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» LymeNet Flash » Questions and Discussion » Medical Questions » How to tell if I DONT have Lyme disease? (Page 2)

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Author Topic: How to tell if I DONT have Lyme disease?
thatjames1130
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I would totally buy that book if I had the money. If not for me, then for my dad at least.

Little off topic, but I'm a college student still waiting on PA to pass their state budget so I can get the $1900 refund they promised me -_-

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TF
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Yes, Dr. G is very expensive. There are better, less expensive doctors.

I don't think many people with lyme could do all of the exercise you are doing. Not many at all. That is because the #1 lyme symptom (and babesiosis symptom) is this horrendous fatigue.

Generally, a lyme patient's endurance and energy is extremely limited. So, perhaps you just have depression.

If you take a good antidepressant (like Zoloft) and all of your symptoms go away, then you have diagnosed yourself.

And, you can stop the Zoloft any time you want to. You slowly taper down your dose and, if your symptoms don't come back, then you no longer need it.

But, if your symptoms start coming back as you taper down, then you stay on the Zoloft for a few more months and then try again.

If you are under a lot of stress, you may need the Zoloft for about 9 months. It helps restore the brain chemicals that can get too low when we are stressed for a long period.

Your primary doctor can prescribe it for you. It made me feel like my normal self! I loved it! And, I only needed it for 9 months.

I hope you can try this and all of your symptoms just disappear!!!

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thatjames1130
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I've also posted a question about where to get Lyme doctors, if anyone here is interested in helping.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=026315;p=0#000000

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Keebler
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-
I agree with TF about how your exercise pattern and tolerance is not typical for lyme.

I'd stop gluten before trying any Rx anti-depressant. Just going off gluten lifted years-long depression in my case.

I had many terrible experiences with side-effects from many different anti-depressant trials, even at low dose. Please first try a gluten-free diet.

Be sure you have enough protein and complex carbohydrates and good fat in your diet, too, and that you eat often enough.

You might connect with your local CELIAC support group for more detail on that.

As for that book, perhaps if you connect with your school library, they could get it for you to borrow.

or connect with your local lyme support group (even if you may not have lyme, it's a good book and will also help you better help your Dad).
-

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thatjames1130
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Thank you TF!

Could depression cause the twitching as well? I know anxiety could but I seem to have twitching all day long, not triggered by any thoughts or anxious feelings that I'm aware of.

I'm sort of afraid of anti-depressants for their side effects. How was your experience with Zoloft as far as side effects go?

I've been on St. Johns Wort for a couple of months now and I think it is helping, more than any other supplement I've tried, but I'm still not 100%. (Maybe like 70% better as far as my mental state goes).

My pdoc actually prescribed Paxil, but I didn't want to take it, just because I felt like she rushed into it too quickly.

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thatjames1130
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quote:
Originally posted by Keebler:
-
I agree with TF about how your exercise pattern and tolerance is not typical for lyme.

I'd stop gluten before trying any Rx anti-depressant. Just going off gluten lifted years-long depression in my case.
-

Yes, actually I tried a partial "eliminate diet". Three weeks ago, I cut out wheat/gluten, eggs, soy, and dairy. I already know I'm lactose intolerant so the dairy was an obvious one.

During the three weeks, I haven't really noticed an improvement in my mood. I felt a little slimmer with my stomach, but thats about it.

I slowly reintroduced gluten a week ago and havent noticed any psychological adverse effect. However, by the end of the week, after reintroducing everything, I have noticed a little bit of bloating going on, but still no other physical/psychological changes.

Twitching and my mild-moderate depression persisted unfortunately.

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TF
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Muscle twitching could be from low magnesium. The easy way to test this out is to buy some Mag-Tab SR by Niche on line and take one in a.m. and one in p.m.

You will notice a difference in about a week if the twitching is from low mag. Typical mag blood test will not show low mag. So, instead of asking for the $300 good magnesium test, order a bottle of Mag-Tab and test it out yourself.

This is the magnesium Burrascano recommends. It has helped many people that I know. Some had lyme and some didn't.

The Zoloft caused headache for me in the beginning. No other side effects. So, I started out slow with it. I took maybe 1/4 of a pill per day at first. This is a ridiculously small amount, but I have to do that due to the headaches.

People think they will not be their normal selves on antidepressants. Zoloft returned me to my normal self.

I understand being turned off by a doc quickly offering an antidepressant. I was offered them for 10 LONG years when my real problem was lyme disease!!!

St. John's wort is good for very mild irritability. It is not strong enough to take care of a depression. A depression is a lack of chemicals in the brain. Restore what the brain lacks and it will go back to normal.

So, if wort helps you, that is a sign that a good antidepressant will likely restore you to normal.

