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Old 05-11-2005, 08:04 AM   #1
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Bothrops HB User
Has anyone here gotten better, I am a little skepticle

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

 
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Old 05-11-2005, 10:59 AM   #2
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Re: Has anyone here gotten better, I am a little skepticle

Quote:
Originally Posted by Bothrops
question regarding treatment of chronic lymes. Has anyone here gotten better? It really blew my mind when he told me that he would probably treat me regardless of the results.
Hi Derek, Of course, I can't answer for everyone here, but I did get better. I still have "it", but that was because of my LLMD. What happened with me was, after seeing him for 6mths, he finally hit a combo of abx that worked. I was symptom free for 3 mths, then he decided to take me off the abx combo to see if the bacteria was dead. The bacteria was still there, within 2 weeks all my symptoms returned; every last stinking one of them. I went back on the same abx combo, but it was too late. The combo didn't work anymore. So, we're back to square one trying to find something else that will work. I've seen, on other boards, people with chronic Lyme who have been treated & gotten better. How long that took was never really stated.

It would bring questions to my mind also, if a doc said I'd be treated regardless. If he's treating you for something you don't have, well that would be a misdiagnosis then, wouldn't it? I know Lyme is hard to figure out just as with most of the other diseases it mimics. Most LLMD's don't go by the tests they go by symptoms, so I see why he would say regardless of the test results.

My experience was, my LLMD gave me a high dose of abx, can't remember which ones, then I had to do the urine test to see if there were bacteria being killed off & showing up in my urine. The test was neg & I started crying because I thought that meant I had MS as I was originally diagnosed. I had the Western blot IgG & IgM plus PCR results from a CA lab. They were equivocal. But since this test was neg without a doubt, then I thought that was it. He said if my urine test & the other tests were all neg then he would have said there was nothing more he could do for me. Since my other tests weren't absolutely neg & I had a ton of symptoms, then he felt he could help me. So here I am today; 1-1/2 yrs later (2 yrs since starting treatment).

I never had the EM (rash), less than 50% of people have that. Also, I think there is some question as to the reliability of testing with some or most of the labs. That may also be a reason why your LLMD doesn't consider the test results. There is another lab, in FL I think, who has come under question because 100% of the tests they run come out pos. What I have personally learned is, if there are some bands that show up on your tests, they can be caused by Bb or some other bacteria.

The one big question I think you should ask yourself is, are you feeling better while on abx? If not, there could be 2 explanations. Either you don't have it, but do in fact have something else or you have Lyme but have yet to hit on the right abx to kill the bacteria. Since the mess up with my abx, I have not felt good. However, my vision in my left eye stays blurred all the time, but if I miss a dose of abx my vision gets worse. When I take my missed dose, it straightens up. That's the only thing I can go by. All my other symptoms, the muscle aches & pain, the fatigue, etc., stay the same, but my vision improves. So the abx is doing something; just not enough.

It's your decision to stay with the treatment. You can go off treatment anytime you like. Then if your symptoms flare, that would give you some indicator as to what is happening. If you don't have any type of bacteria, Lyme or otherwise, there will be no change in your condition. But, if you do have some sort of bacteria causing all your problems, your symptoms will probably get worse or new ones will come along indicating the abx were doing some good, just weren't the right ones to kill off the bacteria. Going off the treatment for a while may be the only real way to know what's happening with your body. If they don't seem to be helping, then this would be a good time to decide to go off them.

The way I look at it is, I would take the word of any doc, including my GP, if there was a clear answer from them as how best to treat what they say I have. Since I was diagnosed with MS, the drugs prescribed were dangerous, that I would have to inject 3 x's a week at a cost of $10,000/yr. I had to weigh that with the the fact there were still questions that needed answered & my GP refused to do any blood work to answer any of them, including Lupus. These docs aren't God, they make mistakes, & in my book, too many mistakes for me to allow them 100% free reign of my health. So, would you feel better putting your health 100% in the hands of the doc's you've seen? Would you be willing to take pain meds, steroids, etc., for the illness they say you have?

