posted
I really can't brain atm to make this sound at all smart so simply put my memory, brain is just gone my heart is crazy hurting and I am so fatigued I slur when I talk
I have a positive CDC from Igeneix that my doctors in Canada refuse to look at and say I am healthy and I frankly just want to die from the pain I am in,
I really need to find a LLMD or a neuro lyme doc,
I have had balsy? the facial num thing sorry I don't mean to be rude um if anyone knows like Montana area or something like that please let me know asap. thank you
(breaking up the post for easier reading for many here)
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Maxamillion, I know what you are talking about because I experienced it for years!
Until folks come along that know of lyme doctors in Montana, check out the U.S. lyme support groups near you. See Support Groups on the left side of the page. Contact as many as you can that are near you.
Find out from them who is getting people well. What you have to know is that MANY doctors treat lyme disease, but only a few have enough expertise to get rid of this horrendous disease for a person.
You have to find one of those doctors. If you can travel to Washington, D.C. once every 6 months, I can give you the name of a fabulous lyme specialist. There is a 3 month wait for the first appointment.
You will do telephone appointments with the doctor every month and email with problems, etc. You will LOVE this doctor and she is extremely experienced and can handle severe cases such as you are describing.
Please consider her. Many, many lyme patients have to travel for their care. It is practically the norm as there are so few good lyme docs.
So, if you can fly here twice per year, let me know and I will send you all the info about this fabulous doctor.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
OK. I sent you the name and info on the doc. including her medical degree.
You will definitely get your brain back. I had undiagnosed lyme disease (and babesiosis and bartonella) for at least 10 years before I was properly diagnosed.
Still, by going to a doctor who follows the Burrascano protocol, I got my brain back and got rid of all my symptoms. I was cured 12 years ago!
Read and STUDY this document to get your education on this disease:
The more familiar with it you are, the more you will understand of what the lyme specialist is telling you.
Let me check with another Canadian that sees her to see how he gets his prescriptions filled. I know Canadian pharmacies will not fill them.
So glad you can fly!!!!! This is such great news because that part of the U.S. has VERY few lyme docs and a real bias against treating lyme disease. Something like Canada from what I hear.
(breaking up a paragraph for easier reading for many here)
posted
Canada is awful, I have been sick for going on 10 years I am 30 years old now, it started with the numbness tingling in my hands and fatigue, then I was diagnosed with mono a bit after that.
Doctors refused to do testing so I paid for Igenex to do it and it came back IGM positive IGG negative CDC though, and Cd57 was really low,
then I started to experience chest pains etc my doctor called it CFS then Fibro then she said I was depressed so she put me on a bunch of meds which did nothing and she is like oh well,
went and saw a different doctor he is like it's Canada we don't have lyme, I said I travel to Long island NY every summer for 2 months of the year grandpa lives in Sag Harbor, and has a bunch of deer on the acres behind him.
I have had doctors say lyme doesn't exist and I am over dramatic. I have gone into the emergency in such bad chest pain crying wishing I could die from the pain I had and they just brush if off and tell me to relax and that it's stress related.
The doctors here are horrible and I have had countless times where I can't tell if this is reality or a dream anymore.
(breaking up the post for easier reading for many here)
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Max, Welcome to lymenet. Everyone here believes you because we have been exactly where you find yourself now. Unimaginable pain, brain fog, crazy, scary, debilitating symptoms yet NO doctor will help you.
I too, was told to see a psychiartrist so I could learn to live with my many symptoms. I couldn't remember what shoe went on what foot. I had to literally think about how to open my eyelids to see !
Listen to your body, don't take no from any doctor, fight with whatever fiber you have left, and get to a good LLMD.
Lymenet has infinite answers. Search engine is a treasure trove of information. Lymenet posters are the smartest people you will ever meet when it comes to Tick Borne Infections.
Good luck to you.
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
posted
Welcome to Lymenet! PM sent for upstate NY, MD & DC.
