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04/28/2008 06:46
jaime1978
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i gotta say quick too, the rheumy, the good one..amazing, they did a study on hundreds of fibro pts and same results...amazing, and get this, my friend has a flyer from the 90's about fibro, on it it actually says "fibro is thought to be due to a bacterial or virul issue, but docs aren't sure"....uh, duh..but yet they don't go further with it... so glad this guy walked in to that conference!
Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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04/28/2008 08:41
ConnieD
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yes, Jaime, it's maddening ,isn't it? I have seen on the FM site, many people complaining their lymph nodes in neck are swollen and tender, but docs aren't checking for infections. I had the same problem. I kept telling my docs, it hurts to touch my neck right here, it's soooo sore. The docs didn't respond. Isn't that nuts? That seems like medical school 101...when lymph nodes are swollen and tender, it's an infection. I didn't know any better, that's supposed to be their job. We have a real problem in that lyme is so underdiagnosed, really.

Thanks Tom for getting back about the balouke. Do you think it was helpful for your inflammation?

So glad your back, Jaime

Connie

Please do not take anything I say as medical advice. I am not a doctor

~Lyme Disease Support Group Leader~
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04/28/2008 09:24
tomro62
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Connie,

I can't say if the Bolouke was doing me any good, really. For this reason I stopped taking it because the cost was so high. But let me explain....

My doc, God bless him, takes a low and slow approach with Lyme treatment in order to prevent a big Herx. At the same time though, it seems that it doesn't do much to get you better fast enough...at least that was the way with me...you know, different people reacting in different ways, which is so true of Lyme treatments.

His approach is low dose antibiotics, with big time anti-inflammatory medication and supplements. He started me on Benicar, 20mg, 3 times a day. Benicar is a blood pressure drug, with mostly anti-inflammatory properties, along with some natural supplements for inflammation. The Ultra InflamX was part of this as well.

They (my docs) attack the inflammation because it is one of the biggest hiding places for Lyme. Fibrin lines the walls of the blood vessels and Lyme burrows in and sets up shop. By reducing the fibrin, using anti-inflammatory meds and supplements, the Lyme are exposed to the bloodstream and the antibiotics. This is the first step to killing them off that my doctor takes.

As I said, for some reason this approach did not work for me. I just got sicker. In January of this year I demanded IV antibiotics in an effort to attack hard, damn the Herx reaction...which I really haven't had bad at all. But again, some people do - poor Jaime - and some don't.

Oh, and by the way...my neck...absolutely the worst pain I have. Lymph nodes are tender as can be. I can point to the specific pain spots, easily. Believe it or not, two spots have eased way off since beginning IV treatment,and my jaw is not quite as sore and stiff.

Tom

I am not a doctor, and nothing I say here should be taken as medical advice of any kind.


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04/28/2008 09:53
ConnieD
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Interesting theory about the fibrin. That's new information for me. However, that's just one good hiding place. There are many others. I've read that lyme loves the collagenous tissue, thus they love our brains (I'm definitely a fathead ) Lyme gets everywhere and if it's been there long enough, it has had time to build a nice, big colony that might take awhile to obliterate.

I've heard of other natural ways to decrease inflammation. One that I read about, but didn't do to a great extent ( I loved some of the foods too much, I can be weak)was diet for blood type. My ND suggested I try it. I read about it and avoided some of the foods, but honestly, I wasn't compliant on this suggestion. I got better anyway. There's only so much I am willing to sacrifice. Tomatoes were not one of them. They can be inflammatory for anyone....oh well, for me ,a tomato and cucumber sandwich is hard to beat in the summertime.

I'm so glad you are seeing some improvement. It sounds like you are in good hands tomro.

Please do not take anything I say as medical advice. I am not a doctor

~Lyme Disease Support Group Leader~
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04/28/2008 11:32
tomro62
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Connie,

Yes, the Fibrin is just one of the many hiding places. My docs attack that first because inflamed blood vessels are a source of pain, so they try to get you some quick relief if they can.

I am being treated for the neuro effects of Lyme as well, although my knees have started to become a source of concern for me. When I've been on my feet long enough they have started to swell slightly and take on a red tinge. I'm hoping that's about as bad as it will get.

I try not to talk to loudly about feeling better, because I know if those little germies hear me, they'll get upset!

I am not a doctor, and nothing I say here should be taken as medical advice of any kind.
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