Aa
Been a long time
Hello everyone,, I know I haven't been here in a long time, but I finally got a positive bloodtest. I still am very shocked at the fact that the IDSA and CDC do not want to recognize this as a red flag problem for all of us. I was infected 25 yrs. ago. I was told I had Cat Scratch Fever aka Bartonella. After all of these years and constant torture through out my life, seizure disorder, Graves Disease, Graves Eye Disease, Chronic sinusitis, optic neuropathy, double vision..... I finally have a conclusive test proving that it's still in me... Chronic lyme does exist and it's sad that the big people that decide when and how much treatment we get can make these decisions and make our drs. not want to treat us because of the conspiracy behind it. I am so grateful to be seen by a LLMD that goes according to Ilads guidelines.
Prayers for all of you!!
Pam
Prayers for all of you!!
Pam
Best Answer
LOL LOL,,, Thanks Jackie,, I was starting to think,, hmmm, I can't even open up the right link to something I wrote,, Phew is right!!
Thanks!
Not to worry -- life is SO stressful these days (even without Lyme!) that I'm surprised I can manage to find my way to the refrigerator for nourishment. :)
Be kind to yourself -- you're doing fine!
Not to worry -- life is SO stressful these days (even without Lyme!) that I'm surprised I can manage to find my way to the refrigerator for nourishment. :)
Be kind to yourself -- you're doing fine!
http://publichealthalert.org/laurawild/pamela
maybe this one is better,,,, lol,, sorry everyone, I get confused sometimes, lol its like I have a broken wheel,, I want to turn the wheel right and turn it left intsead,, OMG,, too funny
maybe this one is better,,,, lol,, sorry everyone, I get confused sometimes, lol its like I have a broken wheel,, I want to turn the wheel right and turn it left intsead,, OMG,, too funny
I just typed it into google and after ( /laurawild/pamela) the link appears on google results,,its the first one and you'll see my name and the title Chronic Illness.. make sure it says public health alert and not a different link, it will take you to God only knows
let me know if it worked
link:
publichealthalert.org/articles/laurawild/pamela
let me know if it worked
link:
publichealthalert.org/articles/laurawild/pamela
Hi Jackie, I will try my best to get the link to you, if it doesn't work I will try again... www (dot) publichealthalert (dot) org/lolArticles/laurawild/Pamela%20Ward%20Lyme%20and %Graves.pdf
yeah its alot harder to figure out how to type up a link instead of just hitting share,, lol
yeah its alot harder to figure out how to type up a link instead of just hitting share,, lol
I can't find the link to the right public health alert page -- would you repost it, with enough spaces and so on so it gets past the URL filter here? I wanted to send it on to someone I know.
Thanks!
Thanks!
I haven't had the chance to read it yet as I have family visiting and have been maxed out. I will soon!
I read Wild Condor's story shortly after I got diagnosed (nearly a year ago). It is a testament to her determination to live that she survived her ordeal. I seem to recall two years of steroids? It is hard to comprehend how sick she was. I look forward to reading your story.
And I have concluded that some very significant changes that need to happen are:
for the CDC to acknowledge that their surveillance testing is inappropriate for diagnosis,
that Lyme can survive recommended treatments and in some cases, even long term treatments,
and that the actual number of cases is geometrically higher than the reported cases (they have acknowledged this at a medical conference, but not in any public way that I can find),
Once we get past the test interpretation problems, it will become abundantly clear to the medical world that Lyme is far more varied and serious and common than currently acknowledged. I just wonder what it will take to get the CDC to admit that they ALREADY know these things about Lyme Disease.
I read Wild Condor's story shortly after I got diagnosed (nearly a year ago). It is a testament to her determination to live that she survived her ordeal. I seem to recall two years of steroids? It is hard to comprehend how sick she was. I look forward to reading your story.
And I have concluded that some very significant changes that need to happen are:
for the CDC to acknowledge that their surveillance testing is inappropriate for diagnosis,
that Lyme can survive recommended treatments and in some cases, even long term treatments,
and that the actual number of cases is geometrically higher than the reported cases (they have acknowledged this at a medical conference, but not in any public way that I can find),
Once we get past the test interpretation problems, it will become abundantly clear to the medical world that Lyme is far more varied and serious and common than currently acknowledged. I just wonder what it will take to get the CDC to admit that they ALREADY know these things about Lyme Disease.
