posted
After meeting with his nurse who told me right away to stop taking multi's, (made me feel good, she believed I had Lyme), the LLMD said, "If you dont have Lyme, you have something just like it, that science does not know about" He is treating me with tetrycycline, 1000, to start for a week, then on to 1500 mg's for four months...No need to test for co-infects, I do not have the symptoms, and Igenex did, just waiting to hear from them. I cried when I left the office, I felt some closure to this mess. He said I should make a full 100% recovery, or damn near to it. Where I was on meds from time to time, it helped me. I am feeling crapy some days, but good others, he said this will take a month or so, then I will just keep improving and my Lyme will not get any worse. He said I may have been infected twice, or earlier than I thought, it just took a few weeks to come out. I was tested for co-infects 2 times, negative. He can and would change meds if I needed too, but I am going to give this a try. Remember, I was on meds a few weeks after feeling ill, then had more and more. From what I have learned from you folks is, that you have been ill for far longer than I, except a few of you, so maybe, just maybe in my case, I will recover sooner and with less problems. I hope the same for you guys!
I am on my way and I hope and pray for the same for all you beautiful people as well!
3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
Good Luck Boston Rob!!!
I know you feel like a ton of bricks has been lifted from your shoulders.
I remember my first visit with my LLMD.What a moment and what relief.Finally someone BELIEVED in me and truly felt and understood my PAIN.
So,buckle down,forge ahead,remember this is not a race,it takes time and patience.You will be running that marathon up there in no time. Posts: 1076 | Registered: Apr 2003
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Plese keep us posted on your progress. Glad you ae feeling some relief.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Been wondering when you'd surface, BostonLyme! Glad to hear things went well. Isn't it nice to have a visit with a non-duck, for a change! Your news sounds very encouraging!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
You are on the track to recovery. Congratulations and good luck!
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
If the doctor believes there is no need to test for co-infections, I would really question that. If you have Babesia for example, totally different treatments required and you won't get well unless you address coninfections. Sounds like you are on the right path, but push the doctor, ask questions, research at least 2 hours a day, put on your thinking cap, do your homework, and take control of the situation to get well from this disease...and even then it is a challenge. Good luck!
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by SForsgren: If the doctor believes there is no need to test for co-infections, I would really question that. If you have Babesia for example, totally different treatments required and you won't get well unless you address coninfections.
Yes, good point SF.
I had all the sxs of Babs but tested -. I made negligible progress on months of Tetra, Biaxin + Plaquenil.
I went to a new LLMD who treats coinfections based on clincal sxs as he claims the tests are also unreliable. I made more progress in a month than I'd made in months of the previous treatments. I responded immediately to Mepron + Zithro + Septra and my Babs sxs subsided. We all repond differently to treatment, but this made a big difference for me.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Rob, That is such good news! When my LLMD told me he believed me and that he would get me better, I started crying. I had never heard anything so wonderful! It is an awesome feeling and I'm glad your experience was good! You are on your way. Posts: 460 | From Illinois | Registered: Aug 2005
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posted
Make sure you follow up on the coinfections. My daughter and I were seeing a highly respected llmd. Her bartonella was never addressed (and she tested positive), my babesia was inadequately treated.
A good llmd will take a long look at your symptom list and suspect coinfections even if yo don't test positive, but by all means you should be tested
Posts: 132 | From Kentucky | Registered: Dec 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i don't want to put a damper on this celebration...but i have never heard an llmd say s/he could cure someone 100%...be careful...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
i thought that you could be healed completly. Is that wrong?
Posts: 8 | From attleboro, Ma usa | Registered: Aug 2005
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WildCondor
Unregistered
posted
I agree with Scott, pay close attention to this. Something does not seem right. You should be tested for co-infections. the testing for them is better than the testing for Lyme disease. if you have a co-infection, and you are only taking tetracycline (a poor choice for Lyme, by the way) then you may not get any better. Why would a LLMD tell you you would be better in a month and cure you 100%? Big red flag. I know you are relieved because the doctor told you what you wanted to hear. Honestly though, I would ask more questions, do more digging, and learn more about what you are dealing with. best wishes!
