I live in MN, and my world is falling apart. About 7 weeks ago started having chest pains, and realized my heart rate was running high. It does not seem to come down no matter what I do. They ran ekg's and echo' and say my heart is fine. I was already having a low back issue, but the pain was now wrapping into my hips and aching more so. My hair started thinning and am constantly tired. I wake up at night with chest pain, or with my chest sweating. Only my chest and no other areas! After the docs could find nothing wrong, and told me it was my stomach, which I knew it wasn't. I had a gal do a bio meridian on me. She told me I had Lyme which she detected in my back and babesia which she detected around my heart. I was surprised, but it got me too thinking, and I then realized I did have a very small tick back in the fall in my hair line that I was unsure about. It gets itchy in that spot sometimes too. I had my husband check it, and it is still red, blotchy. In the past few days additional symptoms have come on, and the achiness is now in my hand, all though my spine, shoulders, and one foot, and I've become constipated which I normally am not. I was back at a different doc today, and mentioned everything, he told me to go to Mayo to get looked over as he was unsure. But what astounded me was he wouldn't even look at my bite area! I have read through many of the posts here saying stay away from Mayo. So if someone can recommend a good Dr that is familiar with treating Lyme I would appreciate it. I live in northern MN, about 4 hours from twin cities, but I am willing to travel. My test for Lyme, came back negative, they ran the test about two weeks ago. Thank you all for your other posts, I have found this forum very informative and helpful.
Posted by LymeXtu (Member # 24590) on :
Hi Sophie,
I am breaking up your post, many people here have a hard time reading large blocks of text:
I live in MN, and my world is falling apart.
About 7 weeks ago started having chest pains, and realized my heart rate was running high. It does not seem to come down no matter what I do. They ran ekg's and echo' and say my heart is fine.
I was already having a low back issue, but the pain was now wrapping into my hips and aching more so.
My hair started thinning and am constantly tired. I wake up at night with chest pain, or with my chest sweating. Only my chest and no other areas!
After the docs could find nothing wrong, and told me it was my stomach, which I knew it wasn't.
I had a gal do a bio meridian on me. She told me I had Lyme which she detected in my back and babesia which she detected around my heart.
I was surprised, but it got me too thinking, and I then realized I did have a very small tick back in the fall in my hair line that I was unsure about. It gets itchy in that spot sometimes too. I had my husband check it, and it is still red, blotchy.
In the past few days additional symptoms have come on, and the achiness is now in my hand, all though my spine, shoulders, and one foot, and I've become constipated which I normally am not.
I was back at a different doc today, and mentioned everything, he told me to go to Mayo to get looked over as he was unsure. But what astounded me was he wouldn't even look at my bite area!
I have read through many of the posts here saying stay away from Mayo. So if someone can recommend a good Dr that is familiar with treating Lyme I would appreciate it.
I live in northern MN, about 4 hours from twin cities, but I am willing to travel.
My test for Lyme, came back negative, they ran the test about two weeks ago.
Thank you all for your other posts, I have found this forum very informative and helpful.
Posted by LymeXtu (Member # 24590) on :
Sent PM
Posted by Lymetoo (Member # 743) on :
He knew if he sent you to Mayo that you would then "have to forget" about the possibility of lyme. Mayo will NOT diagnose Lyme.
No one wants to touch it. I'm sure LymeXtu gave you some good info on nearby LLMD's who WILL help you!!!
I forgot to mention there is a Duluth - Superior support group that will meet on Tuesday Jan. 7th :
We will meet at 7 PM at St. Luke's Hospital Room 329 on the far East End of the building 3rd floor. Please use the front Hospital Entrance
More info at the mnlyme.com website.
You could get alot of information at that meeting too !
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for MN.
When you call for an appointment, ask if they have any cancellations or a waiting list. Patients have gotten in sooner by doing this.
You need to be evaluated and treated by a LLMD. Non LLMDs have no clue about this horrible disease and its complex treatment!
Please STAY AWAY from Mayo! The consensus on Lymenet is, "Hold the Mayo!!" because they have no Lyme-literate doctors (LLMDs) on board and those patients who have gone there have said it was a waste of time and money!
Please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posted by Sophie7 (Member # 42971) on :
Thank you all for you posts. I have learned a great deal in the past two days. Has been quite an eye opener, and explains the dr's reactions here and the way they blew me off so fast.