And, you don't become dependent on antidepressants. Zoloft does not cause weight gain or any other side effects. At least, it didn't for me and I had to take it 2 different times in my life. It was great both times!

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TF
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I took the Zoloft for anxiety once and for anxiety/depression once.
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Lymetoo
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Nearly everyone is low in magnesium.

--------------------
--Lymetutu--
Opinions, not medical advice!

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thatjames1130
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Thanks again TF,

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.

Idk what that means, I guess it means that in my mind, if wort doesn't do the trick 100%, I feel that no SSRI would.

I could be wrong though, as everybody is different. I might have to go down that road eventually and it's at least good to know that they're an option.

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thatjames1130
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Would this be a good supplement? It's a little more in my price range

http://www.amazon.com/MAGNESIUM-CHLORIDE-Delayed-Release-Magnesium-Supplement/dp/B00080CKBO

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TF
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St. John's wort didn't help me but Zoloft did.

Wort only helped me with very mild mood problems. But, it worked great for that. I loved it for that.

I can't believe wort outperformed Zoloft (because of the chemical problem in the brain when you are in a clinical depression. Wort can't address that physical need). I would like to see that study to figure out the flaw. Do you have the link?

I don't know anything about the magnesium you are asking about. Burrascano recommends Mag Tab SR and I know it works.

A 60 count bottle is $15.25. Enough for a 1 month trial. That is plenty to see if low mag is the cause of your twitching.

http://magtabsr.com/shop/

Or, don't bother trying to fix the twitching if you can't afford the good mag. Just get to your doctor and ask for a trial of Zoloft. That is an awful lot cheaper than going to a second lyme doctor. Try the cheap things first to see if they work.

You will spend big bucks going to another lyme doctor.

Here is Burrascano on mag:

"Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate ("Mag-tab SR", sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on "cal-mag", calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary." (page 28)

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MannaMe
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I would try omega 3 fish oil before an antidepressant!! If you aren't eating fish, or grassfed beef & chicken or milk & eggs from grassfed cows & chickens, you aren't getting enough omega 3's in your diet.

Our brains need good fats - we need to eat omaga 3's because our bodies can't make them.

Fish oil won't cause all the side effects that antidepressants can.

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thatjames1130
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http://www.chiro.org/nutrition/FULL/St_John's_Wort_Vs_Drugs.shtml

There's a link to a summary of the study's comparing wort to SSRIs

And yeah, I take fish oil 2x per day as well as eat vegititsrian fed eggs and fish like salmon 2x per week.

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thatjames1130
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So, if I start taking antidepressants and they help, my depression isn't caused by Lyme?
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TF
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We have to see your test results to try to help you answer these questions.

The tests will give us a better idea of whether or not this could be lyme.

Have you studied the symptom list in the Burrascano Guidelines?

http://www.lymenet.org/BurrGuide200810.pdf

See pages 9-11 and 26-27

Tell us all the symptoms you have from that list.

We know you don't have the characteristic severe lyme fatigue.

What has your psychologist/psychiatrist diagnosed you with?

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thatjames1130
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My symptoms from that list are as follows:

-Mild knee pain that comes and goes

-Twitching Moderate

-Mild Depression/Anxiety

- Mild Tingling (hasn't happened since July)

- Mild ringing in war (very rare)

My psychologist is still in the process of diagnosing me

Pain is never anywhere other than my knee. Sometimes my lower back hurts from sitting over a long period of time, but I attribute this to a small injury I sustained while doing deadlifts.

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Brussels
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When I was sick with lyme, I took pure powder Cats claw for about 2 whole years. Buhner's book was just released, and some of us here started taking his suggested herbs from Healing Lyme.

What I concluded was that ALMOST everyone with active Borrelia reacted in a way or another to cats claw.

it is cheap if you buy it bulk,a nd you just have to mix it to water and drink. Start slow.

If you see no herxes, no improvement, nothing, I think you may not have active Borrelia. It doesn't mean you do not have lyme, because with lyme disease, the pathogens take turns, sometimes you got more bart, others candida, other times it's some virus...

then you can have again Borrelia, activated, sometime later.

But I find the cats claw test inexpensive and without real side effects, if you can tolerate the herbs. It's just an idea, but that is what convinced some people I knew, that had lyme but were not sure about it.

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TF
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All we need from your primary is a copy of the Western Blot tests that he did--the actual test results that he received.

Notice that the above test results summarize your Western Blot by MDL. The summary says: You had no positive bands on the IgM and only band 41 positive on the IgG.

