Any Lymies in Rhode Island? Please help.

Hi everyone,


I live in RI and was recently diagnosed with chronic late stage neuro Lyme. I've been trying to find resources and help here but it's been very difficult.

I'm currently seeing one of only two LLMDs in the state. I've been on doxy and omnicef for two weeks now. I think I've had a couple herxing events but very hard to tell from my normal symptoms. I believe I have had Lyme for at least 12 years. Possibly more. My health has not been great since I was a kid and in my late 30s now. I was diagnosed in 2005 (clinically) did a month or two of antibiotics from pcp, was declared cured after I felt better and gradually over years started developing seemingly unrelated pain symptoms until I was completely debilitated after a shoulder surgery in 2011 with a parade of other symptoms. The neuro, gastro and cardio symptoms didn't really start until about 2 years ago. I occasionally had brain fog but was told it was my anti anxiety med. Went through a ton of docs who kept diagnosing me with nerve pain, fibro, cfs, occipital neuralgia, trigeminal neuralgia, TMJ, etc. It didn't occur to me until a few months ago that this could be Lyme again because the symptoms the first time were so different and I trusted my doc way too much.

Anyway, I'm very alone with this and have many questions and need help. Locally if I can find it. I'm having a hard time finding support groups or anyone else to talk to in this state. I'm honestly so terrified. My family doesn't understand. I'm single, no kids, can't work or go out much except for appts and necessities. Right now I'm staying with a family member in a very old house. I KNOW I have been exposed to mold from an AC unit that I immediately got rid of but I think there's prob still mold around. Every cent of my savings is long gone on trying to find out what has been wrong with me the last couple of years. She won't get the house tested and I cannot afford to move at all. I can barely string two sentences together on my own there days so that would be hard to organize. No support at all from anyone..I may just be dealing with Lyme or Lyme and mold. Don't know and frustrating because all I want is to get better like everyone else. I'm very quickly giving up hope.

Where is everyone in this state? Am I seeing the right doc? Starting the right meds? I'm losing myself so fast physically and mentally. Can't eat or sleep or think.

The only support group I heard of is like 45 mins away and I can't drive anymore. I can't even find any info on when or where they even meet.

So , please, if anyone in RI happens to see this and has walked this path before, please, please respond. I really need some help here and I know there has to be someone or something around here. Please.

Thanks for taking the time to read. I just joined this site yesterday and this is my first post so IDK if I have IM or email listed but if so please feel free to reach out that way as well.

Thank you and best wishes to everyone here.

So you were symptom free for several years? If you did it once, you can do it again.

It sucks that the main stream medical community doesn't understand lyme well enough to educate people that even after you get better, you live with lyme forever. Meaning a lyme crash can happen again in life later down the road. If you would have known that you could have treated much earlier when symptoms started to creep up again, it would have beneficial.

But, that's all hindsight.

You said you are seeking help and resources. Then you found the best lyme forum that exist.

We can either help you directly or we can do our best to provide information to you so you can obtain that help.

Please ask us any questions you may have.

Hi HopenHeal - welcome!

I edited your post to remove your email address.

It's against forum rules to post our contact info.
Instead, you can enable your email option through "My Profile"
Members can contact you by clicking on the envelope below your screen name.

Hi Girlie,

Thank you so much for the warm welcome! Also for the info. I just enabled my email and I did find that group on Facebook you mentioned. It's getting a little late here but first thing tomorrow I'm going to see if I can maybe get in touch with the moderator and see if I can get any help. I spoke to someone today who is knows a couple of Lyme patients and unfortunately, there doesn't seem to be much on the way of support groups and such. And this is an endemic state. But he could be wrong.

Thanks so much everyone. This has been a very lonely, scary and confusing time and it means A LOT to receive your replies.

