METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It is important that the reader consider the positive things that my LLMD has done after reading my post. My LLMD is a great man, and I do not want people to think otherwise or that he can't be of service to them. So please see tanzi2u, and Tracy9's posts on the second page for more information.
I'm considering going against the recommended advice of my LLMD. I see a doctor in Massachusetts. I've worked with this physician for 6 years. I've done IV Vanco, Oral Pen, Azithromycin, Amantadine, Tetracycline, Biaxen, Plaquenil, etc.
I've listened to the same tired repetition over and over, and eventually I grew tired. Especially hearing these things:
"I don't think chronic co-infections exist like Babesia or Bartonella, I just haven't seen it." "Lyme disease is not sexually transmitted." "Lyme Disease is only a concern during the first trimester if the woman is infected during that time, not if she has chronic lyme. It is not passed on." "Tests for Lyme are inaccurate, Igenex has no peer reviewed papers supporting their claims, even though they might be good, I don't use them." "You'll be better in 18 months." (I wasn't better) "Flagyl has no effect on Lyme Disease." "Minocycline isn't effective alone for Lyme, but it can sometimes be used with Zithromax and Plaquenil or Biaxen and Plaquenil." "Bactrim has no effect on Lyme Disease." "Levaquin is too dangerous to recommend to any patient beyond 2 weeks, it has neurotoxic and tendon damage side effects." (Good reason, but not true for all patients as many recover on it) "Do not use vitamin supplements or any other supplements while treating Lyme Disease." "Avoid Vitamin C, and B supplements especially as they might feed the Lyme." "Lyme disease doesn't have anything to do with autoimmune diseases, your crohn's disease is a separate disease I think" (Even though it was getting better down the road when the Lyme got better)
I'm a patient human being, but I've had enough and as I've learned more about this illness (s), I want some damn answers. Clearly antibiotics aren't working well for me, and or I may have co-infections or a resistent case of Lyme disease. Maybe I need a different combo, maybe I need vitamins. I have no idea.
I've recently purchased a Rife machine after talking to some people that I trust and I'm considering seeing Dr. H down near Boston. Financially I'm in a bad position, and the enormous costs associated with seeing most LLMD's is just outrageous. Besides Dr. H, who around NY, CT, VT, NH, or RI would be a good physician that I could see at least 2 times per year or more, and who actually is up to date on the latest in treating Lyme? Also, I'm receiving contradictory reports on the pricing of Dr. H. Some say 300, some say 150, some say 450.
Has anyone gone against their LLMD and decided to take some risk on their own? I have an EMEM3D and I'm considering purchasing supplements through Vitacost and using NSI products to clear out candida (Which I obviously have from years of antibiotics and not using probiotics), and then probiotics, immune stimulants, and a multivitamin.
This is a lot for a single post, so feel free to respond to any part that interests you. I could really use some advice.
It is important that the reader consider the positive things that my LLMD has done after reading my post. My LLMD is a great man, and I do not want people to think otherwise or that he can't be of service to them. So please see tanzi2u, and Tracy9's posts on the second page for more information.
[ 20. April 2008, 06:08 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.
posted
I am sorry to hear of your difficulties with treatment. My daughter didn't respond to antibiotics, she has only gotten worse during the past 3 years of treatment.
She has a very good LLMD, we don't believe it is anything he did wrong. When having this disease we have found that you have to do research on your own sometimes. Our LLMD's are not Gods, they are prevented in so many states from doing what they know they need to do but have to be very careful.
You have to be your own dective at times. We found that my daughter does not Detox. She can't get rid of the die off or the toxins that the medications cause. There are others that post on this board that have simular problems.
There is a 5 part HLA test that you can find information about on one of the LLMD's websites. If you are interested please PM me so I can give you his name.
Also there is a test that is done at Genova Diagnostics, it is called a Detoxigenomic Profile. It tells you what works for you and what doesn't and how exactly you can detox.
Good luck and maybe others will be along soon to shed more light on this.
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
| IP: Logged |
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Wow! I'm not sure what makes your doctor an LLMD.
I have had the Detoxigenomic Profile and upon receiving the results, was immediately yanked off all medications except a very low dose doxy 100mg MWF. You see, genetically I am very deficient in my ability to detox including abx and NSAIDS. As my doctor put it "I have been poisoning you."
Detox, detox, detox is my treatment. Herbal protocols to kill the microbes. I'm feeling good.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I switched from the doctor you have 8 months in. I know many people who have done this and a few who should leave.I will send you a pm.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
posted
Metallic--you know my thoughts on this--good to see that you will be getting even more input.
Luvs2ride--how can I get that test done?
Posts: 237 | From Rhode Island | Registered: Jan 2008
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Niere,
My doctor requested the test. I don't know of any other way to get it.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
quote:Originally posted by METALLlC BLUE: I have an EMEM3D and I'm considering purchasing supplements through Vitacost and using NSI products to clear out candida (Which I obviously have from years of antibiotics and not using probiotics), and then probiotics, immune stimulants, and a multivitamin.
He doesn't even recommend PROBIOTICS??? Ya gotta be kidding. Now I know why I never recommend HIM.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thanks for the advice, keep it coming. I got your e-mails too. Thanks for informing me of your experiences and recommendations.
Someone made an extremely good point via PM, and that point was don't stay with a physician just because they accept your insurance. In the long run it won't be worth the cost to your health. This is paraphrased, but the point is clear. Being **** poor broke and having been ill for so long, affording treatment is like bashing my skull against a wall. I have medicare and medicaid, otherwise I'm screwed living on a SSDI check that barely covers my damn rent.
I'm proud, but not stupid, so I'm asking my parents for help. They'll be able to shoulder some burden, but they aren't too well off themselves. This economy is raping us.
At any rate, I'm also going to work on the detox issue that was brought up by a number of people. I'm interested in giving the Cholestapure a shot too, which I've been hearing some really positive things about.
Keep it coming folks!
-------------------- 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
Have your vitamin D levels checked. My daughter's were so low it was appalling and she has been treated for years also. We switched to someone new just for some new eyes and it has been worth it.
I still had to ask for the vitamin D tests. After years on meds that made her sun sensitive and just being so inactive, I thought they would be low, but they were 4 & 7.
Supplementing has given her an immune boost that she desperately needed.
Be sure to get your levels checked before you supplement though, because vitamin D can be toxic.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: He doesn't even recommend PROBIOTICS??? Ya gotta be kidding. Now I know why I never recommend HIM.
When I asked him about it, he said "You can use it, it can't hurt", but he never recommended it to me. Like so many other people have said, he's a nice guy, he means well, but he's too conservative, too far behind the times in the research, and while he does prescribe long term antibiotics (obviously, since I've been on them 6 years) and has performed some clinical trials with Biaxen and Plaquenil as well as Tetracycline -- he just doesn't perform 80% of the ILADS guidelines, though he is an ILADS member if I'm not mistaken.
I feel like he's stuck back in 2001 in terms of research. He just recently told me last year about HHPV6, and said he's started testing for it, as research indicates it's associated with Chronic Fatigue, and can make Lyme patients worse.
I don't know about you guys, but a lot of physicians in the Lyme community knew about that back in 1997.
-------------------- 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
quote: blue, so sorry to read this!
you've got infectious dr.; i wonder if he ever treated the ILADS guidelines vs. IDSA guidelines!
i'll be deleting him from my list so no one else goes thru YEARS of this hog wash!
best wishes; if you need more names to pick from, let me or lymetoo know ok!! [group hug] [kiss]
Thanks for posting Betty. Here is the thing. I keep a list for the myspace group, and it's been easy helping other folks out, but because of financial circumstances and believing my physician, I've defended him and stuck with him for a long time. I was told countless times by him "stay the course, it will improve, it will improve."
He was the first doctor to believe me and he treated me. He obviously saved my life, as I'm around 35-50% back and forth, where as I was dying when I met him. The guy does treat long term, so I kept him on our groups Lyme list, however, I made sure to post comments from patients directly under his name.
This gives the patient the power to choose for themselves when they see other patients comments. Some people need "anyone" to treat them, to get them started, especially when they've got nothing left -- so I wouldn't say to remove him, but I would most certainly tell patients that if they go with him he absolutely will not give them anything but Tetracycline and Biaxen/Plaquenil until about the 3-4 th year. No patient should wait this long by staying with him.
If they aren't making progress by then, he'll turn to the IV if you beg. But if that doesn't work, you're back to Tetracycline and Azithromycin.
The guy gets a lot of people well, but just as many people remain ill because of his lack of attention to the ILADS broader guidelines. He takes just about any insurance plan, and in-fact he'll often treat for free for patients in dire straights. He only charges 125$ if you do pay for the appt, but you get what you pay for.
In short, I would keep him on the list (just a suggestion) but warn patients that he ought to only be used as a temporary bridge between the *******s they'd seen previously and the true LLMDs they should see as soon as they can financially afford it, because he will not treat their co-infections, and he will not give them accurate information, but he will fill out their disability forms, and he will dispense the antibiotics they likely need so badly to begin.
-------------------- 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
Sparrow is right, have him, the so called "LLMD" check your vitamin D levels. If they are extremely low or even moderately so, you need careful, steady supplementation to replace what should be there. If your LLMD doesn't know how to carefully supplement, find someone that does. And don't let anyone put you on Drisdol, the fungally derived vitamin D analogue, ergocalciferol. These D level tests are covered by insurance by the way...
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
| IP: Logged |
quote:Originally posted by Alv: and if you need him to call you back for emergency -he will never call you.
This is sadly very true. I learned this the hard way. I ended up in the ER one day, scared out of my wits--terrible air hunger, I thought my urine was starting to turn dark--I was in bad shape.
Gave the ER doctor this doctor's card and the ER doctor could not get ahold of him.
There were quite a few straws for me in my short time with this doctor, but that was the final one.
The right llmd for you is out there--don't give up!
I'll keep good thoughts for you. Posts: 237 | From Rhode Island | Registered: Jan 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I agree with others. The co-infection issue is key. I personally think most chronic lyme patients have co-infections. Without treatment you will never get better.
This doc may mean well but I would not consider him lyme literate in terms of effective treatment. So many of his beliefs are not correct from everyhing I've read. I know my own LLMD would not agree with most of what he has told you.
I hope you can get some help from someone else. At the very least, I'd probably insist that I be tested for co-infections. Even then, you could have them and the test can still be negative.
Good luck, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I've been to alot of doctors & none of them knew about the fact that the tests are not accurate. This was until I found my present doctor - but it took me 9 years of searching with no job or insurance.
These people were supposed to be experts!
I live in NJ - ground zero of Lyme...
Lyme is a difficult illness. I don't think there are any easy answers. I don't even know that the so-called experts (ILIADS included) even understand it.
There are many strains, people have different genetics, the tests are not accurate, insurance is in the business of making money, there's not enough research, the gov't may be hiding things about Lyme, and some doctors like to pretend that they know everything...
It's really up to each of us to find a way through all of this...
Good luck to everyone!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Im seing Dr. S here in CT and I have the same problem.
I have been seing him for 5 years and he has tried everything.
I started to herx on Biaxin and Doxy and he said stick with it.
Well the Biaxin gave me wicked chronic vertigo and MCS and prob a bad candida infection yet I still take it every day or else my feet kill me!
He doesnt know what to do and keeps thinking that Im doing better.
Im like "yea well I dont eat sugar or bread so that takes away the neuropathy."
When I first saw him I was drinking 10 cups of coffee a day with sugar. I think if he just told me to cut that out then I would have gotten better.
Instead I have this rollercoaster of treatment that has got me no where.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote: Sparrow said: Have your vitamin D levels checked. My daughter's were so low it was appalling and she has been treated for years also. We switched to someone new just for some new eyes and it has been worth it.
I still had to ask for the vitamin D tests. After years on meds that made her sun sensitive and just being so inactive, I thought they would be low, but they were 4 & 7.
Supplementing has given her an immune boost that she desperately needed.
Be sure to get your levels checked before you supplement though, because vitamin D can be toxic.
I agree with this. My daughter was in treatment a year, then her LLMD said he would like to try Vitamin D. He said without testing her, she is probably zero. She herxed HUGE on 400IUs.
She worked up to 6000IU and has been taking that for a year. Her D level is now 73! It gave her the biggest boost in her treatment.
I was recently diagnosed with Bartonella and HHV6. The doc said he would like to try to get my D up before thinking about anti-biotics or anti-virals.
He did a blood test first, since I'm a crossing guard and out in the sun an hour a day. Guess what!? I was only a 31. So, I'm taking 4000IUs daily and feeling it.
He says he wants to get us both up to 100
It's very difficult to become toxic. Your body absorbs 10000IUs daily for 15 minutes of sun. But, for some reason, the bacteria doesn't convert it, making you depleted.
Try D...it's cheap.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
WildCondor
Unregistered
posted
OMG! that's not a LLMD. Run far, far away! That's terrible care and how did you waste 6 years on that garbage! I have never heard a single positive remark about him in all 10 years I have been on this forum helping people. Run away!!
IP: Logged |
quote:Originally posted by Alv: I have spoken to another person that has seen him directly .He never checks on co-infections.
Also , if you do not address the co-infections -than the treatment will get longer you will not get any better and the Lyme will get resistance from the antibiotics.
That's absolutely key!!
Metallic....I don't think drs can tell us about Rife since it is not FDA approved. But if we bring it up, they can talk about it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
by the way he does seem like a weirdo
quote:Originally posted by METALLlC BLUE: I'm considering going against the recommended advice of my LLMD. I see Dr. D in Massachusetts. I've worked with this physician for 6 years. I've done IV Vanco, Oral Pen, Azithromycin, Amantadine, Tetracycline, Biaxen, Plaquenil, etc.
I've listened to the same tired repetition over and over, and eventually I grew tired. Especially hearing these things:
"I don't think chronic co-infections exist like Babesia or Bartonella, I just haven't seen it." "Lyme disease is not sexually transmitted." "Lyme Disease is only a concern during the first trimester if the woman is infected during that time, not if she has chronic lyme. It is not passed on." "Tests for Lyme are inaccurate, Igenex has no peer reviewed papers supporting their claims, even though they might be good, I don't use them." "You'll be better in 18 months." (I wasn't better) "Flagyl has no effect on Lyme Disease." "Minocycline isn't effective alone for Lyme, but it can sometimes be used with Zithromax and Plaquenil or Biaxen and Plaquenil." "Bactrim has no effect on Lyme Disease." "Levaquin is too dangerous to recommend to any patient beyond 2 weeks, it has neurotoxic and tendon damage side effects." (Good reason, but not true for all patients as many recover on it) "Do not use vitamin supplements or any other supplements while treating Lyme Disease." "Avoid Vitamin C, and B supplements especially as they might feed the Lyme." "Lyme disease doesn't have anything to do with autoimmune diseases, your crohn's disease is a separate disease I think" (Even though it was getting better down the road when the Lyme got better)
I'm a patient human being, but I've had enough and as I've learned more about this illness (s), I want some damn answers. Clearly antibiotics aren't working well for me, and or I may have co-infections or a resistent case of Lyme disease. Maybe I need a different combo, maybe I need vitamins. I have no idea.
I've recently purchased a Rife machine after talking to some people that I trust and I'm considering seeing Dr. H down near Boston. Financially I'm in a bad position, and the enormous costs associated with seeing most LLMD's is just outrageous. Besides Dr. H, who around NY, CT, VT, NH, or RI would be a good physician that I could see at least 2 times per year or more, and who actually is up to date on the latest in treating Lyme? Also, I'm receiving contradictory reports on the pricing of Dr. H. Some say 300, some say 150, some say 450.
Has anyone gone against their LLMD and decided to take some risk on their own? I have an EMEM3D and I'm considering purchasing supplements through Vitacost and using NSI products to clear out candida (Which I obviously have from years of antibiotics and not using probiotics), and then probiotics, immune stimulants, and a multivitamin.
This is a lot for a single post, so feel free to respond to any part that interests you. I could really use some advice.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
by the way he does seem like a weirdo
quote:Originally posted by METALLlC BLUE: I'm considering going against the recommended advice of my LLMD. I see Dr. D in Massachusetts. I've worked with this physician for 6 years. I've done IV Vanco, Oral Pen, Azithromycin, Amantadine, Tetracycline, Biaxen, Plaquenil, etc.
I've listened to the same tired repetition over and over, and eventually I grew tired. Especially hearing these things:
"I don't think chronic co-infections exist like Babesia or Bartonella, I just haven't seen it." "Lyme disease is not sexually transmitted." "Lyme Disease is only a concern during the first trimester if the woman is infected during that time, not if she has chronic lyme. It is not passed on." "Tests for Lyme are inaccurate, Igenex has no peer reviewed papers supporting their claims, even though they might be good, I don't use them." "You'll be better in 18 months." (I wasn't better) "Flagyl has no effect on Lyme Disease." "Minocycline isn't effective alone for Lyme, but it can sometimes be used with Zithromax and Plaquenil or Biaxen and Plaquenil." "Bactrim has no effect on Lyme Disease." "Levaquin is too dangerous to recommend to any patient beyond 2 weeks, it has neurotoxic and tendon damage side effects." (Good reason, but not true for all patients as many recover on it) "Do not use vitamin supplements or any other supplements while treating Lyme Disease." "Avoid Vitamin C, and B supplements especially as they might feed the Lyme." "Lyme disease doesn't have anything to do with autoimmune diseases, your crohn's disease is a separate disease I think" (Even though it was getting better down the road when the Lyme got better)
I'm a patient human being, but I've had enough and as I've learned more about this illness (s), I want some damn answers. Clearly antibiotics aren't working well for me, and or I may have co-infections or a resistent case of Lyme disease. Maybe I need a different combo, maybe I need vitamins. I have no idea.
I've recently purchased a Rife machine after talking to some people that I trust and I'm considering seeing Dr. H down near Boston. Financially I'm in a bad position, and the enormous costs associated with seeing most LLMD's is just outrageous. Besides Dr. H, who around NY, CT, VT, NH, or RI would be a good physician that I could see at least 2 times per year or more, and who actually is up to date on the latest in treating Lyme? Also, I'm receiving contradictory reports on the pricing of Dr. H. Some say 300, some say 150, some say 450.
Has anyone gone against their LLMD and decided to take some risk on their own? I have an EMEM3D and I'm considering purchasing supplements through Vitacost and using NSI products to clear out candida (Which I obviously have from years of antibiotics and not using probiotics), and then probiotics, immune stimulants, and a multivitamin.
This is a lot for a single post, so feel free to respond to any part that interests you. I could really use some advice.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
posted
Oh great, I am supposed to see him for the first time next week!
Posts: 35 | From MA | Registered: Feb 2008
| IP: Logged |
tickbattler
Unregistered
posted
Metallic, I agree with the others...this is no LLMD! My husband is with his 4th "LLMD" since last September and we have finally found one we believe in. I spent a lot of time researching this last time around, as I didn't want to switch again. For us it was between Dr. R in Manhattan and Dr. H in Hyde Park NY. We tried Dr. R last month and were very pleased with him. Both of these men have been treating lyme for at least 15 years and are up on the most recent info. One of the biggest factors for me in choosing an LLMD was whether they followed Dr. B's Guidelines. Supplements and alternative treatmeant were also important for me. Both of these LLMD's use them. Dr. R even uses Fry labs (where we finally tested positive for the bart that I have suspected my husband had).
Please find someone good! It's so worth the $$ because you will get better much faster. You seem very knowledgeable about this disease. You know it's time to switch LLMD's when you know more than the doctor!
posted
ljaz--I think Metallic is right--if you absolutely need to see someone, then by all means see him and at and least he'll get you started on something (my prediction--what he tends to throw at everyone--1500 mg of tetra).
But in the meantime you need to be looking for someone else. Unless all you have is lyme, this man is most likely not going to get you well and isn't that the whole point?
Just my two cents.
Posts: 237 | From Rhode Island | Registered: Jan 2008
| IP: Logged |
WildCondor
Unregistered
posted
If you have an appointment, I'd cancel it if I were you. Unless your insurance is going to pay for it, it certainly is not worth the $$.
These is a serious shortage of LLMD's, and most of them are overbooked. This one is NOT a LLMD and never has been.
IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I made little progress on Tetra or Biax & Plaq. I switched LLMDs & found one who dx & treats chronic co-infections. I'm convinced chronic Lyme is a comprehensive picture. By treating Babs, metals, yeasts, parasites, adrenals etc I made more progress rapidly than I'd made with my prior LLMD.
Be your own advocate & get 2nd opinions. LLMDs don't take it personally & it's your future that lies in the balance.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i've never heard one good thing about this supposed LLMD. please find someone else. you CAN get better.
posted
Blue, the things you quoted the doctor saying do not sound true to me nor what an experienced LLMD would say. Lots of people self-treat and improve. And there are also yahoo groups of people doing that and reporting on their results.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
This is a long long post, so most of you can just ignore it. It's just explaining why I stayed with my LLMD to WildCondor and summarizes what I went through over the last 21 years.
quote: OMG! that's not a LLMD. Run far, far away! That's terrible care and how did you waste 6 years on that garbage! I have never heard a single positive remark about him in all 10 years I have been on this forum helping people. Run away!!
Unfortunately I wasn't so fortunate. I read ratemd.com, and out of 10-15 reviews people had written astounding reviews. That only fueled my desire earlier in staying on board with him.
Here is what happened.
1987: Was infected, age 9
Between age 9 and age 19, I'd seen around 80 doctors. I was too young to manage my own care up until around 17-18. I'd been too sick, and well quite frankly incapable. My parents sadly were incompetents and had their own issues. They were not helpful.
2000: Finally my health degenerated to the point where I was near death, I'd been to every doctor I could think of, I'd studied medical journals, read online, been to the library, I was nearly a doctor myself! I ended up in the E.R. from what was believed to be anorexia. I'd lost about 80lbs in 4 months, and none of the local doctors would see me as a result of being blackballed. You can't see another doctor in the same office if you already seen another and you can't go back to a specialist if you've already seen another specialist in the same field. Most either wouldn't see me because I disagreed with their diagnosis (Since I'd done their treatments and saw no results) or they claimed I had a psychiatric problem or a psychosomatic illness and was causing myself to be ill.
