posted
I went to Dr R today for my visit. He agrees with the neuor lyme doc Dr B in saying that my lyme is in remission after only 6 months of treatment.
He said to continue the omincef for three months till I see him again to ensure there are no strays around and to keep the inflammation down.
I am also being put on DHEA and some cortisol adreanal compound from their pharmacy to lower my stress level. I asked why I am still hurting in some areas and alot of stress and shaking.
He stated is like removing a thorn from your hand and the apin is there until the area heals. My entire body has to be rebuilt now and giving back its life. I am on a very healthy diet, all my supps, my thyroid is finally normal and my reticulytes have gone down to normal range for first time in a year.
He did some strenght test with touching vials of babs, bart, and then toxins to see if I could maintain my arm strength (not to sure I believe that one). He said it was developed by Dr K in WA?
Also, sadly my dizziness and imbalance will get just a bit better. It will remain permanent due to my radical ear surgery. I have to stay on that dreaded xanax to control it for life!
After questioning him, again, about it and all I have read on here about addication, both he, and my husband, finally yelled at me.
He stated that if he had such a horrible affect to live with and someone told him they had a med that could ease the complication, he would be taking it with no question just to live again.
He also said not amalgan fillings in my future, only porcelin and he would rather I did not get my one tooth implant due to the risk of infection. Try to stay clear of as many toxins as possible and take care of the mold in my upstate house with the house being next to a creek.
So any suggestions on getting my beaten down body back in shape would be welcome. Sad that I am "dizzy" for life, but then I was to begin with but happy that this is in remission.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Thats awesome ! So glad to hear you are better , I am praying for your continued success ! Praise be to God Posts: 198 | From Rhode Island | Registered: Sep 2010
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posted
I am not feeling great Lymetoo, but much of it is due to the serious surgery I had so it is permanent for me.
He explained that I need to heal my body now to feel better..like a thorn after you take it out, you will still hurt while it heals. Lots of nutrition and staying on supps..plus I have to keep on abx for 3 months till I see him again to be sure. I pray that some of my dizziness goes away. I know I will live on meds for life but I really want some quality of life.
I have this issue even besides lyme. I am not going to be off meds yet...3 months precaution first.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Great news! Seeing your post and signature gives me hope! I pray that the dizziness will let up at least a bit for you.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I have to wonder if you really are in remission. Simply because of your symptoms. It's not clear how much is from the surgery, but it sounds like it is more than just that.
I would not be so quick to agree. I could be wrong, but then again, I could be right. Believe your own experience more than what any dr tells you, no matter how well-known.
It's not that I wouldn't want you to be in remission, but . . .
Posts: 3771 | From around | Registered: Mar 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Glad you're feeling well.
But 6 months of treatment and lingering symptoms points to infections still present.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I hope his prediction is correct but I'm skeptical. He never even had you on a cyst buster nor were you ever treated for co-infections and your ABX doses were low. I do hope you get continued improvement.
What is he advising you to do regarding the lesions in your brain and the blood pressures issues? Some how I would want a second opinion from another LL neuro.
If you want to get your body back into homeostasis and frankly I think that is some thing he should be helping you do, you need to
get a good alternative doctor or ND. NY has lots of alternative doctors and I'd venture to say not as many ND's. Unfortunately, most do not take insurance but it's a necessary part to becoming whole again.
I hate to say this but my gut feeling is that your case is very complicated and given what the neuro said he wants to move you out and is using the neuro's dx. of no lyme to push you out the door.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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I got the same feeling that he agreed with Dr B, the neuro decision. The lesion have been found to be uncontrolled BP causing them by two neuros now so he taking their expert opinion on that one. He has the tons of new bloodwork from my GP on the controlling of my pressure. It really has been under control for awhile now.
It is my feeling, and only mine, That he may never have thought I had lyme at all and was unsue how to deal with situation. Although he did go over my symtpoms coming to him and they are all gone except the lower back (which we now have the mri that says I have bulging and torn discs..same with my knee.
My hand pain and brain zaps have gone but my dizziness is still with me. I am no longer fatigued and do not need a nap at all each dy as before.
I do have anxiety, even with the meds, but I think I have put myself into a bubble and cause the fear about going out.
