Guest guest Posted February 19, 1999 Report Share Posted February 19, 1999 As a cardiac LYMER I know POSITIVELY that lyme can attack your heart. This is NOT just antecdotal....cardiac lyme IS ALSO in the literature.....5-8% of all lymers will get cardiac lyme....of this number 80% will have their cardiac lyme halted/cured with antibiotic treatment.....the other 20% (such as myself) have had the bacteria burrow into our hearts and will live on a heart medication for the rest of our lives (which of course they dont know how long will be)...added risk comes to the lymer if they have a family history of heart problems....we live each day as if it could be our last.....and pray for another......lymebrain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 1999 Report Share Posted February 19, 1999 In a message dated 2/19/99 11:51:03 PM Eastern Standard Time, Prinny328@... writes: << The doctors also said that my chest pains are muscular and there was no heart involment. Thank you for you responses in advance >> : I, also had been to cardiologist . I had a very rapid heart rate and terrible tightening pains through my chest area. After numerous tests---nothing conclusive---and being told that this " was not Lyme disease related " , I sought a Lyme literate physician ( who just happened to be an internist who specialized in cardiology) and got the treatment I needed. I also work for a chiropractor who does a very deep and sometimes " painful " type of muscle massage and he convinced me that my pain was definitely from my pectoral muscles that go into severe spasm. The massage he does really helps when these muscles decide to act up. Fortunately, I am doing quite well now. The last antibiotic I was put on was a combination of Biaxin/Plaquenil and I have been symptomless now for 9 months since I stopped that regime. I am keeping my fingers crossed. This is the longest period of time for me that I am feeling like a " normal person " ------I had forgotten what that was like. I hope you can find what you need to make you feel alive again. Mona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 1999 Report Share Posted February 20, 1999 yes, one of the complications of long term ( chronic ) lyme is cardiac problems...... it is one of the many things i suffer from......i also have the pains and heart palpitations that u spoke of.....i would recomend looking qat some of the lyme web sites....there is info about cardiac and lyme.....then copy it and gice it to ur heart doc....if he blows it off find a new doctor.....amazing we the patients have to teach the pros about this disease???? Reid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 1999 Report Share Posted February 20, 1999 Hi Mona, That Biaxin Combo is what I am taking now.Could you tell me how long you were on it as I don't not want to get taken off anytime soon and it has been almost four months. Thank you and continue to be Well!!! -Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 1999 Report Share Posted February 20, 1999 Hi, Val: I sure hope it works for you as well as it did for me. I went on the combo in November of 1997 and was symptomless within about 2 1/2 months. I stayed on it until May of 1998. Dr. Keszler said she wanted me syptomless for 3 or 4 months before she stopped it. Val, I forgot what it felt like to feel " normal " .....I just pray that this lasts. I'll say a prayer for you also......I know how horrible this thing can be. I don't remember where you are from ( I am from Ct.) , are you going to the meeting on 2/24/99? If so, maybe I'll find you in the crowd ). Mona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 1999 Report Share Posted February 21, 1999 Hi Val What dosages were you on and how long were you sick before going on this combo? thank you in advance lea WISHXXX@... wrote: > From: WISHXXX@... > > Hi, Val: > > I sure hope it works for you as well as it did for me. I went on the > combo in November of 1997 and was symptomless within about 2 1/2 months. I > stayed on it until May of 1998. Dr. Keszler said she wanted me syptomless for > 3 or 4 months before she stopped it. Val, I forgot what it felt like to feel > " normal " .....I just pray that this lasts. I'll say a prayer for you > also......I know how horrible this thing can be. I don't remember where you > are from ( I am from Ct.) , are you going to the meeting on 2/24/99? If so, > maybe I'll find you in the crowd ). > Mona > > ------------------------------------------------------------------------ > Suggestions on how we can improve ONElist? Go to the 'Suggestion' > box on our new web site. > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or " normal " for > the word " subscribe " ( " normal " is the opposite of " digest " ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 1999 Report Share Posted February 21, 1999 Hi Mona thanks for the reply. I am from Manhattan. I wanted to go to the hearing on the 24th but I can't seem to get off of work. Gotta save up those sick days ya know. Anyway I have been on this combo for four monthes and although I am better I am still not back to normal. I was on zithromax and amantinine in 97 and was well for a whole year. Then in july of 98 I relapsed bad. I