Introduction/I have some different timeline questions

Hello all,

I've surf this forum over the last few weeks during my extensive lyme research phase of this whole "ordeal" (for a lack of a better word). But I've finally joined today. I will give an account of my story up until this point. I'll try to keep the story as short as possible (though it may not be short). But I do actually have some questions at the end.

What let me know something was wrong was when I had a very bad "flu" (obviously was not a flu) that felt different. There was no coughing, sneezing, or blowing of the nose. This planted the seed in the back of my mind that something wasn't right. When that "went away", I continued to have night sweats (something I also had during the "flu"). I thought that it was maybe some lingering issues. By the end of the weak, other symptoms emerged.

Head fog, pressure in the ears, stiff neck, random muscle twitches (but mainly in back and pelvic area), funny tingles in my right foot, light didn't hurt my eyes but light looked funny. At it's worst the world would look like a flashback scene in a movie, with the hazy weird looking intermittent lighting, anxiety, trembles, hot/cold flashes. I felt un-grounded, balance and equilibrium would feel off sometimes, etc. Of course all these symptoms would come and go and vary in intensity.

I went through the same run around most people that have/had lyme go through with trying to figure it out, doctor visits, multiple blood work and test done. Blood work first showed elevated levels, indicating my body was fighting a bacteria infection (gee you don't say uh?). So I went on antibiotics for 7 days. While on antibiotics, I couldn't just sit by and not do my own research. So I did my own research (hardcore), and ALLLL signs pointed at Lyme and/or their co-infections. Everything I experienced, all the symptoms, the timeline of events, I mean it just couldn't NOT be lyme. So I asked for a Lyme test (already knowing how unreliable they could be) and the Western Blot came back negative.

This result actually made me feel more irritated than relieved, because I already read the countless testimonies (many from forums like these) as well as different legit lyme association website, how the test results "almost" don't matter if you are feeling ALL the other plethora of symptoms and have different physical evidence.

I went home, irritated, but luckily had already done my research and a week earlier I had reached out to ILADS for a LLMD in my area. Found the referrals in my inbox, got in touch, and I have an appointment with my LLMD this Tuesday. There's two doctors at this office and one of them has lyme (really bad chronic lyme that I guess never really goes fully away).

Lastly, as I wrap this story up is, I'm noticing now, more and more, those brown "aging spots" appearing and I've also noticed a few of those pin point small red (blood) bumps. This kind of makes me believe I have a co-infection as well.

My timeline:

Christimas week 2015: bug bites on my lower leg (I didn't experience the classic rash)
The week after New Years: "flu" begins
end of Second week of January: all other symptoms emerge
Present day: seeing LLMD on Tuesday (2/23/2016)

My actual question:

I know there's no exact answer but I would like to get a possible gauge on lyme and chronic lyme. Can being bit about 2 months ago be considered chronic lyme at this point or is that more several sevaral months to multiple years? Just trying to get an idea of what to expect as far as length of treatment and intensity of treatment.

I know answers like these will be much more accurately answered by an experience LLMD, whom I see on Tuesday but I just thought it wouldn't hurt to reach out here and get other insights and experiences.

P.S. I'm so happy this forum/support group exists. I have a feeling I'm going to need you guys to get through this since you are or have gone through this. Talking to family is very therapeutic also, but there's something extra therapeutic talking to folks that REALLY know this and can relate.

Thanks everyone.

Hi Dacarte!
Welcome to our community! I'm so glad you found us and made it official to be a part of out community!!

I"m sure you've seen us requesting that people start with the "New to Lyme?", but just in case you haven't​, it would be helpful for you to start with reading through this thread that's posted 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

I'm very happy that you have already found a LLMD to see. They really will be helpful most times.

The Lyme bacteria can go chronic in as little as a few hours or days in some people who's health defenses are not working very well, but generally speaking, it takes a few weeks or months for most people. Some bodies can hold it off for a years though. We know that a large part of this is due to the health of the immune system, the stress load a person is under and what other conditions/infections they may already have.

Basically, if a person has body wide symptoms, then it's chronic though. But this doesn't mean that the person has Neuro Lyme - where the bacteria has actually invaded the nervous system.

There's really no way to know what your treatments will entail though, as it all depends on the things I listed above - the immune system health, what other conditions or infection you may be dealing with and the amount of stress in your life (as high stress lowers immune function). Even your doctor can't tell you for sure what your treatment will entail or how long it will last. It's supposed to be that we are treated for 2 months past symptom resolution, but it also depends on how quickly you find what your body will work with to heal you, how well your body detoxes and other things that I'm sure my brain just isn't thinking of right now.

Keep reading and keep asking questions!! The learning curve is incredibly steep for these infections, but we are here to help you through it!

Oops!! Sorry, I was busy answering your first post when you posted a second time!

Yes, some LLMD's will start treatment based on a clinical diagnosis. And they well should, as even the CDC says that Lyme is a clinical diagnosis, even though that's about all they get right with this disease:
"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods."

www.cdc.gov/lyme/

Although, Lyme has been proven to be capable of being passed form more than just ticks now.

I believe that a lot of what a LLMD will do depends a lot on what kinds of pressures they are under. If they are in a practice with "regular" doctors, they will likely be heavily influenced (or even told) to not follow ILADS treatment guidelines, to start treatments right away, to diagnose when tests aren't fully positive and a few other things.

Things you can do right away is to clean up your diet if needed and to start detoxing. You can go ahead and start an herbal protocol as well and either continue using it or discontinue it after your appt, depending on what you and your LLMD decide to do.

Well when you look up the definition of chronic it says persisting for a long time or constantly recurring.

I think one month is a long time!! So in my little world we are all probably chronic.

I decided to just not use that word. I simply have plain ole stupid dumb-dumb lyme.

Advice needed:

So I'm working with two lyme literal doctors, one is a LLMD and other is the LLND (they work together). The LLND has lyme.

I've seen them a couple times and ran all the lyme test and co-infections test (not Igenex). Everything so far showed up negative except for mycoplasma a very common co-infection to Lyme. The western blot had zero bands.

The LLND that I spoke with yesterday said to me, based on everything you told me she says its Lyme. She said she believe it's Lyme and has clinicalyl diagnosed me. She said also the fact that I herxed after taking herbs she provided also indicates this as well.

To see my time line and symptoms, please see the original post above. The only update to that is a few more symptoms, sore soles, experience a full body buzz feeling once when I herxed. Also an update is I'm not completely certain there were bug bites on my lower leg but they were bumps that made me think something had bitten me multiple times.

The dilemma is their normal policy is to NOT treat lyme with "only" a clinical diagnoses (however I don't know if this is an etched in stone policy). The LLND doesn't call the shots as far as treatment (prescribing meds), the LLMD does. So she would have to convince her.

I reached out to the LLND via email and communicated the idea of treating me based on clinical diagnoses (stating that even the CDC agrees with this).

Once again the LLND believes I have lyme but would have to convince the LLMD.

I'm just not sure what to do. The odds of having experienced 15+ symptoms related to lyme and the timeline of events, herxes that indicated lyme and co, and mycoplasma being a very common co-infection of lyme but it NOT be lyme just seems way, way too small.

Any advice is much appreciated. Thank you.

Edit: updated symptoms since I wrote the first post

1. insomnia (not new but forgot to put it the first time)
2. sore soles (not just a weird tingle feeling)
3. herxes since taking herbs (muscle twitches everywhere, the internal buzz feeling like being zapped by electricity for two seconds).

Post Edited (dacarte3) : 3/2/2016 5:14:30 AM (GMT-7)

I may have to take the route you did. The are treating me with doxy right now. I'm on day one, wish me luck. I'm going to continue to take herbs and maybe even up my herbs probably going forward.

I'm a novice in herbs but I know you guys on this board are very knowledgeable (thank god you all here, seriously).

To give my LLND proper credit, I believe she is doing what she can to bend the llmds rules a bit. It wouldn't be the first time, I just need a great case to help her.

I see the llmd in two weeks, when the doxy runs out and I'm going to share the story of my sister going through the same symptoms at the exact same time because we caught it together over Christmas week. She has experienced so many of the same symptoms including a degree of bells palsy. I havent quite gotten that but have experienced a very tight feeling in the face to the point I have to check it in the mirror to make sure everything is okay.

I hope that appointment goes well.

Post Edited (dacarte3) : 3/2/2016 8:36:37 AM (GMT-7)

dacarte,

I'm really sorry I missed your earlier post. I wasn't on the forum for a couple days due to illness.

How did day one on the doxy go?

I was really impressed (and happy ;) to read your post on another thread about the benefits of detoxing - your attitude about it and commitment to it will bode you well.

You are doing the things I wish I did. I listened to my LLMD about not taking herbs while on abx and I truly regret it now that I've acquired some knowledge about herbs.

Still, we each find our path.....and each of us has a different one.

Trust your body, keep notes (and keep detoxing ;) and you'll be fine.

I wish you the best of luck and look forward to your update!

She called me tonight crying because she was experiencing a really bad herx. She was really scared because she doesn't know what a herx is. I had to calm her down and let her know what's going on and that it will pass. She said she felt like she's dying and is going to have a heart attack. I let her know she will not.

Lyme is evil, because it already gives you anxiety and then you get more of it when you freak out over a herx (if you don't understand what it is).


She knows nothing about lyme. I try to reach out to her and educate her as I'm learning more about it every day. However, she hasn't been taking it seriously. She's procrastinating on the things that she needs to do to deal with it, heal and get better.

But up until this point, she has only felt "symptoms" but not a full herx. The phone call was basically a "okay, I need to get serious about this, what do I do" conversation. I gave her the crash course on the who, what, when and why of herxes. What she can do immediately to start feeling better (diet, immune boosters, detox).

She found a LLMD in CT (she lives in RI, a hotbed for lyme) but has procrastinated. I told her tomorrow we are having a serious "sit down" via phone to get a game plan of healing together.

Edit: she's going to the hospital tonight. I, of course, am never going to tell someone to NOT go to the hospital if they believe they should. But in the back of my mind I'm thinking "stop wasting time with "regular" doctors, they are not going to be help you with lyme."

Hi Traveler,


Just reading your comments about neuro lyme.I remember getting bit around 2010 and got diagnosed and on Abx from 10/14.And all my main symptons atleast the one hanging around at the moment are nerve related and arthiritic but more nerve related i feel.When you said it does not mean you have neuro lyme is neuro lyme the hardest to heal??


And just out of curosity My LLMD wants to keep me on antbiotics for around 2 years in total for now plus i do some herbs without telling him atleast for now.When do you think is the right time for me to switch from antibiotics to herbs??

Surm1234 said...
Hi Traveler,


Just reading your comments about neuro lyme.I remember getting bit around 2010 and got diagnosed and on Abx from 10/14.And all my main symptons atleast the one hanging around at the moment are nerve related and arthiritic but more nerve related i feel.When you said it does not mean you have neuro lyme is neuro lyme the hardest to heal??


And just out of curosity My LLMD wants to keep me on antbiotics for around 2 years in total for now plus i do some herbs without telling him atleast for now.When do you think is the right time for me to switch from antibiotics to herbs??

Surm, IF I remember correctly - and that's a mighty big IF right now- I don't believe I said you don't have Neuro Lyme, I believe I only said that you don't need IV's and PICC's in order to treat Neuro Lyme symptoms. I was really severely impacted - I lost the ability to walk, seizures, no working memory, and so much more.

But, if you could direct me to where I said that, I can be much better at clarifying what I meant. I talk a lot - LOL!!! That's how I have so many posts!

And yes, for many Neuro Lyme is harder to heal, but far from impossible.

As far as your treatment times, no one can tell you how long you will be in treatment, no one. Saying that it will be 2 years just to give you an idea is different though.

If you choose to switch over to an effective herbal protocol that will cover the same infections as the abx, I would suggest you do it when you are comfortable doing it. Anytime you choose will be fine. There are a few people that really do heal better when they combine herbs and abx - and if you are one of them, know that there is NEVER any shame in going back to abx if you choose to do that also. You must find what works best for your body.