take and be very careful..
Posted by Keebler (Member # 12673) on :
- What's dangerous is over simplifications and broad generalizations as in post above.
Sometimes, often, oral antibiotics and other Rx (along with key support measures) do indeed work.
Many have recovered with oral protocols and such protocols used by most LLMD include addressing fungal issues as well. In fact, most LLMDs address a wide range of issues that are connected. -
Posted by Keebler (Member # 12673) on :
- For anyone new to lyme or other tick-borne disease, these are among the top patient education, advocacy and public awareness organizations.
Also see the articles and books links at such sites. They are very valuable, indeed.
Global Lyme Alliance -
Posted by Keebler (Member # 12673) on :
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . . -
Posted by Brussels (Member # 13480) on :
Come on Keebler,
there are some problems with all types of treatments, specially involving excessive drugs.
I think the post above makes some sense, and many doctors (not only LLMDs) do prescribe too many antibiotics, even for acne, which I particularly find wrong.
There must be reasons why so many pathogens are getting antibiotic resistant, and as many here said, some antibiotics do cause very dangerous consequences.
Just see how many people are suffering from allergies (not only caused by antibiotics, but antibiotics are linked to leaky gut condition and increase of allergies).
You may say: better have allergies than lyme.
Well, if antibiotics did cure lyme for sure, yes, I agree.
But whether antibiotics are still curing lyme TODAY, it's still to see, as it does not seem to work for many people.
As I fight chronic candida for the last 30 years, coming and going, I just can say that candida is not fun.
Even if it's less dangerous than lyme, in a sense, it is very bothersome causing many symptoms like lyme.
Once you get to the stage of several food allergies, it's absolutely not fun too. You start then losing the ability to take in nutrients. Nutrients are essential for life.
So... conclusion: think twice before taking all these drugs, specially children. As Borrelia is spread in insects, well, the only way to give them a life is to strengthen their immune system.
Antibiotics can strengthen the immune system only as a collateral effect: if it truly heals infections, the immune system can recover.
If it does not heal infections, antibiotics will contribute for harming the immune system. As simple as that, in my opinion.
Posted by Keebler (Member # 12673) on :
- The first post makes declarative statements that are not true.
Of course, there are considerations with any path. Of course, there can be risks. Still, it is just not true that oral antibiotics or Rx do not work - or that all llmds are dangerous.
Neither statement is true.
There are plenty of other ways to explain how to explore some of the possible risks to weigh them, to help offset them or even find other ways, etc. There are other ways to say that there is no one guaranteed path, some do well with one way; others with a different method.
But that is not at all what the first post states. To imply "always" "all" is just not the case. -
Posted by Robin123 (Member # 9197) on :
It's not one size fits all. I know Lyme doctors who are saving people's lives with skillful use of antibiotics. Sometimes antibiotics are what's needed. I myself benefited from them for 5 years.
Having said that, yes, of course there are also many problems with antibiotics. I think they should be used strategically and accompanied by complementary care.
Posted by lapis29 (Member # 47626) on :
I 100% agree with OP
there are half-a**ed Docs who bill themselves as LLMD's who do half-a**ed treatments while charging LOTS of money.
some of their treatment absolutely do not work, and yet they recommend them continuously. they bankrupt desperately ill patients without a second thought and leave them still very ill.
obviously there are awesome LLMD out there, but there are bogus ones too. you have to be aware.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Keebler:
- What's dangerous is over simplifications and broad generalizations as in post above.
-
(referring to overlyme's post)
Agree
Posted by lapis29 (Member # 47626) on :
quote:Originally posted by overlyme: intercranial hypertension is another biggy
with lyme..for all you guys out there and think
this may be happening to you. get your eyes
checked for palpademia in the eyes and look
for the venous pulse in the eye..it is a
sensitive marker for raised pressure..the
venous pulse goes away with raised pressure.
I am not a doctor so look it up.
l
oh crap, I think I have this. almost certain in fact.
did you get diagnosed with this? what treatments did you get?
did they poke your spine?