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quote:Originally posted by BostonLyme2005: .No need to test for co-infects, I do not have the symptoms, and Igenex did, just waiting to hear from them.
Just what I told you would happen. So you DO have co-infection testing already at Igenex??
Please read again what Scott said. Take charge of your own health. None of us can completely rely on what our LLMD's have in store for us. We need to know all the options and all the information we can gather will help us get well.
I'm so glad you have a sense of relief! It is a great feeling, I know! At least you're on your way!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi Boston Lyme,
So glad you got such heartening news!
Tetracycline can be extremely effective for chronic Lyme.
The first time I took it, it cleared up my cognitive problems so much I was able to take my Doctoral Orals. After 4 months of Tetra, I had my mind back again, after the terrible brain fog for almost 6 years.
The second time around (now, much later, as I was afraid the Tetra would make me gain weight and so avoided it) I am herxing more than on any other abx I've ever taken!!!! The symptoms are really coming out and we are getting at it!
I have been wondering if there are others out there who want to be "Tetracycline buddies."
Be hopeful and let us know how you are doing!
Sending you warmest wishes to feel better very soon! Posts: 1066 | From East Coast | Registered: Dec 2000
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Not to damper your enthusiasm, but I got a similar speech 5 years ago and I'm far from 100%. Tetracycline was not helpful for me at all. Did zilch for my neuro symptoms and brain fog. I concur with others here about co-infection treatment. It's not something one should be complacent about especially if you don't improve from Lyme treatment alone.
Toxic metals is also something to consider when one doesn't improve from standard abx treatment.
Good luck
[ 19. November 2005, 10:14 PM: Message edited by: Lymelighter ]
Posts: 1010 | From Mars | Registered: Feb 2004
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posted
I also just got presribed tetra (instead of Biaxin/Plaquenil, which is what I expected he'd prescribe) by Dr. D. I too was told that I should be feeling better within a month and hopefully really on the road to recovery within 4-6. Dr. D never promised "cure" but did seem confident in much improvement. Many of my sympotoms are psychciatric so I have a healthy dose of skeptism in taking only tetra but at the same time doesn't everyone seem to respond differently to different drugs? Is there any real reason why some of us won't actually begin recovery with this drug (along with diet and supplements)?
Posts: 98 | From cambridge ma | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Boy, this really shows we are all different and our symptoms are different too. Nikki Upchurch said she left her symptoms behind and walked out of lyme disease and that is my goal too. I absolutely believe you can be 100% cured. After all, this is an invading bacteria/s and bacteria can be killed. I believe this LLMD must have sensed minor and maybe recent infection and therefore, believes this will be dealt with quickly and effectively. I pray the LLMD is right!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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quote:Originally posted by luvs2ride: I absolutely believe you can be 100% cured. After all, this is an invading bacteria/s and bacteria can be killed.
IF it's caught early. I think Boston Lyme's is a pretty early catch. Many here never had that luxury.
Remember this is no ordinary "infection".... The spirochetes burrow into the tissues. The abx work in the blood.
There's always room for hope and optimism.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Lymetoo. That is why my doctor did not opt to use abx to treat my chronic Lyme. He is treating it homeopathically and I am having great progress.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I felt a huge sense of relief too when I finally got to Dr. D. It was such a relief to be believed and to be asked about all my symptoms.
I think he watches carefully to see how I respond to the drugs. I believe he would treat me for co-infections if certain symptoms were not improving. Fortunately all is improving.
Tetra has been a great drug for me. When I went on it last year it cleared up my severe brain fog within days. Severe herxing came 3 weeks later. Progress continued. Slow & steady with plenty of ups and downs. I just went back on tetra a few weeks ago and it is definitely working.
Keeping a daily log helps me keep track of my progress. I particularly note when new symtoms start & when old ones end. I bring a summary to each LLMD visit.
Hoping tetra works for you too.
