posted
The other day when I went to my primary to get my ovary checked out, and told him what meds i was taking, he said to me:
"These lyme docs are just makin money. What you are taking goes against current medical advice. You are doing yourself a great disservice. You need to get to a Neurologist."
This really made me consider that maybe I dont have lyme at all. Maybe i have some other horrible neuro disease, even though i asked my llmd and he told me no.
Anyone ever have this experience?
If so did u go back to that doc once u were better to tell them??
Posts: 319 | From nj | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I never stepped foot into my gyno's office for much the same scenario. He had considered me a hypochondriac (one who was always sick but never asked for medication) for 20 years. I've never been back. I needed people in my court.
No, I never told him I was well. He never believed I was sick.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I have been told that many times by different specialists. I have learned to just let it roll off my shoulders and take it with a grain of salt.
They can think what they want and have their opinions but I know that I have Lyme and I know that my LLMD has had much success in getting people just like me better. I have no other options than to trust that I am on the right path in treating this disease.
I am not better yet but when I do get better I will not hesitate to tell them that I got better.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
You have Lyme. Treat it.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I would bet almost every one of us has had a similar experience.
I cancelled my recent appt with my PCP.
I'm getting much better care from my LLMD anyway.
I do plan to go see him though, when I am mostly recovered, so I can report to him how the treatment worked!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I would expect that reponse from other doctors. I might even welcome them to help me figure out what is wrong if indeed it is not lyme. I think it is good to not put your eggs all in one basket
I have had a complete neurologic work up and other specialists so I feel that everything is ruled out. (that includes ID and rheumatology)
Posts: 207 | From NH | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When you finally are able to read some of the books and articles by ILADS LLMDs and authors, you will be able to determine just who has done their homework. It's sure not your regular doctor.
I've never gone back to doctors who are ignorant or arogant. Oh, I used to, thinking they'd finally read more but they never would. So, I've learned. Stick with doctors who have done their homework.
Lyme is one of the most toxic and complex infections known to man. Add to that the numerous combinations of coinfections. It's sub-specialty.
You've read all about the IDSA, right?
Are you asking to learn more or have you gotten basic links to explain the political problems with lyme diagnosis? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'd love to learn more, keebler. I understand the basics, but don't udnerstand how my primary, someone who went to medical school, could see me and my symptoms and assume it has to be a neurological problem like ms and rule out lyme completely.
When asked, he won't offer any explanation of what I could have, just says to go to a neuro.
My igenx lyme came back positive and I developed these symptoms all of a sudden after working at a camp and finding a tick in my bed. I guess he would say the lab is a big conspiracy (igenx).
I've been seen by a dr g in NJ, a rhuemologist, who agreed I did have lyme but didnt think i had coinfections due to my negative coinfection tests and didn't think after 6 weeks I was still infected even though i still had symptoms.
Another lyme (dr S in nj) doc i went to also said I had BBB without a doubt.
My current lyme doc says he is quite conident he will get me well. (he is the one who has the lyme blog)
Its just scary to know that two doctors could be the complete opposite in this.
I mean if i had ms or something, i would have had symptoms before and this happened within weeks of working at the camp.
I guess there is always doubt that maybe i have some severe neuro problem like a tumor or ms, and that i am fooling myself even though when i asked my llmd, he said he is positive this is what i have and that i dont have these other diseases..
Posts: 319 | From nj | Registered: Jul 2008
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posted
I had a positive Lyme test (from IgeneX) and the Infectious Disease Doc told me it was a quack lab, and i shouldnt trust anything i read online about Lyme Disease. He said "chronic fatigue syndrome with unusual neurological symptoms." Translation= Neuro Lyme Disease. His action..told me to go to the Mayo Clinic and *start* in Neurology.
If you have had a clinical diagnosis of lyme, you may find that a neurologist will support the diagnosis not dispute it. But, they won't say it out loud. If you have abnormal EEG's, like i did, it's not a mysterious unknown seizure disorder, it's Lyme.
