Thursday, July 23, 2009

Hummingbird Moth and Lyme Disease

In June I tested positive for Lyme disease...took doxycyclene for 6 wks. and began to feel better than I had since I started with serious pain issues back in Oct. 2007! A week after being off the antibiotic, my pain issues worsened! Now I'm on 8 more wks. of treatment. I now believe the major pain that suddenly took over my joints, muscles and nerves back in the fall of '07 was due to a tick bite!

At that time, I had a red bump on my inner thigh that looked infected. I popped it and applied neosporin to it. I was really sick when I went to Las Vegas for our 30th anniversary in Dec. '07. That was when I took pain meds, including oxycodone, because I could get no relief with other treatments. From then on I dealt with chronic pain, had lots of tests (except for Lyme!), cortisone injections, epidurals, pain management treatments, physical therapy, etc. I even went to the doctor and had an MRSA swab done...thinking perhaps I might have contracted that-but no MRSA.

This spring I had another 'bump' but this time on my neck. I knew it was an infected tick bite because I pulled the tick out myself. I went to the doctor because it was getting worse, even with my own treatment...and that's when the Lyme test came back positive. Usually, after a tick bite, a Lyme test will only be positive after several weeks have gone by. Since mine was positive within a few days of the bite, it was concluded that I'd had it for quite some time. Now, I believe I'm living with chronic Lyme and it's going to be difficult to eradicate. Even if I 'had' had a Lyme test, months after my last tick bite, it may have been negative, because just as it takes weeks to show up as positive, it also 'stops' showing up positive after a few months have passed! Had the doctor done a Lyme test after my first infected bite (which I didn't know was a bite), I might not have gone through, and am now living with, all of these problems!

I think my son may have it as well. He has been exhibiting all of the symptoms and even though his blood tests negative for Lyme, after doing research I've concluded he may have it. I have taken ticks off of him this summer. We live in an area that is very 'woodsy' and I'm always outside in my garden. Plus, we have 2 dogs that might bring them in, even though they are on a tick/flea preventative. This summer, not only did I have an 'infected' bite on my neck, but I also took off 2 pin-head sized ticks from my groin area, and 1 from behind my knee! I might not have seen them had I not 'specifically' been looking for them, because they are so small they aren't visible unless you check extremely closely.

Lyme also is known to be the source of cognitive and emotional changes, memory and concentration, and so many other problems! No wonder I thought I was losing my mind and becoming senile! My son had 'sudden' onset of these changes this spring. His grades went from A's and B's to D's and F's! He's in the gifted program and suddenly couldn't think straight, concentrate or remember things! He developed knee pain for no apparent reason! He exhibited sudden mood swings and bouts of anger, depression. It's easy to diagnose these kinds of issues as bipolar or ADD or other psychological disorders. But he's also been running a fever between 100 and 101 on and off since that time, has frequent headaches, ongoing rashes, and many other symptoms that doctors cannot explain (!) -- all of which lead me to conclude that the cause of it all may beLyme disease! In June he was treated for a sinus infection with antibiotics and he started to feel good again! Not long after he was off the meds, he had recurring symptoms! He tested negative for Lyme after I had him checked at the time I was diagnosed. But it's not unusual to test negative after a period of time goes by. I wish that my son could at least be on an antibiotic, but doctors hesitate to do that unless they believe there is a bacterial illness. They think my son has something 'viral'!

I have found some Lyme-literate doctors and have appointments for us in September. It can be a long road trying to eradicate chronic Lyme. I am most concerned about my son, who is only 12. Many doctors don't believe it even exists. Yet, I don't think our medical system is up to par on many illnesses and treatments. Just like insurance companies and pharmaceutical companies, I think our medical community is screwed up. A lot of it is financially driven as well as politically.

We're off to Maine for about 10 days...in the woods, no less! I don't know if it even matters whether we get bitten by more ticks, since we already have the illness! But I am pretty vigilant now about applying bug spray and trying to dress appropriately to minimize the possibility of being bitten. Being on doxycyclene, my skin has become extremely sun-sensitive as well...so I have to double up on my sunscreen applications and even wear longer sleeved shirts, and cover my feet because the slightest bit of sun has my toes burning and very painful!