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by hatsnscarfs: I felt a huge sense of relief too when I I believe he would treat me for co-infections if certain symptoms were not improving. Fortunately all is improving.
hatsnscarfs
I wasn't so fortunate. After months of no progress and constant Babs sxs, I pleaded for Babs treatment to no avail. Ultimately had to switch LLMDs to get treated for Babs. Made a HUGE difference. Babs sxs that had plagued me for years went away in days.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I got the same speech from a certain LLMD years ago, that I would be all better and that coinfections were not a concern....
I got very very ill.
I finally fouund another LLMD who immediately treated me for coinfections and Lyme...I crawled back slowly, but it took a long time.
I'm also not trying to dampen your happiness.. I know how good it feels to finally be understood by a Dr...and things might work out just as you were told. But like the others have said, make sure monitor yourself and if you are not getting well to seek out more treatment.
posted
Why did the doctor tell you to stop the multis?
TAra
-------------------- Mitakuye Oysain (we are all related) Posts: 34 | From OH | Registered: Nov 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
My hubby's LLMD never promised cure.......just said he thought he could make things better and we'd see how it went from there.
It's been a rough couple of months....some progress, lately we're going backwards I fear.
I can't imagine a doctor saying you would be 100% cured in a month?
Best of luck to you though!
Posts: 1366 | From Southeast | Registered: Sep 2005
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BostonLyme2005
Unregistered
posted
Hey Guys, Please read my ad carefully, ok. I do NOT say that I will recover 100% in a month. It states that I will begin to improve in a month or so, then keep improving. There are no one month cures for this.
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posted
I think anyone who wrote you back with caution was only doing so b/c treating Lyme is so much a one step forward 2 steps back sort of thing .... and it takes time, trials and error, and getting to know your personal pattern with Lyme.
Coinfections should be treated at all costs as well.
I do hope and pray that you will make continual progress on treatment..... Best of Luck.
Posts: 437 | Registered: Sep 2004
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Jim Bayliss
Unregistered
posted
I agree that there is very little REAL 100% in anything. I have heard that you can be cured in LESS than a month, from my own family doctor. WHO told me last week that he has been bitten twice and CURED twice in THREE (3) weeks, BOTH times. AND HE WAS tested both times. HOWEVER the KICKER here is that HE took care of it RIGHT AWAY. I waited 5 months before I went to a doctor, (him), and he prescribed 24 days of Cipro. The symptoms went away for about 7 or 8 months, but then slowly, but surely have gotten worse and worse the past 5 years and since HE believes it was cured and that only symptoms can linger, he hasn't given me any more abx for it. BUT we also NEED to remember like so many have posted here, that EVERYONE is different. AND antibiotics do NOT cure everyone. Less than 85% are cured by antibiotics. (I can't remember the exact figure, will have to go back and read about that again). I had relief so think MAYBE I could be cured with antibiotics, but don't know that for sure, since I don't think I was bitten twice, at least did not have the red target a second time. So I am guessing it is a relapse. All I know NOW is that because of his reluctance to give me more antibiotics, that has forced me to look at alternative cures. And SO FAR the herbs are working wonders in this old body. I will keep you all posted in the months ahead as to WHAT is happening, exactly, to the best of MY knowledge with this hideous condition known as LYME; on MY system. Jim. PS: Does ANYONE out there know about the reliability of an Oceania based drug company, that sells some antibiotics without a prescription? Have you used them? It is called United Pharmacies. I found out about them from a Lymie here in Wisconsin, but for some reason he hasn't answered my emails on these questions. ###
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BostonLyme2005
Unregistered
posted
Its always nice to hear from all you people!
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Boston Lyme,
I just wanted to stop by and say hi and share my experience. From what I read from others here, it seems like Dr.D is your new LLMD.. If so, CONGRATULATIONS!!!!
I was a patient of Dr.D's myself for over 3 years. When I went to him I had several well meaning folks here, warn me that he would only put me on tetra and would absolutely, positively, never test for coinfections, let alone treat them.
