LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » MS and LYme . Need ans. Making a fool out of myself about it.

 - UBBFriend: Email this page to someone!    
Author Topic: MS and LYme . Need ans. Making a fool out of myself about it.
Green Darkness
LymeNet Contributor
Member # 985

Icon 1 posted      Profile for Green Darkness     Send New Private Message       Edit/Delete Post   Reply With Quote 
A lady in our town has ms. Her husband is an avid fisherman. Speaking with a caretaker of hers at one time told me the patient remembers a bite. Just mentioned my llmd to her husband and gave him my llmd's card. Now, just ran into her new caregiver and feeling crazy because I had to give my opinion that I'd still have the patient see a lyme specialist. Did I go overboard? Feeling a mess because suicide (the patient) is an issue right now. Makes me sick to think she could be misdiagnosed. What does anyone else think? Also, how do you keep from getting upset when you think everyone has this disease?????
Posts: 560 | From PA | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
krazykt1
LymeNet Contributor
Member # 3739

Icon 1 posted      Profile for krazykt1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Green, If that qualifies us for the "making a fool of myself" label, so be it. I'm of the thinking that I don't really care what the med. machine calls it, if the shoe fits...
Posts: 740 | From BC Canada | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
rdcallen
Member
Member # 3987

Icon 1 posted      Profile for rdcallen     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have the same problem. Wanting to tell people they may be misdiagnosed but don't want to go around saying everybody has it.

My good friend was (mis)diagnosed with MS the same time I was diagnosed with Lyme. Her mother has Lupus and now her mother's husband has Lupus. Seems like someone would make the connection.

And I sound like an idiot if I tell them I think they might have lyme instead.

So what to do?

I think you done right. It can be said so that it is concern for the patient and not trying to push an issue.

Just frustrating because we want people to get help and they dismiss us.

I want to praise your efforts and let you know you aren't alone in this very delicate task. It is literally like doing brain surgery since people have been so mis-educated.

Good luck and keep trying. One day someone will listen.
Cathy


Posts: 71 | From Warren, Mi, USA | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
caat
Frequent Contributor (1K+ posts)
Member # 2321

Icon 1 posted      Profile for caat     Send New Private Message       Edit/Delete Post   Reply With Quote 
hi Green Darkness,

No, you did the right thing. Here is a study you can print out and show them. It might help if you explain it to them also. You can print this out for them as well if you like.


http://www.home.pon.net/caat/lyme/cyst_phase/MS_study.htm


Years ago people looked into a spirochetal cause for MS but could not find any organisms in the central nervous system. Now they have higher powered microscopes and can see the smaller cyst (egg) forms of spirochetes much easier.

They have found both lyme and other unidentified spirochetes in the CNS of some MS and Altimers patients. It doesn't really matter if a spirochete is a lyme spirochete or not- the treatment for any nuero (brain, CNS) spirochetal infection would be the same or very simular. Other bacteria can cause MS symptoms as well- clamedia (sp?- it's not the STD- it's a different one) and others.

If they suspect a spirochetal infection it is important to consider the cyst form and how to treat that. Lyme has a life cycle very simular to H. Pylori and should require antibiotics which address both adult and cyst phases in that life cycle. This is important to keep in mind no matter what doctor they might see.

They may need to find an LLMD in order to be treated as this stuff is relatively new and not yet accepted by the powers that be.

Many people with nuerological spirochetal infections have had a *lot* of improvement on abx which crosses the blood brain barrier. And some really have been cured- especially if co-infections have been addressed.

[This message has been edited by caat (edited 29 October 2004).]


Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002  |  IP: Logged | Report this post to a Moderator
beach4so
LymeNet Contributor
Member # 3832

Icon 1 posted      Profile for beach4so     Send New Private Message       Edit/Delete Post   Reply With Quote 
Green Darkness,

You deserve a great big hug for trying so hard.

I have been told i am obessive over Lyme and "not everyone has it". I understand that BUT like krazykt1 said if the shoe fits.

I am working on my cousin right now, she is running parell to me for symptoms and she lives in Missouri where Dominic and I were bitten sooooo.

I think I am finally getting her to understand. In Oct. when I was up there she was asking alot more questions and told me she would talk to me about getting tested at christmas time when we went back.

I try to keep this thinking going:
1) I will tell them general info.,
2) If asked give them more info but not too much to overwhelm them
3) Pray they call me or ask for more help.

In my thinking (MY OPINION ONLY) if you push to hard and they don't even want to consider it then you are just going to turn them off even more.

I do think you are doing a totally great thing

Keep up the GREAT work!!!!!
Starr


Posts: 698 | From Louisiana | Registered: Apr 2003  |  IP: Logged | Report this post to a Moderator
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019

Icon 1 posted      Profile for TheCrimeOfLyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just ran into the same thing at work. My bosses buddy who comes in often, did not show up one day to see my boss.