Hopenheal, I am especially glad to hear from you! Thank you so much for your offer to email. I will definitely be doing so a little later today. I'm trying to get myself ready for a docs appt this morning (unlyme related) but I'll be able to come back here later and also shoot you an email. I think I enabled mine on here as well. It would be very helpful to talk to you! Thanks again and I'll be emailing today.

Dcarte, thanks to you too. I need so much encouragement now. To answer your question though, I don't know if I've ever really been symptom free. Infact, looking back it's possible I've had this before 2005. I have had other seemingly unrelated medical issues most of my life. 6 years ago I was diagnosed with neurogenic thoracic outlet syndrome which is a pretty rare condition. I had suffered neck and shoulder pain and one sided migraines since my teens that got worse by the year until I was literally incapacitated in my early 30's. Couldn't get a diagnosis for that either so I had to go out of state for one. There, a thoracic surgeon told me my first rib was compressing my nerve bundles and subclavian arteries causing reduced blood flow and the pain up and down the left side of my head down to my arm. Got so bad I couldn't turn my head at all to the left. Had the surgery 6 years ago and did not heal well even though I did all the right things, had the best surgeon, etc. After that though is when the wide spread joint pain and swelling began. Again, totally debilitated. Still suffered constant headaches, migraines and neck and shoulder pain.

Been diagnosed with all kinds of things ever since. It wasn't until maybe 2 years ago that I started noticing episodes of brain fog but thought it was my anti anxiety med. Then it became more and more and then noticing memory issues more and more. I blamed that on all the other meds I was taking. There always seemed to be an explanation and I'm leaving out a lot of other things that I have tried in the past year med and treatment wise for other things because I just kept getting told I had fibro, trigeminal neuralgia, tmj, post surgery nerve damage, etc etc.

Did a round of prednisone earlier this year ( I know) but all throughout this entire time, Lyme was never on my radar. When I had it the first time, I really didn't know what it was. Was clinically diagnosed by my pcp, had no found bite or rash. But back then the symptoms were different and seemed to explode one day out of no where. Meningitis and mono like symptoms combined. She put me on antibiotics for I think a month. After a couple months I did feel better and more myself but looking back now, it's been one problem after another ever since. Besides the TOS. Which one's told could have been set off by a car accident but when my neck and shoulder pain began in my teens, there hasn't been a car accident yet!

So for me, it's a huge bundle of confusion. Have I had it since I was a kid? Did I get it in 2005 and the other stuff is a coincidence? Did I get reinfected in the last few years somewhere which is very possible too.

Besides, the brain fog and memory issues which became more severe and constant. I really knew SOMETHING was wrong when my ears wouldn't stop ringing, vision was getting blurry, couldn't sleep more then 3 hours a night and still can't, couldn't put thoughts together, heart palps, severe stomach issues, eyelashes falling out, Etc. I remember the prednisone made me so sick and all my pain and other synptoms so much worse I laid in bed like a zombie unable to move for over a month. Then I thought maybe it was adrenal fatigue, or thyroid or hormones. Anything and everything except LYME. I can't tell you how angry and disappointed I am at myself for not even thinking about it. But I was still so young the first time, knew nothing and trusted my doc when she told me it was gone. I never really thought about it again until a few months ago when I was trying to figure out what was wrong with me and looking at the symptom lists and could not believe how many I have and have had.

So, basically very confusing but in my case I don't know of I have ever been symptom free. I just never knew before that it could cause so much symptoms cognitively like this. I feel like I don't know who I am anymore and that I lost myself. I was blaming it on the years of chronic pain and medications which I've been off now for months. Another reason why I thought maybe some of this was from withdrawals. But all these symptoms didn't make sense with that either. There was always some explanation in my mind. I've learned not to self diagnose anymore from this but on the other hand, no docs were helping me with that either.

So finally diagnosed with chronic Lyme a couple weeks ago, clinically. Blood tests still come back negative. I'm waiting for my igenx results which my new LLMD didn't even approve of really but I did it anyway. I should be getting the results any day but could only afford the basic Lyme panel.

