Recently told I still have Lyme and I'm scared!

Hello, all! I'm really happy to have found this community and I'm hoping I'll be able to get some helpful information here.

I was diagnosed with Lyme in October of this year after having the rash in August. I believe I may have been bitten while on vacation in Florida. My doctor didn't know much about Lyme and basically did some research over a day and then put me on Doxy 100mg 2x daily for a month. I was re-tested about 2/3 of the way through the course of antibiotics and told I no longer had lyme disease. She told me to be re-tested again in 4-6 weeks (I was in the middle of a move to Florida at the time).

Last Tuesday I was re-tested and today I got a phone call from my new doctor saying that I do still have Lyme disease and they referred me to a specialist. This concerns me because, during my first visit with this doctor, he told me that he was familiar with the disease and had treated it several times before. The fact that he referred me makes me think it's worse than he thought, although I don't know if that can be revealed in the testing he did (he had two different labs drawn).

The specialist wasn't in my network so I found a different infectious disease specialist who, as it turned out, didn't treat Lyme. He referred me to yet another specialist who was in-network, but said it's possible they could be backed up for quite awhile. So at this point I have no idea when I'm going to get treatment. I also wasn't able to speak to my doctor at all. The receptionist said I'd have to make another appointment to talk to him, which seems pointless if he's already referred me to someone else. So right now I have no answers.

As far as symptoms, I've seen a very noticeable decline in concentration in the last month or so. I started an at-home transcription job since we've just moved to a new town and I haven't started the actual job hunt yet. I went from being able to complete about $50 of transcription per day, five weeks ago, to about $30 of transcription per day now, if I'm lucky. Usually it's more like $20. I have some days when I feel basically normal, mentally, and then other days I hear the words through the speakers, but my fingers just can't figure out how to type them.

It's really upsetting! I value my intellect above all other qualities. I love learning and I love reading and writing and I'm afraid I won't be able to do those things anymore. I also feel generally drained most days. I haven't had any joint pain or muscle pain beyond what's already normal.

Now for the questions I'm hoping someone can answer:

Are these cognitive symptoms as bad as I think they are? Will I be able to recover from this?? And what does it say about me that the month of antibiotics didn't do anything? Is it probable that I have chronic Lyme as opposed to the acute Lyme we thought I had? IS this curable?

What can I be doing between now and whenever I happen to actually be seen by a doctor? I've read a little about the Cowden Protocol for Lyme. Is that something that I should perhaps try? I know my sleep schedule has been terrible. I usually go to bed around 2am and get up around 10am. I've read that I should be sleeping closer to 10 hours a night and drinking 12 glasses of water a day.

Please help!! I would love any advice you have to give! I am feeling both devastated and somewhat numb. Today I spent an hour laying on the bed in a towel, curled up with my dogs, and staring off into space, because what else am I even supposed to do??

Thank you so much in advance!

Hi Ravenclaw. I think you need to see a LLMD not a Infectious Disease doctor. The sooner you make an appointment the better.

There's a lot you can start doing right away. Detox, cleaning up your diet, etc. I know some have had success with Cowden. I can't really speak to it.

I truly believe you will get better, especially since you think it was from the bite in August. Many people on here have gone years and years and still healed. There are some wonderful and VERY smart people on here that will give you more info.

Hi Ravenclaw!

As Girlie has said, take a deep breath. We are here to help you learn what you need and to help answer your questions as best as we can. None of us are doctors, but experience can speak volumes sometimes!

Yes, you will be able to recover from this! I was infected for 40 years that we know of, and I've healed! There have been many that have come through here and have healed and moved on. Only a few stick around to help out afterwards - and we appreciate them soo much!

Your month of abx is very typical when you see a doc that doesn't know enough about these infections. You were given not only too low of a dose (it has to be at least 400 mgs a day) but for too short of a time (needs to be 6- 8 weeks when there are no symptoms other than a rash, more symptoms, more time on abx). We typically see those that have relapsed due to not getting sufficient treatment such as you have.

You do not want to use an ID doc, unless they have been specifically trained by ILADS ​(International Lyme and Associated Diseases Society). There is a vast difference in what IDSA and ILADS believe is the best treatment for these infections. You have experienced what IDSA treatment is like already. ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme.

ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/


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.
​


For information on finding a​n ILADS trained​ Lyme Literate Medical Doctor(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 and you can go to ​tbdalliance.org​​ to learn more about these infections.


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/


​ This is something that I wrote up a while back, because I was being asked what my opinion was on what it took to heal these infections so often:

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I used a foot soak daily, dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural), oil pulling, taking activated charcoal and keeping the amount of stress in my life at a bare minimum. You can find some really good detoxing suggestions in the "New to Lyme?" thread that sits at the top of the forum:
www.healingwell.com/community/default.aspx?f=30&m=1606610

And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html


b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures​ or set backs​, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria! ​Although it takes only hours or days for most bacteria to replicate, Lyme bacteria only replicates in the body every few weeks.​

You are fortunate to have caught it early...handle it soon before it does permanent damage...you can do herbs until doc can see you ,best wishes modalities and protocols i have looked at are buhner protocal, travs chronic tonic, marshel protocal,oxdative iv therapy h202 ,high dose ,c ozone ubv, bee venom therapy (hurts n itches so good) rife machine and some have done mms hbot .it is a pleomorphic organism..3 forms ...one person said abx os like trying to kill a snake with bug spray. Bx sounds bogus and there are a lot of snake oil salesman.banderol brought it out for me but i have seen it come out of cells red and white. One dentist said spirochette action stopped with honey but how do we get it in bones,cartilage eyes brain...they like soft tissue with low blood flow so begins our journey you are not alone. Teasel has helped joint pain magnisum and b vits have been good for cognitive. .this place collectively know more than any 100 docs and 10llmds.

I think everyone else covered pretty much all the advice I could give as far as how to go about treatment, but I wanted to add just one thing:

This is going to be a journey. You are in it for the long haul, but we are all here for you. I've had periods of time within this year I've had Lyme where I feel like I cannot go on. I wondered, I was angry, confused and scared- I even left the forum for awhile because I wanted to believe that this would all just go away.

Give yourself the time you need to gather yourself. It's okay to feel angry and hurt, but your quality of life will be so much better if you try to think positively most of the time. Easier said than done, but we have all gone through it, and we will be with you and understand you better than probably anyone you know in real life! :)

With all that being said, please take care of yourself and don't be afraid to ask questions or just rant. No one is ever a bother, and everyone deserves a safe community where they can share their feelings without being shamed!

Ravenclaw, it is not going to be free. My first LLMD was $350 and that did not include the $200 for tests that my insurance did not cover. I have excellent insurance, it pays 90% of everything. I always thought I was set for life. I got lyme and holy smokes, no one takes insurance??? I finally found one and he is so limited on his knowledge.

After a Internal Medicine doctor, a Neurologist, an LLMD and another LLMD I set out on my own. My money is now spent on herbs.

This is not for everyone and not everyone heals from the same stuff. We are all so different and there is no magic bullet that cures us. We have to search and try and try again. For me, I decided if it was a guessing game, I would guess on my own. I have maintained the relationship with my doctors, but I just knew I had it in me to give it a go. Plus, there is this wonderful person here, CD, that said "you can do it." She said that and it was like it gave me power and strength. I researched and have been doing it and I am feeling better and better. I still have bad days, but looking back in my journal, I have come a long way baby.

Whatever you decide to do for you, we will be there for you. Someone on this board has probably been down that road and can help you.

It is baby steps and I certainly was frustrated from the beginning. I am a type A "let's do it and get it done" person. My first lesson was patience. And, it is still my lesson.

~Annette

Thanks for the replies! Unfortunately, spending hundreds on a LLMD probably isn't in the cards for me. For now I'm going to try my luck with the infectious disease doctor and go from there. I hear you saying refinance your house or do whatever you need to do, but we just don't have that kind of money at our disposal. There should be a significant pay raise in my husband's near future, so at that point I'm sure we'll have more options.

I've also looked into ways to do the Cowden protocol without spending $300 per month. I'm looking into cats claw instead of samento and which of the herbs are the most important, which can be made at home (parsley detox), etc. I know this is my health and that it's the most important, but that doesn't make money appear, unfortunately. I'll definitely use whatever antibiotics are prescribed, although I've been pretty against them for years.

I've already noticed that by letting myself sleep longer without feeling bad about it, my cognitive function has improved. Before I was getting 7-8 hours per night and now I'm sleeping more like 9-10 hours.

Ravenclaw - If you start out treating lyme with Buhner's herbs - it won't be expensive at first. We start a very low dose...and slowly titrate up...
In fact, you may never get to the 'top' dose...

I have found Buhner's to be quite reasonable...now I am on the bartonella herbs...and I'm only on 7 drops of my herbs...so the bottles have lasted quite a while.

Maybe that would be something you could handle financially...until your husband gets his raise.

We can help you get started on Buhner's protocols.

I am glad you are sleeping longer - your body needs it - it's fighting one he-- of an infection.