posted
james... I would not personally buy the mag product you posted. It contains calcium and calcium will deplete magnesium. Find one that is mag only.
As for your labs, Quest is useless unless it shows positive .. can't trust a negative.
MDL does not check for all possible bands as far as I remember. It's better than Quest though.
I can't read any of those. So is band 41 the only band that showed up?
regarding depression .. SAM-E and 5htp are two other OTC possibilities.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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posted
Test Babesia microti by Real-Time PCR Results Negative Reference/Units/Comments None
Test Ehrlichia chaffeenis (HME) & Anaplasma phagocytophila (HGE) by Real-Time PCR Results Negative (HGE,HME) Reference/Units/Comments HGE:Negative HME:Negative
Test Rickettsia rickettsii (RMSF) by Real-Time PCR Results Negative Reference/Units/Comments None
Test Babesia WA1 by Real-Time PCR Results Negative Reference/Units/Comments None
Test Lyme disease Western blot (IgM/IgG) Results IgMCDC Neg IgMAlt Neg IgGCDC Neg IgGalt Neg Reference/Units/Comments IgM: No bands present. IgG: 41. See attached report.
Test Bartonella henselae IgG/IgM by ELISA Results IgM Neg (Index=0.17) IgG Neg (Index=0.31) Reference/Units/Comments *IgM Index range: Neg: <=0.89, Equivocal: 0.90-1.10, Pos: >=1.11 *IgG Index range: Neg: <=0.89, Equivocal: 0.90-1.10, Pos: >=1.11
Test Lyme disease C6 Peptide by ELISA Results Neg (Index=0.13) Reference/Units/Comments *Index range: Neg <=0.90, Equivocal: 0.91-1.09, Pos: >=1.10
Test Anaplasma phagocytophilum IgG/IgM by IFA Results Negative Reference/Units/Comments None
I should add that this test was done at "Medical Diagnostic Laboratories L.L.C."
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You didn't include all your bartonella results. You have both an IgM and an IgG. List both.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Just did. Sorry, that whole thing was quite tedious.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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TF
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posted
In a post you made on Oct 15, you said: "The only thing is that there have actually been studies comparing St John's Wort to leading SSRI drugs (Paxil, Zoloff, etc) and St John's Wort actually outperformed them in clinical trials."
You then gave the following link when I asked to see the studies:
"Yet recent clinical trials have shown that St. John's wort works as well as Prozac, Zoloft and other leading antidepressant drugs for treating mild to moderate depression.
A study recently published in the April 18, 2001, Journal of the American Medical Association found the herb ineffective in treating severe depression. [1] It's important to note that St. John's wort has been indicated in the treatment of only mild to moderate depression--not severe depression--for which its efficacy has been well-demonstrated.
Pharmaceutical antidepressants are still the treatment of choice for severe depression."
Notice the title: Comparison of an extract of hypericum (LI 160) and sertraline in the treatment of depression: a double-blind, randomized pilot study.
Here is a definition for you:
Pilot study--a small-scale experiment or set of observations undertaken to decide how and whether to launch a full-scale project
So, if it has been proven that St. John's Wort equals Zoloft for mild to moderate depression, why is your website referencing just this pilot study--a very small study done 15 years ago.
I suggest you search the medical literature to see for yourself what it says about how useful Wort is in successfully treating this condition.
What has the last 15 years shown? Are there major studies that back up this pilot--studies using hundreds and hundreds of patients to test out this hypothesis?
Regarding your test results, I hope that you now are paying attention to the details of your MDL test. For example, do you see that you got 2 tests for bartonella--IgG and IgM.
Do you see that a score up to .99 is considered negative? Then, a range considered equivocal, and then a positive range.
Your two scores on these tests were .17 and .31
These are extremely low scores.
So, study your test results carefully and if you have questions about them, ask us here.
Read the website of MDL--the lab your lyme doctor used to test you. Read about the reputation of MDL as well.
Read about PCR testing. Read about the C6 Peptide test. Read about the coinfections babesiosis and bartonella focusing on the symptoms of these diseases. Lyme doctors call them "the big 3" because they are the 3 diseases that nearly every lyme patient has if they have been sick with lyme for at least a year.
