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Post by diamondgirl on Jan 3, 2016 2:57:21 GMT
I'm sorry I don't get here much. My computer is messed up, and I really can't see the writing on my phone, so I have just sort of given up spending to much time on line.
Can anyone give me any information on Lyme Disease.
I live in tick central. During the spring it's common for me to pull off several ticks if I have spent any time outside. I do use Deep Woods Off, but it isn't 100% effective. I do remember finding one tick on the back of my head that was full of blood. At the time I thought that is probably not a good thing. It might have been there for a few days. I know, gross!!!!!
This summer wasn't a good one. I felt sick off and on, and so tired, and depressed. Anyway, the day after Christmas I was awakened by sudden severe arthritis, in my wrists, shoulders, elbows, knees and ankles. By Monday, I could barely get out of bed. I did manage to get myself to the Dr. but I went in sweats, and no bra, because I couldn't manage the clasps.
He said it could be a virus, RA, or Lyme Disease. He put me on Doxycycline, and Prednisone. My insurance didn't start until Jan 1 so I asked to put off blood work until after that date. It might as well go towards my deductable. Which is almost $7000.00 so it may not even be applicapable anyway.
Now I have little painful blisters like spots on my fingers, and left hand, and purple non painful spots on my ears, and another less mentional area. The prednisone, and lots of Ibuprofen has really helped with the arthritis, but I still get a sudden severe headache, that is there, and gone in about 10 minutes. I'm not dizzy, but I am just off balance. It's like I am always walking on a slope. Oh and I have a sort of buzzing in my neck, but if I try to scratch it I can't feel it. I know I'm touching my neck but I can't feel that I am scraching. That has bee going on for several months. I thought I had a pinched nerve. Still, might be, a pinched nerve.
I did run some blood work at work. My white count was elevated, (bacterial infection) and my Sed Rate (an Inflamation indicator) was really high.
My self diagnosisis is either late stage, or Chronic Lyme. Does anyone have any knowledge or experience with this?
Another symptom listed on line, is short memory loss. I don't think I have that, but I don't know if I would remember if I had the symptoms or not. I'm scared. What if I've lost my mind, but I don't know it.
Sorry to be such a Debbie Downer. I'm just scared.
I miss you guys. I want to be here more, but I just can't seem to be.
Glenda
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Post by horselover4life on Jan 3, 2016 12:28:39 GMT
I'm not a doctor and a doctor is where you need to get your answers and test results from the tests they ordered...
It is the new year... GO, get those tests done.
{If you use a quest or labcorp location you can online schedule a app't and not have to sit and wait sometimes for an hour or more}
I do though have some knowledge of Lymes because I grew up in a area where it was a huge issue for human and animals alike...I also did some digging for you for factual information shared below.
So,....breathe.
What I did just read and what you described match as untreated Lymes symptoms....
Doxycycline is one of the drugs used to treat Lymes.
Whether you have anything else making a compounded issue is a total unknown till you get the rest of those tests.
A course of antibiotics lasting anywhere from 10 - 21 days is the norm, lasting side effects to irritate you happens to some for a while.
If you have more severe or other complications IV antibiotics are often prescribed, these also have side effects but are much stronger drugs to fight a infection much harder to get under control and gone.
What I did read and this is so important...
DO NOT ALLOW THE USE OF BISMACINE IN INJECTIBLE FORM...
The Food and Drug Administration warns against the use of bismacine, an injectable compound prescribed by some alternative medicine practitioners to treat Lyme disease. Bismacine, also known as chromacine, contains high levels of the metal bismuth. Although bismuth is safely used in some oral medications for stomach ulcers, it's not approved for use in injectable form or as a treatment for Lyme disease. Bismacine can cause bismuth poisoning, which may lead to heart and kidney failure.
My information came from...
www.mayoclinic.org/diseases-conditions/lyme-disease/basics/treatment/con-20019701
So...
My brother-in-law also suffers from Lymes...
What your doctor is doing is exactly what his did.
His though was caught very quickly and he saw the "bulls-eye" trademark and found the little tick so was off and running pretty quick for help.
I know he has had at times a re-occurrence of symptoms and needed further antibiotics.
I don't know though if that was because he was again bit by a tick that triggered the reaction...
Do feel better and we miss you here.
Do try to come more often, please!!
