posted
I am having a hard time figuring out whether to trust my family doctor who I've put all my trust into for the past 20 years, or to take the advice of many people on this board and to find a good LLMD.
I don't trust many people or their agendas very easily. I don't know why, but I am suspicious about this one and only lab that can do the proper lyme testing...inegex?
Why only that one?
Why would I go to someone that my doctor didn't agree with, throw my relationship with my doctor out the door and just put my trust into the hands of someone I don't know (LLMD).
Why don't any medical doctors want to acknowledge lyme as the serious disease that I'm reading here about?
I feel there are many many wonderful doctors out there who are doing the best they can to save lives every day?
Why are they not in agreement with what the LLMD's are doing?
Why is it so difficult to find the name of a good LLMD, or why do they have to be so private about what they do or who they are?
It makes a person afraid to trust the whole process especially when you read how many people can die from the amount of antibiotic treatments they recieve.....I just don't get it.
I don't mean to be judgemental or say that one is right or wrong.....for someone who is already having a hard time figuring things out and dealing with quite a bit of brain fog, it just does not make sense.....why would the whole world want to keep lyme patients sick?
Also, why don't the LLMD's seem to agree on how to treat or what to treat with? How do you know if you get a good LLMD who is choosing the right treatment?
What if I just totally ignore my lupus diagnosis and assume that since I had a circular rash and had a tick bite that i have lyme....allow the LLMD to give me heavy doses of antibiotics and it really truly is lupus, or a worse disease for some people and the drugs make things worse or threaten my life?
SOOOOOOO Confusing!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Well, I was very confused and disbelieving in the beginning as well. I didnt know what to do. You may be able to work with the doctor you have by bringing material and suggesting things to him. If your doctor doesnt allow this type of thing then he is not a good doctor. NO doctor is perfect.
Ask your current doctor to run lyme IgM and IgG western blot from quest. At least start there. MAybe just maybe it will shed some light.
I tested positive thru quest so it is possible.
If that test is truly negative (get a copy and post your results) meaning no positive bands at all i would invest in igenex. Lupus is not going to be a cheap illness either.
the usual doctor will read only what the lab reports as positive and negative, without looking at the sublte positives in the test.
I wish I has seen a great llmd from the beginning and listened to all the advice that i got here in the beginning,
Your first llmd maybot be the right one. you nee to do what is comfortable and acceptable to you. but like i said a lupus diagnosis is not going to be cheaper for you,, so you might as well investigate the lyme.
Posts: 3905 | From USA | Registered: May 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
If you had cancer would you go to your regular doctor or would you seek out a cancer doctor for his expertise?
If you have Lyme Disease, go to a lyme doctor!
No matter how long you've gone to your regular doc and no matter how much you trust him and wish he could help you; he does not know how to treat Lyme Disease.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Okay so your good doctor has given you dx of lupus. What is he treatment protocol so you don't worsen and lead a disabled life from here on out?
Do you have any sx that aren't consistant with lupus dx? Or have you also developed chronic fatigue, fibromyalgia or early onset dimentia to name a few?
I still don't know what makes this lyme stuff a hot potato? I don't get the politics of the whole thing. I don't understand why some lyme treating doctors are brought up on charges of over treatment.
After all no one tells a cancer doctor he can't continue treating a cancer patient for cancer because they've already had the recommended dosage of "cure pills".
I don't know why Labcorp couldn't/don't identify lyme antibodies in me three different times, when Igenex could identify many lyme antibodies.
How about 11 different band from +/- to +++. How could Labcorp not get that?????
Why would my own primary care doctor be fearful of treating me for lyme disease with more than the standard 21 day of abx? Clinically, there was no doubt from day 10 of illness from hell that it was lyme.
Why would a family doc not explore all avenues about lyme disease & the other vector borne illness that effect their best patients health and well being?
Why would a good family doctor rather label a patient with an auto-immune disorder of unknown origin and not try to find the cause of this patients symptoms and illness?
I've been on this site since '02, sx since 98, gravely ill since 99 and I still don't understand the political, ignorance that goes with this illness.
But hey whys a little circular rash and a tick bite any big deal. Stay tuned.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Hah, perceptive questions.
To understand why, you need the background information.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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julielynne4
Unregistered
posted
So sorry you have to go through this. I know what you mean. It is a shame that we cannot continue to put our faith in the doctors who have provided excellent care for us for so many years.
I had to do what you'll have to do - read, read, and read. I learned more last year when I finally got properly diagnosed than my primary care doctor and my childrens' pedicatrician knows about lyme disease.
There is simply no way that I can continue to put my care in the hands of a doctor who will brush off my true diagnosis.
It is not uncommon to recieve a diagnosis of something like lupus, MS, fibromyalgia, etc. and then treat symptoms. Cure Unknown by Pamela Weintraub is a great place to start to learn more about this disease.
I don't think you necessarily need to throw your relationship with your doc out the door; the more information you can bring to him/her, the better. Some doctors, as they learn, are willing to work with the LLMD to treat the patient together.
Best of luck to you - please keep reading. J
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You need to educate yourself on the lyme disease controversy and that will answer your questions.
Here is a video of a Boston TV station's program on lyme disease. It aired about 1 year ago. A girl on Lymenet copied it so we could all view it:
In my case, I got a positive lyme test from LabCorp, so my doc accepted that I had lyme disease. (He didn't think to test me. I went to an endocrinologist who said it sounded like I had lyme disease, and he did the test.)
But, my doc would only give me 30 days of doxy. When my symptoms immediately came back, he refused to treat me anymore. I felt very hurt and confused. I was suffering! (I now know why he refused to give me more than 30 days of meds, but back then I didn't know why.)
He referred me to a neurologist who refused to believe my positive test and also refused to treat me.
The endo had told me to go to an infectious disease specialist. He recommended 2 of them. One was not taking new patients and the other one refused to believe I had as many symptoms as I claimed, yelled at me, and ordered another lyme tests. So, I didn't return to her.
I was very, very confused about how I was being treated. I didn't even know there were lyme support groups until a coworker of my husband's told him that I needed to find one.
I was forced to go to lyme support groups to find a doc to get me out of my misery. The docs they sent me to were heavenly compared to what I had encountered for the last 5 years looking for a diagnosis.
For 5 years, I was told I was not sick, offered antidepressants, and told that since all my tests were normal, there was nothing wrong with me. This when I could barely stand up, couldn't hold my mouth open to have my teeth cleaned, and wanted to be taken out and shot. That was all that the "regular" medical establishment had to offer me. (In 5 years, none of the doctors I saw ever thought of lyme disease or thought to test me for lyme disease. I was furious about this for years!!!!)
