posted
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.
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
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
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
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
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.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
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
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
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 Posts: 2135 | From Tick Country | Registered: Oct 2000
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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 Posts: 2034 | From CA | Registered: Jan 2003
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
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
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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
Posts: 9 | From South Bend | Registered: Dec 2005
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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?
Posts: 9 | From South Bend | Registered: Dec 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
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 Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
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
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bettyg
Unregistered
posted
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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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.
Thanks again all!
Scot
Posts: 9 | From South Bend | Registered: Dec 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
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"
Posts: 1184 | From north america | Registered: Feb 2003
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posted
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.
Posts: 437 | Registered: Sep 2004
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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
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
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!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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liz28
Unregistered
posted
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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Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
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????
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
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' Posts: 2503 | From here | Registered: Apr 2004
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posted
I guess Dr. B's info needs to be updated, doesn't it? Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
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
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