Aa
lyme diagnosis but can't get antibiotics wtf
so i have been dealing health issues for the beeter part of 4yrs now. severe fatigue heart palps tachycardia but all ekgs come back fine, as of the last 4-6 months been forgetting where i am or why i went to wherever i might be tons of muscle ticks(yes pun intended), severely stiff neck that comes and goes, muscle fatigue/weakness, bad headaches, dizzyness. i'm sure there is more but i don't have all the symptoms all the time so.. anyway i finally found a dr (a naturopath) who mentioned lyme about 1 year ago so i slowly started getting tests done as i have no medical and must pay out of pocket. he convinced me to get the igennix lyme test got the results on mon the 12th of nov. he says i have lyme though doesnt meet the cdc criteria. now i find out he doesnt like to prescribe antibiotics and wants me to do soome 2 month detox program, get checked for heavy metal toxins and treat that if needed, also remove/replace any metal fillings then and only then would begin to actually kill of the da&n spirochetes. wtf! i have lost my job my house missed out on the first year of my daughters life and now can't get antibiotics? here are the results of the igenex test:
IGM IGG
18kda = ++++ 18kda = -
23-25kda = IND 23-25kda = -
28kda = - 28kda = -
30kda = + 30kda = -
31kda = + 31kda = IND
34kda = ++ 34kda = -
39kda = IND 39kda = IND
41kda = ++ 41kda = ++
45kda = - 45kda = -
58kda = +++ 58kda = ++
66kda = - 66kda = -
83-93kda = ++ 83-93kda = -
any and thoughts much appreciated thanx
IGM IGG
18kda = ++++ 18kda = -
23-25kda = IND 23-25kda = -
28kda = - 28kda = -
30kda = + 30kda = -
31kda = + 31kda = IND
34kda = ++ 34kda = -
39kda = IND 39kda = IND
41kda = ++ 41kda = ++
45kda = - 45kda = -
58kda = +++ 58kda = ++
66kda = - 66kda = -
83-93kda = ++ 83-93kda = -
any and thoughts much appreciated thanx
There are some charities that can help fund Lyme diagnosis and treatment for those financially ailing.
One is called:
Lyme-TAP
and the other is:
LymeLight Foundation.
They have somewhat different approaches, from what I have read, so check out both websites.
I have not dealt with either of them, so don't have any impressions, but it's a place to start.
One is called:
Lyme-TAP
and the other is:
LymeLight Foundation.
They have somewhat different approaches, from what I have read, so check out both websites.
I have not dealt with either of them, so don't have any impressions, but it's a place to start.
Hi All,
It is a crying shame that we are all dealing with Lymes and it is a constant scramble to figure out how, what, where and when to deal best with this horrible disease.
The worst part is that if one doesn't have health insurance or money to help themselves- it can be debilitating!
I have a book that may be helpful... It's called Lyme Disease in Australia.
By Nicola McFadzean, N.D
It is great how it really makes sense of it all and ways to treat it through medications or as naturally as possible.
I wish you all health and being able to think and function enough to figure out the best help.
It is a crying shame that we are all dealing with Lymes and it is a constant scramble to figure out how, what, where and when to deal best with this horrible disease.
The worst part is that if one doesn't have health insurance or money to help themselves- it can be debilitating!
I have a book that may be helpful... It's called Lyme Disease in Australia.
By Nicola McFadzean, N.D
It is great how it really makes sense of it all and ways to treat it through medications or as naturally as possible.
I wish you all health and being able to think and function enough to figure out the best help.
I think that's a question worthy of a new thread -- "Successful bartonella treatments to recommend?" -- or something along that line.
It does take a while sometimes for infections to be identified, so as much of a drag as it is to be diagnosed with something you would just as soon not have, it's a good step to at last know it -- because the next step is getting rid of it. Points to your doc for paying attention and responding when you mentioned the marks.
Others here who have had bart can comment more specifically, but I send you good wishes overall -- you're making progress.
It does take a while sometimes for infections to be identified, so as much of a drag as it is to be diagnosed with something you would just as soon not have, it's a good step to at last know it -- because the next step is getting rid of it. Points to your doc for paying attention and responding when you mentioned the marks.