Joanne (Joanne's Cottage Garden) is onto something, folks! Don't take this lightly or with a grain-of-salt! It's very real, goes undetected, messes up lives, and is possibly at the root of many of the illnesses which we mistake as something else. Thanks for letting me vent! Since this is a gardening blog, I believe the topic is actually very relevent and might even signal to many readers the importance of taking your symptoms seriously. Do you know that I started blogging and named my blog Thanks For 2 Day because I was 'trying' to hang on to the belief that I could keep 'hanging on', back in Nov. 2007? I couldn't understand why I suddenly started having so much pain and that it wasn't able to stop! I thought if I'd just focus on living each day and finding something to be thankful for, I could keep going. Of course, that's a good philosophy all of us would be wise to live by, but the actual beginning of my problems were what triggered me to start my blog and name it as I did.

~~~~~

Okay, so what's this post have to do with Hummingbird Moths?



Not a thing! I just wanted to show you a photo of one that I just captured on my phlox! You can click the photo to enlarge it! It's called a Hummingbird Clearwing.

~~~~~~

For lots of relevant information on Lyme disease, visit Joanne's blog. She has so many links in her sidebar that you'll be stunned with how much knowledge is out there, but how our medical community doesn't want to recognize it!

Happy gardening; and Lyme-free living!

--I am thankful for people willing to search for answers and not simply stick with the status quo.

66 comments:

  1. omg jan...that is horrible, absolutely horrible. i now will be more alert when i am out and about in the woods around here. hubby keeps telling me to watch out and of course i don't listen but...i do wear pants and shoes and socks when i am out just in case.
    i surely hope you can find someone who will listen to you and will treat your son as he should be treated.
    i will keep you in my thoughts.
    many hugs

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  2. Vent and rant away!! Lyme disease is serious business!! You should post that multiple times a year. Take it with you to the doctor's office. etc. etc. sound the bully pulpit. Hope your son's appointment is fruitful in September, sorry he has to wait that long.
    On a happier note, have fun in Maine.

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  3. My gr-son has Lyme Disease also. Not much fun ... & the later affects are not known either, down the road. I hope you feel better quickly. There is a really good Dr. in Baltimore but I forgot his name.

    Take good care ~ TTFN ~ Marydon

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  4. I know so many people that have LD. I keep up with Joanne. I am so glad that you got tested and found out sooner than later. So many people go years without EVER knowing what is wrong with them. I think the medical companies need to test deer, dogs, cows, etc., to see what makes them immune to it. Maybe they can learn from that, and treat humans. I wish you the best! Keep your head up! The medical field so far advanced here to treat LD than in other countries. I feel certain you will have a positive outcome

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  5. Jan, how relieved you must be to finally have a diagnosis. Don't give up on your treatments, but I'm sure I don't need to tell you that, the whole theme of you blog tells me that. Lyme isn't as common here as in your area. I've read about local people who have had a terrible time getting diagnosed because doctors around here don't believe that we have it.

    Thanks for the beautiful photos of the hummingbird moth. I've only ever seen one and it moved so fast that it was almost impossible to photograph. Nice work!

    Hoping the best for you and your son.

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  6. Jan You and I have been in touch and so what you are saying in your post was not a surprise to me, I am just so thankful to read how quickly you have got up to speed on the politics of lyme.
    I do hope your doctor is open minded because whatever an illness a doctor should treat according to your response and the same goes for your son. If antibiotics improved his condition then the Doctor should be taking serious note of that. You mention him having sinus problems which frequently go hand in hand with Lyme. Sinus infection are notoriously difficult to eradicate and difficult to test for and it may be possible if your son still has sinus problems to get him started back on antibiotics that way.

    I would recomend you get the book Cure Unknown by Pam Weintraube. It is available through Amazon and not expensive. You can read some of her articles through my web links. It is an excellent way to get to understand what has happened that results in the problems over diagnosis and treatment today. I gave a copy to my doctor and although she took a long time to read it she has been very open minded and supportive. After discussing Judith Miklossy links to Alzheimer's she said this is big! I said yes but it could be years before it filtered down to main stream medicine. I also gave a copy to my Member of Parliament who has asked questions in Parliament and keen to raise awareness.

    Many people in USA are aware of Lyme disease but many people think they know about it. They would be staggered with what is going on and that CDC now acknowledge that it is of epidemic proportions.

    Let me know how you get on with LLMD make sure it is through ILADS and not IDSA.

    It is a long road to recovery with many ups and downs but often children respond well, the sooner he gets treated the better.

    Thank you for doing this post and helping to raise awareness of what is going on.

