posted
First let me say my husband has been VERY supportive. He has been my rock.
However, he thinks the doctor I have can help me. Which maybe he can, but he is NOT an llmd. He is a lot more knowledgable than many gp's, but I need someone that sees this all the time. Someone who has helped people get OVER this! I want to give it a good fight.
I'm going to show him this thread. Please tell him why I have to see a llmd, I can't get through to him. He thinks anything further than 3 hours is too far to drive.
I am really really wanting to see Dr. C in Missouri. That is 9+ hours away. But I feel desperate... I want to be sure to get any co-infections. That is what I'm really worried about. My heart has been acting fine for the last couple weeks. Friday I started my abx (mino) and all day today I have been having heart flutters. I HATE them. Maybe it's just a herx.. but I'm not sure. I need to meet with someone who knows A LOT. I'm scared.
I have a question too. Does Dr. C take insurance? Or is it all out of pocket?
[ 30. June 2007, 09:18 PM: Message edited by: LaurenTurner ]
Posts: 248 | From Tejas | Registered: Jun 2007
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My husband wasn't convinced I should see an LLMD until he went with me to the appt. with the LLMD. That totally convinced him. He saw the thoroughness, the knowledge and compassion of the dr. You know wht they say, "seeing is believing."
If your husband is reading this, I would ask him to give the LLMD a chance and compare him to the GP. Ask both the LLMD & GP all the questions you can think of.
One thing that is very important is experience in treating Lyme patients. LLMD's have much more knowledge and have seen a lot of patterns in their patient populations that other drs. just don't see.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Chronic Lyme is a very complicated disease. There are various co-existing conditions that need to be treated.
One is co-infections. I have babesia. I tested negative for it, but it's clear I have it from symptoms (night sweats, heart palpitations, air hunger). I don't think a regular doctor would treat me in the absence of a positive test. Tests only test for 3 strains of it, and there are over 30.
Heavy metals is another. Lymies seem prone to heavy metal toxicity. I don't know that any studies have been done to show why, but my guess is that our immune systems are taxed and we don't detox things as we should. I am currently on a chelating program to get rid of mercury and lead.
I also got diagnosd with an overgrowth of bacteria in my GI tract. I have an overgrowth of the bad kind, and NONE of a few strains of the beneficial kinds. I went to a GI for all my issues, and he NEVER tested me for this, yet my LLMD did. My stomach feels better than it has in years since I started treatment a few days ago. I would think a GI should have been able to find such an obvious problem.
You have to do things to build the immune system at the same time you are going through treatment. You can get rid of much of the bacteria, but your immune system has to be able to take care of the rest. I'm on twice as many supplements as I am on medicine ... supplements specifically designed to help me detox and build my immune system.
You have to work to prevent candida overgrowth by taking probiotics and eating an anti-candida diet.
The borrelia has three forms -- spirochete, cell-wall deficient, and cyst. It can readily change from one form to another. It can hide in coinfections. I don't think many GP's will be trained in the intricacies of the disease.
Treating Lyme is very involved. You need a specialist. You wouldn't go to your GP to treat cancer, you'd go to an oncologist. You don't go to a dentist for braces, you go to an orthodontist. You don't go to a GP for GI problems, you get referred to a GI doc ... also ob/gyn, dermatologist, podiatrist, etc. This is more complicated than strep throat ... you need a specialist who does this every day.
Plus, I think it's rather unlikely that a GP will be willing to treat you until it's completely irradicated. Most are not comfortable with long term abx ... probably because the docs who are willing to stick their necks out for us to get well are constantly persecuted.
I fly from Ohio to NY to see my LLMD. It's worth every penny. It's so reassuring to have a doctor look at you and your test results then say, "Boy, you don't feel good, do you?" That after my GP diagnosed me with somatization disorder even AFTER my positive Western Blot.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear Mr. Turner,
Unfortunately, there are very few doctors that understand and have experience in tick-borne diseases (TBDs). The consequences and proper treatment of infection with borrelia, babeosis, bartonella, and other tick-borne diseases are evidently not taught in medical school.
The doctors that we call llmds -- lyme literate medical doctors -- have the most clinical experience in treating TBD's, they have the most knowledge in these complex diseases, and they have the best success in treating patients. These can be very disabling diseases, but when properly treated, patients can regain their health. However, most practitioners just do not know enough about co-infections of lyme, for example, to give proper treatment.
Yes, I realize that sounds crazy in the USA in 2007 -- but the ignorance of most physicians about TBD's is truly shocking. As incidence rates increase, perhaps this will change in the next ten years.
Meantime, three hours is not too long a car trip for Lauren's health! Many lyme patients travel much further.
Personally, I became quite disabled with TBD's last year, started treatment in July 2006, and my health improved greatly only after I started to see an expert (llmd) in the field.
I hope this helps and feel free to PM me with any questions.
Best, Ella
Posts: 2557 | From home | Registered: Aug 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The clock is ticking on lyme and co-infections. The faster you get the correct treatment, the better chance you have of beating it and not having a relapse eventually.
