posted
I feel like I am totally lost in this Lyme & Co. maze.
I spent $900 on the Spiro Stat test -- PCR testing for about a zillion different organisms -- and the PA just told me it all came back negative. I don't go in until Monday so I can't discuss with my doctor until then.
At this point I have had a fairly positive Western Blot (last spring, Igenex), and a Metametrix stool test that came back with the vague "parasite present, taxonomy unknown" result. Other than that everything has been negative. I am so confused.
I have had years of endocrine dysfunction, adrenal fatigue, on and off night sweats, nausea, "off balance" feeling, poor appetite, etc. I grew up in Chester County, PA, so a totally endemic area... both parents have Lyme (under control now) and sister likely does too.
I just do not know what to do. I am SO confused. I am tired of spending money on these tests and I am wondering if I really even have something at this point, or if my problems are all hormonal.
The most troubling thing is my eye problems for the past two years that are getting worse not better. I have "splotches" in a few places in my peripheral vision, used to be left eye only, now in both eyes. Not floaters.
I was really hoping for a positive bartonella result so I would have something to blame the eye problems on.
I am going to post last spring's WB results here as I am kind of desperate for some feedback. My doctor is SO focused on detox and nutrition, which I know is important stuff but I feel like I don't have a real sense of direction anymore in terms of treatment. I'm taking doxy (200 mg per day), but what for??
And what is going on with my eyes?!
Here are the igenex results:
IGM:
31 ++ 34 IND 39 IND 41 ++ 58 + 83-93 IND
IGG:
23-25 IND 39 IND 41 ++ 58 +
...All I have had in terms of treatment is 2 months of biaxin which MIGHT have helped a tiny bit but nothing substantial, and now I'm on my 3rd week of doxy. The biaxin was last spring so I had a huge break in treatment.
I'm just trying to find some direction here... I really don't know what to do, what to focus on. Parasites? Treating Lyme? Bart? Herbs or pharmaceuticals?
At a loss!!
Sorry for the dismal post and thank you for reading this far!
EDITED TO ADD: I've had two eye exams with dilation and the doc said my eyes look normal. Also had a normal visual field test, and normal MRI last spring.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
A negative PCR means there was no pathogen in the blooddrops you have sent in.
A positive PCR is a 100 % proof you have the pathogen, but the negative is no proof you are not having the pathogen.
Treat the ( disseminated)parasites first, also get tested for cpn, it does the same signs as bartonella.
Most doctors treat with a negative PCR, continue your treatment.
Posts: 1834 | From US | Registered: Oct 2008
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You have weak positives on two extremely important bands... 39 and 83-93 .. and then you have other lyme specific bands as well. With symptoms (I'm sure you have) you NEED TO BE TREATED.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
My son has had several positive WB's from Igenex as well as a positive babesia duncani from Quest Labs. He came back negative on the Spirostat tests.
I'm not sure they are reliable.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
With regard to your eye problems have you ever done IV? It's the most effective at getting up into the brain past the BBB and into the eyes as well.
If you have had a positive test then you need to keep on treating. May be it's time for a switch in LLMD's?
None of the tests are 100% reliable even with Igenex you could have lyme and co's and it may not show up thou the chances of detecting it are hugely better.
Why even spend more money on more tests. Treat for bartonella and see if you respond to the treatment. That is the only way to know. It makes no sense to wait for a positive test, as you may never get one even if you have it.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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When you say to treat the disseminated parasites first, are you referring to whatever the metametrix test picked up or something else?
I am going to ask my doc if I can start on the black walnut/wormwood/clove combo next week, but I am under the impression that that doesn't address amoebas/protozoa, and that there may be amoebic or protozoan component to my illness.
I guess I should just stay on the doxy, it just feels like a crapshoot, I can't tell if it's hitting anything or not... I feel like I am totally in the dark as far as what infections I need to be treating.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Are you on mono therapy?
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Yes, I am. My doc as far as I can see is not a fan of combos unless someone is "really" sick.
I do know of another doc who treats with combos but he is less well versed in the natural/alternative stuff.
I am considering getting a second opinion from him.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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posted
Oh wow, a whole bunch of replies just showed up that I didn't see before -- let give me a minute to catch up! and THANK YOU!
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Given what you described and especially the problems with your eyes you need more than mono therapy. IMO, mono therapy is a waste of time. Are you on a cyst buster. Doesn't sound like it.
IV with orals would be best way to go to get your eye problems under control.
Who are you seeing. PM me. Perhaps, I can help.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
You sound really sick and if it's affecting your eyes that indicates neurological involvement.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Ok -- abxnomore, I have not done IV, but I have wondered if I should based on the eye issues. Naturally I am scared to go that route. Also, I don't know for certain that lyme is causing my eye problems (but so far can find no explanation for them).
I think I will make another appt with that other LLMD. Dr. P in CA.
Mary, that is really interesting about your son and makes me cringe thinking I just wasted $900 on that Spiro Stat test. Ugh.
RE: IV's -- I am allergic to penicillin, sulfas, cephs -- is IV still an option for me? I do well with macrolides and tetras so maybe zith, or IV doxy?
