If you are not a registered member of our community, please click here to register...

 Home Message Boards Health Guide Join for Free Testimonials About Us
Search
   
  


PDA

View Full Version : Lyme Disease in Texas


 

 

 
Kathy Boss
09-02-2002, 11:01 PM
I recently have been diagnosed with Lymes. I have seen 13 doctors and had 34 of the 38 symptoms on the Lymes check list. I saw 12 doctors in El Paso Tx and did not receive help or even met a doctor that tested for Lymes untill I came to Fort Worth Tx where my father lives. I had biopsies (4 of them) that said I have Granuloma Annulare in El Paso. Not believing this because I felt so ill I went from doc to doc. The 12th doc asked if anyone had mentioned Lymes. That was on a Friday and that following Monday morning I was to make an appointment @ Mayo in Scottsdale because my internist did not know what to do with me anymore. My father emailed me an article from his local paper about a doctor in Bedford Tx, that is a Neurologist specializing in Lymes. Now I am on 200 Mil's a day of Doxy. He wanted to start me out at 400 Mil's but, I am so far advanced he said adult dosages would make me to ill. 2 weeks ago I started out on 50 Mil's twice a day. His name is Hamid Moayad if this can be of any help to anyone out there.

Sponsor
 



jane7178
09-06-2002, 03:55 PM
Hi Kathy,
I contracted Lyme disease while living in east Texas.
After months of seeing different doctors, I finally found one who specializes in Lyme Disease in Dallas, Texas. She quickly made the diagnosis through lab tests and began treatment. I had been so ill for 27 months, and was progressively getting worse. I can highly recommend her, as she has truly given me my life back.

Kathy Boss
09-07-2002, 04:05 AM
Hi Jane, Thank you so much for your reply. I'm a new lymie and have been searching every subject and group board I can find. I just got the second part of my blood test from the lab in CA. I tested positive on all 5 bands (hope I said this correctly) and have a co-infection and I have the rash. I'm still trying to understand all this. My stepmother tried again today to get the Dr. to give some kind of commentment to how long therpy would be. I kinda understand now why it is still to early for him to say and if ever he can say how long treatment will last. How long have you been in treatment? Which Med's do you use?

jane7178
09-07-2002, 01:06 PM
Hi Kathy,
Just checked here and found your post. If you have just recently contracted Lyme, you can be completely cured with aggressive antibiotic therapy. That is the good news. Most people are not diagnosed for months, and then they have the chronic form. The Doxy did not effect me at all, so I went on 3000mg. of Amoxcillin a day for several months. You can tell that the antibiotic is working if you have a herxheimer reaction. Have you had that? I got so much better that all my symptoms disappeared, so I came off the medicine. Of course, the symptoms returned, and that time the same treatment did not work, as Lyme programs itself not to respond to the same antibiotic twice. I had to go on bi-cillin injections then, starting with two a week, then one a week, then one every other week, then one a month. I did that quite willingly for five years. I know this stuff is nothing to mess around with. If you don't fight it hard, you don't win the war. You have to treat it agressively and relentlessly. When I quit having the herxheimer reaction for several months after getting the shots, I just knew when it was time to stop them. I have a mild flare-up from time to time that two Z-packs taken five days apart deals with just fine. I cannot stress to you enough how important it is to pull out all the stops and fight! My doctor in Dallas gets all the credit for treating me until I got my life back. She did not hesitate to do whatever it took. I am on nothing now, and have not been for two years. I am doing fine. I have my life back, and I never thought that would be possible. I did not mean to write such a long post, but I am so eager for people to know that you can get better. You just can't waste anymore time than is necessary to get on that path with good, sound, medical treatment. I wish you the very best. I hope this has helped. I know there are so many horror stories, and I was more ill than you can imagine for a very long time. But, I am here now and I am well, and I am so thankful - just wanted to share that.

Kathy Boss
09-07-2002, 10:24 PM
Hi Jane, Thank you so much for responding.I was recenlty diagnosed but the Dr. said I have been infected for approx 2 years by looking at my blood test.Which is right on the money as far as the first time I went to my family MD with problems in sleeping, panic attacks,chest pain,unexplained sore throat,hands falling asleep.And they were not all at once but got worse each year.This last summer of 2001,June,I begun with a dry hacking cough that lasted untill that Nov.Dr out me on antibiotics & inhalers we did this untill Jan 2002 which is when I started with the rash.After that as each month came & went I got worse, the confusion started in,forgetfullness,horrible hangovers if I drank and the rash is all over me. Aug is when I found Dr. Moayad.What is herxing?My first week seemed ok on 100 mil's of doxy and then when we increased it to 150 for a few days I felt ok and on the 3 day started 200 mils.That only lasted 2 days and landed me in bed for 5.For 4 days after that we stuck with 150 mils and as of today I had to go back to 100 so I can function. I have one to 2 more weeks here before I have to go back To El Paso and back to work.I don't know how I'm going to do it and I'm really scared.I'm also getting very depressed.I'm going on 3 weeks of treatment as of this Tues.I am what is called acute dissmented lymes(hope I said that right)From what I understand DR.Moayad is suppose to be one of the top DR's in the field.Who is your Dr.Thank you for your help!

