new lyme's info on my dad

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My dad went to a lyme's disease specialist/neurologist today in Colorado Springs to be treated for Lyme's Disease. This doctor was told that he himself had ALS. He believed that he had Lymes instead, and started taking meds for the Lymes. To make a long story short, the doctor has been on meds for 2 yrs now and many of the Lymes/als symptoms have improved greatly. When he decreases the meds, the symptoms begin to return. My dad was tested by this clinic for lymes and it came back positive. The mayo clinic (who supposedly knows everything) tested him and said that he does not have lymes, he has early symptoms of als. I really want to believe the other clinic. My dad will get a tube put into his chest tomorrow and begin receiving treatments for the lymes through the tube. The doctor he is seeing now (from Colorado) truly thinks that my dad's symptoms will improve. He also is having my mom tested for lymes too because he said that partners can transmit this disease to each other (kind of like the AIDS virus) through bodily fluids. My dad will receive the treatments for a year, as of now, and see how he improves. The doctor said the improvements are quick for some people, and take longer for others. I have just found this to be so interesting. I know people have talked about false hope, but I don't believe in that. I think that hope is hope no matter what. Sometimes a little bit of hope is all you need to get through a day. This doctor has given my family a lot of hope for today, and who knows what tomorrow will bring. I pray that the doc is right, and my dad gets better. Regardless if this is lymes or als, it is nice to have a doctor who is willing to help my dad rather than say "sorry, nothing we can do."
 
Hi Dana. I hope your dad's doctor is right in this case. Most of us hope for the same thing. Hope it isn't ALS. Hope for a cure soon. Hope we win the lottery. Hope is what makes most people get up in the morning. We hope today is better than yesterday. We hope things work out for the best for you and your family. You are lucky that you have found a doctor that is willing to look beyond what would look like the easy way out for some. Great news. Take care.
 
Hi;
I did the one year of IV antibiotics and 2 years after of oral antibiotics for the Lyme and coinfections. Did the antibiotics help slow down the ALS/Lyme or do I have a slow ALS? I don't really know but for me I do believe that my ALS was initiated by the Lyme. However not every ALS/Lyme case gets cured by the antibiotic treatments but it sure is worth a try! It does work for some and I hope that it works for you.
 
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Hi Patsy:
Just wondering... have you been positively diagnosed with Lyme's, and if so, do you know if you were infected in/around Kap or somwhere else?

T.
 
in Kapuskasing Ontario in 1995, while gardening in my backyard I got bit and a big bull's eye rash resulted! I worked public health then & since this area was deemed non-edemmic for lyme never thought of it much. I had the health inspector check my rash and said "well, since you got it in this area it can't be a tick bite. It must be a spider bite. " and since I hardly knew anything about tick bites I never thought about it again ! 4 weeks later I was hospitalized with a high grade uncontrollable fevers, nausea, vomiting, photophobia, rigors, severe headaches and stiff neck. The numerous tests came back showing an infectious process but we didn't find anything with the routine blood cultures. I was treated with broad spectrum antibiotics intravenously for 5 days.
After that episode in 1995 my energy level started to peter out and right dominant hand started twitching and cramping. We thought then that it was carpal tunnel and had no EMG! I had surgery for it and my hand got worse in spring of 1998. Started falling that year too, I rationalised it, as me being "a clutz". I had always been a clutz! Well I had fallen many times in those early years and broke my left ankle in early March 98. I was hyperreflexive, plus my gait was wide and stiff.
In June of 1998 started the neurological work up and E.M.G.'s, and the final diagnosis of Amyotrophic Lateral Sclerosis on September 1st, 1998.
It wasn't until late 1999 that I would come across the story of Pat Pepper and made the connection my bull's eye rash of 1995 and my ALS. After that, I was assessed by Dr Burrascano and tested for everything!
Since then, I have tested positive by lyme urine antigen test (LUAT) on 3 separate urine samples and 3 Western Blots at the Igenex laboratories and had other tests at the Bowen laboratories ! Even though I've had many negative western blot tests in the past I’m now positive. I have also tested positive co-infections: mycoplasma fermentins, babesia and ehrllichia. I have been successfully treated for the mycoplasma fermentins and ehrllichia, for the time being! I continue to be treated for the Lyme and babesia with supplements and the Rife machine, because the years of antibiotics have reeked havoc on my body. This of course done under the recommendations and guidance of Dr Burrascano, a top notch Lyme disease specialist!
I have to warn everyone that taking antibiotics for a long term period is very hard on your body, especially your your GI system! So therefore there are many risks, don't anybody take these risks lightly!
I believe that my ALS was triggered by Lyme, however it could that these are totally unrelated diseases and only time and research will tell!
Patsy
 
My father was just diagnosed with ALS in June and I am desperately trying to find information and links to the disease as best as I can right now. I would love to learn more about your father's results, especially since my father was also diagnosed at the Mayo Clinic and basically told you have ALS and we are soooo sorry. Yes, basically go home and deal with it. I have a very hard time accepting there is nothing that can be done, I know there isn't a cure but there must be something we can do.

