Igenex Results Rec'd Today

[fightingmom]

Well, I just got my Igenex results. Let me start by reiterating my previous labs.

 

Had WB done by Clinical Lab Partners/through Dr. B. in CT -- they actually do report 31/34 and I tested positive for band 34. They said the don't see this come up often and usually indicates chronic infection. Was surprised they actually knew that to be honest. In any case they suggested I go to LLMD. I have an appt. on May 11th. However, I did a phone consult with LLMD and he thought based on my symptoms over 15+ years that it was evident we were dealing with lyme and/or coinfections. He told me if I needed more convincing I could have the CD57 done. So, I did. CD57 -- 20 Low. Then I went ahead and ponied up the $200 for Igenex WB. Not sure why, guess I just needed to be sure. Here are my results:

 

IGM Result Positive

**23-25 IND

**31 +

**41 +

66 +

**83-93 +

 

IGG Result Negative

**31 IND

**39 IND

**41 +

58 ++

**83-93 IND

 

I've researched the bands, I know the 23-25, 31, 93, 39, etc. are specific and significant. Somehow I still am trying to convince myself it's something other than Lyme. I think I'm nuts. This wasn't part of my plan. Frankly, I'm just pissed off~

[LNN]

Good goobely woo - you are lit up like a Christmas tree! Based on all these results, I wouldn't have a doubt in my mind that pursuing lyme treatment is a wise course of action.

[fightingmom]

Good goobely woo - you are lit up like a Christmas tree! Based on all these results, I wouldn't have a doubt in my mind that pursuing lyme treatment is a wise course of action.

 

 

I know it. I'm just in a bit of denial - albeit a stupid denial.

 

I am very grateful to you and a few others that messaged me and told me to run to an LLMD before even having any test results. You guys know your stuff! I am really thinking my son needs to be involved in this (he has appt with LLMD, too). Now, I even wonder if the zithromax has been helping with his raging, etc. because he has a lyme component in all of this. And, perhaps the reason for his cycling behavior, a few weeks of good and then boom hit with a few bad days, then good again....boom...

Edited May 8, 2012 by fightingmom

[lfran]

And a couple of docs, including the Europeans,think 58 is quite significant.

 

Well, I just got my Igenex results. Let me start by reiterating my previous labs.

 

Had WB done by Clinical Lab Partners/through Dr. B. in CT -- they actually do report 31/34 and I tested positive for band 34. They said the don't see this come up often and usually indicates chronic infection. Was surprised they actually knew that to be honest. In any case they suggested I go to LLMD. I have an appt. on May 11th. However, I did a phone consult with LLMD and he thought based on my symptoms over 15+ years that it was evident we were dealing with lyme and/or coinfections. He told me if I needed more convincing I could have the CD57 done. So, I did. CD57 -- 20 Low. Then I went ahead and ponied up the $200 for Igenex WB. Not sure why, guess I just needed to be sure. Here are my results:

 

IGM Result Positive

**23-25 IND

**31 +

**41 +

66 +

**83-93 +

 

IGG Result Negative

**31 IND

**39 IND

**41 +

58 ++

**83-93 IND

 

I've researched the bands, I know the 23-25, 31, 93, 39, etc. are specific and significant. Somehow I still am trying to convince myself it's something other than Lyme. I think I'm nuts. This wasn't part of my plan. Frankly, I'm just pissed off~

[LNN]

Lyme has a roughly 4 week life cycle. Quite common to see a spike in symptoms every 4 weeks when the bacteria replicate.

Zith might be helping, but generally, you use a combo of abx - one extracellular and one intracellular. Zith would cover the intracellular, but LLMD will probably add an extra as well. If DS has all his adult teeth, the abx of choice is doxycycline. But you'll need to be careful during the summer months, as doxy causes sun sensitivity and you can get sunburn very very easily (like in minutes).

 

After a period of time, many LLMDs either rotate the abx combo or add a cyst-buster like tindamax or flagyl or herbs. But that's a discussion for later. For now, focus on detox and supplements like magnesium, zinc, the Bs, and a good antioxidant - alpha lipoic acid (tho I'd rule out metals first), or I like resveratrol. Something for liver support is good too, as you'll be making it work hard with all those abx and bacterial toxins. We use milk thistle for that.

 

Chin up. You know now. It will be a long journey. But it will be a productive one. You can stop running in circles and having surgeries that don't take care of the problem. You can get to the root. When I got DS's dx, I crashed. I was so very exhausted from all the Pandas stuff and had a lot going on personally. But 20 months later, my DH and I can't believe how far we've come and how good "normal" is starting to feel. The lyme dx was a blessing in disguise.

[sf_mom]

Neither PANDAS or Lyme are an easy fix. However, when you understand 'all' the infections/issues causing the immune system to topple the odds of success are to your advantage. I think your positive Lyme results will sink in and you'll soon motivate in your understanding (even though you have a fairly good understanding already) to get your family well.

