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» LymeNet Flash » Questions and Discussion » Medical Questions » New patient; Is my treatment typical?

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Author Topic: New patient; Is my treatment typical?
ScotS
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Hi everyone, thanks in advance for reading this!

I started lyme treatment recently, and have so many questions - It would be greatly comforting to verify that I'm going down the right path!

About 2 1/2 years ago I was initially diagnosed, run through 28 days of Doxycyclene 100mg 2x/day by a NON-Lyme Literate Doctor. Western Blot confirmed I had it before he prescribed the abx.

Fast forward to now: For the past year, my lyme symptoms have been back. Roller coaster fatigue, arthritic joint pain and/or weakness, and short term memory loss and the occasional fuzzy headed "brain fog."

After following many of the messages on this website, I decided 3 months ago to seek further treatment. I found a Lyme-Literate specialist i n Grand Rapids, MI - a 2 hour drive from my home in Indiana. His name was provided to me by a non-profit Michigan lyme association.

At my initial visit, the doctor had me fill out a questionnaire, and drew a LOT of blood. The samples were sent to Igenex for testing. As I had already been treated for Lyme in the past, he started me immediately on a "Detox" diet and orded many suppliments as well. He ran an EKG on my heart, tested reflex, blood pressure, and performed some type of eyesight test to determine neurological impairment (cognitive function).

The Igenex test came back positive both IgM and IgG levels. Eyesight ok. EKG ok.

Here's what I'm being treated with:

Omnicef 300 mg 1 pill 2x/day
Ketek 400 mg 1 pill 2/day

"Detox" diet, very similar to Atkins but MUCH more strict. (No artificial sweeteners, no nuts, I'm sure you've heard this song before.)

Supplements:
Primrose Oil caplets 1 pill 3x/day
B complex 1 pill 1x/day
Ultimate 10 Probiotic 1 pill 1x/day
Electrolyte Stamina 1 pill 1 3x/day
Cordyceps 2 pills 3x/day
Mens one-a-day multivitamin
Flax powder, 2 Tbsp. 2x/day
1-2 cups acidophalus yogurt 1x/day

I have been on this routine for 2 months now. Recently, my physician has added "Fungal Defense" to my shopping list to help control yeast infection.

Since my initial visit, the doctor has also done bloodwork to determine adrenal gland function, mineral levels within the body, testosterone, and serotonin levels.
Results: Adrenal function low, testosterone low, minerals - low magnesium. Serotonin test not back yet.


So - How does this stack up to everyone elses' treatment? This is a whole new world for me, very interesting and confusing at the same time.

Additional BONUS question! My HMO is being a pain in the rear about paying. Doctor is "out of group", the labwork is "out of group", blah blah. After an hour on the phone, my wife got them to agree to pay 30% of all costs, with the possibility of that increasing after we file to get the doctor added to the "in network" list. Are YOU guys having as much trouble with insurance?

Thank you a hundred times over for reading, PLEASE share your experience with me!

Scot

Posts: 9 | From South Bend | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
SForsgren
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Hi Scot,

It sounds like you have a good doctor from what you relayed. My experiences are fully documented on my web site below. Hope you will take a look. Be well.

--------------------
Be well,
Scott

Posts: 4617 | From San Jose, CA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
kelmo
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Sounds like you have a good doctor, as well. He is really treating the whole picture, as everything is affected.

Most of us pay out of pocket for doctors. Our doctor is widening his contracts, but so far we are not in it, but he is giving a discount, trying to farm out as many labs as he can to our insurance, and not having us come in for visits but every two months.

I'm so glad you are on the path...it seems a lot to keep track of, huh? Especially with brain fog. Do what you can, it's all good. As your brain clears, you can add the rest.

Keep checking in, there's hope in this board.

Kelly

Posts: 2903 | From AZ | Registered: Feb 2006  |  IP: Logged | Report this post to a Moderator
5dana8
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Hey

Glad you found a LLMD

You might want to ask about adding a high quality probiotic to your brew. Somthing with multi-strains that usually needs refigeration.
Do a search here on probiotics and there is a ton of information.

