AJVDK Posted February 10, 2007 Report Share Posted February 10, 2007 (edited) Hello All,Well I am back from the LLMD! I have Lyme?s Disease. I am not sure if this is good or bad. It?s good as it?s the cause of my POTS, NCS/ NMS, Low Blood Volumes, Heart Problems??. The bad news is for almost 10 years it went untreated until this last year when my family doctor started treating me. Now the doctor said the reason why I got worse in the beginning was a ?herx reaction? to the meds, but the reason I only saw an improvement after that for a while was that It can even out, and that I needed stronger meds. So they will be starting my next week on IV antibiotics. (Good thing I have a PICC already)The nice thing is that is doctor knows about POTS, and that I am not the only one that has POTS and Lyme's in his office. He also believes that I also have a coagulation disorder, so next week I have to have a hole lot of blood work done to find out about that. So I guess I am finally getting some answers.The down side is there were no real answers to if I would get better. It was more likely you could get better maybe 20%, or more, but we really don?t know as they believe I have had the lyme?s for 9-10 years. So I guess that is where I am at.So now I am a in a LYME-POTs HOLE. I am hoping this new treatment will help; the down side is its going to get worse before the improvement starts!Thanks for all the support! Edited February 10, 2007 by MightyMouse Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted February 10, 2007 Report Share Posted February 10, 2007 Hi Amy, sorry that the news wasn't better for your health future. It does sound, though, like you have a doctor who is really interested in understanding your health and helping you be at your best.Nina Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted February 10, 2007 Report Share Posted February 10, 2007 Hi Amy,I'm glad you finally saw a LLMD! Although don't give up hope! I've heard of people who were sicker than we are who made great strides after being treated for lyme. Not everyone makes full recoveries, but almost everyone improves after lyme treatment. At least that's what my LLMD told me. I'm glad you're starting IV antibiotics, and hopefully they'll make you feel better!Hugs,Lauren Quote Link to comment Share on other sites More sharing options...
DancingLight Posted February 11, 2007 Report Share Posted February 11, 2007 Amy,Thank you for 'reporting back'.I was just wondering how the LLMD diagnosed you? Did you already have positive bloodwork that he based the diagnosis on.I hope you will be able to tolerate the abx...and not herx too badly.I agree also with DizzyDame--so many people with Lyme have 'resurrection stories'--so don't give up hope! But, I know it's hard!Emily Quote Link to comment Share on other sites More sharing options...
AJVDK Posted February 11, 2007 Author Report Share Posted February 11, 2007 Emily,He went off my medical records, exposure, when I began to get sick, looked at everything I been dx with since 97. He even said that he has one other case in his office just like mine. That she has POTS, and even had the ablation, pacemaker, and that, we both even have sphincter of oddi dx. As for the blood test again he said the fact that I been on doxy for 5 months now, and that I am just getting over the blood infection with all the IV abx that I am going to show a negative test. He also went off how bad of a herx I had while on the doxy, and that then I improved, and that it leveled off, (I guess with all this it was enough for him) It was a 3 ? hour appointment he listen, and asked so many questions, and wanted the dates, and what health conditions happen first. So the lyme?s for me started in the autonomic nervous system, and then moved to the nervous system from my understanding. I was overwhelmed with all the information. I am still learning all about this, my understanding from the appointment, the longer you have it, and the move damage done the harder it is going to be to treat. I am really worried about a Herx on the IV abx, as with the blood infection I had I had the worst headaches, and I was in the hospital so the where able to give me extra fluids, and pain meds. Now I am going to be at home on the IV meds.Have you been on IV abx? If so how did it go? What are your thoughts about IV abx? I am really worried about everything right now, and I hope the treatment will work, but I don?t want to put all my hope in it and get depressed you know. This summer when I was told I had Lyme?s and started treatment I thought finally?.. and things didn?t get better like I thought they would. I am hoping that now under the care of a LLMD that I will get a treatment that will improve my quality of life. I would love to go back to work one day?.. but if not just be able to keep up with my son! Quote Link to comment Share on other sites More sharing options...
DancingLight Posted February 11, 2007 Report Share Posted February 11, 2007 Amy,I'm headed to bed, but saw your post so wanted to respond before my Lymebrain lost track of it! It sounds like you had a very thorough exam and the doctor really took everything into account. The only thing I 'disagree' with that he said, is that from my understanding, you are MORE likely to have a positive test as you progress with treatment. Many people with chronic Lyme actually test negative, and that is the tricky part of the diagnosis and what makes it so controversial.I am actually getting ready to do another blood test from Stonybrook to see if we get a stronger positive now that I have been on abx for a while.As for abx., I am very conservative and I don't want to sound like a broken record, but I strongly advocate for taking things slowly and not overwhelming our bodies. That being said, each of us is VERY different.I could not even tolerate a PICC line when I needed it most. I herxed and ended up in the ER on a very low dose of Doxy and we had to start all over again. I've mentioned this before I think, so don't want to repeat myself. Basically, my docs see IV abx as a no go for me b/c I just TOO SICK to tolerate them. Weird, but it's the case. It's hard b/c while I don't like to 'compare' suffering, when I share my story I think it is important to remember how long and how sick I have been--even my doctors are sort of blown away...so I don't want others to make decisions based on my crazy body.As for me, I re-started abx at 1 minocycline/week back in May of 2006 and am just now at 3x a week. I also take 1 pediatric dose of Malarone a day and just started a low dose of Plaquenil.You must choose the path that is right for you. We each walk in our own shoes. I wish you the best and hope for healing. Remember, you have been sick for a long time, and we cannot heal overnight. Patience is all we can hold onto right now!Emily Quote Link to comment Share on other sites More sharing options...
DancingLight Posted February 11, 2007 Report Share Posted February 11, 2007 Amy,I forgot to mention that if you really want the gory details and why/how I've made the decisions I've made--feel free to check out my blog atwww.adancinglight.blogspot.comEmily Quote Link to comment Share on other sites More sharing options...
corina Posted February 11, 2007 Report Share Posted February 11, 2007 hi amy,i think it is a plus to at least be sure that you have Lyme and be treated for it. i hope treatment will help you lots and your quality of life will improve!!!keep on hoping for the best results!!!corina Quote Link to comment Share on other sites More sharing options...
pamyla Posted February 11, 2007 Report Share Posted February 11, 2007 Hi Amy, Glad you were able to find some answers from the doctor. I also went 8-9 years without being diagnosed and therefore without treatment. I've been in treatment for about a year and a half now. During all that time I've made a lot of progress, but when the bad days come it can be hard to remember that I think it's really important to keep a positive attitude and believe that you can improve - even having lyme for such a long time. I know in the last year I've been able to stand longer and have started to do a small amount of exercise again (of course that's on my good days!)I also have problems with blood coagulation, and have just started treatment. Maybe I'm confused, but I thought it was because of that that my doctor wouldn't consider IV antibiotics for me. I'm more like Emily in that I need to go very slowly - but everyone is different in how they react. I hope you can tolerate them so you can feel better as quickly as possible Hang in there! And please let us know how it goes.Pam Quote Link to comment Share on other sites More sharing options...
AJVDK Posted February 11, 2007 Author Report Share Posted February 11, 2007 Pam-OK this is all new, but I guess the reason IV abx are going to be used are oral evened out after a few months, and with all my stomach problems he said it would be better to go IV as long as I can handle it. Does that sound right? I want to make sure I am not moving to fast! As for the blood coagulation, I am having that test done this week, he said if I have it ( with he is pretty sure) I will have to go on blood thinners. (injection of heparin, or they is a new form the are tring he said you put it under your tong.) Like I said all new to me so any info you have I am all ears!Emily- Wow, you have been thought alot, I am hoping that I am able to handle the abx! again thanks for the support!Thanks for all you support, I still would not even know about Lyme's if where not for this forum. This sumeer a few of you told me I should get tested, as POTS could be a cause of POTS, and that I sounded like I fit into Lyme's here 8 months later, I have been told fianlly by a LLMD that I do have Lyme's and it was the cause of everything!Amy Quote Link to comment Share on other sites More sharing options...
pamyla Posted February 12, 2007 Report Share Posted February 12, 2007 Hi Amy, On the blood coagulation, I've heard a lot of talk about nattokinase and Recht-regulat, as natural alternatives to heparin. My doctor was going to put me on nattokinase, but since I have a soy allergy it was a no-go Instead I ended up on Persantine, which I'm having trouble adjusting to at the moment. (not that that is unusual!) Anyways, something to look into to avoid the injections, although under the tongue would be much more tolerable Pam Quote Link to comment Share on other sites More sharing options...
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