posted
I have an appt with a LLMD in a few days so I went to see my GP to get my test records. I then decided to give him the medical report from a clinic regarding a tick bite I had last May.
He proceeded to tell me NOT to look at my symptoms to fit Lyme...and I have to begin to realize that all of the tests are normal and there probably nothing. He also mentioned that there is something called "Chronic Fatigue".
I have been going to him since I was 12yrs old (I am now 35) and I have never went to him for anything like this. And I expected a little more support.
I am very disappointed and I am thinking of switching doctors.
How many of you switched longtime GP's over lyme?
Posts: 98 | From Ontario | Registered: Feb 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sorry to say but you can switch GPs and you will most likely get the same treatment by the next doc when you bring up looking into lyme.
I suggest you read the thread "Why Is It a Secret" if you have not already done so. It is here:
Everyone gets this treatment, so many choose to not discuss lyme with their primary care doctor just to avoid the "you don't have lyme" lecture. Then, you can keep your doctor.
It all has to do with the major medical controversy regarding lyme disease. I explain it in this thread somewhat.
I was told by many doctors that I was "normal. You couldn't be more normal. You are not sick! do you hear me! You do not have lyme in your brain!!" and other such statements while pointing to normal blood test results or ignoring my abnormal brain scan. Meanwhile, I felt ready to be taken out and shot.
It is all from doctors being miseducated about lyme disease.
Read the thread.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- How many of you switched longtime GP's over lyme?
Probably just about everyone. It's very rare to have a GP who will rise up to the occasion and this is a long haul proposition.
You need to be very careful to not give your LLMD's name to your GP. The way the GP has been indoctrinated sounds like he could very well make trouble for the LLMD.
While it's sad that a trusted GP you've known for years is abandoning you, but it's important that you HIRE (yes, hire) a doctor who is at least lyme "accepting" to work with you and your LLMD.
I'll be back with some links to help explain the politics.
". . . thinking of switching doctors . . . " you say. Remember, this is BUSINESS, this is your LIFE. It's not your family reunion.
While some lyme-uneducated GPs can sometime still work with us for the basics, your GP has literally dismissed your business. That ship has already sailed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Links that explain the politics of lyme: --------------------------
You may be able to borrow this from your local lyme support group. Some libraries have it, too.
This is a MUST SEE, ASAP. Then you will have a better understanding of the kind of doctor who can be of help and which can put you at risk. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Give him 'Dr. Burrascano's guidelines to read, and then move along. If any doctor ever suggests to me that I had 'Chronic Fatigue', I'd kick him in the shins and ask him where the heck he got his medical degree.
My GP only considered the possibility of Lyme once we wasted almost a year and I had seen more than a dozen specialists, and my health continued to spiral downward.
At least he had the guts to finally say 'I don't know what's wrong with you and I don't know what to do for you anymore.' He read Dr. B's guidelines I gave him and agreed to send my blood to IgeneX, but at that point I knew he wouldn't be able to treat me properly, and I went to an LLMD.
Please stick with your LLMD and tune out your GP.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I've fired many doctors for treating me like that... So I agree with what the other people have replied on this thread.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Initially he told me that Lyme didn't even exist, approx one month later he decided to give the reg Ontario Lyme test (probably because he knew it would more than likely come back neg...lol).
I told him that I knew there was something wrong with me and I needed to investigate so I was going to go to the U.S. He gave me is blessing and told me that he would re-write scripts and order all testing so it would be covered for me.
...Well I am quickly realizing that meant - as long as the treatment ISN'T lyme.
I am now a little concerned about where I am going to get the monthly bloodtests if I am treated for lyme????
I asked him if Chronic Fatigue caused muscle twitching, buzzing/tingling in the back and head, muscle and joint pain. Malaise, heart palpatations, weight loss, ear sensitivity numbness in the face..etc and he said "Sure it Can"....hmmmmmmmm I don't think so.
Posts: 98 | From Ontario | Registered: Feb 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've been diagnosed with everything under the sun including stress, big top, you name it.
i've had probably about 15-20 doctors in all medical fields.
unfortunately i lost my last one due to some complaints against him and now have none.
i'd say if there are other more friendlier doctors around who believe in lyme go for it. you may have to try out many cause they are few and far between.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mentioned "ear sensitivity"
That is called HYPERACUSIS and it is one of the hallmark symptoms of lyme and other TBD (tick-borne disease) -- and of magnesium deficiency which often goes with lyme.
Magnesium can also help settle those heart palpatations that you mentions.
More detail here, with things that can help along the way: ---------------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I finally diagnosed myself at age 60 after presenting with a rash which was misdiagnosed as ringworm by local walk-in. All standard Lyme tests negative. My PCP was a Lyme-denier. I confronted him and TOLD him I obviously had Lyme and demanded treatment with antibiotics. His response: "You know what? I think you DO have Lyme." If I hadn't confronted him he would have watched me die of this disease. He suggested Yale. I said, "No thanks."
Went to LLMD, got IGENEX pos. and started treatment 3 1/2 years ago.
RULE NUMBER ONE: Get over your love affair with your Lyme-denying doctor. He is KILLING you, and will just watch you die and put something else on the death certificate. It happened here in my town, and I am reporting the doctor to the State Health Department.