YOU have to take care of you!! You have to do what's best for you. If that means leaving all your docs for a little while, then that's what you have to do. If it means leaving your LLMD, taking the advice of your other doc's, then that's your decision. No one knows better what's going on with your body then you, & no one knows exactly how it feels to be in your shoes than you.

Hope this helps. Ruth H in WV

 
Old 05-11-2005, 11:18 AM   #3
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Post Re: Has anyone here gotten better, I am a little skepticle

Wow, Derek! I'll try my best to give you my answer as to why I believed my doctor when I was told I have Lyme....I go back to perhaps as long as 15 years, so my experience is that of myriad symptoms, periods of time, doctors, tests and progression/regression. I will try to encapsulate it as best as I can.

In the beginning of "the disease" I was working full-time, a fully capable, confident, leader personality, wife, mother of 2 grown children, caretaker of a lifelong ill mother, busy volunteer, bookkeeper to my husband's business, etc. etc. etc. Your normal housewife person....

I began losing my previously close lifelong contact with my friends, subtle at first, then noticeably long lapses, diagnosed at that time with depression, commitment to a psych ward for the same, placed on a multiple series of antidepressants...this was also accompanied by loss of memory, (my full time job depended strongly on this trait) getting lost driving in my lifelong hometown, forgetting and not being able to tell my children apart, losing my full-time job because of total loss of capability to organize, remember appointments & names, where my car was parked, inability to read or write anything, could not assume any reasoning when it came to how to cook and clean again, etc. everyday things.....An ELISA test was negative, but I was given a 3 week course of Doxycycline, and made a relatively impressive recovery of some of my symptoms and pronounced "cured" of probable Lyme.

(Brain fog precludes my continuing for now, but I will p/u this thread again - don't give up)

 
Old 05-11-2005, 02:05 PM   #4
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Re: Has anyone here gotten better, I am a little skepticle

Hi,

First of all, according to the CDC, a diagnosis of Lyme is to be made clinically due to the inacurracy of testing methods, including the Western Blot. The FDA states that this test is not sufficiently accurate to be used as the primary factor in making a diagnosis. It was originally intended for use in tracking the spread of the disease, not as a diagnsostic tool. There have been numerous cases in which people tested negative for antibodies only to later have the actual Bb organism cultured from their body tissues. To complicate matters still further, there are many different strains if Bb, and if someone is carrying a differnt strain the test may well miss it.

So in other words, if you are looking for an absolute precise "yes" or "no" diagnosis based on a test, unfortunately such a test does not presently exist. We can only hope such a test will be developed in the near future.

I too asked about people getting better, and I have heard from people who have completely gotten their lives back after finally receiving correct Lyme treatment. At least one of them is a J Clinic patient.

Still, if you really don't feel comfortable with it or really don't think you have Lyme, perhaps then there's no reason for you to start treatment.

 
Old 05-11-2005, 04:38 PM   #5
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Re: Has anyone here gotten better, I am a little skepticle

Hello Derek,
I am sorry to hear that you have not recovered from this terrible disease.

My test results IGG IGM showed that I had Lyme disease. I saw Dr J . No small feat since he is 900 miles away.
I will not bore you with the many disasterous trips that I had going to the clinic. I mean the trip themselves nearly did me in. Then inurance did not want to cover. Then a lawyer wanted money to fight for my case. Finally after 3 months, I was able to start IV therapy on 11/18/04. Tomorrow 5/12/05 I go to the J clinic to have the Picc line removed. I have one remaining symptom and that is ringing in my ears. However, I am on oral antibiotics and will ask if that casues it.
Now, how to rebuild or enhance my immune system so my body can continue to fight of the disease? Well, I saw an infomercial on a Cancer. It was presented as a slick marketing, but I tried it anyway. The MD had cancer and fought it by a change of life syle. Reduce stress (Through Spiitual life), fresh air and exercise, Water (lots of it) sleep ( get to bed at 9:30 PM) a vegetarian diet and jucing.
She claims to have beaten Cancer with no Chemo or radiation. She actually shows ths orange size lump on her chest. She trashes the drug industry, the FDA and fellow MD's.
So that is how I beat it and hope to beat it some more.

