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cindy lou hoo
Regular Member


Date Joined Apr 2010
Total Posts : 28
   Posted 4/4/2010 11:17 PM (GMT -7)   
I have most likey had lyme or babesiois  a very long time.  Been on antibiotics for a year now.  and stopped taking them for a while... and of course feeling the pain!!!  Dr.'s say I have Lupus, fibro, rhuematoid arthritis.  Right now it hurts to type.  Can't work anylonger and am just at the point of giving up. 
Does anyone get social security? if so how?  I didn't want to go that route, but I don't have much of a choice now. 
I am reading some posts about detoxing.  Never done that and don't know what to use or where to start.  Can you help?
what insurance pays for IV's?  any of them? 
what medicine will help me best?
please help.  I just want to die.
 
please.
 
Cindy

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/4/2010 11:51 PM (GMT -7)   
Hi Cindy,

Welcome to the forum! I am sorry you are dealing with Lyme and all of it's crazy symptoms. Most of us were told we had Fibro(which some of us do have from Lyme), Lupus, MS, and the list goes on. Sometimes Lyme Disease can mimic some of these diseases as well.

If you look at the thread titled, "New To Lyme?....Start Here!", you will find all the information you need about detoxing. There is also other valuable information you may be interested in. This thread is located at the top of the Lyme board.

As far a social security, give me a few days to look up the information for you. I have information on disability, but not social security.

It is hard to say if a certain insurance will pay for IV treatment until your doctor submits it to your insurance. Do you have a Lyme Literate Medical Doctor? It is important that you see one since they are specialists in treating Lyme.

LLMD's usually use a combination of medicines to treat Lyme Disease. It can range from Doxycycline, Amoxycyline, clarithromycin, etc. For Babesiosis, treatment is an anti-malarial combined with an antibiotic--often Mepron with Zithromax (or Biaxin or Ketek). If you look in that thread I posted above, you will find great information on co-infections, their symptoms and treatments.


**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 4/5/2010 1:00:26 AM (GMT-6)


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 4/5/2010 5:05 AM (GMT -7)   
Cindy,

Sorry to hear that you are not feeling well. Maybe you could share some of your story to help us understand when you first became ill and what kind of antibiotics you have been taking this past year. What kind of symptoms are your experiencing?

Hope that you get some answers and start feeling better soon.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


cindy lou hoo
Regular Member


Date Joined Apr 2010
Total Posts : 28
   Posted 4/6/2010 7:40 PM (GMT -7)   

Hi All

I am not sure when I first got infected.  I don't remember a bite or rash.  There seem to be some talk that maybe I got this from my Mother.  She is infected too, and so is my sister.  I fear my daughter has it as well.  I see her getting some of the same symptoms I have. I was diagnosed a year ago and begun antibiotics with a lyme dr. in Missouri.  But first I spent years having Dr.'s telling me I have Lupus, Fibro, chronic Fatigue, depression, anxiety disorders, Rheumatioid arthritis, antiposhpalipid symdrom, mitro valve prolaps, and stomach gas (of all things).  Now then, I am seeing double alot, along with spots in my eyes, and little floaty things that look to be swiming in my eyes.  I got better with antibiotics for a while, but they don't want me to take each one more than a month or so.  I read alot of people take more than one at a time, and for longer periods at a time.  I am confused about this and would love to hear more from others. 

Lately I seem to be slipping back into the same symptoms I had last year... swelling achy mucsles, headaches, swollen glands, fevers, fatigue etc.  not sure what I'm doing wrong.  I havent really detoxed, but read the info at the top of the forum. 

This diesease has consumed my life and taken it over.  I can't work much anymore and I feel like all I do is whine!  who wants to live with that?  Trying hard to believe and hope for God's healing, but i'm struggling to keep my head above water (and my marriage).  I need to get on disability but not sure if I qualify or even how to go about that.  I am assuming there are people here that have.

I live in Illinois and have been seeing a Lyme Dr. in Missouri.  If anyone knows of another in the facinity I would love to know about them.

thank you for your reply

Cindy

 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/7/2010 2:04 PM (GMT -7)   
Hi again Cindy,

Have you been checked for the co-infection Bartonella, also known as Cat Scratch Fever? You have some of the same symptoms as me and I was diagnosed with Bartonella. Here is a list of the symptoms it causes. Headaches and fever are also symptoms.

Bartonella:- also known as cat-scratch fever is a bacterial infection. Symptoms include swollen, painful lymph nodes, muscle and/or joint pain, nausea, vomiting, chills, anxiety, insomnia, red rashes. Treatment is often Levaquin or Rifampin.