This is a very serious illness and tricky. Would you like to take the chance of getting a LOT sicker somewhere down the road because you didn't get appropriate treatment? The longer one has these infections the harder they are to get rid of. AND they can re-surface months to years later AND they can be deadly for some people, or if you don't die, you wish you were dead. Not joking.
You need someone who knows what they are doing if you want to get well and remain well. Stick around awhile, you will read many stories of people who come here very sick after not getting appropriate treatment.
Please take this decision very seriously and realize what is at stake.
Oh, BTW - I'm too sick to go alone so my husband and I get on a plane every 4 months and fly to another State AND we pay for it all, including doctors fees and a huge deductible for medicine out of our own pocket. It's that important.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Vanilla
Unregistered
posted
Tell your husband you can not put a price on good health.
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posted
If you had a high risk pregancy, you wouldn't go to just any OB/GYN. If you needed a root canal...you wouldn't go to a General Dentist. If you had Cancer you wouldn't go to your GP. You have Lyme Disease, you need a specialist. Why on earth wouldn't that specialist be an LLMD?
After spending precious years taking my daughter to Rheumatologists, Immunologists, Hematologists and several other "OLOGISTS" her GP finally tesyed her for Lyme disease. When the WB came out positive, he admitted he had NO CLUE and told me to find an ID doc. After several wasted trips to ID docs who ignored the idea of coinfections and neglegted the positive WB because she had had oral abx 8 months earlier...I finally got scared, relaized that mainstream medicine lacked the knowledge and, frankly, the concern needed to treat Lyme Disease. She now sees an LLMD and is starting to feel more normal for the first time in 11 years..
I beg you...dont waste your time with IDSA doctors or a GP who isn't an expert...If you want to get well, go to the LLMD.
Elle
Posts: 217 | From New Jersey | Registered: Apr 2007
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I was bitten 7 years a go and even though I was misdiagnosed at the beginnning, I got, compared to others in this forum, a lyme diagnosis and treatment 2 months after the bite...I thought I was lucky since I was diagnosed...somehow "�arly"
Well that was the beginning....I was placed on long term abx....but not the right ones....co-infections not addressed..etc....!!!
Now after years battling the disease I can tell you an LLMD is so important if yo really want to see significant improvement in a short period of time.
Now I have to travel from FL to NY for treatment ......should have known better 7 years a go.....it so well worth it.
I basicly wasted my first few years of treatment.
Only a good LLMD knows how to hit the bugs from different angles.....
My husband at the beginning thought I overreacted and that lyme once diagnosed is treatable as any other disease; WRONG.
Thanks God my daughters bitten too, were taken right away to an LLMD in New Haven, CT....you see, we didn't have enough money so I decided to look for treatment down here in Fl with a "knowledgeable" MD....but not LLMD.
Aftermath: both daughters done with treatment after one year on abx and me more than five years....
And yes my marriage have survived....was difficult and is difficult...but here we are.
Now I'm a lyme activist and I promised, the way I was helped at the beginning, to help others in the future.
Posts: 983 | From The sky | Registered: Feb 2005
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bettyg
Unregistered
posted
dr. c is cash only; no insurance.
you should have received my newbie package of links, advise, symptoms, tests, etc. look in there for my thorough tests 4-06; and otcome of all my blood tests for this/that.
that's why you need a real LLMD vs. plain dr. i had 40-50 mds/specialists who never tested me for lyme; i demanded it.
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tailz
Unregistered
posted
I didn't have time to read this whole thread, but Lyme Disease isn't something most GPs are all too familiar with. Most are too skeptical to even believe a positive result, let alone a negative.
But if anybody is interested in the reason why we Lymies seem to have problems with heavy metals, go to the library and read 'Cross Currents'. This is also why spirochetes are able to cross the blood-brain barrier in the first place.
Basically, we were on a downward spiral already with cordless phones, etc... And then cell phones and wireless put us over the edge.
Here's an article on electromagnetic pollution - excellent one - very much like the book, but the book includes studies - otherwise, you will just think I'm making this up.
I'm editing this - hope it works. If not google 'The biggest biological experiment ever'.
In the book, the author explains that tests were done to check for cellular changes immediately following exposure to the 60 hz frequency coming into our homes - and true - everything checked out okay, BUT...
Had they waited like 3 days after exposure (don't quote me on the days here - I forget the length of time), serious changes were observed. I recommend this book. The only book greater than this (in my opinion) is the Bible. No joke here.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Lauren-
This is a post I wrote to Pinster 56 about 2 years ago- april 05
He thought he was to cool to have lyme and thought he could just Blow It Off- I have no clue what ever happened to him-
Folks here wrote him 3 pages of posts trying to convence him to get help -
You should look up these posts and show them to your Hubby--
If these posts dont convence him I dont think anything will -
Below is what I wrote to Pinster-
Pinster 56 --#7201
Looks like you are going to be stupid.
So Pinster-- do everything you ever wanted to do in your life--in the next six months while you still can.
Get a good comfortable bed-- you are going to be there alot.
Take some pictures to show how you used to be.
Run around the block and jump up and down as many times as you can-- just to see how it feels for the last time.