JMHP but eating yogart while on multi different abx is not enough to replace the good flora you are killing off.

make sure to space at least 2 hours apart when you take probiotics or else the abx will kill them off as well.

Good luck with your treatments and on your road to recovery [Smile]

--------------------
5dana8

Posts: 4432 | From some where over the rainbow | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
nan
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Sounds good, Scot! It seems that many of the LLMD's are adding more supplements to fit the patient these days, and that is good.

You say you have been on this regimen for 2 months now. Have you noticed a herx reaction at all? Everyone reacts to different abx in different ways. It is important to find the combination that seems to work best for you.

It is a crime that we must fight the insurance companies! Sounds like your wife did a good job!

Wish you the best and am glad you were able to find a good doctor. So many good people on this board willing to help...hope you will become a regular visitor here!

--------------------
nan

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David95928
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Have you discussed supplementation of testosterone, or stimulation of producion with hCG or chlomiphene. Also, what about the low magnesium. Some of your symptoms may be due to that and supplementation can greatly alleviate them. Have you discussed cholestiramine. It's a product that binds Lyme neurotoxins in the GI tract. Unfortunately, it also binds minerals and antibiotics. Still, some of you symptoms may be due not directly to the presence of bacteria but, rather, the presence of trapped neurotoxins.

Just a couple of thoughts.

--------------------
Dave

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HEATHERKISS
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Your Doctor sounds sooooooooo great! Very thourough.

It does sound like a lot of money. Does your doctor cater to your financial needs?

My husband and I pay out of pocket $600.00 plus a month. That includes copays, suppliments and of course our out of network LLMD.

This is more than we can bare financially..... But what's our health worth anyway? I plan on getting back to 100%.

I can pay the bills later when I'm healthy.

--------------------
HEATHER

 -

Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
lymex5&counting
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Be sure to get tested/treated for coinfections.

Best wishes, lyme x 8

Posts: 399 | From Texas | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
ScotS
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Thanks for all the replies!

5dana8: I'm currently taking a probiotic pill, although it's somewhat genaric. I bought it through Vitamin Shoppe online. I may investigate a higher quality replacement.

David95928:Hrm, I haven't discussed that with my doctor, I'll be sure to bring it up next visit.

lymex5: I believe the doctor _did_ check for coinfections; I _think_ I was negative. I'll definately inquire.

Thanks everyone, I'll keep checking this thread, you guys are great!

Scot

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ScotS
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Quick addition:

During my last visit, my doctor suggested treatment with the "Ondamed" device. While looking at the the pamphlet for it, the "quack alarm" in my head started going off.

I have completely trusted my physician thus far. I'm completely comfortable with, and understand the value of antibiotics, supplements and dietary change, but "biofeedback" devices and anything mentioning "electrical energy healing" definately enters the realm of highly questionable medical value.

The doctor said the therapy is covered by insurance; it isn't. My insurance company won't touch it.

The device IS FDA approved, but NOT in the same way as an X-ray machine or a kidney pump. It's approved as a "noninvasive secondary therapeutic biofeedback medical device." Attempts to find any information on the device at quackwatch.org or www.devicewatch.org are inconclusive, as the device is not in very widespread use in the United States. My attempts to Google up any conclusive medical studies of the Omnamed devices' efficacy in a controlled test are also fruitless. It's just a giant, expensive questionmark to me.

So.. thoughts?

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SForsgren
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If up to 2/3 of people may have Babesia and there are several coinfections - Bartonella, Ehrlichia, Babesia, Mycoplasma, etc., I always am suspect of the "I have no coinfections" comments..... Be sure you are tested.

--------------------
Be well,
Scott

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david1097
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Hi

On the ONDAMED thing, you are entering a realm of
highly controversial medicine.

That being said,
Some people swear by it some swear at it.

From the website, I can't really figure out if it
is a biofeedback machine or a "vibrational
medcine" machine.

Biofeedback apparently does have some effectivness
in allowing one to "tune" out or learn to ignore
pain.

Some people can do this on there own (i
learned to do it, as have many others with severe
chronic pain) other apparently can do it with
some training using assistive devices like
biofeedback.

