Tuesday, March 31, 2009

My best friend has it too

Just to let you know how prevalent Lymes is, to our surprise I just found out today that my best friend also has Lymes. She was bitten by a tick in December and at that time she described it as black tick with a red hale low around it's rump, I told her that sounded lick the deer tick and told her some of the symptoms to watch out for the next month.

About 2 week later she started with a little nausea, sore throat, sinus problems then fatigue, and she felt as if she had a little cold but it didn't seem to go away. She sounded congested but then it started to hit her jaw, ear, then having slight headaches. She went to the doctors they didn't give it much merit, after watching everything I have gone through and listing to what I have said about the disease she insisted on starting a short coarse of antibiotics - just in case. I then took her to my doctor where she explained her symptoms, they decide to test her through Igenex.

Since so many tests come back with false negative results a short coarse of antibiotics can really help before testing. The antibiotics create a die off which then shows up much better during testing. If you have a negative Lymes test but still have symptoms retesting after a coarse of antibiotics is helpful and may give you different results.

Monday, March 30, 2009

Chronic Lyme Disease does exhist

The Infectious Disease Society’s (IDSA) is trying to say that there is no such thing as Chronic Lyme Disease. This would allow Insurance companies to refuse to pay for treatment of people with Lyme Disease after 30 days.

Please take a Minute and sign this Petition!!
Lyme Disease Association

Tuesday, March 24, 2009

I feel lucky

It's been almost 2 years and I feel so fortunate for whatever movement I have in my face (I feel I am doing pretty darn good) and extremely lucky to be able to blink my eye. The doctors wanted to put a gold weight in my eyelid to help me blink but I wanted to wait. What a struggle to blink - it took allot of conscious thought and focus to get the lid to move and finally after 5 months it did. I am starting to get my smile back, don't drool as much, my eye lashes are going up again, I don't have pain in my face - I feel very lucky. At this point if you met me you might not even know that much is wrong.

When I started feeling a little better

When I started feeling a little better from Bells I had no idea that the underlying problem was Lymes. I tried to resume life but would still be exhausted, Bells doesn't usually cause exhaustion that is when you should have a Lymes test.

Acupuncture for Bells Palsy

You can't really do much for Bells palsy, except get rest, take antiviral meds and steroids but that is still debatable. If you are on these meds if you get a Lymes test it will come back negative and not give you an accurate result. Again 60% of Bells Palsy patents have Lymes and you should only get a test where they do extensive testing 3 weeks of culture not a quickie 3-day test. Once paralyzed you need to try to stimulate the nerves again, my neurologist said I would never get better since I was past the timeline they give for recovery - 3 months. I told her at 3 months I was just starting to get a tiny tiny bit of nerve recovery. Nerve recovery can still happen up to 2 possibly 3 years. To help that along acupuncture or PT electrical stimulation is helpful.

Saturday, March 14, 2009

Taking an antibiotic break

My CD57 numbers have not improved in spite of my feeling better, so I will be off antibiotics for 3-6 weeks then start IV therapy - pic line at the end of April for about 4-6 months.

I have been off of antibiotics for about 4 days and am starting to feel joint pain, muscle pain in the back and night sweats etc. again. What we have been working on the Babesia more than attacking the Lymes but we thought it might have had an effect on it. So actually I have been in a holding pattern.

I have heard of Dr. Gordan but don't know much about him. I have thought about seeing him myself but am still seeing Dr Schweigh http://www.hillparkmedicalcenter.com/practitioners.html#sunjya I believe he is doing everything he can and he has spoken to Joseph J. Burrascano Jr, MD: (the granddaddy who has written the guidelines for Lymes treatment) so I feel he is on top of it. http://www.ilads.org/guidelines.html

Wednesday, March 4, 2009

Do I really have Lymes?

Sometimes I think, maybe they were wrong...maybe I don't have Lymes / Babesia. I did have two negative tests but then I think about my symptoms in the beginning of 2007 brain fog, I felt like I couldn't complete a sentence, wondering if I was having early Alzheimer’s, why were my muscles getting so weak, loosing my hair like a shedding dog. I couldn't multi task all I could do was focus on one think at a time.

I was afraid that I couldn't teach anymore, I didn't remember how-. I didn't have the energy for the long walks on the beach or the field like I use to take, not to mention the funny joint pain, headaches (living on Advil for a couple of weeks before the onset) then came the facial palsy and sheer exhaustion, I could barely get off the couch or out of bed. All I could do was sleep for months I couldn't see very well and barely make to my acupuncturist or neurologist and back home again. So yes I guess I really have it, even with test results showing me hat I do and it is very bad it is still hard to believe. I am in the bigger picture doing really well and much better than many others with higher CD57 counts than I have - hard to figure.

Tuesday, March 3, 2009

Looks like an IV shunt

After being on oral antibiotic for 6 months and numerous CD57 tests I am still have a reading of 19. I thought I was doing much better, had more energy and thought I might be beating this thing. But to my disappointment after my doctors appointment today the reality of having to do an IV shunt is upon me.

I guess it was a good thing that I postponed many of my out of state workshops (still not happy about it). Yesterday I thought -since I was feeling better that maybe I could contact many of the organizations to see if we could still do the workshops this year but then with the test results today everything has changed again, the problem is the unknown and not knowing what to expect.

All I think about is that I am grateful for where I am at in my recovery, I can blink my eye (which is huge- didn’t need a gold weight in my eyelid which was a possibility) I have some movement in my face again, I can finish a sentence, the headaches and muscle and joint pain is minimal, multitask better, not sleep all day, have more energy and hopefully trying to build muscle tone again.