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newly diagnosed with Lymes - what to do

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Posted 4/15/2017 7:28 AM (GMT 0)
Hi, I was diagnosed with Lymes disease 2 weeks ago, from my reckoning I have had it for at least two and a half years (multiple visits to doctor - COPD, weird rash, fatigue, all of which were ignored and put down to my age and depression). The hospital has put me on a 3 week course of antibiotics but what I really want to know is what happens next? Will my symptoms go? Will I be able to breathe again? Will the rash go?
Any help/suggestions would be appreciated!
Thanks
Posted 4/15/2017 8:10 AM (GMT 0)
Hi GIHoog - welcome to our community!

I'm sorry you have lyme disease...but am glad you found us here. This is a great group of people - lots of knowledge and support.

What happens next? Well, unfortunately 3 weeks of antibiotics will not be adequate for chronic lyme.
This is why you should see a LLMD (Lyme Literate Dr.)
A LLMD knows how to treat Lyme disease...and also the co-infections that come with it.

The aim is to become symptom free with treatment...but treatment will for many months..and can even take a few years.

The good news is you have a diagnosis...and that is the first step.

We can help you find a LLMD. just start a new thread titled: "Looking for LLMD in/near_______" and fill in the blank.
Then enable your email option through "My Profile" - so members can send you recommendations. We don't post the names on here - this is to protect our LLMD's...as they don't treat according to the IDSA guidelines (which are inadequate) so there is the threat of being investigated/persecuted.
LLMD's understand that Lyme disease is a multi-systemic disease and is not a quick fix.

You can also contact ILADS for LLMD names:


ilads.org/ilads_media/physician-referral/


You can also send me an email and state in the email where you are searching for a LLMD.
Click on the envelope below my screen name to send me a message.

We encourage all new members to read through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.
Posted 4/15/2017 11:21 AM (GMT 0)
Welcome!

We are so glad you've found us. We are a caring and knowledgeable group and we have experienced much of what you are experiencing and have yet to experience.

Ask alot of questions! 😊
Posted 4/15/2017 11:47 AM (GMT 0)
GIhoog,

Welcome. Sorry you have Lyme but glad you found your way here. This board is the best way to get immediately guidance and support.

Most of us have been to numerous doctors and misdiagnosed before learning about Lyme, you are not alone.

I originally went to an internist and then and infectious disease doctor, also given three weeks of Doxcy. Only after finding this forum was I schooled in Lyme. I did find an LLMD and was put on abx for a longer time.

If I started all over again I would immediately start detoxing and building up my immune system, also if you haven't already change your diet. Most of us are no gluten, dairy, sugar, caffeine, alcohol, processed foods.
Posted 4/15/2017 1:34 PM (GMT 0)
Hi GIHoog

I'm very sorry you're sick but glad you've finally found out what may be the root of the problems.

I've had the symptoms you noted (and more I didn't realize were connected).

I can breathe again, haven't needed those meds again and didn't get the usual winter bronchitis! Molds I was positive for seem to have been the culprit here. Oh the CPN had to be a big factor here too.

The weird rashes are gone too. Candida played in here.

I found a LLMD who I learned from that we usually have more than one thing going on as our immune system wasn't able to fight off other infections.

Hang in there , find a LLMD and know you will find an amazing amount of kind, caring and very knowledgeable support from this group.

VCL
Posted 4/15/2017 1:39 PM (GMT 0)
VCL,

Hi. I hope you are well. Glad so many of your symptoms are going away.

May I ask how you got rid of mold and how you treated yourself for it?

We tested negative for mold, and the lyme testing on our apt (with Ghostbuster level equipment) said not high/normal. But I am still suspect since we had a leak from apartment above. It has been repaired but I don't trust it completely.

Thanks.
Posted 4/15/2017 1:51 PM (GMT 0)
Hi Huddie

I'm treating with compounded nasal mists of Amp B and EDTA.

I have gotten some mold plates but not tested my house yet. We had all our rotten AC unit ducting and registers removed and replaced last summer and a new AC unit not long before that.

We also had a bathroom that we suspected had a leak remodeled but only found a very small spot that had wood damage.

I honestly believe the ducting was the biggest culprit and a moldy office I was working in (not anymore though).

I've since read that the mold plates may not be very reliable but I'm going to use them since I have them.

Do you suspect that y'all are suffering from molds?
Posted 4/15/2017 1:52 PM (GMT 0)
Hi GIHoog!
Welcome to our community! I'm so glad you found us.

You've already been given some great information, so I mainly stopped by to say Welcome!! Please ask questions!!

The learning curve for these infections is quite steep - and unfortunately, you've just stepped into a controversy by having these infections. There are two 'camps' on treatments - IDSA and ILADS. Treatment for only 3 weeks is IDSA treatment standards, and even though the IDSA treatment standards have been replaced by ILADS treatment standards by the National Guidelines Clearinghouse, it hasn't stopped a lot of uneducated doctors from continuing to push them.

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


​​http://archinte.jamanetwork.com/article.aspx?articleid=226373​​


​​http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/​​
Posted 4/15/2017 4:00 PM (GMT 0)
GIHoog, well since you have had Lyme Disease for about a couple of years, the 3 weeks of antibiotics probably won't heal you. It will take some time.

Your symptoms will go away with treatment and you will be able to breath again. It will take some time. Just be positive and calm in your thinking.

As for the rash - well my Lyme Literate Medical Doctor had a rash and his went all over his abdomen and it would come and go. I had it on my forearm and it went away in 3 weeks without any treatment and never came back.

So the rash is tricky. I think each individual is different and it will react differently. Actually, the symptoms for each one is different also. As well as the treatment time is different.

We have twins on this board and they both have different symptoms. It just shows that everyone is different so predicting isn't possible.

I highly suggest a lyme literate medical doctor. You have been given information on how to find one. Everyone here is so helpful, just reach out to us.

Lyme is a lot to take in so be patient with yourself. There is a lot to learn, but you don't have to learn it in ONE day!!! Lyme loves a weak immune systems and one of the best ways to weaken your immune system is worry or stress. So don't go there.

So very sorry you have lyme, but it has to feel good to finally know what you are dealing with.
Posted 4/19/2017 2:14 AM (GMT 0)
Hi everyone!

As someone who was recently diagnosed, and overwhelmed, I thought this would be a great thread to post on. Thank you to the veteran members who shared their advice and experience, that definitely helped me! I was able to find a LLMD, (thank you so much Girlie!), fairly close by and I'm feeling much more hopeful about treatment.

GIHoog

I have had symptoms of Lyme for almost 5 years now. They began after a severe car accident and a whole bunch of steroids! I found out just a few months ago that I have Lyme. I originally saw an infectious disease doctor, who agreed to treat with 2 months IV Rocephin via picc. The neuropathy in my leg began to respond after about three weeks. I started to gain strength back, but since I stopped that treatment on March 20th and began oral Ceftin, I rapidly started losing it again. So, my concern that treatment with an ID wasn't going to be adequate, became pretty evident. My LLMD is treating Lyme and a Bartonella co-infection, which I hadn't been tested for. I'm just getting started on a new antibiotic combo, Biaxin and Minocycline.

I have a lot of cardiac issues, which didn't seem to respond well to the Rocephin. Your experience may be completely different, and hopefully better! I have had to learn very quickly, that the separation between an md and a lyme literate doctor is a huge one. I fully intend to dig in my heels and fight this thing to get as much of my health back as possible. Finding a good doctor who understands what we're fighting against, seems like my best chance. Also, there is a ton of information here, much easier to find than searching on my own. Hang in there and know that you're among good company that will be happy to help!
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