Posted by overlyme (Member # 43455) on :
they will look into your eyes and see if the eyes
are effected.look there first and try not to do
do the lumbar unless you really have too..
the venous pulse is a diagnostic indicator of
high pressure..it is a good test but some dont
have the pulse and have normal pressure..
Posted by overlyme (Member # 43455) on :
its the absence of the venous pulse that is
diagnostic
Posted by overlyme (Member # 43455) on :
keebler
we do get better from orals..but there are some
llmd that are not caring about side effects..
I never said not to take antibiotics..there
are herbs and some antibiotics that you cant take
because of toxicity issues..but the llmd will
push them..
Posted by Robin123 (Member # 9197) on :
I still think we're dealing with a range of doctor responses to this epidemic. Perhaps best to find out who the doctors are who are open to wise care, as in best results from antibiotics and complementary care. They do exist and I'd like us also to acknowledge that balancing fact.
Perhaps to screen the doctor's office more closely and raise your concerns before you schedule any appts. As in, will they educate you about side effects, will they treat you so your herxes will be manageable, will they look at your entire body's health, will they do bloodtests to see your body's chemistry, etc.
You can tell them what you want and what you expect, and hear what their response is before making any appts.
We have outstanding doctors in my area who do all this, and I am used to expecting and hearing about quality care.
Posted by Lymetoo (Member # 743) on :
We are always the ones in control.
Posted by Brussels (Member # 13480) on :
Yep, definitively, Tutu.
Using what's left of our brains is the BEST option for healing lyme.
Even the brightest physicians' brains cannot understand all chronic problems linked to lyme.
When our lyme brains are not working, we can still use intuition and gut feeling to say 'yes' or 'no' to a treatment.
And to a physician.
And when your gut feeling says: this is mostly a money trap, jump off the boat.
Or when your feeling says: this is possibly dangerous for me, jump off again.
Or when you feel: this may work, but it will ruin me, I would also jump off.
Why? Because IF it doesn't work, how the heck you'll be able to TRY some other way without funds?
It's not fair to pay so much money for whatever treatment that exist on this planet, in my opinion.
In Switzerland, one of the richest countries of this planet, I feel I pay expensive to my lyme doctor (150 dollars an hour).
but when I see how much you guys pay....
One of the best naturopaths in Germany charged me 80 euros (about 100 dollars) an hour.
Now she got more expensive (90 euros).
But when I hear what you guys pay, it's unbelievable.
Knowing that there is no fixed protocol to heal any chronic disease, including lyme, well, you know you'll be treating long term.
How the heck can these guys charge you all your life long savings for a couple of months of treatment?
There IS something wrong.
Anyway, I know it's not a thread about finances, but that overcharge feels somehow suspicious, specially for me, an outsider watching you all in the States.
Posted by overlyme (Member # 43455) on :
lyme too
that is not true..i new the side effect from
tettracycline..my lyme was not that bad..I told
my llmd that I did not want to take tettra
because of intercranial hypertension..He said
that no one gets that and if i wanted to get
rid of lyme to take it..so I pulsed it..by 6
months I had dementia and could not function..
i new my spinal fluid was raised..i went back
to the llmd and he said that it is a herx..
i said no and he started screaming at me that
i was looking to far into this..then went to
local doc and he thought i was depressed then
to the many hospitals that would not act to
give a spinal tap...they could not see it in my
eyes but it was there..mri clean..i begged and
begged everyone i new to help me to get them to
realise the seriousness of the situation...
relieve the PRESSURE...i was shunned by
my own family and it just kept going with
severe neuro...after six months the mri was
BAD BAD BAD! then i went back to the llmd who
turns and says that the mri result was from the
pressure..i was so angry because i told him
in the first place..oh doxy and mino do it too
i said no that it was very rare for them to
do it but tettra very likly to do it...this
llmd destroyed my life.. lyme is nothing..
Posted by lapis29 (Member # 47626) on :
overlyme, sorry to hear about your experience, I hope you are doing much better and will continue to improve.
Posted by Brussels (Member # 13480) on :
I'm also sorry.
