posted
Hi everyone! My name is Allison, Im 29 and from the Philly area where I live with my husband (we've only be married 5 months!), Brian.
I have a complicated medical background. In '99 I had thyroid cancer and my thyroid was taken out and my thyroid levels have been up and down my whole life.
Recently, I was in the hospital for a week because I lost all gross motor skills quite rapidly and was so disoriented that I couldn't speak, walk or think.
While I was in the hospital, they found out that my TSH was close to 400 (normal is 0 - 2). So they changed my thyroid meds and now I am on .300 of synthroid and 25 of cytomel plus 30 of cymbalta to help with the pain which they said in the hospital was fibromyalgia.
While I was there, they also found a 5cm mass on my pituitary gland - not cancerous - just there, being annoying, causing my vision to blurr - oh, and I was also losing my hearing very quickly as well.
Fast forward to two weeks ago.
I went for my follow up with my doctor and she told me that a Lyme test (titer) and Western blot test came back positive for Lyme Disease.
I had been tested for this growing up, and had nothing show up. I never saw any bite marks on me either - even though I was just in Mexico in October and did get some bug bites there - but no bulls eye rash.
So she prescribed me doxycyclene and Im almost done with the meds now. BUT, I am in HORRIBLE pain - EVERYTHING hurts, all the time and Im in constant tears.
I go to work (Im a special ed teacher) because my husband and I need the money - but the pain is stealing my life from me. I have to come home and sleep immediately because I am just SO exhausted, all the time.
There doesn't seem to be a LLMD in my area that accepts my insurance, but Im going to go to the support group meeting in my area next week to see if anyone knows anything there.
Can anyond give me a kind of "here's a check list of things to do first" to make me feel better?
I dont want to eat, I can barely move, I want to sleep all the time and the pain is everywhere from head to toe - even the feeling of sheets on my skin feels like someone is ripping my skin off.
The dr I saw (my primary) said she "thinks" ive had LD for "a long time" because "my numbers were very high".
Any help would be most appreciated. Im "sucking it up" the best I can (going to work, etc), but I am just crying all the time from the pain and the tiredness and the confusion.
Thanks for the help! Blessings - Allison
-------------------- "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." - Isaiah 40:31 Posts: 5 | From Philadelphia, PA | Registered: Feb 2010
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
sorry you are going through this- i am also newly diagnosed. As far as my research goes, most LLMD do not accept insurance. Most of us are paying a lot out of pocket. But they will most likely give you a form to fill out a claim to submit to your ins. co. for partial reimbursement. This only works if your ins. co. let's you go out of network. Unfortunately, mine does not.
Good luck to you
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Sorry Allison. I wish you didn't have to come looking for this website and support.
Before I got to reading what you doc said about "you having this a long time", I had already come to the conclusion.
I'm would bet you had been mild, acute maybe for awhile, maybe years and then the bites in Mexico was the straw that broke the camels back. Sounds like you have gone into the chronic stage.
I know there are LLMDs in PA but I don't know if they take insurance. Many LLMDs don't. I wouldn't mess with insurance companies unless it was a must either!!!
You do have a positive test that you can use to get your insurance company to pay for a LLMD who does insurance. I hope someone from the northeast comes along with some names for you.
Did you regular doc get you going on abx? Doxycycline 300-400 mg a day until you can see a specialist?
We know your pain. I know your pain "head to toe" because I use to tell my doc that when I went chronic quickly. It is exhausting and so frustrating.
I hope you are taking some ibuprohen or something silimiar in higher doses than your normally would take. I know I was a no pill type of lady before this started. But you need to do something to help the inflammation that goes with it.
There's nothing wrong with just working and coming home exhausted and sleeping. I know it's not your life style but for now, it's real important that you get as much rest as you can.
Feeling fatigued is part of lyme & company but it's also the body's way of screaming to you REST REST and more REst.
I hope you find you path soon.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Allison,
I'm sorry to hear of your struggles and hope that you can find good answers here. Focusing only on one practical matter:
If you are using your real name here, I suggest changing that for security purposes and also for insurance purposes (they do search the web and they really like to deny treatment for lyme). Even using a last name is a huge security risk.
Employers (and potential employers for years to come) will search the web for all traces of an employee's activities. You don't want to be traced to having lyme as that could put your job future at risk.
Also, by using your husband's first name in a post, that is a security risk to him, too.
With one search, I was easily able to find your home address and phone number. So, please find out a way to delete your name, and your husband's name here for your own safety.
It's not enough to just change your web name from now all, all evidence of this current thread with your name needs to be able to vanish from any future search (after you copy and paste replies to your personal file).
As to how to do that, I'm not sure, but you could post over in the Computer Questions forum - or click onto the name of a moderator and send a PM:
posted
If you have trouble figuring out how to PM "Jenifer" .. let us know!! You really should be anonymous here.
There are many things you can do for pain, though some of the solutions would make it hard to teach.. but then again, doing that in PAIN is hard to do also!! (been there)
Did you go to Seeking a Doctor for help in finding a Lyme specialist?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Realizing I responded re some of your medical concerns in Seeking A Doctor - please go see - thx.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Your reaction to the doxy sounds like herx. Read newby links for description. What dose are you on? Some docs ramp up on first timers to prevent the most damaging herxing. That is, start low, and work up.
There are very good support groups in SE PA.
And please do remove your full name.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks for the info about my screen name. Actually, because I used up all my personal, vacation and sick days at work, my employer had me fill out FMLA pper work to describe my chronic condition which my primary listed as Lyme Disease and Hypothyroidism. She listed all the problems that result as having LD, tha tI may miss work for treatments or because of relapses, etc. and my employer is actually really supportive - guess Im pretty blessed because of that
But thanks for the info and I did PM Jennifer to change it. Im actually really public about the various conditions that I have and work as an advocate for them in my area. Im headed to my area's support group on Wednesday - yay
To answer Lou's question, Im on 300mg of doxy every 12 hours for 14 days. Im taking extra strength tylenol during the day and flexiril and melatonin at night.
Thanks for all the support and feedback It's nice that such a supportive and helpful community exists :-D
<3 ~*~A~*~
-------------------- "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." - Isaiah 40:31 Posts: 5 | From Philadelphia, PA | Registered: Feb 2010
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posted
The most important thing is that you continue with your doxy. Don't be fooled into thinking that a few weeks is enough. You must continue until the pain is gone and then keep taking it for months or longer. You may have to think in terms of years instead of weeks. It's painful to think that way but it may be more realistic especially if you've been sick for years. I get my doxy from Costco for about 15 dollars a month. Start there and dig in for a marathon, not a sprint. God bless you, and remember you are not alone.
Posts: 19 | From Oakland, CA | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I too lost my thyroid, but before it got to cancer.
If you have been sick that long, you most likely
have other bugs also, beside Lyme. I would find a
LLMD to help you, even if you have to travel.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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