So, it was easier for me than for you to figure out what was going on. I didn't know why, but the regular medical establishment refused to help me. So, in my agony, I got help from wonderful doctors who obviously knew more about lyme disease than any docs I had seen before, including John's Hopkins. (Hopkins doc was puzzled by all my symptoms and said perhaps I had a brain tumor. Two weeks after going there, I got my diagnosis from an endo outside of Hopkins.)
The proof was in the treatment I received from the lyme docs. I got rid of my disease and am now enjoying my life.
You could decide to try letting your doctor treat you. Or, you could give a new doctor, one who has treated thousands of lyme patients, a try. I like to go to a doc with experience in my illness.
If you get a new medical problem, that causes you to have to try a new specialist you never tried before.
When I called a few lyme support group leaders and talked to them about lyme, I could tell that they understood my illness more than anyone else I had talked to in the last 10 years. So, I gladly gave their recommended docs a try. I'm so glad I did.
Now, I talk to people with lyme all the time so that they feel more comfortable with the concept of a lyme specialist, and so they understand this disease better and the controversy that is raging over it.
Regarding Igenex being the only lab to use for tick-borne diseases, well they happen to be the only one that specializes in tick-borne diseases. There used to be a few more, but they went out of business in the last number of years.
It makes sense to me to use a lab that specializes in the disease I think I might have.
Also, it is not that most doctors want to keep lyme patients sick, it is that they have not be taught anything about lyme disease in medical school.
Then, after they leave med school, their continuing education classes teach them that lyme disease is rare, easily treated and cured, and that the diagnosis is easy--see an attached tick, get a big bulls eye rash, a swollen knee, and there you are.
The docs putting out the continuing education classes are miseducating our doctors. But, most doctors are busy so they just rely on the education being sent to them. Then, once someone close to them gets lyme disease and they experience for themselves how the 30 days of doxycycline is not enough to get their loved one well, they begin exploring this disease for themselves.
It is not a coincidence that most lyme doctors had lyme themselves or a close relative had it.
The infectious disease doctor is the speciality that is SUPPOSED to know all about lyme disease and should know how to treat it. But, as you will hear in the video I recommend above, the Infectious Disease Society of America (IDSA) made up its mind about lyme disease a long time ago and they are not open to being wrong.
If you have lyme disease, you have the misfortune of getting a disease in the midst of a medical controversy due to closed-mindedness. Now, the cause of the closed-mindedness is up for grabs. It could be ego, or it could be conflict of interest, or other things. We may never know the answer to this. But, if you do not get well, you will sooner or later be forced to look into the issue of lyme disease and decide for yourself.
We all have to decide for ourselves what we are going to believe.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I had a Family Physician I trusted very much. He is so caring with his patients and helped me so much over the years.
But when Lyme came, he stated it was beyond his expertise. I received the name of a well known LLMD from this forum. She tested with the Lab called Quest Diagnostics which I came back postive with Lyme and co-infections, and insurance covered it. Many recommend Igenix, but I could not afford it.
I know you asked many questions, just wanted to answer the one about labs.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You don't have to trust us. But please read all the links to articles, books, etc. and watch any video links.
We have provided you with some basic but solid literature. Read. Read. Read.
You also know that your health is in a precarious place. The steroids made you worse rather than better. That tells you a great deal.
I hope you can find the answers you need - and the momentum to proceed in a proactive manner.
Good luck. =================
I would start here. As Carol says, "To understand why, you need the background information."
posted
Hi - I too started out where you are, with a regular internist, and the expectation I would go to any doctor to ask what all my myriad symptoms could be stemming from.
Not one medical person I went to identified me in 25 years. It took a nurse well versed in Lyme to tell me online what was going on.
After I knew, I saw my regular doctor and a couple other doctors too in various fields - rheumatology, infectous disease, opthalmology, neurology.
My internist did not know and didn't want to know. I know what you mean about putting trust in your doctor. I found it very disappointing myself when I found out he wasn't going to go there with me
and instead referred me to an infectious disease doctor, who certainly wasn't going to pay any attention. See Pam's writing for that.
So I found another internist who respected the fact I have Lyme, even if they won't treat for it.
The other kinds of doctors I believe do know what's going on but don't want to say - I think they all have been instructed not to tell us. That's what we're up against, and why this community works hard to get the word out about Lyme and co's.
We're dealing with an epidemic here and a lot of insurance companies who don't want to pay for everyone's treatment.
I say it would be so much cheaper for us and insurances to pay for beginning treatment than all the chronic care.
But look at it this way, too - if they don't get people diagnosed, every medical specialty, including the pharmaceutical industry, gets to make a ton of money off of Lyme/co-infections patients trying everything they can to get well.
There's unfortunately a lot of profit motive going on.
LLMDs know Lyme/co-infections can be tricky to diagnose and treat. They are the most scientifically educated about these infections. That's why we go to them. Lymenet folks have the lists for these doctors.
It is ONLY because I am seeing an LLMD that I'm going to get anywhere with my treatment.
Hope this helps.
I'm confused when I read your post again - are you saying you had a tick bite with a circular rash? If so, that is a Lyme infection.
Lyme can present as 320 conditions, and lupus is one of the presentation.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I am still not even sure because the tick bite was on my head and the circular rash was under my arm pit....does the rash usually appear where the bite was?
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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posted
Ok let me put it this way.....and I know I'll probably get bashed for it....but I just have to lay it out there.....
I'm afraid that when you have one lab who seems to be the only lab (or one of very very few labs) who can show positive lyme, how do you know they are not tampering with the results?
And when you have doctors who are not supported by most of the world and have people selling their houses to pay the bill, how do you know they are not finding a way to line their pockets by misdiagnosis?
I know there are alot of crazies in this screwed up world, my issue is that I found out a long time ago that I don't trust anyone until they give me a reason to.
There was something said above about wouldn't I see a cancer doctor if i had cancer? Yes I certainly would!
I'm pretty sure my family doctor would refer me to a cancer doctor though, just like he did refer me to a rheumatologist when my inflamation was at it's worst.
I'm sure he wanted me to get to the bottom of it.
Ok so now I'm ready for the crap to hit the fan because I voiced my true fears about all of this.
Go ahead and vent on me if you need to. I need to vent too, I've been to the point with this sickness on and off for the past 3 years where i've wondered why i just can't end my life.....
but I wouldn't do that because of my beautiful family and I realize that is the most selfish thing anyone can do.