After ten or more expert opinions on my surgery, there is not one that has ever has patient that had the surgery before. They all have heard of the complications and agree that it is permanent and degenerative.
I still am on abx...he will not stop them to be sure adn supplements and he added some dhea and cortisol from a compound pharmacy to lower my stress levels. He said no to the dental implant and metal fillings I am about to get and talked about toxins in everything and how bad the mold in the upstate house will be on me.
I had something happen after teh rifampin issue that had me feeling better only on omincief. He said that people can absolutly get better on one abx when I asked him and every case of lyme is not the same. He does not see any signs of co infections at all, thank God.
I pray this is all true and thank yoiu to those who are happy for me and also for your concerns. I surely will keep on treatment and listen to all you guys have to say..
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
I am extremely happy for you to be in remission!!!!
but I must say something I'm not trying to negative, but he was my llmd andhe said the same thing to be I me Verbatim, the whole thing about the thorn and the same testing and you know what else my symptom was still there dizziness! My first and only one that never budged. I did two plus years of on and off treatment with him and was told I was in remission twice.
I am now seeing a new LLMD and have tested positive for a whole slew of coinfections through Igenex (he never tested me for them) and I am receiving what I now know to be more complete and thorough treatment addressing everything.
As far as muscle testing I dont necessarily believe it works for everything I was negative according to muscle testing, but truly I am not.
This is my case and of course may not be yours.. .I just wish someone told me this the first time I thought I was in remission I might not be in a worse place now. Just be careful!!!
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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posted
Geet can you pm me and tell me who you are seeing. Did he treat you with anything but one abx Dr R I mean. Did he also keep you on abx after telling you that you were in remission. I was tested for all coinfection twice through igenex and they were negative?
What one were you positive for that he missed? Were you lyme positive through igenex CDC? I was negative on that twice also. I am really confused now.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Not to rain on the parade but - I would get a second opinion before accepting the diagnosis that I am well, time to quit abx and my remaining symptoms are residual damage. Boy, does that sound familiar!
Dizziness is classic babesia. I have inner ear damage and had vertigo for two years because of it. Naturally I thought my dizziness was just a return of this. It wasn't.
If only I had paid attention and treated the babs symptoms sooner rather than later.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
No problem, my parade already has rain lol!!! My vertigo is not recent or after my tick bites. It has been 31 years since a radical head surgery that caused a permanent complication.
I lived with that issue on medication for all these years and worked a crazy NYPD job. But the last two years things started getting weird. The meds no longer controlled the imbalance. I was having weird anxiety like feelings waiting for the subways in NYC and had to hang onto the subway polls cause I felt like passing out or falling.
This was more than my normal dizzy issues. I called them brain zaps and those have cleared with my treatment, thank God. I was negative for babs, bart and otehr coinfections and lyme all through igenex.
I am planning now on getting another opinion again (about ten doctors for dizzies now). I am deciding on DR K since eh is neuro lyme and I have issues with my inner nerve from the surgery or DR H upstate here who is just lyme. Tough decision and I am so depressed!!!
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't think you have to make a conclusion as to whether you are well or not at this point. You are still going to be on antibiotics for at least a few more months.
I would just see how you feel during these next few months. If you seem okay, then you can stop antibiotics and see if you relapse.
If all thats left is vertigo once you stop antibiotics then it probably is not related to Lyme Disease.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
That is all that I have left right now suthern and he is keepig me on abx for a year total to be sure and starting adrenal support since mine is so low.
My daughter and hubby say pay for a second opinion now. This all can make you insane for sure in the end, cant it? If you were in a pych ward before you surely will be in the end. Thank you for your supportive words...It helps me to breathe easier right now.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Annier, I just saw how you got bombarded and I felt bad for you. All you can do is take it one step at a time. And you are doing that.
Don't let yourself get too upset at this point. You are still taking antibiotics, nothing is changing right now. You may feel totally ready to get off antibiotics in six months. Take it one day at a time.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Much love to you sutherngrl. You have made my weekend as i always try to take one day at a time....
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Casper..you finally made it. Welcome to lymenet...i sent you a PM..should be flashing on top of board when you sign on for you to click on.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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