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Post by horselady on Jan 3, 2016 12:33:08 GMT
I would suggest you get a good diagnosis and get the antibiotic in you asap. and find better insurance that does not have a 7 grand deductible. yikes..
yes all those are symptoms of lyme and if you are breaking out in spots after taking doxy and predisone. perhaps you are allergic to one of them.
hope you feel better soon. they doxy should zap it. but at this stage you might need hospital or iv as for the white blood cells. yes infection perhaps but please get tested for liver and for spleen also. hate to scare you but undetected lymne is nasty and we and our horses and dogs should be tested yearly.
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Valhallanite
Junior Member
Dutchess County, New York
Posts: 826 
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Post by Valhallanite on Jan 3, 2016 16:22:17 GMT
I have had Lyme, however not late stage, or chronic. And in my case, I never even saw the tick, but did have the rash. I am very aware of ticks and pulled probably about 60 off off my kids over the years. Generally when they are blood filled they have been on too long (over 24-36 hours). Drs. here would have absolutely prescribed antibiotics as a preventative measure.
It sounds as if you have had it untreated for a long time. But it also sounds like you have more going on, maybe an allergy to the antibiotic or the prednisone. You seriously need to see your Dr. again, a medication allergy can be life threatening. When you call for the appointment tell them what is happening, sometimes they will just change the meds, but you do need tell them these new symptoms.
I certainly am no Doctor, so my comments are simply opinion, but I DO KNOW when a Doctor's help is needed. And sweetie, get your butt back to the Doctor.
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Post by diamondgirl on Jan 3, 2016 16:50:43 GMT
I am afraid my insurance is the best I can afford. I don't understand why Obama care seems to be affordable in other states, but here in Kansas it's still quite expensive. I took out the BC/BS bronze plan. The deductible is 6800.00 so basically 7000.00.
I'll get the blood testing sometime next week. I have a follow up appointment, with my Dr.
I think my biggest problem is that I looked online for answers, but all I got was way to much information. I know I should realize they don't report the simple stories, where someone gets bitten by a tick, gets Lyme, then gets better and goes on with their life. Most of the stories are about the more complicated outcomes. And that is why I came here. I wanted good, honest information, and not some Dr. wanting to sell me some sort of herbal supplement, that swears it is the only cure.
I think the sore little blister like things on my fingers, might be neuropathy. They feel like when your fingers have gotten so cold, from being outside to long, then they stert to thaw out, and sting like crazy for awhile. My fingertips are so sore, but if this only lasts for awhile, then I will overcome.
I think the onset was this spring. I was probably coming down with the symptoms, when I got strep throat. Then I got pneumonia. Once the Dr. found the strep, he didn't look any further. I just figured my slow recovery was due to my age.
I didn't know horses and dogs could get lyme disease too. I have never found a live tick on any of them. The dogs have front line, and the horses have sort of the same thing I get from my vet that I squirt in their manes and behind their knees. When I have found ticks on them, they have always been dead. I sure wish they had frontline for humans.
Buster will be going to the vet tomorrow. He had a seizure about two weeks ago. I took him to the vet right away. She said he was the right age to have a seizure disorder develope, and he also had an ear infection, that could have caused it. His ears are fine now, but I will ask her about Lyme testing. All I know is I don't ever want a repeat of that. It scared the daylights out of both of us.
Thank you so much for the information. I just want to have hope, for a light at the end of the tunnel. I guess it makes a New Years resolution pretty easy. I resolve to not give in to this. I will overcome.
It's just the little purple spots on my ears that are new, and I read somewhere that that is a symptom of Lyme. I also had an all over rash, that I told him about, and it seems to have gotten a little better. I am taking the Doxycycline. He prescribed it for 10 days, but I'll ask him if I need to stay on it longer. I think I would ratherr be safe than sorry.
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Terry
Junior Member
Central Illinois, USA
Posts: 1,466
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Post by Terry on Jan 3, 2016 17:37:31 GMT
DiamondGirl, I'm so sorry to hear that you have been having such a rough time. I do hope the doctor can get you fixed up soon. I don't have any personal knowledge or experience with Lyme Disease, but it sure is a scary thing! Take care of yourself and please let us know how you are doing.
I feel your pain on the whole insurance deductible thing. Ever since Obama Care went into effect, our insurance rates skyrocketed, and our deductible is so ridiculously high now that it makes me want to puke just thinking about it.
Feel better soon.
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Post by horselover4life on Jan 3, 2016 19:14:08 GMT
Oh diamond....
I'm so sorry you waited this long...
I know you said internet has been difficult for you lately.