Some cannot do it at all and end up
taking pain killers(bad). So in this regard maybe
this device is OK.


As far as the website goes,I know some of the Dr's
that are listed on the website and I trust what
they say.

The ones I know are good guys that give
the straight stories based on their experience.


On the other hand....

On the vibrational medicine side(i this is what it
is) it si a bit more complicated.

Again some
people (Dr's) swear by it and many patient s seem
to gain great benifit from using such devices.

I
have always been scepticle about such things but
I will not argue with what appears to be success
as inidcated by quite a few people.

Despite this
apparent success with some patients some Dr's
discard the whole idea as Horses**t.


To try to resolve this dillema in my own mind, I
have been doing a lot of research on this whole
vibrationsl medicine thing.

Things like RIFE are
mixed in here too since the basic premise is that
all living organism have some type of
"frequency"field around them.


This whole "science" is closely associated with
chineese medicine and acupuncture meridians, Yin
and Yang etc.

I have read the premier textbooks on
the subject and am not satisfied with the
explaninations given as to how vibrational
medicine is supposed to work.

The description is
quite interesting but the explaination does not
jive with my classical science training so I
believe that if they are on to something with this
"vibrational" stuff the explaination inaccurately
describes some process that does exists.


This may not be too hard to contemplate as being
the case since this "science" dates back to the
days of the formulation of chineese medicine
where little if anything was known about
biologocal processes.


Now is there a scientific basis for "vibrational"
medicine (including the much touted RIFE
treatment).

As it turns out, there is.


There is ongoing work on the effect of minute
currents and electrical potentials on plasmic
membranes.

These membranes are what allow
bacteria to absorb their nutrients.

Disrupting the
membrane can have various effects, including
allowing it to pass chemical compound which are
disruptive to the bacteria or cell.

The voltages
and currents involved are very small and the
transport speeds membrane pathways are pretty
fast, perhaps the frequencies that are involved
relate to this transport mechanism.


Another thing to also remember in this whole thing
is that some bacteria will actually form a
bio-film and communucate with each other, this,
using mechasims that are not totally understood.


It could also be that the "vibrational"
frequencies relate to this signalling phenomina.


Then there is the whole issue of gene activation
using magenetic fields and very small voltage
gradients.

This again is a well known effect and
is used in one form or another to treat no
recourse bone trauma wherer nothing else works.
It is FDA approved and does work in some cases.


All in all, there are a lot of weird and
unexplainable things that have been observed and
reliably documented in the "vibrational/energy"
areas but since they do not have a "good"
explanation they are dicarded by many.


As for me, I remain unconvinced (thus I have not
tried such devices)

Still I have an open mind as
to the possibility and as I learn more I am
trying to rationalize how such devices might
work.

If I can one day convince my self that they
do in fact work I would probably try something
but that point has not been reached yet.


So should you try it? Its up to you but I don't
think it would be appropriate to totally discard
the whole concept as quackery as there seems to
be something to it.


Not everyone will agree with me (I am sure on both
sides fo the aurgument) but thats the way I see
it.

That my $0.02 for what its worth.

[ 24. March 2006, 09:45 AM: Message edited by: david1097 ]

Posts: 1184 | From north america | Registered: Feb 2003  |  IP: Logged | Report this post to a Moderator
bettyg
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David, I tried sending you a PM but my pc locked up on your name.

David, would you go back into your last 2 posts here, and shorten the paragraphs? They are too long for many of us neuro lyme folks. Just use the pencil icon on both of your lower posts ok.

Remember to hit enter often and double space as you have done. Thanks so much.

Looks like an interesting thread and I want to read it all.

Welcome to the newbie, Scot.

Hae you printed off Dr. B's 05 lyme treatment guidelines? He's our expert in chronic lyme.

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ScotS
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Thanks for the new feedback guys!

David, I'm still on the fence about Ondamed. The big issue for me is un-insurability + cost vs. questionable value.

