Anyway, my suggestion is to have your friend call the clinic back and ask them if they would be willing to try her on a trial of antibiotics...many LLMDs do this for diagnostic purposes anyway since lyme should be a clinical diagnosis...a person's reaction to antibiotics can give them some clues as to whether a person has it or not. I know how 6-7 weeks can seem like 3 years when you are so sick...I bet the clinic will consider this...

Take care and I hope your friend finds relief soon.

What a good soul you have to want to help others. Your friend is lucky to have you.

Since you are most familiar.. and I am at a loss not knowing the specifics...

Please tell me what YOU think is the best way to help?

Is she severely depressed and needing support in that area?

Is she in pain?

Does she need help to intervene with the waiting time for the next appointment?

Does she need someone to talk to that will give her hope?

What can we do to help?

I know folks here will do all they can... but we need a bit of direction from you to get us started.

OK?

Please let us know.. and tell your friend..

Tincup says..

"Don't be peaking into any cannons. It can be rough on the hair-do."

Yes, she does need help in all areas. She lives on government assistance and some help from her family. She is afraid that as soon as her medicade stops she will have to go to a nursing home for the rest of her life (she's only in her 40's) because its based on being nursing home eligible.

She needs to get treatment going as soon as possible but is afraid she scared the Lyme doc when she emphasized the parasites that were/are eating away at her. From what she told me, it sounded like the doc does not want to touch her with a ten foot pole due to this. He said they would call back in 6 weeks when the test reults came in. It's been about 5 weeks since the appointment.

Yes, she is contemplating ending her life and I don't think her situation is being taken as seriously becuase she is too sick to advocate for herself. She is also frightened. She fears making the doctor angry by asking him to help her by getting her back to see him sooner or putting her on meds. Hers is a desperate case both medically and financially. She is too sick to go to bat for herself and her family is her elderly father who also cannot advocate for her.

My questions are:

1.Is there any way she can get her meds paid for if she qualifies for govt assistance? How would I find out?

2. Is there a Lyme advocacy group that could help get her the two hours to the appointment, make sure she gets treated properly. She has never had treatment for Lyme.

3. Is there anyone who will help her figure out how to get on Lymenet so she at least can come her and see she is not alone?

4. She cannot travel very far. Even the 2 hours to the clinic was hard on her sores. She went all that way to be seemingly brushed off. She is basically home bound so it is hard to get her any real help. Any suggestions?

3. Is there anyone who will believe her that she has parasites? This is a big deal to her and she feels afraid to open up about this for fear of being labeled as crazy. She is definiately not crazy and she does have some serious skin things that are real. We all know that Lyme itself can make a person feel "crazy" and have crawling sensations, but she is truly scared. It is hard for her to trust doctors, understandably. I have told her not to give up and that docs are human and sometimes we have to use them even if they don't "get" all we are going through.

She says if the clinic will take her as a patient she will do their treatment, yet in the waiting time she is feeling like they gave her the brush off and don't want to touch her with a ten foot pole. That is the feeling she got when she left the clinic after asking why they weren't putting her on anything or giving her anything to start with. How can she deal with this diplomatically so she gets treated?

Hope this is not too much for you all to digest but these are the issues she is facing and could use some compassion and help with.

I am bone tired but will post a few things before I drop. Sorry.. once my brain says "no more".. it usually means it.

You said...

1.Is there any way she can get her meds paid for if she qualifies for govt assistance? How would I find out?

Try the site here for free and/or reduced priced meds. It will take some effort on your part... but a number of folks have been helped.

http://flash.lymenet.org/ubb/Forum1/HTML/004031.html

2. Is there a Lyme advocacy group that could help get her the two hours to the appointment, make sure she gets treated properly. She has never had treatment for Lyme.

I need to know where she is located to help with that. What town and state?

There is sometimes buses that are used by seniors and disabled folks that are provided by counties where folks live. This MAY help? Please check her local county senior center for help with that.. or the states transportation system.

