posted
he doesnt think i have lyme because i've never had a obvious red bullseye rash. i seem like im healthy and strong. -story of my life it seems(trying to convince ppl i dont feel well when i look good on the outside)
after i presented him with 3 pages of symptoms, unprovoked relentless anxiety, depression, fatigue,
orthostatic hypotension, headaches, bruxism, flashing wave in the corner of my eyes, tremors in my hand, extreme lower back pain, shooting pains, crying spells. etc.
diminished ability to concentrate, pmdd, not able to hold a job or stay in school. waxing and waning symptoms. very nonspecific if looked at one at a time, easy to dismissed.
too much caffeine, bad diet, dehydration, low blood sugar, pms, bipolar, add ,ahhh etc.
most of my days were spent in a room with my boyfriend cus hes the only one i could tolerate. i was agitated constantly. at anything, anyone. until i started antidepressants and antibiotics. i think it has to be lyme or lyme like that has effected my brain also.
thats just to name a few. all of which got better while i was on antibiotics. along with my hair, nails, and skin.
i think its all connected. i feel like i've never felt 'right'. this is the closest i've been!
the llmd said maybe im depressed because my dad died when i was 15. i am now 23. he was an alcoholic but i am smart and have much support from family and friends.
he also told me i should go to church and pray when i broke down crying in his office. i cant believe it. i guess it just shows you how even in this 'small' community of llmd's they may not all be as informed or willing to think outside the box.
my primary care who studied lyme for years and years and even got someone taken out of a psychiatric ward because he suspected lyme. the man is later became a journalist for nytimes!
his license was threatened and he stopped but decided to help me.
he clinically diagnosed me with what he thinks is chronic neurological lyme.
dr. r, the llmd and neurologist ordered me and lumbar mri of the spine and mri of the brain along with an emg. do you think this will be helpful in my case?
** moderator's note - edited to remove doctor's name **
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said: "he doesnt think i have lyme because i've never had a obvious red bullseye rash."
Most people do NOT get a rash. Every LLMD knows that.
Well, I'm stopping right there because you DID NOT see an ILADS-educated LLMD then. But the other things said to you are not appropriate at all.
I would NOT do those other tests. Cancel and find a real LLMD. If other tests are needed, the LLMD can guide those.
The MRI's may be of help but best if a LL orders and reviews. The EMG is an invasive test, needles into your muscles. Painful and probably not necessary.
** Above all be sure to AVOID a lumbar puncture (spinal tap). **
Now, this may or may not be lyme. But it sure sounds like it could be and a good LLMD can offer you the best assessment not just for lyme but for other tick-borne disease and other chronic stealth infections, as well.
I'm confused by the last 4 - 5 lines in your post. Not sure who you are talking about? All one and the same so called "LLMD" or someone else?
Check with your local lyme support group, post in "Seeking a Doctor" forum.
In the meantime, be sure to eat as clean of a diet as you can, getting good delicious nutrition and NO junk foods, no processed foods or artificial ingredients.
Especially, totally avoid even a trace of aspartame or MSG. Google for all the names they hide under.
Stevia (from a plant) is okay to put in your Green Tea. SweetLeaf and Trader Joe's are two good brands but avoid Truvia, it's got additives.
You might consider going gluten-free and dairy-free as that often helps tremendously. But DO see a real LLMD as soon as you can.
Good luck.
================================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
While the things he reported said about lyme are not true (rash, etc.), he does have a point about diet being important. I know it's hard when you don't feel well but it's vital to have the very best self-care that you can. Eat whole foods. Nourishment is our best foundation. -
[ 09-11-2010, 03:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I really don't think that doctor is an LLMD. My regular PCP said drivel like that to me. A REAL LLMD does not rely on a bullseye rash and is able to clinically diagnose Lyme based on symptoms supported by testing.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
very few neuros are worth ANY money. Neuros are notorious ANTI-LYME "its in your head" docs. Believe me...dxd MS for 17yrs before getting a proper LLMD & proper Lyme test.
Post in "seeking a doc" & get names of llmds.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm a bit confused. I caught the doctor's name when it was posted (before edited out for understandable reasons).
If this is the doctor whom I think, from what I can tell by a basic search, he is a good doctor. He's on the board of the LDA and has authored some excellent articles about the complexity of neuro-lyme, one being in the "Lyme Times" back several years ago.
He's quoted in other articles written by renowned ILADS LLMDs.
So, for someone of that stature to say the things posted, something seems to be off. No doctor who has written those articles and no board member of the LDA would say a rash is required. Nor would they have said those other things about "just depression" or about going to church.
