posted
i just finished up a few months of treatment two days ago and was feeling better...until last night!
i feel like i have the flu...can't sleep,achey,nausea, feverish etc. i remember feeling this way right before the bulls-eye rash showed up on me.
is it possible the infection came back or could it just be winter germs?
Posts: 35 | From New Jersey | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Were you symptom free for two months when you stopped abx?
If so, it might be the flu. If not, it's most likely the Lyme.
-------------------- 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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So sorry to hear this.
Yes, as SixGoofyKids points out, it is recommended to be symptom free for two months before stopping abx.
Were you being treated by an ILADS-educated or ILADS-member LLMD?
Was your treatment combination treatment? Did your doctor follow ILADS guidelines, or Burrascano's guidelines, or an individualized protocol?
Were you assessed for co-infections, too?
Have others you've been around lately had the flu (or have you recently traveled)? Is a flu strain going around your community right now?
Do you have any olive leaf extract? You might ask your doctor if that would be a good thing to use until you can sort of out if this might be the flu. Olive Leaf Extract should help in any case. Or your doctor may have other suggestions.
And, yes, you might require additional treatment. One researcher says 30 weeks' treatment is the minimum:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
Excerpt:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
=====================
Remember that you are well on your way and this may be just a blip in the screen. It's good that you are pro-active so that whatever this is won't undo too much of the progress.
quote:Originally posted by adamm: Lyme is incurable, and to have any shot at a permanent remission, they say, you need to treat for 2-3 past the resolution of all symptoms.
you should check out lyme-info.net and lymecryme.com
That would mean that there is no one that has been diagnosed and then treated for Lyme and gotten totally better. So to say it's incurable is simply not the case because there are hundereds if not thousands who are symptom free after treatment.
You wont find many up on this site symptom free cause we are the ones who have it chronically but the fact still remains that many have.
You will always have antibodies just as you do for the measles but to say incurable is misinformation to someone asking a valid question.
Dont turn your misery into someone elses. There is enough misery to go around.
Posts: 59 | From CONNECTICUT | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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While I do wonder if you got proper treatment (as some details are incomplete), still, it's hard to know now if you have a flair of lyme or a flu.
Although, technically, there is no cure for lyme, many have gotten better when the correct infections were addressed and supportive measures were taken. Continuing with excellent self-care, then, may be all some need.
While you may always need to be alert to signs of a flair in the future, armed with information and an action plan that you would swiftly incorporate, a downward spiral need not happen.
as for being symptom free two months ago... the only problems i was having were fatigue and random stiffness (in hands, knees sometimes).
i'm not sure if he is an ILADS member but I was referred to my llmd by BettyG on here.
when i was first diagnosed in may, the physician assistant put me on 2 weeks of doxy. then i saw an infectious diseases dr. who prescribed 3 more weeks of doxy.
i believe i was tested for co-infections by the ID and they came back negative.
i had a 2 week break until i saw my LLMD. he put me on azithromycin and i took that from the beginning of august until now. i just recently had a final blood test from lapcorp.
my mom and her boyfriend have recently been sick with something that sounds similiar to what i'm feeling, so maybe i picked up germs in our house.
thanks again for your help. happy new year!
Posts: 35 | From New Jersey | Registered: Jul 2008
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posted
now that i think about it, i still feel tired throughout the day (but not totally beat). im not sure if this is me being lazy or something that i'll have to live with forever.
what is olive leaf extract for?
i forgot to mention i scheduled an appt a while ago for mid-jan with my LLMD in case any of my symptoms came back.
if i feel better before then...would you recommend keeping it? i know it couldn't hurt to go but i am paying out of pocket and it's a bit pricey.
Posts: 35 | From New Jersey | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Angela,
You might want to look over the materials below and see if your course of treatment was similar.
I'm not sure about Labcorp for testing.
So, the ID doctor and your LLMD are two different people?
You certainly got treatment longer than anyone who would see just an ID doctor, but getting just one drug at at time with nothing for the cyst form has me wondering.
Have you connected with your local support group? If so, how are the others doing who also see the same LLMD?
As your mother and her boyfriend currently have some sort of "bug" you may well have that, too. Still, can you call your LLMD?
Do you have some of the supportive measures around from your treatment? Garlic/Allicin, or Olive Leaf Extract might just be enough to pull you out of this sooner.
Black Elderberry Extract is also excellent.
Singleton's book also has great advice. I'm hoping your doctor suggested that to you and you have it to refer to now.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
posted
My apologies- a bit of clarification. I didn't
mean to suggest that one couldn't permanently
clear all of the symptoms of this. In fact, if I
thought that, I'm not sure I'd even be here.
According to everything I've read, though, disseminated
Lyme is like herpes; the pathogens cannot be
completely cleared from the body with current
treatments, and there is thus always a possibility
that they can cause illness again.
Many certainly have gotten and stayed completely well(although the keys for everyone are
different), and I do believe that it is something we
can all reasonably hope for...
if we remain vigilant about taking care of ourselves.
Sorry if I came off as too much of a downer.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Angela,
You must have been typing as I was composing my post, so, whether this LLMD or another, as you are still experiencing fatigue, Yes, I think you need to pursue treatment - however that would work out.