jane7178
09-08-2002, 02:14 PM
Hi Kathy,
When you landed in bed for five days, you were having a herxheimer. That is when you know the medicine is working. They are tough, but just something you have to go through to get a handle on this infection. I always thought of it as the bacteria throwing a temper tantrum, and I was determined not to let it win!! Although the herxheimer reactions are bad, they do pass, and when they do, you are one step closer to getting better. I can't believe you are in Dallas! The best Lyme doctor in the world is right there. Her name is Dr. Audrey Stein Goldings, with Stein Goldings being her last name. I'm not taking anything away from the doctor you have found, but I know, know, know from experience that Dr. Stein Goldings knows exactly how to treat Lyme Disease. She did extensive studying and is devoted to her patients. I cannot tell you how ill I was. I had it for 27 months before I was diagnosed. I did not think that I would ever get my life back. But, I have it back, and it is because of Dr. Stein Goldings. She is in a convenient location. She is a Neurologist. She is wonderful. Her staff is wonderful. I am living in Georgia now, and I have been in complete remission for over three years now, and that is something I thought would never happen. Lyme disease is a nasty thing, but it can be conquered with the proper medical care. It takes a while, but there is nothing that can be done about that. It was enough for me to know that each day I was one day closer to getting better, and it was just something I had to go through. I know what you are going through. Hang in there! I wish you the very best. If I can be of any help, just let me know.

Kathy Boss
09-08-2002, 05:00 PM
Jane, Thank you again for replying.I cut myself back from the 150 mil's of Doxy yesterday to 100 mil's to see if I could get aound better.And, it worked.I have to get where I can function.Did you ever do this?Mt Dr.says if I'm in a horizonal position all the time the doxy is too much and to back off by 50 mils.My temp has been 97.1 to 97.8 for the last 10 months.Now as of today I woke up with it at 98.8 and by noon it is 99.1.I can't believe it, I have a fever for the first time in months.Is this also a part of herxing?Do you know if the Dr. in Dallas accepts Ins?This is a problem with the DR. I'm seeing now. I pay $500.00 a week to keep up with the blood test.My In has a %15 co pay and if I go off the plan I simply pay %20.I don't understand why I can't use it.Any help again would be greatly appreciated.

jane7178
09-08-2002, 06:03 PM
Hi Kathy,
This is great news!! You are having a herxheimer reaction, which means that the bacteria is on the run. Hurrah!! I do know that when you run this low grade fever though that you are burning up!! Take whatever you like to take to reduce your fever, and that will really help. Yes, my wonderful doctor does accept insurance. She fought the insurance companies hard to get coverage for Lyme patients. After we moved out of state, I kept going back every six months to see her. We just took the time and went. It is too important to finally find a good doctor, to just stop going because you live out of state. She is very accomodating to your schedule too. After all the nightmare doctors I had seen, she was a breath of fresh air. There was no more of that "waiting" for an appointment, etc. If you need to see her, she sees you. I truly am excited that the medicine you are on is working. Stick with it. You don't want to have to take the broader spectrum antibiotics if you don't have too. They sometimes have side effects that you simply don't need on top of the Lyme symptoms. Just remember that the herx reactions mean that the medicine is killing off the bacteria, and you have to stay with it, you can't stop and give the bacteria a rest. The medicine wears it out and forces it into remission, and you can keep it there. I am living proof of that. I am only too happy to help anybody get through this. You are on the right track. My doctor does take insurance and that was a great help. I don't know what we would have done otherwise. I'll keep a check here so write anytime.