Hope this helps

Thanks for sharing your thoughts.

 
Old 05-11-2005, 05:28 PM   #6
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Re: Has anyone here gotten better, I am a little skepticle

Hi Derek,

Yes, I know people who are completely cured from Lyme Disease. I also think people who used to post on this Board no longer post because they are cured and going on with their lives.

I also believe that there are many different ways at looking at this entire situation.

First of all, even though no test is completely accurate, I believe IngeniX comes pretty close as I tested positive in 10 bands for Ehrlichiosis. I knew I contacted LD after my scroll in the woods as I felt a dramatic change in my body within weeks. Did Dr. J sent your blood to Ingenix and if so, what were the results?

Secondly, I am a true believer in having a good attitude and keeping a positive outlook on life and myself. I am extremely thankful that I do not have Cancer and was told that I have 6 months or more to live. I would much rather have LD compared to that.

Thirdly, I do believe Stress plays an important role in any disease, no matter what it is. People get sick just from stress alone.

I believe in Meditation, now I am learning Yoga and even though I have LD, I still feel good and am able to function to a certain point.

Have you had a complete checkup to rule out other illnesses?

Feel better,
Denise

 
Old 05-12-2005, 05:57 AM   #7
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Re: Has anyone here gotten better, I am a little skepticle

RuthH,
I've been wondering ever since I read your post above last night. Any theories as to why the ABX combination didn't work the second time around? What a roller coaster ride these organisms give us. It seems to me we may never totally rid ouselves of them but only keep them under control with a healthy immune system and proper detoxification. It's like the streptococcus germ that is present in all of us and responsible for "strep throat". Why don't people have a sore throat all the time? Apparently our bodies keep it in check until some weakness gives it a chance to attack us. Just wondering what you might know or think....

DD

 
Old 05-12-2005, 09:55 AM   #8
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Re: Has anyone here gotten better, I am a little skepticle

Quote:
Originally Posted by 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
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.

 
Old 05-13-2005, 08:30 AM   #9
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Re: Has anyone here gotten better, I am a little skepticle

Quote:
Originally Posted by deejavu
Hi Derek,

Yes, I know people who are completely cured from Lyme Disease. I also think people who used to post on this Board no longer post because they are cured and going on with their lives.

I also believe that there are many different ways at looking at this entire situation.

First of all, even though no test is completely accurate, I believe IngeniX comes pretty close as I tested positive in 10 bands for Ehrlichiosis. I knew I contacted LD after my scroll in the woods as I felt a dramatic change in my body within weeks. Did Dr. J sent your blood to Ingenix and if so, what were the results?

Secondly, I am a true believer in having a good attitude and keeping a positive outlook on life and myself. I am extremely thankful that I do not have Cancer and was told that I have 6 months or more to live. I would much rather have LD compared to that.

Thirdly, I do believe Stress plays an important role in any disease, no matter what it is. People get sick just from stress alone.

I believe in Meditation, now I am learning Yoga and even though I have LD, I still feel good and am able to function to a certain point.

Have you had a complete checkup to rule out other illnesses?

Feel better,
Denise
Hey deejavu,
Dr. J did send one test to Igenex that was Ehrlichiosis. I really could not make it all out. I know he took blood for 16 or 17 different test. I was very happy that he checked my adrenals, my GP told me that she did but she did not. He also sent me to have a SPECT scan of brain and sinuses and checked for HHV-6. He is a very good Dr. I have no idea to the results yet, I will be going back on 5/25. Something tells me it will all be negative. Lets say that instead of having 10 bands you had none, would you take the abx treatment anyway? I know I should not jump to conclusions maybe I do test positive, if so I will not think twice about doing abx.