You are so right about it being incomprehensible! I am in shock of how many people that I have met, either through the internet (FB) and also right here in my area.I never knew how bad it really is,, (not the disease - we all know how bad that is) but the ignorance and the lack of knowledge about everything ! I feel like when I see some of my 100's of drs (exaggerated LOL) I have to educate them on it.
They are all under this impression that if your bloodtest doesn't pick it up, then you don't have it! < that frustrates me , because it took me a year of treatment before my bloodtest revealed anything.... then there is the assumption that if you go on abx for umm let's see.... 10 days that you are cured!!! I will pass my information onto anyone that I come across in my lifetime.. It's the least I can do.
Were you able to read my story? I'm not sure if you are familiar with WildCondor's story, but she was the one that helped me get my story published. It needed alot of corrections ( I tend to run - on ) haha,, but she felt it was better for it to be raw, and spoken just the way it came out on the paper.
This disease definately puts your whole life into a different perspective. You appreciate the smallest things and could give a @#$% about the material things. I used to be a caregiver at my job for 16 yrs.. Now there are times that I need someone to care for me. I will just continue to pray for EVERY SINGLE ONE OF US to be HEARD!
We deserve to be treated better than what we have been dealt. I believe that something is going to happen for all of us , and we will finally have a voice.
Pam :)
They are all under this impression that if your bloodtest doesn't pick it up, then you don't have it! < that frustrates me , because it took me a year of treatment before my bloodtest revealed anything.... then there is the assumption that if you go on abx for umm let's see.... 10 days that you are cured!!! I will pass my information onto anyone that I come across in my lifetime.. It's the least I can do.
Were you able to read my story? I'm not sure if you are familiar with WildCondor's story, but she was the one that helped me get my story published. It needed alot of corrections ( I tend to run - on ) haha,, but she felt it was better for it to be raw, and spoken just the way it came out on the paper.
This disease definately puts your whole life into a different perspective. You appreciate the smallest things and could give a @#$% about the material things. I used to be a caregiver at my job for 16 yrs.. Now there are times that I need someone to care for me. I will just continue to pray for EVERY SINGLE ONE OF US to be HEARD!
We deserve to be treated better than what we have been dealt. I believe that something is going to happen for all of us , and we will finally have a voice.
Pam :)
Pam,
Thanks for the update. You have really been through a lot. It is really incomprehensible how many people are sick with Lyme because of a few arrogant, power hungry doctors. It is hard to believe it unless you truly understand it.
I understand the new mission. I feel the same. There is a profound purpose in being able to point people with late stage Lyme to a diagnosis and a doctor who will treat them. We have to do it because most doctors won't or don't know how!
I hope you start feeling better soon!
Thanks for the update. You have really been through a lot. It is really incomprehensible how many people are sick with Lyme because of a few arrogant, power hungry doctors. It is hard to believe it unless you truly understand it.
I understand the new mission. I feel the same. There is a profound purpose in being able to point people with late stage Lyme to a diagnosis and a doctor who will treat them. We have to do it because most doctors won't or don't know how!
I hope you start feeling better soon!
Thanks for reading my story.... yes my life has been a battle as I know all of us have had . I did have some pretty "dumb" doctors and they are very dismissive, completely uncalled for. No one asks to be sick or have health issues. Why in the world would someone want to pay out of their pocket so much money and waste precious time to look for a problem. It's absurd and to think Drs get paid so much money to label you incorrectly, I believe could fall into malpractice.
Thank you for such kind words regarding my story. I hope it can help others out there that are still searching for answers. I may not be able to work anymore, but I do try to make my life as liveable as possible, and by me spreading the word about Lyme Disease, I now have another purpose in life. Being a great mom to my kids is my #1 priority. Sometimes my husband doesn't understand when I am trying to give guidance to "strangers" but I tell him it's my new mission in life..
Still praying for all of you dealing with this dreadful disease, and once again want to thank you for THE GUIDANCE FROM THIS GROUP , without this group, I would probably still be in limboland!
xoxoxoxo
Pam :)
Thank you for such kind words regarding my story. I hope it can help others out there that are still searching for answers. I may not be able to work anymore, but I do try to make my life as liveable as possible, and by me spreading the word about Lyme Disease, I now have another purpose in life. Being a great mom to my kids is my #1 priority. Sometimes my husband doesn't understand when I am trying to give guidance to "strangers" but I tell him it's my new mission in life..
Still praying for all of you dealing with this dreadful disease, and once again want to thank you for THE GUIDANCE FROM THIS GROUP , without this group, I would probably still be in limboland!
xoxoxoxo
Pam :)
I just read your history in Public Health Alert -- all I can say is: you are one tough lady!