Others here who have had bart can comment more specifically, but I send you good wishes overall -- you're making progress.
so im not sure if i should ask here or start new thread but ill try this first. who here had bartonella and successfully treated it? what worked? i saw my llmd a week ago and out of curiousity asked about what i thought were stretch marks turns out dr is confident they are bart rashes wich since two weeks ago i did notice new ones and that also coincides with me moving up to the full dose of rifampin. the crappy thing is the majority of these "stretch" marks i first noticed when i was 16 but just thought it was from working out, sports etc... anyway im kind of bitching at this point. my tachy isues havent ben happening much only once or twice a week and not at all as bad as before but brain fog is horrible and chest pain, well pain in general but...ughh yeah so any successful stories would help im just feeling really beat up right now. hope all are doing well thanx
Mepron is taken along with Zithromax, and I believe some other anti-Lyme antibiotics cannot not be taken at the same time as Zith.
Zithromax does work to some degree against Lyme, but from what I understand, it doesn't do a very good job of penetrating the nervous system.
Zith in fairly high doses does help some people. The feedback from people with lots of neuro symptoms seems to be that it doesn't do much for them.
Zithromax does work to some degree against Lyme, but from what I understand, it doesn't do a very good job of penetrating the nervous system.
Zith in fairly high doses does help some people. The feedback from people with lots of neuro symptoms seems to be that it doesn't do much for them.
You say above: "I started out with azithromycin, too, but wasn't on it for very long. I think it's a good starter drug to avoid heavy herxing, but it's not a cure."
I had Lyme and babesia, with the following treatment approach (now 5 years ago):
-- Zithromax [azithromycin] and Mepron [atovaquone] -- 5 months
-- Biaxin [clarithromycin] and Omnicef [cefdinir] -- 5 months
which was switched to:
-- Zithromax [azithromycin] and Flagyl [metronidazole] -- 6 months
So ... Zith worked for me.
I had Lyme and babesia, with the following treatment approach (now 5 years ago):
-- Zithromax [azithromycin] and Mepron [atovaquone] -- 5 months
-- Biaxin [clarithromycin] and Omnicef [cefdinir] -- 5 months
which was switched to:
-- Zithromax [azithromycin] and Flagyl [metronidazole] -- 6 months
So ... Zith worked for me.
I am so glad you're seeing a LLMD! That's great news! I started out with azithromycin, too, but wasn't on it for very long. I think it's a good starter drug to avoid heavy herxing, but it's not a cure. As soon as you plateau for a while on any drug, then it's time to switch up to a different one.
Good call by your doc on the Bart. I tested positive for it and started on Rifampin a week after the Zith. I didn't have much herxing on it although my anxiety began to get better. I really improved when I switched to Levaquin. It finished off the Bart for me. I think my case of Bart wasn't that bad.
My Babesia, however, has been rather nasty. I have definitely experienced chest wall pain as part of my herxing. Right this moment, I feel uncomfortable "pressure" on my sternum. I've had some sharp pain, too. When I had a nasty symptom flare of Babesia, my tachycardia bounced back up higher than it had in at least 8-10 months or so. I looked it up and Babesia can indeed cause heart irregularities. I was down to one of my beta blockers every day and a half, but now I am back up to one a day. I also notice my heart rate is irregular when I don't feel good. It isn't arrythmia, it's just inconsistent beating, such as a few strong beats, followed by a 'normal' beat or two, followed by a few weak ones, and then big strong ones again. The vertical bar on my finger pulse oximeter shows how variable it can be.
Are you taking a beta blocker. It definitely helps me. That and magnesium help soothe my irritated heart.
Good call by your doc on the Bart. I tested positive for it and started on Rifampin a week after the Zith. I didn't have much herxing on it although my anxiety began to get better. I really improved when I switched to Levaquin. It finished off the Bart for me. I think my case of Bart wasn't that bad.
My Babesia, however, has been rather nasty. I have definitely experienced chest wall pain as part of my herxing. Right this moment, I feel uncomfortable "pressure" on my sternum. I've had some sharp pain, too. When I had a nasty symptom flare of Babesia, my tachycardia bounced back up higher than it had in at least 8-10 months or so. I looked it up and Babesia can indeed cause heart irregularities. I was down to one of my beta blockers every day and a half, but now I am back up to one a day. I also notice my heart rate is irregular when I don't feel good. It isn't arrythmia, it's just inconsistent beating, such as a few strong beats, followed by a 'normal' beat or two, followed by a few weak ones, and then big strong ones again. The vertical bar on my finger pulse oximeter shows how variable it can be.
