Insurance company trying to f**k me
Well nothing like trying to be killed by an insurance company. I was told that I am approved for my meds till April 30th and then they would review how much long if I could be on the meds. Was told this by multiple pharmacy and insurance people.
Got a letter today saying they are now not approving my drugs as it is not a proven therapy. Now the battle begins.
At least we found a place that we can kinda afford the meds per week.
The fight begins.
F*ck
Also carried by the Lone Star tick. My LLD has had dog ticks and Lone Star ticks tested by IGeneX and they were positive for Lyme and other tick borne illnesses.
Folks,
I’m sure some of you follow doctor reccs by the letter. And many of you search for other resources and self educate from wherever you can. I’m not a human doc, I’m an alternative med.veterinarian who has treated many dogs (and horses) for lyme ds.
Here is a perspective from the animal world, not to be taken as therapeutic directives:
Many of the animals are on doxy already. Diflucan (fluconazole) is for fungus/yeast, and has recently become part of human tx. One of the reasons for use is that the mechanism of action is to inhibit the growth of the early form of the lyme organism itself through the mitochondria. There is some consideration that without it, the antibiotics force the organism into quiescence in cells (go into hiding to recurr much later).
Advice to animal owners:
Alternative support starts with nutrition, as previously mentioned. Eat healthy folks!! Fresh food, lightly cooked, seasonally available foods, with a lot of variety. And it’s not just what you eat, it’s what you remove from the diet. Processed foods, canned foods (BHT etc from can liners), wash your vegetables.
Omega 3 fatty acids: from the best sources - norwegian fish oil, krill oil. This helps diminish inflammation of joints, heart, and tissue without causing stomach upset or erosion or kidney issues. Also aids regulation of the immune system.
Antioxidants - aid repair of diseased tissue. Examples are vit C and E, and many of the dark blue or red berries that are the hype now.
Digestive enzymes - certain kinds can be taken in between meals and are thought to be absorbed as larger molecules and have an anti-inflammatory action especially noted on arthritic or immune-mediated joint disease.
Unodegato or cat’s claw - produced in a specific way - purported to have effectiveness against lyme ds.
These are approaches beyond conventional medicine (ie: in addition to), for animals. They might give you some ideas for investigation for yourselves. There are some docs (human) that will counsel beyond antibiotics and anti-inflammatories, and many naturopaths, esp on the east coast will have quite a familiarity with supportive measures that may help with nonresponsive ds. There are also lyme disease list-serves - tho take everything you hear on the net with a grain of salt.
I know chronic ds can be very debilitating. I hope this info can help some people.
MW
For those of you with joint pain, I found shoes that work great. I was supprised that they relieved lots of my joint pain. I bought the Sketchers Shape Ups and they work really well. Relieve lots of my foot and joint pain.
Thought I would chime in as yet another longtime Lymie… I’ve had IV treatment twice - one via pickline, then via port - and must say that I definitely thought the port was more convenient and comfortable. I’ve also been on oral antibiotics for years - 4 different ones at the same time that then also changed every three months - and yes, it’s a little bit like chemotherapy, at least the way I imagine it. Additionally, I had my spleen removed as it was infested with whatever stage of the Lyme bug it was that kept me from getting better.
I think the most important part of this journey is trying to keep your spirits up. I developed an attitude that said that I could do anything I wanted to, and by God, I did! I never quit taking care of my horses or anything else. Yes, some days were tougher than others, but then they are whether you’re sick or not. Don’t allow Lyme to define who you are and what life you can live.
A good life to all of you!
Siegi- I don’t want this to sound rude, but how did you get your insurance company to pay for the removal of your spleen? With how long I have been ill that is a question I will ask my doctor about. I mean mine United Health said I only get 30 days of IV Rocephin in my LIFE. And they seem to only like to have things looked at and treated for everything BUT lyme disease. They are more then happy to send me to any specialist to look into what it might be because of course everyone knows that lyme disease is treatable by just a few weeks of doxy and anything else is a different problem or you are nuts or it is just from aches and pains of daily living.:mad:
nurse weighs in - JMHO!!
Make sure you are consulting with an infectious disease specialist type of doctor for ongoing Lyme treatment & advice. Many regular docs are not up on the latest treatment recommendations. Make sure your “alternative” treatments don’t interfere with your regular treatment.
