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hanelo4 04-18-2007 07:34 PM

My Lyme test results
 
Here are my Lyme IgM Western Blot results:

18 kDa ++
22 kDa -
23-25 kDa -
28 kDa -
30 kDa -
31 kDa -
34 kDa -
39 kDa IND
41 kDa +
45 kDa -
58 kDa ++
66 kDa -
73 kDa -
83-93 kDa IND

So, by these results, my doctor did a CD57 test to see if I have a co-infection. I think I had a Herx reaction when I first got on antibiotics. All my symptoms came back by the 3rd day on them with a vengence. He wants me to wait to see what the CD57 test says them he may put me on some stronger antibiotics.

My IGG was negative. Here are the results:

18 kDa -
22 kDa -
23-25 kDa -
28 kDa -
30 kDa +
31 kDa -
34 kDa -
39 kDa -
41 kDa +
45 kDa -
58 kDa -
66 kDa -
73 kDa -
83-93 kDa -

ticker 04-18-2007 08:08 PM

Re: My Lyme test results
 
Hi Chantel. Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

Did your doctor test you for each of the co-infections--Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? A CD-57 test does not show co-infections.

Band 41 is often the first to show, and yours is positive. Bands 39 and 83 are Lyme specific and yours are IND.

What meds are you taking?

hanelo4 04-26-2007 12:26 AM

Re: My Lyme test results
 
Hey Ticker,

Thank you for all of the info. My doctor put me on 500mg of Levaquin to see what happens. He is also talking about putting me on a stronger antibiotic because he thingks I have a co-infection. He thinks that is why my liver enzymes were high. I'm not sure what all I got teated for. This all confuses me. All I do know though is that when I am on Levaquin, the first few days, I feel really awful. All of my symptoms come back real strong. He thinks I am herxing. After those few days though, I start to feel better. Now that I think about it, when I was put in the hospital for a bladder infection last year, I think I herxed then too. I was put on 2 strong IV antibiotics then.

What do you think I should be on right now? My doctor listens very well and is up to anything.

P.S.- I think he is not really sure if I have it or not so that's why he put me on a months worth of Levaquin to see what happens since I told him that I feel better on it. He has to be careful with my liver. I really don't want to be on too much right now since I'm so scared with my liver and he knows that.

Chantel

sarah92202 04-26-2007 09:40 AM

Re: My Lyme test results
 
Chantel, one thing that Dr. Forrester is known for is the Herx reaction. he believes in trying an ABX for a month to see if you herx before he radically treats you for LD. This is his way of proving to himself that he is going foward with the right Diag. He did this with my friend Lisa and with another friends daughter who had already been daig. by Dr Jones. I wouldn't necessarily say he doesn't really believe you have LD, I think this is just his protocal. Your IGG was pos. by Igenex? Thats a pretty sure sign you have LD. A low cd57 is common in LD patients, not in other diseases that's why he is checking it, not for co-infections. I think he is a very cauteous LLMD. And that is a good thing. Sarah

Beachgirl0916 04-26-2007 12:31 PM

Re: My Lyme test results
 
[QUOTE=Chantel2003;2930860]Here are my Lyme IgM Western Blot results:

18 kDa ++
[/QUOTE]

Look up online what Dr. Jones says about the 18 antibody on a Western Blot. He believes THIS BAND alone is enough to prove lyme. IT is in many articles.

ticker 04-26-2007 12:51 PM

Re: My Lyme test results
 
Hi Chantel. Many people who have Lyme get eleveated liver enzymes. If your liver is healthy, taking the supplement Milk Thistle daily can help with this.

Be careful with Levaquin. One of the possible side effects is tendon pain. This can lead to serious problems. If you have any pain you may think is from this, do not assume it is a herx. Call your doctor.

You need to be tested for all of the co-infections by a Lyme lab. It is best to know upfront what infections are present so you can get the best treatment for your case.

hanelo4 04-27-2007 12:05 AM

Re: My Lyme test results
 
[QUOTE=sarah92202;2946805]Chantel, one thing that Dr. Forrester is known for is the Herx reaction. he believes in trying an ABX for a month to see if you herx before he radically treats you for LD. This is his way of proving to himself that he is going foward with the right Diag. He did this with my friend Lisa and with another friends daughter who had already been daig. by Dr Jones. I wouldn't necessarily say he doesn't really believe you have LD, I think this is just his protocal. Your IGG was pos. by Igenex? Thats a pretty sure sign you have LD. A low cd57 is common in LD patients, not in other diseases that's why he is checking it, not for co-infections. I think he is a very cauteous LLMD. And that is a good thing. Sarah[/QUOTE]

Hey Sarah,

As you can tell, I still don't know enough about this disease. Thank you for clarrifying everything for me. I really like Dr. forester and I know in my heart that he will do everything he can for me.

No, both of my tests came back negative. I had some positive bands though on my IGM. 39 was IND and 41 was +. That's why he put me on the abx.

I was confused about the CD57 test. I took in so much information that day. Thanks for explaining that to me. I remember now.

Chantel

hanelo4 04-27-2007 12:07 AM

Re: My Lyme test results
 
[QUOTE=Beachgirl0916;2947224]Look up online what Dr. Jones says about the 18 antibody on a Western Blot. He believes THIS BAND alone is enough to prove lyme. IT is in many articles.[/QUOTE]

Beachgirl,

Oh wow, I didn't know that. Thank you s much for letting me know. I will definately look it up. I feel so in the dark with this disease. It's still hard for me to believe I do have it since my tests are negative.

Chantel

sarah92202 04-27-2007 08:18 AM

Re: My Lyme test results
 
[QUOTE=Chantel2003;2948383]Hey Sarah,

As you can tell, I still don't know enough about this disease. Thank you for clarrifying everything for me. I really like Dr. forester and I know in my heart that he will do everything he can for me.

No, both of my tests came back negative. I had some positive bands though on my IGM. 39 was IND and 41 was +. That's why he put me on the abx.

I was confused about the CD57 test. I took in so much information that day. Thanks for explaining that to me. I remember now.

Chantel[/QUOTE]

Chantel, from what I have read and what Ticker posted the 41 band is specific for LD, I am also not pos. by CDC or Igenex but I have 41kDa and several other pos. on both IGM & IGG, same with my son. I have been told by 2 different LLMD's that I have LD and my neur. read the results and agreed also. So obviously that's why the LLMD's know we have LD even without the CDC or Igenex agreeing. Plus those are just guidelines they go by for reporting purposes, they even state on the report that double starred bands are significant at IND and +. I know what you mean about being confused. I have spent hour after hour every day for 7 months researching and reading everything and every book I could get my hands on and talking to people about LD. when my son and I got diag. we got his results on a Thurs. here in Texas and Mon. we were in CT seeing Dr. Jones, he had a cancelation or it would have been 3 months to get my son in. They told me about Dr. Phillips and he was able to see me Tues. I didn't even have my Igenex report back yet, but he started me on ABX's because of history and an Equivicol Elisa, and my CD57 came back before my Igenex report and it was 26. We had never been to CT before, and every test we had to take was in a different town. I drove all over that state, at least it's not as big as Texas, LOL But It was very overwhelming. :dizzy: And we only get to see our LLMD's every 3 months. So I made sure that I was going to learn everything I could about LD. Still I hear contradictory things all the time, because this disease is so different from person to person. This board has been alot of help to, we don't have a support group here, but I just finally found another adult here that has LD, the rest are children that go to my son's school. So I feel pretty lonely most of the time. Unless you have LD you don't understand how bad we actually feel. Hang in there, and learn as much as you can. I even go down to the bookstore, get a drink and read their books. Have you found a support group? You know that the board is here for you to help, There also is a monthly newspaper called the Public Health Alert you can order for $30.00 a year You just send the payment to: Public Health Alert 821 Sansome Dr. Arlington, TX 76018. Bryan Rosner sent me the April & May copies of it and it is really a great newspaper, it has personal stories and info about ILADS and IDSA and everything that is going on with LD. Sincerely, Sarah:)

hanelo4 04-27-2007 05:04 PM

Re: My Lyme test results
 
Sarah,

Thank you so much for all of the info. I will definately order the paper and start reading more about LD. I guess sometimes in my mind I think that I don't really have it, KWIM? Everyone here looks at me like I'm crazy and most of the doctors here don't believe we have Lyme in Louisiana. The funny thing about that is that I know a few people here that have had it already and Dr. Forester also treats many people from here that have it too. Sometimes, I think.........am I crazy or what? Do I have something else? I go round and round with it all even though I have a lot of the symptoms from Lyme. I guess I doubt myself too much sometimes. I just wish it would have came back positive so I would know for sure.

I haven't found a support group yet but I will keep looking. I think Dr. Forester might know of one. I will ask the next time I go.

I hope you and your son feel better soon.

Chantel

sarah92202 04-27-2007 06:06 PM

Re: My Lyme test results
 
Chantel, I know what you mean about the doubting. I think it is just us not wanting to have it, but deep down we know we do. Ever since I got my Igenex report back last year I have not been in denial. But when I received my Elisa and it was equivicol and my doc said I didn't have LD I spent years thinking, I have it, they are wrong. I don't have it, they are right. I didn't research it then other than look up the symptoms. I researched everything else they kept saying I possibly had. But nothing fit right. I finally just gave up on the doc's and stopped seeing them at all and went into complete denial that there was anything wrong with me at all. But then when my son was having some of the same symptoms and his doc's couldn't figure out what was wrong with him. I was like. How can we have the same symptoms but are all neg. for autoimmune diseases. Then when his new ped. immediately suggested LD within the first 5 min. of his appt. I knew it was LD, it explained everything. His Igenex report came back before mine, but I knew that the LLMD would diag. me with it to. I guess because I have a son that has been diag. with it too, and by a different LLMD than me, and he has the same symptoms as me it is easier for me not to doubt it than other people, I am so sorry that you have LD, but you are not crazy, and i know how you feel, it is a hard and lonely road. Thank Goodness we have this board, and each other. Sincerely, Sarah

hanelo4 04-29-2007 02:28 AM

Re: My Lyme test results
 
[QUOTE=sarah92202;2950028]Chantel, I know what you mean about the doubting. I think it is just us not wanting to have it, but deep down we know we do. Ever since I got my Igenex report back last year I have not been in denial. But when I received my Elisa and it was equivicol and my doc said I didn't have LD I spent years thinking, I have it, they are wrong. I don't have it, they are right. I didn't research it then other than look up the symptoms. I researched everything else they kept saying I possibly had. But nothing fit right. I finally just gave up on the doc's and stopped seeing them at all and went into complete denial that there was anything wrong with me at all. But then when my son was having some of the same symptoms and his doc's couldn't figure out what was wrong with him. I was like. How can we have the same symptoms but are all neg. for autoimmune diseases. Then when his new ped. immediately suggested LD within the first 5 min. of his appt. I knew it was LD, it explained everything. His Igenex report came back before mine, but I knew that the LLMD would diag. me with it to. I guess because I have a son that has been diag. with it too, and by a different LLMD than me, and he has the same symptoms as me it is easier for me not to doubt it than other people, I am so sorry that you have LD, but you are not crazy, and i know how you feel, it is a hard and lonely road. Thank Goodness we have this board, and each other. Sincerely, Sarah[/QUOTE]

Sarah,

Thank you for that. I have been so emotional lately. My thyroid has been up and down and I just feel like I'm completely crazy sometimes. Try making someone believe you have Lyme when you're so emotional, lol. Anyway, thanks for all of the support. I truly need it right now. It has been a long, long road and sometimes I am so ready to just give up. I am tired of going to so many doctors and being poked for blood. I just want to feel better.

Hugs:)
Chantel

sarah92202 04-29-2007 03:17 PM

Re: My Lyme test results
 
Chantel, I know what you mean, I am so sick of this illness too. are you taking any vitamins or supplements to help your immune system. Magnesium is a must and so are probiotics. Hang in there, and we are here for you.. Sincerely, Sarah

hanelo4 04-29-2007 05:55 PM

Re: My Lyme test results
 
[QUOTE=sarah92202;2952658]Chantel, I know what you mean, I am so sick of this illness too. are you taking any vitamins or supplements to help your immune system. Magnesium is a must and so are probiotics. Hang in there, and we are here for you.. Sincerely, Sarah[/QUOTE]


Hey Sarah,

Thanks hun:) Ys, Dr. Forester told me to take Magnesium, Sam GLA, Calcium, and Vitamin D. I've never met a doctor that ever told me to take supplements before. I believe in supplements 100%.

P.S.- What are probiotics?

Hugs,
Chantel

sarah92202 04-29-2007 07:53 PM

Re: My Lyme test results
 
[QUOTE=Chantel2003;2952854]Hey Sarah,

Thanks hun:) Ys, Dr. Forester told me to take Magnesium, Sam GLA, Calcium, and Vitamin D. I've never met a doctor that ever told me to take supplements before. I believe in supplements 100%.

P.S.- What are probiotics?

Hugs,
Chantel[/QUOTE]

Chantel, I'm glad he told you about the supplements, that is a good sign! Most doc's skip that part and it is very important. ABX's not only kill of the bad bacteria but also the good bacteria in your digestive track and vagina and can cause yeast overgrowth, probitoics restore that good bacteria, it's in yougart and you can buy it in pill form that has alot more live cultures than yougart. I take PB8 and eat yougart, but there are alot of different brands out there in the vitamin/supplement section of any store. they even have chewable ones. You have to get some and take them everyday! I am also taking Wobenzym N, which I feel has helped with my energy, it is an enzematic supplement, my Endo said it was a very good thing to take. Take Care, Sarah:wave:

hanelo4 04-30-2007 03:21 AM

Re: My Lyme test results
 
[QUOTE=sarah92202;2953007]Chantel, I'm glad he told you about the supplements, that is a good sign! Most doc's skip that part and it is very important. ABX's not only kill of the bad bacteria but also the good bacteria in your digestive track and vagina and can cause yeast overgrowth, probitoics restore that good bacteria, it's in yougart and you can buy it in pill form that has alot more live cultures than yougart. I take PB8 and eat yougart, but there are alot of different brands out there in the vitamin/supplement section of any store. they even have chewable ones. You have to get some and take them everyday! I am also taking Wobenzym N, which I feel has helped with my energy, it is an enzematic supplement, my Endo said it was a very good thing to take. Take Care, Sarah:wave:[/QUOTE]

Hey Sarah:)

Oh okay. I didn't know them by that name. I have bifodus here which is the same as acedophilous(sp?). I haven't taken it yet. I'm so bad for that, but I will start taking them tomorrow since you reminded me. Dr. Forester also put me on Nystatin to get rid of a yeast infection I've been having for a while but I haven't started taking them yet because they were a little harsh on my stomach. You know how it goes. If it's not one thing, it's another.

I've never heard of Wobenzym N. I will have to research it. Thanks so much for all of your help. You seem very knowlegable in so many things.

Hugs,
Chantel

sarah92202 04-30-2007 08:27 AM

Re: My Lyme test results
 
[QUOTE=Chantel2003;2953302]Hey Sarah:)

Dr. Forester also put me on Nystatin to get rid of a yeast infection I've been having for a while but I haven't started taking them yet because they were a little harsh on my stomach. You know how it goes. If it's not one thing, it's another.

IHugs,
Chantel[/QUOTE]

chantel, are you married or in a relationship? Im asking because the yeast overload gets passed on to your partner. and even if you get rid of it he will re-infect you with it during sexual int. He probably isn't having any symptoms, but needs to be treated for it also. It is a vicious cycle that unless both of you are treated will just keep being passed back and forth. If he's like my husband he will insist that he doesn't have it and not want to take anything. Do your research and give him proof other than my say so. And ask Dr. forrester. I don't know why doc's don't tell us this. There is a Holistic place here that even has a commercial on TV explaining it. But the doc's never tell us. But I'll bet if you asked you'd get the answer. i finally gave my husband the altimatum, and he took the Nystain and now takes the acidophilus daily. Unfortunatley this has to be a joint effort! There are a ton of books out there on Yeast at the Library and bookstores, it seems to be a major contributer to our fatigue and stomach problems. As for the Wobenzym N. I read about it in Bryan Rosner's new book The Top 10 Lyme Disease Treatments, it is an excellent book. the W-N can be used to help in digestion if taken with meals, it helps insure that the food is digested completely, but taken in between meals it helps LD, it helps with inflammation and there is significant evidence that it can directly attack and kill lyme bacteria. I've talked to my LLMD and my endocr. about taking it and they both agree it is an excellent supplement that can be taken with antibiotics also. I wouldn't continually take it month after month though if you get it take breaks like every other month. and don't take it without discussing this with Dr. F. first. Since I started it I do feel a little more energetic, but what I have found is that I stopped having night sweats completely. I usually have them bad every night, I have to change my tee shirt or gown in the middle of the night every night. But no night sweats at all since the second day on them. It's amazing. My LLMD tried for 6 months to get my NS's to go away with just ABX's. And this supp. did it in 2 days. Well, I hope this helps, and good luck with everything. Remember the more you know the better off you are, research everything! Sincerely Sarah:)

ticker 04-30-2007 10:03 AM

Re: My Lyme test results
 
Hi Chantel. Just a reminder to wait at least two hours before or after taking the anitibiotics to take the acidophilus.

ticker 04-30-2007 10:04 AM

Re: My Lyme test results
 
Hi Sarah, did you test positive for Babesiosis?

sarah92202 04-30-2007 02:35 PM

Re: My Lyme test results
 
[QUOTE=ticker;2954023]Hi Sarah, did you test positive for Babesiosis?[/QUOTE]

Ticker, no, I was tested for Babesia IGM/IGG, E. chaffeenis-HME IGM/IGG, HGE IGM/IGG. B. Quintana IGM/IGG, B. henselea IGM/IGG all neg. CD57 was 26 These tests were done by my LLMD in CT in Oct. 06. But I am waiting on results for my WA-1 babesia, We didn't test for West coast strains in Oct, but I am from WA. ST. and it's possible I got babesia there, I had a tick embedded in my leg years before I moved here to Texas, and I have had some wierd symptoms since that bite like the night sweats. So I just want to make sure to cover everything. I was probably infected first in WA. and then again in Texas. I had my son completely tested for the WA-1 strains in Jan. but he was negative. Do you have Bab? Sarah


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