What was everyone else's results?

Now that I've got my Igenex results in hand that look postive, I'm still a bit hesitant.  I don't know why.... my symptoms fit lyme perfectly and I've had tick bites and much exposure, but I'm still a bit skeptical.  

I was wondering if everyone here who is dx'd could post their results with which bands positve and by what lab?  And also how you've responded to treatment.

I'm gonna make an appt next week with the lyme dr and see what he thinks.  I hope I can get on a treatment regiment ASAP.  I'm a bit nervous about talking to my GP about this, as she blew off my results.  So I'm thinking if i see the LLMD and he def says it's lyme he can direct her to help with treatment.  I think she just doesn't know.  I do know however that she does believe in chronic lyme because she told me that if it was chronic lyme they treat with IV Rocephin... so she must know something.  That's good.

Anyways I'm curious to compare everyones results and etc....  

Thanks.
  

[cindy903]

Seems to me that if it's chronic lyme disease and it's really bad, antibiotics are used to palliate the symptoms (not cure).  Some find that they get off of the antibiotics and the symptoms come roaring back. It s a vicious cycle. But if you're willing to risk the side effects-- both known and unknown and everyone's different -- you may feel better on open-ended antibiotics. It's controverial so the only doctors who will comply with a patient's request for this treatment are what we call LLMDs.

Good luck with your decision. And I'm glad you're thinking about it hard as antibiotic therapy for chronic lyme is something where you will have to be prepared to be on it for a while. Folks here have been on it for years to good effect, but it's a decision only you can make for yourself.

[SOONERMOM]

3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

Even with these results, I was still told that I didn't have lyme disease.  If you have extra money and want more answers, there is a band #31 confirmation test that IgeneX can run on the blood that they did your WB on (they save it for so long).  This tells if it is from lyme or not(like EBV).  Usually, people just get it run if band 31 is the only one to turn up, and you had more but I thought I would throw it out there.

It seems to me that a lot of people with a big response to band 31 (that I met on another forum) usually have mostly neuro symptoms (and brain lesions).  This antibody to OspA has been shown to attack the myelin that surrounds the nerves in the CNS and PNS.  My LLMD has told me that my "theory" about people with a high resonse to band 31 is interesting, but he says that the bacteria changes around so much that it might not be true.  I guess he trained under Dr. Masters and he had tested someone daily for a month and every test was different.

So anyway, here's my input.  A regular doctor isn't going to treat you or treat you long enough to see if you improve.  An LLMD will treat you and I feel it is definitely worth a shot considering  your WB and your symptoms. (and because we lived in the same area of the same city when we became sick)  I don't think I could have been "positive" enough for anyone here to diagnose me.   My GP pretty much treats me like a nut case now and has recently told me that it is a "stretch" to think that I have chronic lyme.  He doesn't have to walk in my shoes and doesn't have a clue!

Unfortunately, it isn't some tidy diagnosis.  You can choose to try treatment and see if it helps, that's all any of us can do.  My LLMD says that if you have one positive significant band (which you do) then 97% of those people respond to abx.

I  would make an appt now, because there is probably a long waiting list.  I hope some of this helped, I know how you feel.  I had all these positive bands, and I still wasn't "sure".  If you can get some of your life back with abx it would be great!
Stacey

[skarey]

If it is lyme I really don't have a choice than to take long term abx.  Right?  What happens if I don't do treatment?  Won't the lyme just get worse and worse?  Now I'm scared and worried.  I always thought Lyme was treatable...and curable....  So does my pos bands at 31 indicate chronic lyme?  Neuro Lyme?   Alot of my symptoms are neurological in nature, but I have no brain or spinal lesions.  Will it keep progressing to the point where I can develop these lesions.  Or will treatment delay this?   I know I have a lot of questions, but it is scary.  Now I'm in  bit of panic mode...

Thanks everyone.

[wonko]

I was CDC negative for both IgG and IgM.  I was IgG positive by Igenex standards.

IgM:  41 +

IgG:  39 +, 41 +++

I am not far enough along in treatment to say that I am cured, but there ARE success stories and not everyone remains on open-ended antibiotics.  However, I would accept that fate before I would accept the low quality of life that I'd have with no treatment.

From what I have read, there are more Lyme patients with neuro symptoms without brain lesions than with.  I don't know (and I honestly don't think that ANYONE knows) how long it may take to develop them.  Some speculate that Lyme-induced brain lesions may improve with treatment.  Others say that untreated Lyme can trigger autoimmune responses that will cause lesions.  Unfortunately, a lot more research is required for us to know what these bugs are doing to our brains.

Delaying treatment will allow the Lyme to further spread.  The longer it does untreated, the longer and more complicated your treatment may be.  And remember that Lyme is systemic, ANY part of your body, not just your CNS, is at risk.  

