Omg...i Might Be On To Something

[confused]

Yay Paula!!! Thats great news....even though your hubby was very sweet and understanding about it I know that a replacement is not the same as the one you'd lost. So I'm really happy that you found it.

.

Wow, you found the needle in the haystack!!! YAY!

Paula, that is such good news! That could have been me...but I discovered in time that the setting was loose and put my ring in a safe place until I can get it repaired.

YAYAYAYAYAYAYAY!!!!!!!!

Thanks everyone. I cant believe I found it. This morning i jumped out of bed to make sure it was still were i hid it last night lol.

paula

[aprilh]

Hi Everyone! Here are my Igenex Test results.

Lyme Igm Western Blot:

**23-25 kDa. = IND

30 Kda. = +

**41Kda = ++

**83-93 Kda = IND

Lyme IGG Western Blot:

**23-25 kda = -

**39 kda = IND

**41 kda = +

45 kda = +

58 kda = +

B Burgdorferi - negative

So, the LLMD said I was mostly indicating positive and since I don't have any "debilitating" symptoms, he just doesn't think Lyme is the problem. Of course he did want to do a fat biopsy and I wouldn't let him.

I got sick after an epidural with my second child along with IV antibiotics during delivery since I was positive for that bacteria (forgot the name). That is when the yeast when haywire and I developed leaky gut. I think I then had so many toxins from the yeast bi-product that it built up in my body and liver. I think yeast definately impair detoxification.

Then, dumb me, tried to detox on my own without all the proper measures in place using cilantro and that is when the phase II pathways became very blocked.

April

[CarlaB]

April, are you sure your doctor is an LLMD?

Your test is not positive, but Lyme is known to produce false negatives. Many LLMD's will do a trial run of abx to see if they cause a reaction in you or if they can trigger a test to be positive.

My daughter was actually treated on a "less positive" test than yours. She had few symptoms .... but the few she had went away with abx treatment.

[AndreaB]

April,

I'm no expert, but with the starred bands you have I don't believe it would hurt to seek a good LLMD for treatment and further diagnosis.

Also, if you're mostly indicating positive, but he doesn't believe you should treat due to "not many symptoms"....I'd see someone else.

[AndreaB]

There is also someone else who had either + or IND on bands 30, 39, 41, and 58 and was treated for many co-infections and is back to a normal life now. Those bands vary between the IgM and IgG.

This isn't something to mess with, imo.

[AndreaB]

This is something I had copied over from earlier in the thread. Don't remember who first posted it.

18 kDa the specificity of this protein has been recently established; excellent marker for late infections.

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

[AndreaB]

Donna,

Are you going to add this to the chart and send it out?

[CarlaB]

April, I'm with Andrea, don't wait for there to be enough symptoms for your doctor to think you have Lyme! My daughter had a relatively easy time with treatment. Even during a herx she went to a water park with her friend!

On the other hand, here I am 15 months later, herxing from a new med, in bed sick with fever for two days. Adam just brought me lunch (unrequested by me!!!) of a half sandwich, soup and potato chips from Panera Bread .... I ate the soup and chips, can't even look at the sandwich. Anyway, this after 15 months of treatment because it took me so long to get diagnosed.

I would make an appt. with Dr. J ..... www.jemsekspecialty.com. I believe he's the closest to you.

Now, if HE says you don't need treatment, then you don't. But, please, don't wait, let an expert figure this out for you.

[dlp252]

Yep, added to the chart, be sending that out shortly...just so you know...I changed the format, lol. It was obvious that we were going to have more people than bands, so I reversed it...put the band labels at the top of the page and will list the people down. That way it will stay on a smaller sized page.

April, I have an Excel spreadsheet on which I've put everyone's Igenix scores, if you have Excel and would like to see it, PM me your email address.

I've added LittleMiss's CD57 score and will add her Igenix scores when I get them.

[AndreaB]

Sounds like a good revision Donna. I gave up keeping track of these since I like your spreadsheet so much better.

