New to Lyme and Overwhelmed

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scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 1/27/2009 5:53 PM (GMT -7)   
Hi All, 
 
I was diagnosed with CFIDS/Fibro and have been on disability since June 2005.  Since then I've been getting progressively worse, especially the fatigue, flu-like symptoms and neuro/cognitive issues.  I'm practically bedbound/housebound 95% of the time.  I recently checked a list of Lyme symptoms and realized that I have 60 out of 75 of the symptoms listed.  A SPECT scan a few years back specifically indicated "encephalitis" and "Lyme" but somehow this was ignored by all the doctors because I tested negative on standardized Lyme tests.  Unbelievable! 
 
Anyway, right after checking the Lyme list of symptoms last week, I immediately made an appointment with a top lyme specialist in Manhattan.  My appointment is next week and I'm very concerned over possible treatment and costs.  I have pretty good health insurance (Empire BC/BS PPO that includes out-of-network) but after all I've read, realize that this does not mean much when it comes to treatment of chronic Lyme.  I plan on charging my initial visit to a credit card but am not sure what I'm going to do after that.  Has anyone had any luck in getting their treatments covered by insurance?
 
Of course I am overwhelmed and to be honest scared to death.  I'm not sure what scares me most though -the thought of getting a port in my chest or the thought of not being able to afford getting a port in my chest and becoming even sicker. 
 
I apologize for babbling and wish everyone here either continued or better health. 
 
Thanks.

northnode
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/27/2009 6:37 PM (GMT -7)   
It sounds like you have a good first step plan. My insurance is similar in that is does cover some out of PPO and my Lyme doc is covered with the 80% - she bills the insurance.

The Western Blot test was expensive $395 or something like that. I did put it on my credit card but insurance BC/BS did reimburse me for 80% of that. It was worth it for me since it confirmed that I did have Lyme. I don't see my doctor too often once I got started on the antibiotics -- maybe every 6 weeks. I am just taking pills -- so it's just ride the wave of treatment -- cope.

These forums have been very helpful to me.

The big hurdle for most people seems to be getting a diagnosis and then getting in to see a LLMD.

I know I am better after three months on antibiotics, but I have a few more months to go. My meds are partially paid for, but the ones I am on are not expensive.

I am reassured by friends who have had this that there is life after Lyme -- people do get better, although some, of course, have a rougher, longer time. A few, I've heard, will need ongoing treatment for years.

I am hopeful. It was exciting to me to think that all these symptoms I had might actually go away. :-)

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 1/27/2009 6:54 PM (GMT -7)   
Northnode - Thanks so much for responding. It's great to hear that BC/BS reimburses for some of the expenses involved. I guess I shouldn't jump to the conclusion that I will need IV antibiotics but I've been so sick for so long that I'm assuming he will want to treat as aggressively as possible. I've been on Flagyl/Doxy for about three weeks and actually feel more fatigued and cognitive issues have gotten even worse. It's great that you are are getting better and the meds you are taking are affordable. Hope you continue to feel better.

northnode
New Member


Date Joined Jan 2009
Total Posts : 7
   Posted 1/27/2009 10:11 PM (GMT -7)   
I did get worse when I started on antibiotics -- thought I was 100 years old. dizziness, word blocking, and achy joints. But that's part of the herx reaction so I'm told. I usually make a list of things I want to ask my doctor and I go through it with her. Otherwise I'm just blank. Good luck with your appointment.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 1/27/2009 11:22 PM (GMT -7)   
Thanks. I'm sure I'll be back with lots of questions after I see the doctor next week. Until then I'm going to learn as much as I can. Just one week ago I never would have guessed that lyme could cause so many symptoms and so much suffering, not to mention how shocked I am at the controversy surrounding chronic lyme.

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 1/28/2009 12:25 AM (GMT -7)   
You're not alone.  My situation is similar - I've gotten worse over several years.  Fatigue, exercise intolerance, cognitive stuff.  It's overwhelming if I try to figure out where I'll be a year from now - and how I'll get there..
 
Insurance plans are all so different.  My llmd is not covered by my insurance, and neither was the IgeneX testing.  Maybe the best money I've ever spent tho.  The way things were going - well, I couldn't afford not to pursue this.  Everything thing else in the way of tests and meds has been covered.  What my llmd told me is that usually there's not a problem with insurance covering oral abx.  The question will probably be how long they will cover IV abx if they're needed. 
 
I actually thought I had CFS that would never be diagnosed.  At least we finally figured it out and can do some things to treat it.  As long as I've probably had Lyme, I'll be happy if we can keep it from getting worse and maybe make some improvements. 
 
When the abx kill the Lyme there are toxins released.  These aggravate my worst symptoms for a while.  I'm beginning to realize that this will be a marathon - not a few months sprint.  But really, what are the choices?  I worked and kept going as long as I could - and then crashed.  It does help to know there's a cause behind all of this.
 
Hope all goes well with your visit.  My llmd explains everything so well and is so supportive. 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 1/28/2009 9:03 AM (GMT -7)   
Thanks Rich. I hope all goes well with your treatment also.

Looking back I believe I might have been bitten in 2002 or 2003 because I spent a weekend in CT in 2003 and a few weekends upstate in 2003. In August 2003, I came down with a flu-like illness and was on short-term disability for 4+ months and diagnosed at that time by several doctors with CFIDS. I did have a history of frequently getting sick but always seemed to fully recover. This time I didn't. I went back to work in January 2004 but every day until I went out on LTD in 2005 was a struggle, both physically and cognitively. Since 2005, I've continued to get progressively worse and am literally bedbound most of the time. Usually, when I stand up for more than a few minutes I become very lightheaded, dizzy and even more fatigued and confused.

I cannot even begin to explain the emotional ramifications but I know unfortunately many of you can relate all too well.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/28/2009 11:27 AM (GMT -7)   
hey girl,
Don't worry about the port. Most Dr.s do not use them. My clinic does. And your insurance will cover it.
The problem that you will hit...that I did. Is with the LLMD's which is not even really a notable profession from say....Harvard.
But they themselfves do not take insurance. So watch out. You will have to sign a bunch of stuff. That will protect them, and only them, from you being able to sue them if you get really ill. And plus they will want your credit card # for other charges.
My first LLMD charged my 6,000 for my first day of so called test. Then she turned around and triple billed my insurance for the same test.
Then she told me it was a good thing that I had money. And that my abx treatment was going to cost me 3-5,000 a week for a year and a half.
I could not afford that. No way. And I have two sick kids as well. How could I???
Dr, P from FLL. Was reffered to me by the ILADS. Was very suprised to see her office. Is was filthy and her staff had tatoes and were just gross, and rude.
It was like a night mare. I ran....to Munich. lol
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 1/28/2009 11:57 AM (GMT -7)   
I'm sorry to hear about your horrible experience but am very glad that you are finally getting better.

I've read many good reviews about the doctor I have an appointment with next week and wish I could post his name. lol Am I allowed to say Dr. R in Manhattan? I hope so and would appreciate any feedback from anyone who has seen him.

I also spoke to a rep from Envita and am waiting for more information from them. At least I'm finally on the right track and hopefully will figure out the right plan of action within the next week or so. Unfortunately, my health coverage may very well dictate what plan of action that will be. I still cannot believe that even after the SPECT scan stating Lyme, Lyme was not seriously considered. Oh well!

Thank goodness for this forum and all the people who are willing to share their experiences, knowledge, advice and opinions. I'm really thankful for that and hope one day I'll be in a position to help others navigate through all of this b.s.
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