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IGeneX results, Dr said no lyme...

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Posted 10/23/2013 3:05 PM (GMT 0)

I just got my results back from IGeneX, via my chiro. I'm this chiro's first lyme test patient, and he has no idea what he's talking about. He stated I do not have lyme, and need to start looking at what IS wrong, like fibro. He has NO idea what he's talking about...

Here's the lab results...anyone care to give me an idea if I really DON'T have Lyme?

IGENEx IGM Results: Positive

CDC/NYS Results: Negative

18 kDA +

31 kDa ++

39 kDa IND

41 kDa +

58 kDa +

83- 93 kDa +

(rest of the #'s are -)

IGENEX IGG Results: Negative

CDC/NYS Results: Negative

39 kDa IND

41 kDa +

58 kDa +

(rest of the #'s are -)

What do you think? This dr didn't even want to entertain all my numerous, and debilitating physical/emotion/mental issues. It's all fibro and as he thinks, in my head.

Posted 10/23/2013 3:47 PM (GMT 0)
Even if it was fibro why would that construed to be in your head. Can you find a LLMD ?
Posted 10/23/2013 3:53 PM (GMT 0)
Well, in case you didn't know this yet, I sure don't mind contradicting a doc!! turn LOL!

According to this site,www.anapsid.org/cnd/diffdx/wb.html, and this site, which goes into further detail, www.reocities.com/HotSprings/Oasis/6455/western-blot.txt - these bands are specific to Lyme - they will only react if you have that one strain of Lyme that the CDC is looking for- that you are showing positives for:

31 - Osp A (Outer surface protein 'A')

39 - BmpA (Bacterial membrane protein 'A')

83

93

Both 41 and 18 means that the tail end of the spirochete (a type of bacteria like Lyme & syphilis) were found, but they can cross react with other spirochetal infections.

A positive reaction to Band 58 is suspected to be caused by a different strain (B. Hermsii) of Lyme that causes Relapsing Fever sickness.

Combined with your symptoms, there's little doubt that you have Lyme, you just need to find an doctor that is educated enough on the subject to understand this!
Posted 10/23/2013 6:39 PM (GMT 0)
It says right on there Igenex positive. That is basically there way of stating the criteria for CDC are too narrow. Even to test positive for Igenex you need 4 bands and at least one has to be specific to lyme.

My lyme dr took insurance although he did not take mine. Also many herbal schools have clinics that have low or pay as you can services. I have had good luck looking into that for people.
Posted 10/23/2013 10:10 PM (GMT 0)
Most of us here can really relate to being called a liar - or at least treated as if we were - and being told we are making this stuff up. Many of us have even been told that we need psychiatric help, not antiboitics.

Surely we can get you some help!! Try these things below. Once you get to a doc, I can give you a list of ways to help pay for prescriptions. Herbs work just as well and are less expensive usually. As Opugirl said though, you can see if there is a herbal school near you that you can go to, or maybe find a Holistic doc that isn't asking for much money to see you? It's worth checking on!!

Lyme-tap
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program offered by Ferndale Foundation in coordination with Lyme Patients Assistance Group to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need.
www.lymetap.com/lyme-disease-financial-assitance

Clinic of Angels
Provides treatment funds to the uninsured or those insured but denied treatment coverage. Financial assistance for treatment of the following diseases: Lyme Disease; Neurological Illness; Chronic Fatigue Syndrome; Fibromyalgia Syndrome; ALS (Lou Gehrig’s Disease); Multiple Sclerosis. See financial application form.
clinicofangels.org/application-for-assistance/
Home page.
www.clinicofangels.org/


LymeAid 4 Kids Fund
The fund is for children who do not have/receive insurance coverage for Lyme disease treatment for children and have economic difficulties.
www.lymediseaseassociation.org/index.php?option=com_content&view=
article&id=592&Itemid=493
Posted 10/24/2013 8:18 AM (GMT 0)
In A Cocoon,

First of all, I would say: don't go to that chiro anymore, he has no clue what he is doing and has no experience whatsoever. I don't think he has any right or knowledge to 'un'diagnose you.

The 'event' of getting a diagnosis is not something light. Please keep in mind that it is an event with a huge impact. On one side, you kind of feel obliged to be 'happy', especially since you have been ill for so long. On the other side, you feel lost (with a chiro like that, giving you no support), angry also because you feel like you have been let down by people and the system that would not even acknowledge that you have a real health problem.

It took me months to get rid of those mixed feelings... rolleyes

Just take a few days to find yourself again, relax and try to shut down that huge wave of thoughts haunting you

Then have a look into the info that our dearest Traveler posted. Like she said, there are alternatives like the herbal protocols (like Buhner's Protocol). It is very affordable and it works. You WILL be able to make the best of what you can get.

You can save lots of money prospecting online shops. My husband lost his job last year due to the crisis, and could not find one until now, no matter how hard he/we tried. I was forced to say to my dr: this month no expensive testing, no this and no that. I was forced to continue to work although I'm not well enough for that. But we are a strong species. Keep that in mind. You will have the intuitive urge to get better now that you know what is going on with you.

 

Posted 10/24/2013 3:44 PM (GMT 0)
I agree with Marie whole-heartedly!

