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[QUOTE=Bothrops]Hey everyone,
I have a question regarding treatment of chronic lymes. Has anyone here gotten better? I have been ill for 2 years and in that time I have noticed that all of you that were here 2 years ago are still here. Are all of you still ill? How long have all of you been on antibiotics?

I am sorry for asking the same questions over and over. If any one here could give me a straight answer I would stop. The FACT is that I have tested neg to lymes twice and Dr J has tested me on several more that I am sure I will still be neg. to. He wants to treat me regardless. I just can not see taking strong expensive antibiotics for a year and not feeling any different. Can anyone here please tell me why I should take a LLMDís word over a GP, IDD and a rheumatologist, who all say I have CFIDS and Fibro.

The reason I saw Dr J was to rule out lymes. It really blew my mind when he told me that he would probably treat me regardless of the results. Saying that is like saying there is absolutely no way to prove that chronic lymes even exist, similar to CFIDS and Fibro. Just because I am an outdoors person and have PROBABLY pulled more ticks off me than everyone in here combined does not mean I have lyme or any of the co-infections. My sister in law got lymes in NJ and she knew it a day after she pulled the tick off. She was verry sick and there was a bulls eye rash. I am not about to say that I donít have lymes but the fact is that you all are still here after extensive treatment. They say I have a good chance to overcome CFIDS in a five year period, if CFIDS is what I have. I would rather go without treatment for five years and get better than go with and still not get better for five years. One other thing, everyone is so skeptical of the lymes test, if it is neg. I could still have it and if one band shows well that means I have it. Who is to say that CFIDS/Fibro would not cause a couple of bands to show every now and again.

I really donít care what I have I just want to get better. In order to get better I have to now what it is I have. Confused? I am! What was it that made you all believe the Dr. who told you that you have lymes?

Derek[/QUOTE]

Derek, your post mentioned some critical things that should definitely be taken into consideration. First, you mentioned that your SISTER was bitten by a tick and got sick immediately and experienced a bulls-eye rash, correct? She is an extremely close genetic relative of yours so guess what that probably means? Her reaction to an infected tick could very well be exactly what you would experience had you been under the same circumstances. Remember that its not the organism but rather your bodies reaction to it that causes the illness. Believe it or not, genetics play a HUGE factor in how the illness turns out and the fact that you didn't get sick in the same way as her and don't recall a bulls-eye rash should be seriously considered.

Secondly, you were tested for Lyme Disease twice and both times they came up negative...out of curiousity, was your sister tested and did her results show up positive? When she was treated, did she promptly get better? What were her symptoms and did yours ever look anything like them when you first became ill?

I don't know your symptoms, but if you really have Chronic Fatigue Syndrome (CFS), then you are correct in saying that you definitely have a good chance of getting over it within 5 years...this depends a lot on the severity of the illness and how well you are managing it. In a lot of ways, I'm in the same boat as you...I was found to have a positive Elisa/Western Blot test and even though my symptoms looked much more like CFS, they attempted antibiotics on me for over 3 months and I didn't experience a single benefit from them. It was worth a shot but it just didn't pan out for me.

In my opinion, Derek, the reason why so many people on this board are still here year after year despite taking antibiotics the whole time, is because they may actually have Chronic Fatigue Syndrome, Fibro and/or an immune system dysfunction but don't know it. Be aware that LLMD's can easily convince anyone with vague symptoms that they have Lyme Disease despite negative tests and they don't hesitate to start antibiotics right away.

My advice to you is to attempt antibiotics (oral meds only!!!) if you feel you have to rule it out but whatever you do, DO NOT let any doctor bully you into thinking that Lyme is your problem and that its going to require years of antibiotics to treat...thats hogwash. Remember that in the world of medicine, if you push the diagnosis of Lyme Disease long enough, there is no doubt that sooner or later you will find SOME doctor that believes you have it even if you don't...see my point? Lots of predators out there...be careful. Like I said, I'm in the same boat as you so feel free to ask me anything and please search for my posts on these boards...I've discussed this issue hundreds of times before. Let me know what happens.
[QUOTE=deejavu]Hi Derek,

First of all, you did say Sister-in-law in your original post, so no brain fog there! If my bands showed 0, of course I would not take antibiotics unless I was in your sister-in-law's situation.

Sounds like Dr. J is being very thorough with the testing and you are right when you said you shouldn't jump to conclusions until your results come back.

