Am I the first???? problems finding backup doctor GA

Discussion in 'Lyme Disease Archives' started by victoria, Mar 9, 2006.

  1. victoria

    victoria New Member

    This is great, maybe it will take a load off the CF?FM board but it seems to me that Lyme and CF/FM are so intertwined... not a week goes by it seems that someone new is dx'd with it who had been dx'd previously as CF/FM...

    Anyway, my son was experiencing same symptoms as me about 16 months ago... after 'regular' tests showed nothing, we had him tested for Lyme with LLMD... 9 months of oral abx have not worked, so LLMD wants him to start IVs.

    Problem is finding a doctor with hospital privileges that is local as we are 3.5 hours away from LLMD. If we can't, then last resort will be to relocate him and my DH and i will take turns staying with him...

    Anyone else going thru anything like this?

    All the best,
    Victoria
  2. Countrymom

    Countrymom New Member

    I see the doc at the Marrietta FFC, she is pretty knowledgable with lyme. They cost alot and I don't know if they have hospital priveleges. They may know of someone though.

    I'm loving this part of the board!!

    Dani
  3. jarjar

    jarjar New Member

    You probably already know what I'm going to say. That is that you will probably have many people that have worked with ABX IV's answer your reply at lymenet. I think most of the crowd on this board are just dealing with oral abx but I could be wrong. Perhaps someone will pop up.

    Best of luck

    Jar
  4. victoria

    victoria New Member

    WOW I was so surprised to get an answer here now, apparently this board is back up and working?!?! hope it's here to stay!

    Anyway, we were not able to find anyone local willing to back him up, no surprise... ultimately if he does do IVs he will have to move to the metro area where his doctor is.

    However, we have been back to the clinic since my original post. It was decided since he shows signs of babesis (sweating for no reason) (altho lab tests were neg) he is to start this week with the protocol for that and see what happens.

    It was explained to me that with IV pts they start off treating the lyme for a few months, then switch to treating any co-infections, then back to lyme;

    they are starting to do this with oral meds pts as well as they feel it may be a better approach.

    BTW, during the 4 weeks or so that he was off all meds while we were trying to set things up for getting IVs, he said he was becoming increasingly fatigued........ sigh;

    coincided with my reading the Townsend Letter's article on Lyme just published that said whether you're doing oral or IV abx it takes about 18 months for it to penetrate the lyme cell wall form -

    so we told him to go back on the oral abx until his app't later in March -

    And which is why we felt comfortable with continuing on abx for lyme or whatever - the clinic agreed as well............

    Can't say how much relief we feel when we know the clinic does keep up with research!

    all the best,
    Victoria
  5. victoria

    victoria New Member

    I did post at flashnet for any possible backup doctors, but got no response :(

    during the last visit however at the clinic, the NP told me there was a pt who was doing IVs that lives about an hour away from us.

    So there may be a possibility that this pt's doctor would be within 45-60 minutes, which would be acceptable to the clinic, if indeed my son has to do the IVs.

    V

  6. ANNXYZ

    ANNXYZ New Member

    I am saying prayers that you find a doctor .
  7. redsox10

    redsox10 New Member

    Hi Victoria,
    What orals has your son been on? My daughter had very little improvement the first years. Dr. J. did see some small things improve but nothing big. He kept on telling us it takes time. When minocycline was added tot he mix she made big improvements. She still has a long way to go but she is getting there.

    My son started diagnosed in Oct. 05 has made big improvements with fatigue but that was not his big problem. Everyone is so different with this illness. My daughter did not show positive for Babesia untill the 3rd time she was tested.

    Who is your son's doctor?
    By the way... I really wonder if most CFS is Lyme Disease.
  8. jarjar

    jarjar New Member

    Is your son seen Dr. C in Springfield? For some reason I thought he was. Anyway just curious if you are still on MP if you can compare it to how your son has responded.
    Have you improved more them him?

    jay
  9. victoria

    victoria New Member

    Daneen's doctor is the one in Springfield. actually;

    My son also sees as we live in Georgia.

    He has been on a variety of abx, always in combination of 2 abx at a time plus the flagyl during the 3rd week -

    the biggest/major herx was the first month, during which he was basically in bed the whole 3 weeks with a major case of 'flu' like symptoms;

    I think it was Ketek plus minocycline (? - brain fog right now), but when he repeated that combination last winter, he still didn't herx much.

