My parents dont trust LLMDs

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SJ-CAGuy777
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/11/2010 1:09 PM (GMT -6)   
I think I was recently infected with LD. I developed a nonirritating rash last month, and several weeks after it disappeared I began experiencing neurological symptoms.

I think I should see an LLMD. But my parents are afraid they are scam artists and charlatans that will likely provide me with care to keep me sick (and force me to continue to see them at huge costs).

I am not sure what to think, or where to go for help.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/11/2010 1:18 PM (GMT -6)   
Post your location, and someone here will help you find a LLMD close to you.  Than do a search and see what others have said about him.  There is good and bad, just like with any doc.  Some of them do not take insurance due to problems with insurance paying them.  I have searched a few LLMDs and some have good reputation, some not.

Good luck!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/11/2010 1:26 PM (GMT -6)   
Hi SJ-CAGuy,

Welcome to the forum!

If you need a LLMD recomendation, just let me know and I will send you some information.

Are your parents willing to bring you to your primary doctor? Maybe you can start taking antibiotics with them.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 8/11/2010 1:49 PM (GMT -6)   
Hi SJ-CAGuy,

If SJ and CA mean San Jose, California (wild guess here), email me and I can tell you about LLMDs I know of in the area, and what I know about them. When I first started with this I shared the concern your parents have. But I have since learned that much of the bad press is not warranted and is based on political rather than medical opinions.

Rose
I have Lyme; it doesn't have me.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 8/11/2010 4:34 PM (GMT -6)   
Hi SJ-CAGuy,
 
Welcome!  Do you need your parents to see an LLMD?  If so, perhaps print out responses from the members here as well as the sticky thread on top called "New to Lyme?  Start Here!"..
 
Hope you get help,
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 8/11/2010 5:14 PM (GMT -6)   
SJ, could you tell us how your parents came to the conclusion that LLMD's are scam artists? Where did they get their information? Have they done research on google about lyme disease and the controversy behind it? Obviously your parents care for you and are wanting to watch out for you like all good parent want to do for their kids, even when they're adults. There is a lot of politics involved in this disease. Because of the controversy, politics and money involved in this disease, there's been an ongoing battle taking place between the ILADS and IDSA. See these two links for more information about this.

www.ldsg.org/index.php?id=71
lymemd.blogspot.com/2009/02/war-idsa-vs-ilads.html

Due to this controversy that's been going on for many years, lots of valuable time and money has been lost in scientific and medical research of this disease, as a result, many Lyme patients have suffered needlessly with this disease. In fact, just this past few weeks three lyme patients have committed suicide because they were unable to get the treatment they needed to get well. The IDSA has made it impossible for many LLMD's to treat this disease with long term abx because they don't believe in chronic lyme disease (which is what I had for 15 years). The medical profession, AMA, and the insurance companies have done more harm to lyme patients than anyone else, all because of the IDSA guidelines.

I suggest your parents spend some valuable time researching this disease. Lyme disease is the fastest growing infectious disease in the country, with as many as 200,000 new cases every year! Your doctor means well, and he/she has probably told you (or will tell you) Lyme is no big deal, or there is no lyme in our state, etc, etc. Sadly, many PCP, and other specialists are ignorant about this disease, and many just don't want to accept the truth about it.

Here's an excerpt of what one person expressed on their blog:

"The most important fact I can tell you and that you must remember and be aware of is that your current primary Md (no matter how much you may trust or love him) likely doesn't know the facts surrounding this disease and is most likely totally uneducated about Lyme Disease. He/She will likely tell you Lyme is "rare", "easy to cure" or you simply don't have it, because "Lyme doesn't exist in this area". Please be aware, all can be untrue statements. Your doctor does not know the never ending symptoms of Lyme and all the ways you have likely been exposed. This includes "specialists", Neurologists, Infectious Disease MD's and Md's from all fields of medicine, remember, they know very little regarding Lyme Disease, if anything at all. Follow your gut instincts, your instincts will never fail you. If you are symptomatic, get tested through Igenex and see an LLMd, why go on wondering?

I wanted so much to believe a mainstream Md could diagnose me, I put off seeing a Lyme doctor for a long time, precious time that the infection grew. After seeing 12 doctors and having to research my symptoms online, I realized I likely had Lyme Disease and sad but true, none of the Md's I was seeing would ever be able to diagnose me and they never did". Source:www.truthaboutlymedisease.com/

As much as your parents love and care about you, and as much as you may trust your PCP, you need to do what you feel is best for you. Read the stories on this forum and see how many people, like you, who came here years ago thinking their disease was not serious, because the PCP told them so, or that they could get by with two to three weeks of abx treatment and get well. They trusted their doctor and followed his/her advice. Sadly, as time went by they got sicker and sicker and eventually the disease took over their body and it became harder to treat.

The thing about this disease is, the sooner you get treated by a LLMD the better your chances are of overcoming this disease. If your tick bite was recent, you have an excellent chance of recovery, but not with the typical two the three weeks of doxy treatment that most non-Lyme doctors will recommend. That's not going to cut it. My advice is that you forward this information (this whole thread) to your parents and tell them to do their own research and come to their own conclusions. You too do your own research. I think the evidence will convince you that LLMD's are not con artists, these people are you best chance of ever beating this disease.

I pray that you will come to the right conclusion after doing your research. What I would give to be able to turn the clock back fifteen years with the knowledge I have now. If I knew what I know now, I wouldn't even be here typing on this forum. The people here who are answering your questions have nothing to gain by telling you to see and LLMD. We are speaking from experience, for many of us, painful experience. Our only desire is to help educate you so that you don't have to go down the same painful path that many of us had to go through. You are still young and have a lot of life ahead of you. Don't mess it up by listening to people who may have good intentions, but have wrong information.

If you have any questions feel free to email me, or have your parents email me if they'd like. I'd be glad to give you my phone number too if you click my email icon and ask for it. Both my wife and I have this disease, I hope and pray you don't have to go through what we and so many others here have had to go through based on false information from so called "specialists".

Keep in touch with us and know that we here at HW are here for you.

Gary

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/11/2010 11:16 PM (GMT -6)   
Great post, Gary!

SJ-CAGuy777
I agree with Gary. We don't gain anything from being here, except finding emotional support to help one another. I have 3 kids and I am in relapse. I would rather be healthy and do something with my kids or read a book or watch tv, than being here! But I have Lyme, my first PCP said I did not, even though my tests came +, I have wasted one year believing him, now my new pcp said I am + and I am making an appointment with a LLMD. She was nice enough to put me on abx for time being.

I wasted a year, Gary wasted 15, others wasted more or less... Use your time to fight the disease, instead of looking for the right answers from drs that do not know enough about lyme to make the right call...

Watch this movie--it is a short version, you owe it to yourself to educate and empower yourself... THe more you know and the sooner you start treatement, the higher are your chances of recovery... Here is the link to the movie:

www.snagfilms.com/films/title/under_our_skin

SJ-CAGuy777
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/12/2010 4:32 PM (GMT -6)   
Thank you so much for the insight. From everything I have read and the experiences i have heard about Lyme is a real, true problem. My parents have consulted some friends of the family who are doctors--these people have very low opinions of the Lyme specialists. But my experience so far with trying to deal with my symptoms through the "regular" channels are becoming frustratingly futile.

I really appreciate all of your support and input. I think I will meet with a local Lyme support group continue to have the discussion with my parents. Thanks again!

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 8/15/2010 11:29 PM (GMT -6)   
My LLMD is the nicest, most genuine doctors of all the 30+ doctors and specialists I saw before someone (he) finally helped me. I was so desperate for someone to help me at the time, I would've seen ANY doctor regardless of their reputation! I don't have a great opinion of the medical community after what I went through, so I can understand your caution, but try not to limit your possibilities by making pre-judgments... Honestly is always good, too - let the doctor know the concerns you and/or your parents have.

Good luck to you,

Rachel

allieann
Regular Member


Date Joined May 2010
Total Posts : 116
   Posted 8/29/2010 12:50 PM (GMT -6)   
SJ-CAGuy777

If you live in San Jose, Calif. and if you choose to email me, I will share info. with you as we live in San Jose, CA. also.
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