Spin around till you get dizzy- it will be good practice for whats to come.
You are going to have to learn alot of medical terms--so you might as well start now while you can still remember.
Eat all the food you Really like- dont worry about your weight- this wont last long.
You are going to spend the rest of your life as a drug addict - just not the fun kind - so get on good terms with your doc and pharmacy. Closer the better-
Learn how to use spell check and get a lot of sticky notes-make some real easy type of file system so thing dont get lost ( I pin everything to the wall)
Do some simple math on paper-and save it- to prove you used to be able to do it. Hay-there you go- this could be the first thing you pin to the wall.
Clean your home for the last time- Do a good job its going to have to last a while.
Bookmark Lymenet.org -you will be comming here alot.
Also get a good comfortable chair - for when you not in bed.
Take up some hobby that you can do from the comfortable chair. Paint by numbers is perty good except for all numbers and lines. Get a big paint brush-it wont matter.
Go to work and be productive-- build up as much sick leave as you can- it will come in handy.
Get hooked up with Meals on Wheels-- They deliver .Time is a waisten.
Talk to your neigbors - so they know who that was standing out in front of your house yesterday and wont call the cops.
This will save you from getting out of bed to find some ID to prove Who you are- Did you pin it to the wall?
Go to a bar--have some fun- Get Lucky if you can. Have Safe Sex -- You dont want to give them anything.
Write down the names of the friends you Used to have--Pin it to wall-- Look your doin good -- you already have 3 things pinned to the wall.
Get to know your kids-- they wont be around much from now on. You know how kids are.
Take a vacation- your not going to be going very far from home - perty soon.
--Make a list of the 5 stupidest things you ever did--Leave room at the top of the page for not taking enough ABX for long enough when the Lyme disease was easier to Kill.
There wont be that many more stupid things you have done because you wont be able to do Many More Things. -- Pin the list to wall. --Jay--
-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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My husband wasn't convinced I should see an LLMD until he went with me to the appt. with the LLMD. That totally convinced him. He saw the thoroughness, the knowledge and compassion of the dr. You know wht they say, "seeing is believing."
If your husband is reading this, I would ask him to give the LLMD a chance and compare him to the GP. Ask both the LLMD & GP all the questions you can think of.
One thing that is very important is experience in treating Lyme patients. LLMD's have much more knowledge and have seen a lot of patterns in their patient populations that other drs. just don't see.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
Vanilla
Unregistered
posted
There is no reason not to go see a LLMD even if you have to rob a bank to go see one. I could not afford to see one for years and I wish I had been seen sooner and of course more then one GP told me I did not have lyme. One told me after looking at my Elisa results that it looks like you had it in the past but you do not have it now this while I was clearly having severe neuro symptoms and not sleeping or eating well.
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posted
Because I am going to be 29 this month. And for the past 10 years everyone has looked at me like I'm a hypochondriac! I have two toddlers that are the only thing keeping me alive at times. THey are my world. Thank GOD for them! OTherwise, I would have given up by now.
I believe I have been infected for 20 years. But things just started coming out in the past 10. And in the past 7, I have gone down hill fast. My 20's have been miserable.
I don't know enough about this disease to give you facts. I can just tell you, you DO NOT want to feel like I do. Or so many of the people here do.
Posts: 151 | From ohio | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Lauren,
If you want to go to this doctor just go. You shouldn't need the approval or permission of your husband.
Tell him your going and thats it. I just wouldnt let my hubby ( and yes we have been together for 11 years) dictates my health care -sorry just my opinion
Melissa
Posts: 3905 | From USA | Registered: May 2007
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If you want to go to this doctor just go. You shouldn't need the approval or permission of your husband.
Tell him your going and thats it. I just wouldnt let my hubby ( and yes we have been together for 11 years) dictates my health care -sorry just my opinion
Melissa
Melissa, the only thing is, I don't think I could drive myself. I don't mean to make my husband sound bad.. he is very concerned and caring. I finally got through to him why it was necessary to see an LLMD. He understands now. So if I can find a good llmd (still doing some research) we will go to one soon!!! So excited.
Posts: 248 | From Tejas | Registered: Jun 2007
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bettyg
Unregistered
posted
ask a close family member/friend to DRIVE you; it's another set of ears to hear what llmd has to say ok!
make the appt. NOW; many have 1-5 month waiting periods!!
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Lauren I hope I did not offend you. It was not my intention. I undertand about the driving thing.
I am glad you got hiim to understand. I hope you get an appt soon~ Melissa
Posts: 3905 | From USA | Registered: May 2007
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![[Eek!]](eek.gif)
But I feel desperate... I want to be sure to get any co-infections. That is what I'm really worried about. My heart has been acting fine for the last couple weeks. Friday I started my abx (mino) and all day today I have been having heart flutters. I HATE them. Maybe it's just a herx.. but I'm not sure. I need to meet with someone who knows A LOT. I'm scared. ![[Frown]](frown.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
So if I can find a good llmd (still doing some research) we will go to one soon!!! So excited.
![[Wink]](wink.gif)
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