As far as stress is concerned I do have a problem with it. I cant help it, I really try hard not to let things get to me but they do. I worry about my kids, I worry about my wife being faithful. Not so much about her cheating but where could I go if she did, I pretty much depend on her at this point. At the moment I have nothing. I have lost all respect for our government and disability. This system sucks. I cant help but think what if I was not married and my parents were not around, if that were the case I guess I would be homeless right know and would have probably died during the winter. I have been disabled for two years and turned down twice for disability. How do I get someone to believe that I am sick when I look absolutely normal? If I can get the disability than that will go a long way to helping the stress. I can help pay the bills and I will finally have a way out, if needed.

Yes I have had a full checkup. You name it I have had it!

Thanks for your response and I hope you get well soon.

Derek

 
Old 05-13-2005, 09:21 AM   #10
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Re: Has anyone here gotten better, I am a little skepticle

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

Last edited by deejavu; 05-13-2005 at 09:26 AM.

 
Old 05-13-2005, 09:41 AM   #11
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Re: Has anyone here gotten better, I am a little skepticle

Hey Derek,

I read your thread with interest because you are in the same boat a many of us. What to do? I'm glad you have lamotta to discuss things with as he seems to be pretty intelligent and forthright with his answers. I know he struggles probably more than the majority of us about the validation of lyme for himself anyway. I was pleased to see that he said in some cases CFS can go away in 5 years. I'm sure this isn't the case for everybody but encouraging nonetheless. I truly wish this for him and anybody else who this may be affecting.

I know you said you have panic type problems and I wanted to relate something to you. I used to be the same way years ago. I volunteered to be my kids PTA treasurer as long as I didn't have to get up and speak. One time they made me and I thought I would pass out. I got over that a long time ago but still continued to stress out over everything. I took on every problem my family had no matter how large or small. Of course this was probably my downfall. Way to much stress!

Last year long before it was determined that I am probably suffering from lyme ( still not absolutely sure) I went to a Chinese accupuncture doctor. She was trained in Northern China, her husband has worked for IBM for years and her daughter is an Internal Medicine resident at a Dallas hospital. I only tell you this so you know she is somewhat "americanized".

She worked on my legs as that was the biggest problem I was having at the time and we were making progress. I even got to the point I could go to her by myself and stop at the grocery store on the way home. Around Christmas that year my daughter came home and became a real problem again (she's 34) and it really set me off and I went into a downward spiral.

Within 2 weeks the doctor said she didn't know what the problem was but the needles were no longer working for me. I told her about my daughter and she sent me home with chinese herbs and talked to me for a long time about things I can control and things I can't. She didn't even want to see me for 3 weeks so I could calm down, and she didn't want to waste my money because she felt my "energy" was being channeled elsewhere.

I remember saying to her that I would have to come and live at her house if I wanted to avoid stress. She got this funny look on her face like I meant it. Of course my daughter had gone back to Philly and just left me in a mess.

This doctor did more for me than any medicine could ever have done and it is truly amazing how I respond to outside influences now. The whole reason for this thread is to encourage you to find somebody who does accupuncture (preferably chinese) and I'm sure they will help you at least in the stress area of your life.

All of this was completely new to me, I had never been to a chiropractor, accupuncture doctor, or homeopathic. I have a totally different outlook on life and am now working towards getting the lyme out of me. I just feel you need to get rid of all of the side issues before you can get rid of the lyme.

Now my husband is the one who freaks out at everything and he used to be so calm. I keep telling him that he needs a few needles in him! I think he is amazed that we have kind of switched places. He is always telling me that he could never have gone through what I have for the last 4 1/2 years and I just say that is why God gave me this not him. I even amaze myself sometimes.