    Everything I've read talks about the slow replication of cell-wall form of Lyme - and that when you then take into consideration the dormant forms, it can take even longer, which is why the projection is at least 18+ months of abx.

    He has now been on the protocol for Babeosis since last Thursday, is becoming more fatigued and feels spacey/high on it.

    As far as comparison with my progress on MP - well keep in mind that I have not gotten any testing done myself as all our resources basically are going for him, so there's no telling what I have -

    but, my herxes haven't been as bad as his since one works up on the minocycline and can use Quercetin to mitigate it if it is too bad...

    and I saw resolution of pain in hips completely after one month on benicar. ...

    Also, as I progressed on the minocycline, I had to reduce my thyroid med from 3 grains to 1/2 grain, that was within 5 months of starting the minocycline...

    I've been on 'hold' far too long because of complicating factors (my elderly inlaws came to live with us last summer) ALTHO as I reached the 100 mg of mino I found I had better energy than I'd had in a while.

    My sinusitis also seemed to get better during last summer.

    I am going to resume the protocol next week. I still have adhered to the benicar and avoidance of light however, and the pain in hips has not returned :) - that is a major plus! Nor had to go back up on thyroid med. But I am more fatigued and went back to having headaches every day again.

    Do I wish he would try the MP? Yes, but I know he won't, as it would interfere with what little bit of social life he still has left and he'd be even more majorly depressed. Not to mention it is hard for an 18 yo to look 'weird' in a way they don't want to, at least.

    We all need to write letters in support of doctors as to how much they help pts.... look on lyme flashnet to find out where to send it.

    all the best,
    Victoria






    [This Message was Edited on 01/22/2008]
  10. kellyann

    kellyann New Member

    but I sure wish I did. I would like to try the IV antibiotics myself. Shoot, I get penicillin for my animals that is injectable. I am almost tempted to give myself shots of that! I am just so tired of hurting.
    Good Luck finding a doctor!
    Kellyann
  11. auntyemnga

    auntyemnga New Member

    I'm so sorry you've been going through this. I hope I can help you.

    I was originally diagnosed with CFS & FM at the Atlanta FFC. I stopped going there in January (and $4,000 poorer) as the doctor messed up my hormones. The hormones gave me a breast cancer scare and as a 2 time breast cancer survivor I don't need anyone messing with my hormones.

    I switched doctors and am now seeing an internal medicine doctor who practices Field Control Therapy (FCT). He just diagnosed me last week with Lyme and that's what brought me to this board.

    His name is Dr. Dave Ou of Internal Medicine of Rockdale County. Depending on what area of Athens you live in, you could be here in 45 minutes. You also wouldn't have to endure any of the Atlanta interstates!

    He is located behind Rockdale Hospital. His website is drdaveou dot com and it explains Field Control Therapy. I have also posted over on the Fibromyalgia message board the steps that I have taken.

    Dr. Ou has a FM patient that started with him in September who can now go shopping without pain and without fatigue. Unfortunately, I have the dubious honor of being his worst patient. That's ok, tho, cause I truly believe, with time, that I am going to get lots better.

    If you're interested, look at his website and read my 'Field Control Therapy' posts on the Fibromyalgia board and then if you have any questions, I'd be happy to answer them for you.

    Good luck,
    Auntyem[This Message was Edited on 05/24/2006]
  12. victoria

    victoria New Member

    we'll take some time to look at the research. What made you decide to do this?

    The major problem would be our son's adherence to the dietary part... he is a very skeptical soul that is still in the stage of denial and depression;

    if he hadn't been positive on Lyme testing I'm sure he would have reverted to total denial... the only way still that he can deal with it is to not think about it and try to be as 'normal' as herxing allows him to be, ie, not too much too often. Sigh, he is 18!

    Thanks again - Conyers wouuld only be about 45 minutes away as we're handy to the bypass around Athens which connects to 78.

    Victoria

  13. auntyemnga

    auntyemnga New Member

    What made me decide to do this? I've been fighting fatigue and low back pain for over 20 years. As a single mother for the last 8 years I was seeing that my kids were having a rotten family life just as I was.

