lymeHerx001
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posted
For still posting on this board despite being sick and having no answers?
My LLMD seems like he is on pluto and he is the one that gave me my name LymeHerx.
For without giving me Biaxin and telling me to push through it I wouldnt have this dreaded chemical sensitivity and balance problem.
I might still have been sick, but I wouldnt have upset the lyme and toxin demons.
Ive been going to him for 6 years and have seen no improvement.
He thinks Im getting better, I tell him
A) Im still in pain B) Im still very sensitive to chemicals and mold C) I still herx on abx D) I cant tolerate a full dosage of abx E) My liver still tests normal F) Still get burning from sugar so I stay away G) Still have sleep problems and are dependent on drugs to sleep H) Still cant exercise I) still have brain fog J) still have floater K) Im getting older (isint everyone) L) Still making under 20,000$ a year! M) still with my folks o) still in lots of pain, did I mention that? P) dont want opiates Q) abx only releive my pain for a little while then... R) I still herx, (did I mention that?) S) still have nero symptoms (can you tell
I must be the biggest fool in the world to still give him my business.
I must single handedlly have the hardest to treat medical condition in the world, because of the dozens of doctors I went to, none can really tell me whats wrong or how to treat it.
This guy thought lyme, now mycoplasma, and I feel like my brain and nervous system is disolving.
He acts like he doesnt care!
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
Did I mention that I think hes trying to kill me by telling me to take levaquin with advil and coffee?
Posts: 2905 | From New England | Registered: Sep 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Is your LLMD and ILADS member or ILADS "educated"?
Even if so, it seems that you need a new doctor. Time to move on to a new plan of action.
I didn't start making any real progress until I started getting rid of these.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Maybe you simply can't tolerate antibiotics. All the toxic buildup in your liver would make other toxins recirculate in your body and render you sensitive to just about everything. I personally don't believe in herxing if it doesn't go away.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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lymeHerx001
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posted
I love Flagyl. I have stayed on it for many months at a time and I always feel better on it.
I know it goes after parisies.
It always clears my bowels too. Im not talking watery stool either.
M0joey I know you are right. I just dont know what to do about it.
My liver tests are always normal. Did coffee enemas for a while ---------did nothing.
NAC gives me a migrane and Milk Thistle makes me suicidal still. Yes Im not exagerating.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Lymeherx, I'd look for a different strategy if this one is not working for you. They say the sign of insanity is doing the same thing over and over and expecting a different result ... so perhaps you aren't an idiot but are just insane.
Parasites were a biggie for me. I really made progress when I addressed them. Humaworm is good. So is triphala and enula.
When you did the coffee enemas did you be sure you were getting the raw materials to make the glutathione that the enemas trigger production of? I use whey protein powder in conjunction with the enemas (drink the whey, not the coffee ).
What about metals? NAC and the migraine makes me think of metals.
I'm also thinking toxins, like mojoey.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I ordered the humaworm without casara sagrada and senna, because the original tested badly for me. Will see if this one makes a difference.
Some of the herbs from hulda clark's parasite cleanse have been very helpful, also determined by energetic testing.
I wouldn't add in the triphala until later on.. it's really strong.
Esp with your symptoms, lymeherx, I would start slow if you decided to go after parasites.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I agree with Joey, the parasite treatment can be very difficult.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymeHerx001
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Member # 6215
posted
yes six, im thinking metals too!
I did a urine test and mercury was the highest out of all of the metals, however it wasnt even in the medium range.
But that doesnt mater because I was too affraid to take the DSMA and move the mercury around.
I must say and I have said it before that I got much worse after my dentist (years ago) put in abou 5 huge amalgam fillings.
However when I got them drilled out I didnt notice any difference.
Tiphala used to move things through. Now it just gives me bad gas lol.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
Chlorella didnt do much btw.
NAC though is terrible for me!!!!!!!!
Im thinging that its mercury in the brain. GiGi is right all along.
Im just overlly sensitive to mercury and the ducks wont talk about it cause they dont know!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
If you tested for metals, I'd work on getting them out. It can be a huge piece of the puzzle. Huge. That is probably why NAC is terrible for you .... it probably moves them around too much
Have you taken Zeolite? It's great for binding metals.