am now probably 60% better but I just want so bad to get back to where I was after the zitro combo. It is so frustrating sometime. Anyway good luck at the hearing I hope a lot of people are there to help us. Continue to feel well-Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 1999 Report Share Posted February 21, 1999 In a message dated 2/21/99 12:47:38 PM, solar@... writes: <<Hi Val What dosages were you on and how long were you sick before going on this combo? thank you in advance>> Hi Lea, I am on 1500 Mg of Biaxin and 200 plaquinel. Is that what you were on. when I was on the Zithro combo it was 750 mg zithro and 200 mg amandatine. I have had this disease for five years and have gone into remission about four times each time for a year or a little more. It just keeps coming back. if I can get into a remission this time which I pray to God, I want to stay on antibiotics for at least a year or two. I usually only stayed on them for about four to six months and then went off because all of my symptoms disapeared. Continue to feel well -Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 --- gordon_sara26@... wrote: > From: gordon_sara26@... > > Is anyone getting these? I keep getting an error > message. sorry! If I only had a brain! > > hi- I am getting this message ok. Are you able to get these? L(MI) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 HI: Ambrotose promotes proper cell-to-cell communication which supports the immune system's ability to deal with infections of various kinds (including yeast) and also helps cells recognize each other which is real important in conception. I hope this helps. Russ help > From: " Amy Dickey " <ADickey@...> > > My husband and I are trying to have a baby. I have candidiasis (yeast) and > my husband probally does too. > Currently I am taking Xodus from The Brain Garden (for a slow fiber cleanse) > EPO from GNC and FloraFood from AIM. > Does anyone have any suggestions for a parasite cleanse and do you know what > the ingrediants are and if they are safe while tryng to conceive??? > Does anyone have any furter suggestions for my yeast prolem? > AMY > mailto:adickey@... > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Can anyone tell me if you can rid yourself of Candida without being on the diet? I am taking the supplements to kill the yeast, but find the diet way too restrictive and find myself eating things I shouldn't eat. Not much of it, but still eating it. I am willing to take my time ridding myself of this if it means not hurting so much and having a bit more choices in what I eat. Liz †Patience is bitter but its fruit is sweet " The end of a thing is better than the beginning; the patient in spirit is better than the proud in spirit " Ecclesiates 7:8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Crosby wrote: > HI: > > Ambrotose promotes proper cell-to-cell communication What is Ambrotose, ? Liz †Patience is bitter but its fruit is sweet " The end of a thing is better than the beginning; the patient in spirit is better than the proud in spirit " Ecclesiates 7:8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Re: help > From: ~Liz~ <liz0625@...> > > Crosby wrote: > > > HI: > > > > Ambrotose promotes proper cell-to-cell communication > > > What is Ambrotose, ? It is a blend of the carbohydrates that participate in the formation of glycoproteins that the cells of our bodies use for communication. When we add them to our diet, cells communicate better and the immune system works better and the body then is empowered to get rid of the yeast. In fact, Candida cannot live in the presence of ambrotose, because it empowers the macrophages so well that they go around gobbling up and killing all the yeast cells they can find like nothing else that has ever been seen before. > > Liz ? > > Patience is bitter but its fruit is sweet > > " The end of a thing is better than the beginning; > the patient in spirit is better than the proud in > spirit " > Ecclesiates 7:8 > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Crosby wrote: > > > > What is Ambrotose, ? > > It is a blend of the carbohydrates that participate in the formation of > glycoproteins that the cells of our bodies use for communication. How do you get this miracle stuff and is it just called Ambrotose? Is it expensive? Liz †Patience is bitter but its fruit is sweet " The end of a thing is better than the beginning; the patient in spirit is better than the proud in spirit " Ecclesiates 7:8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Re: help > From: ~Liz~ <liz0625@...> > > Crosby wrote: > > > > > > > > What is Ambrotose, ? > > > > It is a blend of the carbohydrates that participate in the formation of > > glycoproteins that the cells of our bodies use for communication. > > How do you get this miracle stuff and is it just called > Ambrotose? Is it expensive? Have to order it directly from the manufacturer. Ambrotose 1 bottle, 60 capsules, US$39 retail. $28.50 wholesale, $25.65 on automatic monthly delivery Bulk powder 50 grams (= 5.5 bottles of capsules): $65 retail, $55 wholesale, $49.50 on automatic monthly delivery Bulk powder 100 grams (=11 bottles of capsules): $125 retail, $100 wholesale, $90 on automatic monthly delivery. Wholesale purchasing privileges after registration. Cost to register = $49 (includes 1 bottle of ambrotose capsules). Net cost to register then is $10. They accept credit cards. Phone 1-800-281-4469. You will need this access code R195838 when asked for enroller/sponsor #. You will be assigned your own access code (called a control number) so you will be in control of what you want to order, when you want to order it at the same 800 #. Hope this helps Russ > > Liz ? > > Patience is bitter but its fruit is sweet > > " The end of a thing is better than the beginning; > the patient in spirit is better than the proud in > spirit " > Ecclesiates 7:8 > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 I was told that all carbo's were bad for yeast as they all turn into sugar? Myra Re: help > > > > From: ~Liz~ <liz0625@...> > > > > Crosby wrote: > > > > > > > > > > > > What is Ambrotose, ? > > > > > > It is a blend of the carbohydrates that participate in the formation of > > > glycoproteins that the cells of our bodies use for communication.. > > > > How do you get this miracle stuff and is it just called > > Ambrotose? Is it expensive? > > Have to order it directly from the manufacturer.. > > Ambrotose > > 1 bottle, 60 capsules, US$39 retail. $28.50 wholesale, $25.65 on automatic > monthly delivery > > Bulk powder 50 grams (= 5.5 bottles of capsules): $65 retail, $55 wholesale, > $49.50 on automatic monthly delivery > > Bulk powder 100 grams (=11 bottles of capsules): $125 retail, $100 > wholesale, $90 on automatic monthly delivery.. > > Wholesale purchasing privileges after registration. Cost to register = $49 > (includes 1 bottle of ambrotose capsules). Net cost to register then is > $10.. > > They accept credit cards. Phone 1-800-281-4469. You will need this access > code R195838 when asked for enroller/sponsor #.. > > You will be assigned your own access code (called a control number) so you > will be in control of what you want to order, when you want to order it at > the same 800 #.. > > Hope this helps > > Russ > > > > > > Liz ? > > > > Patience is bitter but its fruit is sweet > > > > " The end of a thing is better than the beginning; > > the patient in spirit is better than the proud in > > spirit " > > Ecclesiates 7:8 > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 1999 Report Share Posted July 29, 1999 Myra: Recent research is showing that this just is not the case and that this particular blend supports virorous macrophage activity which gives them the power to overcome the yeast. Re: help > > > > > > > From: ~Liz~ <liz0625@...> > > > > > > Crosby wrote: > > > > > > > > > > > > > > > > What is Ambrotose, ? > > > > > > > > It is a blend of the carbohydrates that participate in the formation > of > > > > glycoproteins that the cells of our bodies use for communication.. > > > > > > How do you get this miracle stuff and is it just called > > > Ambrotose? Is it expensive? > > > > Have to order it directly from the manufacturer.. > > > > Ambrotose > > > > 1 bottle, 60 capsules, US$39 retail. $28.50 wholesale, $25.65 on > automatic > > monthly delivery > > > > Bulk powder 50 grams (= 5.5 bottles of capsules): $65 retail, $55 > wholesale, > > $49.50 on automatic monthly delivery > > > > Bulk powder 100 grams (=11 bottles of capsules): $125 retail, $100 > > wholesale, $90 on automatic monthly delivery.. > > > > Wholesale purchasing privileges after registration. Cost to register = $49 > > (includes 1 bottle of ambrotose capsules). Net cost to register then is > > $10.. > > > > They accept credit cards. Phone 1-800-281-4469. You will need this > access > > code R195838 when asked for enroller/sponsor #.. > > > > You will be assigned your own access code (called a control number) so you > > will be in control of what you want to order, when you want to order it at > > the same 800 #.. > > > > Hope this helps > > > > Russ > > > > > > > > > > Liz ? > > > > > > Patience is bitter but its fruit is sweet > > > > > > " The end of a thing is better than the beginning; > > > the patient in spirit is better than the proud in > > > spirit " > > > Ecclesiates 7:8 > > > > > > --------------------------- ONElist Sponsor ---------------------------- > > > > > > Get $20 off all MotherNature brand products! > > > <a href= " http://clickme.onelist.com/ad/mothernature1 " >Click Here</a> > > > > > > ------------------------------------------------------------------------ > > > _ > > > > > > Subscription URL: /subscribe.cgi/candidiasis > > > > > > > > > Send blank message to this e-mail address if you want to: > > > > > > TO UNSUBSCRIBE !!!!!!!!! : > > > > > > candidiasis-unsubscribeonelist > > > > > > To change status from normal to digest: > > > candidiasis-digestonelist > > > > > > To change status from digest to normal: > > > candidiasis-normalonelist > > > > > > To subscribe: > > > candidiasis-subscribeonelist > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 Dear Ginger, My name is Sharon Bowen and I'm the President of the Mid-State Volunteers Chapter located in Springfield, Tenn. My entire family goes to Vanderbilt for their health care. There is a WONDERFUL doctor there in genetics named Dr. E. Tiller who is very active in LPA. He would be more than glad to help you. We see Dr. Neil Green there for our orthopedic needs. He's the head honcho and has treated me all my life. Me, my husband and daughter all have achondroplasia. Dr. Greens bed side manner isn't always the greatest but I want an expert in his field not someone to hold my hand. If you'll e-mail me privately I'll be glad to pass on any info you might want or need. I'd also like to include you on my chapter mailing list too. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 Contact Dr. Tiller at Vanderbuilt. He is a medical geneticist there who has studied the SED family extensively and may be able to refer you to a good dr. there and advise the said dr. adequately. You will probably get lots of other good info from people on this list. -marty >>> " Ginger Ketron " <gingyk@...> 09/12 11:06 PM >>> From: " Ginger Ketron " <gingyk@...> Hi to all... I have posted questions here before and I am very grateful for all the responses. I guess I should remind you who we are since I write very infrequently. My son is Russ. He has the form of dwarfism called Spondyloepiphyseal Dysplasia. He has had one surgery which was done 2 years ago by Shriner's Children's Hospital in Greenville, SC. He had an osteotomy done to correct the windswept position of his legs. At the beginning of June, we traveled to Delaware to see Dr. MacKensie at Dupont and he agreed with us that Russ needs surgery done again. After a lot of struggles with the Shriner's Hospital, we have decided that we need to go else where to have this surgery done. Now, we need to find an orthopedic doctor who is familiar with SED. Our insurance will pay for most of the surgery and doctor visits if the doctor is in the state of Tennessee. We hope to find a doctor at Vanderbilt...but most importantly is that we find a doctor who is familiar with dwarfism specifically SED. If you know of any that we could look into seeing, please let us know. We live in City, TN. Thank you again. If you need more information before you can answer this email, then please feel free to write me back at: gingyk@... Love... Ginger --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 Ginger, We got a lawyer and fought our insurance company. Our son has all of his surgeries at s Hopkins. We fought and fought for his life saving brain surgery when he was nine months old. Last year(4 years later) we took him back to have his legs straightened, and they paid 90% no questions asked. We were only expecting them to pay 70%. All I can say is you pick the best doctor, and fight the insurance. We are very happy with Dr Ain at Hopkins 410-955-3135. At 11:06 PM 9/12/99 -0400, you wrote: >From: " Ginger Ketron " <gingyk@...> > >Hi to all... > >I have posted questions here before and I am very grateful for all the >responses. I guess I should remind you who we are since I write very >infrequently. > >My son is Russ. He has the form of dwarfism called Spondyloepiphyseal >Dysplasia. He has had one surgery which was done 2 years ago by Shriner's >Children's Hospital in Greenville, SC. He had an osteotomy done to correct >the windswept position of his legs. > >At the beginning of June, we traveled to Delaware to see Dr. MacKensie at >Dupont and he agreed with us that Russ needs surgery done again. After a >lot of struggles with the Shriner's Hospital, we have decided that we need >to go else where to have this surgery done. Now, we need to find an >orthopedic doctor who is familiar with SED. Our insurance will pay for most >of the surgery and doctor visits if the doctor is in the state of Tennessee. >We hope to find a doctor at Vanderbilt...but most importantly is that we >find a doctor who is familiar with dwarfism specifically SED. If you know >of any that we could look into seeing, please let us know. We live in > City, TN. > >Thank you again. If you need more information before you can answer this >email, then please feel free to write me back at: gingyk@... > >Love... > >Ginger > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 1999 Report Share Posted September 17, 1999 Hello everyone.. My name is Amy Casca,and I live in Washington state. I thankfully do not have Lyme disease,but am writing for a friend who we are very certain does.. He does not have a computer and his vision has gotton very bad so that is why I am writing for him.. He has been fighting this for about 4 years.. He was bitten by a tick and his friend remembers a very strange rash(bite happened on a hunting trip and in a place he could not see,I think the back of his neck) He has seen every kind of Dr imajinable and been tested twice for Lyme,with negative results. At this point he needs a walker to get even to the bathroom...Whatever this is has basically destroyed his life..He has lost his wife,his business etc... He is now staying in a back room at his brothers house.And ends up spending most of his time alone. He says that he can see but it is very blurred and things " move around " Have any of you experienced this. He also has a great deal of symptoms of lyme.His Drs seem to be giving up on him,he has been tested for everything.. Their last ditch effort is to put him on Chemo therapy.They can find NO cancer,but his Dr says that it may help whatever the problem is.. I think this sounds crazy.. Does ANYONE have any advice??? They want to start chemo on Monday,I am asking him to delay it until we can find a Dr to explore Lyme better first. Any advice is a god send,and I will print responses and read to him Thank you all Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 NO chemo! That may very well aggravate it and the side affects are too dangerous to risk. Chemo would just make him worse, I don't know what kind of idiotic doctor who would do that but I really don't want to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 1. Chemotherapy for someone without cancer does indeed sound crazy. Given the tick bite, and the rash (did the rash expand in size over many days?) he probably does have Lyme. Antibiotics are the treatment of choice. 2. Make sure he is tested for other tick-bourne illness, and not just Lyme. 3. One can have Lyme, and still have negative bloodtest results (see last link below) 4. Here are some of the most useful resources: http://www.geocities.com/HotSprings/Spa/6772/washington-patients.txt http://www.geocities.com/HotSprings/Spa/6772/washington-index.html http://healthlinks.washington.edu/nwcphp/lyme/ http://www.geocities.com/HotSprings/Spa/6772/resources.html http://www.geocities.com/HotSprings/Spa/6772/false-negative.txt You're a good soul. You will get additional help from this list, as well. This is a very caring group. All the best to you, and your friend. Margie -- Margie Roswell 3443 Guilford Terrace Baltimore, MD 21218 H: 410-467-3727 W: 410-455-6802 E: mroswell@... W: http://hello.to/maps On Fri, 17 Sep 1999, Amy Casca wrote: > From: amycasca@... (Amy Casca) > > Hello everyone.. > My name is Amy Casca,and I live in Washington state. > I thankfully do not have Lyme disease,but am writing for a friend who we > are very certain does.. > He does not have a computer and his vision has gotton very bad so that > is why I am writing for him.. > He has been fighting this for about 4 years.. > He was bitten by a tick and his friend remembers a very strange > rash(bite happened on a hunting trip and in a place he could not see,I > think the back of his neck) > He has seen every kind of Dr imajinable and been tested twice for > Lyme,with negative results. > At this point he needs a walker to get even to the bathroom...Whatever > this is has basically destroyed his life..He has lost his wife,his > business etc... > He is now staying in a back room at his brothers house.And ends up > spending most of his time alone. > He says that he can see but it is very blurred and things " move around " > Have any of you experienced this. > He also has a great deal of symptoms of lyme.His Drs seem to be giving > up on him,he has been tested for everything.. > Their last ditch effort is to put him on Chemo therapy.They can find NO > cancer,but his Dr says that it may help whatever the problem is.. > I think this sounds crazy.. > Does ANYONE have any advice??? > They want to start chemo on Monday,I am asking him to delay it until we > can find a Dr to explore Lyme better first. > Any advice is a god send,and I will print responses and read to him > Thank you all > Amy > > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 , My friends name is Les.. I think the chemo idea sounds very irresponsible,without the presence of cancer. The doc says if it is lyme,the chemo would help that also... I have done alot of research on the internet about lyme,and NOWHERE does anyone make mention of chemo?? I went and saw him again last night and it was so heartbreaking.... He seems to have gotton worse in just the last few days. His very worst complaint is constant dizziness and he says that everything moves around,like being in an earthquake,24 hrs a day..We are begging him to just say no top the chemo,but the Drs have told him this is his last hope basically... I dont know why they won`t just try the antibiotics and see... I would see that as a much more prudent step than chemo. But he has been laying there so long he is willing to do anything. I read somewhere that some people are getting their antibiotics from Vet suppy and treating themselves. We are horse people,Les also.. And him and my husband said they would even try that.They are both very used to doctoring the animals and could give the shots.. I think this is a very bad idea!! I told them I will not give them the name of the drugs to do that,(neither know enough about the comp. to find for themselves,and Les cannot see the T.V screen let alone read the small print of the computer}}but I can see the desperation. And how much crazier than chemo therepy is that??? I am due to have a baby on Oct 10th so I am worried about Les during that time.. If anyone will write him a letter,I will PROMISE to take it directly to him and read it,I think it would mean alot to him.. Thanks,here I go crying again so I will close for now.. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 1999 Report Share Posted September 18, 1999 Also yes they did try to call it MS for awhile and then ruled that out... Quote Link to comment Share on other sites More sharing options...
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