-Lyme cannot cause heart palpitations, those are 100% from anxiety, which is from lyme.
-Flagyl is bad for you (forgot what exactly he said but basically if you fail on flagyl you cannot get well on anything and it makes you MORE succeptible to C-Diff!)
-That there is 'no such thing' as a cyst form of lyme. The lyme can hide but if you hit it hard with antibiotics every day, they cannot hide. They have to come out eventually. He treats me with Doxy and Ziphro every day for this
-If the Ziphro doesn't make me herx harder soon; and then bactrim doesn't work, we'll "Have to look for other possible causes and it isn't lyme" (this despite two positive tests on even bad testing I told him) and he replies with "Well there are false positives and false negatives, there is no sure way to know if it is Lyme disease" ---this even though the symptoms would suggest it and I've had positive tests.
-He admittingly said that the healing process takes time...... yet in almost the same breath he spoke about wanting to change up my treatments and such or search for other possible causes (Neuromuscular Diseases or some type of myalgia he said) if something doesn't happen as far as a herx reaction because "I don't want to be on antibiotics forever" he said. (No, just until I get well)
-After saying lyme can't cause heart palps or heart jumps..... which it has to because my heart never did that before I got lyme disease; he told me about a guy around my age who was 26 who was in much worse shape then me... why was he in worse shape then me? Because lyme attacked his heart my doctor said. Hm. Interesting. It can't cause palps but it can attack the heart.
-Lyme can't cause air hunger or herxing can't either. That is from anxiety.
-Supplements aren't THAT important outside of fish oil and probiotics.
-He gave me some BS about "picturing yourself as a well person" is part of the treatment.... and I laughed at him and said, uh no... antbiotics are. He tried to say that the pain was from inactivity and depression, and that anyone who'd been inactive for as long as most lyme patients wouldn't know whether pain was from that or from the lyme, there's no way to tell he said.
-To top it all off, from me asking a lot of questions he told me I was an anxious person and that "I'm going to buy myself a heart attack" if I don't treat my anxiety with Paxil or Lexapro...... that even if we "get rid of the lyme I'll have a heart attack in my 30's". (Real nice bedside manner).
I so badly want to know if anyone else has had this guy in streetsboro, ohio to know if he is a moron to everyone like he was and has been to me.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Clint,
I would find another doctor. Did you consider seeing the LLMD in PA that I pm'd you about? He uses Flagyl, and changes antibiotics as needed. You have to see him every 30 days as he requires blood work too before he will write another script. Good news is that he takes insurance! I paid my $35 co-pay and that was it.
There is another good LLMD in WI that we took our son to, read a lot of good reviews on him too. You have to see in every 3 months. He is very good.
Let me know if you need their info again, one of the doc's you can usually get into see him in about 2-2.5 weeks.
I think you need to see another doc, is your's an LLMD?? He doesn't seem to be.
I would love to hear who this LLMD is who takes insurance!
My pm box does not work and I cannot access it, so are you able to e-mail me at [email protected]?
Thanks!
Clint- I agree with the others... move on...just b/c they call themselves an LLMD doesn't mean they are good! They may be able to cure some but you want one that has a better success rate!
posted
There's no one in the Central Ohio or Ohio at all who is highly reccomended. Everyone has had a different/bad experience with someone it seems like. I mean, he got them well; that means he should get me well.... I was so excited until meeting with him, and I have twice. He just rubs me the wrong way. He's arrogant.
posted
Could you please e-mail me the name and number of the LLMD in PA please.
Posts: 4 | From Ulster County NY | Registered: May 2009
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Agree, find another doctor. Dr. C in PA is superb!
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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tickbattler
Unregistered
posted
Clint - just to give you some perspective...my hubby in on his 5th LLMD in 2 years...but we are finally happy now!! We had problems with LLMD's not treating the coinfections and causing my hubby to stop improving.
When an LLMD says stuff like what he told you, he clearly is not up on the latest info! It's hard when you research yourself (as I do every day), because you tend to expect more from your LLMD and know when they are giving you a load of you know what!
Many people switch LLMD's until they find the right fit.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Clint wrote: I mean, he got them well; that means he should get me well....
I wish that were true. A particular protocol may work for a subset of patients but not for others. This is why we need doctor's who have a broad array of tools.
From what I've seen here most ILADS educated LLMD's have a good grasp on the reality of lyme disease and a range of treatments.
What about co-infections?? Did he even mention babesia in conjunction with air hunger?
The fact that he doesn't know about cysts or at least doesn't admit that they exist means that he probably is not ILADS educated. Is he a member of ILADS? Is he new to treating lyme?
Please look for an ILADS educated LLMD. Check with METALLIC BLUE if you haven't already. He has patient feedback for a lot of LLMD's. E-mail: [email protected]
There are some really good LLMD's out there. You may have to travel but it's worth it. Hang in there and keep looking.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
NO LLMD would ever say 'maybe you don't have Lyme at all" if you had a few POSITIVE Lyme tests... and if they did... I would believe them NOT to be LLMDs. Plain and simple.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Yes, herxes are relative to how sick you are. My daughter was much less ill than I was and she went to a water park with her friends during a herx.
Mine definitely diminished as I got better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Woahhh clint... I'm pretty sure you must be talking about Dr. K... I PMed you this. he's not an actual LLMD. I saw him for almost a year and he lied his gludius maximus (can't cuss on here right?) off the entire time, told me he had training and was going to train with ILADS doctors but never did and now they've turned him down since he's full of crap. He just milks patients for money, he doesn't have any clue what he's doing. Get out of there and get out fast he's an idiot and needs to be punished for what he's done to people. ooh and be sure and rate him on www.ratemds.com He let one patient in his town there die from what was clearly lyme and I know of multiple others he BSed around and nearly killed. Me being one of them.
I won't even tell you the stuff he said to me, it sounded a lot like "quack quack quack" someone needs to take an elephant gun to that duck.
Posts: 499 | From Indiana | Registered: Oct 2007
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I have talked to you before on other sites. I am from the Youngstown, OH area.
I see a Dr S in PA. He also takes insurance. But he only requires you to go once every 3 months. He doesn't do IV treatments though.
My mom saw the doctor you are talking about I think? Dr K? She saw him once. He wanted to put her on IV's but she is so sick that she herxed big time on very low dosage of doxy. So the IV might have killed her. She is now seeing my LLMD.
I didn't really like him anyways! Not surprised he said those things to you. He told us that he didn't really believe in chronic lyme. He only treats cause people get better. What??
Oh and by the way.. I don't really herx much either. I take 600mg of doxy and just started 1500mg of biaxin. I just notice mild increase in symptoms. Nothing like I have heard others describe though!
Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
I don't know much about Flagyl. Have never taken it. Hopefully someone else does!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
If he tells me (I'm 26) that I'm a heart attack risk and tells me that although I've had 2 positive lyme tests that it could be something else.... should I disregard each of those things??
posted
Oh by the way... I thought he was arrogant too!!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
Hi Clint, I am Amy's mom and I did see the doctor you are talking about--one time--and I recommend that you get the heck out of there. He is NOT an LLMD and came right out and told me that. He told me that he would put me on long term IV treatments, that could put me in intensive care or worse, and that my primary care doctor and our local ER docs would have to follow me and care for me because all he would do is prescribe the drugs and would not take responsibility for me as a patient beyond that. WHO DOES THAT??? I have A LOT of heart problems from Lyme and company. Lyme causes the heart problems. I started having palpitations in my early 20's and I am 51 now. I'm still here and just found out that I have Lyme and co-infections this past November. If you see a good LLMD, I am sure he/she will put all these fears to rest for you, but this doctor you are seeing is a moron and has no idea what he is talking about. One day he treats for chronic Lyme and the next day he doesn't believe in it.
-------------------- 3 Generations of Lyme & Co. Posts: 4 | From Girard, Ohio | Registered: Mar 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Everyone who has seen this guy (Who is he by the way?), message me so I can record reports. Whether positive, negative or everything inbetween -- I record the anonymous report.
It would really be helpful.
-------------------- 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.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Anxiety raises aldosterone which decreases total body and plasma potassium and a potassium deficiency conserves lysine.