So...the nueropathy can be part of Lymes when it is bad...
I know of many who had ignored symptoms and had more intense cases and once treated they did get better and side effects ceased.
As for dogs and horses getting it....yes. HL has had cases of horses and I actually lost a dog to it before it was known to be on LI and to look and treat for it...it is that serious!!
As for Obama Care...here in Florida it is the same way. 
People that had insurance in place before OC came into being said it was affordable and good coverage for a fraction of the cost.
Today, policies are privately held for most and then being a "single" and not a group buying it costs so much more.
I know my husband had a $9000.00, yes.. NINE THOUSAND deductible for major illness and "0" coverage for any doctors that cost us $787.97 a month!!
Seriously!! 
It was cheaper for us to self-pay like we had been doing, taking care of our medical needs and paying our bills off if they were beyond reasonable in cost...
The financial penalty now though would of been ridiculous so we had coverage for him and not for me...but I went to the doctors anyway and did self-pay to stay healthy.
I know so many that truly can't afford hundreds every single month for health care but are forced into having a policy...If you can afford it you would sure have it as we all know how expensive being sick can get and is!!
I just took antibiotics for a respiratory infection....$143.99 for 10 pills cash price and $4.00 with my insurance... 
Something is wrong with that to me!!
Why is the price such a mark-up for cash? Because they {pharmaceutical companies} can and do do it and we can do nothing about it!!
If that is the medication you need you will pay the price or be sick!! 
Oh...about the doxycycline...
My son used to take it for facial acne.
It killed the bacteria that caused bad zits...
So, a great complexion if you have any issues.
I also think it is one of those meds you may want to discuss, um... the after effects of antibiotics on a women BEFORE you totally finish that medicine so you are prepared and know if/when to start treatment...
I would try hard to get those blood tests done at least a few days before your return app't.
Takes time to run the test and send the results back to the doctor....
You want them to have those results in hand so if more medication, or a change in medication is needed it is done using the right combination of drugs to fight off which bacteria are nagging your body.
I also agree sounds as if you may be having a reaction to one of the drugs.
A phone call today to the doctors office should get you a return call by someone who can calm fears or make a possibly needed change.
Even your pharmacist could help you if you go see them and show them what has/is happening...they are incredibly educated and know so much.
Let us know how you are doing...we all do truly care!!
 ...
Cripe....back to writing books!!
Sorry guys!
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Post by diamondgirl on Jan 3, 2016 19:42:51 GMT
Oh my HL4L $787.97 per month and $9000.00 deductible.  I am going to shut my mouth and be thankful for what I have. The whole insurance, and high cost of medical care really makes me mad, but that's another story.
I was just so scared when this whole thing started. Honey has truly allowed himself to become a victim to his arthritis pain. He has sat in a chair and felt sorry for himself for so long, he can barely stand and walk anymore. It makes me so mad. It's like, he wants to be a victim. He wants to be a baby. He wants someone to take care of his every need. WEL I DONT WANT THAT FOR MYSELF. No way!!! Never!!!!!
When the pain first started I could barely dress myself. The prednisone and Ibuprofen have taken away most of the joint pain, and I can deal with my fingers. I'm just nervous about what if they return. I have to be able to take care of myself. I will never become like him. |
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Post by horselover4life on Jan 3, 2016 20:17:51 GMT
I have to wonder if some of that ridiculous cost is because of the higher in age population of retired or near retired in this state.
And the lower cost of salaries many qualify for help to offset the cost...
Because we work and hubby earned a good salary we qualified for nothing and had to pay a share of the costs for those that could/would not.
Because of those same issues we also would of been severely fined when filing taxes and not having coverage...
I'm glad you are a fighter for staying independent and healthy.... 
Attitude means so much.
As for Honey...
Has he ever or has it ever been looked into him taking Meloxican? {not sure that is correct spelling}
It is a arthritis drug that my hubby now takes and made such a difference.
My hubby was so sore he could barely walk, get up or down from sitting at the table forget his recliner...
He had no energy, slept near all the time and bitched... A LOT!!!
He was in a lousy mood, and cross with everyone....
Doctor did some tests, then put him on special steroids for 5 days to knock down the inflammation along with this medication.
Now he takes 1 small pill a day and is like a new person.
Currently out in the garage working on his project car restoration he could/would not do for the past 6 months of no interest.
He hurt, now it is controlled and he is so much better and NICER to be around...
Maybe something like that could be done for Honey if his health allows...