I look forward to hearing back about any info. My heart goes out to you, I know how you are feeling right now. I have the hope still that somehow they are wrong, I need to hang on to hope of that or that at least we can help in keeping disease at a slower rate of progression.

Sincerely,

C Pacer
 
Hey Christina and welcome,

Sorry to hear about your dad. As for the rate of progression with als, no one really knows why some people fail faster than others. Your diet, and mental well being are of main factors I think, as well as many other contributing factors being alternative medicines and treatments. Unfortunatley, there are no givens to this awful ailment. One will progress as one progresses. Henrys als moved very slow for the first 5 years, and then it was a rapid downhill race. The bottom line is, what will be, will be. There are no concrete answers to als, as we all know. I hope that he will keep a positive attitude and a sense of humour in the days to come. That will help him a lot. A good support team is also of the must. It sounds like you are a caring loving family, so you will be alright. I know it does not seem that way now, but believe me, coming from one who knows, you will do fine. It is an overwhelming diagnosis to be told you have als, but, you will cope, you will find your way. Everyone has their own way of dealing with things and you will find yours. If you need anything, need any advice or questions answered please feel free to ask. We are a good bunch here and we will stick together through thick and thin. Take care and God Bless you all.

Stay Strong, Carol
 
Hi Christina,
My dad is currently receiving antibiotics for Lymes disease. The Mayo Clinic did not think he had Lymes, but he tested positive twice at another clinic, so we decided to treat the Lymes anyways. He was given the "early symptoms" ALS diagnosis too. We have seen little improvements with my dad, but I don't know if the antibiotics will cure his symptoms, or just prolong everything. Only time will tell. I do feel like the doctors and God have given us a second chance at this, and our whole perspective has somehow changed for the better. My family is really trying to look at the "bright side," if there is one, and just keep my dad happy doing the things that he likes. He's been golfing every night, and that seems to pull his head up. All of his muscles are doing great, so he is fortunate to be able to golf still. This disease makes you appreciate the little things, and realize that petty things should not interfere with your life. In the short amount of time we have been dealing with this, we have all learned a lot. The hardest part is seeing my dad sad. He tries to act like he is not bummed out, but we can tell. That has been the hardest thing for me. But, I just try to joke around with him and cheer him up. I hope you are able to do the same with your father. This is a tough time, but there will be some good days ahead of you too.
Dana
 
Hi, Chistina,
My dad also was recently diagn with als and sent home to fare on his own. I have been on the interned ever since, reading, writing notes, looking for answers. I have found a lot of help in this forum, and so will you, and thus, so will your dad. We devised our own regiment and if things go as they have so far, I will consider posting regularly as it may help someone else. As you will hear from everyone - this is a very individualistic illness and hard to predict. What were your dad's symptoms at the time he was dign? As Carol said, these first days and possibly couple of months will be the hardest. Please, related to your father that THERE ARE CASES, rare as they may be, but they exist, where individuals' progress stopped at a degree, or progress has been very slow, and very rarely, put possible, still, symptoms have reversed. This came from pals participating in another forum (brainstalk community) who were angry that the medical establishment most often fails to give that account to newly diagn patients, insted of the "so sorry" only. Give your father hope, so he can overcome the initial shock and bleak thoughts. Then, start the fight.
 
Great advice Upila, we have to support others with our thoughts on how to cope. It is imperative that a positive state of mind is kept. Having been through it, I know of the importance and comfort it gives all. It is all right to be angry, frustrated, feeling helplesss, and sad. These are emotions that we all feel at some point in our lives anyway. I hope that you have faith in everyone around you that will give you help and hope. Ultimately, it is still a very upsetting time and you are entitled to feel the way you want. Staying positive sometimes is easier said than done. I know it all too well. Anyway, have a good weekend everyone, and I will talk to you all soon. Stay Strong.

Love, Carol
 
Dear Carol, Dana and Upila,

Thank you so much for your kind words and obvious experience in dealing with this horrible news. The initial shock of the news was terrible for all of us, completely devastating and felt and feels like a horrible nightmare. Nothing could ever prepare you for this. I know I have to be strong and am trying so hard to be. I do have hope, I have to, that there is a chance he will be one of the luckier ones. As each of you mentioned, I do worry about him so much. He has been very depressed since the news, he has not taken it very well at all. I know he puts the face on for us, the kids, but know he is not so good when we are not around. I am still at the stage that I am not sure how to handle the illness with him. I don't know whether to talk or ask about how he is feeling, because I do want to know, or just as mentioned stay happy and light around him the best way I can. It has always been his nature to worry so much about us, I know now he is worrying how we are handling things as much as or more than he is worrying himself. Any suggestions on how to be that you think will help him the most. We have always had a wonderful and open relationship, however, I realize more now that he has never really talked much about any of his real concerns about life, he has only really worried about ours. As you can tell, he really has devoted everything to making sure we have always been alright.