Kathy Boss
09-09-2002, 12:12 AM
I don't think a second opinon would hurt.I just read so much about IV's and other meds.I want to know all I can.I only have a week to two weeks max here in Ft Worth before I go back to El Paso.I went ahead and took my 3rd doxy tonight.They way you put it if I'm giving the doxy a rest then the Bb is getting a rest.I have never heard of a treatment (except for Cancer)where you get worse before you get better.The bug's thought they had a night off to regroup and I guess I just sent in the 362nd air bergade on them dropping bombs with my 3rd doxy.Well at least if I herx I'll be asleep I hope.Sleep has been messed up forever anyway.Maybe if I put a longer gap between the 50 mil's I won't herx so bad. My Dr says if I were to take 100mil's at one time I would be in ICU.

jane7178
09-09-2002, 10:06 AM
Hi Kathy,
I like your attitude! You have declared war on this bacteria! Good for you! I know you will be one of the people who will get better now! Bombs away!
I disagree with your doctor, I'm sorry. I don't think ICU is in your future no matter what the treatment. I never had IV therapy, didn't need it. I just did what the doctor told me to do, and I was relentless about that. As far as I can tell, the people who really get into trouble are the ones who keep stopping their treatment when they feel a little better. I took my medicine, day in, day out, for months and months. I was not going to give this bacteria time to multiply, but wanted to force it into remission. I did that. You do have to feel worse for a while before you feel better. That is hard, but otherwise, the enemy bacteria marches right on. I would be happy to call my doctor in Dallas and give her your name. Could you go to see her anytime while you are there in Ft. Worth (I love Ft. Worth by the way)? I think you could get in quickly, and it would be worth your time. She has done so much research, and she just nails this disease. It takes a little while, but you do get your life back. You start having more good days than bad, and then longer and longer between the bad times, and then one day you realize that, hey, I'm better!!!! She has a positive approach, she knows how to handle this, and she does not hesitate to do just that. I am just thrilled that you are right there, close to her, where you could get there if you chose to do that. Keep me posted. I am pulling for you all the way.

Kathy Boss
09-09-2002, 10:46 AM
Good morning Jane,Yes, If I can get a referral from you and get in faster that would be great.I planned on leaving this weekend depending on what My Dr. says at this Fridays visit.However,if there is any way I can see your Dr.Today,Wed of Fri that would be great.If there is no other way than to see her Tues or Thur I will make arrangements for that.It's just that the woman that drives me is in school on Tue & Thur.I have the rash (bumps)on the white of my eyes which has now been 5 weeks.As I see the bump's mutiply I fear for my eyesight.If this rash covers my eyes as it has the other parts of my body, I'm in trouble.I try my hardest to remain calm and just hope for the best.I also had an MRI 5 weeks ago.I brought them with me.The radiologist noted 2 white leisons.All the doctors I saw in El Paso disreguared them.The radiologist said it was MS.My DR, here looked at them and disreguared them too.He said they were just bright spots.But, now I read different reports about Lymes and how these bright spots are directly linked to Lymes.I'm also concerned that I get no kind of advice from his staff like a "go by sheet".It would have been nice to have either someone tell me or give me a fact sheet to take home to as to "what to do" "What not to do", what herxing is ect.Now I read all kinds of things that say,"do not take mutivitims with minerals" with antibiotics, do not take doxy within 1 hr of lying down,Do not use sugar or starches,ect ect...what kind of supplements should I be using and how should I be using them ect ect........Does this doctor offer any advice such as this? Thank you so much......

jane7178
09-09-2002, 12:11 PM
Hi Kathy,
So glad to hear back from you so quickly. I have placed a call into my doctor. I am to call back this afternoon to see if they can see you on Thursday. That is the only possible day available, but I'm talking to them, so we will see about that. I'll talk more to them this afternoon. With your permission, I will explain your situation about being there now and having to go back to El Paso. But, I want to assure you that she is your ticket to getting well, period. They are accepting new Lyme patients at the moment too.
I am so excited, I can hardly breathe! Hang on. Keep a check here, as I will be in touch all day.

Kathy Boss
09-09-2002, 01:56 PM
Jane, again, thank you so much.I did find out from my Dr's office they are now filing with my Ins co $1350.00 later.Anyway, if this Dr. is in my net work I pay %15 if she is not it is just %30.Either way I'll still see her.Yes please expalin my situation to her.I just want to make sure I am doing the right thing.As I said before my eyes are my main concern.The herxing I can deal with, this horrible rash all over me I can deal with,ect....My eyes are my biggest concern.My Dr. has not had a patient with the rash on their eyes.I'm curious if your Dr Has.I have to sleep noe, this mornings trip has made me very tired.I'll probably on nap an hour or two.I will stay in touch with you today.Thank you so much, you have gone beyound the line of duty.

jane7178
09-09-2002, 02:04 PM
Kathy,
Just stand by here after your nap. I will know something later today and will contact you here immediately.