I was so hurt that my family dr of so many years, would just do that. But now I know why.
Thank you to all of you for the help you give myself and others. I would be so lost if I had not come across this site, and you replied.
I have an appt with someone on the 6th. That was a cancellation spot, so guess I have to wait, should be thankful that even opened up.
But the symptoms seem to be getting worse by the day, so I will keep rummaging in the pantry for that can of patience I can't seem to find, lol. Thanks again.
Posted by Hughmn40 (Member # 42955) on :
Sophie7, Me and u as well. I live in MN Too.
I just went to St Marys today to satify my family members.
In Rochester MN. They had Dr. superviser come in and question my mental health.
I was disgusted and affended. I also missed a day of work I couldn't afford to miss.
Check my posts. This community told me what i was in for. So I had a good idea what was to come.
I know somethings wrong with me, I can feel it.
I'm going through exact same thing. With very little understanding from even the closest people in my life.
I am so sure I got lyme and nobody believes me. NOT DRS, Family, Wife.. Only time I feel better is when I talk to people who have been touched by lyme or llmd takes a few minutes to comfort me on the phone.
It feels so good when someone finally understands. Unfoutanitly it isnt my loved ones.
Its a hard place to be. I wish you the best and I am gonna get the help I need. Im gonna be at the peak of health again. Good look
Posted by Sophie7 (Member # 42971) on :
I am so sorry to hear that, that is unbelievable!! Very frustrating for you. How disheartening.
May I ask, if any of you have tried the holistic approach? I had a friend ask me to speak with this chiropractors office, they do this testing, kind if like bio meridian, or electro manga something, sorry, bad with memory lately.
Anyhow, I didn't tell them much other than I was having low back and heart issues. They went through checking points and things, told me I had lymes and babesia, and offered me a tincture to take and told me it would clear it up. It would take time, but to keep at it. I'm to go back in 4 months to see if it is out of my system,
It confers with what the other gal told me, but I wonder how many people have tried this path? This clinic tells me they see many people with the advanced Lyme and it can be helped.
Wondering if this is a good path, or to hold out till my appt with the LLMD dr,
Posted by TF (Member # 14183) on :
Sophie, there are many holistic approaches to lyme disease and many people have tried them. They are all eventually discussed on this board.
The concensus is that a person MUST use antibiotics at least at first to get this disease under control. Lyme and babesia are just very, very hard to kill.
After some time on antibiotics, some use other methods, especially if the antibiotics have very bad effects on them to the point of being intolerable.
But, just know that the antibiotics generally do make you feel worse at first. That is the famous herxheimer reaction you can read about in Burrascano.
If there were a tincture that cleared up lyme and babesiosis, everybody would be talking about it, using it, and lining up to get it! If you find out what this tincture is, you can then do a "search" on LymeNet and see what others have said about it.
See the "search" function near the top of the screen.
You definitely want to keep your appointment with the lyme doctor. If you cancel it, you have committed yourself to this tincture approach for months because that is likely how long it will take to get another lyme doc appointment. You were very fortunate to get in so quickly as a cancellation occured. Most people wait many months to see a lyme doc.
You can look into the tincture and see the lyme doc both. So, keep the doc appt.
According to Burrascano (and I think he knows something about lyme disease), you want to start antibiotic treatment as soon as possible. The earlier you start treating lyme with high-dose antibiotics, the better the success (cure) rate.
"GENERAL PRINCIPLES
In general, you can think of LB as having three categories: acute, early disseminated, and chronic. The sooner treatment is begun after the start of the infection, the higher the success rate. However, since it is easiest to cure early disease, this category of LB must be taken VERY seriously. Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word." (page 3)
My advice is to do an awful lot of research on any lyme treatment approach before you decide to take it because what is at stake is your health for possibly the rest of your life. The Burrascano approach has stood the test of time and works for a large percentage of people. So, I advise you to start out with it.
This approach got me and about 5 of my friends well. Plus it has gotten many people well whom I have met through LymeNet. I know of at least 2 this year alone who got well by going to a top notch Burrascano type lyme doctor.
We just don't have many coming on LymeNet and telling us that they were cured in other ways. I've been on this board about 10 years now, and that's what I've seen.
Here are some recent posts about other approaches: