posted
Hi. I am a 48 year old mom of eight wonderful children. We have been home educating for 18 years and successfully graduated two children so far, with six children (and 13 years) to go. When my oldest was just beginning homeschooling in the late 90s, I was full of energy, ran the Wives' support group for my Navy husband's submarine, taught classes at a co-op and church, and had my oldest child involved in many activities, in spite of severe migraines which began the day after I gave birth to my second child just two years prior.
I can't honestly say when things started going downhill. I lost a baby after DS2, and my third pregnancy was fraught with anxiety, tachycardia, exhaustion, dizziness, and a lot of pain, so I think I must have aquired my initial infection in VA (though the issues with babies 3-6 occurred mostly in Florida...our youngest two are adopted).
I had a severe bout of mono on a trip to visit relatives in the Midwest...my spleen was so distented I looked five or six months that pregnant. I thought I was going to die and didn't want my kids to find me dead in the morning, so I made my first trip to the ER for help with pain, and they diagnosed the mono. In spite of the illness, a few days later I was driving over 20 hours back to FL with three kids in tow in horrendous pain. I used to be able to suck it up and do what needed doing in spite of the pain and fatigue. Now I cannot.
We moved back to VA from FL, and my last three children were inexplicably born six weeks early (all were fine for the most part...one was hospitalized for severe jaundice), and my last successful pregnancy was agonizingly painful, requiring much bed rest, holding onto walls to make it anywhere, terrible, unrelenting headaches, and an OB who just kept telling me I was old and should expect to be more tired (I was 40). My final two pregnancies ended in miscarriage.
In VA, we live on a 15 acres farm with many animals. From a few horses, to chickens and ducks (duck eggs make the best cakes!), to a rabbit, cats, dogs, and a turtle, we are surrounded by a zoo and if you go outside, no matter how much Deepwoods Off you use, it is not whether you have a tick bite, it is how many you get. I've gone for hikes in the woods to clear riding trails in the late summer, fall, winter, and spring, and found up to ten ticks on me in one day, some attached, some not. I've not gone out at all and still found ticks attached that must have hitched a ride in on someone's pants or a cat.
I was managing okay, in spite of more fatigue and cloudier thinking until about six years ago when we all contracted giardia following the flooding of our property when a nor'easter collided with the remnants of a hurricane (we live in a farming area and have a well).
After that, several times every year, I have wound up having major setbacks that have ranged from not being able to remember deadlines so having to give up my review blogging job to having to crawl up the stairs. Once, I was certain I had meningitis (I assumed it was viral as I did not die), but as both my folks and my husband were out of town, I never did make it to the doctor until I was starting to improve. I only made it through because I have access to pain meds for my migraines and my kids were awesome helpers.
I've had the ELISA test several times and always come up one number or less away from a positive result. My second son has tested positive and was treated for 28 days (I think he's still having issues, but try to tell a teenager anything), and several of our dogs tested positive for Lyme and Ehrlichia.
Finally, after pretty much displaying every Lyme symptom except complete paralysis ( though I did collapse in one of the horse pastures on a 34 degree day and couldn't get up for an hour), and going in to my newest PCM with evidence of at least fifteen bites, all of which were red, one of which had a spreading rash, and barely able to walk in and keep my balance, they decided to treat me with Doxycycline for ten days.
It seemed to help with some muscle and joint pain, but as soon as I was done, most of the symptoms returned. They agreed to another course of 21 days, 100 mg 2 x daily, which I am currently taking.
This time, however, I guess I am having a herx reaction as I am unable to stay awake at times and have had a return of the never-ending head and back pain and weakness. I've missed several appointments/activities due to forgetting them, even though there is a calendar next to my bed. I forget to look at the calendar!
I've been nearly every type of doctor with results from ambiguous to confusing and been treated for thyroid, migraines, endometriosis, neuropathy, cervical dystonia, and more...last time I saw him, my neurologist suggested Myesthenia Gravis. In looking that up, I saw one video that discussed similarities with symptoms of MG and Lyme. That's when I really stared looking into Lyme, as my symptoms fit it, plus a few co-infections better, plus the initial Doxycycline did help.
My doctor says they deal with lots of Lyme cases in our area and know what to do, but when I ask about herx reactions, dealing with the pain, etc. their responses are at best inadequate, at worst, insulting.
I'd like to find an LLMD close enough to the Tidewater/Greater Richmond area that I can afford to go for at least a few visits and some guidance. We've had one after another financial setback this year, and finding the cash will be difficult, but we will do what we have to because I need to be able to teach and care for my kids who are still school age (public school is not an option...I am still a certified teacher from before kids).
They may get a different mom than my first two got, but right now I am barely functioning. Yet last fall, I took hour long walks, built a tack room and two stalls, and we rode regularly. I assume some of the bites I got back then triggered something back into action as I was a mess by Thanksgiving and we did not decorate anything but a tree for Christmas.
My laundry baskets and sink overflow regularly and I feel guilty and embarrassed to the point I don't even want my folks coming over (I am a tidy person, but you wouldn't know it right now).
Any help, ie. ideas, recommendations, books to read, websites to visit, naturopathic remedies, etc would be helpful and appreciated greatly. Thank you.
I apologize for typos. I am doing this on a cracked tablet as my laptop's motherboard fried eight months ago. I was saving for a new computer and a decent mattress, but all that went to other necessities and I am starting over again, knowing what gets saved will go to getting me well. One step at a time, right...even if they are small, wobbly ones. Blessings to you.
[ 06-02-2017, 10:45 AM: Message edited by: BlessingFarm ]
Posts: 1 | From VA | Registered: May 2017
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Oh my goodness, you certainly have gone through a lot! What a strong woman you are! Please don't beat yourself up about things - you are ill and need to get well!
Lyme disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD), based on symptoms, medical history, etc. The ELISA test is unreliable and you need to be tested through IGeneX Labs in Palo Alto, CA. They specialize in tick-borne diseases.
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!
I would also recommend your children be checked, because you may have passed Lyme onto them in pregnancy (you did write your second son tested positive and was treated, but not nearly enough!).
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. 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":
Scroll down for financial help, etc., available from several sources.
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%. View on www.lymetap.com
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.
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: 8981 | From Illinois | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Blessing Farm Mom,
So sorry to hear of your problems. Good news is, Lyme can cause all of those problems and when all else has been ruled out, that is typically the diagnosis. Once diagnosed properly, you can be treated.
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 treating Lyme & TBD's in your state (or any state).
There is also a page with support group information, one for alternative medical professionals, educational conferences across the country, labs and their contact information, one for mental health providers, MTHFR and Morgellons providers.
There is also a list of TBD with how to diagnose (testing), a list of symptoms for each disease and treatment info with links to the treatment guidelines.
Hope so much you are feeling better soon! Good luck!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
PS- Here is some prevention info. Might be to your advantage (and the children too) to make a "safe spot" at your place, at the very least. Instructions are at this link.
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