    You are lucky you now know what is making you sick and can start getting better, sadly thousands of people are not adequately tested or assessed to see if their chronic illness could be Lyme Disease.

    Hugs Joanne

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  7. Hi Jan,
    What a terrible time you have had with this Lyme disease. I had no idea how bad it could be. Thanks for the heads up.
    Rosey

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  8. This sounds horrible! I have a good friend who developed fibromyalgia after having Lyme disease that was initially misdiagnosed. Maybe that possibility is something you should look into.

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  9. Jan you poor thing. I guess I was very ignorant as to all of the symptoms of Lyme disease and that it was so hard to get rid of.It must be very frustrating and hard to cope with constant pain. I have Fibromyalgia and want to scream sometimes when someone touches me but yours in the joints must be excruciating. I wonder what is so different now than when I was a child.We always had ticks but it did not seem to cause any sicknesses. I hope you and your son find some answers from the new doctors.Hang in there girl.
    Your hummingbird moth is so pretty. The look so strange somehow that they are cute.
    Is your phlox a "Laura Purple'? It looks like the two I just bought today because they smelled so heavenly I could not resist ;-)

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  10. Hi Jan~~ I don't have any words. This is just shocking.

    I'm so glad you have a NAME for what has been plaguing you. Not knowing, just thinking maybe you're going crazy or senile, is enough to make you go crazy or senile. Even though there is still that proverbial long road ahead, at least now there are streetlights. Thank you for your candor. Only God knows how many lives you may affect with this post.

    Please keep us posted!

    Grace

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  11. I'm so grateful that you've shared your story with us. Much to think about here, and the moth pics are magnificent. I wish you magic and wonder, and the ability to hear the songs beneath the noise while you are away. Namasté, Jan.

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  12. This post is definitely relevant to everyone who is ever outside. So often we overlook the innoculous tick bite only to have it rear its ugly head later in the form of some terrible disease. I think this is a bigger problem than what we realize and thanks for the information. I'm thinking I need to go get tested now too. Have fun in Maine. it is such a lovely state in the summer but do take lots of Off.

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  13. It sounds horrific Jan...I hope that your son's health improves. I can't imagine how scary it must be for your family. Take care and good luck with your own treatment.

    Fantastic photos, btw!

    gail

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  14. Your Hummingbird Moth collage is just beautiful.

    I am so sorry you and your son is having so much trouble. Lyme Disease is difficult and a horrible disease to have to deal with. I too know someone who developed fibromyalgia after contracting Lyme's.

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  15. Jan, I knew you had been diagnosed with Lyme's but had no idea of what you have gone through for the last couple of years.You have my prayers. Living with chronic pain is life altering-I have had fibromyalgia for 10 years. Fortunately a year and a half ago I found Lyrica and it has been a miricle drug for me. I hope you and your son can find some help from the more knowledgeable Drs.

    If one good thing has come out of this, it is hat you started blogging. :) Your approach to life has been an inspiration to me and others.

    Rant anytime, that's what we are here for-and know we are thinking of you and sending good vibes!

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  16. Oh Jan, that sounds dreadful! But hang in there, I do think they are learning more and more about it. Amy Tan's (the author) autobiography has a lot of info, she had it too.

    Best wishes...

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  17. Jan, how awful that it has taken you this long to be diagnosed; thank goodness you're able to receive treatment at last and hopefully, some relief from your symptoms. I wish the same thing for your son; it sounds like he could very well have the same thing. Lyme is nothing to fool around with, for sure. Take care and good luck with this.

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  18. I have learned so much about Lyme disease through Joanne. I really did not know that much about it and I was in the medical field for many years. Doctors are afraid to prescribe antibiotics now, and it's too bad that with all the research that more aren't open to antibiotic therapy for Lyme disease. I really hope that your son and you can get the antibiotic treatment that sounds so effective.
    Have a relaxing trip to Maine and that moth is really neat, great pictures!

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  19. Hi Jan~
    Sending healing thoughts your way. I hope and pray that you and your soon will be feeling better some day soon.
    Glad to hear the Lyme disease hasn't kept you out of the garden. Enjoy your trip to Maine :)
    ~Karrita

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  20. I can't imagine how you must be feeling right now. So much frustration and relief at the same time. Hope you and your son are healed soon!