Put all of the evidence together. Do not allow your mind to focus on one thing (like the positive band 41. Remember, my husband had that. It is 11 1/2 years since he got that result from Igenex--the best tick-borne disease lab in the nation. Still, he has never developed lyme disease. Gum disease can cause a positive on band 41.)
See what famous lyme doctors like Burrascano say is required to indicate a diagnosis of lyme disease--the symptoms, the medical history, results of the physical exam, and results of tests.
Here is Burrascano regarding the Western Blot lyme test:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic." (page 7)
Below this, he discusses PCR.
Hopefully, once you educate yourself, you can come to your own conclusion about the possibility that you have lyme disease. You may have to be treated for your anxiety/depression before you can do this analysis. I don't know. Can you be objective in your current state of mind? That means, treating ALL of the evidence equally, and not obsessing on one fact over the other 99 facts.
Posts: 9931 | From Maryland | Registered: Dec 2007
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The reason I'm worried is mainly because I'm concerned with Lyme being the cause of my anxiety/depression. If this is so, then wouldn't I have to cure the Lyme before I cure my anxiety/depression? Or would conventional means of treating depression be just as effective?
Also, the more I research band 41, the more I wonder. I haven't ever had a gum disease that I'm aware of, so I just don't know what else would cause that band to show up.
I'm not sure what other spirochetes I could have been exposed to, unless some of them come from common bacterial infections. This is why this worries me (coupled with my anxiety already).
I will certainly start researching more into these labs
TF
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Member # 14183
posted
Lyme doctors give patients Zoloft which is great for anxiety. In other words, they try to alleviate the patient's symptoms while they work on the cause. Regarding how well these meds work if the cause of the problem is lyme, all I can do is quote from a book "The Lyme Disease Solution" which is written by the lyme doctor who cured me.
This is what he says:
"If needed there are conventional medical approaches to depression that realy do work. I strongly recommend that you consider them as temporary ways to deal with the biochemical imbalances in your brain that can be caused by lyme and the TBDs. The following prescription medications, taken as directed under your doctor's supervision, can also be helpful in relieving depression:
Amitriptyline Cymbalta Lexapro (10-20 mg once per day). Lexapro is especially useful when chronic anxiety is also present. Paxil Wellbutrin Zoloft (25-100 mg once per day). This is the overall best-tolerated antidepressant drug in my practice and is the one that I most commonly prescribe. Most people prefer taking this medication at night." (pages 370-371, Chapter 8)
I have not included all that he says about the other meds. You can likely get the book from the library and a lot of it is also available on the Internet at:
Regarding band 41, the research may not be at a point where your question can be answered. Band 41 reacts to the flagella or "tail" of the organism. Many organisms have tails, evidently, which are used to propel the bacteria along and through blood, tissue, etc.
So, perhaps that question will have to be held in suspense. Suspend it up there with my husband's case. Maybe in 5 or 10 years, or 30 years, we will know more. Right now, there isn't much research into lyme testing going on. So, it could well be a long time before there is a definitive answer to your question about band 41.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, you and all of you others have been EXTREMELY thorough and helpful. More than I could have ever expected when I posted on an online forum, so I thank you all for that.
Now it's my turn. I'll do some extensive researching and will call Dr. G on Monday to get the detailed report sent to me, as well as ask her a couple of other questions.
I will post further questions here on this thread. I think at this point I will try to keep Lyme only in the back of my mind until I work further with my psychologist to see if there really is just a psychological cause for all my symptoms.
I will also "shop" for LLMDs. The most flexible one I found is about $500 for the visit and maybe even more for labs, which stinks but we'll see. I think I'd feel more comfortable after my second opinion and if I can get tested through IGENEX
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
From my short amount of researching, I've seen that many of my tests aren't the most reliable, especially PCR and ELISA.
However, apparently the MDL lab is pretty good, but they use these faulty techniques. This confuses me
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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sparkle7
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posted
I don't have time to read through everything here. I did read your initial querry, though.
