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pamyla

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Everything posted by pamyla

  1. Hi Amy, That is a good question. It's often really difficult to determine if you're feeling badly from killing off the lyme, or if other stuff is just acting up. The one way I can usually tell it's a herx, is from the pain and inflammation. I don't have that normally, but when I went on doxy I could barely turn my neck for the first couple of months. Now, with the other symptoms, like fatigue, palpitations, etc. it's just really hard to tell. I usually just try to rest more, which is good for both herxing and pots As for diet, it's really important to stay on the anti-candida diet while you're on antibiotics. My current doctor also has recommended I eat a lot of vegetables, raw if possible. And, because I'm having trouble keeping weight on, I try to eat a lot of protein as well. What is everyone else eating? In the past I've tried nystatin and diflucan for yeast treatment. This was long before lyme treatment however. Right now I'm trying to keep the yeast in check with diet and herbal supplements. Hope you start feeling better soon! And go slow with the treatments if you need to. Pam
  2. Hi Lauren, That is great news that you are feeling better! I know lyme can really mess up your hormones, so maybe the BC is giving you something you need? Thanks for sharing your success - I'm about to start taking some progesterone cream myself, and I've been a bit nervous about it. Here's hoping for more energy as well Pam
  3. 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
  4. 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
  5. I now use only sea salt in my house. Since it has trace minerals, when you eat a lot of salt I think my electrolytes stay balanced. Plus, I think it just tastes better I've gotten my husband hooked now because of that I get my salt from Trader Joe's. On the cheap end they make a big orange container, probably about $1.50 and it will last for months. Downside is that it sticks together when it is humid out. Then sometimes I splurge and get the big salt crystals that come with their own grinder. A little more expensive, but the stuff tastes really good. Besides food, I usually sprinkle some sea salt in the water I drink. Seems to work just as well as gatorade for me. Pam
  6. Hi again, no problem, ask as many questions as you want I think I was put on plaquenil for both pain and babesia. Gotta love those multi-purpose drugs Now that the babs is supposedly gone, I'm still on it to keep the inflammation down. I've also heard that plaquenil can help the antibiotics penetrate better. So, watch out cause that could mean stronger herxes. I think that might have been what hit me at the beginning, but who knows for sure - it's so hard to tell! In the long term though I think it made it better, as it keeps the pain in check. You sound as sensitive to the drugs as I am. How is the malarone going? I was barely able to tolerate the mepron. I had weekly liver checks and my enzymes kept elevating even when I was taking 1/4 tsp every other day. Awful stuff! For plaq, I think I started on half a pill every other day and slowly worked up from there. I think the pills are 200 mg each? I've had no issues breaking them in half, although they taste awful Taking at dinner might be a good idea to start with. See if it makes you tired, like it did for me. By the way, are you taking the name brand plaquenil? My doctor says generic doesn't work well. Too bad cause it's expensive! That's great about your eyes! Keep me posted on how you do with the plaquenil. Pam
  7. Hi Emily! I've been on plaquenil for about a year now - for lyme/babesia treatment. At first I had the worst time with this drug. I'm usually an insomniac but I couldn't keep my eyes open and I just felt really dazed. But it slowly got better and within 2-3 months I was up to the full dose. And, I do think this drug has helped me a lot, so hopefully you'll do well on it too My babesia is showing negative on my lab tests now after taking a course of mepron, and then clindamycin/plaquenil. So the clinda/plaq combo is what finally got rid of it for me. I wish I could say I'm doing as well with the lyme treatment..... Through it all I think my pain has always been fairly controlled and tolerable, and I'm sure the plaquenil has a lot to do with that. I typically take one pill with lunch and one with dinner, and haven't noticed any stomach issues. Working up slowly is what I did also, as my body took so long to adjust. Did your doctor tell you to go for eye exams every 6 months? If you have any other questions, let me know. Pam
  8. Hi Jacquie, Sorry to hear about the stomach problems. I can definitely relate, been having trouble at least weekly for the last year (ugh!) I also seem to get in moods when I am constantly hungry and could keep eating, and then other days I can barely force myself to eat. It's definitely a good idea to see a doctor about it, to find out what is going on. You never know, you could have something going on in addition to pots. My doctor has recommended that I take digestive enzymes with each meal, and I think it is helping. I'm not digesting my food well at the moment, and I especially have trouble with raw vegetables. And I agree with the others on yogurt, ginger and small, frequent meals. Hope you feel better soon! Pam