Take the time to re-group, but remember all is NOT lost! There are still ways for you to heal, whether you choose to heal with abx or with herbals.

AND...you have so many people here on this forum ready and wanting to help you find ways for you to heal!! You really aren't alone in this!
Posted 10/24/2013 8:05 PM (GMT 0)
Again, thank you for all the help and supportive encouragement. My lovely, caring daughter came over today to sit and discuss all of this. She has offered, and I tearfully accepted, to be my "health advocate," and go with me to any meetings/appts, and to keep detailed records of such, so I don't have to miss things. This is the best news I've gotten in a long time.

I also am praying that her involvement will help lessen my fiance's sense of 'load' and maybe start him down a path to feeling differently about this situation, this disease, and me. As my kiddo says, "We'll do this one day at a time, Mom. We'll do this together."

Wow, what a sweetheart.

Again, thanks to all for your help and support.
Posted 10/24/2013 9:45 PM (GMT 0)
Yep!! What a sweetheart of a daughter - she sounds just like mine did when I felt the way you did earlier. It's amazing that we can have such wonderful children sometimes.

Mine stepped in when I had a period of severe paranoia set in on me. I couldn't explain what happened or why I suddenly had all this paranoia, but it hit hard. I just knew that everyone was out to "get me" - but I couldn't even explain what I meant by "get me" other than it had to be some kind of physical harm. And I meant everyone too - even my hubby. I couldn't sleep because of these overwhelming feelings either.

She took 2 days off from work (she's a Biologist so that's not very easy) in the middle of the week and made a bee line to the house once my hubby called her and told her I was "loosing it", and I was. She and I have always had a very close relationship fortunately because it took every ounce of trust that I had in her to believe her, but she promised me that she wouldn't let anyone 'get me' and she talked me down. She then sat up with me most of the night talking trying to unravel all of that and convinced me to take a nap. I slept for 10 hours, but she was there, as promised, when I woke. We spent the weekend together and I was stable enough once again to be able to let her go back home.

I seriously don't know what I would do without her by my side even now. She's never more than a phone call away, and can be here so quickly if I truly need her. I pray that I will never need her like that again, but if I do, I have no doubt that she will be there for me.

So please, allow your most wonderful daughter to help you through this. It's truly amazing!

If you believe that it was just an overload for your fiance and nothing more, then it's easy to understand how that can happen. If all he needed was some help in helping you, then the help your daughter is offering should help him greatly. Do you have any other children that could be available to come give you a hand for a while? They could come over to help you do cleaning, laundry or any number of other things to help lighten your load.

Above all, hang in there!! You definitely want to heal so that you can your daughter can have some wonderful get-aways together later!!
Posted 10/26/2013 2:02 AM (GMT 0)
Can anyone give me an idea of Igenex testing costs?

I was diagnosed with Lyme 7 years ago by one of the
leading LLD ilads doctor but still have no positive
tests.
Sick and frustrated and on Azithromycin.
Posted 10/26/2013 6:41 AM (GMT 0)
I too feel your pain in a cocoon. I have been sick for 20 yrs and just now been diagnosed with lyme disease. I was told I had every thing under the sun.

lately, I have grieved and I have just shut down like you. I am on disability and I am married but not in a happy marriage. I have isolated myself because no one understands what has happened. and I have not been able to make the effort to explain in detail. all I can do is lie around the house, sick, and think about all I have loss lately. My family thinks I am mentally ill like my mother. she was a paranoid schizophrenic who had a frontal lobotomy. so when I got sick, and started to deterioate, I was labeled like her. I feel like the black sheep in the family. many days I just wish I would die, and get this over with. but then I try to hold on and tell myself I can get over this.

sorry to go on a pity party. but I started rifampin and azithromycin 2 weeks ago, and I am ill more so, know I am in a herx

Hang in there, I am trying too. My understanding there is like traveler posted sites that offer assitance for meds and treatment. my igenex test was covered by medicare which is the insurance I have now. I was surprised it was covered.
Posted 10/26/2013 2:34 PM (GMT 0)
Oh, and to all who have been here supporting me....

With my daughter stepping up to support me through this, my fiance has done a 180. We had a long talk and he is again on board. He stated that with my 'shutting down,' he saw me 'giving up,' and he followed suit. I think that all of this through the past 5 years had taken it's toll on him, as this disease does on all those in our lives. Thankfully, he is a really good man, and it just took some time, some outside help, and a lot of discussion, for him to begin to feel there is hope. Because, there is hope.

My situation hasn't changed, I'm still looking at all the confusing and iffy stuff in my future concerning dr's, meds, costs, etc. What has changed is the rally of support, and THAT has made ALL the difference.

May all of us, and all those who are in our lives, be strengthened together with love, and may LD be divided away from us. Here is to the healing of our bodies, hearts, minds and spirits.
Posted 10/26/2013 9:14 PM (GMT 0)
For your fiance beginning to come around:
Woo hoo!! Congratulations!!! Happy Dance time!!! smilewinkgrin

I'm so happy that he has seen that you haven't given up, you were just at the end of your rope and didn't know where to turn! Fortunately, you came here and asked, and several reached out to you. What I love about this forum and why I'm always calling it a community! Because we are so much more than just a forum!

May your fiance continue to believe in you and may you continue to believe in you!!!
((((hugs))))
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