Also, I will educate myself when my brain will allow me to.....right now it's not possible.
i do work and I take care of 5 children all day every day....for the past week they have not had school....
so when i read, it takes me about 15 minutes to read a paragraph and actually comprehend it.....
and that is a long time to sit in front of the computer with 5 kids wanting my constant attention.
I'm doing the best I can with what I have.
So please don't treat me like I'm lazy and don't want to put the effort into reading the text provided here.
I have to leave now to pick my son up from the Y....so hopefully after a little fresh air i can find a little time online since i have tonight off and do some reading.....
again, thanks for your help and support.
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I never had a bite or rash that i saw
Posts: 3905 | From USA | Registered: May 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by kbaucher: And when you have doctors who are not supported by most of the world and have people selling their houses to pay the bill,
how do you know they are not finding a way to line their pockets by misdiagnosis?
Yes, there are many doctors who misdiagnose.
But those are the doctors who are being bribed by the insurance companies to not diagnose Lyme Disease.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
Thanks guys....I was just hoping to find someone who has had these same questions arise as well as me....
Wasn't looking for anyone to convince me of anything, maybe just help me understand all of this information better.
Again, I am not positive it was a bullseye rash.
It was circular under my armpit....I am curious to how many different rashes can be circular, especially under the armpit where it is sweaty with the possibility of how many different kinds of bacteria.
I'm not finding much info online other than pics of rashes with rings around them.
My mind is like a big ball of mush....so maybe I do seem a little slow with grasping it all.
Good night and God bless.
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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posted
Spent 2 years after my son had flu symptoms, a bulls eye rash & a positive lyme test with our trusted Dr.
As my 5 yr olds symptoms progressed, we went to all the specialists he recommended, all agreed he had lyme, NONE helped him.
All tried to explain away my little boys symptoms as anxiety, silent migraines, his imagination, a phase, "he'll outgrow it", and one Dr. said he'd just have to live with his persisting symptoms.
Whem my son started losing his vision & they still didn't do anything, I lost trust and left.
Decided I had to trust my gut. Sought out a LLMD who has saved my son's vision and life.... He was worth every penny.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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and songbird, I so totally would have done the same thing! Thank God you did~!
My husband and I were just talking about the questions I posted here and my concerns about it all.....
when i told him that some people sell everything they have, and end up in foreclosure to seek treatment that they are sure they need....
he said, "well yeah"....I hope we are never in that situation....not that we own anything anyway....
but i think i realized that you have to get to the point where you know inside yourself which is going to be the best avenue for you....
unfortunately i am not there yet, possibly because other than some arthritis, fatigue and brain fog, I have been doing extremely well compared to the past couple of years....
i know lupus can go into remission, so i've been wondering for a while now if i may be in remission....i do not see anyone for lupus anymore.....i haven't had any severe symptoms for a while now.
steroid shots always made me better not worse...plaquenil on the other hand made me break out into head to toe hives....yuck!
if my condition worsens i will definately seek an LLMD....
in the meantime, i am going to be going to my family doctor to ask about an ADD prescription to try which is what my son takes with alot of improvement.....
and i will be asking him to go into depth on what his feelings are on lyme and the medical politics of it all....i am very curious to hear his thoughts....
just so i know for future reference....he did a lyme titer test for me when i asked, so i know he is not closed minded to the idea that i may have it....
so we will see...
ok really this time, Good Night:) and thanks again for the help!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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I am sorry you are going through all this, and trying to cope with it while having neuro symptoms that make it difficult for you to read.
I am fairly new here, and I don't have any agenda. I had the same doubts as you a few months ago.
At the end of last May, I got bit by a tiny tick on my left leg, and started having flu-like symptoms within 10 days. I never had a rash.
I was keeping a diary at the time, and later I went back and looked, and I had written "I wonder if it could be Lyme disease?"
The flu symptoms went away, and came back again 6 weeks later. Meanwhile, I was having pain in my neck, shoulders and right hip and other joints and muscles, mainly on my right side, and sometimes bad fatigue.
I did not connect those symptoms to the flu and fever or to the tick bite at first.
When I got the second fever (about 8 weeks after the tick bite), I went to my trusted family doctor and asked her whether it could be Lyme disease, which I had been warned about as a child when I was in Girl Scouts.
She laughed and said, "You don't have Lyme disease. You caught a virus. Go home and take Advil."
I went home and started reading about Lyme disease, and then looked back through my diary, and realized that my symptoms sounded exactly like it. So I went back to my doctor and asked her to test me.
She did that, but the nurse left me a phone message to say, "Your test was negative. You don't have Lyme disease."
So I went back to the doctor to ask her what I DID have. She had no idea. She had several suggestions--flu virus, rheumatoid arthritis, sciatica, perimenopause--but none of them explained all the symptoms I was having.
She seemed to be only guessing. She finally admitted she did not know what I had. She believed Lyme disease was exremely rare and did not exist in our area.
I went back to her with research, showing that Lyme had been reported in people and dogs in our county and the county where I got bitten.
I was extremely alarmed when I read that Lyme can progress to attack your brain and heart and cause disabling arthritis. So far I do not have neuro or cardio symptoms. I was terrified of getting this if I did not get some treatment.
Since my doctor did not know what I had, and I was convinced that my symptoms matched Lyme, I asked her to give me antibiotics and see what happened, and she did.
She did not know what treatment was appropriate, so she went and looked it up in a book of guidelines. I didn't know it then, but she looked at the IDSA treatment guidelines.
She thought she was being generous by giving me 3 weeks of antibiotics, because it was the upper end of the suggested amount.
I responded to the antibiotics. I showed her more research that proved that the spirochetes can survive short courses of antibiotics, and convinced her to extend mine to 3 months instead of 3 weeks.
I thought I could trust her more than either an ID doctor or an LLMD, because she did not have any agenda in the political mess I had started reading about.
I improved some during the 3 months. When the drugs ran out, I relapsed completely within 2 days.
I was astonished. I thought that because most doctors believed that Lyme could be cured in 2 or 3 weeks, people must at least appear to get better in that short time and then relapse later, for so many doctors to believe it.
I thought my symptoms would go away in 2 or 3 weeks. They didn't.
I thought that because my symptoms were mild, it would be easy to get rid of them. It was not.
I thought that 3 months of antibiotics would be more than enough to get rid of the disease, since some research said 6 weeks was enough. But it was not.