    I had complained of fatigue to my PCP, oncologist and endocronologist for probably 7 - 8 years or longer. I had bought lots of books about CFS & FM. I truly thought that was my problem. However, back then doctors didn't normally diagnose CFS/FM and if they did, they didn't know how to treat it.

    In August 2005 I had my annual physical and once again said I was tired. My PCP told me (and had for several years) that she and my oncologist would talk and neither of them knew why I was tired.

    At that point I knew I had to take matters into my own hands. Heck, I was turning 50 in May 2006 which meant for almost half of my life I have suffered with fatigue.

    In October of 2005 I started going to the FFC even though I didn't have the money. I thought they were the answer to my prayers. I did everything they suggested including driving to Marietta twice a week for the IV's. Gas alone cost me $20 round trip! It was rough being a single mom and trying to get better and work my 40 hour week job.

    In November 05 the FFC doctor put me on bio-identical hormones. My trusting soul said ok even though on the questionnaire I said I was a 2 time breast cancer survivor and I verbally told her I was not to take estrogen. But she said bio-identical hormones are different, they're safer.

    Well, by the Monday after Thanksgiving, I was so tired I couldn't get out of bed, which meant I couldn't go to work. I saw her again on Thursday of that week. She agreed to put me on disability. I can't remember if she changed any meds or not.

    Driving home from that appointment, I had shooting pains in my remaining breast. I called my PCP and told her. She ordered a mammogram and an ultrasound! Those tests were run on 12/13. The radiologist asked me what bio-identical hormones were, so I told her. She said no, no, no. I should never take any type of estrogen. She highly suggested I make an appt with my PCP and confess. That evening I stopped all hormones. By the next day the severe fatigue was gone and I was almost back to the sad level I've been living with for years.

    Earlier that week I had been on the phone with the compounding pharmacist and he told me that the estrogen was safer than the synethic kind but I still needed to be closely watched.

    I saw my PCP on 12/2? and told her what I had been doing. I told her the FFC had diagnosed me with candida yeast and she said everyone has candida yeast. I knew then I was in trouble. I told her the FFC also test for different viruses such as Epstein Barr and she said everyone is probably a carrier. I'm really getting down by now.

    She then told me that Dr. Ou is treating patients using something else but she didn't know anything about it. Well, a couple of days later, her office called me and said she had talked with Dr. Ou and he felt he could help me. I looked at his website and immediately called and made an appt.

    In 2001 I read a book titled 'Chronic Fatigue Syndrome, Fibromyalgia and Environmental Illness' by Burton Goldberg. The book had a section about bioresonance testing and mercury toxicity. I felt 100% sure that was my problem. However, finding a doctor using that technique or to even talk about mercury toxicity was fruitless. Dr. Ou's treatment is a form of bioresonance testing and that is why I jumped at the chance to see him.

    I saw the FFC doc for the last time on 1/4/6 and told her I had stopped all hormones. She did talk me into starting the cortisol again.

    I saw Dr. Ou on Jan 9, 2006. I felt so relieved that I had finally found a doctor that believed in mercury toxicity, candida, etc. It's been a slow road for me and I have now determined that my diet is holding me up. I've never really cooked. The kids and I eat out cause I'm too tired to cook. All I can do is shake my head at the thought of the money I've spent on eating out.

    I used to drink 2 - 3 32 oz Cokes a day. I now can go for days without a Coke. If I do get an urge, a sip or 2 will satisfy. Of course, Dr. Ou doesn't know that part. I've bought 3 - 4 cookbooks, a juicer and I still have trouble. I'm a picky eater. I've decided this week that I owe it to Dr. Ou to do better on my diet. I eat lots of salads with organic lettuces and such but I'm tired of salads.

    I'm sorry I wrote a book but I hate to think of an 18 year old who has his whole life ahead of him!! I don't want him to make the same mistake I did (but not all my fault) and live another 20 years as is. The help is out there for him. He just needs to have an open mind about Dr. Ou's treatment and to follow his protocol. If he gets treated now, it will be easier than if he waits another 2 - 5 years.

    I asked Dr. Ou how long it would take to rid my body of the Lyme and he said several months. It took me 3 1/2 months to rid my body of mercury enough that Dr. Ou felt it was ok to have my fillings replaced. I'm still checking into that.