I'm wondering if maybe it was not the same doctor but one with a similar name. There has to be some confusion unless the doctor has done a complete 180 degree turn which, given what he's written, is unlikely but would be so sad if that were to be the case.
Still, be sure to connect with your local lyme support group. Compare notes. That is where you can find a good LLMD and avoid those who are not. -
[ 09-11-2010, 04:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I need a full name and address, as well as phone number of this doctor to confirm who he is and whether he's connected to the Lyme Community .
PM me with that info and I'll tell you everything you need to know.
-------------------- 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.
quote:Originally posted by METALLlC BLUE: I need a full name and address, as well as phone number of this doctor to confirm who he is and whether he's connected to the Lyme Community .
PM me with that info and I'll tell you everything you need to know.
Just reiterating that this info needs to be sent via PM because doctor's names and contact information are not allowed on the board.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
i know, i was devastated. i dont want lyme by any means, but my life finally made sense. and to go to an LLMD thinking he'll suggest aggressive treatment, nutritional therapy, maybe a way to get a positive result. instead he takes apart my symptoms and says, skin rashes---go to a dermatologist, depression---go to a psychiatrist, lower back pain---try physical therapy, maybe a bulging disk.
i did get his name from this site, he does work with igenex and lyme literate labs. i dont know what to think.
Posts: 62 | From Perth Amboy NJ | Registered: Jun 2010
| IP: Logged |
posted
Sorry you had this experience. You just gotta move on and blow them off. I had an endocrinologist tell me to stop burning the candles at both ends, eat right(I weighted 98 lbs and am 5'6") and go to church on Sunday. With all your symptoms you need a western blot thru Igenex. I never had a rash. Geez-----that Dr is exactly why most of us end up seeing 40+ Dr's before we get help and we have to do all the research and put out the effort/energy we don't have. Was TMI I know just hate those kind of idiots.
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
posted
I have seen this doctor and while I appreciate his help, I would recommend seeing an LLMD. I had communicated with a few others who also saw this doctor (mostly because he takes insurance) and were not happy and they moved on. In my case, I showed him my positive elisa and blot thru labcorp (was initially treated by my primary care doctor and went to the doctor in question since he is/was a member of ILADS). He retested me and told me I didn't have lyme though I had a positive elisa and equivocal blot this time. I asked him if the 100 mg of doxy I received when I treated the first time was enough and he said yes it was (keep in mind, I don't think this was a recent infection so this dosage did absolutely nothing).
I get the feeling he is turning away alot of people as he is either tired of fighting the insurance companies or too many people are going to see him since he takes insurance. Just my thoughts.
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
posted
I also saw this doctor before moving to a great llmd and he told me I wasn't that sick. The next week I was having seizures.
Run away fast and get a good doctor. PM me if you need the name of someone.
Hope this helps
Posts: 298 | From usa | Registered: Aug 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Metallic Blue collects patients' critiques - to catalogue both good and bad experiences.
For those with important comments to help others make their decisions, please be sure to communicate with him. From his post above: -------------------------------
I need a full name and address, as well as phone number of this doctor to confirm who he is and whether he's connected to the Lyme Community .
PM [him] with that info and [he'll] tell you everything you need to know.
-------------------- 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
If you got the name from this site, be sure to PM the person who sent you the name and tell that person that he's NOT an LLMD. Tell them about your experience. I hate to hear that someone is passing out a name like that.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
quote:Originally posted by lotus26: he doesnt think i have lyme because i've never had a obvious red bullseye rash.
It is my understanding most don't get the bullseye rash. I didn't get one until 12 years after being infected.
Are you orthostatic HAs daily? I think you may have a CSF leak. Have you ever had a lumbar puncture to test your CSF pressure? If you have daily HAs and have low CSF pressure, then you have an unidentified CSF leak. I have one. My theory is the acidic toxins from the lyme disease eroded the dura membrane, eventually making a hole, through which the CSF fluid leaks out. Once you gave a CSF leak, your brain loses its cushion from the skull. So it falls on the skull, putting pressure on the pressure points in the dura membrane. One leaker refers to it as "My brain is banging against my skull." He is correct. If your HAs are orthostatic, then they must not be too old. How long ago did you start having them? I have presented my theory about the lyme toxins eroding my dura membrane making the hole to my former LLMD. She agrees. I have also presented my theory to my connective tissue disorder geneticist, who also agrees.
