posted
Hello all, After 7 years of misdiagnosis, I finally began treatment 1 1/2 years ago. I've been on non-stop antibiotics, supplements- all of it and I really wasn't getting much better so my NP took me off the meds in order to see how I'd feel. After one month, I begged to get back on them- but blood was drawn and high liver enzymes came up. I had just started Biaxin and Flagyl but had to get off. But the worse part is that I'll be losing my NP- and there's no one else in the Tx. area who treats Lyme. She also practices in CA but I could never afford all the expenses- phone consultations are just as expensive.So besides not being on the antibiotics- I'll lose everything for the symptoms: depression, energy levels, insomnia.
I don't know what I'm going to do- what will happen to me if I'm oftentimes just holding onto a thread with the meds I DO have- what will happen when I have nothing....anymore?
I think the fact of now knowing what I have but the inability to treat it scares me even more then the actual disease itself.
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Jo3 I sent you a PM
take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Jo, would suggest you get Stephen Buhner's book "Healing Lyme" and consider getting on some of the herbs. They work great for many.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good evening Jo,
First, I want you to know that there are other options in TX. If you would like, I can put you in touch with a contact there...just let me know, OK?
Secondly, the time you spent on ABX is really not that long in the overall scheme of recovery time for the long-term infected. It could also be a possibility that you may have not shown much progress due to an unaddressed co-infection.
Third, the elevated liver enzymes could be a temporary condition. This doesn't have to mean that you have to cease all meds. A short term break could be just the ticket, and then you can resume at a lower dosage until all is clear again.
And last, there are other things as Gigi has mentioned that you can do for yourself in the interim to help boost your immune system.
Sooo, please don't despair.
My best, melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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bettyg
Unregistered
posted
Breaking this up into paragraphs of 6-8 lines and DOUBLE spacing for those of us with severe neuro lyme who can't read/comprehend as is.
quote:Originally posted by jo3: Hello all, After 7 years of misdiagnosis, I finally began treatment 1 1/2 years ago. I've been on non-stop antibiotics, supplements- all of it
And I really wasn't getting much better so my NP took me off the meds in order to see how I'd feel.
After one month, I begged to get back on them- but blood was drawn and high liver enzymes came up.
I had just started Biaxin and Flagyl but had to get off.
But the worse part is that I'll be losing my NP- and there's no one else in the Tx. area who treats Lyme.
She also practices in CAlif. but I could never afford all the expenses- phone consultations are just as expensive.
So besides not being on the antibiotics- I'll lose everything for the symptoms: depression, energy levels, insomnia.
I don't know what I'm going to do- what will happen to me if I'm oftentimes just holding onto a thread with the meds I DO have- what will happen when I have nothing....anymore?
I think the fact of now knowing what I have but the inability to treat it scares me even more then the actual disease itself.
Taking biaxin & FLAGYL. I had a major herx reaction to flagyl 2-9-06; you can read about it, "I'M OK, police stopped checking on me."
Go to 1st screen medical, TREEPATROL'S NEWBIE LINKS, read about flagyl there.
Also, print out his 8 pages of links, check them off as you read MOST important things first.
READ/PRINT off Dr. B's 05 treatment guidelines, 40 pages. You'll learn the most from that about treatments...ok.
There are other LLMD's in Texas; someone PMd you already. I'll let others discuss your issues you addressed.
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posted
Betty, Could you PM me their names just in case I missed someone. Thanks!
quote:Originally posted by bettyg: Breaking this up into paragraphs of 6-8 lines and DOUBLE spacing for those of us with severe neuro lyme who can't read/comprehend as is.
quote:Originally posted by jo3: Hello all, After 7 years of misdiagnosis, I finally began treatment 1 1/2 years ago. I've been on non-stop antibiotics, supplements- all of it
And I really wasn't getting much better so my NP took me off the meds in order to see how I'd feel.
After one month, I begged to get back on them- but blood was drawn and high liver enzymes came up.
I had just started Biaxin and Flagyl but had to get off.
But the worse part is that I'll be losing my NP- and there's no one else in the Tx. area who treats Lyme.
She also practices in CAlif. but I could never afford all the expenses- phone consultations are just as expensive.
So besides not being on the antibiotics- I'll lose everything for the symptoms: depression, energy levels, insomnia.
