Welcome to the Lyme forum!

[patsy10]

If you have been diagnosed with Lyme disease, think you may have it or are suffering from strange, undiagnosed symptoms you are at the right place.  Lyme disease is a controversial and difficult to diagnose disease that can cause many unusual symptoms.  You will find many supportive and caring members here with a lot of great information to share.  Keep in mind we are not physicians and decisions regarding your medical care should be made by  your physician.  

There are many ways to use MedHelp.  Here are some examples of what you can do here.  

You can create a profile with information about yourself.
You can create a journal.
You can add friends.
You can send private messages that only you and the person you send it to can see.  
You can send a note which can be seen by others.
You can click on "My Medhelp" and use trackers.  
You can look up information in the health pages at the right of the screen when you are on the forum.  
You can post questions on other forums or the "Expert" forums.  

I hope you find our community helpful.

Sincerely,

Patsy10

[maryjane28]

Hello, recently my mother admitted herself to the ER due to have a rash over body, pain in the legs, knees, wrist, hands shoulder pretty much all over her body.  The doctor tested her for meningitis as well as did a spinal tap of which all blood work came back negative.  The pain is so bad my mother can barely walk and anytime she moves her joints aches with excruciating pain.  The ER doctor gave her meds for the pain and rash of which the rash is slowing going away but the pain in her joints is still there.  She doesn’t have any precondition autoimmune diseases that we are aware of but she does suffer from hypertension and neuropathy in her feet.  We have no idea what is going on with her??? She doesn’t have the flu although she did have a bladder infection...When she went back to her primary doctor she was referred to a rheumatologist for further testing...If anyone have any idea of what this can possible be please assist, we are clueless???

[JackieCalifornia]

I'm sorry to hear about your mother's illness.

This may sound silly, but have you taken photos of the rash?  Sometimes that helps a later doctor figure out what happened, esp. if the rash is gone.  A cell phone photo would probably be fine.

You don't say what part of the country your mother lives in, and while Lyme is everywhere, there are some areas where it's more common...and where it's easier to find MDs familiar with Lyme.

Definitely get copies of ALL test results from all MDs and medical facilities and keep your own file copy, don't just hand it over to a new MD.  You will need this going forward.  

Rheumatologists are good doctors, very highly trained, but they have a very hard time considering whether someone has Lyme and/or co-infections (which are other diseases carried by the same ticks that carry Lyme).  Rheumies are trained to focus on the joints, and they do a really good job of that, but often forget to look beyond the joints.  So see the rheumy, by all means, but something I have learned from Lyme is not to see one MD and find out nothing, and then have to start all over with finding a new MD, getting an appointment, going to the appointment, getting the tests run, waiting for the results, waiting for the follow up appointment, etc.  It can easily take months to do that, and if you have to do it with more than one MD (which is not uncommon in Lyme), well ... it can be a very, very long time.

My method is to press ahead on all fronts:  make the rheumy appointment; and also if you think Lyme is possible, don't wait to make an appointment with an LLMD -- do it quickly so you are running on multiple tracks.  An LLMD is slang for a 'Lyme-Literate Medical Doctor' -- meaning a regular MD [GP, internist, whatever] who takes a broad and progressive view of Lyme and its co-infections.  

You can find one by googling 'how to find an LLMD' and adding you city or state or area, or check some of the following websites (in no particular order) for referrals:  

chroniclymedisease [dot] com [forward slash] llmd-referrals
lymediseaseassociation [dot] org
lymenet [dot] org
ilads [dot] org

Let us know how it goes, and best wishes for a quick recovery for your mother.  She is lucky to have you with her.

[patsy10]

Did they check her for Rocky mountain spotted fever?

[maryjane28]

Thanks for the information...My mother lives in Atlanta, Georgia.  The rash has somewhat gone away its more the aching in the joints.

[JackieCalifornia]

Symptoms are different for everyone, depending on differences in immune systems and neurology, and on the other infections (like Rocky Mtn Spotted Fever!) which mix up the symptoms in strange ways.

A reason to locate an LLMD, in addition to any other MDs your mother is consulting, is that LLMDs are open minded to looking for infections other than the usual suspects (like arthritis plays big for rheumatologists).  

As ill as your mother sounds to be, I'd be aggressive about getting it nailed down, but that's a personal choice for her and for you. Best wishes --  

[maryjane28]

Thank you for the information, my mom is not doing well at all. The rash is pretty much gone but she still have pain in her arms, wrist and lower back. She's nauseated all time and have lost her appetite...Her doctor has her on antibiotics and pain medication so we are unsure if the meds are causing her to lose her appetite or the nausea; furthermore, today she regurgitated some black stiff(only happen 1 time) today. We are trying to get her to go back to the ER but she doesn't know what to tell them since they couldn't find anything the first time. Its very frustrating and scary...

[JackieCalifornia]

I'm sorry your mother isn't feeling better.  ER docs are excellent when things are going downhill, and I can't say whether that fits your mother's situation or not -- but if you or she have concerns that her symptoms need that attention, then you will have to make that decision on the spot.

ER docs are not necessarily the best to diagnose and treat Lyme and its related diseases, however, because ER docs see just a slice of a patient's medical life, and Lyme is a sneaky pete, coming up with all sorts of symptoms.  So go the ER route if you think it wise/helpful, but in the meantime be looking for an MD who can do a more in depth analysis than an ER doc can do in a short visit.  Maybe it's Lyme, maybe not -- but the ER doc may not be the right person to make that call.

