As my user name suggests, I am - HIGHLY - distressed.
Over the past year and a half, I have watched my wife deteriorate before my very eyes. What was was once an extremely vibrant and vivacious woman in her mid-50s, is now a shell of her former self.
She suffers from a laundry list of symptoms, including, but certainly not limited to:
loss of muscle tone and dexterity in feet and hands;
constant pain throughout her body;
hour-long episodes (many days, multiple times per day) of sweats that, by time they end, she is drenched like she has just come out of the pool, and I can literraly wring out her clothing and the sheets and blankets;
weakness;
loss of appetite (and occasional nausea);
severe anxiety;
depression;
never wants to go out of the house, et al
Additionally, she suffers from constant infections in her mouth due a botched oral surgery (implants) from three years ago, and has a variety of problems with knees, shoulders, back, from a car accident and skiing accident that occurred over 25 years ago.
I have have her to neurologists, rheumatologists, pain management, ENT specialists, infectious disease doctors, etc.
We always come out with a result something along the lines of: "I THINK she MAY have...rheumatory arthritis; psoriatic arthritis; fybromyalgia; pdeudo-gout"...and on and on the list goes, with not one doctor able to say that she has something SPECIFIC.
I recently read an article about Lyme's, and light bulbs flashed in front of me! I'm now led to believe that she may very well be suffering from Lyme's.
Over the course of the past week, I have read and researched on this topic, and Lyme Literate MDs in my general area (with lists of names provided by ILADS).
I've reached out to many of these doctors, and have found that it is months to get an appointment, and that - so far - none of them accept insurance. I understand the insurance game, now that I've read the "Why Lyme Doctors Don't Take Insurance" post on this board.
What I would really like to find out is board members experiences (recommend or not recommend) with various LLMDs in the New Jersey/New York area - and why they would, or would not recommend - a certain doctor. I ask this, because I believe that time is of the essence to help my wife.
I thank you for welcoming me to this board, letting me tell my wife's story, letting me reach out for help (which is something I rarely do), and thank you in advance to all who reply to my plea.
Sincerely,
Distressed
Posts: 6 | From mid east usa | Registered: Aug 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Have you looked at the Burrascano Lyme Treatment Guidelines found here:
Those heavy sweats certainly sound like babesiosis. Nearly everyone who has lyme disease also had babesiosis.
You can read the symptoms of it on pages 23 and 26.
Typical lyme symptoms are listed on pages 9-11.
These diseases certainly cause severe anxiety, depression, loss of brain function (brain "fog" loss of memory, and many other symptoms), weakness, etc.
Regular doctors such as the ones you have seen, will not recognize these symptoms of lyme disease since they have been miseducated about lyme by the Infectious Diseases Society of America.
ILADS has a doctor referral service, but you must realize that they do NOT know these doctors. Any doctor can sign up for this service. They may not know anything about lyme disease and may have never treated a case!
The ILADS will send you names closest to you. That is NOT how you want to choose a lyme doctor. Instead, you want personal recommendations.
The docs I recommend to you are in the Washington, D.C. area and its suburbs.
I can give you the name of a good doctor who can see your wife within a week. He will do telephone appointments for 2 months so that you only have to appear in person every 3 months.
He will test your wife for ALL the tick-borne diseases and treat her for all that she has or her symptoms indicate.
Nearly every lyme patient has lyme, babesiosis and bartonella. Read about these diseases in the Guidelines.
I can also give you the name of a top lyme doctor in D.C. who has a 3 month wait to get in. She only requires patients to come to the office in person once every 6 months.
I will send you both names and my recommendations of them if you like.
Because of how sick your wife is, you may want to start with the doc who can see her quickly.
Just know that these docs do not take insurance. And, the first appointment is quite long, so it is always very expensive.
So, if you change doctors, you will pay the high price for the first appointment each time you go to a new lyme specialist.
You pay for expertise. These doctors have a medical practice that is 100% lyme disease. That is how a doctor become proficient in treating someone with this very complex disease which is really a number of diseases.
