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
 

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).]
 

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
 

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!
 

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.

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
 

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.
 

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!
 

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

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Alex