LLMDs are just human beings.
They should not think they are masters and the only holders of truth.
We are in a fragile situation, fighting this awful disease. Lack of self confidence, people saying we are inventing things, society denies us.
So it's easy for anyone to start behaving as though they are much better, the know-all guys.
No one is infallible. Be it LLMDs or not.
That is why I go by gut feeling: you feel the person is disrespectful, get away.
You don't need anyone to shout at you.
You already have enough problems and you are paying for his competence.
Respect should be reciprocal.
Look into binders: binders do help for many problems. I also find it crazy how so many lyme doctors give antimicrobials in great amount and leave the patients deal with the GOOD herxes.
What the heck? How can a toxic soup be GOOD??
Herxes do damage and can kill, and herxes are one of THE most powerful ways bacteria and pathogens fight back, to win against your immune system defenses.
So how can they leave so many of lyme patients without a THOROUGH support of herxes?
Drink lemon water, take a lot of water and do dry brushing!
As though that would bind most neurotoxins??!
I find this is also absurd. A herx is not good. If you herx, you should be taking stuff to support your detox organs, and neurotoxin binders, in rotation.
If an LLMD is not doing that, in my opinion, he deserves to be fired.
Plus all the collateral effects of these multiple drugs, that people take lightly.
then still a practitioner that shouts at clients??!
Posted by Lymetoo (Member # 743) on :
I'm very sorry for your experience. I have fired many doctors over the years. I will not put up with incompetence from them.
If they won't listen, I'm out of there.
Posted by overlyme (Member # 43455) on :
i have lost faith in the conventional way we are
treating for lyme..something is bieng missed..
plan to do alternative and build the body instead
of tear it down..we kill lyme slowly or it kills
us by cytokine storm..very simple
Posted by dal123 (Member # 6313) on :
Something is not right here. Too suspicious of this story,
Posted by Robin123 (Member # 9197) on :
Overlyme, you need to find someone you can work with - who knows what they're doing, and who gets what's going on with you. Lyme-literate naturopaths do what you're describing, so that's the type of doctor I'd recommend.
Posted by Brussels (Member # 13480) on :
I agree with Robin.
It's easier to find good naturopaths or herbalists that listen to you.
I hope you find the help you need.
And if not, trust your gut, not the gut of the practitioner!
Your health concerns you more than anyone else.
The practitioner must be working in tandem with you, not imposing his mind and his opinion.
We all know that after spending months, years reading we end up knowing some subjects even more than the most educated physicians.
The physician is just a poor human being, like you and me. He's not God, even though some behave as gods.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by dal123: Something is not right here. Too suspicious of this story,
- .
Posted by overlyme (Member # 43455) on :
why when a person with lyme posts you think it is
suspicious? i am NOT new to this site. i am not
the Idsa..I have an LLmd that never checks your
blood work when he sends it out until you go for
your appointment. WTF? he is a good doctor but
lax in some areas..i have blood work sent to me
because it wont be read by him..if there is
something bad on your report no one is reading
it..was put on amox high dose and had to stop
because of yeast..so now he wants bicillin 1
injection per week..isnt that a little low?
$100 an injection..this is going to be very
expensive..all i wanted from the start is iv
so here I am as usual trying to figure out
what to do..not the doctor but me..and I am
not the only one to be really upset about this
but other patients as well..i have not been on
this site because i was ok.. my old tag is
polar blast..had to change it to overlyme..
or so i thought..i get enough of doctors not
believing me and my family who would never
fight for me even if i was dying in hospital
where they were wrong and i was right ..that is
why i have this crappy disease because my
closest family allowed the medical field to
almost kill me many times with lyme..so we
now have llmds that take unnecessary risks..
and in my opinion need more office staff to
make sure we are addressed..i am not seeking
to hurt this llmd as we need them and he still
is a good doctor but just really find a
protocol that works even if iv..we cant stay
on antibiotics forever!
Posted by Keebler (Member # 12673) on :
- A major concern is that, it seems that you might think your doctor and other doctors who treat lyme are the same. They are not.