My doctor did not know what else to do after that, or where to send me. She resorted to offering me pain meds, antidepressants, sleep meds, or something that would help my symptoms, because she really wanted to help.
She did listen to everything I told her, looked up information in what she thought were appropriate reference books, and read the research I showed her. She still did not know what to do.
She had never had a patient with Lyme, or more likely, never had one who knew they had Lyme.
I told her I wanted to go to an LLMD, but was suspicious because you had to find them from a secret list on the internet, and the nearest one was 2 states away, and they don't take insurance.
She thought it sounded fishy too.
After I read Cure Unknown and watched Under Our Skin, and read a lot of patient stories from this board and various others, I understood how most Lyme patients got misdiagnosed and given the runaround for years while their illness got worse.
This seemed incredible to me--how could it be possible? Nevertheless, strange as it is, it is true.
I have two other chronic health conditions for which I had already gotten the runaround for years, going to many doctors who could not diagnose me, and then knowing what I had but not being able to find a treatment.
One of them is asthma, for which, ironically, they gave me piles and piles of antibiotics, which did nothing. I later read research that said doctors know that antibiotics do not help asthma, but they give them out anyway because patients expect them to do something.
Now that I had a disease that antibiotics could actually help, it was a lot harder to get them. Meanwhile I know someone who has been on doxycycline for 8 years continuously because of acne.
I was determined not to make the rounds of more doctors who would tell me either they didn't know what was wrong, there was nothing wrong, or there was something wrong but no cause or cure so I would have to live with it.
If it was indeed Lyme, I could not just live with it because it would get worse, and I would become disabled and lose my job.
So I went to the LLMD. It turns out that he has treated many, many Lyme patients, and he and his staff have real expertise in the subject.
He spent two hours with me at the first visit, reading the 30 pages of narrative and questionnaires I brought with me. He asked me lots and lots of questions.
He had various scientific books about different aspects of Lyme and coinfections on his bookshelves, looking like they got used.
He did a very thorough exam, considered my entire history of symptoms, and diagnosed me with Lyme.
Then he gave me a prescription for doxycyline, a lot of instructions about some supplements to protect me from yeast, flu, etc., and what they were for (he didn't sell me any--just told me what I needed), and suggested reading material so I could learn more about Lyme.
He was able to tell me about different treatment options, and to evaluate my prognosis and tell me he thinks I can get better.
He knew all about coinfections and sent me to be tested for them.
He asked me to bring a written list of all my questions for him, and then made sure he had answered all of them before I left.
My family doctor, who has never seen a Lyme patient, could not have done any of this because she lacks the knowledge and experience.
She could never have spent 2 hours with me discussing anything, because of insurance requirements. She usually spends about 15 minutes with you.
My LLMD was very conscientious about minimizing my expenses. His prices are entirely reasonable, given the long time he spends for each appointment and the obvious amount of experience he has in his specialty.
His office is modest, and not open every day of the week. He only asks people to come back every 3 months instead of every month, because most of them travel to get there.
I had to wait several months for an opening for an appointment. They always have a waiting list. If he were in it for the money, he could open every day and spend a lot less time with each patient.
I have been to other specialists who obviously were heavily motivated by money. I remember an orthodontist who spent most of my 10-minute appointment talking about playing golf.
I remember a surgeon who had a very fancy office, charged a huge amount, and tried to make me sign a consent form for elective surgery at my first visit, without giving me time to think about it or get a second opinion.
You are a rational person (or it sounds like you were before Lyme brain, haha), so you will be able to judge for yourself.
Go to an LLMD, a good one who is a member of ILADS. Get their opinion, ask all the questions you can think of.
If the LLMD thinks you have Lyme, then try the treatment they recommend, and see how it affects you. Three days after I started doxycycline from my LLMD, I had a big and obvious herx.
Then I was really convinced that what I have is Lyme. Now after more than 2 months on doxy, I think I am improving again, the way I had started to on my first antibiotic.
I am very thankful to have found my LLMD, and to have gotten past my doubts in order to do it. If not, I would be a lot sicker by now, and still going from one specialist to another who couldn't help me.
Specialists in the left big toe are more likely to tell you if you do or don't have a disease of the left big toe than to tell you what is wrong with your whole body overall.
Lyme affects every part and function of your body. That is why Lyme specialist LLMDs tend to be general practitioners and not specialists in one body part or system.
If you do have lupus, it could be caused by Lyme, and get better with Lyme treatment.
Everything happens for a reason, if you have a scientific outlook, so don't accept that whatever is wrong with you has no cause and occurred randomly.
If you do not have Lyme, an LLMD is the most qualified person to be able to tell you that. They have plenty of patients on their waiting list, so they will be happy to dismiss you if it isn't Lyme.
Good luck! I hope you figure out how to get better soon. You are not alone with your doubts and confusion.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
LightAtTheEnd, God Bless You and thank you so much for sharing.....
that's along the lines of what i think i needed to hear.....someone else who was very very skeptical at first!
I took every word of what you all have said to heart!
Hopefully my kids will have school some this week and I can do more research and reading soon!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Check out Stony Brook University lab in NY for the Lyme testing. Google it.
I got a Western Blot from them, and it is arguably as accurate as Igenex. And your insurance will probably cover Stony Brook. Your doctor just needs to know to order it from there, and to also ask that the non-CDC criteria bands be reported (unless you only want to know about bands 41, 23, 39).
Personally, I would do some antibiotics for 3 weeks beforehand to bring everything out for the testing, then test in the 4th week.
Unless you provoke it first, you might not get an accurate result.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Oh, also, if you had the circular rash, you did have Lyme. Maybe you still do...I dunno, I'm not a doctor.
Posts: 4590 | From Midwest | Registered: Jun 2008
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You all may get a chuckle out of this: The first time I read Lymenet, I remember thinking, "Wow, I sure don't want to be duped into becoming one of THOSE crazy, obsessed, conspiracy theorist nutcases."
A few months later I came back asking for help, and the "crazy people" recognized me as one of their own and took me in, so here we all are.
And that's how I found a good doctor who is both willing and able to help me.
(Note for anybody who is brain-fogged today: I really did think that at first. I do NOT think y'all are crazy now. Nor am I. Okay, maybe I am, a little, haha.)
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Originally posted by kbaucher: Lymetoo, I loved what you wrote on your homepage! I loved your suggestions at the end! Thank God you have found a way to live your best life!
-----
Thank you! You can do the same!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
O Lord, another snow day here in ohio, kids off school for waaaay too long! LOL.
I got a wonderful nights rest because my sweetie went and got us a 4" thick memory foam topper for our bed! It is a firm mattress and I hadn't slept pain free in forever!
I could not and did not want to get out of bed this morning! That made a very nice Valentine's present!
I don't think any of you are crazy.....I have had my suspisions that maybe you had been taken advantage of, but I see that you all seem to stand firmly behind your doctors and the treatment you need.
i tend to get a little crabby sometimes when i don't feel well and i can't figure things out....
God bless you all and I will check in later. it's really nice to have you all to talk to.
(just thought i would add that i had been to a lupus message board while i was trying to cope with a lupus diagnosis.....
and they were very good people who were reaching out to me trying to help.....I never felt that I belonged there.....
because my sickness was one horrible bout of a "flare" and then progressively i've been getting better ever since.
It broke my heart seeing how incredibly sick most of the lupus sufferers were, how many of them had horrible organ involvement....
I always wondered if my situation would turn into that.....but of course thanking God that mine was "mild" compared to the rest.
Here as far as symptoms go, i feel that I really fit in. truly. i think now i am past the freaking out stage and am going to push forward to just trying to get better.
When i got the lupus diagnosis, i had horrible nightmares that i was driving down the road in our minivan with my whole family....
i was going down a big hill and at the end it just dumped into an ocean....my brakes wouldn't work and i couldn't do anything to stop the van..
i would wake up with my heart pounding and in a horrible sweat because i couldn't do anything to save my family.
i used to have horrible thoughts about what would happen if i were gone and my 5 kids ranging from ages 5 to 13 now had someone step in as a "new mom" and it wasn't something i could cope with.
so thank God that kind of shock is all behind me 3 years later.....but i definately was caught off guard when i learned about people being misdiagnosed with things like lupus and ms when it's really lyme.
i think i went through a little mini fit of some sort this past week....normally i am not a hard person to get along with and i usually just go with the flow to avoid any kind of confrontation...
thanks for putting up with me
you guys are great!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please get the DVD of the documentary UNDER OUR SKIN.
It's about $35 but will explain SO much. For the sake of everyone you know, please see this DVD. NetFlix, some other movie rental places and your library can get it, too.
Even if you had not had the rashes after tick bites, etc . . . this documentary is important for everyone who cares about anyone. It's not just us, everyone needs to learn about lyme and the importance of proper treatment (which can take different avenues but must specifically target nfection). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
What you're feeling is so unbelievably common. I can so relate. It was such a painfully frustrating process for me (and most other patients unfortunately).
[ 02-16-2010, 04:07 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
LOL, I just posted about my own mini-fit that I had this weekend.
I have also previously had three nightmares that were obvious manifestations of my anxiety and fear about having Lyme.
I agree with Keebler about the DVD--watching Under Our Skin with my relatives helped me a lot in understanding the political mess and getting their support.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by kbaucher: [QB] I am having a hard time figuring out whether to trust my family doctor who I've put all my trust into for the past 20 years, or to take the advice of many people on this board and to find a good LLMD.
Trusting someone is different than following them blindly. It's ok to consider the possibility that they could be wrong, or that their advice isn't the best option available. There is nothing wrong with siding on caution and investigating before committing to a particular position.
quote: I don't trust many people or their agendas very easily. I don't know why, but I am suspicious about this one and only lab that can do the proper lyme testing...inegex?
In my opinion you shouldn't trust anyone without being skeptical and curious. As far as Igenex goes, they just happen to be the best laboratory in terms of specialty. You can go to other laboratories, like Stony Brook, Quest, Labcorp, Central Florida, Fry Labs and a long list of others including MDL, Specialty Labs in California, and so forth.
A smart person always considers how to get the best bang for their buck, and Igenex just happens to be the best laboratory in terms of accuracy. The reason they are the best is because those who run and operate the laboratory were affected by Lyme Disease and associated tick born infections. People who are touched personally tend to work the hardest to answer the tough questions. Igenex has proof to back up their credibility, so if that's what you're afraid of, that's not a problem. If you're going to get a positive test result, the lab who has the highest accuracy and most sensitivity is Igenex.
quote: Why only that one?
You can pick the laboratory, just beware that like when buying a car -- some perform better than others. You might still get a positive from the lower quality labs, but a negative test result won't change the reality that blood and fluid testing for Lyme isn't reliable alone to diagnose Lyme Disease.
quote: Why would I go to someone that my doctor didn't agree with, throw my relationship with my doctor out the door and just put my trust into the hands of someone I don't know (LLMD).
I wouldn't throw the relationship out -- why toss the baby out with the bathwater? Trusting someone doesn't mean you accept what they say as the gospel. Personally, I did a lot of research on my LLMD before I chose him (my current one). You don't have to be in the dark about that either. If you want to see an LLMD, we can help you. Researching the doctor is no different to me than researching the laboratory you'd like to use. You pick the one that seems most suitable and capable of satisfying your demands and needs.
quote: Why don't any medical doctors want to acknowledge lyme as the serious disease that I'm reading here about?
They don't want to acknowledge it because currently science is in a transition phase with this particular disease. For a new theory in science to evolve, the older theories supporters have to defend their position. Many physicians who discovered (and worked on this disease) early on are now well known and respected researchers who maintain that the disease follows a particular path that they've defined. As new science has evolved, we're finding that their theory isn't as solid as they claimed. New physicians and researchers are finding that the story is much more complicated.
For the new research to come to light, not only does the evidence have to accumulate through studies and clinically observing patients over many years, but also that evidence must face the scrutiny of the establishment that discovered it -- including the opposing theory supporters. Think of it like Democrats vs. Republicans. Each side truly believes it's doing what is right, but at any one given time, one side is usually in the majority and has control of the Presidency, Congress, etc. We spend 8 years with Republicans and now we're spending time with a Democratic majority.
Right now, the old theory (Lyme is generally understood and easy to treat) happens to have the majority of supporters. In time this will change and it will change because the older theory is constantly losing ground. When there are black clouds and a light rain falling in the distance, you know it's only a matter of time before it begins raining where you are too. That's what's happening with our understanding about the chronic nature of Lyme.
quote: I feel there are many many wonderful doctors out there who are doing the best they can to save lives every day?
Absolutely. However, good intentions don't mean they know everything. In-fact, the more complicated something is, the more a specialist is required to dig deep to find the answers.
quote: Why are they not in agreement with what the LLMD's are doing?