So sorry you are going through this, but you are not alone.
My son experienced the terrible chest pain you are describing (he still has it, but it has gotten better with treatment).
"It's all in your head" is a very common "diagnosis", when the non-Lyme doctors can't figure out what is going on! Many here have experienced that firsthand.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
*Note: Dr. Murakami was the top LLMD in Canada before he retired.
Read the following books:
"Why Can't I Get Better?" and the new one, "How Can I Get Better?" written by Dr. H, the top Lyme-literate doctor. They are an excellent source of information.
"Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
"Ending Denial (Updated in 2013): The Lyme Disease Epidemic - a Canadian Public Health Disaster" by Helkie Ferrie.
The description written about this book on Amazon is as follows:
"This book includes tips and tricks for getting treatment and testing if you live in Canada. Lyme is becoming a public health crisis in Canada.
An estimated 20,000 Canadians become sick with Lyme every year, but patients are not allowed access to internationally recognized tests and are denied successful treatments.
The disease is readily treatable with conventional antibiotics, even in its chronic form. A call for action from patients, doctors, researchers, and politicians, this book contains life-saving resources with over 450 pages.
It also includes access information to reliable tests for Lyme Disease not available in Canada, as well as effective treatment guidelines."
I only have the name of a LL Naturopathic Doctor in Montana (I don't know of any LLMDs there).
The one LLMD who is a neurologist that I know of is in Connecticut, but he does not treat Lyme, just the neuro problems resulting from it.
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
Btw - I know you are new to Lymenet and have neurological problems as do others here, so I would please ask that you break up your posts into 2-3 sentence paragraphs to make text easier reading.
To do this, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
(breaking up the post for easier reading for many here)
You really are in the best of hands here, the Lymenet community is full of knowledge and got me to an amazing doctor after seeing 17 lame doctors and 13 emergency visits here in Quebec.
Health Canada is utter garbage when it comes to the diagnosis and treatment of tick-borne diseases, a shameful embarassment!
I'll send you some information via pm about the amazing doctor TF is recommending, where to buy meds at a decent-ish price in DC (what I did), as well as a Canadian pharmacy that will accept Rx scripts from an American doctor.
I can also make further recommendations on how to ideally get to DC, how to easily get from the airport to the doctor's office, where to stay within a short 4 block walking distance, where to find wholesome food, and stuff you can do while you're there. I went on April 24th-26th and I'm grateful to my new Lymenet family.
Sending you a pm!
Jory
Posts: 289 | From Montreal, Canada | Registered: Mar 2017
| IP: Logged |
posted
Maxamillion, We have all gone through this craziness of being told there is nothing wrong with us, that is all in our heads we just have anxiety, 18 doctors, MRI's , Scans on and on.
We believe you. If you go to doctor in DC you will be in best hands!!!!
TF recommended Dr. in DC to me as well, and as I keep saying could never thank her enough. You are also lucky to have Jory who has experience coming from Canada. Welcome to lymenet!!!
(breaking up the post for easier reading for many here)
[ 05-27-2017, 02:01 AM: Message edited by: Robin123 ]
Posts: 68 | From new york | Registered: Aug 2016
| IP: Logged |
posted
Maxamillion, you have gotten the typical run-around. May I say, you are very strong to have made it this far. Now we are going to help you to feel better, which will happen with a good doctor and treatment that's right for you. Hang in there!!
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry you've had such a rough time.
If you go to www.VirginiaLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".
Click there to find the names and contact information for health care professionals treating Lyme & TBD's in any state.
There is also a page with support group information, one for alternative medical professionals, educational conferences across the country, labs and their contact information, one for mental health providers, MTHFR and Morgellons providers.
There is also a list of TBD with how to diagnose (testing), a list of symptoms for each disease and treatment info with links to the treatment guidelines.
Hope so much you are feeling better soon! Good luck!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic