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Posted 12/29/2016 5:02 PM (GMT 0)
Hi I am relatively new to Lyme Disease and here is my story. I was diagnosed with Lyme disease 8/26/16. It started as minor back pain and just feeling under the weather and progressed to stiff neck, high fever, headache, sweats, fatigue, pains all over, basically worst 3 days of my life. I finally found a large bullseye rash on my inner thigh and went to an urgent care office and was diagnosed and put on 21 days of doxy. I instantly started getting better the next Wednesday I was tested and was positive 3/3 bands igm western blot. I finished my meds and by the start of last week I was symptom free. I continued to be symptom free for two maybe 3 weeks after.

So beginning of October I start getting strange symptoms starts with feeling fatigued again off and on, eye floaters, brain fog, dizzy feeling, muscle twitches, achey off and on. I went back to my dr and was told I was dealing with post treatment Lyme disease. He told me about 20% of people get it and it could take awhile to clear up. I took his word but asked for another round of doxy which he gave to me. I took it and it really didn't do anything but upset my stomach for a week or so. I am now a little over 3 months since finishing my first round of abx and I am still having the symptoms that come and go. Lingering symptoms.

My question is has anyone had these symptoms just go away after awhile without excessive use of antibiotics or herbs? I definitely do not believe I am still infected or that you need to be treated with an insane amounts of antibiotics unless you've had this for along time meaning years. I have been tested every month after my first positive test and the Lyme titers are not positive anymore. Can anyone share similar stories?
Posted 12/29/2016 5:07 PM (GMT 0)
Hi Mamala,
Welcome to our community. I'm so glad you found us.

I'm sorry to say, but you still have active Lyme and the symptoms may cycle, but they won't go away and the damage will continue until you are treated sufficiently.

Not testing positive only means that your body is not making antibodies because your immune system is lowered - it's a well known fact that Lyme inhibits the immune function.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

It's clear by your post that you will not get any more help from your doctor, so you will need to see a ​ Lyme Literate Medical Doctor(LLMD) in order to get the help you need to heal. These are not like 'regular' infections, as the bacteria is one of the most complex bacteria known at this time - it can literally hide from the abx (antibiotics) and the immune system.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained LLMD in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org


​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf
Posted 12/29/2016 5:12 PM (GMT 0)
Hi mamla. No, they won't just go away, the bacteria(s) are still in you at work, your doxy was too limited in time and effectiveness.

I'd like to welcome you to our forum and urge you to read our intro "New to Lyme?....start here".

You need preferably to see an LLMD which is lyme literate medical doctor. Most do not take insurance however. There are many approaches to treatment, but all are generally much longer in length than how we normally treat the usual infections. We can help you find someone in your area.

There is antibiotic treatment(abx) that works best if 2 or 3 kinds are used in tandem. Mono treatment is seldom successful. Many use an herbal treatment which comes in various forms and protocols. Some of which can be used in conjunction with abx.

We have people here that have used and are knowledgeable about using bee venom as treatment, as well as a handful of other methods. Abx and herbal are the most popular.

Also, treatment of any kind needs to be kept up for at least 2 months past having any symptoms.

We are here to be supportive both with suggestions, experiences, and as a place to come for understanding empathy.
Posted 12/29/2016 5:14 PM (GMT 0)
Well that was quick and again I don't believe in llmds, I think they take advantage of people by making them believe they need all these drugs without any evidence of them working. It's called a scam to make there money. So anyone with experiences similar to mine?
Posted 12/29/2016 5:15 PM (GMT 0)
Sorry Traveler, my typing/mind is slow this morning. At least she got 2 matching opinions! Haha.
Posted 12/29/2016 5:25 PM (GMT 0)

mamla1520 said...
Well that was quick and again I don't believe in llmds, I think they take advantage of people by making them believe they need all these drugs without any evidence of them working. It's called a scam to make there money. So anyone with experiences similar to mine?

I'm sorry. I didn't see where you'd said you were seeing an LLMD. Perhaps he fell under the category of claiming to be an LLMD, but not one that follows ILADS recommendations.

There are other methods besides abx, as I mentioned, so if you have given some thought to your next course of action, again we would be glad to offer suggestions and experiences that helped us, which you must realize will vary in degrees with everyone since our infections are specific to our body and our reactions will be individual somewhat in reactions to treatment.