    Love the pic of the adorable moth! :)

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  21. Oh vent my dear, try and get it off your chest, things like this eat you up. I am so sorry to hear about the disease not only badly affecting you but your son now too. I sincerely hope that somewhere out there is a dr who will take the time to listen and who actually understands something of what you are having to deal with. My thoughts are with you, roll on September!
    The moth photos are fabulous by the way and who cares if the 2 stories are unrelated - it's YOUR blog, you make the rules here. x

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  22. Hi Jan
    Just been having a quick look through your comments.
    I was diagnosed with Fibromyalgia at one point. Fibromyalgia is not really a diagnosis ie it is just a description of certain symptoms often because doctors don't know the cause. In fact as you will see if you read my post
    http://joanne-orangecottages.blogspot.com/2009/07/lime-for-lyme.html

    The controversay is partly about if you have lingering symptoms after having a short course of treatment for lyme Disease. I was treated on long term antibiotics because when the antibiotics were stopped the symptoms returned and when I resumed the antibiotics the symptoms improved. It is not rocket science to consider that ongoing symptoms can be an going infection. Many people with Fibromyalgia, especially after known tick bite may well in fact be still suffering an ongoing lyme infection and would be well advised to read what literature is available and seek medical advice. Yes certain pain killers do mask the effects but do not cure and if left untreated the infection can progress to horrific symptoms.
    Thankfully I am now nearly 100% after long term antibiotics after an illness of 6 1/2 years.

    On my post Dr Jemsek says of the top 20 illnesses in USA they only know the cause of 2 H. Pylori which causes stomach ulcers found to be a bacterial infection ( how many people had operations to remove stomach ulcers when in fact simple antibiotuics were the answer) the other is HIV. I think that says it all.

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  23. Hi all...I appreciate all of your supportive comments:-) I truly do not intend to 'whine' here, but it was good to write 'some' of this out, & it might really signal to some others to look into their symptoms further.

    *RE: Fibromyalgia. I, too, have been diagnosed with fibromyalgia. In fact, I have been taking Lyrica since the spring of 2008 and it has been a life-saver. I noticed several people on the gardening blogs are on that, as well. I'm not saying everyone on Lyrica, or everyone with fibro. really has Lyme. Not at all! However, BECAUSE I truly DID get the Lyme diagnosis, much of my story just makes a lot of sense to me...especially in light of the fact that we know specifically when I began to have this ongoing pain...October of 2007. It was like I woke up one day and was never the same since! (I'm functioning well, believe me...but I wake up in misery, wake up in the night, and just keep hangin' on to that Lyrica!). It is a miraculous drug, I must say.

    So, whether I 'really' have fibromyalgia, or whether it's all just Lyme symptoms, or whether the Lyme has 'turned into' fibromyalgia, I haven't a clue! Joanne says fibro. isn't really a disease in itself, its a bunch of 'symptoms'. Some would agree with this, others would not. I really DO NOT KNOW. No one does! That's the problem with these issues.

    What I AM fairly sure of is this: If I'd been tested a while back, I probably would have been positive for Lyme then. That's not a certainty though, because it doesn't always show up! FRUSTRATING!

    I really do love all of your comments, and thanks SO MUCH for taking the time;-)

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  24. So sorry to read about what you and your family are going through, Jan.

    Your blog is an inspiration to us all and I am sending sunny thoughts that you will come through this ordeal soon.

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  25. Thanks for all the info. As much as medicine has progressed, I think the fact that doctors only have very little time to spend with a patient is what causes misdiagnoses! I hope you will feel better after this second round on the meds. Also, I love your new header collage. Bright! Cheery! Colorful!

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  26. I am so glad you found a specialist who will take this all a little mroe seriously. I have a family member that got it and it landed her in ICU for 2 weeks, even then they told her it was all in her head, Lymes did not do things like that. Humph!

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  27. Heartfelt healing wishes and prayers, Jan, for both you and your son. For many reasons, you are an inspiration to many.

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  28. Hi Jan,
    I''m sorry the symptoms have come back after you were starting to feel better. I'm glad you and your son are going to see someone who has more experience with treating those with lyme disease.

    I agree with you about the medical "profession". People hold doctors in too high a regard. They are people, and can make mistakes, just like anyone else. The whole industry, from insurance to hospitals, I feel, have money as the bottom line, and are at least as much interest in profits than people getting well. I have osteoporosis, and all they want to do for me is put me on meds. They don't even know yet if the meds actually prevent fractures.