I don't know what I'm going to do- what will happen to me if I'm oftentimes just holding onto a thread with the meds I DO have- what will happen when I have nothing....anymore?
I think the fact of now knowing what I have but the inability to treat it scares me even more then the actual disease itself.
Taking biaxin & FLAGYL. I had a major herx reaction to flagyl 2-9-06; you can read about it, "I'M OK, police stopped checking on me."
Go to 1st screen medical, TREEPATROL'S NEWBIE LINKS, read about flagyl there.
Also, print out his 8 pages of links, check them off as you read MOST important things first.
READ/PRINT off Dr. B's 05 treatment guidelines, 40 pages. You'll learn the most from that about treatments...ok.
There are other LLMD's in Texas; someone PMd you already. I'll let others discuss your issues you addressed.
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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posted
We are also in this soon to be doctorless situation and looking at options. A contact with someone closer than Dallas would really be appreciated as this is a big place.
Even if all you know is a good veterinarian that will treat us if we sign in as "Fluffy" would be fine... That is as long as you are sure he won't put us to sleep.
This is a bummer. Just when we start feeling a little better the goons take out our Dr!
Thanks!
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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quote:Originally posted by James H: We are also in this soon to be doctorless situation and looking at options. A contact with someone closer than Dallas would really be appreciated as this is a big place.
Even if all you know is a good veterinarian that will treat us if we sign in as "Fluffy" would be fine... That is as long as you are sure he won't put us to sleep.
This is a bummer. Just when we start feeling a little better the goons take out our Dr!
Thanks!
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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posted
this isnt totally on topic, but I wanted to say thanks to bettyg for the considerate idea to break up and double-space the text for those with neuro troubles!
what a great idea!
santa_pax
Posts: 58 | From Planet Earth | Registered: Nov 2005
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liz28
Unregistered
posted
Okay, two things, both of them personal opinion and shared experience.
First, if it's a matter of immediately getting those liver enzymes down, splurge and buy a $50 product called Dr. Zhang's Hepa Formula 2. http://www.dr-zhang.com/
That's a lot of money, but if you are desperate and this will keep your doctor, then I can vouch for this drug. My doctor at the time also threatened to take me off abx because of high liver enzymes in the middle of grad school, and said it was this or nothing. The herbs worked in three weeks, max. If you have any money left over, you can combine it with milk thistle and N-acetyl choline to protect your liver.
If possible, could you list what you've been on so far? For example, high liver enzymes are a classic symptom of both babesia and bartonella. Flagyl is a super-harsh drug, which you might want to hold off until you are near remission, and which can temporarily mask co-infection symptoms. And biaxin by itself won't really smash Lyme.
Someone had great advice about memorizing Dr. B's 2005 protocols. His view isn't really to just throw the kitchen sink and hope something works. He combines the strongest possible cephalosporin (rocephin, omnicef, ceftin) with the strongest possible macrolide (ketek, zithromax, biaxin), then adds flagyl. And first, he treats for co-infections, especially bartonella.
If you get your liver enzymes down, then approach your doctor with these protocols, which are not only exciting and new but also low-maintance, since they are basically ketek paired with one thing or another, she may feel more comfortable about sticking with you.
It probably won't come to this, but if you really have nothing and nowhere for a short time period, you might want to visit a dermatologist about that horrible acne of yours. You Texans, always getting mud, oil, and sludge on your face, then sleeping in it night after night until you break out. It's a good thing you can go to a doctor and request a longterm prescription for doxycycline. It's not the greatest drug, but it can keep you together long enough to seek other options.
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JimBoB
Unregistered
posted
Or you could get some doxycycline for your pet bird, online, very cheap and good.
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posted
Off topic a little... I always wondered about the bird doxycycline. It comes in 100mg capsules, enough for a human.
What kind of 150lb pet birds are these anyway? What happens when you try to get a 150lb bird to swallow a pill he doesn't want, and he is in a bad mood?
Curiosity got the better of me and I looked it up one day.
What you do is mix the contents of a 100mg capsule in 6oz of water, and give it to the birds as their drinking water for the day. You throw out the leftover and give them fresh everyday.
Tiny birds take tiny drinks, and bigger birds take bigger drinks. Everbody gets about the right amount that way. Clever, huh?
If your bird weighs 150lbs (a pet ostrich?), I would still recommend being very polite to him.
As jo points out, the assistance of a good Dr. is what is needed.