The reason is because there are polarized beliefs, just like with Abortion. Both sides are absolutely certain about what they believe, regardless of what logical facts actually support them. Both sides have an agenda, and the patients are the ones left waiting to see where the "truth" wins out. It has been clearly demonstrated that there are doctors on both sides who are taking advantage of patients. There have been shown to be doctors and researchers on both sides who are "egotistically" bound to their particular point of view. The reality is, money, ego, scientific evolution of the opposing theories, and other factors are contributing to the confusion. Some of the doctors supporting the older theory are currently involved in legal issues regarding conflicts of interests. This doesn't prove they're wrong. But there are also physicians who have saved thousands of lives who are being brought up on charges simply because they treat Chronic Lyme Disease. This also doesn't prove he's wrong.
quote: Why is it so difficult to find the name of a good LLMD, or why do they have to be so private about what they do or who they are?
This question is easy to answer. I can help you find someone who is highly qualified and competent because I keep a list of physicians. It is your job to do research on them and decide whether to invest in them or not. The reason many are private regarding treating patients is because currently there is a witch hunt going on. Physicians who treat the disease are targeted by insurance companies. Insurance companies take advantage of the knowledge that Lyme Disease is not a settled issue. If there is a chance to save money, they are going to do that because that's the business they're in. It's easier to report a physician to the state Medical Board if they're costing you money than to politely tell them "Hey listen, your theory is expensive. We'd prefer if you wouldn't side with the Chronic Lyme Disease proponents."
If you stick your neck out, prepare to have it chopped off, that's simply the way a free market economy works. If you want to avoid having it chopped off, then keep your mouth shut, keep your head down and work quietly. This is also the reason most physicians who treat Chronic Lyme Disease don't accept insurance. It's not that they don't want to, it's that they literally can't afford to. It puts them at risk of being reported. Most of the care we receive from doctors when an insurance company is picking up the tab is actually "minimal." Meaning, the doctor does as few tests as he can, even if it's not in the patients best interest. When a doctor meets the requests of keeping costs down, insurance companies often reward the doctor by giving them more financial support. Again, it's the way the free market works.
quote: It makes a person afraid to trust the whole process especially when you read how many people can die from the amount of antibiotic treatments they recieve.....I just don't get it.
Absolutely. Medicine is no different then politics. They're intricately tied as a result of money being the conjoining factor. When you choose to treat Chronic Lyme Disease, you must remember that many of the antibiotics used aren't as dangerous as people claim. People gladly swallow "years" of Doxycycline and Tetracycline just for vanities sake - to prevent acne or resolve it.
It's true though that some of the antibiotics are dangerous and come with risks. The risk to benefit ratio must always be considered in light of the evidence supporting the disease, whether that evidence is circumstantial or objective. Lyme disease is unfortunately poorly understood in-spite of what some doctors say. In-fact we know it's poorly understood because the controversy makes that self evident. If it was so simple, then there wouldn't be any controversy now would there?
quote: I don't mean to be judgemental or say that one is right or wrong.....for someone who is already having a hard time figuring things out and dealing with quite a bit of brain fog, it just does not make sense.....why would the whole world want to keep lyme patients sick?
Individually, it's unlikely that more than a fraction of a percentage of anyone would be cruel enough to want to keep someone sick, but institutionally -- (Financially speaking) -- the institution is designed to keep people sick. Our entire method of healthcare in the United States is designed to treat disease, not cure it. Cures take many years to arise even when they already were figured out as a result of what I explained earlier -- the evolution of scientific theories. Another example of evolving scientific theories is that of washing hands. This was an instant cure (via prevention) for saving lives centuries ago. Yet millions died -- even after it's discovery, because a shift in understanding had to take place. People were highly opposed to just doing a simple thing like washing hands. The idea that germs were killing patients was called far-fetched and insane! Yet, that is exactly what happened. It took a long time for people to adapt and accept that theory. If you'll keep buying pills from me to treat your Lupus, why would I invest in creating a medication that you take once and it'll cost even less (or the same) as a single purchase of medicines which treated your symptom?
I'd rather invest my money in creating viagra pills than curing cancer -- after all, you and or your partner will keep coming back for more!
quote: Also, why don't the LLMD's seem to agree on how to treat or what to treat with? How do you know if you get a good LLMD who is choosing the right treatment?
A good LLMD is open to traditional as well as unconventional (and even poorly understood treatments), and will use a risk to benefit ratio when accessing how to advance. He or she will explain to the patient carefully that things will be done systematically and if the results are good -- great, if not, we'll keep going down the list. If the list gets to a point where experimental treatments that are far-out have to be used, then he or she will be willing to use them, but only if the patient consents and feels it's what they want. They're willing to constantly evaluate new evidence and keep up to date on the latest options. To be honest, there aren't many who fit the bill of "perfect" in my mind when it comes to treating Lyme. Individual specialists have various levels of experience. They don't wake up one day and all come to the conclusion that IV meds are right for everyone. Some have practiced for 20 years, some for less than 1. This is why their ideas vary so greatly.
You know it's right for you when you've done all you can in terms of homework and having spoken to other patients -- and come to the conclusion that this person provides the highest probability of getting you well. You will never be absolutely 100% clear until you've actually succeeded.
quote: What if I just totally ignore my lupus diagnosis and assume that since I had a circular rash and had a tick bite that i have lyme....allow the LLMD to give me heavy doses of antibiotics and it really truly is lupus, or a worse disease for some people and the drugs make things worse or threaten my life?
There isn't any reason you can't treat the symptoms and investigate Lyme Disease as long as you assume that "both" may be happening. Under those conditions you can choose treatments that are safer for both issues. For example, you might say -- oh, well steroids are very dangerous if I have an infectious disease but they can be very useful if I have Lupus. Well -- you should investigate other treatment options for lupus that will not worsen a potential Lyme Disease infection.
Immune system modulators are different than immuno suppressant drugs. Many Lyme Disease specialists who are good at what they do, know how to treat the symptoms of diseases like Lupus or other autoimmune conditions. These are questions you ask the specialist before you choose to commit to that treatment.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by kbaucher:
I am still not even sure because the tick bite was on my head and the circular rash was under my arm pit....does the rash usually appear where the bite was?
Ok let me put it this way.....and I know I'll probably get bashed for it....but I just have to lay it out there.....
The rash can appear at the site of the bite, or it can appear at an entirely different part of the body. It is also possible the rash may not show up at all -- or, it may show up looking like something other than the bullseye.