If it makes you feel better, get the tests, take the Neurologist's interpretation with a large grain of salt. Question them, not yourself. You are the one who knows what's going on.
And i dropped "Under Our Skin" off to my PCP about a month ago, and asked her to watch it and call me once she had so i could go get it. I was sick and tired of her saying, well are'nt ya better yet? She's seen me sick for years, and 7 mos. into treatment, i still gotta long way to go. THEY just dont know what Lyme really is.
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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posted
I will definately get those books too. Posts: 319 | From nj | Registered: Jul 2008
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massman
Unregistered
posted
I was taught by a very sharp NP - Nurse Practitioner - at a continuing ed seminar that lyme has stages.
In her opinion MS is late stage lyme. Since lyme can + does express itself differently in many people, some other stages can include FM, CFS, RA, AS and more.
IMO to assume that lyme can always be treated with up to 4 weeks of antibiotics is idiotic. Many docs often think they are right and others are wrong.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The book, "Cure Unknown" will shed light on the situation for you. It is written by a Science Journalist whose family contracted lyme disease. She details some of the politics, science and the personal side of Lyme Disease. It is a wonderful book.
MS, fibromyalgia and Chronic Fatigue Syndrome are often diagnosed instead of lyme disease when the underlying cause for some people is actually lyme disease.
My State is endemic for Lyme Disease according to the CDC and yet almost every doctor here emphatically states that there is no Lyme Disease here. Instead we have lots of MS, fibromyalgia and Chronic Fatigue Syndrome. If you won't accept that it exists, you won't find it.
Despite many studies to the contrary, the IDSA denies the existence of persistent infection.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
been there, done that, got the t-shirt.
i bet each one of us has been to perhaps countless doctors trying to get a diagnosis.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Terry, thats interesting. I will check that book as well.
Posts: 319 | From nj | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My GP said "we don't really have Lyme Disease in Mississippi". How many have heard that??? HA!
I go to him 2 or 3x a year just to get Xanax. He seems interested in my lyme treatment; but I can tell he is not sure about it. He is slightly curious. If he ask I talk about it, if not I just get my Xanax and go about my business. He is not a bad person, he just doesn't know. I still don't think that is a good excuse. If you are a physician it is your duty to educate yourself.
I look forward to the day I can walk in his office and tell him I am cured by my LLMD.
There is a rheumy that I would love to have words with and intend on sending her a certified letter about how she ignored my symptoms and called it Fibromyalgia and never mentioned the words Lyme Disease to me. If FM is your specialty, and the symptoms are the same as LD, then there's no excuse for ignoring patients and causing long term suffering to them. Yes, I am angry at her!!!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I had just gotten home from work---very tired and hurting very much.. I read this post and was furious!!! I was typing up a storm and then lost the text...probably just as well (:...sometimes the Lord knows best.
I took a warm bath...still hurting but have at least calmed down a little.. so the short of it...
The nerve of your Dr telling you LLMD's are just taking our money...GIVE ME A BREAK...WHAT do they think they are doing..I spent more money (as Im sure most here have) on tests, drugs and YEARS of suffering etc to just have me be told...ghee I dont know what you have...I guess since we cant find anything we'll say you have fibro or CFS.
It finally took me almost unable to function until I MYSELF FINALLY figured out what I had.. I DID the research...I SEEKED OUT my llmd I TOOK CONTROL OF MY HEALTH...
IF I had not gone the extra mile I would still be seeing my family Dr who would STILL be giving me pills for fibro.
PLEASE, listen to yourself. You HAVE a positive test. unfortuntally YOU DO HAVE LYME...most probably co-inections as well.
Dont get me wrong I am not trying to bash you...I just want you to not try to second guess yourself by listening to a Dr who is obviously uneducated on the matter and/or doesn't care to listen or learn.