Then, it says "see attached report." You may have never gotten that report, but I would contact the lyme doctor's office and ask for it. It should be exactly what they have summarized, but the point is that you want your ACTUAL Western Blot test results, not a summary. You want to see the result for each band that was tested.

You don't know which bands they tested you for until you get the actual test results. We want to be sure that they tested for the important bands. Not all labs do.

So, your Western Blot through MDL looks just like my husband's and he does not have lyme, even though he had sex with me for the 10 years that I was sick with lyme but didn't yet have a diagnosis. That is a lot of sex.

That is why I had him tested. He only had a positive on band 41. That positive can be attributed to gum disease which he had in the past. So, your WB looks like a person's who does not have lyme.

Still, I would want my actual test results which they evidently sent to the lyme doctor.

You are also negative for all the coinfections that she tested you for. She ordered a number of tests for these, which is good. But, as we have said, you can't count on these being accurate, especially a PCR or ELISA.

It is EXTREMELY difficult to read these test results because the print is so small and not clear at all. I made an effort to do this, just to help you to understand your results.

If you want to retype exactly what you see, perhaps more people would be willing to chime in. This is really tough to read, even enlarging the print on my screen.

Regarding your list of symptoms, you are not naming the classic lyme symptoms. For example, from p. 26 of Burrascano:

"Migratory- first a knee will hurt, then over time this may lessen and the elbow or shoulder acts up, and later the joints calm down but headaches worsen."

"Tiredness and limited stamina- often is a strong need to rest or even nap in the afternoon, especially when the flushed face and elevated temperature appears."

"4-week cycles- Bb activity, and thus symptoms, wax and wane in a cycle that repeats roughly every four weeks. This cycle, if clear, can guide your treatments"

Does your knee pain occur in 4 week cycles? If not, have you had a doctor examine your knee? Perhaps a knee doctor can tell you why you sometimes get mild pain there.

I will wait to see the other Western Blot test results, but your very few mild symptoms and the fact that you exercise about 1 hour or more 5 days per week including running and weightlifting just does not sound like a typical lyme patient at all.

You may just have a mild knee problem and have depression/anxiety from stress.

You really should get the magnesium Burrascano suggests and see if the twitches go away using it for a few weeks.

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thatjames1130
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Thanks TF,

I didn't even notice band 41 being positive before, now I'm a bit concerned. Dr. G is closed till Monday so I'll have to call then.

Anyway, here are my hand-typed results:

BABESIA MICROTI BY REAL-TIME PCR- Negative

EHRILICHIA CHAFFESSENSIS (HME) & ANAPLASMA PHAGOCYTOPHILIA (HGE) BY REAL-TIME PCR- Both Negative

RICKETTSIA RICKETTSII BY REAL-TIME PCR- Negative

BABESIA WA1 BY REAL-TIME PCR- Negative

LYME DISEASE WESTERN BLOT (IGM/IGG)- IgM: No bands present. IgG: band 41 present (see attached report) IgMCDC- Negative IgMaIt- Negative IgGAIt- Negative

BARTONELLA HENSELAE IGG/IGM by ELISA- IgM Negative (Index=0.17/0.89) IgG Negative (Index=0.31/0.89)

LYME DISEASE C6 PEPTIDE BY ELISA- Negative (Index=0.13/0.90)

ANAPLASMA PHAGOCYTOPHILUM IGG/IGM BY IFA- Negative

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TF
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It would be good if you would put the picture of the test results back up because you have not retyped all of the relevant information in your post above.

For example, you don't give the name of the lab doing the test. To a lyme patient, that is very important.

I know I saw other things that were important also, so I hope you can repost the photo of the test results.

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thatjames1130
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Will do, just have to edit out Dr G's info
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thatjames1130
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 -

 -

 -

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thatjames1130
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The more I research, the more I become concerned with band 41. Some say it's non specific to Lyme, some say it's highly specific to Lyme, and some say it's between Lyme and some diseases that are easy to rule out, like syphilis.

What do you guys think?

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TF
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You need to add the "Reference Units/Comments" section to your post above where you give us your MDL test results.

This is very important information. I can't make it out entirely.

And, you have to label that information with the proper heading. In other words, you have to replicate the format of the test results so that it makes sense to the reader.

You can't just put it all together. It makes no sense unless it is in the proper columns with headings.

You put the info in "Reference Units/Comments" first when giving us your Western Blot results. Then, you went back to the middle column and wrote that information. You can't do that.

For the other tests, you didn't give us the info in the third column at all.

So, what you did isn't good enough if we are to try to help you figure out your chances of having lyme.

Otherwise, give us a much better picture of the document. One that is totally readable. Only the MDL.

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Lymetoo
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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.

--------------------
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Opinions, not medical advice!

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thatjames1130
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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."