You all have no idea how thankful I am to be able to pose these questions here and get feedback from others who have been down a similar road.
I do think it's odd that my doc isn't treating more aggressively based on my WB from last spring.
He has said things to the effect of (paraphrasing) "your body will clear the lyme by itself if you detox the heavy metals, get your vitamin d and iodine levels up, etc" -- things of that nature.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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posted
Well I think you all have convinced me. I will call on Monday to make an appointment with the other LLMD near me for a second opinion.
Lymetoo, I think my doc has partially convinced me that either A) Lyme isn't really the problem, or B) the reason I'm not 100% is because I've been lax with my supplementing/lifestyle stuff.
I have heard that he used to treat more aggressively but doesn't anymore. I also know someone who has really done fabulously well with him.... but she got him to give her a PICC line.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I just PMed you. Place a new post in "Seeking". The California folks come along later due to the time difference.
Don't just pick any LLMD. Do you homework and get as much feedback as you can. I sent you some contacts.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Doxy should get a cyst buster and if you are thinking you have amoeba, protozoa so flagyl or tinidazole normally are prescribed by most docs. Doxy also helps killing parasites - curezone.com
I would do this for two weeks and then start parasite treatment slowly. But this is my personal opinion.
I am not sure what can kill disseminated parasites best.
The tests are not reliable and also not the one you did. Just treat starting with less harmless meds and then stronger ones. I do not like strong herxes. Also eye problems and too much die off is not good, can cause strokes and blockages.
Posts: 1834 | From US | Registered: Oct 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
....allergic to penicillin, sulfas, cephs --
allergies normally get better after parasite cleanse, so wait till after that with IVs
Posts: 1834 | From US | Registered: Oct 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
She needs a good LLMD who will treat her appropriately. 200mg of doxy is unacceptable.
Yes she could have parasites but without a good LLMD she's not going to make any progress.
I hope you followed the leads I sent you about how to go about finding a good one. There are lots of good ones in CA. Sk8ter thanks for offering her your help.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I think Sk8ter will have given you good feedback about doctors in your area!
You have a positive IGeneX test - it shows Lyme.
Off-and-on night sweats may be babesia.
You haven't had anywhere enough abx, let alone any other kind of treatment.
I know we're all different, but I've been able to stop all Lyme eye symptoms by drinking mangosteen juice, an anti-inflammatory antioxidant juice.
There are lots of brands in healthfood stores and online. I like the Ultra one (from Trace Minerals) and Mango-Xan. If you try it, go slowly and drink water also, as it can be powerful.
Before trying the juice, I had just been to a neuro-opthalmologist who had run all his tests and pronounced me normal, even though he had to anesthetize my eyes for me to be able to look at light!
We're like a zebra in a land of horses, if that makes any sense to you - in other words, we don't fit normal medicine's testing.
It takes patience to find the remedies that are going to work for you.
Posts: 13116 | From San Francisco | Registered: May 2006
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Abxnomore, thank you for your message earlier and yes, I have a plan for a second opinion, and if that doesn't go well I have 2 more docs lined up who I can try out. I'm going to see Dr. P first since he takes my insurance.
I'm a grad student, just got married in October and we don't have the money to do out of pocket treatment at this point without asking family/parents for financial assistance (which I'm trying not to do, but will if it becomes absolutely necessary). So, fingers crossed that I'll have some luck with Dr. P.
Just hearing all of you express such dismay at the low doses I've been prescribed makes me feel a lot better about things. I feel less crazy. And more hopeful.
I know that I was on a low dose of Biaxin last spring, too -- only 500 mg per day. I am small (110 lbs), but still.
Robin, I have tried mangosteen before to no avail. I think my problems with my eyes are more than an antioxidant is going to be able to fix, at this point. I am taking bilberry, lutein, and turmeric -- figure it can't hurt. I will continue with those since I tolerate them fine.
I am glad the mangosteen worked for you -- you are very fortunate to have found something that cleared up your eye stuff so easily!
Honestly reading all of your replies makes me want to cry! I feel like I've been at a dead end lately, just totally confused about what is wrong with me and how I should be approaching treatment/healing.
I'm thinking that given my abx allergies maybe I should try a macrolide/tetra combo with flagyl? That seems like one of the more comprehensive combos that doesn't require any of the stuff I'm allergic to. I would like to try something like this at full dose and see if it helps the visual problems. If no progress within a reasonable amount of time, I suppose I will move on to seeking IV.
I want to do the parasite herbs but I'm not going to delay abx treatment in favor of that. So hopefully my doctor will give me the go ahead to start those on top of the abx.
Thanks again to you all, you really have no idea how helpful this feedback is.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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posted
There is a new LLMD ophthalmologist in LA now I will PM her info.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
lajamur, the most important thing is the LLMD and the abx and then add the parasite cleanse whenever you can or even slowly at the same time. No reason to be desparate at all. You just need to treat and do intelligent choices.
Posts: 1834 | From US | Registered: Oct 2008
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