Some of you probably remember me. I found Lymenet in 2003 - looking for help for myself and both of my children.
Well here I am 10 years later - and my kids are 24 & 26!
I have tried writing this post several times, and just not sure where to start...
I had to return to the workforce in 2006 - it was difficult - even though I loved my job. (cake decorating)
I worked 4 days a week - and crashed the other 3...
I lost my job October 2012 - due to the fact that the owners of the business sold their whole store to another company.
Everyone who worked for them became unexpectedly unemployed (over 100 of us)
Anyway - my symptoms have been getting worse the last couple of years...
and I was trying to ignore them while I was working...silly me.
We also have lost our LLMD, because he is not practicing at the moment...that's another story...
The reason for my post now is this...
I have been having short term memory problems, which is getting worse,
balance issues, dizziness, neck pain, joint pain, fatigue, vision has gotten much worse,
left-sided weakness, numbness, an MRI of my brain which showed some white lesions, And I just do not feel "like me" anymore...
I had an EEG of my brain in 2008 that was abnormal after having had the worst headache of my life
which left me disoriented, and it affected my thought process. This is what affected my left side of my body - as well as having problems with speaking (not being able to find the right words)
Just recently, I saw a neurologist and he ordered another EEG, along with tons of blood work.
He knows I was diagnosed with Lyme years ago, and said my symptoms may all be damage that the lyme has done to my brain.
I also have an appointment to have something called a neuro-psychological test to find out what it causing the short term memory loss.
This is a 4 hour test. I have an appointment in February to get the results of my EEG as well as the blood tests. He re-tested for Lyme.
My family doc diagnosed me with Fibromyalgia...but I know/believe it is lyme. I also have low bone density, and vitamin D deficiency and Raynaud's
I have a whole pile of other symptoms...but you guys all know how that goes with Lyme
I guess I'm making a long story even longer...
I'm trying to find out if any of you have had success with a "natural" (herbs, vitamins, etc.) protocol that helps?
In the past the times that I felt the best - and my symptoms were much more manageable, was when I was on antibiotics...
but I don't see that as an option right now - but wish it was...
So - can any of you share what may have helped you?
An update on my children - for those of you who may remember us - both of my children have congenital Lyme.
My daughter (the 26 yr. old) is "holding" a job - but has many health issues.
The lyme has messed with her heart and she also has lots of issues with her digestion/severe IBS, and lots of joint/back pain, insomnia, as well as fatigue, etc.
My son (24) is on disability due to the neurological disorder that he was born with. It affects his movement.
He has a tentative diagnosis of Paroxysmal Nonkinesigenic Choreoathetosis / Dyskinesia - but they are not 100% sure
He also has heart issues and a lot of pain/fatigue from the lyme. He was just recently diagnosed with bi-polar disorder.
He is unable to sleep for days, and then he crashes, and sleeps for up to 20+ hours straight.
Sorry for the long post, and Thanks for "listening"
ArtnSoul
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
PLEASE check out the PARASITE WARRIORS SUPPORT THREAD The co-infection of parasites/worms is now being recognized by ILADS as the number 1 co-infection of Lyme disease. left untreated, it is pretty hard to get well. Google parasite symptoms.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
If you think it is lyme you can get pet meds if you feel comfortable using them. I have in the past.
I say "if you think it is lyme" because I'm now finding that other things have been causing those symptoms for me.
One being hypothyroidism. Others being adrenal insufficiency and deficiency of sex hormones. Just so you know, most regular docs will follow the "normal" lab values and tell you all's well.
Welcome back but sorry you need to be here.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
I am so sorry to hear about all of the struggles you are going through.
One of my best firend's who lives in Texas was seeing a LLMD who was a 5 or 6. Hour drive for her.
She is now working with a doctor closer to her for some things but getting most of her meds through her vet. I "think" you can buy it from a feed/pet store.
Maybe they will have Ceftin, and some of the other meds you used when you were being treated. It's sad and crazy that our animals can get the help they need easier than we can.
Do you remember or have written down what meds worked for you? And you can start the salt/c protocol very slowly and see how that goes. It has worked for a lot of people.
Hugs to you and your children! Posts: 167 | From Southeast Tennessee/Chattanooga/Atlanta | Registered: Oct 2012
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posted
ArtnSoul, I stumbled on this site this past fall.
Diagnosed with chronic Lyme in Aug. 2012.
Abx helped some, but horrible heroes, and now, parasites.
Read your post, and when I got to your most current symptoms, I actually scrolled back up thinking I was reading something I'd posted.
We share the brain fog, reynaud's, word difficulties, fibromyalgia diagnosis, osteoporosis, etc. I had that 4 hr test, too, because I feared early onset Alzheimer's.
Things were "normal for age" and nothing showed up. Mention a test, and I have had it. Most are normal, questionable (and sometimes then repeated), or inconclusive.
I have some white matter lesions, too, but neuro says most people after 50 have a few.
Ideas, please consider parasites as co-infections. Horrifying, but quite possible. They have hit me so hard that I often have to use a cane, and it is not safe for me to drive right now due to slow responses and getting lost.
Next, ask your doc for sample abx, if that helped last time. My PCP has kindly given me samples at times when he has them.
Read up on some of the "zappers" for parasites, the salt/c, and the combo of herbals such as wormwood, oil of oregano, wormwood, etc.
I've also tried to be more mindful of my body and what I eat now that food isn't appealing. I've found that buttermilk, Greek yogurt with fresh red raspberries, fresh pineapple, and tart cherry juice help me. (Just me, but maybe they can also help someone else.).
Since I have had to leave my classroom of two decades because of what ravages are going through me, I've found that days are still unpredictable. Rest isn't always restful, but I do sit and watch mindless TV at times.
Hang in there. Be gentle with yourself while being tough against the "bugs" within.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
have you tried cowden? it's a slow but steady journal.
others have great ideas. i hope you are able to find something that works for you and your family.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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