 

I would document your son's bad days to see if you can't pick up on a cycle. Wishing you all the best on your journey to wellness. I can not express enough how important it is to have a regular detox program in place. Something you might try immediately to help yourself with fatigue is the following detox drink.

 

1. 1 oz. Aleo Vera (a lot of Bs, Zinc, E, Folic Acid, etc)

2. Juice of one lemon (detoxing/alkalizing)

3. Chorophyll Drops as directed on bottle (helps regenerate/oxygenate red blood cells)

4. Vitamineral Green by Health Force as tolerated (many anti-inflammatory green foods)

5. Enough water to fill glass and tolerate taste. Although I crave the drink and think it tastes great

 

This particular drink is very alkalizing and will immediately help combat any bacteria's in the gut. I'd also add 1/4 cup bentonite liquid (increase amount when you can tolerate) at bedtime 2 hours away from any supplements and antibiotics if possible.

Edited May 8, 2012 by SF Mom

[SSS]

Well, yes, you do have Lyme.

I understand the shock and disbelief.

But from personal experience,

I look at it like this:

I've got 1/2 my life left.

I have young children.

With treatment, my quality of life will improve, I will be around for them, present, able to watch them grow and become adults without being a burden, and

I will have the energy to do all the fun activities that most families do,

I am no longer in secret fear of being dx'd with Alzheimer's,

hopefully soon I will no longer have raging, pounding headaches,

or constant neck pain.

For the first time in over a decade, I am able to sleep through an entire night- 7 1/2 - 8 hours, in a row, without ever waking up-

I've had this for months now, still find it shocking.

 

The first Lyme book I read was

'Cure Unknown' by

Pamela Weintraub

Eplained a lot for me.

God bless, you can and will get better,

and there have been members here who have posted:

'Best thing I ever did for myself, hands down, was treat for Lyme'

[lfran]

Just a thought, vis a vis the B vitamins.

 

Several of us have gone ahead and tested for the MTHFR defect and come up positive. If this is positive, the "regular" b vitamins won't help -- you need the methylated form, which can be either by prescription or from places like iherb.com and other online vitamin suppliers (no prescription needed).

 

Was pretty shocked when my DS10 turned up homozygous for the MTHFR mutation, but supplementing with these special B vitamins has made a world of difference in his anxiety and other problematic symptoms. (Hasn't helped the tics, though, sadly).

 

 

Lyme has a roughly 4 week life cycle. Quite common to see a spike in symptoms every 4 weeks when the bacteria replicate.

Zith might be helping, but generally, you use a combo of abx - one extracellular and one intracellular. Zith would cover the intracellular, but LLMD will probably add an extra as well. If DS has all his adult teeth, the abx of choice is doxycycline. But you'll need to be careful during the summer months, as doxy causes sun sensitivity and you can get sunburn very very easily (like in minutes).

 

After a period of time, many LLMDs either rotate the abx combo or add a cyst-buster like tindamax or flagyl or herbs. But that's a discussion for later. For now, focus on detox and supplements like magnesium, zinc, the Bs, and a good antioxidant - alpha lipoic acid (tho I'd rule out metals first), or I like resveratrol. Something for liver support is good too, as you'll be making it work hard with all those abx and bacterial toxins. We use milk thistle for that.

 

Chin up. You know now. It will be a long journey. But it will be a productive one. You can stop running in circles and having surgeries that don't take care of the problem. You can get to the root. When I got DS's dx, I crashed. I was so very exhausted from all the Pandas stuff and had a lot going on personally. But 20 months later, my DH and I can't believe how far we've come and how good "normal" is starting to feel. The lyme dx was a blessing in disguise.

[Orion]

Fightingmom-

 

It is quite understandable, and justified!, to be pissed off. Why it is so much easier to believe abnormal test results for our kids, instead of for ourselves, I don't know. We are perhaps much more objective in figuring out their problems instead of ours.

 

I am glad you have some answers. That band 34 is an certainly an indication of chronicity as it doesn't show up early in the infectious process at all.

 

Yes, track both yours and your sons symptoms- good days and bad. It doesn't have to be elaborate- I use a Hallmark datebook for DD and jot down any new or worsening symptoms. I also rate the days: 0 for whatever the current baseline is, +1 or -1 if it is better or worse than baseline. Bring the datebook to every Dr. appt. Our docs appreciate that, that way you can give a specific answer as opposed to an educated guess. It also can serve as a reminder for what questions you want/need to ask. [i have to admit, I do record things religiously for DD, but not for myself...Hmmmm I really do need to improve on that.]

 

DD's flare-ups were like clockwork. Lyme every 4 weeks, Babesia every 3. Every few months there was a double whammy, and we learned not to schedule anything on those days.

 

Good Luck! Feel free to PM me if you have any questions.