Triphala does more than just keep the bowels moving, it also has antibiotic properties.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Other things to consider:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
when I mentioned porphria to my doctor he asked like I definitelly did not have that!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Agreed with six...NAC will mobilize the mercury. There are clearly metals in your brain. Either that or you have a sulfur sensitivity which would lead to headaches. But if you just flat out feel terrible every time you take NAC, I would take a hard look at chelation
Posts: 713 | From Los Angeles | Registered: Oct 2007
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lymeHerx001
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posted
I eat eggs with no problems what so ever.
In face I live off eggs!!!!!!!
Eggs have sulpher, so I should feel it right?
Also MSM does nothing.
NAC makes me sick!!!!!!!!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I agree with Keebler, get a new Doc, if he's only given you Levaquin and he suspects Bartonella, well lots of people don't respond to Levaquin....I didn't
lymeHerx001
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Member # 6215
posted
Did zith and rifampin. They did nothing. But then again I dont think I have bart. Tested negative 7 times. Tested + 7 times for mycoplasma pnemoniae.
Doxy did nothing at first, then it started making me suicidal. I know its weird.
I cant handle the herxes or toxins, if you want to call it that.
I wish I had the money to start doing lots of saunas again... Those really helped.
Posts: 2905 | From New England | Registered: Sep 2004
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I understand where you are coming from with the doxy. I went on to it after treating Bart with cipro with some good success 2 years ago. I found the doxy to be working for the first 3 months and keeping things at bay.
After about 4 months Bart symptoms started to creep back and the doxy simply was not enough. By the 5th month I would take doxy and I would be a mental case. Rage and extreme irritability.
My point is, for me the presence of bart back in the mix irritated the crap out of it with doxy, and in turn irritated me.
I can take doxy if the bart is out of the way, otherwise, no chance.
Quinalones are the only thing that touches it for me. Maybe you have Bart.
Had I not done cipro or Levaquin I would be posting here saying that antibiotics dont work and I would probably be in a looney bin.
Do half doses as the herxs can be fierce. The gains can also be very substantial.
Maybe a new doc is the best way forward. A pair of fresh eyes may be the key. Hope things work out for you.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Maybe try thinking outside of the box & try a new approach?
I haven't done it but many people here find someone who can do energetic testing. That may help to start you in a new direction?
I think the energetic testing can be very accurate... I've pretty much given up on standard lab tests. The drugs didn't help me, either.
Sometimes you just have to try something completely different & see where it takes you.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Leelee
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Member # 19112
posted
Thank you, Keebler, for the link. Printed out the list to consider.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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lymeHerx001
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posted
quote:Originally posted by NMN: [QB] Lymeherx,
I understand where you are coming from with the doxy. I went on to it after treating Bart with cipro with some good success 2 years ago. I found the doxy to be working for the first 3 months and keeping things at bay.
After about 4 months Bart symptoms started to creep back and the doxy simply was not enough. By the 5th month I would take doxy and I would be a mental case. Rage and extreme irritability.
My point is, for me the presence of bart back in the mix irritated the crap out of it with doxy, and in turn irritated me.
I can take doxy if the bart is out of the way, otherwise, no chance.
Quinalones are the only thing that touches it for me. Maybe you have Bart.
Had I not done cipro or Levaquin I would be posting here saying that antibiotics dont work and I would probably be in a looney bin.
Do half doses as the herxs can be fierce. The gains can also be very substantial.
Maybe a new doc is the best way forward. A pair of fresh eyes may be the key. Hope things work out for you.
Thanx NMN,
youre the only other one that has said that about the doxy, except for me it was like that in fast forward.
At first I thought it was a miracle for about a week, then the burning skin started, I thought it was a photosensitivity issue, then I was a mental case depressed and suicidal.
I went off it and then tried it again. Same thing, except the good feelings were gone! Dam.
I have leviquin here but am affraid to take it being a coffee drinker and computer user (tendons) and everthing like that. I would be willing to start small though.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Load up on magnesium for a week first. I took 900 mg (I take 600mg every night) of mag malatein my preparation for levaquin.
I personally don't buy into the Magnesium feeds the bugs theory. You can't starve them of magnesium without starving yourself, therefore causing you more damage.
I was ll pumped up and waiting for all of these side effects that never came. I am on 750 mg now and jog every other night.
It seems to me that you are either predisposed to the tendonitus or your not. Take it handy and stay in touch with your doc all the way.