My boss said "Well, his wife is sick, she has RELAPSING AND REMITTING MS" ( Yeah bite me, she has lyme)

I was amazed at my boss because he knows how much I talk about it and how often I have said MS CAN BE lyme, etc. Well, he then proceeds to tell me "Oh , dont tell him I said anything, he would be really peed off"

When he DID show up to talk to my boss, my boss was in with a client, and honest to goodness, I got evil ( in a good way). He said that I looked tired

and I said "Yes, from helping to take care of a friend who has MS, but it really turned out to be lyme"

His eyes all lit up and we really got into this long conversation about it. When my boss came out to call him in, he was so engrossed in what I was saying, he didnt even hear my boss call his name.

I gave him a few LLMDS names and numbers as I keep my list on my work computer for those that need help during the day.

For the way he left, all excited, I really think he was going to do something for his wife.

By the way, he was in so that my boss could prepare his wifes Last Will and Testament and Living Will.

I did good.

Keep up the work. You WILL get through to someone!


Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Marnie
Frequent Contributor (5K+ posts)
Member # 773

Icon 1 posted      Profile for Marnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
There is more than one disease causing bacteria that depletes Mg. Bartonella is another. The symptoms are all Mg deficiency symptoms. Thus the confusion.

Mg is needed to make cholesterol and cholesterol is needed to make the myelin sheath (insulation around the nerves - MS prob.)

But...most of us are already Mg deficient due to our diets (too much calcium, cook minerals out of veggies, stress,etc.)This is fact. We lack the "ingredients" or are too low to fight infections. IF we have enough Mg and Ca stored, we are far more capable of healing.

It takes Mg and Ca to make healthy antibodies to constantly fight off the bugs and viruses we are exposed to every second.

We stress our immune systems to the hilt.

Staph, it has been recently discovered, uses iron.

The bugs pick their fav. mineral to deplete.

They need a certain mineral...we need many, but we need Mg and Ca (and the rest)...not only to survive, but to kill off the pathogens (disease causing bacteria). Mg, Ca and K are the absolute key minerals to keep us healthy. The B vitamins are CRITICAL too and we make many of them ourselves...if we have enough "friendly" bacteria in our bowels...which are destroyed with abx.

Restore the balance.

P.S. Dr. Andrew Weil said that Lion's Mane mushroom can repair the myelin sheath.

Naah. This beta glucan (beta means neg. in Greek; glucan, glycogen has a pos. charge)produces hydrogen which INactivates PFK (rate controlling for glycolysis)and kills the bugs. Then the body is capable of healing itself. Restoring the myelin sheath.
This does NOT happen overnight! It takes time for the body to heal itself. The mushrooms are also used in Japan to fight cancer - a virus which also follows the glycolysis pathway.

The "healthiest" foods for us contain minerals and vitamins. Positive charges and negative charges. This is the reason why a vegetarian diet is so healthy. Exception: B12 must be supplemented.


Posts: 9424 | From Sunshine State | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
lymiecanuck
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
I think it is a good thing to mention these things to people.

That's about all you can do, push it with family though and close friends.

I have the same problem. My friend was bit by something 2 summers ago, and I beleive she has lyme and she knows everything I have been through, and she doesn't pursue it.

I have another friend who is a farmer, and after complaining about back pain and numbness I urged to go to doc and get checked and she was dx'd with ankolysing sponkodyist(sp). No doubt, she has the parasotes that cause this but she could have lyme, because of the farm and 200 abx fed cows.

She just found out she is preganant with TWINS and I am very excited for her but worry. I have not mentioned the lyme idea, only kliebassa, cause her water supply is questionable. The other two kids have had cyrptospordium and camplyobacter virus.

But she feels they are immune to the things in their water, I find it harder to get through to the people who think "like the old school". If it doesn't kill you, it will make you stronger. I find this a big problem when getting people to listen to me about their health.

Lymiecanuck


IP: Logged | Report this post to a Moderator
Rita
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
It is the curse of the LL to be right in a sea of ignorance, greed, misinformation and egomania. Sometimes we pay a price for our knowledge.

You did the right thing. Better to feel bad about something you did rather than something you didn't do.

Art Doherty has articles in Geocities about Lyme misdiagnosed as MS and other diseases.


IP: Logged | Report this post to a Moderator
cbb
Frequent Contributor (1K+ posts)
Member # 788

Icon 1 posted      Profile for cbb     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Green Darkness,
I think you definitely did the right thing.
You're doing a great job, especially considering all you've had to deal with.
You've been an inspiration to me.

About 10 years ago, I told my grown daughter that I didn't know if I should give a neighbor info about Lyme.

She said, "Mom, if you don't tell her, you've made a medical decision for her.
Give her the info & let her decide what to do with it."

The lady was diagnosed with Lyme disease!


Posts: 4638 | From South Carolina | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
Alex1950
Member
Member # 6308

Icon 10 posted      Profile for Alex1950     Send New Private Message       Edit/Delete Post   Reply With Quote 
Send out the message to all the geese, pigs, cows, birds, frogs, and ducks.

If only one of them follows up on your advice, you saved someone from a lot of pain and suffering.

------------------
Alex


Posts: 77 | From Chester NJ 07930 | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.