet just to help those in need of a very good lyme doctor.
My desire is that every lyme sufferer be restored to health.
Like your C.S. Lewis quote. Oh, the glory of our Great God!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Lakebite in beautiful Oxford!
So sorry to hear of all these problems you are having! I do hope you get some help soon and can start skipping down the road to recovery.
I'd like to say at least one ID at Duke (Lantos- pediatrician) who has a big mouth and pretty much hates Lyme patients, Lyme doctors and our labs, etc., is a pig. That blunt enough?
And once "Duke" says you don't have Lyme, it will be very difficult if not impossible to find anyone to go against "Duke". This, or any negative reports, could hurt you with your insurer.
Got a list a mile long why you should avoid him and because of his mouth that blabbers world wide, avoid Duke totally.
That said...
If you go to www.VirginiaLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".
Click there to find the names and contact information for health care professionals in many fields who are treating Lyme & TBD's in all of the states.
There is one in Chapel Hill, not far from you at all. I believe she is/was an ID doc, so your insurer might accept her diagnosis over some others who aren't trained in that field. ???
Here is a list of tick borne diseases including symptoms, ways to diagnose and treatment info.
Wherever you go please remember to bring up the possibility of the "other Lyme disease", Borrelia miyamotoi. It will not react on standard Lyme tests because the tests were not designed to detect it.
It is being found in your area, and is a "relapsing fever" Lyme disease. Info here for you.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Lakebite, I was infected with Lyme and Babesia in that same area in 1998. Near Kerr Lake, so I am positive these diseases are there. I was able to get everything in total remission with help from an excellent doc. Kept everything in remission for years. Sadly I was recently infected with Borrelia Miyamotoi while camping in VA, then on top of that, got RMSF from a tick 2 weeks later in Greensboro NC. Tick borne diseases are all over NC but most docs won't acknowledge it. Hope u can find help soon.
Posts: 2276 | From NC | Registered: Oct 2000
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