Are you taking a beta blocker. It definitely helps me. That and magnesium help soothe my irritated heart.
I had two separate trials of Rifampin and each one was horrific! I refused to take any more. (That's just me----some people can stand it.)
About colloidal silver:
This is from the National Center for Complementary and Alternative Medicine (NCCAM) about the use of colloidal silver:
http://nccam.nih.gov/health/silver
Another article by Tom Grier ("Tom Grier, M.S. Mr. Grier, a microbiologist who is a Lyme patient, writes about the complexities of Lyme disease in a simple, down-to-earth manner easily understood by all.")
http://www.lymeneteurope.org/info/real-concerns-about-colloidal-silver
The concern about argyria (where the skin turns blue) is real but to be truthful, I've not heard of that happening to the people who have used it. But it CAN happen and can't be reversed.
I know that people use it and claim it's beneficial. I won't use it though and not because of a fear of turning blue. :)
About colloidal silver:
This is from the National Center for Complementary and Alternative Medicine (NCCAM) about the use of colloidal silver:
http://nccam.nih.gov/health/silver
Another article by Tom Grier ("Tom Grier, M.S. Mr. Grier, a microbiologist who is a Lyme patient, writes about the complexities of Lyme disease in a simple, down-to-earth manner easily understood by all.")
http://www.lymeneteurope.org/info/real-concerns-about-colloidal-silver
The concern about argyria (where the skin turns blue) is real but to be truthful, I've not heard of that happening to the people who have used it. But it CAN happen and can't be reversed.
I know that people use it and claim it's beneficial. I won't use it though and not because of a fear of turning blue. :)
Well thank you for the responses. And its nice to hear when anyone successfully treats any of these darn things. If I'm being completely honest the last few days I have been being a wuss with the rifampin because the reaction is so bad but after some self induced motivation have my mind back on track to keep going with it. Haha. Also wanted to mention ashwagandha it has helped tons with my energy levels.
My friend successfully is cured from Bart's. I am cured from Babesia (I hope) but I would give anything to be done with Bart's since it affects me neurologically.
I take rifampin, and my first round was terrible herxing. I started at 150 MG and I am up to 300 MG twice a day.
Glad you found a good LLMD.
I take rifampin, and my first round was terrible herxing. I started at 150 MG and I am up to 300 MG twice a day.
Glad you found a good LLMD.
I'm glad your doc is in the loop! Sometimes people start freelancing in how they reduce or change their meds, and that way lies (more) misery. Hang in there -- it's definitely a battle worth fighting against the bugs.
@jackie, yeah my dr said for now take one pill every other day is fine. when i initially told her about the reaction i was getting she thought it was just a reaction to the med. but since the majority of my symptoms have been cardiac related and chest pains and dizzyness i told her i believed it was herx and so she agreed to continue but to monitor reactions very closely.
Sounds like you're making progress too, but progress can be ever so hard ... as you know.
Has the doc okayed taking rifampin every other day in half a dose? I wouldn't do it without the doc's okay as to timing and dose. Otherwise you could be creating drug-resistant bacteria.
Hang in there!
Has the doc okayed taking rifampin every other day in half a dose? I wouldn't do it without the doc's okay as to timing and dose. Otherwise you could be creating drug-resistant bacteria.
Hang in there!
been a while since i posted anything. i have been with an llmd since the middle of jan was put on zithro and for about a month and a half was doing pretty good. but hit a wall. as of late my llmd thinks my major problem is bartonella. so about two weeks ago dr added rifampin to the mix. holy crap awful herxing. has anyone here successfully treated bart? i am supposed to take two rifampin a day but can only tolerate one pill every other day. its definately frustrating since i was feeling at least a little better and now that we added the rifampin im back to feeling horrible most days. anyway enough whining hope everyone else is making headway in their treatment.
Some co-infections like Bartonella, give many people, like myself, neurological problems, Babesia, which is a cousin of malaria, gives you other symptoms. For me I had air hunger and the sweats with a dry cough.