2001, I came across someone purely by accident, as I was beginning to tell my story even in public, to anyone who would listen. A woman mentioned "You know, this might not be Crohn's Disease, or Bi-polar, or Anorexia at all. It may be Lyme Disease!" That was all she told me, so here I was, age 23, and I still had all these other diseases I was weeding through, but I kept Lyme in the back of my head. It was possible to cure/treat, it did explain the symptoms, but so did all these others, and I was just as prone to them.
2001 Continued: I finally hop scotch around from doctor to doctor, and ended up with an Infectious Disease doctor at Rhode Island University Hospital. I've now seen 150 doctors +, and the pile of misery is deep, no one seems to know what to do. A physician by the name of Dr. Thayer was studying the correlation between Crohn's Disease and a bacterium called Mycobacterium Paratuberculosis. I was trying to conclusively confirm infection, with that illness. Thayer said, I simply can't treat you with antibiotics, you're not a good case. Whatever that means. He thought I was just depressed initially and ran some questionnaires, which came back absolutely "not depressed". His comments "This is the first time I've given this test and someone has beaten it." I said "Beaten it? I'm not depressed man, and if I am, it because something is biologically causing it from some pathogenic source, not because of genetics, or circumstances in my life besides this illness! I like life, I want to live, and god damnit I want to be around people -- it's just.... I can't. Something has infected me." He then figured, well "I think it's Chronic Fatigue Syndrome." I said, "Listen man, is there anything you can do? I've exhausted all options back home that I know of. Help me out here, check me over for infections, maybe someone competent here can help?" And so I went down the hall with a recommendation to see an ID doctor. I told her specifically to include Lyme Disease, I believed it was the only test that would come back with "something" though I admitted it would probably be negative given I'd read some information on accuracy issues." Sure enough it came back negative. It was the only test however to show "anything" -- it revealed 41kd. That was all I needed to make my next move. I told her "Give me the two best physicians you know of within a 300 mile radius that specialize in treating severe long term Lyme Disease. She came back with two names My current LLMD and Dr P in Connecticut (the great one). I checked into both. One accepted my insurance, one didn't. I was **** poor broke, into debt so severe that my fianc� was considering leaving me, and my credit card minimum was higher than my long term disability through UNUM. Not to mention UNUM was trying to claim I wasn't disabled and was trying to pull my care.
2002: So of course, I went with my current LLMD. I read up on him, read all his studies, articles, checked patient reports, but the one thing I never did was join Lymenet, where I would have found out that my LLMD wasn't as good as I'd been hearing! Everyone told me he was "A +" - so I went and for the first time, since being a little kid, someone said "Yes, you are sick and it's something that isn't your fault. It's not a psychological problem, and it's not something that needed all these steroids you were prescribed. You have Chronic Lyme Disease."
Can you imagine the joy? Finally, someone I could trust, who told me everything I needed to hear! Well, almost everything. It turns out much of what I heard -- while sounding very sincere and very confident -- wasn't even true much of the time! I made a mistake, I assumed!
2003: Still sick, My LLMD. tells me don't worry it takes a long long time. So what did I do? I looked into whether Lyme Disease took a long time to recover, and sure enough everyone said it did. So rather than looking into all the reasons why, I just accepted that it took a long time.
2004: Still as sick as the day I met D. Once again, "It takes a real long time, it'll happen, you'll be ok, just hang in there."
2004: I end up hospitalized from a Herxheimer reaction. D. can't be reached for 4 days, apparently he's away at a conference, and my GP doesn't know what to do. Later D. tells me to "hang in there, this happens, just keep going, you'll be ok!" I start to suspect that isn't true, I persuade and convince the doctor to install a PICC line. While not incredibly well versed in Lyme, I was incredibly well versed in speaking and in organizing my medical records. So I showed him everything and said "Listen, my doctor is considering the IV anyway (Which he was in a year or so if I still didn't improve), I need the PICC line for nutrition, I'm dying here from anorexia, and clearly malnutrition." The doctor, convinced, decides to install a PICC line against his best judgment. D. later contacts the hospital, hears about the current state of things and decides to prescribe IV Vanco and 2 g of oral Pen for 6 weeks.
2005: Did everything I was supposed to. By now I'd read that IV Vanco was potent against Lyme, but I still didn't know much about any other LLMD -- in fact I didn't even know I had options! Lack of financial resources, and SSDI and Medicare/Medicaid made it almost absurd to think otherwise. All I knew was this was a good shot. Turned out, even with all the home nursing, the correct applications -- I still ended up with IV sepsis, and I probably ended up with IV sepsis because the line was not used for 4 months. I didn't begin until February of 2005, the IV was installed in November 2004.
2005: IV Line sepsis, fever of 106, I'm dying. By the mercy of God, or just pure luck -- when the ambulance rushed me into the ER I knew the doctor on call. He's my father's neighbor. He doesn't know much about Lyme, but he knew me and he knew I wasn't lying. He checked my fever, vitals, everything and if I was hallucinating he said "We've gotta get you taken care of before you die." I started crying like a little ***** on the table, I knew I was screwed at this point. I knew something else was wrong, and it wasn't Lyme and so did the doc. I ended up in a room for a week, seizures and excessive chills and fever. They tried convincing me I'd caught sepsis from my bowel. I knew it was the PICC line. Pull it, run the line, see if you get culture growth, gauranteed. Two infections came back from my blood and from the line. Levaquin and Bactrim were prescribed.
2005: April comes, I've just finished the 2 week cycle of Bactrim and Levaquin. Suddenly out of nowhere my health improves 5 fold. I go from near death at 5%, to about 50% functional, symptoms are significantly reduced, I can walk, talk, my mind is clearer! Was it the IV V, or something else? Could it have been the Bactrim? Maybe the Levaquin? Maybe a combination of all three? Well, I can't go back to IV V now, or Oral Pen (I ended up with an allergy to one of them), so I asked D.if I could try Bactrim or Levaquin individually to see if the response would yield further results." D. simply says "Bactrim is not effective against Lyme." "Levaquin is too dangerous." Well, he's probably right! I'm improved, so he says it's the IV V, then it must have been. I asked some people I respect about Levaquin and Bactrim. They reported "Uh, yeah they do have effect against Lyme, and co-infections like Bartonella." I start to get concerned again, that perhaps I need to get another opinion -- but D. wouldn't screw me would he? I confront him in his office, my entire family comes to the appointment -- they're finally truly afraid after the IV sepsis incident and question my LLMD. for not acting in an emergency.
2006: Continue on with Tetracycline. The positive results are gradually slowing falling again. My health begins to degenerate. D. convinces me and my family that he couldn't cope with an emergency with patients who live 150 + miles away, never mind across the world. It's the job of the GP to handle crisis. "Well I didn't know that! And even if I did, how is my GP supposed to know what the hell to do with such a complicated case!" D. reply? I'm responsible for your treatment, but your GP is responsible for emergencies. Sounds logical, really? It really did sound logical to me at the time. "What about by phone?" D. says "I can't provide medical advice over a telephone."
2007: Health is still slowly degenerating, with most days starting to fall around 35-40% functional. I begin once again to truly question my doctors competence. I organize a second opinion with Dr H in Western Mass. She takes part of my insurance, and the remaining fee isn't astronomical, I can scrap it together. Dr H pulls most of the same things my LLMD does. Co-infections aren't an issue, don't worry about them. Testing through Igenex, Fry, Bowen? "Why would you want to use those tests, they're all inaccurate to some degree just like Quest and Labcorb, and they aren't going to change the way I treat you. I know exactly what is wrong with you clinically through our long review of your medical history. I want to start you on Ceftin for 90 days, if no results, double the dose for another 90 days, if that doesn't work, triple the dose for another 90 and if that finally doesn't work, we're going with IV R. I felt like she was nice, but something was really really off. But wait, she's a well known and well liked LLMD I've heard, so she's just agreeing with much of what D. said! She can't be much better! I'll stick with D., at least he's shown some results and perhaps I'll see more with a different medication. He wants to try something new soon.
2008 My LLMD goes with Azithromycin and Amantadine. I report that I'm pushing for a Levaquin trial with my G.I. -- that I think given the history during the 2005 sepsis issue, that Bartonella may be responsible for my significant G.I. and neurological/psychiatric symptoms. While many other symptoms improved overall, these two were highly resistant. My LLMD threatens to drop me as a patient if I use Levaquin, claiming that Dr. C (My G.I) is ignoring the danger of tendon damage and neurological toxicity. Dr C (My G.I)says "I use it all the time on my Crohn's Disease patients, often with significant improvement! I don't know why they improve, but I know they do so I usually try it." By now I'd also been receiving reports here and there from patients reporting that my LLMD just won't treat co-infections and since co-infections had been suggested by a friend, I began pressing D. hard on that issue. "I just don't see Co-infections of a chronic nature here, and even if I did, Tetracycline and Biaxen hits them all." I said "Oh really? What about Babesia? "Well, I don't treat for that, because I haven't seen any cases of that."
2008 Continuet: Within the last two years I've collected a lot more information, began challenging my doctor a lot more since the line sepsis incident. The drastic improvement indicated to me that maybe he was right, but also -- the manner in which it all went down seemed "off." Things didn't seem right, so I trusted my gut finally. However the second opinion turned out just as weak and impotent, so maybe people don't know what they're talking about? I don't know, so I'll do more research. I press my LLMD hard, very hard telling him "You said you'd have me well in 18 months, it's now February 16th coming up and my 6th anniversary of being diagnosed. Can you or can't you get me well because this has gone on long enough!" My LLMD admits he can get me to maybe 70% + but he can't cure it. That's the last straw, the camels back has been broken
2008 Continues: I start asking full blown questions all over the net in search of more answers. I spent 24 hour cycles online reading Lymenet, reading Yahoo groups, reading through all the articles I'd glanced over at earlier times. I began cross referencing cases, and noticed a stark contrast between all the information I "thought" was true that my LLMD had told me, and all the information that other patients were reporting. Suddenly I realize supplements, herbs and alternatives aren't the devil like my LLMD had been purporting, that the idea of starving bacteria was incredibly stupid. My lyme brain actually begins to comprehend the stupidity and inaccuracy of all the information I'd received from someone who I put complete trust in.
2008 continues: Enter me, posting on Lymenet directly. I start asking questions telling people what I've learned, and now finally hearing from all of you about my LLMD. Lymenet confirmed my suspicion and I'm ****ed as all hell for wasting 6 years. Had I not been sick since a child, had I known I had other options, that there was a more specific route to take, I would have left much earlier, but circumstances collided in such a way to instill a lot of confusion, as well as giving benefit of doubt at various points early on.
And there you have it, that's how I stayed for 6 years in the hands of this current LLMD. I do not blame myself, although I am responsible for the consequence. Additionally you and I talked once in 2004 when I was finally starting to investigate a little more on my own. I asked you by e-mail if I could include your website on the myspace Lyme group. We planned to talk on IM but never did. It's a shame because maybe things would have been different for me.