If you indeed have this co-infection and were never treated for it, this could be the reason you are feeling bad again. Usually LLMD's treat co-infections first.


**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 4/17/2010 9:20:01 PM (GMT-6)


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 4/7/2010 3:19 PM (GMT -7)   
Hi Cindy,

I have been dealing with lyme since last June. Even after 3 months of antibiotics, I have not been able to get rid of my lyme symptoms. I will see a new LLMD this Friday and anticipate getting into some new combinations of antibiotics. I fear that my lyme has become chronic and I too will have to treat agressively to restore my health. You might want to see an opthamologist regarding your vision issues.

This disease has taken over my life this past year too. I still work full-time with great difficulty and spend most of my non-work time recharging and searching for a cure. I hope that you feel better soon and find a treatment that works for you.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


cindy lou hoo
Regular Member


Date Joined Apr 2010
Total Posts : 28
   Posted 4/13/2010 6:54 PM (GMT -7)   

Hi Cajun girl

yeah I got it too.  maybe i should try rifampin again.  my hands hurt so much at times i can bearly use them.  I read alot of post and it doesn't seem that anyone gets healed.  does that ever happen?  Have u tries IV antibiotics?  do you think they help better?  I have an appointment with my Lyme Doc.  in May and think I'm going to ask him to put me on them. 

It seems most people are taking more than one antibiotic at once.  My doc didn't do that.  Should he?  Why do people take more than one at a time? 

Thank you for your reply's.  I commend your devotion.smile

Cindy


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 4/13/2010 7:35 PM (GMT -7)   
Cindy, Dr. C in MO (I assume is your doctor) is a "one antibiotic at a time" doctor. My wife and I both used him in the beginning when we were first dx. A lot of people like Dr. C, we certainly did, but his approach to treating lyme disease is not typical of the way most LLMDs treat.

You are right about only getting one abx and not multiple abx like you hear others get. That is his treatment philosophy because he believes if you are given too many abx at one time, you will herx harder and have more side effects which will possibly discourage you from keeping up with your treatment and eventually give up and quit.

It is my understanding that Dr. C will give you multiple abx if you insist on it as long as you understand the ramifications of taking more than one abx at a time. During your next appt tell him that you'd like to do multiple abx and he'll probably allow you to do this. He might discourage you from doing it at first, but from what others have told me, he'll go along with it if he feels you'll commit to following his instructions.

I didn't do well on abx and was treated with natural medicine from Dr. Jernigan. I'm sure you've read about Deejavu and myself who both have gotten well (I'm still getting better) on this protocol. You can do it in his office, which I recommend because you get treatments and therapies you can't get from doing the protocol at home. He also has a protocol you can do at home. If you purchase his book, "Beating Lyme Disease" by Dr. Jernigan, the protocol is all spelled out in his book. You can get the book here www.hansacenter.com/beating_lyme_disease.php

While you're at the website, look over the treatment and therapy protocol and give some consideration to it in the event you decide to try the natural approach in the near future.

The best thing you can do for yourself at this point is start detoxing. Unfortunately, Dr. C doesn't put a lot of emphasis on this. That's true with many LLMD's. Many of them tend to give you a handful of abx and have you go back for liver enzyme tests from time to time, but they don't always give clear information or instructions on how to detox which is so very important.

Dr. Jernigan's detox bath is posted on this forum where it says, "New to Lyme?....Start here!" Here's the link to it
www.healingwell.com/community/default.aspx?f=30&m=1606610 It's the second post on the thread.

Sorry you are going through so much suffering. We are here to help. Keep us posted and keep asking questions and in time you will get better!

Gary

cindy lou hoo
Regular Member


Date Joined Apr 2010
Total Posts : 28
   Posted 4/16/2010 9:15 PM (GMT -7)   

Hi Gary

I so appreciate all the info you've shared.  I can't tell you what a relief it is to talk to people that don't think I'm nuts.!!  How long have u and your wife had lymes?  Dr. C says I've had this most of my life if not from birth.    I've ordered the book you have recommended... can't wait to get my hands on it.  Got stuff for Detox bath, but still looking for the brush that's recommended.  Do you know where I might buy one.

This might be a personal question, but worth the risk,... Are you and your wife christians?  The reason I ask is that the clinic you recommended seems a little like another clinic I went to in Chicago (they think everyone has leaky gut) and performed some strange things with magnets.  scared me a little.  They talked about being there for two weeks.  Did you do that? if so dare I ask how much that hurt your wallet.??  My wallet is getting very tight these days, as my husband and I are both physically struggling.

On a positive note... I'm still sucking air today! and that's always a good thing.  Again, thank you for all your info.  It is a breathe of fresh air!

Cindy


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 4/17/2010 6:28 AM (GMT -7)   
Hi Cindy,

Glad to know you ordered the book. I think you will find it very helpful and if you decide to do the protocol at home it is pretty easy to follow. In fact, I highly recommend you try the protocol at home and save yourself several thousand dollars. You do get therapies and treatments at the center that you can't get at home and the people at the center are wonderful to work with, but like Denise did, you can do the protocol at home and get very good results.

You can find a natural bristle brush at your local health store. That's about the only place I know that sells them unless you buy them online.

Yes, my wife and I are Christians. Dr. Jernigan is a Christian too, and a very fine man. I don't know if all of his staff are Christians, but they are are very warm, friendly and caring people. It's not a weird place at all like you may have experienced elsewhere. Have you checked out his website www.hansacenter.com/index.php and read about his treatment protocols and philosophy?

They have a two week plan that cost me about 7 thousand dollars. Right now, until the end of May I believe, they have a special price of 5 thousand dollars for the same treatment I got. Is it worth it? Well, I got better on the treatment protocol, but I might have gotten better by just buying the book and doing it at home too. Although, there are some good therapies you can't get at home, some of them you can get at your local chiropractor's office, such as foot detox, lymph drainage massages, infrared saunas, etc. Most places don't have some of the more elaborate equipment they have at the Hansa Center, but I think you could still get well without spending 5 thousand dollars if you follow the protocol. That's what I'd suggest you to do first, then if that doesn't work you could call and make an appointment to get the full therapies and treatments they offer.

I agree with you, it's always a good day when we can wake up to a new day and "suck air". :) Hope you have a great weekend. Anymore questions, feel free to ask.

Gary

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 4/17/2010 9:37 AM (GMT -7)   
Hi Cindy, I'm so sorry you're not feeling well.

I didn't read all of the posts above and apologize if I'm repeating any information. I highly suggest that you retain an attorney to handle your social security claim. You will not need to pay one penny until benefits are approved and only then does the attorney representing you get a small portion of your first check that is capped at a certain amount. Trust me, it is well worth the small price to pay since most claims are denied. One you retain an attorney you will not need to have any contact at all with SS and the attorney will address all communication, requests, issues, etc. If you can, try to see if you can get an attorney who specialized in difficult cases such Lyme Disease, CFIDS, Fibro, etc. Retaining an attorney was the best decision I made. I applied for SSDI in January 2005, was approved within months and received my first check in May 2005. This was before I was diagnosed with LD and was diagnosed with CFIDS/Fibro. Do not start the claim process on your own. Some are successful but the odds will not be in your favor.

I'm sure Cajun Girl will provide you with more information but here is a good site that will answer many of your questions: http://www.scottdavispc.com. You might even try calling this attorney's office to ask if he can refer you to attorney in your area. Although he did not represent me, I've spoken directly to him in the past and he was very helpful.

As for the iv's, it's a crap shoot but I believe it would be in your best interest to have a llmd support your claim. I have Empire BC/BS...which by the way is considered one of the worst when it comes to approving iv's for LD...and was one of the lucky ones who was approved for 6+ months of iv rocephin, 2 months of iv doxycyline and 12 months of in-home nursing picc care. During the breaks in treatment and while waiting for approval to continue iv's, they continued to provide in-home picc care. From what I've been told this is highly unusual but I'm proof that it is possible.

Good luck!

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 4/17/2010 9:42 AM (GMT -7)   
Cindy, I forgot to mention that you can contact stephanie@turnthecorner.org to request a listing of llmd's in your area. Again, wishing you the best of luck with healing. Sometimes it can be a long, hard road but you'll get there!

cindy lou hoo
Regular Member


Date Joined Apr 2010
Total Posts : 28
   Posted 4/17/2010 8:13 PM (GMT -7)   

Hi Gary

Yes It has been a beautiful weekend.  I love the spring,  Everything is coming to life again.  I see the Lord everywhere!

I am willing to go to what ever length, including spending $5000 or more if needed, but convincing my husband to go to another clinic might be a struggle.  He was not keen on the last one.  Neither was I. 

No one says how long your supposed to do the Detox baths.  Perhaps I will learn more when I get the book. 

Again, thank you so very much for all this info.  I am having my husband read your letters too.  He is protective of me since he has been trained as a nurse.  he still thinks in terms of regular medicine and traditional Dr.'s.  Hard to convince him otherwise.  We haven't been married very long, so we have along way to go with our communication skillseyes

Cindy

 

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