IF the LLMDs are just trying to get our money then WHY would they risk fear EVERYDAY of losing their licenses and being "dicredited" by their peers.???????? Its a no brainer...THEY GET IT.
I know my Dr cares (his wife has had lyme). Their waiting lists are long because there are so many people that "dont" have lyme seeking help.
My LLMD has also practiced for years and I feel quite sure he would live quite well (financially) the rest of his life if he chose to retire. He makes the choice to still practice to try to help us.
This disease is going to rob you (us) of so many things PLEASE DO NOT waste your time with those who just dont and refuse to understand.
Take care of yourself....no one else will.
Good luck and God BLess,
Posts: 423 | From Virginia | Registered: Nov 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some basics: ---------------
You mentioned MS. MS is very often Lyme that was ignored.
Lyme Disease: Two Standards of Care - by LORRAINE JOHNSON, JD (revised 2005)
=========================
* This explains WHY you need an LLMD or LL ND (naturopathic doctor) to guide your treatment protocol. One who is ILADS-educated (in knowing all the science) even if they have their own approach for an individualized plan:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
While I support the use of very specific supplements, I am coming to respect this author who deals mostly with the first line of defense: treat the infection(s). He has orchestrated success for many.
This blog should also to be considered, as you compare and contrast approaches. Supplements are not addressed here but you might read some of the blog entries by a doctor who takes lyme seriously and gets results by doing so. His methods differ from a "complementary" approach nevertheless, it's important to study what he has to say.
Main point: tick-borne infections require serious and complete attention. This is more of a journal of individual accounts rather than a recipe but there are still many solid details here: ------------
DVD is $35. and worth every penny. It explains a lot. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
laurisabelle,
My entire family has Lyme disease, including my three very young children. It is real. My children have been in treatment for over a year and are a hundred times better than they were before treatment.
I treated them AGAINST the advice of my local pediatrician who cannot quite fathom how they could be so sick from Lyme disease.
The one thing that I have learned in this battle is that most doctors are completely IGNORANT about Lyme. They may talk confidently, but they are still wrong. They have not taken the time to do the research that I have done. They have not had their 4 year old walk into their bedroom in the morning, every morning, and curl up into a ball on the floor whimpering that his head hurt and he was angry.
Once you do your reading and watch UOS, you will see what I am talking about. It is really quite hard to believe that in this country we have such ignorance. I have lost faith in mainstream medicine. I don't believe doctors anymore unless they provide me with research to back up what they say. I always do my own medical research about everything now.
You will also see that LLMD's all treat differently. That is because there are many ways to treat Lyme disease successfully. There are also good LLMD's and bad ones.
For an LLMD to tell you that you have Lyme but no coinfections b/c of the testing, is wrong in my opinion. If you read Dr. Burrescano's treatment guidelines, he says that patients with chronic lyme UNIVERSALLY have coinfections. They are always there. My husband went to Dr. G in NJ once and then moved on b/c she failed to clinically diagnose or treat two coinfections, which later tested positive! We wasted 3 months with her.
My husband went to 5 LLMD's before we found the right fit.
When you think about it, how absurd is it that mainstream docs think of MS or ALS or Lupus or some other rare neuro disease before considering Lyme? Lyme is much more common!! Why not consider that first?
Don't second guess yourself based on your GYNO. I would find another one. My GYNO actually believes me and called me for advice when her neice in NY had a mysterious pain in her back and severe headaches that no one could diagnose. I suggested an Igenex test and voila, Lyme and Ehrlichiosis came up positive. This was after numerous visits to specialists who just couldn't manage to figure it out. This is AMAZING to me.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Oh- I just saw you did change LLMD's and are with the lymeblog one...he sounds very good...I think you are in good hands!
Good luck to you!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
make sure you dont share your doctors name if you can help it...