I will send you both names now.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I did download a copy of Burrascano this morning, but have not had a chance to start reading it yet.
I'm shocked (but, knowing how "Big-Medical" operates, probably shouldn't be) that any doctor - qualified or not - can register with ILADS. That is truly scary!!
I would be most grateful for you doctor referral contact info. Expertise and proper care is the only thing that I want for my wife, preferably the more holistic, the better.
Thank you, again!
Posts: 6 | From mid east usa | Registered: Aug 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
ILADS simply cannot employ a staff to evaluate every doctor who wants to participate in their doctor referral service.
This service is not the main part of their mission.
Therefore, they just send out the names of those who have registered with them.
They have been informed about the problems this has caused people, and at one time I heard they were considering some type of test before a person could register as a lyme doc.
But, as far as I know, nothing has been done about sifting through the doctors who desire to use the ILADS doctor referral service.
ILADS is a great organization, but their referral service is being taken advantage of if you ask me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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"There are NO good LLMD's in NJ. NJ is a wasteland of bad docs. I can tell you from years of experience, unless you go with an established doc (of which there are only a few on the east coast) you will get under-treated and continue to relapse.
PLEASE TAKE MY ADVICE. NJ is a bad place for ticks and a bad place for tick doctors."
"The LLMDs in NJ are not very good based on patients' experiences. People start with them then end up going to see other LLMDs out-of-state."
"Over the years, the folks in New Jersey have said that the best Lyme doctors are not there."
"I strongly suggest that you be willing to travel outside of New Jersey to get good treatment."
"There are Lyme doctors in the area you have named, but I don't recommend any of them. To get a good Lyme specialist, you will have to be willing to travel. At least half of all Lyme patients go out of state for their care."
Your wife needs 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.
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry to hear about your wife's situation and yours too! Good to know you are doing the research needed to assist her. Thank you for that!
As far as there being no good doctors in NJ... that's simply not true. The quotes about NJ doctors all came from the same person- one person who continues to repeat that same info over and over and who also continues to recommend only a couple of docs in the DC area for just about everyone coming to LymeNet.
As for ILADS sending out names of people who know nothing about Lyme disease- not true either. So let's move forward.
With the right diagnosis and treatment I do believe your wife will be feeling better soon. It sure sounds like a typical missed diagnosed Lyme case to me.
Please go to www.MarylandLyme.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 in many fields who are treating Lyme & TBD's in all of the states.
Here are some ways to locate alternative health care professionals too if needed.
May I also suggest, looking at the symptom list you've provided, she may have also gotten Babesiosis. It is famous for causing drenching sweats like you describe. It can also cause "anorexia" or simply lack of appetite, and weakness amongst other things.
Some women can mistake these sweats for menopause (although these sweats are much worse), and doctors pretty much ignore the situation all together.
Here is a list of tick borne diseases that includes the diagnostic info needed, the symptoms of each one, and treatment info.
May I suggest... look at the links for Babesia and also Bartonella. Bartonella can also cause sweats (and emotional/mental symptoms), but drenching sweats is most associated with Babesia.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here's an example of what you can get when you use the ILADS doctor referral service:
See this May 14, 2017 post by a lyme patient:
"My first LLMD was from ILADS response. She really didn't know what she was doing. She didn't even know how to check for co-infections..... TF gave me great recommendations."
posted
Many thanks to TH, Tincup, Hopingandpraying, and Debra kelly!!!
The information that all of you have provided is (more than) informative. Above all, it has renewed my faith that I will - with the help of others, obviously - be able to assist my wife gain control of her life, happiness, and vibrancy once again.
Posts: 6 | From mid east usa | Registered: Aug 2017
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posted
Hello, sorry to intrude on your post however both Drs you have stated sound very promising... Could you please send me there information it would be greatly appreciated..
Robin
Posts: 4 | From Palm beach Florida | Registered: Sep 2017
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