Aa
Sick and Tired
I was diagnosed approximately three years ago with Lyme Disease. I live in Arizona and I'm struggling to find a doctor to help me out. I didn't actually end up with the disease from Arizona as far as I know but I may have had it for the last few decades. After almost 2 years of testing my doctor randomly through Lyme into my tests and it came back positive. After that I had two more tests and they were both positive as well. I went through the rounds of doxycycline and Azithromycin. Only to be hospitalized due to infectious disease doctor. In which I had to write a manual of details on how I was doing the effects and what was going on for him to even take me as a patient. Arizona is known not to have any MDs that deal with Lyme. I was fortunate that my doctor hospitalize me however three years later I am still extremely Ill. I still work however I have constant numbness throughout my body.I have massive migraines in which I see Neuro every four weeks and they put the Band-Aid of medication on me for that. I'm so exhausted at times that I have to literally nap every single day in order to be able to function. The migraines are frightening as I have them almost every single day with an aura as well as severe nausea and head pain. And during the time this all occurred I had a grapefruit size tumor removed from my right armpit. I now have another growth at the base of my neck next to my spine below my head and I'm scared. I know this is very long but I threw out as much as I could in hopes that someone might actually have a doctor I can find either in Arizona or anywhere on the West Coast. I am still not well no matter what the doctor say. something is still wrong and all of my symptoms point to the Lyme diagnosis. Please to anyone who might have advice for me it be so appreciated.... I just want to get well. BTW- I'm a single mother raising a teen, which is were my strength to work comes from. At 36 years old I am 5'6 and about 110lbs on a good day. I can't eat... And exhausted, sleep is all over the place. Thank you to anyone with some answers
Welcome to MedHelp Lyme -- sorry to hear about your son's ailment, and am glad to share my doc's name with you, but will do so through a 'private message' on this site, to avoid giving out the doc's name in public.
In the blue bar at the top of the MedHelp page here, you will see 'My MedHelp', and when I have sent you a PM [private message], you will see "(1)" next to 'My MedHelp', indicating that you have received a message. Just click through. We can correspond more privately that way, tho the staff at MedHelp can access the messages.
Will go send a message that way to you now. Rgds J -- and if you have any problems with this [it can be a little confusing at first], respond to this message and tell me you're having problems getting through, but it should work fine. J.
In the blue bar at the top of the MedHelp page here, you will see 'My MedHelp', and when I have sent you a PM [private message], you will see "(1)" next to 'My MedHelp', indicating that you have received a message. Just click through. We can correspond more privately that way, tho the staff at MedHelp can access the messages.
Will go send a message that way to you now. Rgds J -- and if you have any problems with this [it can be a little confusing at first], respond to this message and tell me you're having problems getting through, but it should work fine. J.
I am new to the group. My son has Lyme, he is currently going to school at Berkeley. I am in San Diego. We are looking for a Lyme doctor, sounds like you had a good doctor. Who was your doctor?
Thank you for your help!
Thank you for your help!
PS
I just sent you a 'private message' through this system. Look at the top of the screen, and you'll see a blue bar. One item is 'My MedHelp'.
Hover over that item, and there will be a drop down menu. One item is 'inbox'.
If there is a number beside it like "inbox (1)", then you have a message.
Click the 'inbox (1)' button and it will open up to the message, which is more about finding a Lyme doc. Best wishes!
I just sent you a 'private message' through this system. Look at the top of the screen, and you'll see a blue bar. One item is 'My MedHelp'.
Hover over that item, and there will be a drop down menu. One item is 'inbox'.
If there is a number beside it like "inbox (1)", then you have a message.
Click the 'inbox (1)' button and it will open up to the message, which is more about finding a Lyme doc. Best wishes!
Welcome to MedHelp -- if it's any consolation, many of us have been through what you have.
--- You say: "After almost 2 years of testing my doctor randomly through Lyme into my tests and it came back positive."
This was true for me too, only it was 20+ docs and it 'only' took a year. The doc who did the test that came back positive said I 'couldn't possibly have Lyme' because I wasn't sick enough. Uhhh, wrong. I took the positive test and found a REAL Lyme doc.
--- You say: "After that I had two more tests and they were both positive as well. I went through the rounds of doxycycline and Azithromycin. Only to be hospitalized due to infectious disease doctor."
Do you have copies of all these tests? If so, always keep your own copy, but also be sure your next doc gets a copy too.
From what I read, if your infection is not very recent, then doxy and zith alone won't work. The Lyme bacteria go out of the bloodstream (where those particular meds can find and kill them) and the bacteria go hide in cartilage and other places where the immune system doesn't 'see' and the meds don't reach. Different meds are usually given by a Lyme specialist to overcome this issue.
--- Are you aware of this group? -- www [dot] azlyme [dot] org --
or if the computer system is kind today, it will print it out as it should read: www.azlyme.org
They can probably help you find a doc who understands Lyme.
--- Go for it and don't give up! Let us know how you do and if you need more ideas etc.
--- You say: "After almost 2 years of testing my doctor randomly through Lyme into my tests and it came back positive."
This was true for me too, only it was 20+ docs and it 'only' took a year. The doc who did the test that came back positive said I 'couldn't possibly have Lyme' because I wasn't sick enough. Uhhh, wrong. I took the positive test and found a REAL Lyme doc.
--- You say: "After that I had two more tests and they were both positive as well. I went through the rounds of doxycycline and Azithromycin. Only to be hospitalized due to infectious disease doctor."
Do you have copies of all these tests? If so, always keep your own copy, but also be sure your next doc gets a copy too.
From what I read, if your infection is not very recent, then doxy and zith alone won't work. The Lyme bacteria go out of the bloodstream (where those particular meds can find and kill them) and the bacteria go hide in cartilage and other places where the immune system doesn't 'see' and the meds don't reach. Different meds are usually given by a Lyme specialist to overcome this issue.
--- Are you aware of this group? -- www [dot] azlyme [dot] org --
or if the computer system is kind today, it will print it out as it should read: www.azlyme.org
They can probably help you find a doc who understands Lyme.
--- Go for it and don't give up! Let us know how you do and if you need more ideas etc.
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