[ 20. April 2008, 06:12 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
I just want to thank everyone so far once again for the great advice. Vitamin D, Probiotics, Detox, New LLMD, more testing -- am I missing anything? Anyone else have experiences like the one I 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.
posted
Thanks for sharing your story. I am going to make an appt. with Dr. P in CT (already left a message!) I just hope I don't have to wait months to get in to see him and start some tx.
Posts: 35 | From MA | Registered: Feb 2008
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
B12 you probaly need it and probaly injections.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Do most pharmacies stock B12 injections that you can fill with a prescription from your doctor? I know how to give myself self-injections, from all the damn Methotrexate I had to use about 8 years ago (Pre-diagnosis of Lyme)
I'm using Nystatin right now to help clear out the overwhelming yeast that I likely have in my bowel, and then I plan on using a high quality multivitamin. Other treatments that I can afford through insurance with Medicare/Medicade (Masshealth) would really be great. They both pay for nearly anything I want, which has been really great. It's just too bad many doctors won't accept my insurance.
-------------------- 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
Just a little FYI, I checked my father's b12 supply, he gets a monthly injection because the level was found to be low in the past. It has both a preservative and an aluminum adjuvant, I thought it might have thimerosol, but thankfully it appears that it does not...wtf? Why aluminum? In any event, oral B12 replacement should be tried first.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
| IP: Logged |
posted
Metallic Blue, thanks for sharing your story. Don't feel bad for being loyal to your doctor. You did the best you could with the information you had at the time. Although my daughter's experience is a little different, there are some similarities with your experience. We stayed loyal to her "expert" too long also.
I believe that even the best LLMDs still use their patients as guinea pigs, because there is not enough research to know how to treat these hideous tickborn diseases. My daughter has certainly been used as a guinea pig and has had problems with a port 3 times with 2 different doctors who also did not take responsiblity for them either. So doing your own research is imperative. You are smart to find out everything you can and start trying some supplements on your own. It's your body and you know it best.
We have a rife machine but my daughter herxes even when I run it for 1 to 3 minutes, so I don't run it all the time. I do think it can cure people, but that's my opinion. I also think detoxing is a big key and I think the patients that have a harder time with treatment, are the ones that have more trouble detoxing. Lymenet has helped me so much in discovering things that doctors don't seem to know or just don't tell and I am truly grateful for everyone's willingness to share.
There is an article in Public Health Alert this month that had some great information about detoxing. Don't mean to make this too long, but I just want to encourage you that you are on the right track and you shouldn't beat yourself up over staying with your doctor longer than you thought you should.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thanks you guys. No, go ahead, feel free to "make it too long" -- I can use all the information I can get in these posts. You guys have been sweet as sugar to me, which is great given I'm such a pain in the *** ! Thank you very much for telling me more about your situation.
I'm looking forward to the Rife treatment. I know "some" things about it, and I have a general idea of where to begin. I plan on starting around 15-30 seconds for my first session. I'll probably go with 15 to be safe and choose an obvious frequency that is common for Lyme. I'll keep an air-tight diary on my blog at myspace as well.
Thanks for reassuring me on this loyalty issue. I'm sure no one here really doubts why I stayed, but I sure doubted myself. My girlfriend told me over and over that she felt I did the right things, it just didn't connect well. The information was all around me, and I just didn't get it. I was inches away from answers, and that ****es me off knowing that, but I also know that my focus must be "now" not yesterday, or last year. Now is where it happens, where I can get it right.
Thanks Sparrow. And I'll find out as I go about this B12 too. I'm going to just keep track of this post, I'm sure there are a lot of ideas. This detoxing thing is most certainly huge. I recently did nebulized Glutathione. Holy lord almighty, I was ridden with pain and aches 3hrs after doing my first treatment. I knew it worked right then and there. I couldn't move! I was in a lot of pain, but nothing too consuming. I got over it by the morning, and did some Burbur through the day. I felt good actually.
So, Glutathione is certainly effective for those who want to use a machine and purchase it. My girlfriend let me use hers. Apparently Dr H in new york recommends Key Pharmacy.
-------------------- 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
You're going to start rifing? That's great! Oh, I'm so jealous! I'm just starting to look into that myself.
Did you buy your own machine? Oh, please do keep us up to date! I'll be checking your blog to see your progress.
And yes--DON'T beat yourself up. No point in it. You did the best you could with what you had and now it's time to move on.
I don't know why, but the other morning I woke up with the song lyric "sometimes you're the windshield, sometimes your the bug" going through my head.
Well--here are to more windshield days for you! Posts: 237 | From Rhode Island | Registered: Jan 2008
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I didn't really have time to read all of your posts. I'll come back later when I have more time.
You've really been suffering with this for a long time. You were a child when you were infected & you didn't have the best of care.
Don't blame yourself! The information about his awful disease is not being desiminated to the public & medical profession. Very few doctors really know what to do in any case. They are not gods.
You really have to have a bit a skeptisim about any treatment route you choose to go on.
Medicine works through trial & error. If you feel like something is not working - you have to find a different approach. It's hard that we have to do all the research but it's the reality of the situation.
We are all just trying to do the best we can.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: You're going to start rifing? That's great! Oh, I'm so jealous! I'm just starting to look into that myself.
Did you buy your own machine? Oh, please do keep us up to date! I'll be checking your blog to see your progress. [Smile]
Oh yeah, I got one used. The guy used it maybe 4 times for a few minutes each, but the reactions were so strong and his bacterial load was so high that he decided to box it. So from 2005 thru the present the machine sat in it's original box.
An EMEM3D! I didn't pay an enormous amount, 625 with shipping included, so I got a decent price and he made out ok too. They go for around 850-900 without shipping new.
I will most certainly keep everyone updated. I'm confident it will work.
quote: And yes--DON'T beat yourself up. No point in it. You did the best you could with what you had and now it's time to move on. [Smile]
I don't know why, but the other morning I woke up with the song lyric "sometimes you're the windshield, sometimes your the bug" going through my head.
Haha, that's funny. I've been the bug for a long time now. Hope the windshield doesn't hit me, er me hitting it -- ah you know what I mean.
quote: Well--here are to more windshield days for you! [Big Grin]
Exactly! Jeez, I so need to get well.
-------------------- 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.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Okay, PLEASE LISTEN to this.....
In defense of Dr. D., I think it is VERY important that we share all the facts.
1. Dr. D routinely tells people in their first visit that on average, to expect about 18 months or more of treatment.
He DOES NOT say "in 18 months, you will be well."
2. Dr. D is an ILADS doctor, and in fact was a SPEAKER at the last, 2007 ILADS conference, as well as at the 2004 conference.
3. He has done all the leading reserach on cystic forms, and is widely published on "Difficulties of Eradicating Intracellular Bugs", which was the topic of his presentation at the last ILADS conference in October 2007.
4. He is wonderful about giving you a thorough and insightful education about Lyme Disease on your first visit.
4. He treats Chronic Lyme Disease with long term antibiotics, takes insurance, and will treat you for years if necessary.
With all that said, I saw Dr. D for two years. He helped me IMMENSELY. I got a lot better while with him. In fact I felt the best I've ever felt since I've been sick. However, I felt I had plateaued and needed a new approach.
I changed to another LLMD, whom I love, and continue the struggle.
My point is, while many of the things stated about Dr. D are true, there is a great deal of exxageration in MB's post.
This is VERY UNFAIR. Let me tell you, faced with a choice of NO ONE to treat me, which is the case here in CT and MA, or Dr. D, who treated me with antibiotics for two years, which I could not get anywhere else, I'd see Dr. D. He is Lyme Literate, if not completely where some other LLMDs are, he is a heck of a lot better option than no one.
I still refer people to him. I tell them however if they aren't better in a year or two tops they need to look elsewhere. Guess what? Lots of people are not willing or able to travel long distances and pay for the cutting edge LLMDs.
At least with Dr. D they will get treated, insurance will pay, and they have a hell of a lot better chance of getting better than they do from their Primary Care Physician, Rheumy, or regular ID doctor.
Furthermore, he is a very kind, compassionate, caring man. Yes, he is very hard to reach by phone, but he tells you upfromt to email him. No, he isn't big on co infections; but if nothing else, he will treat your lyme long term.
It really frightens me that so much detail about an ILADS doctor is posted here for the world to see, and that people have trashed him so mercilessly.
Maybe he isn't the best LLMD, but let's not take him down completely here.
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
| IP: Logged |
posted
I agree completely with what Tracy9 has written.
That LLMD stated right up front that treatment could take 1 to 4 years, and that 70% of his patients do in fact get better.
I also want to add that he is an activist trying to change the IDSA policies and make legislative changes to further support Lyme Disease research and public and medical awareness.
[ 20. April 2008, 09:05 AM: Message edited by: tanzi2u ]
Posts: 115 | From USA | Registered: May 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Okay, PLEASE LISTEN to this.....
In defense of that LLMD, I think it is VERY important that we share all the facts.
1. That LLMD routinely tells people in their first visit that on average, to expect about 18 months or more of treatment.
You're right, he does say that. I've brought a lot of patients into appointments and sat there while he explained things. You're absolutely correct.
quote: He DOES NOT say "in 18 months, you will be well."
He did in-fact say that to me personally. I believe he was sincere when he said it. I don't think he realized I was ill for as long as I told him, which was a simple mistake since I'd been pumped full of steroids prior to seeing him. And that's an important fact everyone here should know, because it has a lot to do with why I've probably not improved as well as I should have. My LLMD did know about that though. And now that I remember that point, I'm going to post a reminder to readers to read my post on this second page as well as yours, so they get an accurate view from you as well.
quote: 2. That LLMD is an ILADS doctor, and in fact was a SPEAKER at the last, 2007 ILADS conference, as well as at the 2004 conference.
That's true too.
quote: 3. He has done all the leading reserach on cystic forms, and is widely published on "Difficulties of Eradicating Intracellular Bugs", which was the topic of his presentation at the last ILADS conference in October 2007.
Yup, that's true too. However he also said this, and this comes direct from the e-mail he wrote me:
"As for Flagyl, theoretically of no value as Lyme genome has no sequences to metabolize Flagyl; if it helps some Lyme patients, probably indirect effect on the gut ecosystem. Best wishes for the coming Holidays and New Year." And we all know Flagyl "does" have value against the cyst form of Lyme, which he apparently has done leading research on.
quote: 4. He is wonderful about giving you a thorough and insightful education about Lyme Disease on your first visit.
I absolutely agree. I in no way shape or form disagree with.
quote: 4. He treats Chronic Lyme Disease with long term antibiotics, takes insurance, and will treat you for years if necessary.
Again, absolutely right. I covered a lot of this in later posts in this thread.
"The guy does treat long term, so I kept him on our groups Lyme list
I wouldn't say to remove him, but I would most certainly tell patients that if they go with him he absolutely will not give them anything but Tetracycline and Biaxen/Plaquenil until about the 3-4 th year."
I also said:
"He takes just about any insurance plan, and in-fact he'll often treat for free for patients in dire straights. He only charges 125$ if you do pay for the appt, but you get what you pay for."
