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Lyme dr. is disappointed that I'm not responding to any treatment. YOU AND ME BOTH, LADY.
And just generally seems confused. Really, you're supposed to be way good with a disease that's fucking sneaky and hides in different parts of your body so you can't eradicate it or at least have a fuck hard time kicking its ass back into remission.
So her ( Read more... )
And just generally seems confused. Really, you're supposed to be way good with a disease that's fucking sneaky and hides in different parts of your body so you can't eradicate it or at least have a fuck hard time kicking its ass back into remission.
So her ( Read more... )
I see a LLMD in CT now, Phillips. I used to see Cameron in Mt. Kisco; he takes some insurance, but not mine. He seemed skeevy to me, but other people like him. I had a really big medical issue that he couldn't get a handle on, so I left (to be fair, it took about 20 more doctors before I had some improvement...and it's not completely resolved). I might have to go back to him, because my current LLMD says we've exhausted all the possibilities for oral ABX, so now I need IV, and my current LLMD doesn't have a setup for IV, and Cameron does. However, I'm looking at some other LLMDs, because I want complementary treatment with the ABX and also someone who'll do pain relief modalities, instead of having to work with the mainstream chronic pain doc I use now (who sneers at ABX and tells me that she expects I'll be on narcotics for the rest of my life).
My current LLMD is big on "infrared sauna" for pain. I rolled my eyes when he suggested this, and asked, "And...how much does THAT cost?" "Oh, about $1500." And I'm sure that doesn't include installation, and am I supposed to add another fucking bathroom to my house to accommodate this? I might try joining the local racquet club which has a sauna, because they have a deal $40/month if you only use the club M-F 12-4. I can swing $40, and it's a way to see if the sauna does anything at all. I see your friend mentioned something similar. I know that I'm using icepacks for pain a lot, which neither of these freakin' LLMDs has said was a bad thing. Grr. I would not be able to work if I didn't have icepacks (I pack 'em in a cooler in the morning, and buy instant icepacks by the case to keep in my car when the reusable ones lose their chill). I would not be surprised if I've been doing *completely* the wrong thing for 2.5 years.
I've tried TENS for pain; very little effect for my pain, and doubt it did anything to the little lyme buggers. Also acupuncture was completely useless and made me feel more helpless to lay there for half an hour with needles sticking out of me, so it vastly increased my depression and anxiety. Also, acupuncture was friggin' expensive, and she wanted me take Chinese herbal medicine, basically a cup full of twigs and crap like that, for around $200 a month...and if I can't research it, I don't like to try it, and I'm taking a ton of traditional medicines with a million side effects already, and don't need more drug interactions that NO ONE will be able to figure out. She was not a Lyme specialist however, one of my mainstream doctors sent me to her. There's a guy Zhang with a Chinese protocol that people seem happy with. Again, I like to be able to research stuff before I stick it in my body.
I am doing Dr. Singleton's lyme diet now (low carbs, with lots of veggies and fish). Don't know if it's helping my lyme, but I lost 10 pounds in two weeks, and feel good, although that might be the latest round of oral ABX that I'm taking to prepare for (another!) surgery next week. If you are eating sugar, there does seem to be a lot of agreement that that's not good for lyme, and low gluten, low carb seems to help a lot of people. I have some Dreamfield's pasta a couple times a week so I don't get depressed from the lack of comfort foods on this diet. Singleton's book is by far the best I've read, and your library probably has it. He has a lot of suggestions for supplements and coping. If you buy one Lyme book, that should be it.
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I've never heard of sauna treatments before but saunas in general make me feel dizzy and like I'm gonna pass out.
Is TENS the little electroshock for arthritis? All I've got for pain is vicodin but when its really bad, I'll take two and it'll barely take the edge off. I don't want to take more than that because it can fuck up your liver but at the same time, 2 reeeeeeeeeally doesn't help much.
I'm vegan so my diet is mostly beans, veggies, fruits, and carbs. I used to be a size 3 before everything happened! And now I gained fucking 30 pounds from doing absolutely nothing different. What would you get surgery on, if you don't mind me asking? I never heard of Singleton, why would his diet help lyme? I could cut down on gluten but I don't think I could ever eat a living thing ever again.
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I've had severe breast problems since the beginning of my Lyme thing. Either Lyme screwed up my hormones (which it can do, because it makes your thyroid act up, which screws up every other hormone) or it's the co-infection Bartonella (which I definitely tested positive for). I found a couple studies that say that Bartonella can cause "Pseudo-breast tumors", which pretty much is what I got (benign tissue overgrowth, or something, none of the doctors can agree). So they took out one big chunk last December, and now they're taking out another one on Monday. I've been really pushing to get a sample from my breast excision sent for Bartonella testing at a special lab. But my doctors are all like, "But Bartonella is cured by 2 weeks of antibiotics." Seriously, they're morons. All they give a crap about is cancer--I'm on my 7th breast surgeon, before I finally found one that would sort of try to help me, between rolling her eyes at the *hormonal* patient. But even my gyno admits that you don't usually present with *20* areas of concern in your breasts overnight.
My cat had Bartonella too, he was "highly" positive, and he died mysteriously about 10 months ago (about a year and a half into my saga). I got him tested as soon as I was diagnosed, because I saw that cats can be a reservoir. He was treated with 3 weeks of antibiotics. He never had any symptoms before he died, I just found him dead on the floor one day.
I do think you should check out that diet. I can't eat any soy products because of my boobs, but maybe you could come up a low-glycemic diet that's vegan?? Sugar is the big thing to watch out for, and it basically means you can't buy any prepared foods, because the lovely agricultural companies put sugar and salt in everything to make us addicted to their products. Also, if you eat a lot of wheat, eliminating that from your diet for a short period is worth a try, because, believe it or not, celiac disease can be confused with lyme.
If I end up doing IV, I may want to ask you about that...I think for me, since this has going on for so long, I'd be on IV for a very long time, which is very, very scary. I don't have family or a boyfriend, so I don't know if I can do this by myself.
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I've always had a fucked up thyroid so I really wouldn't notice lyme doing anything else. I have Hashimoto's syndrome so that it constantly fluctuates. So even before all this, I had to get my blood tested every 3 months. UGH THAT'S AWFUL THOUGH about the tumors! Seriously, that made me shudder. You win with the worst.
I don't know if I've been tested for Bartonella before but it sounds pretty common. That's awful about your cat, I'd be crushed when/if the beast ever dies. My dog has lyme too but shes good with just one round of doxy.
I CAN'T EAT SALT!? I DON'T NEED TO WALK, I NEED TO EAT DELICIOUS DELICIOUS SALT!
You haven't tried IV yet? I just got tested the other day and its STILL in my blood so I might end up going back on my third round of IV. How long would you be looking at being on it? I've been on it both a month at a time. The mid line hurts way more than the PICC. Because the mid line just a regular nurse puts it in in your house. The PICC, they do it at the hospital and they use some machine to find an exact vein so no ones repeatedly sticking you to find it. I barely felt that. Inside, it does hurt if you've never done it before. I could literally FEEL it in me and it was weird to lay on it too. Bathing you gotta wrap it in cling wrap and with a bag and do your utmost to not get it wet. That's awful you don't have people to help you though. I really feel bad for you, I really take it for granted being able to have my family and husband. I don't know what to say to that but I hope it doesn't come to that for you and wish ya luck!
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