Everything you say is valid. I have been going through this obscenity called "Lyme" for over 18 years or more. I understand what you are dealing with.
My tests were borderline. I had Lyme treatment & LLMDs, etc. None of the regular Lyme treatments helped me. I do think there are false positives and false negatives. This thing is really complicated & the doctors just don't know how to treat people. All they are doing is trying educated guesses as to what will work.
Celebrities and rich people spend thousands or millions if they can afford it & don't necessarily get well. You are not alone. Try not to obsess about it too much. There are things you can do to deal with anxiety and symptoms.
I prefer natural treatments but some people do well with drugs. Do what you can to try to get through it as best as you can.
Hopefully, you will find a cure but it's really complicated. You are not alone. Your question is valid & alot of people are dealing with this.
People on this message board are very understanding & have been through alot of "stuff". Try to keep going forward as best as you can.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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posted
PS - this probably is not "in you mind"... I ruled it out from the beginning when I saw a psychotherapist. Not saying what is valid for me is the same for everyone.
I do think there is something specific making people ill but the medical profession does not know exactly what it is.
Try not to stress too much. No one wants to deal with this crap but you just have to try to do the best you can with it. Look for things that help & don't get too stressed out.
I know it's beyond awful to have to deal with all this complicated "crap"... You can spend all your waking hours studying stuff & still not know what to do.
It's a personal thing. Try to find what helps you... Everyone is different.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Carol in PA
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quote:Originally posted by thatjames1130: ...until I work further with my psychologist to see if there really is just a psychological cause for all my symptoms.
. James, Muscle twitches are a symptom of low magnesium. Magnesium and fish oil have been shown to help anxiety and depression.
Taking these supplements is something you can do yourself, as I doubt the psychologist will suggest it.
Once the anxiety and depression have improved a bit, you'll be able to cope better with all the other crap.
Posts: 6950 | From Lancaster, PA | Registered: Feb 2004
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posted
Just wanted to get your guys opinions on this
So if I were to (hypothetically) take antibiotics for a month and not feel any sort of improvement or herx reactions, would it be reasonable to rule out Lyme?
Because if I know it's not Lyme, I'd like to move on and see what else could be causing all this.
I'm also gonna order some of that magnesium to see if that helps.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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I just wish there was a way to know for sure whether I do or do not have Lyme. I'm desparetly in need of peace of mind.
I know I could have it, but i know I could also not have it. I just feel like it's a downhill battle with this always going to be in the back of my mind unless I know for sure I do or don't have it.
I'm in need of certainty, or at least as close to certain as I can get. And I think that's actually the route of my anxiety, the fact that I can't find any certainty.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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quote:Originally posted by Lymetoo: Life is never certain.
That's true, lol. I've always been this way. Whenever my mind focuses on a problem, I can't get it to unfocus until I have a solution.
It's never really been a problem until now when I fear my health is at risk. Now it just gives me a ton of anxiety
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
So, I guess there really is no way to rule it out. But whats the closest I can come to ruling it out? I'm guessing the absense of improvement or a herx when taking antibiotics is the closest I can come?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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sparkle7
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posted
Some people here try something called ART. It's a kind of applied kineseology.
I think it's probably as accurate as lab testing but you have to find a good person or naturopathic physician to do it.
I took magnesium and it didn't help me all that much but what helps me may not help someone else & vise versa. It's not bad to take minerals or multi-vitimins and supplements but everyone is different. We all need different things.
One theory is that alot of people actually have Lyme but not everyone reacts to it or has symptoms. So, having a positive or negative test isn't always something as meaningful as we may think.
There's alot of trial & error involved. You just have to try things and see what helps.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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glm1111
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posted
I would check out the possibility that you may have a parasite infection since the CDC announced that over 60 million Americans are infected. Also check out www.humaworm.com/symptom list.
Anxiety is on that list as well as other symptoms you are expressing. If you are infected with Lyme and co, the ticks are also carrying parasites.
Steven Buhner just came out with a list of antiparasitics since he also realized this co-infection. Check out the PARASITE WARRIORS SUPPORT Thread on here as many with chronic Lyme are treating for this co-infection. I will bring it up for you.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sparkle7
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Hi Gael! Yes, I think everyone should do some anti-parasite treatments as a given. Most people think it's weird or we don't have parasites in America - which is not true.