    They take insurance but I'm not sure of what companies they take. I have Blue Choic POS and I'm very lucky to have a $10 co-pay. Unfortunately, it's going up next year.

    I'd do anything to be 18 again (or almost anything).

    Please keep me posted on what your son decides to do,
    Auntyem

    PS: I call Dr. Ou..... Mr. Wonderful. He is doing a wonderful job using FCT and he is dedicated to learning more. He spent a week in New York earlier this month with the doctor who developed FCT. He is now treating me with stronger remedies.
    [This Message was Edited on 05/25/2006]
  14. victoria

    victoria New Member

    I am a veteran of 'alternative treatments' LOL by default... dx'd with candida 26 years ago in 1980... Candida of course IS in everyone, it just doesn't take over in everyone... have you read 'Leaky Gut Syndrome' book?

    I also did mercury chelation 4 or 5 years ago... had all my amalgam fillings removed by mercury safe dentist (in Norcross)... sigh, nothing really helped totally, it has been a slow downhill for me since I was 18 with mono for a year, also had meningitis during that time, these are of course herpes infections... but major crash about 10-12 years ago.

    Hey, don't feel bad, I'm turning 55, this has been most of my life now... best I ever felt tho was when pg & nursing...

    altho I haven't been tested for Lyme etc., the MP is working on me, so I KNOW I have something!

    As for my dear son, he has NO mercury fillings, probably eats a lower sugar diet than most 18 y.o.s because he found sugar and dairly cause acne... (amazing how complexion is such a motivator!) AND now he is taking supplements voluntarily, I'd found a list of stuff for Lyme, he has found that helps... & has taken diflucan with no change.

    but again, persistant chronic lyme still showing, plus probably has co-infections...

    DH is also die-hard scientist, that is why we need to look at research... if he supports it and it is 'proven' our son will believe it... but he is such a skeptic himself, granted we taught him to be plus I'm sure it is genetic, LOL, the problem is that he is 18 and ignorant of a lot of things.

    We WILL be looking into it tho! Thanks for your story, I am glad you are getting better! The FFCs don't seem to treat Lyme etc the same as LLMDs, btw, so I'm glad that I did not opt to take my son or self there even tho Marietta would have been closer than Charlotte NC...

    all the best,
    Victoria
  15. auntyemnga

    auntyemnga New Member

    I haven't read the Leaky Gut Syndrome. I always steered myself towards CFS & FM. I had 13 mercury fillings placed in my mouth in 1985 and that is why I leaned towards mercury toxicity in 2001.

    By any chance did you go to Dr. Dressler in Norcross? I found out Monday that if a dentist goes to replace a filling and the tooth is severely damaged, he would need to crown the tooth. I had called Dr. Dressler's office this week and found out a crown is over $1200. (I lost the piece of paper I wrote it on so I could be off by a couple of hundred dollars.) I looked in my mouth and I'm afraid that most of mine will take crowns. I don't have the money for that.

    Mercury is also found in childhood vaccinations, athletic shoes with the flashing lights and a host of other things. Since your son has no mercury fillings, his diet is decent and he has age on his side, he might be able to benefit from FCT faster than a 50 year old woman with lots of toxins (ha-ha).

    It's weird that you were diagnosed (in a good way) in 1980 with candida. A chiropractor diagnosed me in 1986 with candida. She started me on nystatin and the candida yeast diet. I started feeling better. But then I said something to my husband about how I felt better, and whatever it was he said just put me down and I gave up. Oh, how I wish I hadn't given up.

    The way Dr. Ou explained FCT is like peeling of an onion. He treats the heavy hitters first and that allows other things to come to the top. I had asked him about Diflucan and he said no. He feels all Diflucan does is suppress the candida. His treatment actually removes the toxins from the body.

    Have your DH go to yurkovsky dot com. He's the doctor who developed FCT and his website is more technical. Unfortunately, there is not any research. Dr. Yurkovsky submitted FCT to several research associations, but nobody accepted it for research. FCT is used more in Europe than here in the US.

    I'm glad to hear you're a veteran of alternative treatments. At least you're open minded to the off beat stuff. When you go to Dr. Ou's site, he has a list of everything that FCT can help. The list is long.