There are side effects to watch for and take precautions with certain interaction drugs, but it gave him back his life he loved...and me my husband who went missing!! 
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Post by diamondgirl on Jan 3, 2016 22:10:37 GMT
Honey has the VA for his medication, and they won't spring for anything costly.
When we got married, he was recovering from an accident. I felt sorry for him. He kept telling me he wanted to get better, and I believed him. It was all a lie. His pain was his excuse to not be able to hold a job. It was the reason for his alcohol and drug abuse. It was the reason he couldn't attend our kids school programs, but it didn't seem to hold him back from playing golf, or leaving me with the kids and going to the lake for a big drinking binge.
While I know he isn't happy about what his life has become, he is responsible for much of the outcome. Please don't think I'm being hard hearted toward him. I just don't believe him anymore. I love him, and I take care of him, but I can't afford Meloxicam.
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Post by horselover4life on Jan 4, 2016 1:33:57 GMT
OK....drugs not for Honey issues.... he has enough of his own it seems.
Keep it in mind though for you while you get better from Lymes or what ails you.
,,,
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Post by horselady on Jan 4, 2016 2:36:41 GMT
if honey is VA he needs to just be more assertive with his dr.s// and if they do not help than he can call the administrator of the hospital.. they do not want anyone saying the veterans are not being taken care of. my hubby get on the phone and talks to them and he knows the admin on a first name basis, not a trouble maker but i push him to make the calls to get the help he needs.
now for you and your tingly fingars. yes that is probably from diabetes. BUT it is also a symptom of lyme. and 10 days is not enough. you need it at least for 30,, and stay out of the sun,, yes even at this time of year. the sun does not interact well with doxy, and watch your dairy. little to none.
the seizures on buster could also be lyme. so have him tested also. and the vet might say it is false positive. ask and demand the dozycyclyne ,, the pills are the same as for humans ,, i give my dogs one a day for 30 days every year .. oh and cats do not get it. i find that amazing.
do not feel guilty for taking care of yourself. and if after all this time you are hardened to your honey's life... well that is ok too.
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Valhallanite
Junior Member
Dutchess County, New York
Posts: 826
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Post by Valhallanite on Jan 4, 2016 3:28:25 GMT
I know the cost of the doxycycline isn't that high, but when my son had Lyme a few years ago, Stop and Shop supermarket was dispensing it at a really reduced price, I forget how much, maybe $5. (of course with a prescription). I think Walmart was doing the same. I don't know if they still do it. It's worth a phone call. It sounds like you have your meds already though.
Feel Better
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Post by diamondgirl on Jan 4, 2016 4:27:50 GMT
With my co-pay the Doxy should only cost me $15.00. I feel like that is a small price to pay for my health. As for Buster.... I don't even now if my vet will test him. I immagine she will probably just pop the pills in a bottle, and give me the instructions. The best thing about having a vet you trust, is having a vet that trusts you too. I know my animals, at least the best I can. When I say something is wrong, then I am basing on their behavior now, not their behavior as compared to others of their kind. My vet and I usually get along. Buster has had off, and on stiffness in his joints, especally now that the weather has gotten colder. He has very poor confirmation, and I was attributing it to that. Now I wonder. Then when you add in the seizure, it all points to possible Lyme. All I can do is the best I can for him.
I will keep in mind the 30 days of Doxy. So far I only have 10 days. I will be done with that on Friday. I think I will have a new prescription before that, or I will have a new Dr. whether I have my test results back or not. I won't have long lasting problems from this. It sounds like it is better to just get this done and over with. That is all I want. For both me and Buster. |
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Post by horselover4life on Jan 4, 2016 12:32:13 GMT
With your insurance plan that medication should be way less!!
Most stores {Walmart, Kmart, Stop&Shop, etc..}have "their" drugs on a discounted cost program...
Doxy is already a generic with that name so bottom tier in cost and then reduction from your insurance.
You are worth every penny and then thousands more in costs to keep your health....
Don't let Honey's attitude bring you down...
Fight for what is right for you..
IF you don't fight and demand the best for you no one else will...
I just looked at Stop & Shop list of generic drugs in their program...
Doxycycline for 180 - 270 tablets is $9.99!!!
So not expensive for you to get well...
Other pharmacies price match too... don't ever be afraid to shop around for best price and ask if they will match it. If they refuse, take the prescription to where the drug is cheapest.
Oh and if the vet says medication is needed for the dog...
There are very few medications prescribed that are not human consumed...