[ 14. February 2006, 01:48 PM: Message edited by: James H ]
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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JimBoB
Unregistered
posted
Yes, James, I GOOD doctor is needed.
NOW the question comes to mind: IS there a GOOD doctor around for most of us. I found NONE I could afford. AND I couldn't afford to be treated by those that are NO good.
posted
Call me crazy, you wouldn't be the first one, but this sounds NUTS.
Lyme disease is a real and valid illness that needs to be treated by a real and valid doctor.
I am personally in the similar situation of being in central TX and losing the NP who has been treating me. There are LLMD's in Dallas area and I also think in Houston.
With all the bad press about overprescribing antibiotics, I do not think it is funny or wise to throw around so casually ways to go get antibiotics without being supervised by someone who is educated in treating lyme disease.
I do not know what I am going to do either, I will be left unsupervised unless I seek out someone else who will charge me all my arms and legs and those of my family too. Not covered by insurance.
This is why I have concerns. Lyme treatment should not be so underground. It is ridiculous to have to suffer from the disease itself then to also have to fight against the extreme ignorance in the medical community.
I'm TIRED of it already.
There, that was my rant. Such a mixed up situation to be in!
This is why I have concerns. Lyme treatment should not be so underground. It is ridiculous to have to suffer from the disease itself then to also have to fight against the extreme ignorance in the medical community.
Nice rant! imo it's underground because the gov. knows fighting against borrelia with traditional abx FOR THE MASSES is not an option. Thus there is no press on people getting cured of ALS and other incurable diseases. Yet we know it happens. Even though a llmd saved my life with traditional abx I can't help but understand their position. Wanna get even? natural supplements and herbs are helping folks and BigPharma knows this. Thus an all out asault on our supplements is on. read codex alimentarius. IF we are able to keep these supplements (thats a big and scary IF) we can tell the HMOs,Ducks and BigPharmas to take a hike. my little rant Posts: 731 | From Humble,TX | Registered: Feb 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Brentb; What is read "codex alimentaurius"?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
The more I search for a Dr. the less I find one. If we all had the money to go to someone else- somewhere else- we would. Maybe we can get a group discount for not only the Dr. (who probably won't take insurance, but for the airfare,hotel accomodations,meds, shopping and entertainment!)I am scared- if any progress at all was made, will it just fade away along with my fatigue,depression and memory?
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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"if people let government decide what foods they eat and what medicines they take, their bodies will soon be in as sorry a state as are the souls of those who live under tyranny." Thomas Jefferson.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
You really need a llmd.
I had 13 years suffering with symptoms but not diagnosed.....
by the time I was diagnosed in 2000 i was disabled... nonstop abx for me since 2000....
so I have empathy for what u have been through to make the small gains towards health you have.
I am NOT a doctor but in my opinion With lyme if you are not really geting better
you either need a different combo of meds or you have a coinfection that has not been addressed or you havent been on the meds long enough.
You need a llmd to guide you through the labyrnith of Lyme disease.
Some people can stop for a brief period and not get sicker... actually Over the years Ive read many posts by people who had to take a brief break for one reason or another ... and they did not get sicker....
I would be concerned about getting you liver enzymes under control. A llmd could also probaly tell you the most effective way to do this so your enzymes stay under control...
This is ones of those reasons we need our drs so much.
All of us appreciate the importance of an LLMD. We at the moment still have one, but we are losing her due to medical board attacks.
We are looking for another to take over our care.
We can't find one, or any medical care at all thanks to these Medical Board goons. That is the problem.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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quote:Originally posted by jo3: I am scared- if any progress at all was made, will it just fade away along with my fatigue,depression and memory?
my brains a slate I have few if any memories so i hear ya. as to the other symptoms here's some stuff i've done for my fatigue and anxiety (until you get better if a ssri gets you threw the day i'm all for it) Find a quality silver product. currently africa countries are curing malaria for about 6 bucks a pop and the va hospitals are using it. along with MANY other hospitals in secret. so it must work also it's kept me alive for about 4-5 xtra years. oil of oregano is also a great supplement. quality supplements,diet,excersice,water,detox, etc stay on this board and you'll learn alot. At this point you've made your body a hazard zone so to speak for Lyme. if you stop progress find a good abx protocal and get some abx anyway you can. the internet usually works well but literate docs are always the best. If lyme can withstand that we are all in trouble, but I seriously doubt it.