Posts: 3905 | From USA | Registered: May 2007
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by laurisabelle222: The other day when I went to my primary to get my ovary checked out, and told him what meds i was taking, he said to me:
"These lyme docs are just makin money. What you are taking goes against current medical advice. You are doing yourself a great disservice. You need to get to a Neurologist."
This really made me consider that maybe I dont have lyme at all. Maybe i have some other horrible neuro disease, even though i asked my llmd and he told me no.
Anyone ever have this experience?
If so did u go back to that doc once u were better to tell them??
Not to be rude, I'm sure your primary doctor cares about you and has your best interests at heart, but he's terribly ignorant regarding lyme disease. He should be ashamed of himself dissing LLMD's who put their careers on the line every day working hard to help people who are suffering with this gawd awful disease.
If he really wanted to help you he ought to do some research on this disease before passing judgment on his fellow doctors like that. So, he has something against LLMD's making money? I hope he applies the same standards to himself as he applies to LLMD's and doesn't believe in making money.
You are your own best advocate when it comes to your health. The mainline medical establishment is not going to be much help to you when it comes to Lyme disease. There are many reasons for this--politics being one of them
Here's a couple links that I think explains the controversy of why the medical establishment is not open to the truth of this disease which has become a real epidemic in our country.
Many GP's have done a grave diservice by minimizing this disease and criticizing the LLMD's who work hard to help us get better. These doctors should be sued for malpractice and lose their licenses as far as I'm concerned.
After 15 years of living with this disease and having many doctors telling me there's nothing wrong with me, today I'm paying a horrific price for their ignorance. That's fifteen years of my health that I will never get back again.
Yes, I'm finally getting better on a natural protocol I'm on, but I should have never had to wait this long before I finally got the appropriate treatments.
Your health is your responsibility. Find a reputable LLMD and then let him/her determine if you have lyme disease or not. The sooner you treat this disease, the better off you'll be. The longer you put it off, be prepared for a life of hell on earth.
Take it from the thousands of people on the various lyme forums who know better and have learned the hard way.
God bless and I pray your eyes will be open to the truth for your own health's sake and the sake of your family.
posted
All the hard work of people on this forum and people who have written books on Lyme disease have saved my son from horrible needless suffering.
His primary care physician who told me he knew about Lyme disease and has been treating it for 20 yrs!! did not even think to test for it with many strange medical problems showing up in an otherwise healthy ( and had been for 11 years leading up to this) kid.
I heard the old song and dance about how this could not be Lyme and was probably Lupus or J. Rheumatoid Arthritis, I had to insist on the W.B.
And guess what? CDC positive ( I guess we were lucky on that ).
Then I asked him about co-infections (again thanks to all these wonderful people that started to educate me!!)
No we don't have to worry about them, and then when I made up my mind and saw our LLMD we did test for them and guess what??
Erlichiosis, I did fax his doctor a copy of the positive test and guess what?
Now all of the sudden it was imperative that we start treatment for the co-infection he told me he did not have!!
I shudder to think of where we would be now if I would have continued to second guess myself.
Posts: 448 | From minnesota | Registered: Feb 2010
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WildCondor
Unregistered
posted
Make him/her watch Under Our Skin and Under the 8 Ball, then fire him/her and tell him/her he/she has no business being in medicine with such a closed mind.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Your primary is a human being. Human beings have opinions that are based on limited information. We never will know "everything" about everything, and this is one issue that point was confirmed.
I've seen over 150 doctors. Guess how many supported my diagnose of Lyme? 4. Guess how many were willing to diagnose it, 3. Guess how many actually knew enough to treat it thoroughly. 1
And I still didn't get well, but I did see improvements in some areas.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
it is hard to find docs that will listen to the Lyme thing.
I work in NYC where there are tons of doctors-but it took me a long time to find my current team.
I now have a neuro, and endo, and an LLMD who are all aware I have Lyme and are all supportive of the diagnosis. I get other tests done, like MRIs, bloodwork, EEGs, to monitor my systems.