In looking over your posting history, IMO, it appears that your doctor is not really what most of us would consider a LLMD.
He may "treat" lyme but there appears not to be a comprehensive protocol nor the proper support for cytokine storms (aka: liver support).
There is not certification for the term "LLMD" but most of use have come to think of that as those who are ILADS educated in the science of all tick borne infections and the various protocols at least in the various books by some of the more well known LLMD, and detail from presentations at ILADS conferences
even if a different Rx, or various different Rx are used, there are some norms and your doctor just seems to have been out of the norm in the comprehensive nature, IMO.
Even among those who may have "earned" the stature of LLMD, some are just so much more advanced & experienced than others.
There is no one recipe, of course, each patient is different and has a different set of infections.
And, it appears that for various reasons the doctor you have now is not a good fit for you.
Still, some of the "norms" the basics, can be found in this, as a template of sorts. Again, even if other Rx or herbs are used, this is extremely vital to consider.
Also, the books by Dr. H regarding the 13 things to consider in getting better.
Links next -
Posted by Keebler (Member # 12673) on :
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
In keeping with the liver support suggestions above {Milk Thistle, etc.] details in links below are "required" for everyone who treats lyme, no matter what approach, absolutely essential elements:
Topic: can non llmd treat lyme ? How much would a doctor really need to know? [Clue: way more than most might think]
TF, Robin123 & hopingandpraying have excellent detail here -
Posted by Robin123 (Member # 9197) on :
What I am saying here is, first of all, I believe you, and second of all, we can waste our time dealing with docs who don't work out for us.
You posted above all you wanted was IV. Then you mention the doc wants to do bicillin shots. Perhaps a discussion here about the kind of care you need would be helpful, as in these are your symptoms, here's what you've tried, mention anything you responded well to.
If you want to do alternative care that helps build your body, then a good naturopath can do that with you. You could ask for referrals for NY in the Seeking section.
Posted by overlyme (Member # 43455) on :
i think i am going the holistic route, i am so upset with not just the llmd but that i have a lack of support that my family
gives me..in a life or death situation my own mother did not believe me..wife did not believe me and this is very frustrating for me..
they believed the doctors over me..I am adopted so this is my adopted mother..what did i do that my word was not credible? why does
my own mother think that i dont have lyme and never did? they never understood nor cared how severe lyme was and its effects on
me..I got psuedo tumor cerebri and that was a medical emergency yet i thought they would know what to do at the hospital..i was
so wrong! i turned to my adopted mother for help and was called a lier..that I had anxiety..to stop it..well I got really hurt
and it did not have to be so I dont talk to her anymore..the reason was the whole time over the years with lyme she new i had it
but did not want sickness in her life so she sided with the doctors over me..and this is my mother? this is an enemy to me..so anyway
i found my real mother and she is the most beautiful woman on the planet..i think she has lyme as she is having health issues..i did
the dna test and matched to her.. she really cried when we talked for the first time..i told her about my lyme and what happened years
ago with no one believing me and for the first time i was believed and she is doing research on psuedo tumor cerbri for me..we talk
all the time and we are so alike its not funny..this was about 4 months ago we were reunited..now i know my blood lines and what
runs in my family..thanks for listening
Posted by TF (Member # 14183) on :
overlyme, I would like to know this dangerous lyme doctor's name.
Give us just the first letter of his last name. That is all LymeNet permits.
And, tell us the state he is in. Is it NY state?
Posted by Charlie Fitzgerald (Member # 50657) on :
I concur with some of what overlyme has said!
Sadly, I could of sped up my treatment if I used the right oral antibiotics, such as the antiprotozoal drugs.
Oral antibiotics that work effectively and aggressively against Lyme are few far and between, the John Hopkins study has showed that.
There's an assumption by some LLMDs that using weaker oral antibiotics could push the bacteria deeper too, caused more biofilms and make the bacteria much more resistant.
Remember this is a very intelligent bacteria, when it knows it's being killed, it throws up it's self defense mechanisms. Many living organisms do this in nature, it's just part of life.
On the other hand, if you're dieing because your body is ravaged by borrelia and coinfections, even weak antibiotics can at least stop the infection in its place, preventing it to progress and cause death.
So it's a double edge sword!
It's just expected that LLMDs aren't all equal, life is just that way! Educating people about LLMDs should be important, but considering the fact finding any lyme treatment is scarce, many lyme patients believe longterm antibiotic treating doctors shouldn't be critisized much. So I'd say tread lightly explaining yourself!
Finding a LLMD that treats with IVs is even tougher! My belief is to hit the borrelia infection as hard as possible in the beginning, this is why Dr. B recommended starting off with IVs then orals for those that have chronic lyme.
True, even some may not get better with IVs because of coinfections, but hitting the borrelia bacteria hard and efficiently with coinfection drugs is your best bet.
All else that people claim works on Lyme I'm very much skeptical on, you can bankrupt your account using all these treatments and they might get you nowhere, but I do believe Stevia and other herbals have their uses for bioiflms, keep your liver and kidneys clean(detoxing), plus coinfections. Without a doubt herbals will work on Lyme, but I don't think it's as effective as some believe it is. Very slow, just like how slow some oral antibiotics work.
Dr. H is having success with Dapsone and other mycobacterial drugs. There's a reason why these type of antibiotics are used on Leprosy and antibiotic resistant Tuberculosis, because they work!!!
Sadly, some of them like Dapsone are very strong and have their share of side effects. But you have to weigh the risk to reward ratio yourself and come to a conclusion, being on any antibiotic for 5 years plus can lead to side effects, that's why you have to hit it hard and efficiently.
It is what it is, sadly most do not understand the dilemma with Lyme or scared to even speak the truth on the boards. Some just hop on board with their Rife groups, herbal groups, and alternative groups, then cling to them.
They all think they have the cure, but all I see is people still being sick! It's a very hard disease to treat, seems to be getting harder too with the coinfections and the bacteria becoming more resistant as time goes on... Lyme was not that hard to treat in the 70s and 80s I hear, when it his Connecticut.
Lot of the same stuff went on with AIDs, assumed it still goes on till this day.
People have mental breakdowns because of this, we have to respect each others opinions and beliefs, but sadly progress is slow with this disease. I suspect once an antibiofilm antibiotic does hit the market, it'll be to late because something like Powassan will have taken over...
Posted by Charlie Fitzgerald (Member # 50657) on :
quote:Originally posted by overlyme: i think i am going the holistic route, i am so upset with not just the llmd but that i have a lack of support that my family
gives me..in a life or death situation my own mother did not believe me..wife did not believe me and this is very frustrating for me..
Yeah, I could understand they're ignorance 20 years ago, maybe even 10 years ago. But the amount of celebrities who've spoken about Lyme, such as Alec Baldwin, Shania Twain, Duck Dynasty family, Avril Lavigne... etc... All they're lives being effected...
You think that, along with the John Hopkins study on persister cells would of been enough to put this country in its place about Lyme, but they're obviously still plenty of nonbelievers that this is just psychosomatic.
My opinion, I believe the government, military industrial complex and corporations very much did this for reason, just as the propaganda they've put out on UFOs, Climate Change, etc...
If you're a person of an open mind, you'll find that the government is responsible for putting out disinformation on a lot of these topics. Might have to ask yourself why is that?
A lot of this is too much to handle for most of the public, until it affects them, then what do you do... What they all have in common is, you can't even talk about any of them amongst the public because people get pissed off talking about them.
Most people just stay ignorant because this is they're own self defense mechanism kicking in. If you don't believe in these sort of things, they magically go away, but do they?
Posted by overlyme (Member # 43455) on :
TF that would be in connec...he is still a very
good doc just bogged down in patients..there are
too many lyme patients.I dont want to put down
his first letter of his name..trying to protect
our llmds...
Posted by Brussels (Member # 13480) on :
Overlyme said:
We cant stay on antibiotics forever!
-------------------
That's it.
Knowing that ONE round of Ceftin kills 1/3 of the gut microbiota - which means about 200 strains-,
...and that damage last years according to research, or God knows until when to be 'corrected' (papers suggest 'if ever...')...
... well, imagine what's going on in the guts of people mixing all sorts of antibiotics for YEARS, even more than a DECADE??
Just forget about EXTREME long term antibiotics.
Gut microbiota is one of the most powerful guns we have against new bites, new reinfections.
Destroy it, and next reinfection, you got to re-start treatment from zero again.
------------------------
It's sad that human beings have to rely on CELEBRITIES to believe something.
Why people believe Hollywood celebrities that they only know through show business, and ignore the fellow family members or researchers?
Who's got a damaged brain?
We, with neurolyme / encephalitis or the others, who have to listen to celebrities to believe something actually exists?
Posted by Brussels (Member # 13480) on :
Antibiotics are also disadvantageous because they weaken immune function by destroying beneficial bacteria in the gastrointestinal tract and on the skin.
These bacteria kill incoming pathogens from the environment, which enter the body through the air, skin, food and water supply.
Seventy percent of all pathogens are removed by these beneficial bacteria, so if they get destroyed by antibiotics, then it’s possible for other infections to enter the body and overburden the immune system.
Antibiotics also encourage the creation of “super bugs” which can be resistant to therapy, and they damage the environment and body in a variety of other ways.
I am grateful that antibiotics removed some of the infection from my body, but they also harmed it in more ways than one.
The drugs taxed my organs, caused my circadian rhythm to be disrupted, and caused me to develop a systemic yeast infection (despite taking probiotics throughout the therapy).
I also have blurriness in my right eye as a result of one particular medication.
During the course of therapy, I also became allergic to one medication, and spent six weeks lying on my floor and in my bed, because my liver was so stressed from the medication and I couldn’t even sit in a chair due to extreme fatigue.
While powerful, antibiotics also failed to completely eliminate the infections, so in 2010 I once again began an herbal antimicrobial protocol using NutraMedix remedies.
Posted by Hides1 (Member # 6348) on :
Make sure you were tested for Babesia and Bartonella....
Posted by overlyme (Member # 43455) on :
i have been tested and have both..bart is bad for
me..trying to hit holistically the bart
Posted by minimonkey (Member # 8693) on :
Just a quick note: I got intracranial tension/pseudotumor cerebri from oral doxy. Mino wasn't much better, but I could tolerate it by taking Diamox along with it. Any of the tetracycline drugs can cause this. Antibiotics (oral or IV) are definitely not risk free -- and though I am greatly improved from having taken them, I also had some serious side effects and eventually had to stop with the antibiotics and go with herbals to keep things more or less in remission.
Posted by grandmacow (Member # 50839) on :
Can somebody tell me about to much carbon dioxide in blood.I went in and it was at the top 29. I am still looking for a good lldr near Int'l falls could really use some help here Thanks
Posted by Robin123 (Member # 9197) on :
grandmacaw, you can post in the Seeking a Doctor section - put MN in the heading -
Posted by overlyme (Member # 43455) on :
thanks mini monkey! you understand! how are you?
are you ok?..how are the herbals going?
are you still on diamox? and did it effect your
eyes?
thanks
Posted by Phoiph (Member # 41238) on :
I am happy that the mods have not deleted this thread. LymeNet is progressing.
I attempted to voice some of these concerns in the past based on my own experiences, but my posts were deleted. I was warned that I would be banned from LymeNet if I continued to bring up any issues with LLMD's even in a general manner. (Any other type of doctors were fair game, however.)
I understand the concept of trying to protect LLMD's, however, we do the Lyme community no favors by denying that some practices are dangerous and people have become seriously injured from them.
I cringe when I see certain LLMD's being recommended that had personally ripped me off and/or suggested extremely dangerous practices.
For example, on one occasion I was saved by a pharmacist who refused to fill a prescription given to me by the (fairly well known) LLMD that I had, out of desperation, paid a large sum of money to come to my home (as I was homebound and too ill to travel). The pharmacist warned me that she was restricted in filling the prescription because the drug was regulated and the dose prescribed for me was lethal.
It is very, very important that we consider all people's experiences, good or bad. How else will we learn and protect ourselves and each other?
Yes, we have to be our own advocates, but unfortunately, in many cases, people with Lyme have temporarily impaired judgment and are very desperate and vulnerable.
Posted by lapis29 (Member # 47626) on :
yes, phoiph, agreed and well said
Posted by Bartenderbonnie (Member # 49177) on :
Let's be honest. . .
Lyme disease is BIG buisness, regardless of what route you take !
I have yet to see anyone treat a Lyme patient pro bono out of the kindness of their heart. Not a one.
Why is that ?
Posted by minimonkey (Member # 8693) on :
To answer your question -- the intracranial hypertension went away after I went off the tetracycline class of ABX.... and I went off of Diamox too. I managed to get my lyme more or less in remission, and kept it that way for a few years.... but...
Just this month I was pretty sure I was relapsing, and my doc ordered lab tests. I'm IGM postitive and one band shy of IGG, and that is a test from Quest (who are notorious for missing actual Lyme cases!)
So -- I'm going back on oral antibiotics for a while, alongside a natural regimen, and hoping to achieve remission again that way.
I'm definitely herxing, and that is just from a low dose of Biaxin. We're adding things in slowly so I don't get overwhelmed by die-off. My current doc has a pretty conservative approach medically, but fully supports a holistic protocol.
(breaking up the post for easier reading for many here)
[ 10-03-2017, 11:25 PM: Message edited by: Robin123 ]
Posted by Razzle (Member # 30398) on :
Bartenderbonnie, I just PM'd you...
Posted by Lymetoo (Member # 743) on :
Bonnie .. There's one in CA who does.
Posted by Bartenderbonnie (Member # 49177) on :
My apologies if my comment was misconstrued.
LLMD's provide a life-saving service.
Many of us wouldn't be breathing earth's air without them.
I hold them in the highest regard.
They deserved to be paid.
But most of us are financially bankrupt, desperate, and need to be thrown a bone.
Posted by randibear (Member # 11290) on :
betcha if we were movie stars we'd get the best of care...
Posted by Christopher J (Member # 46401) on :
If your LLMD and/ or his/ her protocol isn't working for you, find a different LLMD. Its that simple. What aggravates a lot of us is you walking in here telling us what is or is not 'dangerous'. Reading your posts, quite frankly I can understand your LLMD getting annoyed with you, you have a lot bizarre unsupported causal leaps going on
Posted by Keebler (Member # 12673) on :
- Christopher J makes excellent points to consider. -
Posted by minimonkey (Member # 8693) on :
Yeah, the intracranial pressure is no joke... and it can be impossible to distinguish an adverse antibiotic reaction from a herx in that regard.
I had to discontinue Rifampin for this very reason -- I was able to make it through the Doxy/Mino in pulsed doses, but I never could tolerate Rifampin (and I'm pretty sure I never got rid of the Bart that we suspect I have had for years.)
I've been hitting the Bart with herbs (also no joke... they can cause some serious herxing too!) -- and I think I am going to take another stab at Rifampin in a few months and see if I can tolerate it this time around, if my doc is amenable to that.
My current doc is a lot more conservative medically than my former one.... uses lower doses, fewer drugs, and more adjunct treatments (herbs, sauna, supplements, etc.)
I seem to be doing pretty well with the current regimen, but I am also nowhere NEAR as sick as I was when I went to see my first LLMD in 2005.... I believe she saved my ability to function, and very possibly my life.
At that point, I was willing to try anything at all if there was any chance it would help... I was so sick I had very little quality of life -- so I knowingly took some risks (such as going on Ketek, which was not a particularly safe drug, but it was incredibly effective for me.)
Sadly, there are no real hard-and-fast answers to how to heal us... so we make the best choices we can. Honestly, if Ketek were still available, I'd probably go on it again. The benefit outweighed the risk, in my case.
Posted by Lymetoo (Member # 743) on :