jane7178
09-09-2002, 04:41 PM
Kathy,
I just talked with my doctor's office again, this time to the nurse. They have absolutely no openings until October. I am so sorry. She said the schedule was just so very full. I told her that you had seen a doctor in Bedford, and she called his name, as they knew about him. She said my doctor would be glad to talk with him about you if he would call her. I highly recommend this. However, if at all possible, I would call my doctor and ask for the first available appointment and come back to her. I don't know your situation about that, but if you could do that, please seriously consider that. That is one gift that I could give, and that is to get you to my doctor. You also could call them every afternoon to see if they have had any cancellations that would work for you. Those things do happen. I have had to change appointments at the last minute before. My doctor is in Dallas, first name Audrey, last name Stein Goldings.
I can't say more than that because of the rules. I am always concerned about breaking a rule, and would not ever mean to do that. Do you think this will help? Your doctor should be willing to call her about you. Whether he will or won't will tell you something right there. She is a positive expert in the field of Lyme disease. I would crawl to get to her if I had to. When I found her, my search was over, and I did get well. I just did what she said, and I didn't search for answers anywhere else, because she had them all. There was never a need to go anywhere else. I hope this will help you. It will be worth the wait to see her, because your problem would be solved at that point. You can get by with what you are doing until you could get in with her. I hope your doctor will agree to contact her. Let me know if I can be of any help.

Kathy Boss
09-09-2002, 05:07 PM
I'm going to call her office anyway and see what the Oct schedule is like.I don't know if he will talk to her or not.He had me sign this piece of paper stating i would not see another doctor.His reason at the time is that other doctors that are not LLmd treat with steroids alot of times and people have died.Please stay in touch, thank you for all your hard work, I will follow up.

jane7178
09-09-2002, 06:00 PM
Kathy,
OK, there are flags going up all over the place here.
I just called back and talked to the nurse. They are expecting your call, Kathy from El Paso, is all I knew to say. Ask to speak to the nurse, she has my info and knows me. Please stay in touch. I'll tie a knot and hang on to you until you get help. Tell her you talked to me here on this healthboard. I'll keep a watch here for your posts. Elizabeth Jane

jane7178
09-11-2002, 12:13 AM
Kathy,
I have been so anxious to hear from you again. I so hope you called my doctor. That will be the last doctor for Lyme disease that you will ever need to see.
I know you don't know me, but I cannot stress this to you enough. She will help you. She has the expertise.
I hope you are not too ill to write here.

Kathy Boss
09-17-2002, 12:21 AM
Jane, sorry I have been gone for so long. I have been doing allot of research. Thought I would let you know I am seeing your doctor tomorrow.

jane7178
09-17-2002, 10:56 AM
Kathy,
I am so thrilled to find your post here!!!! I have been checking, and I have been so worried about you, just beside myself really. I can't find the words to tell you how thrilled I am that you have an appointment with my doctor TODAY!! I can't believe it! You must write and tell me about it. Your worries are over now, just know this. Your search for help is over. You have found it, no doubt about that. She will take hold and take care of you. She knows Lyme disease inside and out. You need to never look any further. Thank you for calling her. I am just thrilled, just broke down and cried, which is something I rarely do. Take care. God bless you.

Kathy Boss
09-18-2002, 02:54 AM
Hi Jane, you are so sweet! I really need to talk to you on the phone or email. How can i get in touch with you.

jane7178
09-18-2002, 11:29 PM
Did you go to my doctor? I'm so anxious to hear about it. The nurse has all the info for you. I asked her about doing that specifically for you.

jane7178
09-21-2002, 10:12 PM
Kathy, please let me know how your appointment went. I am so anxious to know. Are you on treatment now and what is it? I may be having to make a trip back to Dallas myself, as I realize that I am out of remission now, after having symptoms for several weeks. I am very anxious to hear from you.

cindybobindy
07-29-2004, 10:13 PM
Kathy, please let me know how your appointment went. I am so anxious to know. Are you on treatment now and what is it? I may be having to make a trip back to Dallas myself, as I realize that I am out of remission now, after having symptoms for several weeks. I am very anxious to hear from you.


I have been reading this thread, and am on pins and needles wanting to hear what happened with Kathy!!!

Jane, I could use some advice too.....can you e-mail me? (I live near Dallas and am looking for a Lyme Doctor)....(long story).
Thanks,
Cindybo





Site owned and operated by HealthBoards.com (TM)
Copyright and Terms of Use © 1998-2009 HealthBoards.com (TM) All rights reserved.
Do not copy or redistribute in any form!