If you cant find a llmd (hope the pm helped) asking around one can sometimes find a good doc to work with. We still need our docs! I hate steroids but my last doc showed I had adrenal stress and i was not producing enough of a steroid. he explained it to me and showed the graphs. the test are pretty cheap. anyway he was right and i'm now making progress and feeling better at the same time due to the prescription.
best of luck
Posts: 731 | From Humble,TX | Registered: Feb 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Liz28 said, "First, if it's a matter of immediately getting those liver enzymes down, splurge and buy a $50 product called Dr. Zhang's Hepa Formula 2." http://www.dr-zhang.com/
Click on "order online," and scroll down to Hepa F. No 2 Formula.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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JimBoB
Unregistered
posted
Jo3
I totally agree with you that you need someone to look at you.
I have a young eagle out near my back yard, should I send him over to give you his eagle eye?
All kidding aside, go to Amazon.com to the left of this post and order the book "Healing Lyme" by Stephen Harrod Buhner. Once you learn what is in there and start using it, you will be well on your way to truly healing yourself.
I totally agree with you that you need someone to look at you.
I have a young eagle out near my back yard, should I send him over to give you his eagle eye?
All kidding aside, go to Amazon.com to the left of this post and order the book "Healing Lyme" by Stephen Harrod Buhner. Once you learn what is in there and start using it, you will be well on your way to truly healing yourself.
All without wasting a lot of money and time.
Jim
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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posted
As long as it's not the "evil eye" -I've got enough of that already!
quote:Originally posted by jo3: Thanks Jim-will do!
quote:Originally posted by JimBoB: Jo3
I totally agree with you that you need someone to look at you.
I have a young eagle out near my back yard, should I send him over to give you his eagle eye?
All kidding aside, go to Amazon.com to the left of this post and order the book "Healing Lyme" by Stephen Harrod Buhner. Once you learn what is in there and start using it, you will be well on your way to truly healing yourself.
All without wasting a lot of money and time.
Jim
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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posted
Jo, Blessed are the Lymies with access to care from a practioner who can effectively treat Lyme.
Those without that access do have options to alternatives that have helped many. Some have even gotten well with these alternatives.
Some have even required using these alternatives because the conventional methods didn't work or did harm.
Thanks to internet resources and forums like this one, we don't have to be helpless or hopeless!
Many get better or even well with herbs, supplements (especially Magnesium), the Salt/Vitamin C protocol, and rife therapy.
Some find it better to combine some of these methods.
Using these therapies, or any others, is best with the supervision of an experienced practioner.
The beauty of these is that if a practioner isn't available to us, we can still use them.
All of them have resources available for our information and support.
All of them are experimental and possibly risky. So is conventional, long-term antibiotic therapy for Lyme.
The data I've seen says the risks of any of the therapies don't come close to the risks of not treating Lyme.
You can do a search here for alternatives for your specific symptoms, also.
My daughter and her partner, both Lymies, have severe clinical depression. They find Sam-e to be effective for it, with no side effects.
Until you have reliable professional care, do your research.
Don't dispair. You will find ways to help yourself.
Best wishes to you, Sue G.
Posts: 61 | From Florida, USA | Registered: Aug 2005
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JimBoB
Unregistered
posted
No EVIL EYE here Jo. WE raise only GOOD eagles here.
Boy, I had to go back and check your name as my wifes name is Jo. Only SHE is Jo5.
Knew I wasn't writing to HER.
GOOD post Sue G. Pretty much MY sentiments exactly. I have been on MY OWN ever since my DUCK just started ignoring me when I asked him for help. He wouldn't even answer my phone calls. JERK!
Be careful what you wish for!! You know if anything happens to that man in the near future- we're gonna have to blame you!! You're a funny man- you know your marriage is on the rocks when you have to write to your own wife!!
quote:Originally posted by JimBoB: No EVIL EYE here Jo. WE raise only GOOD eagles here.
Boy, I had to go back and check your name as my wifes name is Jo. Only SHE is Jo5.
Knew I wasn't writing to HER.
GOOD post Sue G. Pretty much MY sentiments exactly. I have been on MY OWN ever since my DUCK just started ignoring me when I asked him for help. He wouldn't even answer my phone calls. JERK!
Some day he will pay.
Jim
Posts: 247 | From san antonio,tx | Registered: Oct 2004
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