I don't know why there are taboos against parasites in the US. We definitely have parasites here & they may be the reason alot of people have health problems.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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MichaelTampa
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posted
quote:Originally posted by thatjames1130: So, if I start taking antidepressants and they help, my depression isn't caused by Lyme?
I see the antidepressants as more or less a roulette. Hey, they may help, they may cause suicide, they may cause manic depression. Whether you have lyme or not, I would not read any reaction, good or bad, as indicative that anyone had lyme or not.
I see it very possible that in one study Zoloft would outperform StJohnsWort, then the reverse in another study. This could easily be affected by who is selected, how it is run, how results are measured, etc. All of this would mean nothing for any particular individual. In those studies, they are comparing large groups of people who have wildly different chemistries, no matter how well they might try to get a good selection.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
I just find the uncertainty of this disease maddening. I think tomorrow when I call Dr. G I'll ask to see if she can prescribe me antibiotics to see if I herx or get better.
That's really the only test I can think of other than spending hundreds on another LLMD
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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TF
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posted
If you ask her for antibiotics, come back and tell us what she says.
The other test you can do is to take Mag Tab SR and Zoloft. If you get well on these, and if you stay well, you have your answer.
If you have lyme, it will continue to progress without treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by TF: The other test you can do is to take Mag Tab SR and Zoloft. If you get well on these, and if you stay well, you have your answer.
If you have lyme, it will continue to progress without treatment
What exactly do you mean by this? If I stay better with these (magnesium and SSRI), it's not Lyme? I'm guessing "treatment" means antibiotics?
Is it possible for Lyme to only effect someone neurologically?
And yep, I ordered this magnesium today, and it should be here Wednesday.
Also, my GP prescribed Paxil a while ago, but I havent taken it yet. Is Zoloft and Paxil similar enough to where I can just take the Paxil?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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TF
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posted
Depression is a psychiatric (mental) disorder, not a neurological disorder.
If you get well on Mag Tab and Zoloft and stay better, then you don't have lyme.
If you have lyme, you won't stay better. Instead, you will eventually accumulate other symptoms and the only way to get rid of your lyme symptoms will be with treatment (antibiotics, or alternative treatments).
How did you decide on this particular magnesium product? It is NOT what Burrascano recommends.
Read this article on the neuro-psychiatric manifestations of lyme disease:
"The late neurologic symptoms consist primarily of a mild to severe encephalopathy, a polyneuropathy, and profound fatigue. This encephalopathy which is thought to occur in 9 of 10 patients with chronic neuroborreliosis is often characterized by subtle disturbances in mood, memory, and sleep (2). It is in ruling out subacute encephalopathy that psychiatrists will have their greatest diagnostic challenge, for these patients may be irritable, tearful, depressed, and have poor concentration and sleep. A diagnostic tip in favor of Lyme disease as the cause of the depression and irritability might be concomitant memory loss, word finding problems, or a concomitant polyneuropathy. The polyneuropathies, often demonstrable on electrophysiologic testing, include spinal or radicular pain, paresthesias, sensory loss, and/or lower motor neuron weakness."
Regarding Paxil, "The Lyme Disease Solution" says:
"Paxil is a good choice when depression is accompanied by panic and/or social anxiety. Weight gain may be a chronic problem with this antidepressant." (p. 371)
So, I would research Paxil if I were you. What symptoms it helps, the side effects of it, etc. Do you want to take something that will have you continually gaining weight? etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Also, anyone hear of houttuynia? Would this herb produce a herx reaction if I cant get the antibiotics from my Dr. G?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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TF
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Do you remember what I told you about Dr. G. on Oct. 14?
To be realistic, it is VERY unlikely that you will get any antibiotics out of her with your test results.
She requires a clearly positive lyme test before she will treat a person, based on the patient reports I have.
Regarding herxing, some people never herx. So, if you don't get a herx (from antibiotics, herbs, or whatever), you still will not be sure of anything.