The focus to healing is getting your immune system in good shape and staying that way.
Posted 12/29/2016 5:49 PM (GMT 0)
I'm really sorry you feel that way, mamla, as while I can't speak for every single LLMD out there, I do know that most of them take great risk with their careers to try to help Lyme patients. Many have lost their license trying to help Lyme patients, and NOT because they were doing anything other than not following IDSA treatment guidelines, even though they were removed from the National Guidelines Clearinghouse a while back.

There are MANY people with similar experiences to yours.Those that begin to see the truth of an ongoing infection will find a way to get better, more effective treatments and will regain their health, but those that don't seek out more treatment only end up right back to where they were, and often much, much worse. The evidence is out that Lyme has persister cells that not only resist abx treatments, but will continue on multiplying and doing damage to the body.

I have had these infections for the last 45 out of 46 years, and only learned about what I had after 40 years of living with them, so I know what kind of damage and dysfunction happens on a first hand basis, and I was one of the lucky ones, as it did not affect my heart seriously. I would encourage you to learn more about these infections and understand that you really do need more treatment. We don't want anyone to have to try to live with these infections ongoing, as you have (evidenced by the return of symptoms).

We would love to be able to present you with scientific evidence of any of the things that you doubt, so if you would share those with us, we may be of help. You can also search this forum to find posts that interest you.
Posted 12/29/2016 5:52 PM (GMT 0)
I'm not seeing one. Again I don't believe they are even real doctors that's why they aren't covered by insurance. They take people's money, prescribe antibiotics and a year down the road people think they are healed from them when really there body just needed that long to recover.
Posted 12/29/2016 6:01 PM (GMT 0)
Mamia,

Welcome to the board.

I had a very similar experience to yours. Bit in July 2016. Went to my internist who told me most ticks don't have lyme. Went home. Ten-twelve days later had stiff neck, vertigo, bulls-eye. Internist said I had lyme and gave me two weeks of Doxcy. Still sick two weeks later. Went to an infectious disease dr who specializes in Lyme, half of his practice IS lyme. He said three weeks is too much meds but gave me an extra week because we have a mutual friend. I was still sick. Found this board.

LLMD's are very much real doctors. Lyme has a steep learning curve. Once you understand what these doctors risk, how much they have to know about every single bodily system, co-infections, proper testing, antibiotics AND herbs you will see why it is a labor of love and care for them NOT a money making scheme. They could make their money a lot easier, believe me.

No one is perfect and Lyme is different in each person. I finally went to an LLMD at the insistence of this board and was happy that I did. I found out I already had lyme (makes sense too based on a few odd things), co-infections, etc...

No one here is going to try and convince you to go. We all have free will. You may find that you want to use herbs, many of us do. There are options.

Come here, ask questions and I wish you a very speedy recovery.

If this was your first bite you caught it fairly soon and that is usually a much faster healing.
Posted 12/29/2016 6:11 PM (GMT 0)

mamla1520 said...
I'm not seeing one. Again I don't believe they are even real doctors that's why they aren't covered by insurance. They take people's money, prescribe antibiotics and a year down the road people think they are healed from them when really there body just needed that long to recover.


They aren't covered by insurance because they know better with proper treatment of Lyme not to turn claims in at all. Insurance companies are running the financial show on tick born diseases. These diseases are not all cut and dry to 'get rid of'. They don't want to be paying out on what they consider 'experimental'.

The insurance companies are 'in bed' with the members of the Infectious Disease Society of America which set the standard of treatment for the CDC. If claims are filed for Lyme treatment beyond 30 days they will take action against the physician and have his or her license to practice taken away.

If you choose to believe this is only a conspiracy, we can't change your beliefs, but again we are here to help you find healing through whatever course of action you feel good about.

Have you given that any thought, as to which way to go from here?
Posted 12/29/2016 6:17 PM (GMT 0)

mamla1520 said...
I'm not seeing one. Again I don't believe they are even real doctors that's why they aren't covered by insurance. They take people's money, prescribe antibiotics and a year down the road people think they are healed from them when really there body just needed that long to recover.

Not true - the reason why they don't take insurance - as more and more doctors are going to - is because they don't wish to be dictated to about what they are allowed to use to treat their patients. I was seeing a MD that didn't take insurance and she was only treating thyroid and adrenal issues, but refused insurance for the very same reason. I had to deal with my insurance when THEY decided that I no longer needed to be on my thyroid meds, despite my doctors recommendations, and my symptoms.

And, as I said, you really need to learn more about persisters. These are the bacteria that are antibiotic treatment resistant, and Lyme also lives in the tissues, not in the blood stream as many other infections do. This means that short term abx will simply NOT kill enough of the bacteria, and many of those bacteria that are in the blood stream will change to a form that nothing can kill them (called round body or cyst form).

Most LLMD's do not charge any more than other doctors that don't take insurance, and to verify this, you can call a few 'regular' MD's that don't take insurance and ask their prices.

But this is kind of beside the point. The reality is that you still have an active infection - because you still have the symptoms of an active infection and the body has no ulterior motive - so you still need more treatment.

If you can get this from a doctor that is not educated by ILADS, then you can still heal, because it's the treatment, not the doctor that heals us. I have used herbs and do not use a MD (because there are none near me that understand these bacteria and the resulting infections) and I have healed once, but got reinfected about two years after healing the first time. So if you don't wish to use a LLMD, there are other alternatives, but they may not be the 'easy' route, as you have to learn about the bacteria and the infections and how to treat them effectively - but it can be done.
Posted 12/29/2016 6:22 PM (GMT 0)
Is there anyone on this site that is not gonna tell me about a Lyme litirate dr? It's a scam people?! There not recognized as real doctors! You are not gonna make me think they are real doctors because they have no evedince backing there claims that repeated antibiotics work for Lyme disease. I will agree that the medical community does not have a full understanding of this disease because some people are not cured right away with antibiotics but most are. Again are there any people going through this that eventually got better and how long did it take?
Posted 12/29/2016 6:27 PM (GMT 0)

mamla1520 said...
Is there anyone on this site that is not gonna tell me about a Lyme litirate dr? It's a scam people?! There not recognized as real doctors! You are not gonna make me think they are real doctors because they have no evedince backing there claims that repeated antibiotics work for Lyme disease. I will agree that the medical community does not have a full understanding of this disease because some people are not cured right away with antibiotics but most are. Again are there any people going through this that eventually got better and how long did it take?


We are here to support you no matter what course of treatment you choose, and we keep saying so.

It's up to you now to move on to that after making your opinion understood.


Again have you given any thought to a course of treatment (by other means)? Lets quit beating the dead horse and move on please.
Posted 12/29/2016 6:32 PM (GMT 0)

mamla1520 said...
Is there anyone on this site that is not gonna tell me about a Lyme litirate dr? It's a scam people?! There not recognized as real doctors! You are not gonna make me think they are real doctors because they have no evedince backing there claims that repeated antibiotics work for Lyme disease. I will agree that the medical community does not have a full understanding of this disease because some people are not cured right away with antibiotics but most are. Again are there any people going through this that eventually got better and how long did it take?

"...not recognized as real doctors!"

Don't know what you're talking about - they definitely are licensed MD's. So, that 's just not true.

There are many people on this forum that don't choose to treat with antibiotics...rather they do herbal..we can help you with that.

But, you do need more treatment. You still have symptoms.
Posted 12/29/2016 6:33 PM (GMT 0)
I don't know anyone who had lingering symptoms after a short length of antibiotics for lyme...and got better without further treatment.

(to answer your question)
Posted 12/29/2016 6:39 PM (GMT 0)

Girlie said...
I don't know anyone who had lingering symptoms after a short length of antibiotics for lyme...and got better without further treatment.

(to answer your question)

I wouldn't say it's impossible if they were just very recently exposed and treated immediately, but I would still wager there being remains of the borrelia or whatever possible co-infection came with it, in hiding and WILL come out eventually when and if conditions become more favorable for them. I mean it depends on that person's immune function.

Time always tells the truth.
Posted 12/29/2016 6:46 PM (GMT 0)
My course of treatment is going to be listening to my drs and waiting it out I will come back on here and tell people how long it took to recover without treatment. I'm going to prove that antibiotics cure this in the beginning and the after symptoms eventually go away on there own without more treatment. I do believe Lyme messes the body up for awhile after especially if symptoms are more severe in the beginning. My current and past symptoms are as follows so everyone knows. Muscle, joint aches, burning sensations, fatigue, tinnitus, muscle spasms, twitches, muscle weakness, eye floaters, dizziness, anxiety, and feeling generally unwell. These are after effects. In the beginning I had extremely high fever, worst headache ever, stiff sore neck, ached all over, sweats, bedridden for 4 days straight along with a positive blood test, I am going to get better and be an example to the people who come here and get told they need to see a Lyme dr.
Posted 12/29/2016 6:55 PM (GMT 0)

julymorning said...

Girlie said...
I don't know anyone who had lingering symptoms after a short length of antibiotics for lyme...and got better without further treatment.

(to answer your question)

I wouldn't say it's impossible if they were just very recently exposed and treated immediately, but I would still wager there being remains of the borrelia or whatever possible co-infection came with it, in hiding and WILL come out eventually when and if conditions become more favorable for them. I mean it depends on that person's immune function.

Time always tells the truth.

Yes, it does.
Posted 12/29/2016 6:57 PM (GMT 0)

mamla1520 said...
My course of treatment is going to be listening to my drs and waiting it out I will come back on here and tell people how long it took to recover without treatment. I'm going to prove that antibiotics cure this in the beginning and the after symptoms eventually go away on there own without more treatment. I do believe Lyme messes the body up for awhile after especially if symptoms are more severe in the beginning. My current and past symptoms are as follows so everyone knows. Muscle, joint aches, burning sensations, fatigue, tinnitus, muscle spasms, twitches, muscle weakness, eye floaters, dizziness, anxiety, and feeling generally unwell. These are after effects. In the beginning I had extremely high fever, worst headache ever, stiff sore neck, ached all over, sweats, bedridden for 4 days straight along with a positive blood test, I am going to get better and be an example to the people who come here and get told they need to see a Lyme dr.

What I have seen a lot of - is people stop treatment with symptoms...and many months to years later...are here to ask for help...because their symptoms did not resolve without treatment...and in many, if not most cases...continued to get worse.
Posted 12/29/2016 7:09 PM (GMT 0)
Mamia,

May I ask what part of the body you were bitten on?

Also, I just read through the posts, not sure if YOU have read them all.

Many people on here do not see a Lyme doctor. They treat naturally with herbs, homeopathic remedies, detoxing and supplements.

What is consistent, is that we are all in agreement that A. If you have symptoms you still have bacteria that needs to be treated. And B. We are willing to help you through whatever you decide.

I will leave you with two stories. A woman I know found her bulls-eye right away. Went to regular GP, was giving Doxcy for 6-8 weeks. Had residual symptoms and declared herself 'fine'. Fast forward several years and she has COPD (never smoked), severe joint pain and just had a hip replacement. I know a man with the same story. Fast forward and he cannot walk.

Not trying to scare you but I will say that untreated bacteria doesn't go away on it's own. It travels around and wreaks havoc on the body.

My entire family has lyme and we didn't know it. It's awful. I hope you choose healing.
Posted 12/29/2016 7:15 PM (GMT 0)
I was bitten on my thigh. Never found the tick but had a bullseye that took up my entire thigh.
Posted 12/29/2016 7:20 PM (GMT 0)
Mamla,

Sorry, you did say thigh. I'm foggy today.

Well that is very good news. The lower down on your body you get bit, the quicker it heals.

If this is your first bite, it was on thigh, and you treated right away, you probably will heal quickly. That said, I would still do more Doxcy. Three weeks is not enough but up to you. This is a new bite so you will be happy you did this now and didn't wait. I hate antibiotics and only take them if my health is in serious jeopardy.

Good luck to you.
Posted 12/29/2016 7:31 PM (GMT 0)
I did two rounds of doxy. One for 21 days. A week after symptoms started, then another around the end of November to middle of December for 20 days. My dr told me I could try it but did not feel I needed it.
Posted 12/29/2016 7:44 PM (GMT 0)
Well that's six weeks. That does work for some if you are super healthy and you caught it right away.

I really hope that was all you need. Keep us posted and if you have any questions we're here.

Good luck.
Posted 12/29/2016 7:56 PM (GMT 0)
Thank you and I will. And just to let people know I wasn't trying to be rude. I just don't believe that the body needs a bunch of antibiotics to cure this disease.I did see an infectious disease dr December 22 and she told me I could have possibly had Lyme meningitis when this first started but still feels the doxy did do the trick she told me she wasn't worried because I wasn't having constant headaches or fevers which I am not. she told me a lot of people she sees go through after effects of lymes and that she finds most people are better within a year. Unless they have had the disease for a long period of time and didn't know it.
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