I am not saying I don't ever get upset or frustrated but I definitely choose my "battles" now. This is just a suggestion and I can't guarantee you would get somebdy as good as mine but it is definitely worth a try. I wish you luck on your journey and do keep up the dialogue as I believe it helps so much to be able to discuss things with others.
betterdaysforme

 
Old 05-13-2005, 07:17 PM   #12
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Re: Has anyone here gotten better, I am a little skepticle

What is this everyone is saying about CFS going away in 5 years? What is suppose to make it go away? I have had CFS & FMS (or so I was diagnosed) for over 11 years. Whatever it is it did sort of go in remission for about 3 yrs where the pain lessened, then I broke my right leg and left ankle at same time and starting hurting all over, then the neuro symptoms started and the migraines. I know of someone cured by Dr. J and you are lucky to be seeing him. He is treating you appropriately as defined by the CDC and stated in many medical & pharmaceutical texts. Lyme is suppose to be diagnosed clinically, then if you can get tests to back it up even better. The thing is if a person has had Lyme for a long time they may never show antibodies on any of the tests currently available. Sometimes one will if given abx during the testing, but there are numerous people with Lyme who respond to the treatment, but never test positive.

 
Old 05-13-2005, 07:49 PM   #13
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Talking Re: Has anyone here gotten better, I am a little skepticle

Derek,

I just wanted to add that perhaps the reason you don't see people posting saying they are better after Lyme treatment is because they may not stick around to post. I know of someone cured of Lyme and no she doesn't post her. She feels great now. She is out being active and running around instead of spending hours in front of a computer because after all she doesn't need to research or talk with other Lymies. She is out there enjoying life like probably everyone here wished they could. I used to post extensively on the thyroid board a few years ago. I finally got the right treatment from the doctor, the right dosage of medicine, so I don't post there anymore since I don't really have anything "new" to say. So don't let it make you second guess treatment because you don't see cure postings right and left. If I wasn't feeling like crap and wanting others to talk to about treatment options then I wouldn't be on here either. It would be nice for someone to stick around who has gotten better from Lyme, but what could they really say? I mean not every person responds the same to each antibiotic and we do not all have the same combination of co-infections so it is very limited as to what such a person could post as there is no one way to treat Lyme.

Last edited by AngelaA; 05-13-2005 at 07:52 PM.

 
Old 05-14-2005, 03:22 PM   #14
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Re: Has anyone here gotten better, I am a little skepticle

Quote:
Originally Posted by Bothrops
Hey lamotta,
What I meant to say was sister in law. You see my brother and his wife live in Holland and came to the states to visit. They were visiting some friends in NJ and went to the pine barrens or sand hills part to get outdoors and she discovered a tick on her the next day with the bulls eye around it. Classic case. That is pretty much all I know about it. NJ is difenatly lyme country. I live in SC and enjoy catching reptiles and amphibians. My favorite places to do this are Charleston, Berkely and Aiken Counties. These three counties have the highest rate of lyme in the state. So it points in the direction of lymes but I have dealt with stress since the age of 12 most likely due to frequent moving. I have also have social anxiety problems and this in itself has caused a lot of stress, I droped out of collage because of that crap. I can handle a 12í King Cobra without any fear but getting embarrassed in a room full of people scares the hell out of me.

I am not doing a good job of managing it, like I told deejavu stress is still a factor. As far as symptoms are concerned I have them all plus a couple that no one speaks of like frequent urination and 24/7 lightheadedness. Last Saturday I went to a CFIDS/FM seminar in my home town. It was held by Dr. Lapp and Dr. Black from Charlotte NC. In the seminar he was talking about low blood volume in people with CFIDS and said the reason was frequent urination and not drinking enough water to make up the loss. This was the first I ever heard of people with CFIDS having frequent urination, it really hit home. It still does not help because chroic lymes is basically CFIDS from Lymes and FM can also be caused by lymes.

I was put on Doxy 200 mg a day for 3 months. I thought it helped because my constipation stopped and the stabbing pains in left flank stopped. I was also taking acidophilus. Anyway when I stopped the doxy all the probs came back so I thought I was on to something. I started taking the acidophilus by itself and the problems disappeared again. What do you think this means? I have heard that yeast can cause kidney pain. I told my GP this and she said there was no way to check for yeast in men and gave me 3 diflucan pills. I heard people have died using diflucan so I have not taken it yet. You said to be aware of LLMDís, I am having problems trusting any of them, however I would love to get with Dr. Lapp problem is he does not accept SC Medicaid.