Betty - thanks for the welcome! And YES! You better believe it - Printing Dr. Burrascano's 2005 treatment guidelines is something I actually did 4 or 5 months ago after finding THIS wonderful website, and even before approaching my current doctor. I was asking him questions during my first appointment based on the Burrascano guidelines. My doctor mentioned that he had lunch with Burrascano at a lyme conference 6 months ago! Probably why my D.O. is so up-to-date. [Smile]

Thanks again all!

Scot

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david1097
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I put lines between each sentence. Is that easier to read?

You might also want to try to go to browser view tab and pick a bigger font size (I do this and it helps in many cases).

Netscape and Internet explorer have this under "view" in the top pull down bar then "Text size"

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Christine202
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I had 3 Ondamed treatments.... It definetly has some value as I felt VERY relaxed and clear afterwards, but did not see any long term effects... and for the price, and like someone mentioned, insurance does not cover.

I felt going to a more multidimential alternative practitioner was the better bet for my time and money..... So we'll see......

I am not sure exactly what benefits long term Ondamed has on Lyme specifically but I have spoken to several people who swear by it and even purchased a machine for home use... said it cured them....

I guess the jury is still out. I hope to hear more ondamed experiences and how they helped.

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psano
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ScotS,

I noticed that you didn't list any magnesium supplements and that your Mg is low. You need to add a good Mg supplement. Check Dr. B's guidelines for his recommendation. It's the one I use, and is least expensive if you buy it online from the mfg.

also, Ketek can cause liver damage. You need to protect your liver by taking at least milk thistle, 1 cap twice a day. I take that plus 300mg alpha lipoic acid twice a day. Both of these were recommended to me by my LNP after I suffered liver damage due to Ketek. I'm now doing fine on it.

Also, I was using flaxseed oil daily until I read Dr. B recommended no flax. I'm not sure why, but I decided to stop that one anyway.

Good luck.

Patti

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trails
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where does Dr B say NO FLAX? what page?

I dont see that and it is one of the best omega 3's!!! plus the only veggie one!

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liz28
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I seem to have done very well on this treatment so far. Like someone else wrote, it's straight out of Dr. B's 2005 guidelines, so you've got the cutting edge there.

Here's the one thing you may not have mentioned, though. Both omnicef and ketek will really smack your liver around. It is an unfortunate guarantee that if you don't take lots of liver support supplements (yeah, I know, more money down the drain) your liver enzymes will eventually shoot up, forcing your doctor to take you off all abx until you go back to normal. This is SO annoying and frustrating when it happens, because you lose valuable progress. Omnicef is what did it to me.

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psano
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trails,

read the link to his treatment guidelines, herbs. When it gets to EFA's look at the end of the line discussing plant oils...

http://www.ilads.org/burrascano_1102.html#regimen

I know it surprised me too.

Patti

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trails
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Thanks Psano---And thanks for the reminder in PM--I would have TOTALLY forgotten about this topic!

This is from his 2002 guidelines. He does NOT mention NOT using Flax oil in his 2005 guidelines. I would go with the most current one. (2005) It has a lot more updates and new info than any other of his guidelines.

He doesnt say why no flax in 2002 either. I have never heard NO flax...ever. So I am stickin to the flax.

Maybe if anyone knows him or uses him for thier doc they could ask about this????

Thaks for the DIRECT link!
trails

[Wink]

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robi
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This is from somewhere in hthe deep recesses of my (lyme) memory. Dr. B said no flax because t is often rancid. It MUST be high quality, fresh, and always kept cold.

I don't exactly remember where I heard this but I do think it is accurate. However, since I can't give te source, please use your own judgement.

robi

--------------------
Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy'

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psano
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I guess Dr. B's info needs to be updated, doesn't it? [Smile]
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trails
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That is VERY possibly the reason--robi! I know Andrew Weil talks lots about using NOT the supplimets but gently and freshly ground flax SEEDS b/c nature provides a better storing mechanism than humans can via any capsules.

Flax SEEDS are less likely to go rancid in short periods than flax oil pills.

I use flax seed oil pills that are refridgerated and in a black container. They are organic...I foget who makes them.

I also sometimes use flax seeds gently ground. What about you guys?

Posts: 1950 | From New Mexico | Registered: Sep 2001  |  IP: Logged | Report this post to a Moderator
   

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