I think I posted in another section that I had the following reactive bands from my first test:
66 IGG 41 IGG 41 IGM 23 IGM The test said "suggests positive".
I then was referred to and tested by an ID dr, and that test was based on subclasses. He said the test was negative, and I didn't have to see him anymore. I don't know how to read those results, and I don't know why this negative overrules the first positive.
I have an appt with another dr on Monday that knows about Lyme. In the meantime, does anyone know the difference in these tests? Is one more sensitive than the other, or are they all just a bunch of bs?
I have been sick for 7 years. I have all the symptoms of Lyme. I felt worse the first week of abx, and the detox baths make me ache all over. Not sure if that means anything.
Posted by Razzle (Member # 30398) on :
The first test is a Lyme Western Blot. The bands are antibodies that are made for specific proteins that may be found on the Lyme bacteria.
The second test is a general immune system status test, and does not tell you about any one specific infection.
Thanks, Razzle. I just saw where you answered my post on the other Forum site. Do most people belong to both? Are there others?
Posted by Razzle (Member # 30398) on :
I don't know how many are on both...but I have seen at least a few...
Posted by Lymetoo (Member # 743) on :
- The doctor you are to see this coming Monday . . . I hope he/she is an ILADS educated lyme literate doctor. NOT just someone who "knows about lyme" because even that doctor who so wrongfully dismissed you would say that about himself.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posted by Keebler (Member # 12673) on :
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posted by Keebler (Member # 12673) on :
- Important book to get - and if the doctor you are to see on Monday does not know about this author and say positive things about it, they would not have an ILADS educated LLMD then.
Now, of course there are various thoughts and action plans amond LLMDs but this is all pretty basic ILADS information at this point in time. 16 points to consider at you make your way through all this:
Chapter One - gratis -
Posted by Keebler (Member # 12673) on :
- "detox baths" can often be too hot for too long, or too strong. Be gentle with all your liver support methods. Some people can't even "do" baths, they can be so taxing - even if warm and not for long. Just so much effort.
If you experience "payback" for any activity, that's a sign it's too much. Scale back.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by Ames777 (Member # 43190) on :
Thanks, everyone, for the info. Hopefully I will find something out on Monday.
Posted by Ames777 (Member # 43190) on :
I am still feeling really bad. My bossy aches all over and my bones feel like they want to break. Minimum brain functioning.
I read the links evereyone gave me. i thought I was doing the detox baths correctly. Just warm water, one bottle of hydrogen peroxide and 4 cups of Epsom Salts. I soaked 20 min. Maybe not enough water? The tub too small or I am too big. :-)
I also stopped taking the 200mg of minocycline yesterday morning. I was only given two weeks of it. Could this make me feel so bad today?
I drink lots of water and have cut out sugars and lots of artificials from diet. Don't know what else to do. Very close to taking a pain pill, though that may not be good for me either.
Posted by GretaM (Member # 40917) on :
If you are seeing an ILADS educated doctor, Monday will be the best appointment of your life.
You will be treated in a fair, and considerate way, and your symptoms will be considered together.
Avoid Tylenol, acetaminophen if the pain gets really bad.
Hang in there.
Posted by Lymetoo (Member # 743) on :
Don't name names, but did you find an LLMD in GA? I don't think there are any, but maybe you found one???
Was he/she recommended by someone here or by a support group?
(hoping)
Posted by Keebler (Member # 12673) on :
- It's very common to feel worse when taking antibiotics for those who have lyme. It's called a "herxheimer reaction."
Liver support should help. Still, it can be a rough and rocky road. Just take care of yourself. Good luck.
Personally, I would not take a bath the hydrogen peroxide as it can be very irritating to the skin. Still, others seem to manage that. I just surely could not.
A full quart (4 cups) of Epson Salts may be too much all at once. You might try half that the next time. It can also be irritating to skin if too strong so be mindful of that.
