posted
I don't know what is up. You know I worked for over 5 years in the Navy during the gulf war in hospitals as a corpsman, on ambulances for 5 years and triage too. I had another job but I would have to kill you if I told you about it (just kidding ). Triage is not hard...obviously someone bleeding comes before someone with a cold, etc. I will get back to this (even though my brain is full of fog). I have 3 lists of names of LLMD's that I am working with and also some that I search out on my own on the internet. My husband even tried to help by calling and he was treated worse than I. First off I am coming to understand that yes protect the lists of doctors, I saw under our skin, and agree with most of it all. Why when I call am I told that they have a wait list out to December, January, haven't seen patients in 7 years, told that I should understand I am lucky I am even on antibiotics and should be happy with that, oh we will call you back, oh we can get you in on friday and we don't take insurance but can you tell us your insurance anyway...oh we don't take insurance but we won't see patients that have your insurance even though you aren't using it and paying us cash, why don't you call these people (not on the list) from infectious disease, etc. This is what I heard all day long as I am sobbing and crying that I am afraid that time is critical that I am not on: 1. high enough doxy 2. long enough--20 days only 3. if i have a co-infection
Mind you that my lovely (and yes I agree I am lucky but please don't throw it in my face) that I had a rash and lucky that my blot test came back positive...but if not one of the LLMD doctors will treat a person when they are first in contact with the disease....as a person that saved many military lives during my 5 years in at the hospital and on an ambulance...it just makes my stomach sick... I feel like someone bleeding on the side of the road while others look and keep on driving..no one bothers to help. sad.
Posts: 16 | From Virginia | Registered: Sep 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Are you saying that you believe you should go to the front of the line and be seen immediately by these lyme doctors, pushing everyone else back who has called before you?
In order to be fair, the lyme docs take patients as they call. If people found out that a certain story ("I was just bitten 2 weeks ago, my meds from my PCP are about to run out, my PCP didn't give me a high enough dose, etc.") got them to the front of the line, don't you think many would start telling that story just to get in sooner? You have mothers who are desperately worried about their little ones, people suffering terribly, in horrendous pain, etc. These patients are not in front of medical personnel and so they cannot be judged as in a triage unit.
The doctors' staffs do not want to be the judge of which story deserves to go to the front or middle of the line.
So, the only way to be fair to all is to take people as they call.
For those who are just bitten, we suggest they go from walk-in clinic to walk-in clinic to get prescriptions for doxy. If you can get 2 prescriptions, then you can take them both at once and get a higher dose that way.
If you kept a picture of your rash, or if you still have it, you may be able to get a lot of prescriptions by showing it at different clinics.
Others in your same situation have bought doxy online and from veterinarians until they could get in with a lyme doc.
Instead of getting upset with the lyme doctors, get upset with the Infectious Diseases Society of America (IDSA) who has caused this situation to exist in the first place. Without them threatening all doctors in this country, you would find many doctors who would be willing to give you doxy for 30 or 60 days or even longer. But, with the IDSA breathing down their necks, they are denying you and others like you the high-dose doxy that you believe (and I believe) you need.
The lyme controversy is what has caused this situation, not the brave lyme doctors who are willing to help you.
Sometimes you can also find friends who have left over doxy from prior illnesses, and sometimes folks on this site also have doxy they will give to others, even though this is also "illegal" in this country.
If you want the name of a good lyme doc not far from you who may see you in 1 month, let me know.
I would not panic about having to wait a month or 6 weeks to see a lyme doctor. But, I would try to get more doxy. Even if it is low dose, it will help by keeping the lyme from multiplying. Higher doses actually kill the lyme.
I see from one of your posts that you called a lyme doctor who has one of the longest waiting lists in the country. They are not all like that. So, don't go by that experience.
The doc I am referring to also treats children, so you may want to private message me for the name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
If you get leftover doxy from someone, be sure to check the expiration date. Don't take it past that date. This may not be true of other meds, but this one can be dangerous if it is too old.
Posts: 8430 | From Not available | Registered: Oct 2000
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
You do have the option of treating yourself with herbs, salt/c, rife etc and other alternative protocols if you choose.
I did after I could no longer afford tx after 4 yrs of abx. Check out lymestrategies for salt/c and other alternative and integrative protocols. Take charge of your own health and you won't feel so helpless.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Hi - I suggest you check out Stephen Buhner's book, "Healing Lyme." He's got a list of herbs we can take for Lyme and co-infections. Many people can't even do antibiotics and are treating with the herbs. I've tried two so far and am impressed.
You could look at this time as a time to experiment. For example, with food-based anti-inflammatory supplements, like mangosteen juice, noni juice, grapeseed extract, curcumin, bromelain and papain - those are some examples. Just to see if you get a change in any of your symptoms.
Likewise, you could google your symptoms, and the infections you may know you have, along with alternative natural care for them and see what comes up, and try it. Antibiotics are helpful but not the only answer.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I do know one doc in North Carolina that does take newly infected patients on a priority basis for a slightly higher fee. Doc is currently moving into a new office so am not sure of the exact wait time.
Send me an email for the contact info.
Seibertneurolyme (at) yahoo.com
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Personally I don't see why all LLMD's do not keep a few slots open for newly infected patients as those are the ones who are easiest to treat.
Many specialists such as neurologists etc keep slots open for emergency patients -- although most require a referral from another doc to get in that way.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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quote:Originally posted by seibertneurolyme: Personally I don't see why all LLMD's do not keep a few slots open for newly infected patients as those are the ones who are easiest to treat.
- very true!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Everyone thank you for writing me back! I used to work in offices and did sick call besides the ambulance stuff and most docs did keep slots open for quick or emergency stuff. My am very lucky today in that having a doctor friend helped me get in to see another doctor, although not a LLMD (and he ain't LLMD friendly either so I will not put his name into a hat) he took an hour examining me and talking to me. He also checked up on my bloodwork with my primary doc and said "so many doctor offices cannot read the blot results and that is why so many are not diagnosed correctly with Lyme." I of course have never seen a result so I wouldn't know. He also said that all blood work for Lyme is awful and unreliable. My husband was there to keep my foggy brain in check thank goodness because when I started telling him my symptoms as I was reading from my little booklet I realized I had wrote the same symptoms down the same for each day. I am not sure what I was thinking because I can remember they didn't all happen at the same time. My best question I think I asked though was "What if I don't feel better at the end of the 20 days of Doxy...what do I do then?" Most docs assume as many patients obviously do when they start feeling better they go off of the antibiotics...which no way in hell am I doing. While we were sitting there my husband showed me a text that was from my friend doc that said she would give me all of the doxy I wanted and for as long as I wanted because it was a safe drug and she has had people on it for years for acne. THANK YOU!! So he did some more blood work since I was a very interesting case (he told me) to him and is having me return next week. I think I will ask my friend though for another month's worth of doxy though!
Posts: 16 | From Virginia | Registered: Sep 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Wow, wonderful to hear that you now have a continuing source of doxy! Praise God. I am so happy for you.
Now, you can focus on learning as much as you can about the doctors you are seriously considering, and picking the right doctor for you.
The doc is the key. Can't stress that enough. Many doctors treat lyme disease, but not many know how to get rid of it for a person.
If you want to give me a few names of docs you are thinking of seeing, I can tell you what I know about them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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