    Please forgive me, anyone reading this who is in the medical profession. I'm sure there are caring people out there. The PA I see is thorough, and caring, but I think he is under pressure to prescribe a certain number of medications, and to promote tests and screenings. I have health insurance, but can't afford the huge co-pay of a colonoscopy, which he keeps trying to get me to get.

    Oh, I'm sorry for carrying on. Thanks for the update, and we do need to notice and be thankful for our blessings. I hope you and your son feel better soon.

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  29. Jan, So sorry to hear that both you and your son are having this trouble. Thank you for giving us all information on this. I now live in a wooded area with lots of deer, as do my children and grandchildren. I think it would be a good idea for us all to take extra care and also, learn more about this disease.
    Hope you have a good time on your trip and both feel better soon.
    Take care,
    Linda

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  30. Hi Jan
    I am a Lyme friend of Joanne's living in Canada
    So sorry to hear that you and probably your son have Lyme disease but very happy to hear you found a doctor.
    Vent away . . . I find it to be a great way of letting off steam especialy after talking to someone who WILL not believe Lyme exists.
    I think that if we, the folks at the grass roots level, keep raising awareness by what ever means we can, blogs, emails to everybody,letters in the news papers then sooner or later we might prevent one more person from getting infected because they will know what to look for!!
    I now know I got infected in Germany in May 2007, but did not know for 6 months what the wiered rash was and now of course the rest is history.
    Joanne is a dear isn't she
    so positive and such an incredible garden.
    Take care
    Alison

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  31. Oh no! you poor thing!!! I hope you feel better soon! I have heard of several people getting it including my cousin. she had a battle but is doing great now. Hang in there and always seek out the best people for the job.

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  32. Dearest Jan..I've been away for a few days so just now making the rounds on my links. I've always loved the name of your blog and understood your reason for it. Aside from dealing with your own health issues, I know you must be so frustrated when having to worry about your son and the lack of help he's getting from the drs. Being helpless is the worst feeling when your children are in pain. I'm sorry for all you've had to go through but the bright side is you have a confirmed diagnosis and hopefully on the road for a full mend. Try to enjoy your vacation..we'll be thinking of you and yours.
    Lynn

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  33. Oh Jan so sorry to hear this. Thanks for posting the information on lyme disease. It's so important to get the word out. The pictures are amazing of the hummingbird moth! -Jackie

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  34. Jan, I'm so sorry to hear this about you and your son. But, thank you very much for sharing the information with us and enlightening me on Lyme disease. I will certainly take it seriously now. To be frank with you, I have never heard of it before except from Joanne's blog and your goodself. I wish you well and may you and your family have good luck always. I really don't know what else to say, being so ignorant that I am.

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  35. Jan,

    Love the pictures of the moth.

    Get whatever treatment you can for the Lyme disease - my sister contracted it, and shortly thereafter developed MS. While the doctors say it is not possible we all believe that the Lyme compromised her immune system.

    As a fellow rural gardener, I'm always picking off ticks. It's unavoidable no matter how careful you are.

    GOOD LUCK and get the best treatment you can. God bless and feel better.

    Jeanne, Seven Oaks

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  36. Huh...wow...I work outdoors and after a plane ride a few months ago had some prolonged dizziness.
    I wanted them to test me for Lymes as part of a series of tests. The doctor refused.
    I recovered from dizziness, but was intrigued that they would not test me for Lymes as I WORK outdoors in peoples gardens and fields everyday...you would think they would test first for that...I don't have a lot of faith in doctors or health care.
    GartenGrl at Planning Plants to Plant

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  37. Jan, I'm sorry you have to deal with this, but glad you've found an answer to your health challenges. It's no fun living with any sort of chronic disease, and I hope things improve with the new medical help. Have a good rest while you're away, and the hummingbird moth is awesome. xxx jodi

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  38. Jan sending prayers for a pain-free life VERY sooner than soon!
    BAD ticks! NAUGHTY ticks! I am thinking those little guinea hens are looking better and better!

    >^,,^<

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  39. Jan,

    Didn't realize all the problems you could have with Lyme disease.
    I've read some other bloggers have said they have it also.
    You helped explain what's going on with a friend of mine who's been acting strangly.
    We explain so many things away...saying were just getting old...I can see that's not always the case.
    And it's painful? I have to do some reading...I'm ignorant.

    All the best wishes and hugs,
    Patsi

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  40. Gee, that is so scary. Thanks for all the information on it. Be careful in Maine. I was just there and got bitten by either the largest mosquitos in the world or black flies. They left a scar. Good luck with everything.

