Should I do another Western Blot test?

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nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 6/26/2010 2:01 PM (GMT -6)   
I've now been denied TWICE by Blue Cross. They refuse to cover the expense of my IV Rocephin. I'm so ANGRY and INSULTED!!! Here is what they said in their most recent denial letter (received yesterday):

Based on current criteria you do not meet the definition of Lyme disease and do not warrant therapy at this time. Your Lyme serology testing does not meet Centers for Disease Control and Prevention criteria and the few bands you have are likely a false positive from your multitude of rheumatologic diseases and are difficult to interpret knowing that you have systemic lupus erythematosus (SLE), rheumatoid arthritis, and multiple other diseases which have a multitude of antibody responses. With a normal cerebrospinal fluid (CSF), it is very unlikely that you have Lyme disease involving your central nervous system. Lyme disease should not be a diagnosis of exclusion to explain puzzling complaints, particularly when they are not accompanied by objective markers of organ damage and or inflammation.......We recommend that you discuss alternative options with your physician. We are upholding the original denial as investigational and therefore not a covered benefit.

My first Western Blot was IGeneX positive but not CDC positive. If I do another WB now, will I get a better result since I've been on abx??

I'm really afraid that they might stop paying for ALL of my abx and visits to my Lyme doc etc, since they are now saying that I don't have Lyme! I think their arguments are BS, because it's totally obvious I was bitten by a tick: I tested *very* positive for HME (Human Monocytic Ehrlichiosis - Ehrlichia chaffeensis). You can only get HME from a tick!! This makes it MUCH more likely that my "few bands" are from actual Lyme disease than just my malfunctioning immune system generating random antibodies!

Of course, they are conveniently ignoring all of that..... mad
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 6/26/2010 6:56 PM (GMT -6)   
Hi Patti,

I'm so sorry you've had to stop seeing a doctor and taking meds.

Did you do more than one Western Blot test? Did you get better results after taking antibiotics?

I totally agree that they are just using the IDSA guidelines as an excuse to refuse payment. I plan to ask the state to do an Independent Medical Review. I will also call my Congress woman and Senator. I'm really MAD!

JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 6/26/2010 9:22 PM (GMT -6)   
Thanks Don. I will probably do one more Western Blot....and I will pay for it myself.

As a scientist the antibiotic route makes the most sense to me, although I've been very interested in everyone's experiences at the Hansa center. I'm giving the IV Rocephin a try, but I don't know how long I will be able to afford it.
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 6/26/2010 10:36 PM (GMT -6)   
Nasalady, Patti, and others:
 
This is all wrong.
 
First of all, when you have those positive reactions on species specific bands, that is significant evidence of Lyme disease.
 
2nd: Almost ALL of the literature out there states that Lyme is a 'CLINICAL DIAGNOSIS'.  Meaning, regardless of the test result, your Dr can diagnose lyme based on clinical examination, presentation, and symptoms.
 
I do not understand how an insurance company can deny treatment for a person who has been properly diagnosed by an MD, regardless of what the lab tests show.  That is too much like denying treatment for a person w/ MS, ALS, Parkinson's, CFS, Fibromyalgia, etc etc etc, for whom the diagnosis was made clinically.
 
Don't worry: IF the specialist I'm seeing this coming Tues diagnoses lyme, then any denials by my insurance company will be fought tooth and nail.
 
Nasalady, you should not even have to take (and pay for) another blood test!
 


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 6/27/2010 12:17 AM (GMT -6)   
Dear +Lyme,

Yes, of course you're right. And all of those things you've said were in my letters to Blue Cross. And I plan to request an Independent Medical Review by the State of California. I have not given up the fight....I don't give up easily.
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 6/27/2010 10:56 AM (GMT -6)   
Patti, your post just breaks my heart. You've obviously been on this journey for a lot longer than I have....I'm new to Lyme, just dx in January, although I was probably bitten 6 or 7 years ago. I can understand that after a while, you just don't have the energy to fight anymore.

Patti, you're too young to just "move on". But I relate to you better than you can imagine. My husband is 60 and unemployed; he takes care of our two adopted little ones (my biological grandkids - both 4 years old at the moment) because I can't. I am 54 and still employed (barely).

I am not bedridden all the time, just sometimes, but am definitely not able to go into the office at all so my employers allow me to work from home (over the Internet) 24 hours a week. I'm on partial disability too. We are no longer able to pay our mortgage so we are letting our house go. It's horrible. I used to work two jobs to keep up with the bills after my husband stopped working....my regular day job plus teaching a math class every semester at a local college. But I can't teach anymore....the brain fog, scrambled speech, sensitivity to sunlight and fluorescent lights. Just can't do it.