I got very lucky with my Neuro-she is actually a DO (Doctor of Osteopathy) who believes in treating the whole body, so she is very open. She likes to run tests to make sure my nervous system doesn't develop lesions or the like, but she is very supportive. As is my new endo (thank god!).
I realize I am very lucky to have this team at all-although it did take me 5 years in the biggest city in the country and countless copays to useless doctors who talked down to me to find them.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You have been given excellent resources here to better educate yourself. And that's good because it comes down to education.
If your basic doctors are not willing to become educated in this area, you certainly have to do so - enough to find (or stick with) a doctor with the skill, experience and knowledge to offer you the very best possible chance.
And, even then, there is no guarantee. So you have to be on top of your game with - every - single - element - regarding self-care and by avoiding the stress of continuing to go to doctors who are ignorant of the issue and expecting them to change or offer you any kind of help.
It's not your job to convince them or to teach them. It's great if you can share an important article but 99% of the time, they will not even take it from your hands. If they do, it's just put in your medical file and no one will read it.
You have to focus your attention on what is going to be effective for you. We don't have time to spend on ignorant doctors. All our attention must be focused on working with the smart ones - and taking excellent care of ourselves which, when so sick, is just so very much work that we are up against all the odds.
Decisions about every single ounce of energy we have must be carefully considered. Get on with the serious meat of this and forget stuff that trips you up.
If it comes down to "it's not fair" or "this just is not right" - oh, that's all so very true. And there will be time LATER for activism or by those who now have the energy.
But your body does not have time to "go there" right now it has more important work to do every single minute. Don't waste it on stuff or people that drag you away from the task at hand: educating yourself; taking care of yourself.
Lyme is a race against time and energy. If we want to win, we have to use all our resources extremely wisely. That includes emotional investment as well as energy and time.
If you must see a regular doctor for a certain matter and you have no other choice to find one in that area who undertands lyme + co, just keep quiet, get done what you need to get done but leave lyme out of it. Otherwise, they will have stolen some things very valuable from you: time, energy, hope. Put all that where it most matters.
If you start thinking that if you only said the right things, had the right article, THEN your doctor would listen . . . well, listen . . . we've all been there, done that. Just say "no" for your own well-being.
Pay Attention: Metallic Blue's numbers are spot on:
". . . [saw] over 150 doctors.
Guess how many supported my diagnose of Lyme? 4.
Guess how many were willing to diagnose it, 3.
Guess how many actually knew enough to treat it thoroughly. 1 "
ONE.
Go with the ONE who has the skill, expertise, knowledge - and willingness (plus actual courage, desire and drive) - to be working as a LL doctor so that we all might just have a chance at life.
The rest is up to us. We still have to do the work. But, as you have the luxury of actually having a good LL doctor, you are indeed among the very few with such opportunity. Put that to your very best advantage.
Don't let anyone distract you from doing the best you can to achieve your goal. -
[ 03-09-2010, 01:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
If there is any conspiracy, it would be on the side of the IDSA and insurance companies, not on the side of ILADs, LLMDs and Igenex.
I tend to give people the benefit of the doubt and assume that they are ignorant and self-interested, but not so nefarious or well-organized as to be conspiring against us.
Even if Igenex were a conspiracy, they did not conspire to put an infected tick in your bed at camp. Lyme disease is out there, ticks are carrying it, and people get bit by the ticks all the time.
It really isn't a big stretch to believe that the bacteria are being passed to people, especially when you, like me, had your first symptoms within a few weeks of an encounter with a tick.
When I first went to my GP, about 2 months after my tick bite, and told her I was having symptoms that had first occurred 10 days after I got bitten, she laughed and told me I must have caught a virus, and to go home and take Advil.
She was open minded enough to listen to me on two later visits, when I gave her some research articles about Lyme. She agreed to run a Western Blot and to give me 3 months of antibiotics even though the test came back negative from Quest.
