I have been posting on the CFS board of immunesupport.com for over two years now, I have been sick for 3 years and have had a running diagnosis of CFS for over two years. After every test in the book as many have had, I recently about a month ago got a new doctor, the only LLMD to come up on a google search for Arizona. His name is Dr. S, at first I was hesitant to see him from some license infringements he had in the past, but he has the only LLMD that showed up so I really had no choice.
Anyway, I finally had the Igenex test ran, I didn't think I had Lyme disease but it was a possibility of course since its symptoms mimic CFS so closely. I just recently turned 21 years old, and pretty much was set on just doing what I could to handle CFS, but it turns out I have full blown Lyme according to the Igenex test. I'm going to spend some time reading the many posts on this board to try and find out as much as I can about antibiotics and treatments.
My doctors first approach of course was supplements, Samento bark extract, as well as Sweet Wormwood extract. Also an immune boosting spray. I have tons of supplements and this just adds to them. He said in two weeks we would talk about which antibiotic approach to take. I would like to hear the most common one being used if there is one on the board.
So according to my doctor i was positive all over the place for what is required as a diagnosis for Lyme. I would like to hear your guys opinion on the results.
I am feeling a little overwhelmed I don't really know what to think, my doctor wasn't assertive as I was hoping on what the plans were, he just said we will see you in two weeks and discuss an approach. I of course am going to do tons of research and hope to find a lot of info on this board. As far as what antibiotics people have been taking, for how long and if they have had any success.
I still don't know what to think really, it feels good to see these positive results and bad at the same time. It feels good to know I have something to attempt to treat, but at the same time I guess im lacking any confidence in getting better.
Anyway, appreciate those who read and give me some input, I have learned tons from reading the CFS board for years and hope to be posting on this board quite often. Thanks again, this post is also on the immunesupport.com Lyme board.
Trevor.
Edited doctor name. Lou B
[ 16. May 2008, 03:06 AM: Message edited by: Lou B ]
Posts: 59 | From Arizona | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there..
Quick note...
Before your head is bitten off by the devil himself....
Please immediately edit this post and remove the doctors name. That is a big NO-No here.
I know you didn't do it on purpose.. but it is very important. Just click the little icon thing that looks like a paper and pencil right above your post and edit out the name and town...
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Soooooooooo sorry to welcome you like that.. but once you've learned Lyme you will 100 percent understand why that rule is here.
So WELCOME!
Normally folks here are very wonderful... and VERY kind and smart too. Of course I look like the bad guy by fussing at you when you've hardly had a chance to put your nose to the grind stone.. again.. so sorry!!!
Anyhow..
Looks like you have Lyme! Many here have jumped for joy when they have finally been told what has caused their symptoms. But the joy doesn't last a long while.. as you've noted. But it is some comfort knowing what you are dealing with.. and because you WANT to learn.. this IS the place to be.
There is so much to learn too...
May I suggest starting with the link posted above in the Medical Section that is by Treepatrol? He has done a grand job of helping folks here for years.
If BettyG sees your post you will get a handful of info too from her too... from what I've been told.
It appears your doctor is accepting of alternative things... which is nice.
I can't comment on the items you mentioned... but I am happy to hear he is going to be setting you up with an antibiotic protocol soon. Good news there!
Two things you will need to remember... if I may share them now.
1. If you want a quick fix.. there is none. Sorry! Every day will seem longer and longer and like you may not be getting better... so do know that can happen... and be prepared
But when you do start getting better... it will be nice.
2. There is NO universal cure for Lyme disease. Each person responds differently to meds and supplements. What is good for the goose may not be good for the gander.
Others will be along to welcome you soon. in the meantime... glad you have some answers... and welcome!
thanks for posting your results and going down with them.
be sure to read and print off dr. c's explanation of western blot igm/igg... After printing, please circle the positives AND IND ones! his notes tell you what you protein band stands for ok!
i sent you a private message also asking you if you want my newbie package of INFO GALORE; so spend your time looking at TREEPATROL'S NEWBIE ARCHIVE IN MEDICAL, over 1000 links there.
my info now has table of contents except for SSDI, disability insurance info, since i'm 70% done indexing everything to date!
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posted
pm sent Posts: 370 | From NJ | Registered: Dec 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It looks like Lyme. CFS symptoms are very common in Lyme Disease.
There is a witch hunt within the medical community for those who treat Lyme Disease, so most of the best LLMD's have had to defend their medical licenses. Don't let that scare you away from a good doctor.
The IDSA's panel that came up with the so called standard treatment of Lyme was just determined by the CT attorney general to have been biased. Unfortunately, the docs who treat differently than these biased guidelines get scrutinized by the medical field.
Lyme is a resistant bacteria, so combinations of many abx are used in it's treatment. It's also generally treated for extended periods of time.
Good luck! You've come to the right place, keep reading.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I tend to have a different opinion from many people on this board, based on personal experience.
I would not jump at a lyme diagnosis with those lab results. I'm not all that familiar with IFA test for lyme, but your WBs have very few bands that are important for lyme....especially on the IgG.
I would get tested for a bunch of other things first...HHV-6, EBV, Cpn to name a few. Then decide what looks most likely.
I live in AZ...it looks like you may too. Feel free to PM me here at Lymenet, and we can talk on the phone if you wish.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I don't agree with Timaca and dislike how he/she constantly tells people not to get their hopes up that it's lyme, etc. People can have ONE band positive and have lyme.
Timaca said: "but your WBs have very few bands that are important for lyme....especially on the IgG." It doesn't matter if IgM or IgG is positive!?
I mean, okay, MAYBE it's not lyme and it's good to rule everything else out, but I highly doubt it in this situation considering bands 58 and 66 alone are "Species-dependant but specific marker[s] for Borrelia infections". That, and you are IgeneX positive which, to me, is enough to highly suspect lyme.
Nothing else is really going to cross-react with all those bands.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I agree that it doesn't really matter whether it's IgG or IgM... but with LYME, the IgG indicates past infection... so it's not such a big deal if most of your bands are in the IgM.
A positive IgM would indicate chronic Lyme according to Dr C of MO.
Here is what he says about the bands:
"Think of kilodaltons like pounds, ounces or kilograms. The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
I'm not sure why he excluded band 41. Might be an oversight.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Welcome Trevor!
I too had been initially given a diagnosis of CFS.
I personally think that the CFS diagnosis is crap.
It is the doctors way of saying, "Sorry, nothing I can do for you" instead of digging deeper to find the cause of your chronic fatigue.
Many, many times when a doctor does dig deep, Lyme disease is at the root of the problem.
I also have to disagree with Timaka. You may in fact have other things going on (ie.other infections,viruses)...
You don't know yet, because you haven't been tested. What you do have for sure though is Lyme - you have the results to prove it.
Anyways, you've found the right place. This is a very kind, compassionate group and we're all here for you.
Keep us posted and good luck!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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adamm
Unregistered
posted
Well, were you a dog, that test would be considered positive by
posted
So what would a purely positive IgG western Blot indicate??? That it is a PAST infection not current?
I think the western blot testing is confusing and even Dr C's explaination is confusing to me.
I wish I had good advice to give you Trevor, but I am also new to this and trying to figure out my results as well!!
I wish you the best!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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IF IT LOOKS LIKE A DUCK TALKS LIKE A DUCK QUACKS LIKE A DUCK
ITS A DUCK!
Your symptoms are in line. Your WB is in line.
I remember when I got my WB IgM was positive, not CDC positive either. I hit 33 out of 38 of the symptoms list - kind of a standard list that you will see.
I had dx of CFS, Fibro, PTSD - suspected but ruled out MS, Lupus and tons and tons of others.
I jumped for joy after 8 1/2 yrs to finally know what it was and then I researched, found this site, which has been a saving grace, and lost my joy rather quickly.
There is no easy, quick fix, that is for sure. But at the same time as you are doing your research, please take some time periodically
and visit the SUCCESS STORIES link at the top of MEDICAL - it is always there for you to go back to. It helps me on my down days, my hard days.
It will also help you realize just how different we all are in response to treatments. There is no one size fits all my friend, but you are not alone either....
welcome...
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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glad you found us! This will be a place with a wealth of info, and not too much whining. I do most of the whining here, BTW!
You have a positive Lyme test, although you will find that it is supposed to be made by clinical Dx, even the CDC says that, so when you have a lot of symptoms, don't be so concerned by "how many" bands you have. You have the *important* ones.
So, it is like they have said, at first you go "hooray!", and then you realize that it is not an easy fix. But please don't get discouraged. At least you have an answer, and a place to go!
My best, Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey unexpected...
You said..
"So what would a purely positive IgG western Blot indicate??? That it is a PAST infection not current?"
To TRY to make it simple...
1. Most of the tests done are based on a VERY old and VERY limited criteria made up by a handful of "people" in the early days of Lyme... some who are on the IDSA band wagon and have been.... who I wouldn't trust as far as I could throw them... and surely over a hot cup of coffee and Dunkin' Doughnut.
2. The criteria the icky labs follow was also based on blood samples from patients from a VERY limited section of the country... who had VERY limited or specific symptoms... mostly arthritic and not neuro, etc. This action alone didn't allow for the variations in strains, sub-species, tick differences, etc.
3. The IgM is normally thought to be reactive in some folks in the earlier stages of Lyme. Once the infection has been ongoing for a while... some say 6 months.. or a year... not everyone the same.. the IgG can become positive. This USUALLY indicates an infection has been around a while.
BUT...
If you have been sick for a while.. and also haven't been treated or you relapse... the IgM can be high or return to a positive level. The IgM can even show up positive again during or shortly after treatment.
Having only a positive IgG.. the one usually positive after having been infected for a while.. can mean...