A local church may have members that can help transport. The Salvation Army may have a list of available resources also... so call them if you can... or let me know where she is so I can.

3. Is there anyone who will help her figure out how to get on Lymenet so she at least can come her and see she is not alone?

Yes.. I am sure one of the members who is more computer literate than myself will offer to help. I will make a separate post and ask.

4. She cannot travel very far. Even the 2 hours to the clinic was hard on her sores. She went all that way to be seemingly brushed off. She is basically home bound so it is hard to get her any real help. Any suggestions?

Start by contacting the Salvation Army and/or Red Cross and ask for help... and if they don't help.. ask them who can. They should be able to provide some good leads.

There should also be a county mental health department in her area. Folks with low income and/or no insurance can NORMALLY have access to some help.

And don't think I send her there because she is crazy.

Hmmmmmm.. however... if she is YOUR friend.. maybe she IS a bit touched? HA! Just kidding!

The mental health professionals should be able to get her help with several things. NOW is the time to ASK for help. Don't worry what they think.. start getting ALL the help she can... ASAP. They will also be able to help her apply for any benefits she may be entitled to.

3. Is there anyone who will believe her that she has parasites?

Instead of approaching the fact by saying.. "I have parasites".. perhaps say.. "WHAT is this skin problem?"

Then show them.. and let THEM come up with an answer. You know how doctors ego's can be. Let THEM figure it out.

You said... "She says if the clinic will take her as a patient she will do their treatment, yet in the waiting time she is feeling like they gave her the brush off and don't want to touch her with a ten foot pole."

That is normal. When we are scared.. we feel a great deal of desperation. We wonder if anyone WILL help us.. or CAN help us. I have been through that.. and KNOW how horrible it feels.

Tell her not to worry. Worry never cured Lyme... and I am living proof. If it did.. I would have had enough "cure" saved up to help all of us.

If she went to the J Clinic.. they should help her no matter what kind of an impression she thinks she made.

If you have ANY problems with that.. let me know. I will do my best to rattle some cages and get her help without being offensive.

You said.. "How can she deal with this diplomatically so she gets treated?"

My bet is she has a 90 percent fear level going on and messing with her brain.. and 10 percent chance of it actually becoming a reality that they won't treat her.

Did that make sense? I'm sorry.. getting very tired.

In other words.. tell her to NOT worry. She is in the "final stages" of waiting. She has made it through the hardest part. DON'T GIVE UP NOW!

And.. if by chance.. all fails.. which I don't think it will.. but if it does...

Keep in mind.. I was totally bed bound for years. And I held on to the thinnest straw you could imagine. FINALLY I got help.

And I didn't have all these guys to help me back then. She has a MUCH better chance of getting help than many of us ever did.

And.. after getting help..

As Toby Keith says..

"How do you like me NOW?"

I will check in tomorrow night after my long day going to my doctor. YULK!

Let me know what help is still needed...

And let her know she now has LOTS of folks who have been through this before.. and they are on HER side.

I know some of these new friends here are pretty whacky.. like Lymetutu who goes around dropping her drawers for the whole world to see...

BUT.. if we can love HER.. your friend will be OUR friend too.. no problem.

Hang in there!

Both of you.

OK?

email me at dequickert@omsoft.com

Dan

I am so sorry about your friend. I bet she feels really fortunate to have your support. I hope she can get to Lymenet soon to get some more help and support!

I see Tincup posted on the free/reduced prices med resources. The pharmaceutical companies and other programs can really help in that area.

Have either of you been in touch with her nearest support group? Perhaps they are aware of other resources to help her.

As far as the doctor, if she has symptoms consistent with Lyme, it would probably help for her to focus on that at the next appointment.

HUGS,
Cheryl

------------------
Lyme Disease Information By Email:
http://groups.yahoo.com/group/lymeinfo/
Lyme Disease Information Online:
http://www.lymeinfo.net
FEB 2005- New website coming soon!