Don't panic, but don't forget that you are at the wheel and in charge of your care and treatment.  Most of us need to fight to get what we have.

[Cheri21157]

I had test done by IGENEX and here are my results
CDC & Igenex Negative
IGG
**41 +
58+
the rest negative
IGM
18 +
**41 +
**31 IND
**34 IND
the rest negative

I saw my pcp and she told me that I do not have Lyme. This is so confusing, who do you go with your dr or other people who have the same symptoms and seem to know more about lyme then the regular drs. I can"t find a llmd in my area to even go talk to about my results. Is doxy the best medicine to be on or can you be put on other meds?
Cheri

[wonko]

You're not alone in feeling confused and pressured over the polarized views surrounding Lyme disease.  It's a scary place to be and I honestly don't think either side knows enough to have the final word yet.  Patients are sadly caught in the middle.  I just posted on another thread the advice to find the online trailer to the documentary "Under Our Skin."  It's a 2.5 minute glimpse into this mess, hopefully it will show you that you aren't alone.

I think it is good to be aware of the conflict regardless of whether or not you "believe" in chronic Lyme.

Also, to find an LLMD, try an internet search of "how to find an LLMD" and you will find pages that offer advice and sites that are dedicated to helping people find doctors.  Also check out the ILADS website, you may be able to learn more about what to look for in a doctor there.

[patsy10]

My doctor was only interested in IgM so this is all that was drawn.

30+
39 IND
41 IND
Remainder negative

[JackieCalifornia]

I think I understand how you are feeling.  I was in that spot too, after I was diagnosed with Lyme and babesiosis.  I think I got bit in 2004, and was low level sickly and tired on and off.  My dr just shrugged, waiting for something to get worse.  I was functioning at about 2/3 capacity day to day.

Then I must have gotten bit again in 2006, tho I never had a rash or tick either time.  This time, I went down hill very fast and very hard, with severe neuro impairment.  I was diagnosed in early 2007 and given abx prescriptions.  

What did I do then?  Nothing.  I didn't begin the abx until late 2007, a full six months after finding an LLMD and getting documented diagnosis (sorry, can't find the old test results right now).

Why did I wait?  I was afraid, and I was barely functioning as it was -- I had read about Herxing and was afraid I would be totally bedridden.  I had neuro Lyme plus the babesia, which is a little h*ll of its own, and I simply couldn't think straight.  I figured 20% of me was better than 0% of me.  

Then I ran out of excuses.  All the family events that I had to be conscious for were over, and it was time.  So finally, I started on the meds -- I have had some problems with the meds, which happens but is not always the result, and my body has always been easily wacked out by medications, alcohol and even caffeine.  

I've had to change Lyme meds along the way because I didn't tolerate some of them well, but I am now operating at between 90 and 100% these days.  I have been off the meds for a while due to a complication, but will be going back on them.  I think I am probably an example of a worst case scenario; many people have no or few problems with the meds.  I do not however regret AT ALL having taken the meds.

The biggest obstacle for me in beginning treatment was fear and anxiety -- which are normal -- but the levels of fear and anxiety produced by Lyme are over the top, and it's something to try to factor in to your thinking:  

"Okay, I'm really scared, but what are the decision points here? I have a serious illness messing up my life for which there is a treatment that can sometimes cause problems.  

"If I don't get treated, the disease will not go away by itself, and it is debilitating now and may get worse over time.

"If I do get treated, there are risks of side effects from the meds, but there are different meds to switch to if I need to, and I will watch carefully for anything not going right and see the dr right away."

Fear and anxiety are normal, and additional fear and anxiety are also part of Lyme.  Been there, done that.  Life is better after the meds.  No regrets here.

Big hug!

[cindy903]

I'm glad you're taking this decision seriously. It's your health and your body -- you should and must go into this informed as much as you can be.

If you go the LLMD route as everyone here on this board advocates then make sure you have a good rapport with the doctor Also, make sure there's a plan that you both agree on -- with the doctor guiding it with input from you and how your doing. The doctor should be able to articulate what he/she is doing and why and not just say "here try this and that" and be off. You are not a human gunea pig.

Also, I have been reading about integrative medicine especially with unchartered waters like Lyme. You may want to explore that as well. It's important to know as much as you can. Lyme can be healed. If you go the LLMD route, please find a doctor who believes that it can be healed. Even if they say it's remission or whatever, find one who's aim is that. Most treatments involve antibiotics. But if you read the guidelines by dr b. you have to exercise to stay well.


Not sure where you live, but they say it's best to treat co-infections first and co-infections are more common in certain regions they are finding. Babs is treated with five months of mepron and I have no clue what they use for Bart.
Good luck and best of health to you