Lamotta I can see why chronic lymes is becoming so popular. I would love to call my boss and say, the reason I have not been to work for the last two years is because I have lymes disease. It sounds like something that would put you out for several years. It sure sounds better than missing two years of work due to chronic fatigue, something that everyone thinks they have!

Lamotta can you tell me what you are doing to help you sleep. Dr. Lapp spoke about how important it is to get 8 hours of sleep every night. I have a hard time getting 6 and when I do it feels like a half sleep , if you know what I mean.

Well hang in there,
Derek
Sorry Derek...I went back and reread your original post and it did state sister-in-law. Sorry, my oversight! Still though, I think my point is valid. Seeing her go through what you would call a "classic" case of Lyme Disease is not by any means uncommon. The truth is most people who develop a true Lyme Disease infection will go through a very similar event as her and often times immediate and appropriate antibiotic therapy will improve the condition completely within a couple of months. In fact, most people will notice at least some results within the first couple of weeks for sure. Since you were on Doxycycline for 3 months with little improvement in the majority of your symptoms, the Lyme Disease diagnosis does seem highly questionable in your case as it did in mine...of course many LLMD's would probably disagree with me, but you know how that story goes.

Its very interesting that you noticed an improvement in your stomach pains when taking Acidophilus alone. What the Acidophilus is doing is replacing your intestinal flora with 'good' bacteria. It is believed that CFIDS, being primarily a disorder of the immune system, can cause excessive destruction of the intestinal flora because of how overactive and inefficient the immune system can become. This may allow 'opportunistic' infections to flourish and cause pretty severe symptoms like diarrhea and discomfort. I'm glad that you picked up on this treatment and that its working well for you. If the problem seems to be solved by the Acidophilus alone, don't bother using the Diflucan just yet as it probably isn't necessary. There could have been a chance that you got a fungal infection but it doesn't appear to be a problem right now.

As far as my sleeping goes, right now I seem to be sleeping rather well so I don't take anything. I usually go to bed around 11:30 or midnight and wake up naturally around 9:30 or 10am. It does sound like a lot of sleep but I always seem to wake up refreshed now that the weather is warmer and I'm getting plenty of sunshine. That is the key by the way...that you wake up refreshed! You can sleep 12 hours but if you wake up dog tired then it isn't good enough. I would suggest talking to your doctor about trying sleep medications like Ambien, Sonata, or Lunesta to help your sleep quality improve. If you don't want to go that route just yet, you can try simple OTC things like Benadyl or Valerian Root and see how that goes. There are, by the way, many patients who use anti-depressants to help them sleep better and thats all they need. Do you take anything like that for your anxiety?

I've also heard of low blood volume (hypovolemia) being a problem in up to 80% of people with CFIDS...I believe that it comes from an autonomic nervous system disorder known as POTS...ever heard of this? I personally don't suffer from it or at least I don't think I do anyway as I don't seem to get dizzy very often. My doctor would check for this by measuring my blood pressure lying down and then standing up. Mine went up slightly upon standing which is completely normal. If yours stays the same or drops, then it could be a problem. I believe this can also be related to low cortisol levels. Ask your doctor about this if you think it may be a problem for you because medication can treat it.

And yes it would be easier to tell people you have Chronic Lyme Disease rather than CFIDS, because Lyme disease is generally much more accepted by the public. Most people, I've found, haven't heard of CFIDS or are completely misinformed about how serious it is...they believe that its just about being tired all the time which couldn't be further from the truth. You tell people you have Lyme Disease and you hear, "Oh Wow, I heard that can be serious! I know so and so how had that really bad...Get better soon...etc etc..." Am I right? As to whether or not Chronic Lyme Disease/CFS/Fibromyalgia are really all variations of the same illness I do not know for sure. One things for certain they all involve some kind of immune system abnormality. Someday further research will unravel this mess.

 
Old 05-16-2005, 10:09 AM   #15
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Join Date: Jul 2003
Location: Greenville, SC, USA
Posts: 578
Bothrops HB User
Re: Has anyone here gotten better, I am a little skepticle

Quote:
Originally Posted by 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
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.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.

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.
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.

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?
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.

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.

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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