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Posted 11/14/2010 10:09 AM (GMT 0)
4.5 years

Post Edited (lita31) : 6/25/2014 4:23:19 PM (GMT-6)

Posted 11/14/2010 11:26 AM (GMT 0)
Hi lita,

I'm so sorry you are having problems especially after being at the Hansa Center for all that time.  I remember as a little girl I would also get hives and they were caused by anxiety, yes, my childhood was filled with tensions, anxieties, etc. and hives was one of my reactions from everything going on around me..

I believe that in order for a person to get well, one must face their personal problems and get "healthy" emotionally.. there is no pill or herb for that..  

Maybe you are not happy with your husband or certain family members, I am only guessing as only you  know the truth..   Maybe after 13 weeks at Hansa your family expected you to be totally well, I don't know..  I am throwing this out because once again, if a person doesn't deal with their personal problems then there is no medicine in a bottle that will help..  

As they say "healthy mind, healthy body"... 

Why do people go looking for a pill to always fix everything?  I don't know..  What I do know is when I was a drinking alcoholic that I was miserable and hated myself for "escaping" the realities..   My "pill" was a bottle of scotch.   One day I woke up (shaking from a hangover) and said to myself "do I want to live or die?"..   And I stopped drinking and started dealing with my personal issues..  I took charge of my life which was not easy instead of life controlling me and letting certain people walk all over me...

I don't know if you still have lyme spirochetes, I would tend to think you do not after being at Hansa..  I would guess that you still have lots of toxins which is causing the pain you describe..  I don't know if you are detoxing every day.. 

As far as your mouth, who is they?  What did Hansa say about your mouth?  Sorry for all these questions but I want to help you...

I don't know what else to say since I am not in your shoes...  

Darn, I wish I had a magic answer for you as well as everyone else but I don't..   I am grasping at straws with all my questions to you..  

Talk to us Lita, tell us what's going on at home, with your family, what stressors there are..  Those need to be addressed even if it's not a pretty picture in order to get totally well..  

If you want, e-mail me privately so we can talk..  I am here for you.

Hugs,

Denise

Posted 11/14/2010 6:10 PM (GMT 0)
HI Lita,
There is a possibility that what Hansa provided for you just wasn't the treatment to work for you. Maybe it was just because your body was so stressed out from not being able to rest properly. There can be sooooo many reasons for treatment failure - there has been some papers written about treatment failure & the reasons why.

At any rate I would suggest listening to your NP. If you are still having symptoms, it is reasonable to assume (until proven otherwise) that you are still living with the infections - to me at least.

I couldn't agree more with Deejavu on the detoxing. Please continue to detox as much as you can!!

Please don't apologize for venting & sharing what is going on with your health!!! That's what we are here for!!! I would have never made it as long as I have if I had not found HW!! At least you can usually count on us to understand the desperation you may be feeling right now!!

Please continue to keep posting as you go through this rough spot in your life!!! The only way we can help is for you to keep on 'talking' with us!!

Hang in there, Lita!!

Trav
Posted 11/14/2010 9:29 PM (GMT 0)
Hang in there Lita!! You CAN make it through this, believe it or not!! Anyone who has made it this long with the severity of the symptoms like you describe, can make it through this again!! Obviously the "doctors" you have seen & explained this to didn't believe that you were really in that kind of pain, or (I have to believe) that they would have done something for you - even if it was short term.

The very first thing I think you should do is to take a detox bath like is described in the thread, "New to Lyme?...Start here" It just epsom salts & peroxide (I'm headed in to do a detox bath shortly myself). Don't stay in the bath too long though - for someone in your position I would suggest only ten minutes, or as long as you can possibly stay in a tub. I know that it will cause you a bit of pain staying in one position for that long, but please do your best. I would carefully build up the number of times you take a ten minute detox bath, rather than the length of time spent in one, for a while any way.