Patti, isn't there some way you can get on disability? You definitely sound like you qualify for it!
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/27/2010 11:27 AM (GMT -6)   
Patti, God bless you,
 
I am so deeply sorry for your entire situation.  ALL of this is so unfair. 
 
YOu know, I am so angry about the 'bailouts' because they were so unfair --- thousands of us have lost money and ruined lives, yet where is OUR bailout?  I was a lowly mortgage processor, but I was going to do that until retirement. Then we all got wiped out. Where was OUR bailout?
 
I wish I knew of something I could do or say that would help. Please don't say that you are supposed to 'move on'. I am nowhere NEAR as sick as you are, but I am familiar with that feeling. It is the disease talking. I am convinced that is part of the course of this disease in humans.
 
Maybe this is more than you can handle right now, but I am wondering if there might be a medical malpractice attorney out there who could help you. I realize you don't have the money for it, but there are atty's who will give a free consultation, proceed, and then charge you only if you win. (an arm and a leg, I'm sure, but maybe you could get enough for proper treatment)
 
I am a municipal court clerk and one of our Judges specializes in medical and product liability suits in his private practice. I do not see him often, but I am going to ask him about this kind of situation. Because it's possible I could find myself in that spot, as well.
 
You have a professional diagnosis. (SAme for Nasalady. Why should you have to take another WB??) 
 
Some of the possible treatments may not even be that expensive. I don't know about your co-infections, but some Drs treat Lyme with weekly shots of penicillin and that is CHEAP. Way too cheap to deny someone!
 
I don't know what else to do besides pray. Maybe you can't keep fighting, but please don't stop praying for a miracle.  And while you are praying, pray for your entire immune system as well. Try to visualize the healing hand bringing your immune system to a new life.
 
I am also wondering about all the LLMDs who are forced to close their practices. I have learned that the LLMD that I saw last summer no longer treats lyme because of the threat.  I don't believe we know the truth and the scope of all this.  I would think that these Drs would try to come together and get legal council themselves, wouldn't you?
 
Do you know the specific reason(s) your Dr was forced to close shop?
 
AS I've been saying, I will be seeing an infectious disease Dr on Tuesday. I have no idea yet if and how he treats Lyme, but he is referred to as an LLMD.  Specializes in AIDS, chronic fatigue, MS, and Lyme. I will have many questions for him about all this. 
 
Patti, I will certaily pray for some relief for you -- relief and new found hope.  And I hope that ALL of us here will pray for your whole family.
 
I don't usually say all this to everyone here who is suffering, but I want for all of you to know that I feel the same for everyone here. I pray for mercy for everyone
 
For some of us, prayers are all we have left. Miracles do happen, tho.
 
And I firmly believe that Lyme infection CAN be cured -- it's a freaking spirochete, even if a crafty one. Everyone's body and immune system is different, so different people are helped by different things. Still, this is an infection and it CAN be cured! It HAS to be! We MUST be assured that there are Drs working on this problem! Let us hope and pray that their research is not cut short by the government!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 6/27/2010 11:39 AM (GMT -6)   
Yes, I agree, miracles DO happen! Even if prayer is all you have left, prayer is powerful. I am praying for all of us, praying for PattiB and her husband and daughter.

And depression is part of Lyme disease....please don't give in to the "I should move on" ideas that come into your mind!! Does your church provide free counseling? Please talk to someone about these feelings, Patti.

+Lyme, yes, I have a diagnosis from a doctor who is a specialist in Lyme disease, why should I have to prove anything to anyone? This is one of the major points I will make in my letters/phone conversations with the various lawmakers I plan to contact regarding Blue Cross.

(((((((((hugs))))))))))) to you all!
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 6/27/2010 3:30 PM (GMT -6)   
So much suffering....
Like +Lyme, I pray for everyone that has to get 'introduced' to Lyme & co-infections.

I am about to start seeing an acupuncture therapist who is also a Master herboligist. I had really good results from this type of treatment before I realized I was dealing with tick-born illnesses.

Before anyone gives up on getting treatment, it might be worth the time & money (they are usually less expensive than a regular doc) to give it a try.

Just a thought...
-Live simply- Love generously- Care deeply- Speak kindly. May we all find peace along the journey to find healing.
Trav

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