[aprilh]

April, are you sure your doctor is an LLMD?

Your test is not positive, but Lyme is known to produce false negatives. Many LLMD's will do a trial run of abx to see if they cause a reaction in you or if they can trigger a test to be positive.

I wouldn't consider him an LLMD, but he is an environmental doctor who treats lyme.

April,

I'm no expert, but with the starred bands you have I don't believe it would hurt to seek a good LLMD for treatment and further diagnosis.

Also, if you're mostly indicating positive, but he doesn't believe you should treat due to "not many symptoms"....I'd see someone else.

I am confused because he indicated I looked mostly negative with a slight 5% positive indication in his opinion. But based on symptoms too, he was thinking no.

This is something I had copied over from earlier in the thread. Don't remember who first posted it.

18 kDa the specificity of this protein has been recently established; excellent marker for late infections.

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

So, the 41 IGM would indicate Borrellia?? Good to know. Thanks Andrea!

I would make an appt. with Dr. J ..... www.jemsekspecialty.com. I believe he's the closest to you.

Now, if HE says you don't need treatment, then you don't. But, please, don't wait, let an expert figure this out for you.

I think I will do that. Just to be on the safe side. I felt really guilty for all the money I spent at that other dr. My hubby doesn't know. Maybe it won't cost too much since I already have the Igenex labwork.

[confusedks]

April,

I agree that you need to be evaluated by an LLMD. I have seen many other Dr's who supposedly treat Lyme...but they really don't have a clue what they're doing.

[Rachel--24]

So, the 41 IGM would indicate Borrellia?? Good to know.

Actually no....the 41 band is not Lyme specific.

The 41 band is the "flagella".....the tail of the bacteria. Since lots of bacteria are known to have a flagella it is not specific to Lyme....any bacteria that has a flagella can make the 41 band positive.

The bands represent certain "parts" of the bacteria....some of them are highly specific to Lyme and others are not. Band 41 will be positive in anyone who has Lyme but also in people who DONT have Lyme.

[Rachel--24]

I wouldn't consider him an LLMD, but he is an environmental doctor who treats lyme.

I agree that you definately should see an LLMD to get this properly ruled in or out. It doesnt sound like this Dr. handled it the way most LLMD's would.

I wouldnt say that you are symptom-free and you still havent found a cause for the symptoms that you do have. Lyme can impair detoxification.

I did not have a positive test but I did have some positive bands and I had alot more testing done after that to be sure about what might be going on. In addition to the Western Blots I had an IFA, CD57, co-infection testing and then all of the ART.

I dont think I would dismiss it based on one Dr.'s opinion. I'd definately investigate every possibility until I felt very sure that I have my answer....one way or the other.

[confusedks]

Carla,

When did your GI symptoms go away? Was it with Bart treatment? And, was there anything you could eat without getting cramps? This seems to be coming more and more often for me lately...

When I'm not nauseous I have cramps, LOL!

[CarlaB]

Kassandra, the GI symptoms went away with bart treatment.

Prior to that only smoothies and fudge didn't make my stomach cramp. I also had a lot of nausea. I used to have a smoothie and fudge for breakfast, then I'd put off eating lunch as late as I could in case it made me feel bad.

Van's waffles and eggs didn't usually bother my stomach, so I used to eat those for lunch. Then almost anything I would eat for dinner would cause the cramping.

I'd have another smoothie before bed. I never had a regular BM during this time, it was always diarrhea.

Once I treated for bart, this all cleared up.

[mftnchn]

April, I agree with the advice given here. Even at best, Igenex is what, 30% inaccurate?

Wow, Carla, I didn't realize how much was going on before you treated for the bart.

With the babesia, could those of you who get it describe the air hunger? How is that different from asthma? The asthma I get is a "silent" form, no wheezing is audible. The small vessels close down rather than the large vessels, and I just get really faint. If I try to take a deep breath, I'll notice tightness, if it gets worse, I just can't expand my lungs but I still don't wheeze. I can get short of breath with exertion.