And whether you agree or not; once the infection is cured - you are likely dealing with the effects of the damage the bacteria did when it WAS present. And if it’d crossed the blood-brain barrier then the ONLY way to treat it is with IV. IV antibiotics can go places that orals can not to kill the bacteria. There is no “remission” with infections - you are either infected or you aren’t. You may have another infection from another bite or another kind of infection. But you get long term damage from many infections or it can spread to other organs and cause long term damage. EX: bacteria gets into joint space-inflames-does damage and that equals chronic severe arthritis (NOT chronic lyme disease or chronic infection). Or any infections (not just lyme) can go to your heart and cause scar tissue/valve damage with a resultant murmur.
It’s chronic damage you are most likely dealing with so a knowledgeable rheumatologist CAN likely treat effectively the effects of chronic arthritis, joint pains and such. If you are not currently infected then maybe steroids will work. Be careful what you read on the internet!!! Get and find a doc you trust and do what they say!
[QUOTE=wateryglen;4781087]
Make sure you are consulting with an infectious disease specialist type of doctor for ongoing Lyme treatment & advice. Many regular docs are not up on the latest treatment recommendations. Make sure your “alternative” treatments don’t interfere with your regular treatment.
And whether you agree or not; once the infection is cured - you are likely dealing with the effects of the damage the bacteria did when it WAS present. And if it’d crossed the blood-brain barrier then the ONLY way to treat it is with IV. IV antibiotics can go places that orals can not to kill the bacteria. There is no “remission” with infections - you are either infected or you aren’t. You may have another infection from another bite or another kind of infection. But you get long term damage from many infections or it can spread to other organs and cause long term damage. EX: bacteria gets into joint space-inflames-does damage and that equals chronic severe arthritis (NOT chronic lyme disease or chronic infection). Or any infections (not just lyme) can go to your heart and cause scar tissue/valve damage with a resultant murmur.
It’s chronic damage you are most likely dealing with so a knowledgeable rheumatologist CAN likely treat effectively the effects of chronic arthritis, joint pains and such. If you are not currently infected then maybe steroids will work. Be careful what you read on the internet!!! Get and find a doc you trust and do what they say![/QUOTE]
I am lucky to have one of the best LLD in the country only 1hr away. Yes, we are dealing with the infection still, which is why I am starting to feel better on the IV meds. Was almost cured last year, this is going to be my year. I know it. We will make this happen. Even my joints are getting better. I figure/ know there will be some damage that is now not fixable but my doctor thinks most of it will be if we do the right treatment. He has treated hundreds of people for advanced/chronic lym disease.
Trust me I don’t believe much that I read on the internet unless it comes from another lyme suffering person, like on here. They say lyme is not fatal, well I know 3 people that died of it.
They say that a few weeks of doxy and you are in the clear, well the thousands of us that are like this should be proof it isn’t true but until they change the guidelines our doctors are going to be fighting to get us healthy, keep their licenses, and try to get the insurance company to pay for some of it. :mad:
Make sure you are consulting with an infectious disease specialist type of doctor for ongoing Lyme treatment & advice. Many regular docs are not up on the latest treatment recommendations. Make sure your “alternative” treatments don’t interfere with your regular treatment.
Yep. :yes:
[QUOTE=wateryglen;4781087]
Make sure you are consulting with an infectious disease specialist type of doctor for ongoing Lyme treatment & advice. Many regular docs are not up on the latest treatment recommendations. Make sure your “alternative” treatments don’t interfere with your regular treatment. [/QUOTE]
Maybe. Depends on the doctor. Have you kept abreast of the fight against the IDSA and their restrictive guidelines?
And whether you agree or not; once the infection is cured - you are likely dealing with the effects of the damage the bacteria did when it WAS present. And if it’d crossed the blood-brain barrier then the ONLY way to treat it is with IV. IV antibiotics can go places that orals can not to kill the bacteria. There is no “remission” with infections - you are either infected or you aren’t. You may have another infection from another bite or another kind of infection. But you get long term damage from many infections or it can spread to other organs and cause long term damage. EX: bacteria gets into joint space-inflames-does damage and that equals chronic severe arthritis (NOT chronic lyme disease or chronic infection). Or any infections (not just lyme) can go to your heart and cause scar tissue/valve damage with a resultant murmur.
Yes, there is no remission, but the infection can be suppressed once it’s at a low enough level. Just takes a stressor that overwhelms the immune system for it to come roaring back. Check the studies by Cornell on dogs and horses.