Why don't you give up the coffee?? I gave up just about everything to beat this. I was a smoker and drinker and ate what I wanted. Now I don't put a thing in my body without first asking the question
"What benefits are you going to give me"?
I don't understand the computer user statement and the tendonitus??
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Lymeherx I hear you. I have now come to question all doctors even the "LLMDS". After reading in cure unknown that they weren't giving the full treatment unless you were rich or connected, which I am neither, I can't fully trust them either, but they are the only road I have.
[ 04-20-2009, 11:33 AM: Message edited by: John S ]
Posts: 743 | From New York | Registered: Apr 2009
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
[QUOTE]Originally posted by NMN: [QB]
I was ll pumped up and waiting for all of these side effects that never came. I am on 750 mg now and jog every other night. /QUOTE]
Thats awesome NMN, according to literature you should have blown up your tendons along time age.
As far as the coffee goes, yes its a drug and I get a high from it in the morning. Im addicted like everything else.
Most likelly because I take benadryll with my ambien at night to sleep and I need a pick me up in the morning. Yes I know what happened to elvis and believe me, I cut WAY BACK on the coffee.
I literally used to abuse myself the first year of treatment by drinking 10 cups a day with sugar and not once did my LLMD order me to cut back.
Thanks alot doc, I found out on my own that sugar was causing the burning.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
just wanted to thank you for all your replies, its more then I get from my LLMD which is just smile followed by silence and the sound of his pen on his pad writing me a prescription for God knows what.
Posts: 2905 | From New England | Registered: Sep 2004
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luvs2ride
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posted
NMN said:
quote:I personally don't buy into the Magnesium feeds the bugs theory. You can't starve them of magnesium without starving yourself, therefore causing you more damage.
I agree 100%!!!!
Lymeherx,
Ditch your doctor. Find one who will look at your total picture. I agree with everyone else that NAC reaction is a strong indication of heavy metal toxicity.
Detox has been as important to my recovery as medication.
My ILADS LLMD/Rheumatologist is the best and she has me 100% functional inspite of a severe rheumatoid arthritis that initially was in every joint of my body.
She treats the total picture not just drugs for bugs.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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lymeHerx001
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posted
Thanx luv.
This is not an excuse but detoxing can get very expensive and its very touchy. Only few know how to do it properlly from what I understand.
Should I take a test dose of DSMA to see what happens?
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
would cilantro release mercury like the NAC or would I be wasting my money on it?
I dont really understand the mechanism of something that binds mercury and something releases it.
Posts: 2905 | From New England | Registered: Sep 2004
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cactus
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posted
Hey LymeHerx, your pm box is full.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
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posted
thanks I will delete everything!@
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
they dont allow you many messages do they?
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Some YMCA's have saunas. Check around, maybe you can join and use their sauna, since you said it helped. BTW, this may be a detox method, and heat makes ketes unhappy too.
Sounds like you and your doc are tired of each other. This happens with chronic diseases, especially complex ones.
And do you need a doctor to tell you to give up caffeine when you are really sick? Likewise, sugar and alcohol.
Posts: 8430 | From Not available | Registered: Oct 2000
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lymeHerx001
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posted
well lou, I was out of my mind the first year I was seing him.
I just thought I was plain crazy. But all of the other symptoms like burning pain and muscle pain and fatigue just didnt add up.
I expected him to at least be firm with me, instead he pushed abx.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
thank-you for all the responses and PMs.
I am thinking again that Im not an idiot and neither is my LLMD.
I am sick and my doctor is overworked and over whelmed with all the patients he sees.
The downside of seing some one new is explaining to them EVERYTHING and also the cost of going to a new doctor.
I allready tried that with another doc (who will remain nameless) who specializes in Lyme, and he was $500 and did not offer me much advice except to go on minocycline.
So I am apprehensive about going to someone new.
Also Yale was a HUGE disappointment!
I feel like an outsider here , like an alien from another galaxy and they dont know what to do with me because they seem to think Im normal.
Anyone who eats a piece of bread and has buning in their feet is not normal. SOMETHING IS WRONG>>>>>>>>>>
HELLO DOCTORS < IM SICK I NEED HELP PLEASE
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
uhh, I feel sick today just because I took 1/4 a pill.
I think im doing sauna again.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
^
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