I also said:
"I kept him on our groups Lyme list (Myspace), however, I made sure to post comments from patients directly under his name.
This gives the patient the power to choose for themselves when they see other patients comments. Some people need "anyone" to treat them, to get them started, especially when they've got nothing left -- so I wouldn't say to remove him, but I would most certainly tell patients that if they go with him he absolutely will not give them anything but Tetracycline and Biaxen/Plaquenil until about the 3-4 th year. No patient should wait this long by staying with him.
If they aren't making progress by then, he'll turn to the IV if you beg. But if that doesn't work, you're back to Tetracycline and Azithromycin."
quote: With all that said, I saw that LLMD for two years. He helped me IMMENSELY. I got a lot better while with him. In fact I felt the best I've ever felt since I've been sick. However, I felt I had plateaued and needed a new approach.
As I said above, no doubt, he gets a lot of people well and thank god he were there! I wrote earlier in the thread this comment:
"He was the first doctor to believe me and he treated me. He obviously saved my life, as I'm around 35-50% back and forth, where as I was dying when I met him."
quote: I changed to another LLMD, whom I love, and continue the struggle.
I'm in the process of changing myself, because I too reached a plateau.
quote: My point is, while many of the things stated about my LLMD are true, there is a great deal of exxageration in MB's post.
Oh, now this I disagree with. I was very forthcoming and have kept tedious records of every word my LLMD said to me -- word for word. I would never, under any circumstances, lie about the care my LLMD provided or provides.
quote: This is VERY UNFAIR. Let me tell you, faced with a choice of NO ONE to treat me, which is the case here in CT and MA, or my LLMD, who treated me with antibiotics for two years, which I could not get anywhere else, I'd see my that LLMD. He is Lyme Literate, if not completely where some other LLMDs are, he is a heck of a lot better option than no one.
Absolutely, I agree. And I said this in this thread earlier:
"Some people need "anyone" to treat them, to get them started, especially when they've got nothing left"
I said that in context of keeping D on the list.
"I've defended him and stuck with him for a long time. I was told countless times by him "stay the course, it will improve, it will improve."
I also said:
"I would keep him on the list (just a suggestion) but warn patients that he ought to only be used as a temporary bridge between the *******s they'd seen previously and the true LLMDs they should see as soon as they can financially afford it, because he will not treat their co-infections, and he will not give them accurate information, but he will fill out their disability forms, and he will dispense the antibiotics they likely need so badly to begin."
quote: I still refer people to him. I tell them however if they aren't better in a year or two tops they need to look elsewhere. Guess what? Lots of people are not willing or able to travel long distances and pay for the cutting edge LLMDs.
Exactly, and that is why I think he should be kept on the list.
quote: At least with that LLMD they will get treated, insurance will pay, and they have a hell of a lot better chance of getting better than they do from their Primary Care Physician, Rheumy, or regular ID doctor.
Absolutely. I agree.
quote: Furthermore, he is a very kind, compassionate, caring man. Yes, he is very hard to reach by phone, but he tells you upfromt to email him. No, he isn't big on co infections; but if nothing else, he will treat your lyme long term.
Absolutely without a doubt. You're right.
quote: It really frightens me that so much detail about an ILADS doctor is posted here for the world to see, and that people have trashed him so mercilessly.
I hope you don't mean me when you say "people", as I'd hate to be perceived as trashing or injuring anyone, I have only stated my experience. I would like to keep his annyonimity thus I haven't used his name, but what more can you expect? If we can't talk about our experience here in detail of what was said to us, where can we?
quote: Maybe he isn't the best LLMD, but let's not take him down completely here.
Agreed, totally. And to make things balanced I want to tell people to read your post here on the second page. I have placed it in bold before my first post and at the end of my first post at the start of this thread.
I'm not here to make things worse for my LLMD or any other patient or docto. I'm here only to tell my experience based on the facts I've received.
[ 20. April 2008, 06:16 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
quote: I agree completely with what Tracy9 has written.
That LLMD stated right up front that treatment could take 1 to 4 years, and that 70% of his patients do in fact get better.
I also want to add that he is an activist trying to change the IDSA policies and make legislative changes to further support Lyme Disease research and public and medical awareness.
I also want to add my support to what tanzi2 has said. All of this is true. He only told me 18 months, on average but he did say other patients took up to 24 months and more, some of which do not improve, around 10%. He told "me" specifically that I would be "well" by 18 months. He "said" cured at a later date, around the third year.
I asked him flat out "Can you cure me, 100%." He said "yes." I really believe he meant it and I believe he believed it too. I did improve at least, but only after IV Vancomycin, Oral Penicillin and possibly the IV Levaquin and Bactrim followed by 2 weeks more of Lev/Bac I received after the line sepsis. I don't blame him for the Line spesis though. I have since backslid over time, but I was never well at any point.
[ 20. April 2008, 06:16 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
I also want everyone to know that I have appealed to BettyG on my LLMD's behalf to not remove him from this list here at Lymenet. This doctor "is" of value to the Lyme community, so please do not condemn all that my LLMD has done.
Remember, my case is only one of many, and like I said earlier. Many people get well under my LLMD's care. I got "better", I just didn't get well, so take that as you will.
[ 20. April 2008, 06:17 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.
posted
Dr. D is a smart guy and I have a lot of faith in him. I've been on antibiotics for over a year with him and still haven't been better however. A small improvement in overall fatigue but my derealization, brain fog, and other neurological symptoms are in full force.
I will continue to see him until he says he can't treat me anymore, or doesn't know what to do.
> I feel like he's stuck back in 2001 in terms of research. He just recently told me last year about HHPV6, and said he's started testing for it, as research indicates it's associated with Chronic Fatigue, and can make Lyme patients worse.
Remember he said he's doing his own research study with this? He said I could take Valcyte for two months after this cycle of antibiotics.
-------------------- Lingering chronic symptoms: Fatigue, Derealization, Brain fog. Monthly fever with flu-like symptoms that last for weeks. Lyme WB Bands Positive: 31, 41, 58, 66 HHV6, EBV, CMV, & Mycoplasma IGG positive. Chronically Low CD4 count. Posts: 106 | From Texas | Registered: Apr 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
MB, Thank you for all your clarifications. I do see in your later posts you said many of the same things I did.
I appreciate all the time and effort you put in to setting the record straight!
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
| IP: Logged |
PM sent.
Posts: 115 | From USA | Registered: May 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes, please, everyone who has had experiences with my LLMD, please give your input. My intention with starting this thread was in no way intended to focus on my LLMD, but rather to find out about other patients and their experience of having worked with someone, -- anyone, whom they eventually lost faith in, or had to move on from. I only gave my experience as a reference point to start.
It's a scary experience for me to venture off on my own, after all we're talking about someone who saved my life. When I see him, I feel like I'm talking to my father. I feel the tension daily in this decision, as though I'm betraying him. I feel conflicted often, and I've been this way for a number of years. I was really afraid, that's part of the reason I stayed. Like so many of you I had nothing, no money, no family, nothing; I needed to cling to someone.
I'll never forget what he did for me, but I just don't believe him anymore. I just can't ignore all the research from the other physicians treating this disgusting illness and the fact that in 6 years I'm still home most of the time. Maybe I have a co-infection, maybe I don't. There could be something else wrong on top of Lyme. I need to find someone who can help me along on this new part of my journey, who can meet me where I am.
I'm told we sometimes outgrow others around us, our friends, sometimes our partners, and....sometimes for Lyme patients -- our doctor.
Maybe I'm angry, you know? Maybe I just wish it could have been easier. This illness takes away so much, it forces us to make such hard decisions. This was one of them. We lose so much. I don't know about you, but when I talk here on this forum, I'm doing it to save my life, that's all... that's why I'm here now and I can't do it alone.
[ 20. April 2008, 06:18 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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just somethings to consider.
1. If it weren't for this doctor none of you would know you had chronic Lyme and it still wouldn't be on the radar.
2. Posting what your LLMD is doing for you is super duper really really BAD news. No better way than to feed the sharks reading these boards than to post your FORBIDDEN protocols. Might as well just stick a fork in them than do that.
3. Rather than blame a doctor when things don't go as we plan or we hope they will, we need to realize some of us.. many of us... are going to remain chronically ill forever no matter what is done. That sucks, but that is the way it is.
4. If you are not happy with your condition, blame the IDSA.... not the doctors who are risking everything trying to help you.
5. REMEMBER- There is NO known cure for Lyme disease. There is NO known cure for coinfections. We do what we can.
6. LLMD's are trying. None of them know everything. But your other choice is a duck. Ducks often know nothing. And some ducks know something and won't help you at all.
7. If a LLMD can't fix you, maybe you are not fixable. Rather than crush the LLMD over it, find another to get a fresh look at YOUR situation to see if they can help improve your plight.
8. Staying with a doctor who isn't improving your situation isn't their fault.... it is yours.
I would love to see this entire post deleted from top to bottom. LLMD bashing is NOT a sport and can't possibly do the Lyme community any good.
If a LLMD hasn't helped YOU it does not mean they haven't helped 500 others.
This doctor was bashed horribly by a poster here a while back... then the wolves jumped in to eat his flesh.
Truth is, if you've been here long enough you'd know...
That same poster- banned several times from here- has systematically bashed every doctor they've ever had and beat them in the ground.... and caused HUGE harm to some very good doctors... and has limited YOUR ability to get treatment by doing so.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Before you even begin reading my responses, I want you to know that as a result of your post I have gone back and edited all my posts. I removed all the places I said my physicians initials and replaced them with "My LLMD" to better protect him. I hope this helps and demonstrates my true intentions.
quote: Just somethings to consider.
1. If it weren't for this doctor none of you would know you had chronic Lyme and it still wouldn't be on the radar.
I've thought long and hard about what you said in this post, and so I'm going to answer it in respect to how I feel, and tell you which advice I'm taking, as well as the parts that I'm not, and I'll do my best to explain each.
You're right, I would not be diagnosed without this physicians help.
I mentioned this earlier in the thread:
"He was the first doctor to believe me and he treated me. He obviously saved my life, as I'm around 35-50% back and forth, where as I was dying when I met him."
I also said this:
"for the first time, since being a little kid, someone said "Yes, you are sick and it's something that isn't your fault. It's not a psychological problem, and it's not something that needed all these steroids you were prescribed. You have Chronic Lyme Disease."
I also said:
"The guy gets a lot of people well, but just as many people remain ill because of his lack of attention to the ILADS broader guidelines. He takes just about any insurance plan, and in-fact he'll often treat for free for patients in dire straights."
So I certainly want to make clear that he's a physician worthy of respect.
quote: 2. Posting what your LLMD is doing for you is super duper really really BAD news. No better way than to feed the sharks reading these boards than to post your FORBIDDEN protocols. Might as well just stick a fork in them than do that.