    Please keep me posted on what you, your DH and son decide to do. Deciding treatment is a personal decision and what might work for 1, might not work for another. Dr. Ou has a support forum and a couple of patients have posted how much better they are feeling.

    My therapist has an acquantence (sp?) she ran into a couple of weeks ago only to find out the friend is also a patient of Dr. Ou's. My therapist had been on the skeptic side but now since she knows 2 people who are benefitting she's losing some of the skepticism.

    Good luck,
    Auntyem
  16. victoria

    victoria New Member

    I will look there.

    Yes, I did go to Dr. Dressler and yes, that is how expensive it is... BTW, you can orally chelate mercury and do it every several years if you cannot have all the work done at once... that was an option offered to me by both my MD and Dr. Dressler. The nice thing about Dr. Dressler is that he is not pushy at all, and he will do whatever you want. I am thinking also that he has cards from several people doing bioresonance, now that I'm thinking about it!

    I finally did it all as we were planning on moving to Mexico (until we realized that our son was not getting better as quickly as we'd hoped) - and before I realized that he may have to do IV abx (talk about expensive!).

    I had an amalgam filling in every tooth in my head... put it on credit cards since I knew I couldn't get it done in Mexico..

    ... well, one can, but I didn't trust it as someone I knew had, and it hadn't been done right cuz the dentist had let a trainee do it. Well, same thing happens here with surgeries, how else do surgeons get practice or teach new techniques...

    I did come up very high on mercury 24 hr urine test about 5 years ago, chelated orally, but the weird thing is I actually felt better WHILE I was chelating, then went back to feeling the same, unlike everybody else.

    Sorry I started rambling, LOL, easy to do on these subjects! Where are you located?

    I'll keep in touch... in meantime my son is trying med protocol for suspected bartonella... he starts next week.

    all the best,
    Victoria

  17. auntyemnga

    auntyemnga New Member

    When you said Norcross I thought it might be Dr. Dressler. Dr. Ou has chelated the mercury low enough to where he thought I would be able to handle getting them replaced. It took 3 1/2 months, but he got me there. He was also going to give me special remedies to take the day of or the day before.

    I'm a single mom and am not in the best financial shape to be able to afford crowns all around my mouth. Heck, I wasn't able to afford the FFC and used my credit cards for that and they bombed. I don't want to do it again.

    If I knew it would just be the fillings, I think I could handle that. But that's a lot of money that I don't have to spend on something that is not 100% a sure thing. That's why I've been doing a lot of thinking this week once I found out about the crowns.

    I just re-read your post and am confused. (not hard to do today!!) Did you chelate and then get your fillings replaced? Or did you replace and then chelate? Also, are you feeling better after replacement or you're back to the way you were? Last question: Are you glad you had yours replaced?

    I'm having a really hard time deciding what to do.

    You're right.......it is so easy to ramble (as you can see by my previous posts)!

    I haven't heard of bartonella. I guess it's a virus?

    I live in Conyers and am not too far away from Dr. Ou. I've been going to that practice for about 10 - 12 years.

    I'm actually in the middle of composing an e-mail to Dr. Ou to let him know how my sleep study went last night and to let him know I'm 2nd guessing the dental stuff.

    It has been nice talking with you. Over on the CFS/FM board nobody really gets into alternative methods (I feel) like bioresonance testing.

    Some go to the FFC, some have found drs who are open to trying different things, some are trying to help themselves. I would get an occassional response to my Field Control Therapy post but they were only 1 time posts. I've talked quite a bit with skierchik. She has a doctor who has her doing different (I guess) home concoctions. They last we spoke she felt she was doing better. She also used detox baths and detox pads.

    I hope you and your son all the best!! Please keep me posted on his progress. My heart goes out to him because of his age. He deserves to live a healthy, happy life.

    Auntyem

    PS: Sorry, I rambled once again (he-he).[This Message was Edited on 05/25/2006]
  18. victoria

    victoria New Member

    I had to copy your questions as the first time I read your post all I remembered was your question about bartonella! SO,

    Did you chelate and then get your fillings replaced?
    ------Yes, the time between these 2 events was about 3 yrs.