Hope your appointment on Monday is set with an ILADS LL doctor and that it goes well. -
Posted by Ames777 (Member # 43190) on :
Not an LLMD in GA, Lymetoo, but the closest I could find to a dr. that treats Lyme in this area. She was recommended by someone on one of the Forums. I'm just gonna pay out of pocket for first appt to see if she is gonna help me.
I did email my state's Lyme association and am waiting to hear if they have anyone they recommend. I will share whatever I learn.
Posted by Lymetoo (Member # 743) on :
Keeping my fingers crossed for you. I pray it is not an infectious disease doctor.
Posted by Keebler (Member # 12673) on :
- What board? Just curious. There is at least one "lyme" organization that does not believe in chronic lyme. They steered me way off track when I started out.
Still, even not every "lyme literate" board is full of the best intentioned posters. Most are but in this anonymous world, it's important to double, triple check and beyond when it comes to doctor selection.
Hope your referral is good one, of course.
Hopefully, those on this board who live close to you might PM you and offer what they might on the specific name.
And I hope you hear back from the inquiry you placed and you may still be able to find out more this weekend.
Monday appointments can be tricky to cancel. But, until / unless you find out more, you may just need to keep it.
However, if I were to find out they would be IDSA connected I would consider cancelling . . . but still would want to try to find out more. Once in a while, out of sheer luck, there may be an IDSA doctor who is not ignorant about lyme.
It is VERY rare, however, and you can't take the chance. Researching the doctor beforehand is essential.
1. This weekend, though, try to call all lyme support leaders within a several hundred mile radius to that doctor. See if you can find out directly if anyone in the groups have knowledge of this doctor.
Call at times that are not "family" times, of course, in case some leaders put out their home phone numbers. Often, calls are returned or made on weekends.
2. Cross search the web with this doctor's name. Find out if they have authored or coauthored any articles or books. If you can access those, or abstracts, reviews, that will help
Cross search not at regular Google but at Google ADVANCED SEARCH:
name (keep this as a full search term always) -
First, just their name - and see what pops up. You can learn a lot about a doctor's mindset IF you can get past the web trash and "rate a doctor" sites (which are not always as good as we might hope . . . still, do look to see if they have any reviews and take those with a grain of salt).
name, IDSA
name, ILADS
name, affiliations
name, lyme
name, borrelia
Also search at PubMed (you can find that through a Google search). -
Posted by Ames777 (Member # 43190) on :
Thanks, Keebler, for the advice! This is something I will definitely do right now.
The organization is http://georgialymedisease.org/ They seem legit. The co-founders have Lyme, and they have a lot of articles and personal stories on their site.
I'm checking them for dr referrals and any support groups in the area. Anything that can help learn more in my area.
Posted by Keebler (Member # 12673) on :
- If that is the board where you got the name, you can relax and take the next step.
It also seems that you would have gotten someone on the board to give you the name, not just an anonymous poster on a discussion site (who may or may not be "real" -- most are, it's just that we all need to be aware that not every poster on the web is "real" -- that's why multiple sources helps)
Yes, your state lyme group certainly appears to be very much ILADS minded - what you need. They look very good, judging by a quick look as the resource links they post.
If someone from there suggested a doctor, I'd say that is a pretty good bet.
Good luck to you. -
[ 02-08-2014, 09:34 PM: Message edited by: Keebler ]
Posted by nefferdun (Member # 20157) on :
How did it go Ames?
Posted by Ames777 (Member # 43190) on :
Thanks for asking.
I saw the new dr, and they said definitely Lyme. This isn't an LLMD, but they at least believe Lyme is possible in Georgia and offer treatment.
I go next week to be tested for co-infections and start the iv abx. She is even on my insurance, but it is taking an act of congress to get the necessary referrals to see her. I just paid out of pocket for first visit.
I finally feel like someone listened to me. I'm gonna give it a week, and if I still like them, I will offer the name to the other people in the GA area.
She said I will be on abx at least 4-6 weeks, and then we will take it from there. Maybe more if co-infections exist. She seemed very knowledgable.
Not sure about their stance on chronic Lyme, but my assumption is they just deal with immediate treatment. But This is way better than nothing right now. :-)