I've done my best to keep his annonymity I really feel it's important to express what treatment I've had and the serious concerns I have about how this physician treats patients. They are very valid concerns and other patients should be informed. BettyG will make sure they are informed now when he's placed back on the list. Many posters mention the treatments they've done, and I do not feel I've violated any rules or disrespected nor endangered my physician by expressing that. However, I did decide to remove my condensed version after reading your response as it was not needed since it was redundant.
quote: 3. Rather than blame a doctor when things don't go as we plan or we hope they will, we need to realize some of us.. many of us... are going to remain chronically ill forever no matter what is done. That sucks, but that is the way it is.
I don't blame him, or at least I don't think I have. My intention was to simply state the reasons I haven't improved and things I was told that are in opposition to what ILADS protocol states, as well as what other physicians as a larger whole say. I'm not well because a tick bit me, plain and simple, and my parents were not there to care for me, and thus no one knew I was infected. No one is to blame for that.
Earlier in the thread I said:
"Many people get well under my LLMD's care. I got "better", I just didn't get well, so take that as you will."
I believe an answer exists and that I will not remain chronically ill for the rest of my life. I'm young, and I'm strong willed. I will find an answer. The impossible just takes a little longer, that's all.
quote: 4. If you are not happy with your condition, blame the IDSA.... not the doctors who are risking everything trying to help you.
I don't blame anyone for my condition, I blame Lyme disease and whatever other potential infection I have. I could blame myself possibly since I walked through the woods. I was a child though, and it was only a few years after the bacteria was even discovered. The IDSA has heard from me countless times, as I think you might have seen. My representatives, senators, everyone. I even wrote the President a number of times. I do hold them responsible for not furthering the research in order to resolve Chronic Lyme Disease but not that I have the illness. I also hold them responsible for not furthering research on other tick-borne infections, but as with all scientific revolutions: politics and financial interests become corrosive, and old paradigms collide with new theories and eventually only one can survive.
quote: 5. REMEMBER- There is NO known cure for Lyme disease. There is NO known cure for coinfections. We do what we can.
Absolutely, I agree. I believe a solution exists, I just don't know anyone that has discovered it. It's just waiting to be discovered in my opinion.
quote: 6. LLMD's are trying. None of them know everything. But your other choice is a duck. Ducks often know nothing. And some ducks know something and won't help you at all.
I absolutely agree, and I certainly wouldn't claim otherwise! What you're saying is a fact that can't be debated.
quote: 7. If a LLMD can't fix you, maybe you are not fixable. Rather than crush the LLMD over it, find another to get a fresh look at YOUR situation to see if they can help improve your plight.
I believe I am fixable though I don't believe I injured or attacked (Bashed?) my physician for it. I've seen improvements, but I do believe the possibility of co-infections, but my physician did not think a co-infection was involved in my case because he says chronic co-infections aren't a problem in his opinion. He's seen almost none, though perhaps maybe one or two. Perhaps he's right though, maybe I only have Lyme. With the Levaquin and Bactrim -- which were not prescribed by my LLMD, I saw a massive improvement but the treatment was very short, only a few weeks. The Levaquin and Bactrim were prescribed by the Hospital when my PICC line led to sepsis, which I don't blame on anyone either. It's possible the IV or oral pen helped, but I think the others caused my progress, I just can feel it deep down, I just can't prove it.
And you're right, I think a new perspective is absolutely critical.
quote: 8. Staying with a doctor who isn't improving your situation isn't their fault.... it is yours.
I do think I'm responsible but I don't think beating myself up over it is right. I mean I was a child when infected, and I was alone through all of my journey, and when I did find out in my early 20's, I totally let myself go, and clung onto my LLMD. I just didn't know what else to do. I felt paralyzed.
I am responsible. I couldn't have done it differently though, or I would have.
quote: I would love to see this entire post deleted from top to bottom. LLMD bashing is NOT a sport and can't possibly do the Lyme community any good.
I understand. I will not delete the thread. I feel that what has been said is actually of benefit, not negative. People need to know the truth and now they will thanks to my post. BettyG wouldn't have known any of this, and I wouldn't have known to tell her, if I hadn't spoken up. Now other patients will be armed when they go to the seeking a doctor section, and she tells them these facts. Also, I think if I'd done something wrong, Betty would have informed me -- I think? I'm not sure.
quote: If a LLMD hasn't helped YOU it does not mean they haven't helped 500 others.
I agree, and here is something I said earlier in the thread:
"The guy gets a lot of people well, but just as many people remain ill because of his lack of attention to the ILADS broader guidelines. He takes just about any insurance plan, and in-fact he'll often treat for free for patients in dire straights."
I also said:
"As I said above, no doubt, he gets a lot of people well and thank god he is there!"
quote: This doctor was bashed horribly by a poster here a while back... then the wolves jumped in to eat his flesh.
That's unfortunate. If that person's intention was to cause trouble and to harm my LLMD, then they should have been banned. That's unacceptable in my opinion.
quote: Truth is, if you've been here long enough you'd know...
I began posting a few weeks ago. I've had an account for awhile but never posted or read the forum. I joined only to post in the seeking doctors section in order to find a doctor for another patient.
I know now.
quote: That same poster- banned several times from here- has systematically bashed every doctor they've ever had and beat them in the ground.... and caused HUGE harm to some very good doctors... and has limited YOUR ability to get treatment by doing so.
What an awful thing to do. I'm glad that person was banned.
quote: Again.. just something to think about.
I know you don't agree with me on a lot of issues but I really do appreciate your response and I did make some changes to my thread because of your post. I'm also going to make another change, I'm going to put "LLMD" or something else in place of the initials to even further support my doctors anonymity. I hope this appeases at least one of your concerns, and I've asked other members to do the same.
Also, I've seen you post a lot, thank you so much for being so supportive, I've gotten some positive things out of them, and you sure know how to light a fire! The ISDA is going to pay with someone like you inspiring everyone! In-fact I wrote the Energy & Commererce guys Palone, and Dingle? -- I think that's them? I wrote them. [tsk]
[ 21. April 2008, 04:47 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
Ok, all the places I listed my LLMD's initials have been changed to "My LLMD". I also edited all of the quotes of people I quoted, changing the initials in them as well to the same thing.
I ask everyone who has posted to please edit your posts and remove my doctors initials, and to use "That LLMD" or something like that.
Thank you, and keep responding! The conversation has been useful, and you're all so kind.
-------------------- 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.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Please do not remove this doc from the LLMD list.
I think overall that you hvae to be comfortable with your LLMD. If your not time for a change.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
bettyg
Unregistered
posted
to ALL reading this list, i added this llmd BACK to my list...hooray
for all of you in the area and who is receiving treatment from this llmd!
i'm also adding this direct link of comments after their name/address.... *********************************
LEAVE THIS POST HERE! ***********************
MEMBERS CAN WEIGH PROS/CONS THEMSELVES, but be an INFORMED patient when they chose to go to any of our LLMDS nationwide!
this was recommended by someone else too; LEAVE IT HERE!
i'm going back up to the top and DELETE MY NOTE REMOVING THIS LLMD!!
I make mistakes too; SPUR of the moment decisions without consulting the others w/nationwide llmd lists!
IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thank you, I hope this appeases many of you. Also, I have further questions for the group.
I'm considering seeing Dr. H, like I said -- in Eastern MA, but I'm still looking for information on her.
I've been told by conflicting sources that she "will" treat my specific health issues, but then others are telling me she may not, even though she's treated countless others!
If I can't get a confident opinion of her then I'm considering going off on my own to self treat With the ILADS guidelines and a lot of really well educated people behind me and doctors to follow me/lab work, I think I'm more than qualified now.
What experiences do you have with Bactrim? What experience do you have with Levaquin?
I think I responded extremely well to both within 2 weeks of using both, I can't be absolutely certain since other medications were clouding the
-------------------- 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
Well, I figured I'd provide an update to this. Here was my last appointment with my LLMD on July 11th, of 2008.
Here is my documented account of my appointment with my Dr. today:
I saw Dr. __ today, and I have quite a bit of information to present. Upon walking into the appt, Dr __ asked me how my trip to Italy was. I answered honestly and told him my 3 months added up at most to 1 week of actually visiting places and enjoying the country. The other 10 weeks were spent inside sick. He looked at me with empathy and disappointment.
I told him, it's unfortunate, but I did my best. I "got out" like everyone has been telling me, so at least I did it.
He agreed and asked me how treatment was going, and whether or not I was still on the Tetracycline. I pointed to the paperwork which I had given him. Before each appt I write a summary indicating the severity of symptoms, any special notes indicating new symptoms or changes in medications, as well as a lifestyle history -- including limitations and patterns I've been able to perform, including exercise, outdoor activity, etc.
I pointed out the special note section and showed him which medications I had been on and off. The summary basically amounted to Azithromycin and Amantadine being worthless orally, and Tetracycline therapy causing a significant backslide that has continued since at least the spring of 2006.
Dr. ___ asked me if I was currently on the medication, and then said "Oh never mind, I see here you stopped June 16th 08. So you've been off treatment for about 3 weeks, is that right? I said "Yeah, about 3 to 3 1/2 weeks.
He then said "And how is that going, being off the medication?"
I said "Well, it's going quite badly really, I'm backsliding fast. About a week off the antibiotic and my health drops from 40-45% to 35%. That difference of 5-10% is huge for a Lyme patient, especially when you're riding that fine line between being homebound and able to go outside -- even if symptomatic.
Dr. ___ said "I see, so where are we would you say? Are you stuck? Is it a plateau?" I said "It's no longer a plateau, it's actually a decline. I am literally seeing an advancement of old symptoms coming out over the months, meaning the infection is not suppressed or even being killed, but rather actually active and moving quickly.
Dr. ___ seemed puzzled by this, and I said "You told me this wouldn't happen, but unfortunately even with 72 months of antibiotics, including some heavy IV, this infection is not dying. It's resistant, and persistent.
Dr. ___ then said "I see, and you had no response to the Azithromycin and Amantadine you said?
I said "Yes, I respond to Tetracycline like clockwork. If I take it, I can expect a herxheimer reaction in 7 days, a peak of suffering at about 12 days, and relief by the 14th day, with ongoing improvement, until I reach about 45% functional, then the medication loses it's ability to advance me further, and the antibiotic actually begins wearing out. Initially it worked for months, suppressing symptoms and helping me improve, but as time passes the time-frames of "improvement" are shorter, and the medication is weakening.
He then said "How did you do on Biaxen and Plaquenil? Did we do rounds of that?"
Yes, we did 3 cycles, 8 months each, and every cycle was a treatment failure. No response was seen, just like with the Azithromycin and Amantadine.
I then said "What would cause a bacterial infection to respond well to Tetracycline, but not to Biaxen, Zithro, or the agents of Amantadine or Plaquenil?
Dr.___ said "That's a very interesting question that I've been asking myself in your case, and I think it could just be that we're maybe not dealing with Lyme Disease -- perhaps there is another infection, or maybe a "Lyme like" infection.
I then said "Or, it could be actual Borrelia B, which is resistant to those medications, because frankly I know this is Lyme Disease. I'm certain of that.
Dr. ___ then said "Well, you know, this is why the whole "co-infection" thing has blossomed. With symptoms not improving in a portion of patients, it's become common to consider the possibility of another infection, and that very well could be what is going on, but I don't think it's with Bartonella as we know it, or Babesia. These just aren't things I see."