Another reason why I would love to speak with you Hope, I need to know that I'm seeing the right specialist here. I'm not very trusting so far and feel like I can't afford to waste anymore time. As you know, there aren't many choices here unless you go out of state. Which I'm now looking at that possibility but finances and transportation would make that difficult at this point.

I just want my life back. I'm so scared. I'm scared too that my gut, which has always given me problems will get worse by the abx. I have no appetite the last few months and losing weight pretty rapidly. I'm sure some of it is the anxiety and depression over all this in dealing with as well but major digestion was issues.

Anyway, I'm sorry I made this into a book. I just wanted to explain more. I don't think ilk ever know or be able to untangle all these medical mysteries that have been happening to me esp for the last 12 plus years.

I just hope that now at least i have the right diagnosis and at least on some kind of treatment. I have my doubts that's even the right one or if it will be enough at this point. I'm so lost and alone with all of this.

I'm glad I found this forum. I'll be back again later. Thanks to anyone who read this and any insight or advice . You guys have already been so kind.

Thank you all again.

Welcome Mergirl,

You have found a good place here! I am a newer member too.

I am awestruck how nonchalant regular doctors, CDC, IDSA are about dealing with these awful tick borne infections.

I am also amazed at how they are able to perpetuate false information.

Trust your instincts. Read everything you can on Healingwell.

I am interested to see what your Igenex results are. Be ready to wait. Mine took 3.5 weeks rghrghrgh.


Good luck and welcome!

Hi Patty,

Thank you so much for your reply. I needed that right about now. Feeling very scared and alone at the moment. I have mostly neuro and cns symptoms and I feel like things are so bad right now. I don't have much support at all with friends or family. I lost most a long time ago so feeling very much alone and uncertain of my treatment at the moment. I hope improvement or remission is in my future too. Trying to read as much as I can but sometimes it makes me a little more confused.

Anyway, thanks again Patty for taking the time and welcoming me warmly. Truly appreciate it

Sorry for the typos. Typing on my phone. Ugg. Also, brain fog and cognitive problems certainly don't help do they?

Yes false negatives (negative interpretation) seems to be the rule, not the exception.

Oh another thing to scare me that I'm wondering if anyone else has experienced.

Occasionally, when I blow my nose there's sometimes some blood coming from usually just one nostril. ( sorry to be gross) This has happened before but it's been a while and the first time since I've been on antibiotics.

Is this a Lyme or Co infection symptom?

Hi! Sorry your going through all this! Glad you found this forum, I honestly don't know how I'd get by without it...

As far as looking sick- yep, I've looked awful for quite some time now. Totally unrecognizable really. A little over a year ago I switched from raccoon eyes to bells palsey, so I looked terrible eaither way, but just different terrible, haha .

Also skin issues ,facial redness, bloodshot eyes , sunken cheeks, butterfly rash, and generally sick looking.

A few months into serious treatment & I've begun to have glimpses of a person who slightly resembles me again though. Sometimes.

ive had the blood in snot thing too. Weird, mine was usually one nostril only also, but occasionally both. That also has ( mostly) gone away with treatment.

It worried me a little too, as it's kind of a weird symptom... but at least for me , I believe it was related to the Lyme & co.

Mergirl said...
Oh another thing to scare me that I'm wondering if anyone else has experienced.

Occasionally, when I blow my nose there's sometimes some blood coming from usually just one nostril. ( sorry to be gross) This has happened before but it's been a while and the first time since I've been on antibiotics.

Is this a Lyme or Co infection symptom?

Mergirl,

Nosebleeds are a MOLD symptom. I've been reading your posts trying to put together your situation. Either here or in another post, you mentioned living in an old house and mold.

FIRST things first. You need to be living in safe, non-moldy environment. For most people, this is the hardest step. It's also the most necessary. You will get nothing but sicker without dealing with this. Do you have options for moving to another location right now?