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Antibitoics either way??? HELP
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Antibitoics either way??? HELP

Hello All,

   I will list my symptoms below. However, my main concern is this: I have been struggling with my symptoms for three months now. I like so many of you went from being a normal, high-functioning adult who barely sees a doctor ... to a person barely getting through work everyday and seeing every doctor know to man with no definitive answers! Finally my primary doctor decided to do a Lyme disease test. I tested positive on the initial screening and then negative on the Western Blot. Rather that brush it off as just a "false positive" he suggested I go see an infectious disease doctor, and through my own research, I realized what I really needed was an LLMD. So, I found one and he examined and "listened" to me and said that based on my symptoms it is certainly likely that I have Lyme disease. However, he said we need to send the blood to one of two labs: Igenex or Clonogen.... we went with Clonogen because they take my insurance while Igenex would require me paying 1400 dollars up front. Anyhow, proceeding this he says the treatment will involve a progressive round of antibiotic that would last two months if the test cam back positive... and THEN he says even if the test comes back negative there is a strong chance I still have lyme disease and would then have to decide if I wanted to take the antibiotics anyway, which he described as "therapeutic antibiotics" and of course he warned there could be side effects.... The test takes over THREE wks to come back from the lab. When I asked him what to do between now and then he replied: "You will just have to muddle through" heartbreaking! How did those of you going through this, go through it??
THE DILEMA: If he is most likely going to prescribe the antibiotics either way... why didn't I start them already??
Has anyone done "Therapeutic" antibiotics for lime?

SYMPTOMS:
My ears feel plugged up/slight ringing (like when you are on a plane)
Off balance when walking
lightheaded/dizzy ALL the time
tingles and numbness in arms/fingers and cheeks
sensitivity to light/blurred vision/halos
can't sleep
anxiety/panic attacks
palpitations (irregular heartbeat detected)
depression
soreness just under ribs
weight loss
FATIGUE

TESTS:
Blood work galore (including Epstein Barr) only thing so found (Vitamin D deficiency)
Brain MRI: clean
Spinal MRI: clean
Ear Nose and Throat DR./Hearing Tests : Fine
Cardiologist -Stress Test/Echo/EKG/wore 24 hr heart monitor (irregular heartbeat)

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21 Comments Post a Comment
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Avatar_f_tn
Good question.  

I don't know why 'muddle through' is the answer, except that maybe the MD feels it is more defensible to have a positive Lyme test before beginning treatment.  It's more than a fair question -- I would suggest you ask the MD exactly what you said here.

Did the MD test you for co-infections of other diseases that sometimes are carried by the ticks that carry Lyme?  The co-infections sometimes need different antibiotics than Lyme.
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428506_tn?1296560999
Your doc may want to wait for the test results to help both of you, as insurance companies will raise less of an eyebrow if you have more definitive tests.

I can relate to feeling frustrated to need and wait even longer to beginning your treatment.  Did your LLMD give you any instructions in the mean time?  Many LLMD's encourage supplements and lifestyle (diet, exercise) to support Lyme treatment.  Perhaps ask about that so that you can feel you are doing something productive while you are waiting for the labs?

I got testing through Igenex, and it was about 3 weeks with them as well, fwiw.

Lyme did very much so interrupt my life, but by sticking with treatment and hanging in there, I'm getting it back, and I learned some character-building lessons along the way.  Treatment can be slow and frustrating, so try and keep the big picture in mind.

Let us know how the tests come back, and I hope things start looking up for you soon!
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Avatar_f_tn
Good point about insurance, Wonko.
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1329847_tn?1275176334
Thanks so much for reading and responding! I'm curious what your doctor told you to do while waiting for results?
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Avatar_f_tn
What did my dr tell me to do while waiting for the test results?  Nothing.

Thinking back, I think my LLMD (who is quite aggressive with treatment) didn't prescribe anything until the lab tests came back, like you.  Don't know that that is much consolation, but there it is.
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Avatar_f_tn
Did he test your ANA?  The only "therapeutic" antibiotic I am aware is hydroxychloroquine or plaquenil for those with a slightly elevated ANA.  Some people create anti-nuclear antibodies as a result of fighting an infection like lyme.  This antibiotic also helps with inflammation in general.  
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1329847_tn?1275176334
ughh tests came back negative and all the co-infection tests came back negative...though he still talks about doing a trial of antibiotics because I still feel the same way! he tells me all the horrible side effects that can come from taking antibiotics for two months...and then asks how do you feel about this??? I DO NOT know what to do.
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Avatar_m_tn
I have a similar story...however my Igenex test came back indeterminable. My doc said there was definitely something there.

The abx(antibiotics) are hard on the kidney and liver. I would suggest you supplement for support.

I am on my second round (3weeks) of Doxy and supplements, so we will see what happens. My symptoms are almost exactly the same as yours. I also have Thyroid issues.

Let me know if you have any other questions.

Take care be positive....i know very hard... I have cried more than I should
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Avatar_m_tn
Did you ask your docotor if he/she has ever cured anyone of Lyme using anti-biotis? I don't know one docotor that has. Anti-biotics are not the answer and never will be. I was on them for 2 months (4000 mg a day) and stopped. I am now coiling and using sea salt/vit c and feeling better then ever. My symptoms are almost gone. I have had Lyme for over 20+ years but was diagnosed 6 months ago.
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Avatar_f_tn
Frustrated etc.:

I can understand your strong feelings on these matters, but making flat statements like "Antibiotics are not the answer and never will be" is a bit over the top imo.  Please consider that there are people who come here feeling very fragile and fearful and would simply be alarmed by such statements rather than being persuaded.  Presenting arguments and reasoning is helpful to us all, and hearing about your experiences with Rife and Salt/C would be interesting.  Thank you.
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Avatar_m_tn
Do you know anyone or any docotor that has ever cured anyone from Lyme using anti-biotiics?(Please answer this question because I have asked ever person that supports anti-biotics and no one will answer it) The thing is doctors can't cure anybody using anti-biotics. And I know soo many people who have been on them for years and have terrible complications because of them. If no one tells them they are bad and don't work they will just keep taking them as long as their doctor keeps telling them that. People need to hear the opposite of what doctors are telling them so they can start asking questions instead of just taking what their doctors says as being the right way.

I am sorry if I may have hurt your feelings or someone elses but this is a serious disease and if no one is going to stand up for what is right and speak out then we all suffer. Did you know this disease was a biological warfare mishap by the US government back in the 50's? The out break started on Plumb island off the coast of Lyme conn.
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Avatar_f_tn
Yes, I do personally know that Lyme can be cured by antibiotics.  I personally believe that a combination of treatments and approaches may be better.

If you read this website, you will see that we are hardly rolling over to do what the MDs say.  Many if not most of the comments here discuss the non-CDC/IDSA approaches to Lyme+ and dispute the positions of the CDC/IDSA that Lyme is hard to get and easy to cure.  That is exactly the opposite of what you allege.

You should do some more study on the origin and identification of tickborne diseases.  The diseases have been described for a very long time before the bacteria were visualized and identified as the cause.  There is for example an interview with Willi Burgdorfer in the back of Bryan Rosner's 'Top 10 Lyme Disease Treatments' book which discusses the discovery process.  I have read other accounts elsewhere referencing descriptions of such diseases going back well over a century or more.  You are entitled to believe in government conspiracies and the uselessness of antibiotics, but I find it more productive to focus on the diseases and their causes and cures.

If you believe you are "stand[ing] up for what is right and speak[ing] out" then please do so productively instead of destructively.  If you have anything positive to contribute rather than making flat and unsupported statements such as "doctors can't cure anybody using anti-biotics", then please do so.  You are doing exactly what you accuse the MDs of doing:  claiming to be right and offering no evidence.

I again ask that you consider the feelings and high emotions of our fellow Lyme+ sufferers in making inflammatory and not particularly productive postings.  
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Avatar_m_tn
What is the persons name that has been cured using only anti-biotics. I would love to contact this person and learn more. Please advise. Thanks.
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Avatar_f_tn
No, and I won't ask them for their permission to do so.  
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Avatar_m_tn
or better yet the name of the doctor who treated this patient.

So why did they name this disease after Lyme Conn? Because it was discovered 100 years ago if a far off land in another country? It wasn't on an island off the coast of Lyme Conn. were the epi-center of this disease where Nazi doctors were doing experimental testing of disease and injecting the Lone star tick from Texas which was never seen in Conn. till the outbreak.

How come you never hear about Lyme on the news? How come most doctors don't know about the disease and some refuse to talk about it? If this was something that just happened in nature like most disease's why isn't it talked about in every docotrs office since it is so bad? This is worse then Aids but you never hear about. Why is the CDC's testing all wrong? In order to become positive in the eyes of the CDC you have to have 5 positive bands. Most of the people I know have had 2 or less? Is the CDC not smart enough to figure this out? Have you seen the movie"Under My Skin" which talks about the coruption in the health dept and the CDC trying to cover up Lyme and the seriousness of the disease?
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Avatar_m_tn
Why doesn't this pserson come on here to tell their story so others can benefit from there success?
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Avatar_m_tn
Isn't that what this forum is about?
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1210011_tn?1281475965
This is a small lyme forum with little activity. Very small pond if not a puddle.

There are other websites that post "success stories" or have a running thread where people post. A woman who is training to run the NYC marathon this fall had a major battle with tick-borne disease. These stories are easy enough to find.

Some individual's systems cannot handle antibiotics, perhaps have a genetic predisposition or other factors, while others have systems of steel. I've heard stories on both sides.

My family have the ones of steel, Thank God. My sister was declining so badly that she would be in hospice care if it weren't for a relatively brief stint with IV antibiotics (too bad insurance wouldn't cover the treatment longer). And I am very thankful to have her still with us.

Both of us come from holistic backgrounds so for us to have taken antibiotics never mind her having had IV treatment is saying A Lot.

Most LLMDs, if not all who are considered LLMDs by lyme patients, do not treat solely with antibiotics. Most are integrative and some holistic.

I'm sorry if antibiotic therapy was unsuccessful if not detrimental for you. But it's not the case with everyone, as I'm sure you know, each case of lyme is not just lyme, it's complex often involving other tick-borne diseases and no two individuals have the same genetic predispositions or weak points.

So: antibiotics do work for some people, not all, some. And like most people with chronic or persistent illnesses, we use adjunctive or supportive therapies as well. Everything we can to get well or at the very least better.
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Avatar_m_tn
Thank you for your response.

Unfortunately I have never heard a success story from an idividual or a doctor, LLMD or any other.

Do you know of anyone?
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Avatar_m_tn
I have come accross many, many people who swear by anti-biotics and I have asked them the same question. Do you know anyone who has ever been cured by anti-biotics. I have yet to hear a story or get a name.
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Avatar_m_tn
But it is a well known fact that these bacteria eventually become immune to anti-biotics and can go into cyst form to hid from any effects it may have. With that said I don't know how anyone can be cured from it. I understand in some cases you may need to use IV anti to get someone who is really bad but other then that.
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