Got the word the other day that I am done with my treatment and that I am in remission.
I have been symptom free for almost a year, so I have the okay to resume my life without antibiotics. I am still supporting my immune system with many of the supplements I was taking. I just had another full panel test and at least my body is now starting to rec zone this as a problem and has started to kick in to fight. This doesn't mean I can't get it again or have another bout with it but it does mean I have fought a good war and am on the winning side.
I am trying to keep my stress level down, meaning that some things that use to bother me are really not that important and prioritize what really is. It's funny how I can now see things that when people want to engage in a trivial issues how unimportant it is.
I am grateful for the opportunity to have learned so much that I have been able to share and help others. I believe attitude is everything. It is really tough to keep your head up and keep on fighting when you think it will never end, and it is so very sad when many of your loved ones really do not have a clue of what you are going though and think that all of your doctor appointments are unnecessary and a waste of time and money. But they don't have the information or education on this subject and there is no easy answer or quick fix. If you only treat the symptoms and not the problem it will continue to be an issue.
In any case I'm in Remission !!!
Hi and congratulations! I was searching for information to help me figure out why my test was negative and found your blog. I have every reason to know I have Lyme (including the tick removal and rash 21 months ago but never treated - and current full neuro symptoms) yet my local small hospital says my test is negative. I'll look through your information. Thanks.
ReplyDeleteGood for you in Pursuing this. I had three false negative tests all the docs said that Lyme was not in California, they were all wrong. They did not pay any attention to me, I requested my blood to go to a particular lab, they sent it out to the easies lab for a quickie test, over half of those tests will give a false negative.
ReplyDeleteyou will have to be your own advocate and do not rely on what your local hospital says.
You will want to get a test through IGENEX I don't know any other good Lyme Lab off hand. I had a full Panel # 6040, they may call it a # 6050 now (not sure) even if that comes back negative you might want to consider a dose of antibiotics and then do a urine test to see if the antibiotics have created a die off reaction.(that means that it is easier for them to see it) Look at my IGENEX link on the right and also look at my Lyme Symptoms link.
I thought I was crazy pursuing the Lyme testing due to SO Many obstacles. Let me know if I can help with anything else. Wishing you all the best.You can also find me on FB
It give me such joy to read that you have been feeling well!
ReplyDeleteYou give me hope...I'm just beginning my battle with chronic lymes and it sucks!
ReplyDeleteDearest Birgit,
ReplyDeleteI found this information accidently on your site because I am registered for the Medincino Spring Flowers workshop. I am a teacher and I am ashamed to go back to my classes in the near future with Bells Palsy in full bloom. I was never beautiful but this is an ugly distortion.
You are an inspiration for all of us with these conditions. I just started the battle with Bells Palsy this week and find it difficult to believe Prednisone will be a quick fix. The added information about Lyme is not exactly good news and I admit I'm scared! I knew it was in Texas when I lived there. Now I am in Phoenix and have been more concerned with catching Valley Fever!
Keep up the good work and I wish you a full recovery and an exemplary career. Your paintings are lovely. Thanks again! Mardelle
Hi Mardelle, I'm looking forward to meeting you.
ReplyDeleteThe GOOD news is the prognosis for individuals with Bell's palsy is generally very good. The extent of nerve damage determines the extent of recovery. Improvement is gradual and recovery times vary. With or without treatment, most individuals begin to get better within 2 weeks to 6 months. For some, however, the symptoms may last longer. In a few cases, like mine, the symptoms may never completely disappear.
Steroids such as the steroid prednisone -- used to reduce inflammation and swelling --are effective in treating Bell's palsy. This is a mixed blessing some doctors don't think it helps (like mine) and during that the damage continues. If you suspect Lyme and are on Steroids most likely and testing will give a false negative result.
Here are some important questions,
Do you feel exhausted?
Can you think clearly?
Can you multly task?
if your answer is no then you may Lyme or a co-infection and you should pursue this and see a well educated Lyme doctor and get onto antibiotics.