Interesting when you said you took Doxy for 3 months and you felt better, that means something inside your body was reacting to the Doxy and 200 mg per day is a very low dose. Most people take at least 400 mg per day.

I believe that Stress alone is a killer when one doesn't know how to deal with it. I understand that you are worried and maybe you feel inadequate right now because you are sick and can't provide for your family. Sounds like you are angry too which you have every right to be, yes the system doesn't always work the way we want it to.

I asked my husband to leave when I first became sick because I couldn't stand the stress between us, that was my choice and I knew I would be losing his income and I own a house. But I chose to have peace and quiet in my life compared to his money. And I did feel so much better once I reduced my stress level. As far as money, I fought hard to get disability and I did get it which helps pay most of my bills.

I could have been homeless during those 2 years when I fought for disability but I found ways of making money to make ends meet including selling a lot of my jewelry and precious collectibles. One has to do what they have to do to survive.

Have you tried contacting a disability attorney? I think if you found the "right" attorney you would be able to get disability. You would need forms filled out by Dr. J. My attitude is what do you have to lose by trying?

I think if you got disability, it would reduce your stress level. I also suggest getting Meditation Tapes and/or Yoga Tapes and do that everyday. It really helps in making you feel calmer, and you may even sleep better. There are tools out there, one just has to find the right tool that works for you. I would definitely choose Meditation/Yoga over any drug to induce sleep as I believe those drugs are really bad for anyone. The tapes are not expensive and you can do them at home.

I am feeling better as I am on my own regimen of Jarrow's Probiotics and Colloidal Silver along with Doxy. I am also waiting for my Samento to arrive. I hope to see a LLMD soon and in the interim, I prioritize my life to keep the stress down, and do things to feel good about myself. As I said before, I believe that one has a choice about their attitude, and I always chose a Positive Attitude no matter how bleak life can become. I believe that "choosing" to be positive is half the battle in any disease.

Let me know if you have contacted a disability attorney.

Cheers!
Denise[/QUOTE]
[COLOR=Sienna]Interesting when you said you took Doxy for 3 months and you felt better, that means something inside your body was reacting to the Doxy and 200 mg per day is a very low dose. Most people take at least 400 mg per day.[/COLOR]Well actually I think it was the acidophilus because when I stopped, both the kidney pain and constipation came back but left again after starting the acidophilus.

[COLOR=Sienna]I could have been homeless during those 2 years when I fought for disability but I found ways of making money to make ends meet including selling a lot of my jewelry and precious collectibles. One has to do what they have to do to survive.[/COLOR]
What about all those people out there who have nothing to sell? You know being ill has completely changed the way I look at things. I use to look at the homeless as weak and giving up to easy, know I understand why they gave up. I use to respect the rich now I think everyone that has money got it from screwing over people and I have absolutely no respect for them. I use to think most people on disability were screwing the system and lazy. I just donít see how that is possible after what I have been through. I use to think the world was full of good people now I think everyone is a hypocrite and an a-hole, except all the people on healthboards. I know this negativity is not helping any but I just cant stop it.

[COLOR=Sienna]Have you tried contacting a disability attorney? I think if you found the "right" attorney you would be able to get disability. You would need forms filled out by Dr. J. My attitude is what do you have to lose by trying?[/COLOR]
Yes I have and she said it would not be easy because I am only 36, I understand that but I also think if those people had a brain they could go back and see that I have worked since the age of 13 and all my health records from the last 2 years show that I am ill. I was very impressed when my lawyer told me she has heard of Dr. J and he is very good at helping to win disability. Dr. J is only a 150 miles away but it was still shocking.

[COLOR=Sienna]I am feeling better as I am on my own regimen of Jarrow's Probiotics and Colloidal Silver along with Doxy. I am also waiting for my Samento to arrive. I hope to see a LLMD soon and in the interim, I prioritize my life to keep the stress down, and do things to feel good about myself. As I said before, I believe that one has a choice about their attitude, and I always chose a Positive Attitude no matter how bleak life can become. I believe that "choosing" to be positive is half the battle in any disease[/COLOR].

The acidophilus I spoke of earlier is a probiotic. I donít know much about the benefits of collidol silver but I did see a 20/20 episode several years ago about collidol silver and lymes. It was about this young girl with lymes whose mother kept feeding her collidol silver and the young girls skin tuned grey. I am talking ghost grey, she looked horrible. That same thing has happened to many people who use it so be very careful. Also, it takes a very long time before the skin color returns.





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