Do you have ANY narcotics available? If not do you have a gp that you can get into see quickly to get a script for some pain killers? That has got to be first & foremost - get this pain under control!!!

The next thing I would ask you to think about is the possibility that abx may not be the correct route for you. I was only on one year of abx, but I realized shortly after coming off of them that I was going to need a ore natural route to heal myself. There are actually quite a few people here & on other Lyme Disease boards that are using the natural approach & are getting better. **Just a thought**

Hang in there Lita!!!
(((((HUGS)))))
Posted 11/14/2010 10:51 PM (GMT 0)
Hi Lita, if you do anything to yourself, apart form getting well, you will ruin you families life 10 fold. Please be strong and carry on battling LD, as Trav says keep posting and venting to on HW.....you can recover from this. Be strong.

Mik.
Posted 11/15/2010 12:40 AM (GMT 0)
lita31,

I just saw your post. I just happend to check this web site today (I haven't checked this site in months). I am a patient of Dr. Robson in Tacoma. Dr. Jernigan sent me there (I was treated at Hansa Center for a total of 8 weeks over a period of several years. Got much better with Dr. J but could never get completely better). If I can help in any way let me know.

wacko woman

p.s. If you want to listen to Dr. Robson go to:

http://www.oralsystembiology.com/

Click on 'In the Press'
then click on Power Hour
Click on Past Shows
Click on 'week of Nov. 8th'
Scroll down to November 12th Change your World
and listen to the 2nd and 3rd hour. The interview with Dr. Robbson starts part way into the 2nd hour so you can skip some of the first part, and the interview only goes a little into the 3rd hour.

Post Edited (wacko woman) : 11/14/2010 5:47:22 PM (GMT-7)

Posted 11/16/2010 4:45 PM (GMT 0)
Lita,
I am so sorry you are going through all of this right now!! And a baby too?? You have got your hands full!!

Yes, yes, yes!!!! Do those foot soaks!!! They will help as well! Remember, the dry skin brushing is not supposed to be unbearably painful! If it is, try using something a little softer to start out with. I had to start with a dry washcloth because my skin was being rather sensitive at the time, but it worked & I have been able to upgrade to using a brush and/or a loofa. So start slow, remembering that it should not be a real painful experience!!

And hang in there!! Please do not do any harm to yourself!!! You have a little one that counts on you & this disease doesn't have to win!!!

I do hope this helps some...
Trav
Posted 11/16/2010 5:38 PM (GMT 0)
hey lita, what are you taking for THICK BLOOD.

what does Dr. jerniggan say about thick blood.

I think I have his book her or may have loaned it out. I gotta look.

Is anyone hearing me and Nasalady about our thick blood experience and reading up on the story?

I have to look up this OSB thing too.
I would like to get Jernigan and Schaller and one other lyme doc in a room together and see what they all really thing.has anyone ever read up on Fry labs and their findings on magnesium and how it supports the lyme and causes relapse??

does anyone else out there have a doctor that is saying NO magnesium??

bucci
Posted 11/17/2010 12:23 AM (GMT 0)
lita,

Back pain and leg pain are definitely tied in with the jaw (OSB). A chiropractor cannot do what Dr. Robson does with TMJ. It is so much more than aligning the spine - it is all about strengthening your immune system, getting you breathing again and healing.

You and your husband have gone thru so much - but there is hope and people who care about you. You have been on my heart ever since I read your post.

If you have any questions I will be happy to answer as best as I can.

Be Well,
wacko woman
Posted 11/17/2010 5:38 AM (GMT 0)
Dear Precious lita,

I just read your post and only wish I had seen it sooner. What can I share? What can I possibly say? :( I wish I could just come and sit with you, and be there with you, and if it didn't hurt so much...just hold you.

It was so wonderful meeting you at the Hansa Center when Gary and I were there for a tuneup. I remember looking at the pictures you showed me of your beautiful family on your iPhone. You were so hopeful, and I'm very sorry that things have not turned out differently for you YET. I am so sorry that you are in great pain and suffering so terribly.