My second reaction to you history is: what a bunch of stooges too many docs are. But we all knew that, didn't we, or we wouldn't be here!
You have been through SO much, and I admire your grit and ability to 'keep on keeping on.'
Thank you again. J.
My second reaction to you history is: what a bunch of stooges too many docs are. But we all knew that, didn't we, or we wouldn't be here!
You have been through SO much, and I admire your grit and ability to 'keep on keeping on.'
Thank you again. J.
lol, Jackie, yeah it is a bummer, especially when you have short term memory problems and have to try to retype it all over again,,, I was getting very frustrated,, lol
I will go check it out, thanks
I will go check it out, thanks
Yeah, that 'lost post' thing has been happening lately.
Just below your post is one from me, titled "If the system says your post is too long, try this:"
It's a way to save what appears to be a lost post, and then to re-post it in chunks.
Bummer, huh.
Just below your post is one from me, titled "If the system says your post is too long, try this:"
It's a way to save what appears to be a lost post, and then to re-post it in chunks.
Bummer, huh.
I just typed the absolute longest post, and its gone!!! I am on abx and herbals Thank God for LLMD's because they are the DRSTHATDOHELP!
I have had many herx's that I never thought could be so bad. Couldn't walk for a week, knee pain, foot pain. If I went off my meds because I forot to call for a refill, I would start feeling like I had the flu;
my treatment has changed throughout the year. I am right now on 2000mg Biaxin and 1000mg of Plaquenil. Today, I have horrid back pain and I think I may have the flu;
I help alot of people now on FB, posting infol I have signed many petitions to change the IDSA guidelines;
I have had my bloodwork done at Quest Labs.. The only result that came back so far was positive Babesia.
I was denied IV treatment by insurance, but right now I am fine with what I have right now.
If any of you wanted to check out my story, it is published in PublicHealthAlert newspaper. Type in the link and then Chronic Illness battle with Graves and Lyme.... Its very long so a forwarn to all of you, if you are interested in reading, you'll be reading for about 45 mins. LOL
anyway,,, this better post ... haha, Missed all of you and will stop by more often.
Pam .
I have had many herx's that I never thought could be so bad. Couldn't walk for a week, knee pain, foot pain. If I went off my meds because I forot to call for a refill, I would start feeling like I had the flu;
my treatment has changed throughout the year. I am right now on 2000mg Biaxin and 1000mg of Plaquenil. Today, I have horrid back pain and I think I may have the flu;
I help alot of people now on FB, posting infol I have signed many petitions to change the IDSA guidelines;
I have had my bloodwork done at Quest Labs.. The only result that came back so far was positive Babesia.
I was denied IV treatment by insurance, but right now I am fine with what I have right now.
If any of you wanted to check out my story, it is published in PublicHealthAlert newspaper. Type in the link and then Chronic Illness battle with Graves and Lyme.... Its very long so a forwarn to all of you, if you are interested in reading, you'll be reading for about 45 mins. LOL
anyway,,, this better post ... haha, Missed all of you and will stop by more often.
Pam .
You might have to change your screen name to "FinallyDrsDidHelp" when you are finally well. :) And may that be soon.
Are you taking supplements and vitamins as well? So many docs have a blind spot when it comes to that, but it made a big difference to me. Magnesium especially helped, any variety ending in "-ate". My favorite is a combo capsule of magnesium citrate, aspartate and orotate (CAO), but others work too. (Lyme bacteria apparently use up magnesium in their reproductive process, and the American diet can be deficient as well.)
Are you taking supplements and vitamins as well? So many docs have a blind spot when it comes to that, but it made a big difference to me. Magnesium especially helped, any variety ending in "-ate". My favorite is a combo capsule of magnesium citrate, aspartate and orotate (CAO), but others work too. (Lyme bacteria apparently use up magnesium in their reproductive process, and the American diet can be deficient as well.)
I know how you feel exactly, the only good thing is we herx because of the die off so its a good thing that makes us feel so bad.
Keep strong, we are here for you anytime!
Keep strong, we are here for you anytime!
Thank you!! LLMD's are the best! Still very sick with herxing,, I wish these spirochete demons will just leave my body!! Everything comes back during treatment and OMG!! It's been awful!
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This link works, after cleaning it up to take out the spaces, and replace [dot] with a period in each case.
Whew! Not easy to find -- but rest assured it's not you, it's the way the publication is indexed. Thanks! I'll pass it along.