I then asked "So you think other infections can be involved, right? And his response was "Research has shown that H....
And I said "HHPV6, yes?"
And he continued "Yes, that's it, and other viral infections as well, such as ...
"Epstein Barr...."
And he again continued "Yes, that too, and how were your tests on those? Did with test you for HHPV6, CMV, EBV, and these others?"
"Yes we did, there they are....."
"Ah yes, I see them here in the notes, so this isn't the issue probably, but you had an old IGG infection with EBV, but that I can't do anything with, I can't give you any medication for that since I have no options. There is no medication available for that yet."
"I see, well -- I did perform further testing through Igenex."
"You did?" he asked?
"Yes, and I know you didn't want me to waste the money or time on this, but I also am running a stained smear through Fry Labs. I feel it was necessary"
"Oh, well then it will come back positive." -- His look condescending, and his intention obvious. I could tell he doesn't like Fry Labs, and he feels they produce too many false positives.
"Oh come on now, that's not true. I've talked with a very large portion of patients who have gotten testing and those tests have come back negative, besides I'm doing a smear......"
"Well, you would know better than me, I don't look at those sites."
"Oh come on, you have 10,000 patients, you said so yourself, you know far more than me. Don't be like that."
"Ha, well let's look at the Igenex?"
"All the testing was negative for the 6050 and 5090 panel, except for the Western Blot, and IFA."
"Yes, I see here the indeterminate IFA, which is of value, because it tells me there is an ongoing response."
"Yes, but you'll see...."
"Oh...this isn't good. Your Western Blot is a problem here."
"Yeah, it's not good. When I first received it, I saw the same thing you're looking at. This isn't a Lyme-like illness. This may or may not be a singular infection -- but neither of us can deny that there is one infection which is absolutely borrelia burgdorferi, and it's not an unusual strain, and is and active infection. It's producing IgM antibodies, and my IgG is only showing 4 indicators. The entire IgM is a mess."
"Yeah, this... isn't good."
"You think? I've been saying this for awhile, this isn't the right treatment for this particular infection, and now we have confirmation. And the report is accurate. It's not a false positive, because if you compare the other Western Blot done through the other 3 labs, - Lifelab, Quest, Labcorp the same bands are showing up and overlay correctly -- even though those were all negative by CDC standards.
"Yes, this is a problem, and I don't have a problem with Igenex. I believe their Western Blot is good and accurate, I've had enough experience with patients to see that."
"So, what are we going to do then?"
"I don't know, have you used IV Vancomycin or Penicillin?"
"Yes, you remember, in 2005 I had line-sepsis. The month following the line-sepsis was significant in progress, and that progress lasted an entire year. However I had an allergic reaction and we haven't returned to it since."
"An allergic reaction? How do you know?"
"Well, you know, the swollen balloon sized hands, face, and hive like rash across my entire body -- plus the diaharea gave it a way."
"Well, couldn't it have been a symptom of a Herxheimer reaction?."
"Oh no no no, you know an allergic reaction from a Herxheimer reaction when you've been treating for as long as I have. This was absolutely an allergy, and I believe it was the Penicillin, not the Vanco. We can test for it though, if you decide to ever go the Vanco or Pen route again."
He said "Yes, we should test for it to find out which it is, but I think it's an option to do in the future then."
"Well then, maybe, but it certainly won't be done via a PICC line if we return to it."
"............."
"Well, are you surprised? I mean really, obviously I developed line-sepsis because I didn't have adequate local support, and the nursing staff wasn't thorough enough."
"........ So, what do you what to do?"
"Well I think a chest-port is the obvious direction. I think the significant reduction in chance of sepsis is worth the risk of doing a procedure to install one."
"Ok, well we could do that."
"No really, I don't want to do that if I can avoid it. It's an option on the table, but really the last time provides me with plenty motivation to avoid it."
"Ok, well, we can try Ceftin instead of the Pen. It's the direction we often go when a patient is allergic to the Penicillin."
"That's fine, I've heard that from Dr. H, Dr. H in MA, and others. You know though what I think would be a really potent drug with less risk? IV Azithromycin combined with Minocycline and perhaps the Plaquenil."
"Yes, that would be but we'd have to use much higher doses, and..."
"Well, I don't actually want to do it, so it's not a problem. The IV Vanco will be real strong, but higher risk"
"What symptoms are you finding advancing most?"
"Well, I'm getting a lot of psychiatric symptoms, especially sleep abnormalities, shooting pain, and a lot of Fibromyalgia like symptoms in the skeletal muscular system. The CNS is shot, there is a lot of pain, a lot of abnormal visual disturbances too, like seeing stars when I stand or move around. The cognitive and psychiatric symptoms are getting serious though. I'm having "break downs, like -- I'm losing it"
"Are you having hallucinations, or anxiety or panic, what about numbness, tingling, neuropathy like symptoms.?"
"A lot of anxiety, yes. No real numbness or tingling lately. It's less of a problem overall here. Well, I don't know about hallucinations, but I'll tell you this, I've been seeing my counselor and recently we had a discussion and she told me that she was shocked by some of the topics and things I discussed with her. She said she was shocked not because of the content, but because she'd never heard me talk about any of these things before. She said after all these years, she should have known some of the things I brought up, and I found that highly disturbing, because in my head -- I remember telling her all these things. I remember telling her about family, about different people, and she claims that I never once brought up this, or that."
"Oh, wow, that must have been scary."
"Yeah, well just a little bit, because I don't know what's real or what memories are accurate, if that's what's been going on with me. That's insane."
"Yes, that's bad. When you say sleep problems, do you mean falling asleep or staying asleep?"
"Both, I wake probably every 5 mins as the disease progresses."
"I see you're still on the Ativan, how is that going?"
"Well, I'm addicted, so... not so well. It's working somewhat, but gradually losing potency. It does help me sleep, but I often have to double the dose in the morning if it doesn't work overnight. Meaning I wake maybe at 8 a.m. exhausted and miserable, and have to take another dose and sleep from 8 a.m. to noon or later."
"Can you sleep through the night with it at all?"
"No, but it's most certainly the infection driving the issue, because the symptoms progress in an order only associated with other symptoms, like abdominal pain, psychiatric symptoms, shooting pain."
"I see, so how is the bowel doing, are you having a lot of stomach problems?"
"Yeah, enough, but they're under control with the Nexium and Pentasa. Did you know Dr. Cooke retired?"
"Uh, and how do you feel about that?"
"Not good."
"So what are you going to do? Who are you seeing?"
"No one, but my symptoms and disease are under control. What I know for certain now is that Lyme Disease is most certainly driving an autoimmune disease process, and the Crohn's Disease is absolutely connected. It goes away as I treat the Lyme Disease, and returns only when the symptoms of the Lyme return. They are one disease, I know that."
"So are you planning on seeing someone?"
"I'm considering someone, yes, but I had to call Dr. Arenas to figure out what to do, because you know as well as I, that a Chronic Lyme Disease patient is going to get ****ed over by switching from one G.I. to another in a case like this."
"Yeah..."
"Dr. Arenas asked if I'd seen 3 or 4 doctors that he listed, and I had -- each had given me **** and told me "Nothing is wrong with you." -- which is fine, because obviously they're not paying attention to what I'm saying. There is one guy, a Dr. Weinstein that was recommended, and other people told me he's good, that he's the most laid back of the G.I. physicians at Mercy. He'd probably be of value Dr. Arenas said, and if he wasn't. Dr. Arenas told me to call him and he'd help me out."
"Ok, good. So this bowel issue, there is a drug called Rifaximin. It's been used since the 1970's, primarily for travelers, dealing with infections in places like Mexico or elsewear. It's been found to be a preventative of leading to diarrhea, and in studies, it was surprising to see that patients with irritable bowel symptoms, or problems like you're having, that they improve or go a way."
"Well, that's fine and all, but really my bowel issues are on the low end of the spectrum in respect to the others. It wouldn't seem ideal to try treating just the bowel."
"Well the drug is related to Rifampin, but it doesn't pass through the gastrointestinal wall, and is not a systemic medication."
"Uh, well then that makes no sense. Why would we use that to just treat the bowel, when I have about 50 other symptoms that are advancing, unless we were going to just go after the infection itself leading to the problem."
"Well I suppose we could do that, but we could give this Rifaxamin a chance, see how you do and then go from there."
"I really don't think that's a good idea, and I think we ought to go with Rifampin if we're going to do anything, because frankly, if Rifampin has an effect on Lyme Disease, which is being reported , then it would be sensible to use something that may be of value to the overall picture."
"Ok, well we can do that, maybe. It is reported, that Rifampin has an effect, perhaps because of it's intracellular activity."
"I think that's what we should do. I think Rifampin is a fabulous idea, and I think we should create a combination therapy out of it."
"Ok, well we can take Rifampin, and put it with Tetracycline."
"Oh no no, I don't think it would be useful to continue hitting the disease with a drug that is clearly exhausted. The only time the Tetracycline has been useful recently is when I did something that you didn't advise. I know I shouldn't have, but if you look at the notes, you'll see that I did progress when I boosted the drug to 2 grams per day, instead of the typical 1.5gm. "
"I see, but it worked?"
"Temporarily, yes. But it's not going to continue, because it was losing power right before I stopped using it. I had to stop antibiotics for the summer, which is what you usually want, but I also wanted to run the Lab with Fry."
"Well, then what do you think?"
"Well, I know you're not going to like this, but you were the one who did bring it up awhile ago, so here goes. Remember we discussed the idea of combining Minocycline with Zithromax and Plaquenil, in patients that weren't responding to the Zithromax and Plaquenil or Amantadine alone?"
"Right, yes."
"Well, it's not uncommon, as you've noted, to combine Minocycline with Rifampin. And if Tetracycline has worn out it's welcome, wouldn't it seem useful to take another cycline with a different mode of action, and to give it a shot?"
"Well that could be done, yes. The Minocycline I worry won't get into the cells however to the degree I want."
"So add Amantadine or Plaquenil, why not, right? It will work the same way. Afterall if you wanted to do the Tetracycline alone, which we obviously know gets into the cell, then add Rifampin, why not combine both with that. It should provide both drugs a more benefit effect in accessing the intracellular departments.
"Ok, yes we can do that. Are you experiencing rashes by chance?"
"Yes, I guess, I mean I've seen them on my side here on the left, and I've been seeing a lot of disturbing skin manifestations, but my skin is so damaged from the steroids, and I'm so used to seeing abnormalities, that quite frankly I can't tell you what "is" abnormal. I see that I keep having bruises, and I have this butterfly bruise on my neck that has been there for many years now. I have this bruise too over here on the back of my arm. "
"Yes, I see that, and the neck, ok -- so those are certainly abnormal."
"Do Lyme patients really get these bruises? I've never associated bruises alone as apart of my illness I guess."
"Yes, patients have them quite often."
"And they don't hurt. I can push on all of these, and nothing is there. I feel no pain, no unusual texture or anything."
"So when would you like to begin this routine? We could start you now during the summer, but you'd have to be extremely careful with the Sun, or we can wait until the summer passes and let you go without antibiotics for now. We can see how far down you go. You should level off and it shouldn't continue to decline like this."