It’s chronic damage you are most likely dealing with so a knowledgeable rheumatologist CAN likely treat effectively the effects of chronic arthritis, joint pains and such. If you are not currently infected then maybe steroids will work. Be careful what you read on the internet!!! Get and find a doc you trust and do what they say!
No, no, no. If you’ve had a long term infection, odds are that you have not completely cleared the infection. Steroids are probably the worst thing you can do. Find yourself a good lyme literate doctor. They are out there. Some are infectious disease specialists, most are not. Most follow the IDSA guidelines and believe that short term treatment will “cure” lyme. Any other symptoms are diagnosed as post lyme damage. Very few are looking for co-infections (Babesia, Bartonella, etc.) My daughter would still be in a wheelchair if we hadn’t found a competent Lyme specialist. She now able to play polo again, is starting and training horses and runs a farm. Six years ago she was unable to walk and couldn’t string five words together to make a sentence along with a whole host of other symptoms. And that was after 6 months on IV rocephin. It took other combinations of IV, IM and oral antibiotics to get the infection under control.
I agree with LauraKY and know that sometimes it takes a very long time to clear up Lyme in people. The problem is that some of the antibiotics used are prohibitively expensive (I’m talking several thousands of dollars a month!!), and that’s why the insurance companies don’t want to authorize anything in excess of minimum treatment.
There are several initiatives going on to change this and headway has been made in some states. It’s hard to argue with the fact that these expensive drugs help people that have been crippled by this disease, however the insurance companies don’t like to part with their money.
P. S.: For all of you who are suffering from stomach issues because of taking antibiotics, please take probiotics along with your course of pills.
LauraKY and siegi b are both right. You have to find a LLD, not just an infectious disease specialist. Most of those won’t treat the chronic patients with what they need.
Yes, the meds are expensive. But not as expensive as the insurance company and pharmacy wants you to believe. I just got my months worth of Rocephin IV shipment with all my heprin and saline flushes, and my needles and dressing kits and it was $1,300 for the month. Now I am not saying that is cheap. That is a lot of money to come up with every month. But at a certain point you have to go do I want to live or die slowly or just live wishing I as dead? By the way the pharmacy we got it from sells it for what the insurance pays them. So that tells you the mark up on most of the drugs.
Right now I am typing this while my meds are hooked up to my chest port, and just got done hearing my horse went clean XC at his first event.
Oh and I am on week 3 and improving, but we are doing AT LEAST 12 more weeks of this if not more, that includes as of next week oral rifampin.
LauraKY- Do you have a link to the study Cornell did on horses and dogs with lyme disease?
I do not have Lymes, but have a very dear friend who was diagnosed last summer with it. She has been told that she is suffering from “post lyme”, and is seeking out some answers because she is constantly tired, has the brain fog, etc.
I will be sending her this thread, for sure. Hopefully she will join and contact some of you about your experiences.
Here’s one link that showed beagles exposed to Lyme, without symptoms, but with a subclinical infection (horse owners out there, be wary) actually had evidence of the disease upon necropsy: http://www.ncbi.nlm.nih.gov/pubmed/15904927?dopt=Abstract
An article at Horse.com referencing the Cornell study: http://www.thehorse.com/ViewArticle.aspx?ID=11929
Another, again at Horse.com referencing another Cornell study with tetracylcline vs doxy (noting a better response from IV tetracycline).
http://www.thehorse.com/ViewArticle.aspx?ID=4973
And a presentation by Dr. Divers (Cornell) to the AAEP:
http://www.ivis.org/proceedings/aaep/2003/divers2/ivis.pdf
I can’t find the one I was really looking for, but will post when I do.
There is another forum: www.lymenet.org which is a support group type set-up with lots of good info. Like any forum, there are some “crazies”, but there actually (like COTH) is a lot of good, helpful info.
GaellentQuest, I would post there with info about your troubles with the insurance company. I’m pretty sure that some of the posters may be able to help direct you in the best way to appeal. Lots of expertise in that area!
[QUOTE=siegi b.;4783277]
I agree with LauraKY and know that sometimes it takes a very long time to clear up Lyme in people. The problem is that some of the antibiotics used are prohibitively expensive (I’m talking several thousands of dollars a month!!), and that’s why the insurance companies don’t want to authorize anything in excess of minimum treatment.
There are several initiatives going on to change this and headway has been made in some states. It’s hard to argue with the fact that these expensive drugs help people that have been crippled by this disease, however the insurance companies don’t like to part with their money.
P. S.: For all of you who are suffering from stomach issues because of taking antibiotics, please take probiotics along with your course of pills.[/QUOTE]
Second probiotics. Just don’t take them at the same time as antibiotics (at least 2 hours after). We do it for our horses, also.
What I don’t understand is that they, the insurance companies, seem to be perfectly willing to spend thousands ($300,000 in my daughter’s case and 43 doctors) on tests looking for anything but Lyme. They just love to diagnose MS (which happened to a good friend, turned out to be Lyme) which can be expensive to treat also.
Fortunately, the insurance company we had at the time approved long term IV therapy and then IM Bicillin therapy. There’s another study somewhere that said the IM Bicillin cleared the infection better in pediatric cases than any other treatment. I’ll look for the reference. But, boy, oh boy, it can be painful (very thick).
Just can’t figure out the logic…if there is any.
[QUOTE=LauraKY;4783553]
Second probiotics. Just don’t take them at the same time as antibiotics (at least 2 hours after). We do it for our horses, also.
What I don’t understand is that they, the insurance companies, seem to be perfectly willing to spend thousands ($300,000 in my daughter’s case and 43 doctors) on tests looking for anything but Lyme. They just love to diagnose MS (which happened to a good friend, turned out to be Lyme) which can be expensive to treat also.
Fortunately, the insurance company we had at the time approved long term IV therapy and then IM Bicillin therapy. There’s another study somewhere that said the IM Bicillin cleared the infection better in pediatric cases than any other treatment. I’ll look for the reference. But, boy, oh boy, it can be painful (very thick).
Just can’t figure out the logic…if there is any.[/QUOTE]
That’s what I don’t get. They are more then happy to treat me for anything else. Run TONS of expensvie tests, for them and me, come up with nothing, BECAUSE IT IS THE DARN LYME DISEASE, and then refuse to allow more then 30 days of IV rocephin in my lifetime.:no::mad:
On week 4 now of my IV rocephin. Doing a lot better. Though it is odd to have my eventer down being competed and trained by another rider. But anyways week 4 is down 8 more at least to go.
I second (or third or fourth or twentieth!) going to a specialist who knows his/her stuff. I was diagnosed with Lyme by my incredible family practitioner after almost a year of severe fatigue and joint pain. A week later I ended up in the ER, where I tested positive for mono. The ER doc looked at my Lyme titers, laughed, and told me to go home and go to bed (for the mono). I actually did have mono, but thank goodness my FP sent me to a specialist and rode me about getting the right treatment for the Lyme (which she thinks made me susceptible to the secondary mono infection). I did 6 months of doxy; the ONLY things that worked for me nausea-wise were eating about 1/2 hour to an hour BEFORE I took it (after didn’t help, up it all came) and being religious about the probiotics (I took the pill form and drank a glass of that Kefir yogurt/smoothie product when I got up in the AM and again before I went to bed). I also took N-aceytl-cysteine (recommended by my doc, bought OTC). I don’t know if the literature’s there to support this claim, but she had me take it to counter the effects of massive bacteria die-off (once the antibiotics did their job, the dead bacteria cell walls still in my system were making me feel just as sick and feverish as the live, whole bugs). I saw a difference on it, especially when I started a new drug or new dosage of the same drug. Concurrent with the doxy, I was also on a nitroimidazole drug for 4 months (believed to get the cyst form of the bacteria that will lay dormant and then, once you’ve finished treatment, flare up again). Adding to the fun, I also had a severely enlarged spleen (you could actually see it bulging under my ribcage, at its worst it was 350% it’s normal size- the ultrasound techs had a good laugh when I came in to get it checked- we called it my alien) that kept me from riding, running, and generally living life even after I started to feel better. I’ve been symptom-free for almost 10 months, and can only imagine what many of you are going through. My whole life was put on hold while I was sick; it is a terrible, debilitating disease that doesn’t get nearly the respect it deserves from the medical community.
My thoughts and prayers are with all of you, please don’t give up hope! I found my horses to be a great release when I was able to get out to see them. Even when I couldn’t ride, it was comforting to have that “normal” time, grooming them or just watching them graze. Good luck to all of you! I will be thinking of you and checking here for updates.
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