  9. It's on at 10 pm EST - Primetime Medical Mysteries on ABC Pam
  10. Hi Pickledfairly, One other thought - have you been tested for Babesia? Night sweats are one of the most telling symptoms for that. I bring it up because while I had many negative lyme tests over the years, no one ever thought to check me for babesia until recently. On a good note, after going through about 8 months of treatment, my night sweats have gone away Anyways, just something else to consider. Hope you find some answers! Pam
  11. Hi, That's great that you found something that is working for you I'd be curious to know more about what you're taking. I've been taking undenatured whey protein for years. I tried it at a suggestion that it could help improve energy. While I'm not sure it helped in that regard, I noticed it cleared up my skin. Over the years I've stopped it a few times, and within a few weeks I can always tell a difference. Are you taking whey protein, or a different kind? Thanks! Pam
  12. Hi, wow, that sounds like quite an ordeal I have the same issue with work sometimes. When I'm pushing hard to get through a deadline I'm usually ok, but very soon after I'll have a crash. My pots doc said it's probably because during the work my blood pressure raises enough to get through it. But when it finally lowers I usually crash because I've been overdoing it and my body is exhausted. I also pushed hard in Dec to meet end of year deadlines and then didn't feel too well over the holiday break. And now I'm starting to normalize again and it's time to go back to work Hope you start feeling better soon! Pam
  13. Hi, I'm sorry to hear you're feeling so badly I know bone pain can be symptom of lyme disease. I used to have a lot of pain throughout my spine and neck - not fun! Taking epsom salt baths used to help me with the pain somewhat. That and lots of pain relievers....plaquenil was probably the most helpful. I hope you are able to figure out the cause, and that you feel better soon. Pam
  14. Hi ArtC, Thanks for the good snack ideas Do you get those at a special store? I'm glad to hear you're feeling better. I'll be in the same boat as you with not eating fruits and sugars - gotta make sure I keep the yeast problems in check. It is interesting that so many with POTS also have the gluten intolerance. Makes me wonder which one came first Thanks again for all the advice! Pam
  15. Hi Deucy, welcome to the forum Sorry to hear you have been having issues with work - pots is hard enough I'm about the same age as you, but was diagnosed with pots 8 or 9 years ago (wow time flies!) When I was first diagnosed I fought really hard to keep my job, but only succeeded for a few months before I had to give it up. This was really tough at the time, as I felt like I was giving up my independence and wondered if I'd ever be able to come back. I was out of work completely for about a year and then I started back part-time, eventually going back to full time. During my break, I not only switched jobs, but switched careers - which was a good thing. I've luckily been able to work full-time for the last 5 or 6 years now. For me, I needed to give it up for awhile and just rest. I'm not very good about that - I was your typical overachiever so I felt like I always had to be doing something. But the rest was exactly what I needed in order to get better. While I still have issues, I am a lot more functional than I was at the beginning - so don't give up hope - it definitely can get better! That sounds like a big headache that your boss is not being supportive. And, as my husband just started back to school, I understand what it's like to be the breadwinner. That's a lot of pressure when you're not feeling well.... Don't know if this is possible in your situation, but have you looked into FMLA? I'm unsure of the specifics, but doesn't it allow you to take up to 3 months off, with your job being held for you? Another thought, have you spoken with an EAP counselor - maybe they would have some good advice. I hope your health and work situation get better for you. Pam
  16. Thanks guys! Hopefully once I get in the routine it won't be as bad as I'm thinking now Hard to think about dieting when it's so close to the holidays! I'll start shopping for this diet after Xmas I think I recently did some testing for parasites, which also looked at a couple of the big food allergies. So I came back allergic to egg, soy and gluten, and my doctor has instructed me to cut them out. I did the testing because my lyme treatment has plateaued in the last few months and my doctor things something else is going on - which needs to be taken care of before my body is able to successfully fight the lyme. At the moment we're not sure what the issue is, and until we figure it out I'm not making much progress unfortunately. It's frustrating.... Back to food - those peanut butter chocolate chip cookies sound good And I'll have to look into that gluten free soy sauce. I am a sushi addict and would hate to give it up! Thanks again! Pam