"Well, to be honest, I don't agree. I think we'll see a continuing decline, but, I think it wouldn't be wise right now to start Minocycline. I think it would be ok to let things go without antibiotics, but I do think the disease is going to worsen and be ongoing. I'm not interested at the moment in diving into a new routine without preparing and understanding how I want to organize my life around it."
"Well then, after labor day I could see you, and we can reassess then what to do next. Would you be willing to come back in November?"
"I don't think so, I can't see driving this far to come back when I won't be starting the treatment until Fall. 2 months just isn't worth it."
"How about December?"
"I just don't see it. I say let me figure out how I'm going to go forward on this treatment. Let's see how much worse I get. If things get too bad I'll start Tetracycline back up temporarily, and then do the other regimen."
"Ok, well we'll leave it open ended for now, just make sure to call me at least one month in advance so I can fit you in.
"What do you think about having me get another Brain SPECT?"
"Well, when was your last Spect?"
"2007, I think."
"Are you sure? I have 2005, I saw improvements here, oh, but they were still abnormal."
"Well maybe it was 2006, yes that's it. It was normal in 2006, but with the progression of symptoms the way they are, I'd be concerned the illness is actually reverting back, and this is a problem."
"Well I don't have a problem with you getting another Brain SPECT, but I just don't think it's worth the time. I'd be very surprised if it was advancing that fast again."
"Well, we were surprised by the IgM, so I would think it's something we should consider in the future. Even if it's fine, it just seems reasonable to me."
"Ok, "
"And about the E-mail updates? You've stopped taking updates. This "every 6 months" thing isn't going to work. Look at how thin it is. I've had to explain everything at length, and it's taken up a lot more of your time and mine."
"Well it's just that I've gotten overwhelmed with so many e-mails. Why don't you go ahead and send me the updates, just fax them."
"I can't do that, I don't have access to a Fax, but I can send them by e-mail if you'd be willing to receive them. I'm not even asking you to read them, just peruse them quickly, pop them in a folder and we'll discuss them later. It's either that or I have to organize 6 months at once."
"Ok, if it's like that, then just go ahead and send them to me, and I'll do that."
"Alright, that works for me. "
"So I saw Under Our Skin. You did a good job. It got the point across."
"Thanks, so when did you see the movie?"
"Recently."
"How did you get a copy?"
"Well, I bought one, and I'd seen it earlier."
"Where did you get it? I've been having patients asking me how to get it, and I don't know exactly where to send them."
"Well that's easy, just tell them openeyepictures.com/underourskin/dvd"
"Oh ok, great."
-------------------- 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
So there you have it people. I'm still working with him, in-spite of my test results coming back from Fry, positive. Which of course is of not value to him since had it been negative, it would be meaningless, and had it been positive, to him it means it's even more meaningless. It's like accusing someone of being a witch, and tossing them in water. If they drown, they were innocent, but if they swim they're a witch!
I was sneaky though, I know BLO is part of my problem. It's so obvious now. So I did convince him to go with Rifampin and Minocycline to start, plus I have some other anti-borrelia, and anti-BLOW treatments in the works that I'll combine.
And I guess this blows a lot of your opinions out of the water regarding him using IV. Everyone says he doesn't. Well, he does. He just doesn't want to get screwed, so he refrains from using it as much as possible. It's not even a matter of how sick you are, it's a matter of how well he knows you, and whether his ability to practice will be threatened should something happen to you. With me, he knows I'm not going to turn him in or cause trouble. I know how this disease works, I know you get the **** end of the stick sometimes even when you do all the right things.
Well, I performed the Bactrim Experiment I said I was going to do. I didn't tell my doctor about it. We all know he said Bactrim had no effect on Lyme, and perhaps he's right. Dr. H in NY agrees with him, that Bactrim has no effect on Lyme -- but it "does" have an effect on Bartonella, and BLO (Bartonella like organism) defined by Dr. Burrascano.
I performed the experiment, 800/160mg x 2 with Bactrim for 10 days. I stopped earlier than 14 days do to a potential allergy developing. I had a debilitating herxheimer reaction on the 7th day, and my symptoms and health began to improve substantially on the 9th and 10th day.
So, Bactrim works.
Next on my list is Levaquin. I'll perform a 2 week experiment there too This will hopefully confirm that the 2005 Bactrim/Levaquin combo wasn't a mere coincidence, and that it really was one or both of those drugs that improved my health, and not just the IV Vanco or Oral Pen by themselves.
Seriously, I swear to God I have to usually go into my appointments like I'm planning a presentation before a billion people, to convince them and persuade them that I'm correct in my assertions and hypothesis. It's frustrating, but I do what I have to.
-------------------- 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
Hi MB -I read most of this post - forgive me reading is not as easy as it use to be.
All I kept saying to myself was Bart and or Myco -
Confused though - maybe I misread this - but I remember Rifampin being brought up as a tx - are you going to try this? From someone who has had some of the same sx - it was the additon of Biaxin and Rifampin that made my thinking more logical and "normal".
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I guess you are seeing Dr. D in Boston? I've heard mixed things about him. He may be right tho, a lymelike organism. Like mycoplasma or something.
Find the posts of barksplinter. He believes a Groshong catheter is safer than picc or port. If tetracycline worked, maybe IV doxy would work. A thought anyway.
I like Dr. L in NY (Armonk). He has helped everyone I've sent him to. He's very smart. Consider him.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: All I kept saying to myself was Bart and or Myco -
That's what I've thought too for quite awhile. My Fry Lab just came back with Hemobartonella or Mycoplasma spp
quote: Find the posts of barksplinter. He believes a Groshong catheter is safer than picc or port. If tetracycline worked, maybe IV doxy would work. A thought anyway.
That's a good idea, I'll look further into the Groshong.
quote: I like Dr. L in NY (Armonk). He has helped everyone I've sent him to. He's very smart. Consider him.
He's the best LLMD in the world at the present moment based on the research I've seen. I would most certainly consider him, but unfortunately for me the cost is unbearable. However, Dr. H in NY has given me the "go ahead" if I want to see him, and he said he'd accept my current insurance.
He's not seeing anymore patients now unfortunately who take Medicare. For now I'm staying with Donta, since I already got good insight from other LLMD's regarding what treatment to pursue.
I have plenty of Levaquin now, a back-up supply of potential Bactrim, if the possibility arose to try again, and with Donta I'll pursue and use the Rifampin and Minocycline.
I'm going to combine the Rifampin, Minocycline with Amantadine, then add Nutribiotics GSE, Dr. Zhang's HH, Coptis, and Artimesia, as well as NAC, ALA, ALIVE by Nature's W.
If the Levaquin trial goes well, I'll include that in my routine. At the end of 12 months (I may switch some of the Zhang stuff around based on my discussion with him or Dr. H), but if at 12 months I'm well, I'll then begin using my EMEM3D2 Rife machine and **** all over the remaining spirochetes that may remain in the joints.
but I remember Rifampin being brought up as a tx - are you going to try this?
-------------------- 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.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I don't do abx. I'm a very complicated case of MCS/severe fungal issues. So I'm stuck with alternative therapies. However I wish you could see Dr. L. I interviewed him at one point (for an article). He just seems really brilliant, and the people I've sent to him, he has documented very thoroughly. He gives what is necessary. He makes REALLY good clinical decisions.
If I thought I could do even 3 mos of abx (honestly can't, and it ain't being a wimp) I would go to him straightaway.
If they ever figure out a triple combo therapy (studying mice) that actually kills borrelia, I may try it. I'd go to Dr. L.
I personally don't send anybody to anybody else but him.
I don't know what insurance he takes.
I've heard mixed about Dr H. I don't trust his enthusiasms. Esp. re: Cowden herbs. But you do the best you can. Dr H is better than Dr D.
I would also suggest adding alternatives to your abx if you can. IVIG or hyperbaric if you can.
PS I should add--I spoke with a Dr. H in Texas and he says he is working to get a lab going where they actually culture borrelia strains and find out abx sensitivity. If this comes off think what it would mean. The problem is, look at your history. A lot of trial and error while your body has to endure all these abx and detoxify all the drugs. Meanwhile you don't know what you're hitting and you keep trying this or that. Its a crapshoot. Its unfair and difficult. I sympathize with you. Don't give up.
[ 05. August 2008, 10:06 AM: Message edited by: oxygenbabe ]
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Please do not feel badly. It is NOT your fault. This kind of thing happens to lyme patients all the time.
I have a friend with Lyme who had been in treatment with a doctor for 11 years. She would make some improvement and then she would backslide.
This went on for 11 years!!!!
She finally decided to change lyme doctors and she is now with a very prominent lyme doctor in California.
He immediately tested her for coinfections (her previous lyme doctor never had) and she has babs, bart, and erlichia!!!
He started her on treatment for coinfections and she is already feeling better than she ever has in 11 years. She's only been with this doctor for a few months now.
Switch to a better doctor and I am sure that you will see improvement in your health.
Lymer
Posts: 63 | From Humboldt County | Registered: Jul 2008
| IP: Logged |
bettyg
Unregistered
posted
sent oxygenbabe a pm to delete drs. last names and to use initials only.
mike, thanks for your detailed update; must have taken you way over 60 minutes to type this...
IP: Logged |
tailz
Unregistered
posted
I've lost faith in all doctors, truthfully - not just LLMDs.
I see a white coat or stethoscope or blood pressure cuff or chart or even smell rubbing alcohol, and my body reacts as if they are conspiring to kill me. Ordinarily I would call this a delusion, but I don't know - it sure seemed like they were itching to watch me collapse and decompose right there in front of them, and how many times should a person have to cry help?
Some of them even had smirks on their faces while doing it.
We're living in a dangerous world right now. Doctors come out of medical school, all proud that they have completed the grueling training, hardwired to fix people and make some money doing so, but essentially they've been brainwashed.
Brainwashed to believe everything they were taught in medical school was carved into stone as trustworthy and true.
I read an article once, written by a doctor, which claimed that only like 20 percent (it may have even been been 10) of what they learn in medical school is true 10 years later. Sorry, but that isn't statistically very comforting.
I could respect the medical establishment if they would, first, stop claiming that everything in the books right now is true and complete, and humble themselves to admit, they don't know anything for sure - even what they think they know to be true.
And secondly, if they would allow input from people like me, who could, in spite of my lack of a degree, teach them a few things about how my Lyme symptoms seem to increase whenever, for example, I go to visit my sister who happens to have a cell phone mast sitting in her backyard.
I don't think it's right that 'only' doctors and 'only' researchers are allowed to find causes and cures for diseases. I have a brain, too - and it's pretty amazing that the only part of my brain that hasn't suffered injury is the part that knows that EMFs/RFs - some combination of them - are responsible for my chronic Lyme.
IP: Logged |
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)
![[Smile]](smile.gif)
![[shake]](graemlins/shake.gif)
![[Big Grin]](biggrin.gif)
![[tsk]](graemlins/tsk.gif)
![[bonk]](graemlins/bonk.gif)
![[bow]](graemlins/bow.gif)
Printer-friendly view of this topic