Perhaps, your adrenal support measures need adjustment or your liver support is not enough. What has been your heavy metal assessment/treatment?
Still, a good LLMD should have a better idea.
It is not normal to be tired all the time.
It is not normal to be tired all the time.
It is not normal to be tired all the time.
Really. And, random stiffness can also be a clue that you may not be out of the woods.
Push for success - it may take a while still but, with fatigue, you certainly still need medical care. It may or may not still be lyme as the major player but something is going on if you are tired all the time.
Did your doctor address lyme biofilm when treating?
In addition to retesting for Tick-borne co-infections at a different lab, you might also consider other kinds of chronic stealth (hidden) infections such as Cpn, HHV-6, mycoplasma?
[ 02. January 2009, 07:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Adamm,
I know you are just trying to protect people. I have this problem, too. It can sound like a downer trying to make sure everyone is aware of the pathogen's longevity and the serious nature of staying ahead of it.
Your additional note helps a great deal to put it in perspective.
I saw an excellent interview just a couple nights ago on "Charlie Rose" when he spoke with two HIV/AIDS researchers.
They explained that while, technically, there is no cure for AIDS, still, there are some who (as long as they stay on their meds) can lead a good life, free of many symptoms. A few others defy science and have done exceedingly well.
So, while it is vital to intimately know the spirochete's nature and pay attention, there are ways to avoid being tossed into an eternal downward spiral.
posted
how do i know who else is being treated by my llmd?
i have not had a heavy metal assessment or looked into the other infections you listed, nor do i know anything about a lyme biofilm.
i was told that i do not need to take any additional supplements besides probiotics....so i havent been taking anything but that and a daily vitamin. from your experience, do you think i should seek another llmd's opinion?
Posts: 35 | From New Jersey | Registered: Jul 2008
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bettyg
Unregistered
posted
quote:Originally posted by Angela:
how do i know who else is being treated by my llmd?
my suggestions are:
edit your subject line here by clicking on pencil, which opens up subject line and text.
add to subject line, do you see Dr. ... in New Jersey? please send me a private message, 2 people standing together, and share your experiences ok! thanks
2nd is using this yahoo forum:
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
******************************************* good luck angela!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Angela,
While the referral lists have names of doctors usually referred by patients who have achieved some level of success, sometimes, somehow, names get on the list for no apparent reason. This happened with my state. I called around and got the door shut in my face. One doctor on the list would not treat beyond a few days.
As for how to find others who may see your doctor, you can also contact your local support group - see menu to the left of this page.
If your doctor said you need no other support measures, I have concern that he is unaware of the support that is nearly vital for adrenals and liver support. Liver detox - addressing the neurotoxins and getting them out - is very important.
A toxic liver will quite easily cause depression, by the way.
In the guidelines and book above you will find more detail.
I am so sorry if I've tossed confusion your way. You might see what your other options are with another LLMD, one who offers a more encompassing protocol.
First, I'd call your current doctor's office and ask if he treats by the ILADS guidelines.
Then, maybe ask him - talk with him in an appt. - as to if he'd use a different lab for testing or assessing co-infections.
Then, adrenal and liver support methods.
If your doctor is not familiar and comfortable with all this, I hope you can find a doctor who can offer you more.
You should NOT have to settle for less than a complete offering. And, these days, I question any doctor who does not first try to eliminate the underlying reason for depression (infection, stressed liver, weak adrenals, low magnesium levels).
posted
Hey for what it's worth its been over a year later and im 100% better. Had Lyme and the Babs.
6 months of IV Roc with 3 months of Mep/Zith. Completely symptom free and have been for about 8 months now.
Kind of ironic I posted here when I felt like DEATH and here I am as normal as I have ever been.
I was very, very, very I'll at one time and as miserable as a human being could possibly be. And thats no BS! I wasnt one of these that was a little ill and got better. I was on my death bed and came back.
It can and does for most. Many up here would beg to differ but hope is real and reachable by most.
Posts: 59 | From CONNECTICUT | Registered: Sep 2008
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Gnbrett - Were you on anything else with the Rocephin?
Posts: 2232 | From USA | Registered: Aug 2009
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posted
No I was not other then the Vitamins and supplements and Actagal. No other ABX's other then what's listed.
Posts: 59 | From CONNECTICUT | Registered: Sep 2008
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WildCondor
Unregistered
posted
Some of the above (and older) posts are shameful. Lyme is curable. Don't listen to anyone who tells you it's incurable, ever.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The cystic form lives in the tissues so not only is it very difficult to kill because of it's form but also because it often lives deep in tissues where antibiotics or other killing agents are not able to penetrate very well.
WC - there is no proof one way or the other but I believe there are many who feel it is not curable in the same way that EBV or other viruses cannot be entirely eradicated from the body. As with viruses, it can and does reactivate when immune system function is down.
No one has said anything shameful. It's best to know the whole story which unfortunately can be scary and disturbing. One can end up going for years with a reactivated infection because they didn't know it could happen. They thought they were cured. I've seen it many times in people diagnosed with Fibromyalgia or Chronic Fatigue Syndrome.
I believe that many can live a normal life with proper treatment, especially if it is administered early in the course of the infection.
In my opinion, chances are much better for long term remission if one makes sure that there are no untreated co-infections.
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My apologies- a bit of clarification. I didn't
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