The easiest, cheapest, and best thing for you to do is to ask your primary for Zoloft. (Zoloft fits your symptoms, etc.) He will give it to you with no problem.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Ellen101
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Its a tough one because there are so many symptoms of lyme that even those who may not have it begin to think they do. With the testing for many being inconclusive that makes it hard as well.
I had terrible twitching especially around my eyes. My LLNP thought it was definitely related to lyme. I was in treatment for over a year with various antibiotics and despite somethings getting slightly better the twitching did not and I felt worse. I decided to move on and switched to another LLNP who while considering lyme is also very open to other possibilities.
For me my thyroid seemed to be the issue as well as my gut. Getting on the right thyroid med as well as making major diet changes was the turning point.
Had I stayed with the same LLNP I have no doubt I would probably still be in treatment.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Interesting, I had my T3 T4 TSH tested which was apparently "normal" as well, but I wonder if their "normal" range is maybe a little low.
My testosterone is in their normal range too, but it's only 564 and I'm 20 years old so I feel like it should be higher
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
PLEASE get tested through IGENIX, I have seen too many false negatives through MDL, they don't test for all bands. your IGENIX test results will list all bands and the intensity result. If you are already positive for number 41 that is highly suspect, and we need a test that is specific for band 31 which IGENX has. Band 31 seems to be specific to your case and symptoms.
Posts: 532 | From Texas | Registered: Oct 2004
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Ellen101
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posted
How much $ would it be for the test if my insurance doesn't cover it?
And would I just bring the form in to the doc, have him fill it out, and then send the form to IGENEX?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
Hmmm. So would you recommend I get that test done, or visit an LLMD first?
Keep in mind, I'm really looking for some peace of mind. This whole thing is driving me crazy. I would get the Paxil to hopefully calm me down, but I don't want to do that before my psychologist diagnoses me with something.
I can live with the muscle twitching and occasional tingling of the extremities. But I cannot live with this mental issue
My neurologist called back and said my brain MRI looks normal with the exception of a small "venous anomaly" in the front of my brain that I "probably had since birth"
She said this is somewhat common and shouldn't be responsible for any symptoms.
Dr G's secretary also called me back regarding band 41 and the antibiotics. She said I only had "one band on band 41," and according to her this "means nothing". She also said she couldn't prescribe me the antibiotics without seeing and evaluating me again.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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glm1111
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posted
Google "Do SSRIs have antinfammatory properties? I did, and according to Pub Med, they do. I have a friend who was dx with Lyme and co and was put on a lot of SSRIs and is doing quite well and seems to be in remission.
He did do abx and Rife, salt/c and some other meds and was still sick. Of course, it takes a very competent Dr. and the right combo of meds. Personally, I would go with what makes me symptom free.
Going after Lyme and co can be brutal especially late stage. This is just and observation and you need to do what your intuition tells. I wish you the best.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
IGeneX claims their Western Blot is over 96% specific. That's a bold claim, could it be true?
I ordered a test kit and was also wondering if the two Western Blot tests would be good enough, or if I should order the complete panel, which includes two PCR tests.
The complete panel is over $400 but just the two western blots are $210. I'm on a budget, so obviously I'd like to do the cheapest option, but not if it won't satisfy me.
They also have some coinfection testing options, but that would obviously be more money.
Which tests are necessary for the lowest cost? Or, more important, would testing through IgeneX even be necessary considering I already tested with Medical Diagnostic Labs?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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That would be more affordable. I'm thinking if that comes back negative, or if it only shows band 41 like my MDL results, I should probably forget about Lyme.
Or maybe I can treat myself with known Lyme remedies to see if that helps.
I'd like to visit another LLMD, but they're just so expensive.
Hopefully I can get my pdoc to sign the IgeneX form
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
Coming to this thread late but my son also had only band 41 positive. Took him to a LLMD who after examining him and listening to his symptoms, agreed to treat him.
He started herxing immediately and is still herxing.
Posts: 848 | From Somewhere | Registered: Nov 2010
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What kind of symptoms was your son experiencing and how long ago did he begin treatment?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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