No, feel free to say exactly what you feel and think. We're not here to convince you. We're here to answer your questions to the best of our ability so that we can support you in making the right decision for yourself.
quote: I'm afraid that when you have one lab who seems to be the only lab (or one of very very few labs) who can show positive lyme, how do you know they are not tampering with the results?
There isn't one lab. Igenex just happens to be the BMW of specialized labs. BMW makes the best cars in the world (debatedly), and Igenex produces the most sensitive and highest quality test currently used. It's not perfect, and many patients who show up positive on one test will show up negative on another -- including Igenex. The test isn't static, meaning that a particular blood sample might contain the reactive antibodies while another sample of CNS fluid doesn't. The disease may cause a production of antibodies after the patient is given antibiotics for a brief period, thus producing a positive on Quest, even though they ran an Igenex test "before "using antibiotics and that test came back negative.
Additionally, Igenex, just for the sake of satisfying this question, has independent reviews of their laboratory testing. This is how we know they're not tampering. They have to meet a variety of standards to get certification and authorization to be officially accepted in different states. Igenex is Medicare certified, CMS, and has CLIA certification and is approved in about 10 states (if I recall) by the state Health Departments.
Again, you don't have to use Igenex. It's not the only lab, it's just the best lab based on clinical and patient experiences.
quote: And when you have doctors who are not supported by most of the world and have people selling their houses to pay the bill, how do you know they are not finding a way to line their pockets by misdiagnosis?
That's why you choose credible physicians that demonstrate good results by having gotten many other patients better. You find out everything you can in advance.
quote: I know there are alot of crazies in this screwed up world, my issue is that I found out a long time ago that I don't trust anyone until they give me a reason to.
Good, why get burned if you don't have to? This is your life on the line. You'd be an idiot not to think like this.
quote: There was something said above about wouldn't I see a cancer doctor if i had cancer? Yes I certainly would!
I'm pretty sure my family doctor would refer me to a cancer doctor though, just like he did refer me to a rheumatologist when my inflamation was at it's worst.
That comparison with Cancer isn't really on par with Lyme Disease. A comparison with having AIDS in 1984 would have been better. If you had AIDS/HIV, you'd want to see whoever was on the cutting edge and had the latest and best options. Your doctor (in 1984) probably knew little or nothing about HIV/AIDS beyond the controversy and stories, just like people hear about today. Unless you investigate thoroughly, you can't (as a doctor), understand complex hard to treat infectious diseases, whether they are controversial or not.
quote:
Ok so now I'm ready for the crap to hit the fan because I voiced my true fears about all of this.
Go ahead and vent on me if you need to. I need to vent too, I've been to the point with this sickness on and off for the past 3 years where i've wondered why i just can't end my life.....
but I wouldn't do that because of my beautiful family and I realize that is the most selfish thing anyone can do.
Geez, anyone who would vent on you is stupid. You're just voicing the same concerns we've all heard a thousand times. Half of us -- if not more -- have wanted to die because of this illness. Not by choice obviously. We just would have prefered that we not woken the next morning, if you catch my drift.
It's ok to feel so powerless and to share that. Whether you have Lyme or not -- the feelings of being trapped and confused when you don't know with certainty what's happening to you, is the same.
quote: Also, I will educate myself when my brain will allow me to.....right now it's not possible.
i do work and I take care of 5 children all day every day....for the past week they have not had school....
so when i read, it takes me about 15 minutes to read a paragraph and actually comprehend it.....
and that is a long time to sit in front of the computer with 5 kids wanting my constant attention.
I'm doing the best I can with what I have.
So please don't treat me like I'm lazy and don't want to put the effort into reading the text provided here.
I have to leave now to pick my son up from the Y....so hopefully after a little fresh air i can find a little time online since i have tonight off and do some reading.....
again, thanks for your help and support. [/qb]
Hey, you take your time and do the best you can when you can. You'll get to it, it does take time. The fastest way to get most of your questions answered is to do two simple things.
1: Buy Cure Unknown used off Amazon.com 2: Buy Under Our Skin on DVD.
After you've done this, if you come to a place where Lyme Disease is confirmed as a diagnosis, you can give the DVD to your doctor to borrow. I gave one to my primary and others. It helped them a lot and they didn't have to read tons of information. Doing those two things won't kill you in terms of brain fog. Cure unknown isn't a complicated book and if you enjoy movies, Under Our Skin is more like a movie than an educational documentary -- it's actually "enjoyable."
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Metalic, you are an amazing person for taking so much time to answer my questions....and with such tact! Thank you!
I have an appointment with my doctor for Friday afternoon to discuss this and the brain fog....
I am going to be asking for ADD medication for now.....just because my son was just recently diagnosed and I know with out a doubt he got it from me....
so maybe that will help with the brain fog/focusing problems.....just hooked up a wii i got for free till saturday.....
gonna enjoy it with the kids tonight....
God Bless!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
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posted
You're welcome. Keep us updated when you can, and if you need further help just ask.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I'm sorry if I came across the wrong way when I said "if you had cancer would you see a cancer doctor". I was just making the point that if you do indeed have LD, a Lyme doctor is the only one that can help you.
I know because I have been in the lyme arena for 4 years now. I have plenty of experience with mainstream doctors.
As far as labs. I didn't use Igenex. And the actual truth is that lyme disease is a "clinical diagnosis". The test are only used to back up the clinical diagnosis.
This is why a regular doctor cannot diagnose LD. They only go by test which are extremely inaccurate. They don't understand what each individual band means and so on.
If I had a lupus diagnosis or any illness with an unknown cause and unknown cure, I would look elsewhere for answers. Something causes these illnesses and I would want the cure, not the temporary fix. As a matter of fact that is what I did after being diagnosed with Fibromyalgia.
Also, if you had a tick on your head and a bullseye under your arm, you probably had 2 ticks on you and just didn't know it. Or one tick and two bites. Many of us never saw the tick or the rash.
I totally know where you are right now. I know your frustration, I've lived it myself. None of what I say is meant to be mean. It is just my attempt to help you before you get as ill as I did.
I hope you find your answer!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I had the same concerns that you have expressed. I trusted my Infectious Disease MD and believed him when he assured me that I would be cured after the standard 1 month of PO Doxy and then another month of IV Rocephin. I read posts here as well, and thought how sad that folks feel that they must take so many meds, and I believed that they were just making themselves sicker by doing so.
Then, my symptoms returned, and my ID dumped me...wouldn't even talk to me! From there, I experienced what others here have described....being turned away from MD offices, or told that there is no Lyme in this state. Guess what? I had tested positive at a non-Igenex lab. I met CDC criteria for Lyme and RMSF. So there IS Lyme in that state!