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  41. Hi Jan - I am sorry you have been through so much with this, and now your son too! :( So much about the body that we don't seem to be able to understand or figure out how to deal with, doctors included. I hope you get some relief but longterm antibiotic use can have its problems too, as I'm sure you know. Do you take probiotics at the same time? Not sure what the studies show but many practitioners recommend this now, helps keep your "good bacteria" hanging in there instead of being killed off by the drugs. I will continue to send good healing thoughts and now to your son as well. Good luck kicking this dang thing!! PS That moth is really something. Amazing shots!

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  42. Jan, I almost missed this post, and I am so glad I didn't. I didn't realize just how scary Lyme disease could be; you've inspired me to be more vigilant about covering up and using repellant when I'm outside, especially in the evenings. I agree the medical establishment doesn't know everything, especially when a condition doesn't present a clear diagnosis--believe me, I can totally relate to your frustration. I hope that your treatments help you to feel better, but I especially hope that the doctors take your son's symptoms seriously and get him the meds he needs. I think you're smart to find other doctors more familiar with Lyme. I wish you all the best, Jan, and will be thinking of you.

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  43. Hi Jan,
    I always appreciate your positive view and attitude for everything about life. I knew you had health issues but I'm so sorry to hear it is Lyme Disease. There are a couple of people in my extended family who have been diagnosed with this (sometimes crippling) disease. Sincerest prayers and good wishes for you and your son to find the best and most accurate remedy!

    Love those Clearwings... they are so fun to watch but I can tell you I have not been able to get a good photograph. Yours are fabulous!
    Meems @ Hoe and Shovel

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  44. Here's wishing for better health for you and your son.

    Hugs!

    Michelle

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  45. Jan - good for you for finding other doctors who know more about LD. Several years ago, we lived near a medical college and knew many medical students. Not all of them were brilliant and diligent. It made me realize that there are plenty of doctors out there who barely scraped by in medical school and residency, and they're mixed in with the good ones. So if you don't get a good one at first, then second or third opinions can be great. Thank goodness we live in a time where antibiotics and other treatments are available, even if doctors don't know all the ins and outs of the disease yet. Best wishes for you and your son.

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  46. Hi Jan, I'm so glad you've finally got this figured out! But I'm also sorry you've had to endure this for so long. Prayers for you and your son! I was nervous about a tick this Spring, and the Doctor prescribe "Z-Pack" (the concentrated 5-day antibiotic that lasts 10 days) and said if it were a deer tick with Lyme, this would take care of it. Whew! Blessings.

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  47. For 20 years, the govt. and medical folks said we didn't have Lyme here, even though I knew at least three people with serious cases.

    You may already have looked into these possibilities, but my friends were helped by magnetic mattresses, acupuncture, and neuroplasticity programs. My thoughts are with you; living with chronic pain just sucks.

    But I can see you can still appreciate what's around you! The hummingbird moth photos were brilliant - made me really see how they got their name.

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  48. Wow Jan,

    I'm late reading your post but I'm sorry to hear about Lyme disease. We're paranoid about it here as ticks seem very numerous. They've died back this summer but we found quite a few in spring. I think I read somewhere that a red ring begins to appear after a week or two after the bite if it's Lyme disease. Also the deer ticks, the really small ones, carry Lyme disease whereas the dog ticks carry Rocky Mountain Spotted Fever. I hope both you and your son find the treatment to get you fixed up!

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  49. So sorry to hear of your battle with Lyme.. Wishing you all the best and hope that you and your son are doing better soon~

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  50. Hi Jan, I'm terrible sorry to hear what you are going through. I hope you will get well soon. It is a horrible disease and I have heard similar stories about that people does get the Lyme disease test straight away...
    My thoughts are with you my friend, greatings and blessings/ Tyra

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  51. That is terrible news. I hope everything goes well for you - I will be thinking of you. Be careful in Maine!

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  52. FYI: The National Library of Medicine provides lots of links to reputable information about Lyme Disease. If you think you have it, read up before heading to a potentially skeptical doctor.

    http://www.nlm.nih.gov/medlineplus/lymedisease.html

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  53. You know, this all drives me NUTS. Lyme is not a 'new' disease - and I can't believe that you didn't encounter a health care professional that didn't suggest a lyme test early on. It's an easy test - and you had the symptoms, plus, more importantly - were outside often. I'm so sorry that you have to go through all of this - and I wish you and your son the best regarding future treatment. Ugh.