    Or did you replace and then chelate?
    ------No, altho I want to get another 24 hr urine provocation test just to check mercury levels now to be sure everything is ok now.

    Also, are you feeling better after replacement or you're back to the way you were?
    ------I had zero obvious change after successful chelation or replacement... again, it was weird I felt better during the chelation! But I figure it is an important key to helping my immune system overall even if there isn't an obvious connection or difference. (Sort of like taking vitamins and eating right, etc.)

    Last question: Are you glad you had yours replaced?
    ------YES, cuz now I don't have to think about it! I also had the Clifford test done to make sure what dental materials were safe for me, so I have that to refer to if I ever need to go to a different dentist.

    And again, I do feel it was important to help my immune system since I'd been quite high in mercury. I ALSO however stopped eating tuna especially, even before I started the marshall protocol.

    I haven't heard of bartonella. I guess it's a virus?
    ------No, it is a bacteria, but not a spirochete. Look at Dr. Burrascano's info about it, it is online I think at ILADS. It is also called 'cat scratch fever' but it has varieties just like lyme does, and is tick-borne.

    I'm having a really hard time deciding what to do.
    ------Well, I started originally by just getting replacement work done as needed... that way you are only spending a little bit more than the usual procedures cost.

    In my case, I had a lot of teeth that needed crowns anyway due to number of old fillings in teeth that needed to be replaced (made it impossible to keep filling them), had 3 old crowns and a couple of old fillings crack in the past 2 years as it was.

    When you go thru all that pain and trauma just for one, it isn't much more pain and trauma to do 3-4 at one time per quarter-mouth, sigh! (I had 13 crowns done overall)

    If you regularly keep tabs on your mercury levels, this may be the best and least expensive way to go, and was what I was going to do until we thought we were moving out of the country.

    Hope this helps, and hope you continue your upward climb!
    Victoria

    PS have to say, for my own selfimage LOL, the reason why I had so many fillings was because I had a crooked dentist during my teen years... as soon as I left for college out of state, I suddenly miraculously had no cavities, how amazing...

    Making a long story short, suffice to say, my old dentist ended up as the lead story in Newsweek in late 1980s as a scofflaw Dad and also running from IRS for not paying income tax, had fled to a foreign country where there was no extradition treaty with U.S.




    [This Message was Edited on 05/26/2006]
  19. auntyemnga

    auntyemnga New Member

    What is a Clifford test? I haven't heard of it. Is it something that Dr. Dressler does?

    Dr. Ou responded to my e-mail saying the older the fillings, the more likely they'll leak. He thinks my fillings are slowing down FCT significantly. He said I could do a few at a time.

    He told me about 4 other FM patients. One barely has any pain left and yes able to shop for hours, one has reported a 70% decrease in pain, and another used to barely be able to walk a mile with a cane but now can walk 3 miles without a cane.

    He's treated all of them longer than me and they all had their fillings replaced. He could not have imagined such improvements in fibromyalgia were possible a few years ago since the success of "scientific modern medicine" is about zero percent. He had a fifth patient but she quit because she couldn't stop her chocolate habit.

    After I received his e-mail I called Dr. Dressler. Ooops, they are closed on Friday. That call will be on the top of my to-do list for Tuesday. Thanks for letting me know your feelings about getting yours replaced. That helped reinforce my latest decision to go ahead and have them replaced.

    I blame my 13 fillings on me being lazy. While I was pregnant with my son, I would go to bed to watch the news and would eat a bowl of ice cream. Here's the bad part.... I was too lazy to get up and brush my teeth.

    Ooooh, the lessons we learn in life.

    Take care,
    Auntyem
  20. victoria

    victoria New Member

    Yes, Dr. Dressler has you do the Clifford Test for dental materials (a blood test where they test for reactivity/allergy to all the different dental materials used for fillings etc.) before he will fill or replace anything.

    I was told something different by my MD, and I believe Dr. Dressler said the same, about old fillings --

    that most if not all the mercury would've leached out by now as most were very old, dating from my teen years... making them about 35 years old.

    There are some stunning case histories about changes people experience once they're out and mercury is chelated properly...

    wish I'd been one of them, but I do feel that I'm laying the groundwork for getting better ultimately.

    good luck!
    Victoria