You also say you have too much caffeine. Typically, leakers drink a lot of caffeine because it helps their HAs. Caffeine is known to stimulate CSF production in the brain.
I agree with your good Dr., you could have neuro lyme.
Warning, there is only one good neurosurgeon who knows how to correctly evaluate for a CSF leak. Where do you live? Hope this helps. Posts: 20 | From Washington, DC | Registered: Jun 2003
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Sorry this happened to you. You just have to try again, don't give up. Sounds like a real weirdo if ever there was one.
There is a thread that comes up now and again with outrageous things doctors have said to us. It should be turned into a book as it is hilarious although pitiful.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
When you hear no rash equals no lyme, that's the cue to bolt for the door...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ok, we "are" talking about the same doctor Keebler. This is very bad news. I need to confirm from multiple sources what is going on. The review a few of you have given here is entirely reversed to what this physician has done for many years.
Obviously I believe you, but if I can find out why -- that will be important.
[ 09-13-2010, 10:18 AM: Message edited by: METALLlC BLUE ]
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Anyone who has seen this doctor, please PM me with a patient report. Explain what your experience was if you'd be so kind. The notes you give me with remain anonymous. I will update this information with other individuals who hold lists.
-------------------- 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.
quote:Originally posted by lotus26: he doesnt think i have lyme because i've never had a obvious red bullseye rash.
It is my understanding most don't get the bullseye rash. I didn't get one until 12 years after being infected.
Are you orthostatic HAs daily? I think you may have a CSF leak. Have you ever had a lumbar puncture to test your CSF pressure? If you have daily HAs and have low CSF pressure, then you have an unidentified CSF leak. I have one. My theory is the acidic toxins from the lyme disease eroded the dura membrane, eventually making a hole, through which the CSF fluid leaks out. Once you gave a CSF leak, your brain loses its cushion from the skull. So it falls on the skull, putting pressure on the pressure points in the dura membrane. One leaker refers to it as "My brain is banging against my skull." He is correct. If your HAs are orthostatic, then they must not be too old. How long ago did you start having them? I have presented my theory about the lyme toxins eroding my dura membrane making the hole to my former LLMD. She agrees. I have also presented my theory to my connective tissue disorder geneticist, who also agrees.
You also say you have too much caffeine. Typically, leakers drink a lot of caffeine because it helps their HAs. Caffeine is known to stimulate CSF production in the brain.
I agree with your good Dr., you could have neuro lyme.
Warning, there is only one good neurosurgeon who knows how to correctly evaluate for a CSF leak. Where do you live? Hope this helps.
What is HAs? can you post any links to this CSF leak thing? can you pm my the name of that neurosurgeon? Can they really check the CSF pressure by a lumbar puncture?
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Infection can mess up CSF pressure. Always first consult an ILADS-educated LLMD before agreeing to a lumbar puncture. Since lyme changes so much about all this, a LLMD is best for guidance.
Treating infection can help many symptoms improve.
========================
Please, those with reviews, do contact Metallic Blue. With such a drastic change from a doctor, it would be good to try to figure out why and prevent others from being kicked out the door when they need good care.
While it's true that not everything is lyme for a supposed lyme doctor to declare a bulls eye rash a requirement is troubling. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Who is this doctor? I have still not received a PM? Let me know.
-------------------- 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.
This LLMD sounds retarded. Please, find a new another LLMD in your area for another examination. Maybe someone on here close to you can PM you some names?
You already know the answer. You're confident you have Lyme, and I also believe you.
I repeatedly tell people one thing about my experience with Lyme to always keep in mind. I had doctor after doctor tell me nothing was wrong with me, but I had all the symptoms to prove them wrong. NEVER IGNORE YOUR OWN JUDGEMENT AND KNOWLEDGE.
You just need to find someone who has your back. It's OK, most of us have had to see MANY doctors before finding a diagnosis and/or getting the correct treatment.
Posts: 829 | From MD | Registered: Dec 2009
| IP: Logged |
posted
Everyone who maintains a list here needs to know who this doctor is.
I would appreciate the information also.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I know who it is, and I'm not at all surprised. I wouldn't personally recommend him even before I saw this post, but...he is on the list.
The catch is, on my list he has 10 negative reviews and maybe one or two positives.
Dr. R in NJ, a Neurologist. That should give away the hint.
If anyone would like to give me a proper review of their experience with Dr. R (The neurologist) in NJ, please PM me. All reviews are anonymous. The review allows patients who come to me or other people in the future looking for an LLMD to be able to read about the experience that other patients had.
-------------------- 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.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
Printer-friendly view of this topic