I am not a doctor...I wish I were...one with all the answers for you.

I know it is hard to think when in pain and so tired, however I am praying that you are able to do exactly that. Take some deep breaths and think about being calm and listen to you/to your body as you think about what to do. You do have so much to live for. It is about finding the "path" that is right for you. Be patient with yourself.

Things that come to my mind to consider:

Help to alleviate the pain and get some good sleep. Is one of the doctors you are seeing now, that you trust, suggesting medication for pain and rest?

Are you able to see the counselor soon to get important emotional support?

When I had terrible pain in my tailbone, I used a bag of frozen lima beans (I know that sounds stupid). I was surprised the relief it gave me.

Others have already shared helpful info...

lita, you're in my prayers.

There is hope!!!

Rhonda
Posted 11/17/2010 11:01 AM (GMT 0)
Dearest Lita,

I'm so sorry that you are in so much pain...  Maybe focus on the improvements you did have in Kansas and focus on your beautiful baby girl..   Remember, you will get better and your baby girl needs you.    We are all here to help you and give you support because we care about you... 

If you e-mail me I will give you my telephone number here in Vermont and we can talk okay?  I don't know anything about the mouth problem and how it's connected so maybe Wacko Woman or Rhonda can explain this to me.. 

Hugs, hugs and more hugs to you

(((((((((((((((( Lita )))))))))))))))

Denise

Posted 11/17/2010 11:04 AM (GMT 0)
Lita,

As an afterthought, perhaps I can try to help you find a doctor in RI who will help you with your pain...   If we can get your pain minimized that may help you feel better... 

Hugs again,

Denise

Posted 11/17/2010 12:18 PM (GMT 0)
Dear Lita,

Awww, so sorry you were up in pain last night. When it gets so bad that you are contemplating ER or death...choose the ER! Also, here is the phone number to the National Suicide Prevention LIFELINE 1-800-273-TALK. Lita..."death" is just not an option. Picture yourself--hopeful & happy in July and August, hold on to that--it CAN be again! There is hope!

I agree with Denise, the pain has to be minimized. Have you called any of your doctors to get a referral to a doctor in your area who specializes in pain management? Pain in control would be a great positive step.

I tried to email you but you have not given your email address. Please email me and I will give you my cell phone number so we can talk.

Gary and I are praying for you.
Posted 11/17/2010 5:14 PM (GMT 0)

Hi Lita,

Yes call that number.  At the end of the LIFELINE phone is a caring person ready to talk to you 24/7.  It is a great option for support.  They may even have referral numbers for doctors in your area, that among them, a doctor for pain management.

I wish I was familiar with your area and what's avialable there.  It may take me some time...but I'll do some checking around and see what/who I can find.  I imagine others are doing some checking too.  Hey we are here for oneanother.

I am so proud of you for already calling 2 docs...even though they couldn't see you this week.  Did you try to schedule an appt for when there is availability...while at the same time you continue looking?

I sent you an email.

You are precious with a great future ahead of you...even if you are having a hard time seeing it right now.  There is hope!!!

Posted 11/18/2010 5:41 PM (GMT 0)

Heathersdad said...
I cannot believe what just happened. I just spent spent about 2 hours typing a blog and i accidentally bumped my keyboard. That careless move caused me to lose everything. When you go out of the posting mode, it sends you back to the original thread without the post window, and everything that was in that window is gone. It does not allow you to retrieve whatever you were in the process of typing. I am a full grown 55 y.o. man and I could cry right now! Well, I don't want to cry, so maybe I wil throw a tantrum instead, and just smash something.....


It was a masterpiece. I refrained from saying even remotely anything that would offend anybody, unless you are a "conventional dentist". Oh sheesh! Most importantly, I took the time to say exactly what I mean- just how effective OSB can be for Heather and for others. We are having excellent results. Hopefully I will have the time to write it up and post it again tomorrow.



Mod- there is something seriously wrong with this forum. Just because a person hits a key and advances back to the previous window should not delete everything from the clipboard window. This is enough to discourage anyone from posting when they have worked so hard to craft a blog and to help someone. I know that its not your fault. They need a computer techy website person to fix this.

Don, I know EXACTLY what you mean....this has happened to me WAY too many times! I recently decided that, whenever I get ready to type a lengthy post, I will type it first into a text file on my computer, saving it frequently. When I'm happy with it, I copy and paste it into a post window on the forum. This has really helped to slow the rate of loss of my "brilliant" posts (LOL!), because they're saved elsewhere!

JoAnn
Posted 11/18/2010 11:57 PM (GMT 0)
Heathersdad,

I am so sorry your post got lost - please post again. I would like to hear about your experience with OSB.

Lita, I sent you an e-mail. I know how hard life can be and I know what it like to just want to give up. Lots of people on this board understand that. Hold onto all the people here who are reaching out to you.

Denise - I would love to talk with you! Since you have moved I don't have a phone number for you. If you send me one I will call you (or call me). It would be good to catch up.


Be Well,
wacko woman
Posted 11/20/2010 6:21 AM (GMT 0)
Lita, I've never stopped praying for you and sending you my well wishes.  You touched my heart last summer and I think of you and wonder how you are doing often.  Your courage and generosity in sharing your experience helped me and I am sure has helped many others.  It makes me sad to hear how you are suffering right now.  I hear how tired you are of this fight to feel well.  I wish it could be different; it's so hard when things are bad.  And you've tried hard to get better (have said those words myself in a moment of anguish recently).  But it does sound like some good things are around the corner.  I have a long history with jaw problems and the awful pain that can cause.  It can get better with the right treatment and what Heathers Dad recommends is something I want to do, too.  In the short term, have you had any physical therapy for your jaw?  That lessens my pain when the jaw pain (and associated facial and body pain) gets bad.  It may also help you decide if the problem originates there.

Is it possible for you or someone in your family to contact the chiropractor to let them know how much you are suffering?  Maybe you can get in now.  I saw an upper cervical chiro for years, but it was no longer working for me once the Lyme got really bad.  Some adjustments made me worse.  Then someone told me about atlas orthogonal chiropractic; it's just right for me.  Gentle and effective.  When I first went I was in the office 3 or 4 days a week.  For months.  Then I started being able to go only two days a week, sometimes only one.  Now I'm going two weeks between visits and doing well.  I've been in a place where the pain was so awful I didn't want to live anymore; I'm a long way from there now.  There is hope for you.  You've tried a lot of things, but maybe the complete answer for you still lies ahead.  Maybe you didn't waste all that time and money, but you're just not finished yet finding the answer.  I think the detox recommendations are important.   FIR sauna if you can tolerate it even for just a little while.  Can you stand up in it if sitting is too painful?  Foot baths.  Will it work for someone to help you in and out of the bathtub so you can take a detox bath, or is that too painful right now?  Doing even a tiny bit is better than not doing it. 

It sounds like you trust your ND.  Can she recommend a doctor for you to see? 

My other thought is that you need something to alleviate the pain right now.  If an ER visit would accomplish that, it's the best thing you can do.  Chronic intense pain is wearing and debilitating.  I don't think anyone should have to live with that if there is a medication that will give them a break.  I have a close friend, my best friend from childhood, who is very sick.  Her pain was terrible and permeating.  I think the pain alone would have killed her had she not gotten help.  She is doing better now, taking diludad three times a day.  It's not something you'd want to do forever, but you need a break. 

Finally, please don't think you are useless and helpless.  That's just not true.  Your strength has given me strength; your courage has given that to me.  You don't see it, but you make a difference.  And please don't think things are hopeless.  You can do this; you just need a break from the pain and a direction you can believe in.

Take care

Rose

Post Edited (Willowrose) : 11/19/2010 11:25:26 PM (GMT-7)

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