RULE NUMBER TWO: Get over your love-affair with your (non-Lyme)diagnosis. You will be on the road to nowhere if you believe you really have fibromyalgia, MS, Lou Gehrig's, etc.
Once I started Lyme treatment I no longer had the need to see any other doctor. Your LLMD will take care of ALL your needs. In 99% of the cases, ALL your symptoms are Lyme and coinfection-related.
I really feel bad for you people in Canada. As bad as the Lyme-denial is here in the US, yours is much worse. I can only suggest seeking out a naturopathic physician, as they tend to "get it".
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Some people's insurance requires them to have a PCP, and many LLMD's refuse to be PCP's.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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AuntyLynn
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Member # 35938
posted
UNDER OUR SKIN is available for free viewing on HULU....
Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
So frustrating. It seems pretty rare to get an understanding GP.
I don't recommend you show the UOS DVD to your GP. Then you would really lose him when he watches Dr's losing their licence.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by T.Maria: I asked him if Chronic Fatigue caused muscle twitching, buzzing/tingling in the back and head, muscle and joint pain.
Malaise, heart palpatations, weight loss, ear sensitivity numbness in the face..etc
Magnesium deficiency can cause lots of symptoms, including muscle twitching, palpitations and other heart abnormalities, sensitivity to light and sound.
The Lyme bacteria lives in our cells and uses up the magnesium, which our cells need for all enzyme processes.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I think it's important to have a GP close by, especially if your LLMD is far away.
My LLMD is pretty bad about getting back to me quickly, so I know for the emergency stuff I need someone else.
I managed to find a GREAT GP who, though he isn't entirely on board with my treatment, admits that he doesn't know everything!
Posts: 330 | From TN | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We all also have to learn a lot about how to manage symptoms that, in the past, might have taken us to the ER.
When we know more, we can take better care of ourselves and not have to go to doctors who are clueless.
Of course, for real emergencies, not everything is lyme and ER doctors do have a broad knowledge base, just not about lyme so don't expect them to have those answers.
We must educate ourselves as much as possible. We have to know what to do when . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My LLMD is quite far so I will need someone close. I will have to seek out other Lyme patients in the area to see where they go.
Thanks for all of the great advice.
Posts: 98 | From Ontario | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Good idea, find all your local and regional lyme support groups. Others who have blazed this trail can save you lots of time.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well whatever you do, if you have lyme and go to the er just be prepared to be treated like crap.
i told one doc in the er i had lyme one time and he said "don't ever mention that again in this hospital" and walked out. i was left sitting there for six bloody hours with heart palpitations, nausea, chest pain, etc.
the woman who walked down the hall and was put in a room next to me had tb. doctors and nurses were covering up and wearing masks and everything. did they do anything for me? hell no...
i never went back to that hospital.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Great point! I was thinking about that. What do you do if you have to go to the ER for med complications or any other condition. Do you tell them you are being treated for Lyme? What if they ask the name of the MD treating? The LLMD I have chosen is quite public but I would not want to put her in the middle any trouble.
I am very surprised about this whole thing. I thought of you had lyme you got treated for it. I didn't know there would be such issues.
Posts: 98 | From Ontario | Registered: Feb 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i don't tell any other doctor i have lyme. i did mention it to my eye doctor and was surprised that he said he knew about lyme and had other patients with it. i always knew he was special.
i told one ob/gyn and he dismissed me as a patient and told my husband i just needed attention. that caused a ton of problems for me. i dropped him immediately.
i've been to the er on numerous occasions and never mention lyme. if they try to give me prednizone or steroids i just tell them i am highly allergic to whatever drug they want to give me.
i know it may cause problems but either way i loose...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Wow. I am amazed at all of this. What an eye-opener.
My friend went to the ER 2-3 times with a severe headache. They finally called in an eye doctor because her eye pressure was so high. The eye doc ordered the Lyme test (just so happened that she went to a lyme conference a week prior).
Needless to say they sent my friend home and a few days later they called her home and told her to get to the hospital ASAP, the lyme test was positive.
She had lyme meningtis and almost lost her life.
Even with a positive test the neurologist laughed with disbelief but had to treat. She tested negative to the following 4 tests, therefore the infectious disease doc argued about her diagnosis so it would not have to be reported to the health unit.
I think there is something to be said about eye doctors.
Posts: 98 | From Ontario | Registered: Feb 2012
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posted
I grew up with my gp's daughter and knew him my whole life. Last timeI saw him I left crying and stormed out. I was told he was an "expert" on lyme and since my elisa test was negative I did not have it. He wanted to give me antidepressants so I ran out of there.
Neurologist told me lyme didn't exist in Tennessee. 4 er docs told me the same thing and that I was being "close-minded." Infectious disease doctor told me I didn't have enough bands and that two weeks of doxy would kill it even if I had a tick illness.
It is all very discouraging. I'm just thankful I didn't stop and did research and found people online. My heart aches for those out there who are suffering with no real clue.
Posts: 94 | From Tennessee/NY | Registered: Feb 2012
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The problems are so bad we have a gator pit to thrown stupid doctors in. Help yourself.
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