If you read Burascano's guidelines like Jackie suggested you may be able to pick out a co-infection that you have then you might start with herbal treatments.
Burascano recently spoke at the 2012 ILADS conference and says that almost everyone with Lyme has a co-infection.
Good luck!
If you read Burascano's guidelines like Jackie suggested you may be able to pick out a co-infection that you have then you might start with herbal treatments.
Burascano recently spoke at the 2012 ILADS conference and says that almost everyone with Lyme has a co-infection.
Good luck!
I hear you -- hope it goes well -- keep us posted!
(It was mentioned in the messages above, but Burrascano's treatment guidelines are worth reading on the ILADS website, for both you and your naturopath. There is no hard-and-fast, one-size-fits-all treatment approach, since much depends on what co-infections you have and how long you've been infected. Combine that with the individual variations in immune system function and the different strains of Lyme, and the number of variables to account for gets big pretty fast. That's why the different treatment approaches and so-called protocols vary -- partly it's the still-developing understanding of Lyme and partly it's the interaction of various infections, strains of those infections, and your own immune system.)
Wishing you well ---
(It was mentioned in the messages above, but Burrascano's treatment guidelines are worth reading on the ILADS website, for both you and your naturopath. There is no hard-and-fast, one-size-fits-all treatment approach, since much depends on what co-infections you have and how long you've been infected. Combine that with the individual variations in immune system function and the different strains of Lyme, and the number of variables to account for gets big pretty fast. That's why the different treatment approaches and so-called protocols vary -- partly it's the still-developing understanding of Lyme and partly it's the interaction of various infections, strains of those infections, and your own immune system.)
Wishing you well ---
yeah i wish i could figure out a way to get the money to see a llmd but for now i can't do it. however i know my naturopath consults with a couple of local llmd's in my area regarding my case so... hopefully somethin will start to help.
My doc used Flagyl.
But in the larger picture, Lyme treatment is not a do-it-yourself project. It's a complex disease with a number of other diseases (co-infections) that often come along with Lyme. Each of these infections, Lyme and the co-infections, need different meds and combinations of meds.
It's nice that the naturopath is trying to help you, and I know it's expensive to see an LLMD, but Lyme isn't a case of the flu that will eventually go away by action of your immune system. Lyme can have real, serious, long term effects, and the longer it goes untreated, the harder it is to get rid of, and it can have long-lasting effects once established.
But in the larger picture, Lyme treatment is not a do-it-yourself project. It's a complex disease with a number of other diseases (co-infections) that often come along with Lyme. Each of these infections, Lyme and the co-infections, need different meds and combinations of meds.
It's nice that the naturopath is trying to help you, and I know it's expensive to see an LLMD, but Lyme isn't a case of the flu that will eventually go away by action of your immune system. Lyme can have real, serious, long term effects, and the longer it goes untreated, the harder it is to get rid of, and it can have long-lasting effects once established.
yeah i think since my doc is a naturopath and not specifically an llmd he tries to do everything naturally as much as possible. out of curiosity what antibiotics are capable of busting up the cyst forms? i havent stumbled onto any mention of that before. and yes having so much "information" available i.e. internet can be good and bad regarding any health concern too easy to get misinformation.
Ah, got it. My Lyme doc is an all-antibiotics-all-the-way kind of guy, so I don't know much about the herbal approaches.
If you're head is clear enough to do reading on the topic, roaming around the web (with a skeptical eye) can provide a lot of information on these things, always with the caution that some percentage of it is wrong, misleading and/or dangerous. ... then again, docs can be that way too sometimes. heh.
Hope you're feeling better soon --
If you're head is clear enough to do reading on the topic, roaming around the web (with a skeptical eye) can provide a lot of information on these things, always with the caution that some percentage of it is wrong, misleading and/or dangerous. ... then again, docs can be that way too sometimes. heh.
Hope you're feeling better soon --
i believe that was part of the idea behind the samento/banderol combo which i did for like two weeks, also i have been looking into something called serrapeptase.
I don't recall if anyone above has already mentioned the need for cyst-busting meds to crack the door open so doxy can get to the Lyme bugs to kill them. Doxy seems to work in the earliest stages of Lyme before the bacteria are able to hide themselves in a cyst form that doxy can't break through. Did your naturopath discuss that aspect?
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
