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Nicki33
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/25/2010 8:50 PM (GMT -6)   
I just started my ABX,   Saturday will be my last dose. Being I don't have a LLMD close by I turn to you guys for answers because my doctor is in denial of Lyme. nono   When should the next doses be taken? Do I wait until I have a flare up again. I have been told by several people that I should have been taking a higher dosage that what I have been. 
 
Current --Doxy 100mg 2X a day ( for 2 weeks)
Started taking 200mg 2X a day yesterday.
 
 Honestly,  I have given up hope on doctors around here after the way I have been treated by 3 different ones in 2 weeks.  Its hard trying to get answers by doctors who turn their backs on us.  I cant afford to try to go to another one.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 4/25/2010 9:20 PM (GMT -6)   
Why aren't you seeing a LLMD? You really need to do that because your doctors aren't going to continue to give you abx for Lyme disease since they don't really believe in it or take it seriously.

You said on another thread you were recently diagnosed with lyme disease. By whom? Obviously not a LLMD or he/she would have you on 600 mg or more doxy a day.

Did you get bit by a tick, if so, how long ago?

I don't blame you for giving up on doctors, but as long as you don't see a LLMD you will never get the appropriate treatment. The longer you put off getting a proper diagnosis (Western Blot test by Igenex) and treatment from an LLMD, the harder it is going to be to treat this disease.

Lyme disease is nothing to play around with. Please make an appointment to see an LLMD immediately. If you need a referral, send me an email and I'll be glad to send you links to websites that will give you LLMD referrals in your area.

Gary

Nicki33
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/25/2010 10:14 PM (GMT -6)   
Gary easier said than done. We dont have a lot of money. I cant work like I used to due to this disease and my husband pays support for another child in MI and we also have 2 kids.
I diagnosed myself. The past 4 years my health has been going downhill. Before I was laid off from my job I had insurance and a family doctor whom said I had IBS, carpal tunnel, tennis elbow, depression, anxiety! DAg! I remembered all this I can't believe it! LOL Ok back on track. Then after I got laid off, everything got worse and worse. I had strange things going on with me that I couldn't explain. I thought I was just really depressed and making myself sick. But I normally can pick myself up and couldnt so I just went on but getting sicker physically and mentally. I tried to go back to college but my memory had gotten soo bad I couldn't remember anything when I went for a test. So I had no choice but to quit.
Being we have no money I finally called the free clinic and scheduled an appointment to see a doctor. I took my dad with me to try to help me explain some things that had been going on. Memory loss, forgetfullness, arthritis,etc. And the doctor looked at me and asked me what did I want. I looked at my dad in confusion. He grabbed my hands and looked at them and said you dont have arthritis but I will test you since rheumatoid is in your family, which was negative. He was assuming I was there for pills!!!!!!!!!!!!! Why would I take my father with me to the doctor and try to get pills? So after that, I gave up again and thought I will just try to deal with this, still not having a clue why I was like this?
My son got a tick bite,(we have ticks bad and get bit every year) and I took him to the pediatrician and she gave me a paper on Lyme disease. I read it and it and I was like holy cow!~ She told me to take him to the Lab and have him tested. When I went to the lab I asked them if they would test me and gave the explanantion why. They let me have the test done with no money in hand to pay but took my word that I would pay the next day. I got our results the next week, my son, - me,+ 1.21

I called scheduled an appointment. This time my husband went with me, I handed the doctor the test results. My husband said it hurt the doctors pride because the first thing he said was, who ordered this test? I said, I did! he said they cant do that! Oh yes they can. In VA any person can walk into a lab and have a test done without a doctors order. I said dont you remember the last time I was here with these symptoms, his reply was oh yea, I noticed that when I looked back in my chart. He said to take 100mg Doxy 2 X a day. He also stated that we dont have Lyme here in this area. Which is hogwash because the lab I went to has had 18 cases in the past 6 months.The doctor said a preacher here locally wrote a write up in the paper while back about his wife and was starting stuff when its not an epidemic. I asked him if I was going to go through herxing because I had read about it and he said there was no such thing but people who had syphillis done that but not people with Lyme. He told me that I shouldn't read things on the internet unless it was a scientific fact not to go by what people put on forums. So then, my husband started asking him about further testing and the doctor said that I didn't need anymore. Just to take the ABX and I will be fine after that. I seen 1 more doctor at the clinic after that because I had an llergic reaction to the ABX and I got pretty much the same treatment by her but one thing I have to giver her she did run an EKG just in case but she was still skeptical about the whole thing for some reason. The when I went to UVA (in which I had to pay for and cant afford) same thing again!

The closest LLMD I have found is in Fairfax. I can barely afford to drive to work and it broke me to drive to UVA to go to the ER, cost me $60 driving my Explorer and $180 for the visit with a low income discount. UVA has an Infectious disease center. I called there and they said I would have to get a referral to go there. I called the clinic here last week and they have never called back to give me the referral. Im also waiting on a call from a rheumatologist from UVA.
Have been misdiagnosed for 4 years until March 26, 2010.
 
Thank goodness for good information and the little bit of brain I have left  or I would still be misdiagnosed! Thank you to Rockbridge Labs for letting me walk in and having myself tested and taking my word to pay!
 
Dear Self, Don’t worry, the Lord will protect you. Relax. Be patient. Have faith. Nothing’s too big for God to handle! ~


Nicki33
Regular Member


Date Joined Apr 2010
Total Posts : 22
   Posted 4/26/2010 8:57 AM (GMT -6)   
Gary! I found a local support group last night. The woman wrote me back and there is an LLMD 45 minutes away! But the question is how am going to pay? hmmm Figure it out when I get there.
Have been misdiagnosed for 4 years until March 26, 2010.
 
Thank goodness for good information and the little bit of brain I have left  or I would still be misdiagnosed! Thank you to Rockbridge Labs for letting me walk in and having myself tested and taking my word to pay!
 
Dear Self, Don’t worry, the Lord will protect you. Relax. Be patient. Have faith. Nothing’s too big for God to handle! ~


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 4/26/2010 9:13 AM (GMT -6)   
Nicki, awesome that you found a LLMD so close! So sorry for all you've been going through. You've been through so much, yet you continue the good fight. I admire you for that. Keep fighting it and don't give up. I pray that somehow the finances come in for you or that the doctor will take payments or that somehow you'll be able to get the treatment you so badly need. As you say in your post on the bottom, "Nothing is too big for God to handle". So true!

Praying for you.

Keep us posted!

Gary

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/26/2010 12:58 PM (GMT -6)   
Hi Nikki,

This is a snippet from the ILADS site on dosing for Doxy. Good luck with this new doctor. I hope he can help you.


Dosage

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.

With higher doses, there may be an increase in adverse events in general and gastrointestinal problems in particular. Acidophilus has reportedly reduced the incidence of Clostridium difficile colitis and non-C. difficile antibiotic-related diarrhea.

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

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