posted
I am very confused - I am researching and planning on going to a LLMD but the wait is long to get in. All my friends say I am better going to a general infectious doc? I am not sure if it will be a waste of time??
-------------------- KSN Posts: 34 | From Indianapolis | Registered: Feb 2012
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
don't listen to people who don't have lyme.
NO< NO< NO....infec doctors. read the stories....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
I would not go to an infectious disease doctor. The one I saw told me lyme was not endemic to my area which I know is not true. I know many people who have gotten lyme in NC.
The ID doc made me feel like I was crazy and in response to my positive rocky mountain fever test said "would either get better or die." My problems could not be related to tick borne infections.
Who knows, maybe you'll get lucky but I have seen nothing but horror stories from people who have seen infectious disease docs.
It was such a relief to see my LLMD, who validated my symptoms and finally understood what was happening with me.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
posted
To repeat what everyone else has said, definitely LLMD. I would stay away from any infectious disease doctor.
-------------------- Lyme918 Posts: 188 | From Massachusetts | Registered: Dec 2010
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Well it depends on what you are sick with. I saw an LLMD who I deeply respect. He was great for tick borne diseases, but he did not wish to try to treat the various viruses that I'm dealing with too.
So, I was fortunate enough to find two ID doctors who are treating both my chronic viral and chronic bacterial infections.
There are some great ID doctors out there, but like any doctor you have to look hard to find the good ones.
And this particular ID doctor is working extremely hard to figure out what people like you and I are sick with: http://chronicfatigue.stanford.edu/ He deserves all the praise, money and support he can get.
So, in my case, an LLMD doctor helped, but I needed an ID doctor to make the most progress.
Find a doctor that will treat all of your problems, not just your tick borne ones. (This may require more than one doctor.) I see a PCP, 2 ID doctors, a cardiologist, an ophthalmalogist and a GYN on a regular basis.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Timaca makes an excellent point. I had thought another thread of hers was in the WHY ILADS thread above but it is not. It is in this one: ---------------
Diagnosing Lyme Disease (&/or whatever else is going on)
Includes a symptom check-list; articles; consideration of differential diagnoses.
Scroll way down to TIMACA's thread on "TESTS TO CONSIDER" as her collection is very important for what else to consider, such as Cpn, HHV-6, etc.
Many LLMDs do consider other tick-borne infection and other stealth infections & parasites, heavy metals, etc.
But not ALL do so. Be sure to ask up front the extent of their detective "services" so to speak. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Well, if you have Lyme & Co .. forget the IDSA inf. disease doctors. They will only treat you for 30 days, if you're LUCKY.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Since you have to wait to get in to the llmd, maybe you should try to get the abx, at least in the short run, any way you can.
If they refuse to give more than a few weeks, then so be it. At least you've bought yourself some time until you can see the llmd.
Sometimes being assertive is good, or appeal to their egos (if he has a big one - most do), maybe ask him to humor you and give an extra few weeks. Whatever works.
If the ID won't help, keep asking; maybe a PCP who is open-minded will give you enough to tide you over.
I don't like ID mds either and also had a negative experience the one time I took my son to see one. He did test him for Epstein-Barr, but discounted the lyme.
Best of luck.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you decide to go to an ID doc, you HAVE to do your homework. You can't go to just any one.
You have to find out if they even "believe" in any of the other things that could be going on with - or instead of - lyme.
You have to know their thoughts about lyme.
Most are NOT open at all to any of this. As Timaca says, there are a few out there who are.
But, I guarantee you that if you just go to any regular ID doctor, you will be in for a very rude awakening; you could hurt your chances for being taken seriously again by any doctor in your insurance plan.
Do some exploration. We have to research each doctor FIRST as it your life depends upon their knowledge. Because it does.
Most are sorely lacking.
The "Diagnosing" thread will offer some clues on how to find (first) ILADS-educated doctor but also, then (since you have to wait a bit for the LLMD), separately, those few ID doctors who are at the top of their field.
[Apology, as I just couldn't phrase that last sentence clearly. Hope you get it.]
You'd probably look at the Cpn, Mycoplasma, or HHV-6 sites, etc. and see what doctors may be on their lists.
Go to the link Timaca posted above for CFS researcher, Dr. Montoya. Call his office has suggestions in your area. Etc.
You'd talk to everyone in the area lyme, CFS, Fibromyalgia, MS and ALS support groups. Find out who is the best detective.
NEVER assume any doctor will have the credentials you need. You have to research them first. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
Run from ID docs.If you want to have your life back go only to llmd.
Read buhners book and start slowly in herbs and in some parasites cleansing while waiting to see an llmd.
read as much as you can to get informed and ask questions here.