I am so glad I have found this forum and am sure it will be a huge support network that I really need now and will as time passes. Thank you again for your comments and advice, I look forward to a continued support and openess that I have received having just joined the group.

Thank you for being so welcoming.

Christina
 
Christina,
I felt the same way when my dad got his diagnosis. I did not know what to say or do when he told us about the ALS. My whole family was thrown for a loop. We just thought the doctors would tell him that he was to stressed out and needed to take some time off work. Instead we were told that he has a life threatening disease. What a blow! The first few days were tough because my dad could barely talk to us. He would get emotional and have to leave the room. What I told my dad during this phase is how much I love him and how we were going to fight this as a family. I told him that he is not alone in this, and we are all ready to take this on. I shared this with my mom too, because I know how much she was scared. I asked him questions about what the doctor said, I tried to give him positive feedback, and I told him to bust out his Bible and start reading. My family found some sort of peace through reading the Bible and just giving this to God. For the first initial couple of weeks, we spent a lot of time with family, and just tried to act normal. I emphasized that his life was not taken away yet, so he needs to continue to do things that he likes. I brought my son over a lot, because this always seems to brighten anybodies day. (Watching a toddler can make anyone smile at least a couple of times) My dad started golfing again which is something he loves. Gradually, everyone kind of just picked up and continued to live their lives. It seems like it has gotten easier, but there are still some really tough days. There are days where my dad is sad, or my mom is frustrated, or I am scared, but we all seem to get through it together. Lean on your family and talk with them about how you are feeling. When you have tough days, have a good cry (if there is such a thing) and you somehow will feel better. It is also nice to have someone other than family to talk to. This forum might do the trick for you. The one thing I have learned so far is that I constantly tell the people I care about that I love them. I did not do this enough before my dad got sick, and it really has been a wake up call. You really do learn how short life is, and that you count your blessings daily for the people in your life. I hope this helps.
Dana
 
Thank you Dana for the beautiful message. I have been a bundle of emotions since the news, for the first two weeks I cried every couple of hours. As you have probably experienced, I think there is a definite grieving process that happens just in finding out the diagnosis. Unfortunately, we don't live in the same province as my parents but were luckily there on vacation for the week they got back from the Mayo clinic with the terrible news. I know it was good therapy for me to be there and deal with it initially face to face with my Dad. I tried to be strong in seeing him the first time after the news but I couldn't control myself and completely lost it. I think we both needed to do that. I have told my Dad I love him more in the last few weeks than I have over the past 32 years and he too in return. Yes, this situation definitely makes you appreciate your family so much it hurts. Since my emotional breakdown I have been able to keep the face on and chin up for him, which I know he needs. In being around him more since that first day, I realized he is still the same "Dad" and I should behave the same way around him now as I always have with just a dash more affections and I love yous than before. We have a one year old and had her in everyday that week, she added the lightness and joy we all needed, a great distraction.

Thank you so much Dana for your replies and positive words. I have hope and will continue to have hope for the future with my Dad, that is all I can do right now. I will appreciate every moment with him even more than I did in the past. Yes, life can certainly throw us some curve balls but I have always said it never puts on you more than you can handle. I have no choice but to handle this so I may as well handle it in the most optimistic way possible.

I am so glad I have found all the incredible people on this forum, another positive to appreciate in this journey we call life.

Christina
 
It sounds like we have a lot in common Christina. I also have a one year old. A little boy who in the most serious moments, makes us all laugh. I am fortunate enough to live in the same town as my parents, so I get to see them quite frequently. I bring my little guy over to my mom and dad's place, and he really lights up the room. Don't get me wrong...he has his moments of being a terror too! =) We have been dealing with this illness with my dad for about a year now, but we did not get the ALS diagnosis until March. It has been a rough year, but one that has brought my family closer. In the end, I know that there is a reason that we are going through this. My dad is a wonderful man who has touched many peoples lives, and this has already influenced many of them. I just hope his inner strength will continue. I hate to see him down and saddened, so I really feel like part of my job is to try to lift his spirits at those times. Easier said than done I guess. Anyways, I pray for my dad every day, and I will do the same for yours. I know that our dads will fight until the very end, and we will be there to help them in the battle.
Dana
 
Yes, it does sound like we have a lot in common Dana. I value your advice and appreciate having someone who is in the same situation. I feel I don't want to talk about too much with friends right now, it can get exhausting going over the details again and again with a number of people, do you find? This is the perfect outlet for me to get out my emotions with people who have first hand experience with the same situation.

How has your Dad been coping lately, better? We are going home next weekend and the weekend after, I am looking forward to that. I believe my spirits will be better this time than last.


Look forward to hearing from you again.

Christina
 
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