I contracted Lyme 3 years ago, and it has been rough going since. I like my GP doc, but he seems unaware of "chronic lyme" realities.
I've been experiencing symptoms like:
fatigue
weird feeling in middle of night that my bones were tingling.
chest pain and pressure
at night, leg muscles would tense up just below pain threshold. Would clench muscles to override the feeling.
rapid weight gain; craving sugar, salt
Later, overt muscle pain & weakness, esp in quadriceps, calves
sharp calf cramps (charleyhorse) , esp in bed in early morning.
foot neuropathy
joint pain – hips, knees, one ankle
neck stiffness
body sensitivity to hot and cold
confusion; concentration, memory problems
I've had a checkup and heart and lung tests. All ok. I'm not sure where to go with this. I think I'll contact the doc and ask for a referral to an internal medicine guy. I'm in the mid-Hudson Valley of New York State.
Blessings.
Posts: 5 | From New York | Registered: May 2016
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Your symptoms sound like Lyme to me. 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.
posted
Thanks so much. There is a lot of info there and in the PM. It's going to take me a little while to digest it. I'm still leaning toward starting with an internal med guy, just to see what he says.
I really appreciate your taking the time to give me some valuable feedback on my problem.
Blessings.
Posts: 5 | From New York | Registered: May 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Im guy ,id doc wont help if they do its for 30 days...there are other modalities of treatment ...im duc could do diagnostic llike heart block test or mri ..but they will say its all normal parameters, even if it is not ...get readings..but treat soon ..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Paul, since you are new to LymeNet, I want to be sure that you understand that lyme disease is embroiled in a major medical controversy. It has been going on for over 25 years.
There are 2 "camps" when it comes to doctors' views of lyme disease:
1. the majority of doctors in the U.S. have been miseducated about lyme disease by the Infectious Diseases Society of America (IDSA). The IDSA has taught our doctors that lyme is RARE (so rare, your doctor doesn't ever expect to see a case) and EASILY cured (like with 2 weeks or 28 days max of antibiotics).
So, based on this, they believe lyme is no big deal. If you don't get well after a little treatment, you must be a mental case or have "post lyme syndrome"--a syndrome they made up to explain why you are still sick with the same symptoms.
2. the other "camp" is our lyme speciaists, most of whom have had lyme disease themselves. This caused them to research and think for themselves rather than relying on the information put out by the IDSA. These docs know that lyme is worse than an epidemic in this country and that lyme is very DIFFICULT to cure.
So, there you have it. Go to an internal meds doc and he will almost certainly be in camp #1.
Once you get tired of being offered antidepressants or treated like you are a mental patient, then you may want to go to a lyme expert and find out what he thinks of your case.
We have all been treated badly by doctors as we searched for our diagnosis. Hope it doesn't happen to you, but the chances are it will.
Then, the docs who preach the truth about lyme get persecuted by state medical boards for treating lyme patients until they are well (long-term treatment). That is why we won't put their names on the public board.
When it becomes known who is treating lyme long-term, the state goes after them and tries to take away their license.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get diagnosed with lyme and also get good lyme treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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As I thought about this overnight, a night that was quite hellish, I realized that the normal doc is very probably going to stick by the book. He would be part of a very large medical group of this area, and very restricted by their tight policies I would think. The only benefit I could see would be if he could refer me to a nearby doc who would treat.
TF, thank you for that info. I am somewhat aware of the medical controversy going on. I watched Under Our Skin over a year ago. I recently became aware of the Plum Island controversy, which would explain what much of the resistance to finding out what this disease is really about.
I'm going to give this a little more thought, but probably need to start making calls.
Blessings.
Posts: 5 | From New York | Registered: May 2016
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posted
You may post over in Seeking a Doctor to find a doctor near you. Any referrals from your own PCP will land you in the office of an infectious disease doctor, which would be a dead end, unfortunately.
Begin by upping your magnesium intake and changing your diet. See if that helps!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Paul:
One of the most prominent LLMD's in the world is in the Hudson valley. The famous Dr. H.
Expensive, but worth it. I would see him if I were you.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The trouble is, Dr. H hasn't taken any new patients for about 2 years. That's how long his waiting list is.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
You can ask for LLMD referrals in the Seeking A Doctor section. Other doctors are not trained to deal with this.
Lyme treatment occurs in three areas - kill/deter the organisms, detox and fortify the body. You can start to read about it all in the stickie at the top of Medical Questions, Important Information about Lyme and Co-infections. Especially the Burrascano guidelines.
I call it going to Lyme school, to understand more about the organism and what it does and what we do about it. We're all different in how we respond so the trick will be to find out what works for us.
Posts: 13116 | From San Francisco | Registered: May 2006
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
A new friend said she has been on the wait 3 ys...she sees him next month...paul. i am glad you see the politics tf has very wise words as does everyone else..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Lymetoo: thanks. I'm onto the magnesium/diet thing. This is the impetus I need to get that right. And reading in the Burrascano guidelines the importance of exercise was a confirmation in the spirit of what I've already begun to do. So some of the fundamentals are falling into place.
Robin - yes, I have visited the Doc section, and got some great leads there. I've also been doing my own poking around, and from what I've gleaned, Dr. H has become very busy at the teaching/apostolic level, if you will, and cannot spend the kind of time with patients that he used to. God bless him for all the good he's done, but I think I might be better off finding someone who is still active mainly at the patient level, rather than waiting years for the first appointment.
This is a very helpful site. May the Lord bless you all.
Posts: 5 | From New York | Registered: May 2016
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I have all the respect for Dr H and saw him for about 18 months back in 2012-2013.
But he wasn't the right doc for me.
I'm seeing an alternative doc in NYC and it is going great thus far. I highly recommend.
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