I just thought I'd give you and update about Dr. D...I saw him today. I was reading some of your posts and I wanted to mention a few things to you, and anyone else who goes to Dr. D, that may be helpful...
I've been taking plaquenil and Biaxin for almost 2 yrs., changing to tetracycline in between (didn't like it, made me sicker) but mainly on the same protocol. But today, since I am not getting any better with the biaxin combo., he added doxycycline to the regimen. That is suppose to boost the biaxin as well as treat some coinfections. He said I also had a choice of IV Rocephin. I decided to try the doxy first, then it I don't feel better, in January we are going to go to the IV. So, I just wanted to let you know, although everyone says that Dr. D. uses only two protocols, that is NOT true. Maybe he did that in that past earlier years, idk, but it is not that way now. I am living proof and so is my friend that goes to him, she has been on 5 or 6 different abx, etc. I think he tries the biaxin combo at first (then the tetra.) for the first few years and then goes from there and changes it up. I guess alot of people get better with that combo so if it's more successful than it fails, I understand why he does that.
He said if I don't get better with either one of these protocols that he will take me off the abx. completely because if its chronic and neurological, which we know it is, I will most likely have it forever. He said people sometimes have to go off the abx and they live and function ok. I guess if the abx aren't working then I need to be off them, right? This kind of makes me feel better thinking I am finally going to be off all the abx and give it a good trial run to see how I am going to feel and react. I'm so tired of herxing all the time...It's kind of scary, too, because that means my help is going to be gone... I guess at that point, after the Jan. trial of IV, I will go off everything, see how I feel, and then go to another doctor if I'm still sick all the time. Dr. D said basically if I was going to improve on the abx I would be better by now, not worse.
Ticker, I would love your input, although I am figuring that you prob. think I shouldn't go off the abx so soon? I am wondering the same thing. How long did you take abx and are you still on them? At that point I will just have to go to another LLMD. For now, I'll try the doxy and IV and go from there...
I hope whoever is reading this is having a good day and feeling better! Have a wonderful weekend everybody!
p.s. Hey Itsmylife....I totally forgot to ask Dr. D about donating my body to lyme research! We talked about so much that my brain was so confused and foggy that it just slipped my mind...my life story these days!
I missed you by a week at Dr. D's office. I had found that after 2 years of Biaxin/Plaquenil I was kind of plateauing and not getting better or worse.All brain function is working,but still had twitching and some scattered nerve pain. I decided to go off my meds seeing I was going to see Dr. D in a few weeks. After 5 days my knee pain,neck pain and shoulder pain came back! I got scared and went back on the antibiotics. A week later I got a yeast issue and decided to go off of them again (maybe it wasn't as bad as I thought,I told myself) Not only did the twitching intensify,but my throbbing eye nerve started pulsating after almost 2 years! A nerve along my shoulder also started pulsating constantly!!! I am so freaked out that I could deteriorate so quickly. I always thought that at worst, I may have to live with the twitching but to lose 2 years of progress after such a short time off ABX????
I'm even more freaked out to read that he said if it's chronic it may never go away??? I saw that my chart said "chronic lyme". It's definately in my nervouse system too. I hope they don't ever give up on me,because I will never accept having to live with this!
I'm going to see an accupunturist in Quincy next week. My friend speaks very highly of her and says she will go to the ends of the Earth to try to fix this for me and knows lots of knowledgeable people.
She ( the accupuncturist)just sent me a letter telling me about a good friend if hers that cured his wife of an agressive Lyme with Chinese herbs.I'm really excited and filled with hope again. Dr. D's nurse says that accupuncture has been very helpful for lots of their patients(she's not to keen on the herbs though,they can interact with the meds).Anyway, I switched to the Tetracycline and herxed for the first time in a long time,so hopefully I kick started something.Maybe taking a brake tricked the bugs,then I whacked them with a new killer!
I'll let you know how it goes after next week.
I've been wondering how you've been!
I'm curious at what Dr. D wll tell you, since you've been on the abx for about 2 years. I was really shocked when he said that I would go off of them completely since I don't feel better now than I did in the beginning and more or less, that's that. I felt hopeless when I left. I was thinking, oh no, NOW what will I do or how will I get help? Is this just it? No more help for me? Maybe thru his experience he's found that people that don't get better by now, hardly ever do?
At least I have the doxy to try, then the IV Rocephin before my chances run out. And after I stop the abx, I wonder if I have a bad relapse if he would treat me again? Oh gosh, I hope so...
That's crazy how quickly you felt bad again after stopping your abx. and then to get that twitchy, throbbing eye thing back! Is it still there?
Good luck with the accupuncture, let me know how it goes. I hope it can relieve you of some of your pain.
Please let me know how your appt. goes next week, I will be waiting to hear your report! Good luck to you
Wow- I am so thankful for all this info! Confused But thankful. I am really glad you updated me Lymesgal! and you too Mesmall!. It is good to know Dr D. does use other protocols. On the other hand, I do not like the thought of giving up if the abx's do not work. Dr. P in CT just gave up on a friend of mine with Lyme- he said the same thing- I do not know what to do to help you anymore- after 2 years.
I was on the Biaxin adn Plaquenil but my body reacted within 14 days so I started Tetracycline early Sept and I see no difference. I feel like I continue to progress into more illness at the same rate as I would if I was doing no treatment at all.
The thrill of having a diagnosis has definitely worn off. Please keep us posted on Dr D visits everyone- My next one is early November.
Hi lymesgal. I do not understand this doctor saying if you are not better he will stop the meds because you will likely have it forever! This would not instill trust for me. A good friend of mine saw him and when she was not improving he told her there was nothing left to do. She found out she had two co-infections. She wasted a lot of time with ineffective treatment.
As everyone knows, I do not recommend this doctor for many reasons. One reason is that he does not test for co-infections. I know these tests are not completely reliable, but getting them is a good place to start. Out of all the Lyme doctors, I know of only two who do not test for co-infections. Testing for them allows treatment to be tailored for the infections you have which makes it more efficient.
For instance, if you have Babesiosis, neither Doxy or Rocephin would work for it and you would likely get sicker. The same is true if you have Bartonella. As I have posted before, I had four co-infections. If I had not been tested for them and treated them first, I would not be here now.
I would recommend getting another opinion and getting tested for the co-infections.
The pulsating eye nerve and shoulder nerve went away after about 9 days on ABX,which was a releif.It took months the first time. Dr. D's nurse gave me no indication that they were giving up on me,just that it wasn't time yet for me to go off Abx.She said sometimes it's good to go off Abx for a while because the Lyme bugs "forget".(pulse therapy?). obviously the abx are doing something,because I'm better when I'm on them.
Zandvoort- The first time I did tetracycline I felt nothing either.I went on it last year for 4 months. This time though,I got the shivers, a weird sore on my tongue the size of a dime(It looks like the skin peeled right off,like I licked a frozen pole!!! I'm felling better now. It always seems like 5-6 days for me and I herx on new meds.
Aimiloo I think if it helps you, you should go back.
I agree ticker, but what I went for in the first place, the pain in my hands and when i'd wake up with them cramped and claw like every morning has gone away. I haven't had that since treatment. I do get the swollen hands and joints on occassion, but not like I used to.
I'm just curious if it might help me with any of my other issues that i'm struggling with now. Mostly the overall joint pain and exhaustion. I have an acupuncturist a block away from work-so I can't use the excuse of not being able to get there!
I know you are right, we need to be tested for co-infections....I tried but he didn't budge on getting me tested. He said the one co-infection that I it wouldn't treat (which I can't remember which one he said) I would know if I had it anyways because it is a blood disease and it would have showed up. I didn't believe him for one minute but I didn't want to make him mad cause he, at the moment, is all I've got! Then he tells me he's basically giving up on me anyways...
I will get another opinion, go to another doctor, after I try out the IV rocephin. That's the last attempt. I doubt if I didn't get better on abx, that the IV probably won't help either. This is just SO depressing! I can't believe this is the end of the road for me, I'm going to keep trying and trying and trying before I give up on this horrendous disease! I'm just sick, it makes me sick at my stomach.
Dr. D said that if it wasn't the lyme that was making me sick, it is something else that hasn't been discovered yet. At this point I am thinking, WHATEVER!
Dr D said the same thing to me- if not Lyme, not discovered. He refused to get me tested other than Quest which only saw Band 58! I am not sure I would show on any Western Blot, however, becuase I was on Antibiotics for 9 years until 18 months ago and I hear that would have supressed my immune system when I probably got bit.
It is so hard to know when to stay with what you have and when to move on. Unless, of course, your doc tells you he cannot help you anymore. To me, that just means THAT doc. I woulkd never think NO ONE could help me!!!!
After 14 days on the Biaxin and Plaquenil, I got a fever, major stiffness and congestion. Also got hives on my whole body, starting from my trunk out in about 3 hours. On Dr D's orders, I went to my internist who did a CBC with diff?? and the results indicated I was having an allergic reaction. Dr D switched me to Tetra. I was not sure if I was herxing. It was aweful that I had to stop when I was not sure but I did not want an allergic reaction to blow up in my face either. The rest of hte sickness I could have gotten from my son who was similarly ill about 10 days earlier.
lymesgal, I am not a doctor but I do not believe it is true that if you had one of the co-infections it would show in other blood work. Many people who have Lyme and/or co-infections have normal blood work.
There is more than one co-infection that the meds you metioned would not be effective for.
If I were you, I would not waste any more time. If you do have co-infections, the Rocephin will not be effective. The sooner you get properly treated the better.
I would not want to see a doctor who says there are no other options, but everyone must do what they feel is best for them.