Is that anything like what you describe as air hunger?

Sherry

[Green12]

With the babesia, could those of you who get it describe the air hunger? How is that different from asthma? The asthma I get is a "silent" form, no wheezing is audible. The small vessels close down rather than the large vessels, and I just get really faint. If I try to take a deep breath, I'll notice tightness, if it gets worse, I just can't expand my lungs but I still don't wheeze. I can get short of breath with exertion.

Is that anything like what you describe as air hunger?

Yeah, I still don't understand what air hunger is so I am not sure if I have it or not

Kassandra, sorry about the nausea and the cramping I hope that goes away for you soon.

I've been thinking about you, hoping you are doing ok

April, I can't weigh in on the Igenex test results, I don't know enough about it.

I just really admire you fro keeping after everything, always searching for answers for yourself to get healthier.

[rinne]

Thank you all for caring today. But i found it. It was under the sofa cushion. I kept telling myself that i had to find it and kept praying. I picked up the last cushion and there it was. I am so happy now. It means so much to me that you all cared, now we can get back to talking about everything else lol

paula

Wonderful news.

....

If you can tolerate Vit C and magnesium it would do wonders for the constipation issue. I am using Thorne buffered C which also has magnesium, and I also tolerate a magnesium called Natural Calm. I recently started using an ART practitioner to help figure out what I can tolerate, and that has been helpful.

Sherry

A good point about some supplements being easier to tolerate, I know one brand of magnesium that bothers me but another that doesn't.

This is something I had copied over from earlier in the thread. Don't remember who first posted it.

18 kDa the specificity of this protein has been recently established; excellent marker for late infections.

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

Thanks Andrea.

I agree that you definately should see an LLMD to get this properly ruled in or out. It doesnt sound like this Dr. handled it the way most LLMD's would.

I wouldnt say that you are symptom-free and you still havent found a cause for the symptoms that you do have. Lyme can impair detoxification.

I did not have a positive test but I did have some positive bands and I had alot more testing done after that to be sure about what might be going on. In addition to the Western Blots I had an IFA, CD57, co-infection testing and then all of the ART.

I dont think I would dismiss it based on one Dr.'s opinion. I'd definately investigate every possibility until I felt very sure that I have my answer....one way or the other.

I'm with Rachel on this even though I haven't been nearly as thorough as she has. My Igenex and I do think Igenex is more than 30% accurate, I seem to recall a challenge they went through where it was proved that they were more accurate than other labs, showed a constellation of indeterminates on the Lyme specific bands, I had almost all the symptoms and the doctor I saw initially gave me a Lyme diagnosis based on my physical condition.

I have never taken ABX.

I am way too busy and will probably not be able to post so much, on the other hand I am having fun at my restaurant, (it is my stage ) and I think I am going to be able to make it work.

Gotta go and spend some time with my sweetie.

[AndreaB]

Rinne,

Glad the restraurant is working out. We don't mind if you can't be frequent, but we wouldn't mind a "hello" once in awhile.

[aprilh]

April, I can't weigh in on the Igenex test results, I don't know enough about it.

I just really admire you fro keeping after everything, always searching for answers for yourself to get healthier.

Julie, I just don't know enough myself. And I can't seem to grasp an understanding of what I do read

I had to step back and not think about it a while and see how I felt. Then after a while, I realized that "something" else MUST be going on - since I can't really pinpoint anything else. So, I want to start searching this out again.

Carla,

I am going to call the doc you recommended. Thanks for sending me his website.

[confusedks]

Sherry,

About the air hunger, I was diagnosed with asthma when I was about 10. It felt the EXACT same way air hunger feels for me. I actually don't really know whether I have asthma or its air hunger. I used to take asthma meds and they did help...so I'm thinking it is asthma. I should be re-tested.