With no one in the medical community willing and/or able to help me, I turned to this site. Fortunately for me, I was treated early in the course of the disease, and so I never progressed to the level of debilitation that many here have suffered, and thus I have been able to use information found here to help myself since my last round of abx (mid-August)....and I am 85-99% better. But if I relapse, I am hightailing it to an LLMD
The symptoms are scary, and with no one that you can call on to help, this is the loneliest disease!! Thank goodness for this post, and the support offered here.
I hope no one is offended by your post, because in the beginning, we all wanted to believe our MD's who told us we would easily be cured. We probably all started out thinking exactly what you have expressed, and had the same questions/concerns.
Take care
Posts: 283 | From where the ticks are! | Registered: Oct 2009
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I hope no one is offended by your post, because in the beginning, we all wanted to believe our MD's who told us we would easily be cured. We probably all started out thinking exactly what you have expressed, and had the same questions/concerns.
That is true for most people here. Well said!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
My husband was diagnosed with mixed connective tissue disease and then dermatomyositis, basically difficult autoimmune conditions with scary treatments and even scarier outcomes. His case was complicated by pulmonary fibrosis which the pulmonologist let us know gave my husband probably about 5 years.
The traditional treatment of steroids and cytoxan did nothing for my husband. I researched and researched and found the antibiotic treatment of autoimmune conditions through the roadback site www.roadback.org This helped me connect the dots and I eventually had my husband tested for Lyme disease.
Lyme disease treatment has not only stopped the progression of his "autoimmune" condition but almost completely reversed it including the pulmonary fibrosis which has completely shocked the pulmonologist.
Yes, it would be much more comfortable to have a disease that is more accepted by the mainstream doctors. Actually, the dermatomyositis is accepted by mainstream doctors but unfortunately the treatment protocols are ineffective and toxic.
I'll take a Lyme diagnosis and treatment that is outside the mainstream but that gets at the root cause of the illness over an autoimmune condition accepted by the mainstream but improperly treated.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
I just wanted to pop in today and share that I went to my doctor the other day and he agreed to try me on ADD medication for 30 days.....
The very first day I was on the time released medication, I noticed a major difference!
My head was functioning at a completely different level. i was able to be attentive to all 5 of my kids, think about what needed to be done during my day, AND follow through....
I worked last night and was really on my toes....my boss just looked at me like "what happened"...
anyone else here deal with ADD?
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
ADD is a common diagnose that many Lyme patients have. I'm one of them.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Me, too. ADD is well-documented with neuro-lyme.
Kristy,
I do hope the ADD meds help correct the underlying problem rather than just add a burst of energy.
If at any time, you feel "wired" or "hyped" be especially careful as that can lead to adrenal exhaustion which is a huge concern for lyme patients. Irritation or even heightened sensitivity to stimuli (lights, sound, motion, too many people around) can indicate the medicine may be too much for your system.
Be sure to still get the rest your body needs.
Some of the ADD meds can also be very hard on the liver or kidneys and that, too, is a concern for those with lyme as a high level of toxins (from lyme) already stresses the body.
You might consider some nutritional supplements for support measures.
Take care. -
[ 02-21-2010, 06:12 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I know what you are saying, dude. I am kind of new to this whole Lymes thing myself, and I'm not a total convert. I know that my regular doctor did nothing and refused me ABX. I went recently to a Lyme doctor and got the ABX and now I'm feeling a lot better.
I'm not sure what to think about the people on heavy ABX for years on end and still sick. My gut tells me that if you are still sick after a year of ABX then it's not working. But I dont know and I would never try to tell somebody what to do, especially if they've been dealing with it for a long time. Personally I feel that a few months of ABX combined with some natural remedies, exercise and good habits will get me through this.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Kirk,
I would highly recommend you watch "Under Our Skin" It's a documentary on LD.
One of the men on there said that he didn't feel any better until he had been on antibiotics for over three years.
Before seeing this movie, my husband and I were skeptical too, but not anymore.
I know of two people personally who have been on antibiotic therapy for many years and are still not completely well but are doing MUCH better now.
There are other diseases out there that require long term treatment. This is just the one that the main stream docs don't know yet.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Thanks I will check that out. Like I said I am new to Lymes, I had the great luck of getting it 6 months ago. I guess what confuses me is that I know 2 people who've had it and were 100% cured after 2 months of ABX. Then on the other hand, I do know one person who says she struggles with symptoms returning for years.
I am doing my best to get as much info. as possible and this site is gold. I am ordering a couple of books so I can go into this as well armed as possible. It does seem to effect different people, different ways. But why? Are there different types/strains of Lymes? Or are different people just more or less resistant?
Posts: 41 | From astoria, new york | Registered: Feb 2010
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posted
Honestly, I was pretty skeptical about the whole thing myself, until I got better with treatment for Lyme.
By that point, I'd been sick so long, I'd have tried anything. I'd been diagnosed with and/or treated for all kinds of things (Lupus, Fibromyalgia, MS, etc. etc.), so what's one more?
But I got better on the antibiotics. So I don't care about the politics, I don't even care if it's really Lyme Disease. I got my life back to normal taking antibiotics, so that's what I'm going to keep doing.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
I find it frustrating sometimes actually. I have no official diagnosis as of yet. A few single + signs on my Igenex Western Blot test. Went to the ER 6 times. Eventually they got frustrated and asked me if I wanted counseling. I have a holistic doctor that treats me with herbs. He was able to turn the volume wayyy down on the symptoms within a few days. I still notice certain things trigger symptoms to a lesser degree then before. Started taking Doxycycline and Azithromycin. Only 3 days of Azith though due to insurance issues. My frustration is that I don't know that either the herbs or antibiotics is actually getting to any of the root cause of whatever is going on. Just seems like certain things are lessened with the herbs and that makes it hard to tell if symptoms are real or just pains from the previous episodes. Ughh. Again still not official diagnosis, just a few + signs. Not ++ or +++ though so Infectious Disease doctor is testing the waters with the Doxy. Sure wish the Azith would be fully covered for the 30 days instead of 3 days worht every 23 days. Thankful for God's blessings in my life. Pray everyone here listens when He speaks. God bless you all.
Posts: 21 | From Phoenix, Arizona | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- kbaucher's last post was about two weeks ago. The ADD meds just might have kicked in. An attention span would be nice.
Kristy, hope it's going well for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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