By the third visit, she had stopped laughing, and made a note of the three Lyme related books I brought in to show her.
I believe she is a good doctor, open minded, listens to her patients, and that her main concern is for my well being.
Nevertheless, in spite of her eventual assistance, it was clear she knew next to nothing about Lyme, and did not have the knowledge or experience to help me.
She was still skeptical that I had Lyme, even though it started responding to her antibiotics.
She told me that Lyme is extremely rare in Indiana. Nevertheless, I showed her maps of reported infections in people and dogs, and it is in our county and surrounding ones, and the one where I got bitten.
I have since found several people with Lyme in my own immediate region, and we are starting a support group. I have heard of LOTS of people diagnosed with CFS, FM, RA, MS, etc., and people who are taken for hypochondriacs.
I think it is everywhere, and quite common, and most patients and doctors don't know anything about it.
My GP tried to warn me against the dangers of long term antibiotics and the risks of going to a suspect, unorthodox doctor, out of state, who didn't take insurance.
A group of doctors who face frequent investigations and hostility from insurance companies and state medical boards certainly looks suspicious, to those who don't understand how things got that way. (Read Cure Unknown for the best explanation.)
In fact, the LLMDs are the courageous few who are willing to keep treating us in the face of significant risk and opposition for them, frequently because their own lives have been touched by Lyme.
I diagnosed myself with Lyme disease within three months of my tick bite. When I get sick, I usually understand why, but this time I was very uncertain about whether I was right.
Nevertheless, despite lack of a rash or a positive blood test, I got bit by a tick and then began having symptoms of tick-borne disease within 10 days, and they have not gone away but have reacted to antibiotics.
Isn't it FAR more likely that I have an infection due to the tick bite than that I just happened to develop rheumatoid arthritis, sciatica, chronic fatigue syndrome, and perimenopause all at once on that exact day?
Don't let a doctor who is uneducated about Lyme convince you to doubt what you already know.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Just how frustrating and another example of how some "doctors" can cause more harm then good.
I have gotten to the point where if I don't need to tell my gyno or whatever doctor I need to see that I am being treated for lyme then I don't.
I don't have it in me to argue with another human being about whether or not I should still be on abx's and whether or not late stage/chronic lyme exists.
I trust in my LLMD and myself and know I am on the right path - I am getting better. If my PCP or Gyno or whoever does not like it or disagrees with it then whatever..I don't need their approval.
I am fortunate to have a Neurologist and Neurosurgeon who understands lyme and atually were the ones to recommed abx. tx after a failed spinal cord surgery did nothing but make me worse.. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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quote:Maybe i have some other horrible neuro disease, even though i asked my llmd and he told me no.[/QB]
Not to doubt what your llmd said, but how can he say that? I wish my wife's llmd says that but he only confirms that she has Lyme and co-infections, and that anything beyond that is unknown.
Posts: 822 | From midwest | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Infection is often the cause of many "horrible neuro diseases"
Treat infection. Many things may clear and those that might not, well, then, you just go from there.
laurisabelle there is a ton of information on what lyme can do if left untreated. You know you have lyme. Treat it. That's the first step for you.
Your LLMD is likely drawing on his knowledge and experience regarding your symptoms, history and clinical assessment and how all that makes sense regarding the pattern of the spirochete.
Lyme is one of the most toxic infections there is and that can do a lot of damage. If you get this treated in time, adequately so, and you cover all the bases, hopefully, you will improve.
If you don't treat it, that will be another whole picture. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow! I feel so lucky. My family Doc. after working tirelessly admitted he couldn't come up with the answer. He sent me to an infectious disease specialist who immediatly diagnosed lyme and shared the info with my m.d. who agreed and the llmd I now have and my m.d. share all of my reports, and progress. Jasek
Posts: 161 | From midwest | Registered: Jul 2007
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
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NJ08534USA http://www.lymenet.org/
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