posted
Thank you to each and everyone that took the time to post to my "Going In the Hospital" thread.
I am going to print for my Dr.
Since I am going to obviously be my own Dr. for this I was wondering, can I work on treating one co-infec. and move to the next, then move to the Lyme? Or will breaks in between cause me to go back to square one?
The Rheum. that dx my Lyme put me on 100mg Doxy 2x day for 4 weeks. It was HORRIBLE and I feel was a total waste of time??? WAS IT???
Did I kill some spirochetes? But since obviously such a low dose for such a small period of time is not near enough I went through herx's for nothing and I'm back to square one?
I am a little confused on how I must treat. One co-infec at a time or bunches of antibiotics and herbs at a time???
If I can find some improvement AT ALL I will try ANYTHING!!! Probably why I agreed to the LP in the hospital, knowing it was probably a waste of time, money, pain, etc. and it WAS!
Same for MRI.
I am still extremely dizzy before I get out of bed each morning. I have been running a temperature everyday since I have been home.
One morning I actually felt better than the days prior from coming home from hospital, the suddenly, like an ocean wave, instantly I felt I had a fever. I quickly asked my son to get the ear thermometer and yep 101.
I have a temp everyday. Usually comes on as this "rush". RemembertoSmile tells me this is common in Babs.
I am going to print info on Babs for my Dr. and see if there is anyway she can help me by starting with treating that and then moving on.
Thank you all. Thank you Smile for all of your support, guidance, teaching, EVERTHING!!! You are a Godsend!!
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You really need an LLMD. Please do what you can to get to one.
I'm glad you're back from the hospital!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you - I know I need an LLMD. Just so hard here in STL.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
There is an LLMD in your state. I had to fly to NY from Ohio to see mine, so I understand how difficult it is.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The rheumatologist has you on: "100mg Doxy 2x day for 4 weeks"
That dose is really low.
Are you also taking PROBIOTICS and some liver support like MILK THISTLE?
I would also suggest OLIVE LEAF EXTRACT to help in many ways, especially to prevent system yeast infection (candida) from abx (antibiotic) use.
To help relieve the vertigo: MAGNESIUM and also GINGER capsules.
Take all supplements several hours away from Rx.
And take probiotics away from both Rx and most supplements.
------------
Glad you are home. PLEASE be very selective in what you give your doctor. You said you were going to print out that entire thread for your doctor. This will probably work against you.
And it could very likely work against the LLMD in your state, as he was mentioned there - and here and it would not be hard for them to locate him.
Often, when doctors who fail lyme patients find out they've move on to a LLMD, other doctors make trouble for that LLMD. That is why we are protective of LLMDs. MANY have had flimsy reports made about them, costing them thousands of dollars and much stress.
If you take a doctor anything, it is best to keep it to a minimum and have the original article from a medical source. The original source matters tremendously.
I can also guarantee that it won't help. Most doctors don't WANT to learn and, most often, it will just be tossed into the trash or stuffed into your file. They usually resent patients who try to tell them how to do their job and they also look down on patients who search the internet, calling them hypochrondriacs.
I could go on about why it's best to just walk away from ignorant doctors but I'm just too tired. Please trust me on this.
Besides, they cannot possibly learn from one article how to treat you. This is not just about prescribing this or that drug. It takes years to get up to speed, and they have to be willing to learn.
If your doctor is truly interested, just give her the ILADS website - beyond all the other great information there, hopefully, she would explore the physical training:
posted
Yes, DR C is not too far from you and I would highly recommend that you try to get in. He is treating my wife and 2 children now.
Posts: 52 | From Illinois | Registered: Nov 2009
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posted
I've tried Dr. C and we miss each other. Plus the expense I have been told he charges is absolutely insane.
I've heard he is one of the best, but for God's sake doesn't he know there are so many of us out here that cannot get help from ANYONE!!!!!
Is he socking it to our wallets because he knows he is the only one we can turn to for help.
I'm sorry but this just doesn't seem right to me.
I am getting sick of "begging" for help. One shouldn't have to beg for help for an illness that is killing them.
I have suddenly turned into this MONSTER that lashes out at everyone for everything when I use to just bite my tongue. I have been like this for about a week now.
Bursting with rage. And yes at Dr. C too. Shame on him for charging outlandish prices to those of us that so desperately needs his help!!!!
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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posted
I am so sorry to hear that you are going through this.
Some say that to successfully treat for Lyme it could cost $100K! I sure hope not.
Yes, it is expensive to go to an LLMD/ND. However, the expense goes down once you become a patient and get through the testing. When I think about how much we have spent over the years on copayments and other services trying to get a diagnosis, the LLMD is s drop in the bucket.
It may cost a couple of thousand dollars or more to get the testing done and to have your initial intake and follow-up appointments. After that though, it is cheaper.
I have a "Lyme Budget" and shared it with our LLMD. Told them we absolutely have no more than x amount of $ and together we built a treatment plan within our budget.
I know it seems like a crime that these doctors charge so much for their services. The whole thing is upsetting. Instead of getting angry at the LLMD's who can heal us, I try to focus my energy on healing. When I have to rage, I rage at the NIH/CDC and all of the Dr's who brushed my daughter off over the past years. If it wasn't for them, we could get treatment and bill our insurance.
She has been sick for 11 years. Nobody could figure it out. When went to the LLMD for CFIDS treatment, she reviewed my daughter's chart/records and said you have Lyme. Sure enough her tests came back CDC positive for Lyme and co.
This was expensive, but having an educated LLMD who understands the disease and who can heal my family was worth it.
Good luck to you, and I truly hope that you are able to find an LLMD and begin some serious @%& kicking treatment.
Healing thoughts your way.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Lymetoo-I realize he may be cheap compared to others, however, this does not help my situation.
What is my health worth? Every dime I have.
I am on a limited income. Raising a 14 year old on my own.
If I had access to charge cards or getting a loan or whatever, believe me, I would.
I just went through a horrible divorce a year ago that cost me $30,000. This maxed out my charge cards. I am close to entering Bankruptcy due to the divorce and the ex not upholding to many, many things ORDERED by the court. Take him back for contempt, more $$$$$$ I do not have.
I am just in a bad place at a bad time.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
STick a family picture in all the local gas stations on jars for donations for treatment and maybe he-the ex will come around!!! Doc C has saved my life---
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I may just do the family picture in the local gas station for donations.
The ex coming around. He didn't for 14, now 15 years, I'm not holding my breath.
I'll try it. I'm not proud. I just want to get better.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Oh I'm sorry I thought it was a recent split.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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