Lysine is one of MANY nutrients Bb is robbing us of.
Your body is trying hard how to conserve it...cause we need it too.
So your body is making you "anxious" for a REASON.
Normally K, potassium, is INSIDE the cell and Na is OUTSIDE.
Bb triggers the reverse. Bb needs Na and NaCl.
Hyperkalemia (potassium too high) can trigger a seizure and so can hyponatremia (sodium too low).
Initially in lyme, hyperkalemia is often found, but in time, it drops like so much more.
Look very very closely at HOW the anti-anxiety drugs work (example: Xanax) with regards to sodium.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Very interesting Marnie!
My brother has Lyme and his K+ was low. Mine has been 3.7 twice which is on the lower side of normal, but as a vegetarian, I eat TONS of fresh stuff, my K+ should be off the charts!
This makes a lot of sense, I definitely get anxiety, it's much better than last fall, but I still can get it pretty good sometimes.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Marnie, I'd be willing to venture 95%+ of LLMDs know nothing about the workings of Bb compared to you. Especially as to how meds work, how the body channels process, etc. If I would've asked my old LLMD this stuff....
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by METALLlC BLUE: Everyone who has seen this guy (Who is he by the way?), message me so I can record reports. Whether positive, negative or everything inbetween -- I record the anonymous report.
It would really be helpful.
I PM'd you his info!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Same with me about the potassium. I am pretty much a vegetarian. I eat one piece of chicken per week... All the rest fruits, veggies and nuts.
My last labs showed low potassium levels (1 pt out of range) and my three prior were just in range. My sodium is always high normal. I do not use salt at all and do not eat processed foods, only fresh whole foods.....I was unable to cdomprehend these results..
Till now..thanks Marnie.
And Clint, jump ship quickly. Take everything this guy told you and dispose of it.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
My sodium and I think chloride are always low. Not sure why cause I eat more then enough sodium?
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Any Lyme Dr that only charges $50 for a visit must not take himself too seriously. Due to the complexity of Lyme cases no Dr can charge $50 and offer any real service other that tossing you a few pills.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
I guess no one has brought him up to the medical boards. I don't know though can you prosecute a doctor for lieing or just not treating patients? It sounds like they're allowed to say about anything... look at what IDSA doctors get away with saying.
Posts: 499 | From Indiana | Registered: Oct 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
well Clint I dont know what to tell you unless, I got my screen name here from taking Biaxin. And yes I tried many different antibiotics before, even Zith.
The Biaxin did me in within 3 days I couldnt walk. Then my LLMD was happy!
I wasnt, my life has gotten worse in most ways.
Yes I herxed hard within 3 days.
So I would either go by feeing better or by a herx in a change of abx. Print out this thread and show your doctor!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Doctors are way to arrogant to ever consider anything posted on a forum thread. Just see a real doctor and not thing quack.
Posts: 499 | From Indiana | Registered: Oct 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
you might be right, I tried to show my LLMD something and he was overwhelmed,
Posts: 2905 | From New England | Registered: Sep 2004
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
This is interesting. I live just outside Philadelphia and haven't found a good LLMD so went to Maryland. Can someone send me some info in case there is someone I may have missed? How about Dr. M. in Southeastern PA?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Dr. S in southeastern PA? He is a JOKE! Major JOKE! I hated that guy.
Be careful with any doctor who takes insuance. If they do, they most likely aren't up on what it takes to get a patient symptoms free. The insurance companies do not want to pay to help you get better. They are a for profit business and your health is not in their interest and they also limit the amount of time the doctor can spend with you. I hate insurance companies.
Hearing everyone herx. I wish I would herx!!!!! I have taken EVERYTHING this year and no herx.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
OK, I'm "closing" this Topic. It got the word out but I don't want this to turn into a "beating on the doc's Topic".
As I've posted before: "I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit.
Current HIPPA laws prohibit the doctor from discussing your care with anyone but you without your written permission. I suggest you respect the doctor - patient relationship by discussing any issues or concerns directly with the doctor and not posting them on an Internet BB."
Or ... simply find another LLMD.
Thanks and take care,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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