Lyme Disease Support Group

Hi, This is Phil. I have not been here for a while, but I thought I would check in today. They gave me a new antibiotic, Rifampin to the other things I'm taking. If this does not help much, I will have to start IV antibiotics. It's realy nice to be on here to give and receive information but what would be even nicer is to get phone calls and home visits. Since the standard medical community for the most part, does not except long term Lyme Disease as real and since the places to go for help, when you're having an episode or a bad time are so few and far between, it would be great if some of the professional people in this group would make home visits. I am wondering how I can get to a Lyme friendly place if I am sick and don't have the confidence of the local hospital. I know if I have a vertigo attack the hospital can help me, but I'm not sure about the other stuff.

it's a nice idea Phil, I'm just not sure that it's feasable. It seems as though the lyme patient to doc ratio is insaine. So many lyme docs are overwhelmed. I know we here at MDJ have had an influx of newbies needing docs, and we give them the names we can, many have to get on a waiting list, or are flat out told "no we aren't taking lyme pts at this time" they are just overwhelmed.

You could always exchange numbers (thru PM ONLY) with friends you've made here, and chat on the phone....sometimes that helps.

jaime

Hi Phil! Nice to hear from you...

I have also just been started on Rifampin along with the rest and am also recieving weekly IV Zithro and will probably be heading toward full IV if we don't get some results...

As far as having more Lyme knowledgible medical professionals available for house calls and such...OMG! That would be fantastic!...but I have to agree with Jaime. We are just not in a position to have that...for the Lyme community or even for the general population.

I know that they do make housecalls still in several European countries, but of course, at a price rather than going to the doc for free as they normally would.

Great idea though!

I have an idea. We should find out how many people from our group on MDJunction would be willing to make house calls to help people.

They would have to pass some kind of test for the right to represent MDJunction. We would need to see if there are enough people interested in doing this around the country and how much area they would cover.

I guess there would be a lot of things that need to be worked out, but it's worth exploring.

Another idea I have, would be to start a phone hot line for anybody who needs advice or help rather quickly. It's better sometimes to hear an immediate responce from a voice than to have to wait for an e-mail.

The hospital where I live has not been very helpful for me when it come to Lyme disease. If there is a Lyme phone hot line already someone please let me know.

Post edited by: toothfairy55, at: 12/08/2009 04:26 AM

It would be great if we could set something like that up - but it would be very very hard...

Maybe we should ask Roy if it would be too hard to add a live chat - or even a link to a free live chat site that we could some how incorporate into this group...

There is usually a few of us on here at the same time...

Betty’s suggested posting guidelines:

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 40 yrs. neuro chronic lyme.

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short....5-6 lines MAX and double space between each one ok. hugs

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit “enter” key twice after each paragraph, also.

Go to left hand corner and mark box to receive ‘all replies’, and click edit send.

Thank you for posting in a manner that makes it easier for all to read and help others.

sorry phil; i can't read anything more than your 1st line of text; perhaps if you break it up for others like me, you will receive more replies. big thanks hugs

Post edited by: Bettyg, at: 12/08/2009 02:17 PM

I started this topic "Being Able to Receive Phone Calls and Home Visits", but it was hard to find after one day. I thought it would be a great idea to start a Lyme Disease phone hot line, maybe on Skype or something. The group would have to get a Skype-in phone number. I can help with this if people are interested.

I think its a good idea. The group leaders often give out their phone # to some of the members. It would require some thought though as we arent always available to man the phones.

phil, this brings up all types of LIABILITY issues in my mind.

i would encourage you to come here and post when you need to talk or send a pm to folks who have agreed to do this.

or if they have given you their home email address

I think we should set up a Lyme Hot Line. It would help a lot of people. There should be a statement on a recording at the beginning of each phone call saying "We are not Doctors and we can't be held responsible for misinformation, but we will do the best we can to help you." The Lyme Hot Line might be difficult to start but I think it's worth the effort. To hear the immediacy of a human voice to respond to a current problem could be very helpful especially when a person is going through a scary episode like I have with vertigo.