A. The IgM response wasn't strong enough to register on the tests. This can be from the keets leaving the blood stream... and once they do this... and that IS their goal... the body doesn't detect them as well, if at all, and the ANTI-bodies are not produced as strongly.
B. The body is fighting other infections and the body is producing antibodies to those infections rather than the Lyme at the time... and once the other infections are knocked down a bit.. they may come bouncing back.
C. other reasons.. but my brain is giving out. After midnight it does that sometimes. Sorry.
If you have a certain circumstance you want help with... please let me know. I will try to help.
I am not a doctor... nor a lab tech... just someone who has read more Lyme test results than all the raisins in Post Raisin Bran.
I am trying to PM you, but for some reason I cant....I will try again!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Hey guys, fist off a big THANKS to everyone who replied and shared your information with me, it is much appreciated.
I am still having trouble wrapping my head around the idea of "false positives" and the fact I had high EBV titers, and still have high Strep titers.
Also my onset was a sudden onset, I can still remember the date and time, almost 3 years ago now.
Kind of crazy to think it may have been Lyme all this time. However, during my research it seems sudden onsets can occur with Lyme, so that was comforting.
I always felt my brain fog and cognitive symptoms were worse then the majority of those with CFS.
I think this is making me lean towards the Lyme a little more as well. Still, I have lived in Arizona my entire life, got sick when I was in California both low Lyme areas I believe.
Anyway, my next appt is the 29th and I plan to pick my doctors brain as much as I can. I did the samento one night so far, just one drop and water and believe I herxed pretty bad the following day, just the feeling were I had to go to the bathroom real bad, was sweating, felt hot, and anxious. I believe it was a Herx, because I haven't had that feeling for some time.
Once I visit my doc I will fill you guys in on what his "plan" is and which antibiotics he recommends, its still hard for me to accept this diagnosis but im trying.
I still think there is just so much up in the air surrounding Lyme and im having trouble researching it and taking it all in. But in the end, my symptoms match so who knows.
Again I appreciate all the support and information, I will keep you guys updated on my progress.
Thanks again, Trevor
Posts: 59 | From Arizona | Registered: May 2008
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IgM can be positive if chronic too, indicating an active chronic infection.. but IgG indicates it has been there a while.
Dr C of MO says:
Quote....
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
++++++++++++
TC.. I think we're both right! I'll just leave the explanation to the master!
======================
Trevor... You're "leaning towards Lyme???" You've got 5 Lyme specific bands!
Reacting to Samento is a pretty big clue. Hope your appointment goes well. Please report back!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Trevor, if you want to continue with the Samento, you can dilute it to less than one drop. For 1/2 drop, just put one drop in water, swirl or stir, then pour half of it out and refill with water. Do it again for 1/4 of a drop, and so on.
Maybe you can find an amount you can tolerate without too much of a herx, and also try some of the supplements that help keep the toxins from reabsorbing into the digestive tract, like chlorella.
Good luck, Nutmeg
Posts: 386 | From WA state | Registered: May 2005
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Had the appointment today, I felt it went pretty well. I am feeling more confident that I truly have Lyme disease now. And am going to go ahead with treatment and see what happens.
My doctor chose Cleocin ( Clindamycin HCL ) as antibiotic number one. He wants me to do 900mg a day for 3 weeks then he plans to add another to the cocktail. He talked about Doxy but I guess we will see when that time comes.
Does anyone have any experience with Cleocin good or bad? Or anyone currently taking it for Lyme? He wants to see how my body reacts to 3 weeks on it, and if it seems to be doing ok we will stick with it. If not he said we can always switch up the antibiotic. Why he choose this one im not really sure.
Soo thats the plan for now, im going to continue the many supplements im taking and keep up on the probiotics to fight off the antibiotic symptoms. Hopefully Lyme is the case and I can see some improvement in a few months.
Ill keep you guys updated thanks for the support,
- Trevor
Posts: 59 | From Arizona | Registered: May 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Trevor
Your test were More positive than mine and I saw the bullseye bruise so I have Zero doubt of my infection --
Clindamycin is Biaxian the more common name- Yep Very Good ABX -
Did you get bit in AZ?? -jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Welcome to the board - feels like a double-edged sword when I say that. I have Lyme and a slew of co-infections. I do not have experience yet with the abx you're starting. I started on Zithromax and have just added Flagyl and will begin Mepron next week.
You mentioned the hope of feeling better in a "few months." Don't get discouraged! Of course we're all different...I have co-infections and was sick apprx 4 years prior to diagnosis.
But...I am 3 months into tx and any progress is oh-so-slow, if any. I do believe, in time, I will get better; but, not much change yet. Hopefully, I won't have to go IV, but who knows? My brain MRI did indicate "hyperintensities," not uncommon in LD - which sometimes requires IV.
Anyway, I too was hoping for a turnaround in a few months and am still waiting. It's hard to be patient, but I'm learning that is part of this "job description." So, hang in there. At least it appears you know the beast you're battling. Good luck and keep us posted on how you're doing.
Posts: 566 | From West Coast | Registered: May 2008
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