 

~Orion

[fightingmom]

Just wanted to say thank you to each of you for your well thought and extremely helpful posts. If you think of more tips or tricks please continue to post them. I will step up on detoxing and start really upping probiotics for myself and my son as well. I have charcoal, but will buy the clay and aloe juice later today.

 

MTHFR has been on my short list -- going to discuss this with LLMD and ask to order tests for both of us. I definitely see methylation pathway as being greatly important. I have seen improvements since adding zinc -- along with zithromax for my son. He's currently on zith and augmentin. Though, my hunch is that the augmentin is not doing much. His cycles seem to hit more at about the 2 1/2 week mark. Just past 2 weeks and I notice a bump in the road with him. He also gets worse around day 4 of new abx but then levels out again.

 

I'm a little worried about the multiple rounds of steroids I have been on over the years, particularly in the recent months. I keep reading and hearing bad things about permanent damage resulting from steroids. At least my son was only on them once for 5 days.

 

I am taking microbiology over the summer. It's the last class I need to apply to nursing school and it's the one I am most intrigued and excited about. I am even buying a bio microscope to have at home. I have started slipping in school the last few weeks. Dumb mistakes, misreading, notes are jumbled and don't make sense, missing words, forgetting, etc. --- I'm pissed. I have waited years to go back to school, when it would be a good time/age for my son, etc. and I had a 3.91 gpa -- and haven't had one B so far. I think I am going to just miss an A- in my human physiology class (final is tomorrow) and it really bothers me. My husband tells me I am being to hard on myself, but I'm upset because I know I am capable of so much more and I feel like I'm being robbed!

 

I'm gonna have my pity party for another day or two, and then I'm pulling out my stubborn gene and start getting to work on this monster. Maybe this will turn out to be a blessing in disguise. Either way, we are going to beat it --- or I'll at least die trying.

Edited May 8, 2012 by fightingmom

[fightingmom]

Interesting that we talked about cycling. Four weeks to the day today, my son had another rage. I know this because it started the day before we had our appt. in CT last month at Dr. B and I had even posted about how I didn't think I'd even be able to get him in the car to get there. Things have been pretty smooth sailing for the last 4 weeks with the addition of Zith to the Augmentin. I saw that blip around 2-2 1/2 weeks, but it was mild in comparison. This morning he was rather argumentative and screamed at me on the way to school to the point I had even pulled over and told him to get out and walk (we live on the same street as school but I drop him on my way to get coffee in the morning). He came home today looking for a fight and parked himself outside my office door to scream and yell and call me swear words again, then he pounded on my door again. I haven't seen this for a month (though this was much more mild, as it didn't last nearly as long). Still... WTF? Could Lyme or coinfections possibly cause him to have rages/anger outbursts in cycles?

 

P.S.

I swear this kid is determined to keep me from passing my finals. He's always right on schedule with our exams!

Edited May 8, 2012 by fightingmom

[JuliaFaith]

Something you might try immediately to help yourself with fatigue is the following detox drink.

 

1. 1 oz. Aleo Vera (a lot of Bs, Zinc, E, Folic Acid, etc)

2. Juice of one lemon (detoxing/alkalizing)

3. Chorophyll Drops as directed on bottle (helps regenerate/oxygenate red blood cells)

4. Vitamineral Green by Health Force as tolerated (many anti-inflammatory green foods)

5. Enough water to fill glass and tolerate taste. Although I crave the drink and think it tastes great

 

This particular drink is very alkalizing and will immediately help combat any bacteria's in the gut. I'd also add 1/4 cup bentonite liquid (increase amount when you can tolerate) at bedtime 2 hours away from any supplements and antibiotics if possible.

Love this receipe! So many things that bodies need right now. My ds and dh both take the Chlorella by Health Force (green food) and it tests really well and is a great detox. They take 20 tabs 3xday 30 min. before meals along with 3 capsules (3,000 mg) of salmon oil. This helped get my husband on the way to detoxing before he even went to see the doctor. Just had chlorestrol level checked and it is so low that the doctor does not want it to get any lower, and this is after years of high cholestrol!

[fightingmom]

Julia,

That's pretty impressive -- glad your husbands cholesterol is down!

[Orion]

Could Lyme or coinfections possibly cause him to have rages/anger outbursts in cycles?

 

Yes. Rages are also associated with Bartonella.

[fightingmom]

Could Lyme or coinfections possibly cause him to have rages/anger outbursts in cycles?

 

Yes. Rages are also associated with Bartonella.

 

Thank you!!! I was diagnosed with Bartonella at our visit on Friday -- he was suggesting it based on symptoms for both my son and I, but I showed him these dark stretch marks on my thighs and he said it was the Bartonella rash. Great...add another to the load! Actually, I feel like I'm hot on the trail at this point - my pity party is long over - and I'm ready to get my son and I well, for once!