As far as going out in public, my thought was this is not my problem I am not only my face. if a person could not handle seeing me it is really their problem. My concern was to protect my eye and live my life. I did think of wearing an eye patch but never did.
ReplyDeleteWhen I saw a child and the look on their face my response was do I look funny or scary to you? My response would be. I thought so, and told them that I was very, very sick but am working on getting better.
I know of someone that went into hiding and covered all of her mirrors over having a scar on her face and I thought is that all you are?
There are people with other much worse problems and other horrendous diseases and I am lucky to be where I am at and I will work on getting better.
Now one very important note…is to start acupuncture on your face with “electrical stimulation” I started acupuncture 15 days after the onset because I simply could not function before that, I couldn’t see, think or drive etc. but that was due to the Lyme which I was unaware of.
ReplyDeleteOnce I added the electrical stimulation about 3 months later that is when I first started to see the slightest improvement. I wish I added the stimulation sooner but didn’t know about it and at that point I had to guide my doctors every step of the way.
Good morning Birgit,
ReplyDeleteThank you so much for your concerned and informative responses! I wasn't sure I could publish a response.
Yes I do have problems you describe and that is frustrating to someone who always has several things going at the same time! The added vexation is being unable to speak or eat properly. My tongue isn't able to function normally either. That is a bummer for someone who loves to do both!
My eye is a constant problem but I try to bear in mind my son. He lost one eye to cancer a few years ago and never stopped working. He is a knifemaker with extraordinary artistic skill. Lack of depth perception could have stopped him cold as the steel he creates.
I asked my daughter about the possibility of Lyme infection in the PHX valley and she seriously doubts that is possible. She is a Vet and well informed. However, she did volunteer an agreement with the suggestion that I start the electrical stimulation treatments. I will make that connection through the hospital therapist that gave me her card first thing Monday morning. The therapist mentioned in conversation that she would love to be able to paint! Wasn't that a nice thing to say to me?
I believe that working to get better should include painting soon. When I can hold a brush with out splashing the paint I will certainly begin again. The Prednisone has given me the shakes instead of energy. A friend with MS tells me that she doesn't shake only when she paints. That is also very encouraging. In the meantime I am putting together a new palette for your workshop. Something to look forward to in the not too distant future. Life goes on with new challenges to meet that were beyond my expectations. Thank you so much for your interest and concerned responses. The new journey has begun. Back to the drawing board!
Hi Mardelle, I also have tried elec stim with a physical therapist, the difference is that theirs was pretty intense and my face stared to spam into a jokers smile, so I would balance your stim with gentle and intense. I believe if I had the acupuncture with the electric stim in the beginning that would have helped enormously.
ReplyDeleteI don’t think too much of Lyme in AZ but if there are ticks in your area there is the posssibilty of Lyme.
Did you know that I am going to be in Sedona in March?
Dearest Birgit I was thrilled to hear that you would be so close in March! I will try to make a special trip to at least say, "Hello and thank you!" in person while you are so near. My cousin lives in SF and is one of your biggest fans. She arranged the workshop for us in Mendocino just recently and I am very excited about that. She came to Sedona for a workshop with Brian Davis at my suggestion last year. I would love to be able to afford both classes. My doctors will get their share of my budget first this time.
ReplyDeleteI will definitely seek out an acupuncture therapist as my first priority. I have another good friend that is a physical therapist that will probably provide additional help with accupressure. He has really helped me when I have had kidney stones. I am only five days into this battle and so I hope I have a head start on recovery. Thank you so much for your continued interest. I am excited!
This site by Dr Jack Kruse has some excellent info on Lyme. http://jackkruse.com/hey-lyme-disease-meet-leptin/#comments
ReplyDeleteHi Mardelle - I really think you will probably be fine, most people are. I look forward to seeing you and your cousin in Mendocino, we will have a GREAT time.
ReplyDelete