So when I went for my appointment I was very skeptical. When I met him, all my fears went away. He held my hand and told me that he would do all he could to help me feel better and be able to play with my kids again.
That was in 2001.
And I was never put on tetra. I was put on Biaxin first, then added Plaquenil and then when my nuero lyme symptoms weren't improving, he added Minocycline. This trio did the trick and I have been off all meds ( pain meds too) for almost 2 years!!!
And I was tested for coinfections.. not once, but twice. And I was even treated with Levaquin for my bart..when the time was right.
I thank God every single day that I trusted my instincts and met Dr.D. I give him complete credit for my being able to be a mom, wife and me again.
I had probably had lyme at least 12 years ago, and by the time I got to Dr.D, I was stuttering, couldn't move my right hand, my entire right side was all but paralyzed, my memory was shot,
I was on the couch most days eating Vicodin like candy, I couldn't play with my kids and felt very alone in my search for a cure to what was making me ill. No one truly understood me.
That changed when I met Dr.D. He even asked me to step out of the room and had a heart to heart with my husband. To this day I don't know what was said, but I do know my husband quickly became my source of strength during my treatment.
And here it is over 4 years later and I am feeling great. I don't think I will ever be 100% cured, but I am very pleased with where I am today and who I am today. How many people are lucky enough to say that? So in my opinion, Dr. D had to have done something right.
Okay, I just wanted to stop by and share my story with you and hope you can gain some hope in knowing, that I am now 99% better thanks to Dr.D.
You are on your way..it can be a long road, and I WISH YOU WELL.
God Bless, ~LymeBrat
p.s. about the vitamins, my pcp and eye doc called him and I was able to take alot of vitamins. If I remember it right, he wants you to stay away from certain vitamins as the spirochetes feed off them.
I forget exactly what it was, but my old posts about it should be in the archives if you care to check it out. I know I took bilberry, vitamin e, d, b, black strap molasses, vinegar, lutine.. and several others. And I was encouraged to eat a diet enriched with foods containing vitamins as well.
Posts: 3154 | From NH , USA | Registered: Oct 2002
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BostonLyme2005
Unregistered
posted
I have my ups and downs...Like today, I am fatigued and heavy and numb/tingling legs....Sleep is still the best thing ever..Spasms are mostly gone through the day...I have only been on the tetra for just about two months now, two more months to go before I see the LLMD again.
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
100% is a good thing to hear! Good for you! So wonderful it was caught early.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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BostonLyme2005
Unregistered
posted
Yes, caught early, but it still is taking its sweet *** time!
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My PA LLMD, Dr S, says I will never be cured of Lyme. That the bacteria will lurk inside for the rest of my life, and possibly recur. I had a hard time believing that...or maybe I just can't.
Posts: 39 | From seneca lake oh | Registered: Sep 2003
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Lydie
Unregistered
posted
Foggy, I have a question for you but it is not possible to private message you. Would you mind private messaging me w/a way to communicate with you? Thank you!
Boston Lyme, Dr. D. is a great place to start and he helps many. After a year or so, you will know whether you need more from someone else. Also, he takes insurance, so you can get started (or perhaps even complete) treatment without going broke.
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posted
Rob, i totally understand where you are coming from, i just got back from a DR. P******* today in wilton CT and this guy is on the board with the ILADS and i was expecting him to do all this blood work and give me all these crazy combos and i walked out of there with a script for 1500 mgs a day of tetra, i too i guess caught it early, pulled tick off in june.6 days later started treatment with doxy, 200 mg. a day which i know now was too low but he is hopefull that the tetra will do something good for me. he told me tonight in my appt. that when you catch this days after the bite up till a years time you are still considered in the golden window and that he did not consider me chronic. who knows but i left there more confused than when i got there, but he had some good words to say, " he said that he did not want to give me false hope" that"anything was possible with this even the possibility of not being the way i remembered being" i did not want to hear this but i do understand what he means. good luck to you and i hope it goes smooth. how was the tetra for you, bad herx or what..thanks DJ
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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