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  54. Hope you are feeling better soon. thanks for the warning, maybe you will prevent someone else from a similar fate. I hope your son is better soon also. Good Luck!

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  55. Jan, I am so sorry to hear about you and your son. The ticks are a big problem here in Sweden too, and I check every inch of my body every night in the shower. So far, I haven't found any ticks. But my dog gets them all the time. I have a friend who was lying sick in his bed for more than 6 months due to Lyme, and it took several years for him to recover. But now, I'm happy to say, he's fully recovered.
    I hope there will be a cure for you so it doesn't have to be chronic.
    My thoughts are with you.
    /Helen

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  56. Hi Jan

    I'm sorry that the Lymes is such a bluddie performance.

    At least it has been recognised by your doctors. Just keep in touch with Joanne. I'm sure it'll be beaten, just keep putting you foot down if you feel the medical people aren't convinced.

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  57. First of all that moth is just too cool...I just keep looking at it! Secondly I am so very sorry for the Lyme issues you all are having...ughhh it sounds just terrible. I hope you find a knowledgable doctor that will help you and your son make a full and speedy recovery. Kim

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  58. Thinking of you - thank you again for the blanket, love it!!!
    MB

    ReplyDelete
  59. I made a special post for you,

    http://alltkangronska.blogspot.com/2009/07/blog-post.html

    MB

    ReplyDelete
  60. Oh no oh no oh no oh no!

    I was really sorry to read this, Jan. It is wildly frustrating and frightening to have an illness which affects your life in this way. And it's wildly frightening and frustrating having something which doctors don't recognise. I'm glad you are in touch with Joanne. Such link-ups can can be powerful engines for change as well as for mutual support.

    Hurray for the internet!

    Best wishes to you and your son.

    Lucy

    ReplyDelete
  61. Jan, I am sorry to hear that you and your son are in so much pain and trouble. Thank you so much for sharing your story with us. With your story in mind, I will be more careful when I am in the outdoor.

    Hope you and your son a speedy recovery!

    ReplyDelete
  62. Jan
    I am away visiting Dad without a computer but have been keeping up a little at the library.
    The IDSA review hearing seems to have gone very well so hopefully in time the guidelines will be changed to reflect that chronic lyme does exist.
    This link takes you into the presentations by both sides but coming down very much in favour of ILADS
    http://www.idsociety.org/Content.aspx?id=15026

    Best wishes Joanne

    ReplyDelete
  63. Here I've been whining on and on for the last couple of weeks about computer problems when dear people like you are dealing with real problems. You ALWAYS sound so upbeat and positive, hard to believe you and your son have been going through so much. I learned a lot by reading this post. Sending you and your son many, many positive thoughts for a healthy future. Keep us updated. The hummingbird moth is as pretty as pretty can be. Enjoy Maine...although I wish you were going to be in a high rise condo resort with not one tree in it's vicinity and NO ticks. I believe that WI has the second highest rate of Lyme Disease after Connecticut. That was a few years ago. Could be different now. I'm rambling. Sorry.

    ReplyDelete
  64. I don't know what else to say...just thank you for your thoughts and concern. I must tell you that I AM OK! I'm not feeling 'ill' and my son is fine, too! Overall, the quality of my life has been better than ever, since I've been taking antibiotics. My son is doing fine, as well...I just want to do the best I can for him so that's why we'll both go to a new Dr. in Sept. My writing the post was a way for me to vent...but it doesn't symbolize how my life is going at present!

    Please don't worry! Thanks for caring and commenting;-)

    ReplyDelete
  65. Well...just for the record, I've been having a LOT of pain lately; about the past week. Even on the antibiotics. My hands, right elbow and arm, right rib area, legs and feet, etc. It's hard to understand...it seems to get really painful, then let up for a few days. I have numbness with and without pain; tingling; elbow feels like I hit it on the corner of something and it sends shockwaves down my arm into my hands, and fingers. Right now I've been taking medicine which I usually don't take, simply because it's too much to deal with otherwise. I'm hoping to be back to normal soon...it's just something you take day by day, I guess...

    ReplyDelete
  66. Thanks for the update, even though it's not such good news. I hope the specialist is able to help you more. When I see birds, that will help me think of you and remember to pray. How is your son doing?

    ReplyDelete

Thanks so much for visiting and taking the time to comment! Please enjoy your TODAY and all of the gifts in YOUR garden of life!

Jan

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