*I'm not medically trained, so don't rely on my comments as advice!*

[LORR]

i ordered some doxcycline and i am going to take 100mg t.i.d.  im sure i have lyme.. i will take this for 30 days and see what happens. i have been on it for 7 days having some werid symptoms probably die off. cant hurt my mom says she is a nurse. i ordered doxy from a vet supply.. everyone take some see if you feel better..

[Mazola]

I would like to list the issues I've been facing and see what the general opinion is. I have seen a Neurologist, Back/Spine and Pain Management Specialist, (2) PCP, Ophthalmologist, Orthopedic, and Physical Therapist with minimal answers.

History: I have had viral Meningitis, Bell's Palsy, Hypothyroidism, Costochondritis, Fasciitis, Dizziness/Vertigo while driving, random tingling/numbness in hands, feet, lips, and nose, burning or irritation in ears, anxiety due to the Costochondritis, and sleep apnea. I've been involved in 4 accidents where the vehicle was a loss (always the other person's accident/citation) but with only whiplash for injuries. I've also had at least two embedded deer ticks.This has all happened in the last 10 years starting with Meningitis.

I have had endless test for a variety of the above issues but have felt that something ties them all together but no cooperation from the doctors. I've recently switched my PCP and she feels that I have chronic Lyme's Disease, which certainly fits the symptoms. I am two weeks into Doxycycline treatment that will last a month and will follow-up from there.

Please tell me what you think. Does this sound reasonable? I have a baby coming that was due on October 1st and it scares the heck out of me that I am in such bad shape right now and really have been since the beginning of this year. Thank you immensely in advance!

[patsy10]

Your symptoms certainly are consistent with Lyme and you live an endemic state.  I'm pretty sure I have had meningitis though it was not diagnosed.  I wonder if your viral meningitis was really Lyme meningitis????

Myself and many others here have been to several doctors with no diagnosis.  If it were me I would find a doctor who specializes in lyme disease for an evaluation.  

What have your lyme tests shown?  The ELISA is the first screening test but is a poor screening tool.  Lyme is difficult to diagnose.

You may want to repost this under a new thread as others may miss it here because this is the welcome message.

[johnnylight]

Hi, After 7 years and 30 Docs i know first hand how tricky Lyme Disease is and how because of over 100 different strains now and 100 different symptoms that Lyme can cause.  Lyme test are most unreliable and only 50 50 at best Lyme i s the fastest growing Disease in America now 10 faster than AIDS and is grossly misreported.

My Lyme Literate saved my life and i always agree when i hear people say go to a LLMD because you don't bring a Mercedes to Ford dealer if think you have Lyme you need a Lyme specialist period or you might be wasting your time. Some of my blood work was borderline Lyme but they still refuse to acknowledge or treat me for Lyme.

[wonko]

"You don't bring a Mercedes to Ford dealer if think you have Lyme."--Love it!  Well put!

[CFalcon04]

@ Johnnylight - Right on!

Do not expect a regular doctor to find Lyme. My aunt suffered for nearly 20 years with Lyme before she was diagnosed. She was tested many times and at prestigious facilities such as the Mayo Clinic and the Cleveland Clinic. They initially diagnosed her with fibromyalgia and CFS, which if you read, are common misdiagnoses for Lyme. She finally found, through the internet, a Lyme Specialist in Hermitage, Pa, and the doctor was able to finally find her lyme. As she remembered, she had been bitten by a tick in the late 80s that she had picked up in her pachysandra, which is noted for harboring ticks. She developed the Bull's Eye Rash, but it soon went away, and without the rash to show to a dr, and without them being able to find Lyme, she went undiagnosed for all those years.

One of the problems with Lyme is that it will not present itself after you have been on certain meds, especially antibiotics. If you think that you have Lyme, do your research and find a LLMD near you. It may take several Lyme tests, as Johnnylight said, to catch the Lyme, so one must be vigilant and patient. Do not try to self medicate yourself. Lyme is not an illness to play around with and is very serious. Also, as my aunt found out, you will not just be diagnosed with Lyme, as it usually carries other diseases and parasites, that during treatment, may try to escape your body. This is why it is important to see a qualified dr, so that when these start to present themselves, they can be treated. Also, do not think that you will take a month or two's antibiotics and you will be cured, especially if you have had it for any large period of time. It is a very difficult disease to treat, and almost like chemo, you have to nearly poison yourself to kill the Lyme because it gets into all parts of your body.

Sadly, I cannot tell you what the outcome of her treatment was, because she died 4 days after bypass surgery in 2008. She, herself, did believe that part of her problem leading up to the need for such a surgery was partly caused by the Lyme. Good luck to those of you who have had, do have or may have Lyme, and get it checked ASAP!

[johnnylight]

Sorry about your aunt and thank you for taking the time to respond. So many people sick now and don't even know they have Lyme and kids with adhd add some of them probably have Lyme or co infections caused by Lyme tick.

So many labels like CFS, FIBRO,ADHD,ADD,AUTISM some Docs believe these are all caused by Lyme, the Lyme connection is deep and wide and they refuse to explore it and try and connect the dots. (very sad) kids are always playing out side in the woods, fields and have pets etc. most moms would never see a tick bite on a kid they like to go to warm places on the body.

Can't be a epidemic of ADHD and they give these kids medicine that is like cocaine it's messes with the mind. I saw the rash and didn't understand at the time what it was or i would of took the proper action. Education is key with Lyme but they keep saying Lyme is NO PROBLEM? it's a real shame once we get past stupid maybe they will wake up one day to what going on.

Thanks again