But, assuming I do have air hunger and NOT asthma, it feels like you can't breathe...and I get faint too. My heart starts to race (resting my heart rate goes up to 120-130 bpm). It feels like my heart is being overworked to make up for the lack of oxygen.

I really don't know if I could answer because I really now don't know whether I've been having asthma or air hunger! I'm glad you brought this up...I'm going to ask Dr H on Saturday!

Carla,

Thanks for answering. I wonder if I have bart or not... Dr H has suggested it a few times, but we are focusing on babs right now.

I have been getting nauseous again after everything I eat. I feel like I felt before I was gluten-free.

[mftnchn]

Kassandra, I'll be interested in what he says. I don't usually feel like I can't breathe and don't have the racing heartbeat. Just incredible fatigue, brain fog, and when I try to take a deep breath, that sensation of tightness.

I've been afraid to use my inhaler because it might be a steroid. I thought maybe when I took my antihistamine it got a little better.

[mftnchn]

I really needing some suggestions for what to do to help my husband. We've had a totally weird experience and are at a loss.

Beginning in Feb (right after our return to the USA and about the time he started humaworm and I finished), we both got itchy necks. He also got an itchy patch on one leg, that started first. The leg looks like dry skin but with areas that are broken down. My neck issues were less severe and rarely showed any rash or hives, maybe one or two occasionally. His would have hives on the neck and itched mercilessly. He tried various kinds of ointments and creams and nothing helps. Doctor told him the leg problem was dry skin but it never responded to any lotion.

Mine went away gradually, maybe after I got back to China I haven't had it. His continued. We have tried laundering everything. Soaps and stuff were not changed. It has been totally limited to these two areas of the patch on the leg and his front neck.

Now his leg seems to be improving, and his neck is itching less but his has small solid lumps below the surface of his skin on his neck. One has brown discoloration around it, and looks a little like a zit but he says it doesn't feel like a zit. The others just feel like little solid bumps and look a little whiter than the normal skin around it. I count a half dozen of these lumps. They are a little tender or irritated to the touch.

This is so totally weird that we don't even know what to research on google. Out here we don't have too many options for getting it looked into. He has never really been an allergic person.

Could this be something triggered by humaworm? Julie does this sound like angioedema?

Any ideas would be greatly appreciated.

Sherry

[CarlaB]

Wow, Carla, I didn't realize how much was going on before you treated for the bart.

Yes, treating bart was a miracle for me. We "accidentally" discovered the bart when he put me on Cipro for my gut infection. I got better in all ways on the Cipro, which doesn't treat Lyme.

With the babesia, could those of you who get it describe the air hunger?

When I get air hunger it is like I cannot get enough air. I feel like I'm taking half a breath rather than a full breath. I was tested for asthma because my sister has it and I had this trouble breathing, but they said I was actually hyperventilating. I was getting enough air.

Sometimes I have the air hunger in the presence of heart issues like palpitations or skipping beats, but I can have just the air hunger without the palpitations.

Carla,

I am going to call the doc you recommended. Thanks for sending me his website.

YAY, YAY, YAY! Your welcome. He seems like a great doctor from the things I've heard. He appears on the movie Under Our Skin. You can see the trailer at www.underourskin.com.

Carla,

Thanks for answering. I wonder if I have bart or not... Dr H has suggested it a few times, but we are focusing on babs right now.

I have been getting nauseous again after everything I eat. I feel like I felt before I was gluten-free.

That was what happened to me, I felt like I did before I was gluten-free. I made the significant progress when we added the bart treatment to the babs treatment. I don't know that we could have treated both in the beginning because of the horrible herxes I was having from the babs treatment, but in the summer last year (started treating in Jan), it took little time for me to feel relief on the Cipro.

I really needing some suggestions for what to do to help my husband. We've had a totally weird experience and are at a loss.

Could it have killed some kind of parasite in the skin? Could you google skin parasite?

Since skin is a detox organ, all I can think of is that something is being pushed out.