The doctors destroyed my life with their assumtion and diagnoses.No one mentioned lyme .Once I found about I never saw a ID doc again .
I went than to my pcp or lab just for the lab work nothing else.
wasted 15 years wandering to figure out what was going on .
Posts: 1379 | From disable | Registered: Aug 2011
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Keebler is right, as usual, about doing our homework and the insurance problem. So many things to consider...
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
My experience: They might treat with 30 days of ABX and for sure they treated me like I was crazy.
Everyone has offered some important points to consider.
Good luck!
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi ksnew:
The problem with going to an IDSA member is at best they will treat you with a mono thearpy drug for 1 and maybe 4 months. At worst they will treat you as if you are crazy.
It's all due to the controversy. We wasted 4 months with a pediatric MD who is advertised as a Lyme expert.
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
He is a saint and I show this to help illustrate how MD�s have been prosecuted so normal MD�s shy away from doing anything but following the flawed IDSA guidelines.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
Go to the link Timaca posted above for CFS researcher, Dr. Montoya. Call his office has suggestions in your area. Etc.
You'd talk to everyone in the area lyme, CFS, Fibromyalgia, MS and ALS support groups. Find out who is the best detective.
-
- In my humble opinion.. CFS IS Lyme... same with FM, ALS, or MS. I wouldn't waste time on those. GET TO THE SOURCE OF THE PROBLEM.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm glad TuTu forces a clarification because it's extremely important. I just can't be clear enough about this.
So, adding to TuTu's post:
Yes, CFS is very often lyme. Same with any of those other diagnoses (dx) I posted. But they can be other stealth infections, too.
IF you have someone in one of those groups reporting that they have a doctor treating them for mycoplasma or Cpn (MS is often Cpn or Lyme & Cpn - treatments are similar), etc. then you'd have a lead.
Of course, you'd NOT want to just go to the doctors that most of them usually go to - you do not need those other umbrella diagnoses.
You'd want the DETECTIVE doctors.
Ask who in those groups may be looking outside of the typical treatment for that dx.
Ask who has left the group when they got another diagnosis. What was it? Who did they go to?
Also, if you do that, I would not cancel the LLMD appointment. This is to help bridge the gap in case you have other things going on.
My first stop would be the LLMD - but you say that's off in the distance.
You have to do something now. Buhner's book is a great place to begin but - if you are intent on finding some kind of doctor while you wait for a LLMD - it has to be with very specific thought and lots of homework.
Be sure to get on the cancellation list for the LLMD. Be sure to call back every week to see if someone might have just cancelled, even if you are on the list. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You are off of all MSG & aspartame, right? Google for all the names they hide behind. ALso best to avoid all processed foods and "natural flavors" - this will help weed out of you are having a toxicity reaction.
Did you EVER have a bulls eye rash - or any other rash after a tick-bite?
Not everyone does but if you did, that's a clear lead. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Another one jumping on the band wagon to tell you that the wait for the LLMD is worth it. Sadly, the Infectious Disease Doctors aren't trained well in Lyme Disease or the co-infections.
Good luck to you!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
I go to a really good Infectious disease doctor. He is up on all the Lyme and co-infection treatments. He also treats CFS and other viruses.
The last study I saw said that CFS and Lyme we to different disesases. The proteins from a spinal tap were different in each illness.
I think you'd have to look for a long time to find an Infectious disease doctor who treats lyme though.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
posted
I think knowing that you are in charge of your recovery is important. You make the decisions based on the doctors diagnosis and experience.
We went to 7 doctors for my son until we found an LLMD 4 hours away. He was started on treatment and has started to turn the corner.
My son's therapist said if you think it is lymet there is a great IDSA doc just north of us. The office staff was so difficult to deal with and his rates were so high, we took Lymetoo's lead and drove to an LLMD in another state.
The LLMD knows and understands the symptoms. My son got tested for co-infections and we see him about every three months now.
After about 8 years I finally started treatment and begun to improve about 3 months ago.
By far this 4 hour drive was the shortest distance to recovery for us.
If you can get ABX until you see the LLMD then it may be the right thing to do as long as you get an LLMD.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I went through 7,yes 7 ID doctor's ., everything from latent Tb to you're fat 53 and pi--ed cause you paid for three Invitro's.
Oh, and 1 approved over 6 steroid shots in 4 -5 month's...
Totally made me so much worse after 4 years of bad.
Unless they really know Lyme ,stay away.....
not sure about the virus stuff...Mine never got that figured out either
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
lymeboy
Unregistered
posted
DO NOT SEE an infectious disease doc. a competent LLMD will be worth the wait and money
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic