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Well as for rignt now i am going to keep on going with the treatment. I have not heard back from the LLMD office yet. I called again today. There office is so busy. I am still feeling really wiped out. I am starting to think that I am not to be having this treatment. I have to have weekly blood draws, due to the doxy, so today while my nurse was at my house she need to draw labs. Well my PICC line will not draw back blood anymore. So she tryied to draw blood off my arm, then the hands after 3 times gave up, and said I needed to go into the IV Center at the hospital, to have TPA put in the line, so I went there and had the TPA place in the line waited the time the needed and still after the TPA was placed still no blood return. So they now sent me home with TPA in the line over night in hope it will open the line up for blood return. See I think I am doomed when it comes to a PICC. Then as I was leaving I got the worst headace, so then I ended up having to go for a shot for that. I am feeling better now but wow what a bad day. We where joking at the doctor office when I got my shot that is I didn't have bad luck, I would have no luck at all! Hopfully I will get a call back from the LLMD, and plan the next more, to stay on treatment, slow down, stop for a while........ But I am still here and kicking, and I am going to beat Lyme's one way or another, It's not going to get me!

Flop, I hope things start looking up for you soon. Heres a ((((((Hug)))))) From IOWA. Have you talked to a doctor about the POTS acting up more? Do they have any ideas? Hope thinks start looking up for you soon!

Sorry to hear about how you are doing. Sending you a (((((HUG)))))) and hope you are feeling better soon!

Hey All, Spring is coming, and what a better way to support Dinet then wearing a Dinet T-shirt when you are out and about. Also the T-shirt profits are helping fund the documentary on the various types of orthostatic intolerance. For more information on the documentary see Michelle's post: http://dinet.ipbhost.com/index.php?showtopic=7951 Again thank you for your ongoing support of dinet.org! Amy If you have any questions on t-shirt sizes and shipping please feel free to pm or contact me on the contact area on my profile. ( Don?t you all like the new upgrades! Go Nina, and Michelle!) Also WELCOME BACK SUNFISH!

Lois, My cardio order the PICC and fliuds, and then 3 weeks into wanted it removed due to risk of infection. My other doctor took over the orders, as the risk of infection at the time out wayed how sick I was and the improvement they saw. Now here the part that was not fun, I did get sepsis an I was so sick, the reason I was in the hopsital was I had two blood infections, and to make sure noting happend with the pacer leads, at one time the doctor talked about possablity of remove of the pacer due to the infection, later that was dropped as I was able to fight the infection with the abxs. Now I get weekly blood test to test for infection, and make sure nothing is getting out og line, plus now I check my temp. twice a day so is anything seem like I am getting sick I can get in, and but on a abx. As for your pacer I wish I had the trail by error, but after mayo changed my rate, my doctor was like Mayo knows what they are doing let just leave it there. So I am stuck at 70.... unless my heart is racing... Please let us know what you find out on Monday, and thanks for caring so much about me! It means alot! Thanks, Amy

Lois, You will have to let us know how you come out on monday. By chance what rate on the pacer did they think you should be at? I am just interested becasue the pacing at Mayo, in MN paced me at 70. By I somtimes think a high rate might be good. Why do the think 85 is too high? Have a great weekend!

Hey All, I am in a big pots/lyme hole. It?s odd how treatment for one can make the other so much worse?? So I am trying to fight though this but, I don?t know what to do. Do you stop the treatment for the one (Lyme) that could over all improvment your quality of life. Or due you keep going and hope things get better, do you but your body though the pain, fatigue, ect? in order to hopefully feel better one day. I called the doctor Friday and the RN said I have two choices to stop the IV doxy, for a week and try again, or fight thought it. She said the pain could get worse as it a ?herx? reaction. She said it a good thing as you are fighting the Lyme, but if it get to bad then its time to stop. How are we to know when to stop? I am so upset. I finally know what?s casing everything, and all I want to do is fight and get better, I kept telling myself finally this will be it, this will hopefully with this I will finally see improvements with the POTS, as 2 cadio?s have given up on improvement. I was like this will be it, treating the lymes, could hopefully help the POTS improve also. Now with this being late stage (or chronic) lyme?s what if can?t handle the meds?. I know others here are really having a hard time fighting both lyme/pots; I am so scared things will not get better. I know many of you told me to go slow, in yet my LLMD wanted to go with IV as long as I had the lyme, (they believe 9-10 years) and with the cardio problems being caused by the lymes, that they thought it was the best option to go IV for improvement. So now what?? I am not sure. I am going to call the doctor on Monday and talk out options, but I am worried. I just need to get better so that I can get back to work. I am waiting on my appeal yet for SSDI. Can you believe that it?s going to take 18-24 months? I really don?t get the system! Sorry for my long vent. I am just stuck at home, and don?t feel good and it just gets to you. Thanks for all the support!

Wow, I am confussed now! Sorry your doctor seem to be confused on Dysautonomia!

Thanks for all the imput, I am going to try the diet. When you all started the ABX did any of you have problems with really bad joint pain, neck pain, and the one that is a little worry about it my chest hurts. I think it more like the chest wall of my heart- but wouldn't that make since since the LLMD think all my heart problems are cause by the Lymes? Well I am off to do another round of the IV . You may think I am crasy but I think I feel worse after each time I do them, but I know I need them so I am going to try to fight though it! Thanks for all you support!

Melissa, I am so happy to see you posting! I hope things start looking up for you! I thought about you alot! When I was in the hospital with sepis in Jan. I thought my goodness, I can't beleive this is what you been going though. I wound not wish it on anyone. I feel so bad for you that you had to go thought all that, but I am glad to know what a fighter you are! You give us all hope, and let us know to all keep going! Glad to see you back around!

Sorry I am just getting to this! To me the run like a college t-shirt, like old navy if you have one of those. The t-shirts are Gildan Activewear, Heavy Cotton. They are 100% Cotton Preshrunk Hope this helps and happy buying!

Welcome Jenn! Nice to meet you, I hope you find lot's of new friends, and lots of info!

Glad to hear you are doing better! Hope things keep getting better!

Hello All, Hope this find you all feeling good, and enjoying your day. For those of you with POTS and LYMES, how do you know the difference between a HERX, and the POTS getting worse? Also for those of you with POTS and LYMES what diet changes have you made that you have seen improvement with? There are so many different books, and information on the web, I am not sure with ones to try? Well I started IV Docycycline yesterday. I have to infuse every 12 hours, and then also to the fluids for the POTS, so I am now stuck to the IV pole a lot. (But if this works it doesn?t matter) Today I am feeling very tired, worn out, and wiped out. I am sleeping least 12 hours now a day. I am hoping that this will get better with the treatment. Also have any of you tired fluconazole? The LLMD is starting me on this along with the IV abx. I guess this is to help with the yeast with the abx, but also they say helps with LYMES? Not sure thought I would ask. Well have a great day thanks for reading! Amy

Happy V-day to you too! Hope you had a great day!

Happy B-day Cardiactec!

I am glad the appoitment went well and that you found out some good answers! I hope the TTT will let them know whats going on! Thanks for letting us know!

I just wanted to say "good luck", hope you get some answers! Keep us posted!

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

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!

I am so happy for you, and that things work out for you.

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!