Get a script written and filled at the local pharmacy.
A LOT cheaper and pharmacies do it all the time, not a big deal!!
Our lab had seizures. We filled the script for 250 phenobarbital tablets at the local supermarket pharmacy for $4.00. At the vet it would of been $65.00++. {our lab took 8 pills a day}
I now fill all my maintenance drugs {heart-worm, flea} myself. The prices you pay a vet are prime/list and you can get them yourself for cost, near the vets cost for a BIG savings!
Look around and don't be afraid to tell the vet you want a script to fill at your local store...they may very well call it in for you too.
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Valhallanite
Junior Member
Dutchess County, New York
Posts: 826
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Post by Valhallanite on Jan 4, 2016 12:53:35 GMT
The Dr. only gave you 10 days of doxy? I suppose that is to get you started until the blood test results come in? I hope so, because everyone I know who had Lyme, had I think it was 21-30 days of it. I don't know if stopping and starting the antibiotic is the best thing. I'm surprised the Dr. didn't give you the full prescription. Mine did, right off the bat. And I have a friend who is a physician's assistant, she was going to give me a prescription right away if I didn't get one immediately at my Dr.
Just looking out for you, Lyme is mean. Wishing you the best.
smileys-home-474322
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Post by diamondgirl on Jan 4, 2016 13:40:47 GMT
Actually the prescription is Honeys. He had a lung infection last June, and his APRN had it filled, incase he got sick again. She wanted me to have it on hand, so I could start it right away if he started to cough again. He never used it.
My insurance didn't start until Jan 1st. I told my Dr. I had the medication at home, and he said to start it, and follow up this week. He will write a replacement prescription so I can replace Honeys Doxy, and it will even be fresher, and so will be good even longer.
Please don't think I would ever mess around with Honeys medications. He is on some very powerful narcotics, and I am very careful with all his pills. I also enjoy the trust I have with his VA doc, in allowing me to keep an antibiotic on hand, in case he suddenly needs one. BUT I would never give it to him without a Dr. telling me to do so. The Doxy was just here, so we wouldn't have to wait for a mail out Rx.
My Dr. saw no problem with me taking the on hand Doxy then replacing it with my own prescription, so it could be purchased on my prescription plan. He will probably write it for longer once I see him this week.
I don't understand though. He told me that Doxy, even though it's generic, was pretty expensive. That's why I decided to complicate matters by taking what I had on hand instead of just getting my own. I would hate to think I have gone through all the extra worry this has caused over a matter of a few dollars. Even though it will work out better in the long run, and I wont have to toss out his Doxy in June, if he doesnt have a need for it, I will probably worry about this until it is all over with, said and done. |
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Post by diamondgirl on Jan 5, 2016 1:13:22 GMT
Talked to my Dr. today. He is concerned that my test might show a false negative, after being on an antibiotic for a week. He weighed in all my symptoms to which I have now added blurry vision. It's like there is a film over my eyes. I thought it was just winter dry eyes. It's been going on for awhile, but I thought it was just a symptom of the dry air, and so I ignored it. He seems to think it's another symptom.
I also talked to my vet. She didn't want to test Buster either. So now I have Busters 30 days of Doxy, and my daughter will be bringing by my 30 days of Doxy in a little bit, and we will both get over our ailments. It's lucky to have a daughter who is a pharmacy tech at Walgreens.
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Post by horselady on Jan 5, 2016 12:30:19 GMT
I do the same with my hubbys pills from the va. and i am thankful the pills are here. why is it that dr.s do not want to test for lyme. it is a simple blood test for crying out loud. . perhaps you will need more than one a day. i would take two as it depends on severity and weight. and human doxy is not expensive . it is the animal one that is 50 pills for 85.00 where as the human druggist charge 8.00 so like hl4l says get a script and get it filled in the drugstore and say it is for your dog.
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Post by diamondgirl on Jan 6, 2016 1:44:27 GMT
Buster gets two pills a day, and so do I. I think it's funny that we are on the same dose, and Honeys dosage is the same that the Dr. prescribed for me. I weigh twice what Buster weighs, and Honey weighs twice what I do, and yet it is still all the same dosage. I guess Honey was prescribed Doxy for a different reason, but it is still odd. Buster and I take out pills for 30 days, and we are both to follow up with our Drs. next week.
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...
I am going to shut my mouth and be thankful for what I have. The whole insurance, and high cost of medical care really makes me mad, but that's another story.