  17. Hi all, I am bringing this post back cause I recently found out I need to start a gluten free diet. Thanks for all the good information I must admit I'm still feeling a little overwhelmed with what I can and can't eat ... Since I'm taking antibiotics for lyme I've been trying to hold to the anti-candida diet already - although I keep cheating with the bread (guess that really needs to stop) Additionally, I am also allergic to eggs and soy and need to cut those out as well. I was going through my food yesterday and almost everything I have in the cabinet has either gluten, soy or egg products in it - So, my questions - What do you eat for snacks? How about for breakfast? How do you manage going out to eat? And where do you shop for food? Can you still get most things from the regular grocery store, or do you go to a specialty store? I'd appreciate any easy recipes you can recommend to me as well. I'm not much of a cook, but I'm willing to try Thanks, Pam
  18. Hi, I've had Raynaud's ever since I can remember, long before I ever had trouble with pots. It could be that the pots does make the symptoms worse, but it's hard to say for sure. All I know is that my hands and feet are always like ice, and they hurt when it is cold out or when I touch something cold. A couple of years ago I also developed a rash on my legs, livedo reticularis, which is some form of vasculitis. I get these lovely little spider web looking veins on my thighs, which occur when the veins spasm. Not pretty Anyways, I mention it because ulcers can develop from it. I also have lyme, and on a good note, as I have been treating the lyme my vasculitis symptoms have been improving (yeah!) So, in my opinion, it's important to figure out what is causing the symptoms, because you never know - it may just be treatable Hope you find some answers, Pam ps - I wear compression stockings all the time and don't have any problems.
  19. I had one a couple of years ago, and aside from the site of injection being sore for a few days, I had no problems. I don't remember it affecting my pots symptoms at all. Pam
  20. Are you feeling any better? I know the first days of antibiotics can be rough! I had a very hard time when I started on plaquenil and biaxin. I had to take an incredibly small dose and work up. Makes me wonder if pots patients are all extra sensitive.... Hang in there, Pam
  21. Hi Jacquie, I've never been to Costa Rica but I hear it's beautiful. This past summer I did go down to the Dominican Republic though, and it was wonderful. The flight wasn't bad at all. I was a little nervous about the airport, but it was ok. I usually bring my wheeled carry-on bag and if I have to wait in a line I sit on it. I've never really have any issues with the plane ride, just drink lots of fluids. Also, weirdly enough I felt really good when I was in the Caribbean. My doctor said she's heard other patients say that as well, and said something about the proximity to the equator having an effect. Who knows - maybe it just feels good to be on vacation After my trip I'm often more tired than normal for a few days, but in my opinion it's worth it and I'd do it again. It's always a great mood lifter Hope it works out for you. Take care, Pam
  22. Hi everyone! I got my t-shirt in the mail yesterday and it looks great!! You guys did an awesome job with this! Can't wait to wear it I'm thinking this will be a helpful thing to wear anytime I go to a new doctor Have a great weekend! Pam
  23. Hi Linda, I saw an alternative doctor for a few years who I feel was helpful. He worked with me on supporting my adrenals and thyroid, and on getting rid of a candida problem. I put all that in the category of improving my overall health, and I did feel better overall, but I wouldn't say it specifically helped my POTS symptoms. With that said, my doctor never said he could "cure me", and I'd be very apprehensive hearing that from any doctor. I think when it comes down to it you have to really trust your intuition - if you're calling the doctor and telling him you're nervous taking the supplements, I think the doctor should have adapted the treatment plan to your individual situation. Just like any other speciality you're gonna find good and bad alternative doctors. I've heard of the spit test for candida, but I question how valid a test it really is. It seems to me that it would only be picking up candida in your mouth, and could vary greatly depending on what you had recently eaten. But, I don't really know a lot about it....so don't take my word for it I think candida was detected via a bloodtest for me. Anyways, if you do think you have a candida problem it's definitely worth treating it. I felt a ton better from doing the diet. If you haven't already, William Crook's 'The Yeast Connection' is a great read, and you should be able to check it out of your library. good luck, Pam
  24. Hi Malosp - That is wonderful!! Thanks so much for sharing your success I've had a couple of hard months from treatment, and it is great to hear that it is helping you so much! Pam
  25. Hi Sarah, That's a good thought and definitely worthwhile checking into. That would be great if sedation is available for this procedure. Thanks, Pam
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