[ 10-16-2015, 12:42 AM: Message edited by: thatjames1130 ]

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TF
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You didn't include all your bartonella results. You have both an IgM and an IgG. List both.
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thatjames1130
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Just did. Sorry, that whole thing was quite tedious.
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TF
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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:

http://www.chiro.org/nutrition/FULL/St_John's_Wort_Vs_Drugs.shtml

Here is a quote from that link:

"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."

Here is the official abstract of that study:

http://www.ncbi.nlm.nih.gov/pubmed/10823363

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.

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thatjames1130
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Thanks TF,

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

[ 10-16-2015, 12:57 PM: Message edited by: thatjames1130 ]

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TF
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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:

http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

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.

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thatjames1130
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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

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thatjames1130
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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

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sparkle7
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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.

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sparkle7
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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.

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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.


See my previous post to you here.


Once the anxiety and depression have improved a bit, you'll be able to cope better with all the other crap.

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Lymetoo
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quote:
Originally posted by Carol in PA:

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.

-

Ditto

--------------------
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Opinions, not medical advice!

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thatjames1130
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Yeah, I was actually reading up on it and saw that most Americans are actually deficient in magnesium without knowing.

I'll look into buying some. Thanks for that info guys. Maybe that's all it is!

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Lymetoo
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Try this for info:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

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thatjames1130
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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.

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Lymetoo
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You would probably feel something .. at least a herx .. though some do not herx.

It may give you peace of mind.

Be sure to order a magnesium that is easily absorbed. Oxide is not easily absorbed and neither is citrate.

Might try glycinate .. or the best in the world: ReMag.

www.rnareset.org

(not RNA drops .. ReMag)

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thatjames1130
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Thanks Lymetoo,

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.

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Lymetoo
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Life is never certain. [Wink]

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Opinions, not medical advice!

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thatjames1130
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quote:
Originally posted by Lymetoo:
Life is never certain. [Wink]

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

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Lymetoo
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Perhaps your problem-solving skills are just exceptional!

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Opinions, not medical advice!

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thatjames1130
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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?
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sparkle7
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Some people here try something called ART. It's a kind of applied kineseology.

http://articles.mercola.com/sites/articles/archive/2010/01/09/The-Absolute-Best-Muscle-Testing-System-I-Know-of.aspx

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.

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glm1111
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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*

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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.

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MichaelTampa
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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.

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thatjames1130
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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

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TF
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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.

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thatjames1130
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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.

http://www.amazon.com/gp/product/B000BD0RT0?psc=1&redirect=true&ref_=oh_aui_detailpage_o00_s00

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?

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TF
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Depression is a psychiatric (mental) disorder, not a neurological disorder.

http://www.who.int/features/qa/55/en/

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:

http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/87e8dfed931381b7852567c70012001f?OpenDocument

Here is a quote from that article:

"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.

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thatjames1130
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Also, anyone hear of houttuynia? Would this herb produce a herx reaction if I cant get the antibiotics from my Dr. G?
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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.

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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.

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thatjames1130
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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

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thatjames1130
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Regarding the twitching, I've noticed it rarely happens when I'm standing and/or moving. It usually happens when I'm relaxed.

Idk if this makes a difference or not

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dal123
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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.
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Ellen101
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Do you have the results of your thyroid testing? You may want to check out this site. http://www.stopthethyroidmadness.com/
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thatjames1130
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How would I go about testing through IGENEX? Would I have to see another LLMD?

Is it possible to get my GP to send my blood there?

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Lymetoo
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If you can get a Dr to sign the form, it can be done.

www.igenex.com

Test #188 and 189 is the Western Blot

They will send the kit to you (free).. then you pay when you send it in.

If you decide to do this, do the blood draw no later than Wednesday of any week. You don't want the blood to sit around in the post office.

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--Lymetutu--
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thatjames1130
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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?

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Lymetoo
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About $250 .. My insurance covered it but I had to hound them for 9 months.

Yes, take the form and the kit to the doctor.

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thatjames1130
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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

[ 10-20-2015, 07:12 PM: Message edited by: thatjames1130 ]

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thatjames1130
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Some new, probably irrelevant information.

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.

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glm1111
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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

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PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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thatjames1130
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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?

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Lymetoo
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Personally, I would only get the two Western Blots.

MDL is not as good as Igenex. I don't think they test for all possible bands.

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--Lymetutu--
Opinions, not medical advice!

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thatjames1130
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Thanks Lymetoo,

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

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Lymetoo
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Keep us posted!

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--Lymetutu--
Opinions, not medical advice!

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terv
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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.

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thatjames1130
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Terv,

What kind of symptoms was your son experiencing and how long ago did he begin treatment?

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