posted
I went to see the lyme neuro today. She gave me a three hour check up and siad the brain lesions are like small strokes. Arteries have collapsed due to high blood pressure that is uncontrolled and family history of it. She said I may have had lyme or not, but five months is enough treatment on any abx for it and I show no signs of lyme now
She looked over the igenex and my mri results. She took more blood to run a lyme peptide? and sent it to stonybrook to double check? She said that I have had enough abx. ON exam, she said I do have cognitive issues still but from the damage due to lesions.
SHe said if I truly do strive to go back to work then I can try some IV abx to see if it helps me cognitive deficeits but she seriously doubts it.
Again, my whole dizzy life is put down to a mastoidectomy surgery in 1979 that has totally destroyed my life and will get progressively worse as I age. This is what I was told by all ENTs, neuros and my regular GP to begin with and I was granted SSD for this reason just now.
I will see my LLMD next week and see if he suggested me stopping abx since it seem they are all undecided if I ever had lyme to start with. Being on only omnicef any longer seems ridiculous anyway. Knowing that I am steps away from a massive stroke like my dad, and his brothers died from is the most scary thing I have been through.
This all makes sense to me now and seems like the truth. SHe is a wonderful Neuro doc and hit everything right as I feel it.
-------------------- 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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METALLlC BLUE
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I was on antibiotics for 7 years, including IV Vancomycin, and I then had a repeat Igenex test done. My IgM had 7 positive bands, and my IgG had 4.
My Elisa test was IND, which means it was neither positive nor negative. And IND with a positive Western Blot is considered positive by most physicians who treat Lyme Disease appropriately.
So, I guess Lyme Disease "can" persist beyond 5 months, don't you agree? Let's not forget that I also have Herxheimer Reactions everytime I use Doxycycline or Tetracycline, and they happen at exactly 10 days, and last for 2-3, and then I begin to feel better.
That may not be proof, but it sure does sound like a lot of other patient reports here on Lymenet.
-------------------- 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
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posted
I think we're dealing with an infectious disease that when exposed to antibiotics, protects itself by changing form, and sequestering itself inside non-accessible areas to antibiotics, when something threatens it's survival.
I think we're dealing with an infectious Disease that persists because of this very simple mechanism, which is one of about 10 that it possesses to avoid termination.
So, keep all this in mind, especially if you had bands show up on your Western Blot that indicate infection.
-------------------- 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
My first western blot had not bands and neg co infections. The second one after two months of abx was still neg but had some IND bands.
The neuro lyme doc did a new C6 lyme peptide test today? It is being sent from columbia to stonybrook for results in three weeks. She did say that my cognitive issue many need some IV abx (if I plan on going back to my job as an accountant) I may want to give it a try but we will wait to see results of testing.
I have never been so confused before. She is lyme literate and works with a well know LLMD fro ILADS. I feel she is correct on the brain lesions since my family history is of strokes and I do have to get my blood pressure under control. I have always been on meds for this but still something is going on in my brain and my vessels are collapsing (scary).
She did state that many get tick bites and never develop lyme (which I know) and she feels that 90% of my vertigo and imbalance is due to the severe surgery I had. Even my regular LLMD and Gp believes that one. The surgery was "barabric" as they all put it and did permanet dameage to my balance center.
She made a chart of symtpoms before lyme treatmetn and after. I had only dizziness before and since abx I cannot move my muscles, and have many more syptoms that she is putting down to having too many abx.
I need help so bad. I am so confused. She suggestd that I stop all abx now and see how I feel with my muscles and I get my pressure under control first and foremost before a major stroke.
Did anyone hear of this peptide lyme test that I took and if it is reliable at all?
-------------------- 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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TF
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posted
I just researched the peptide test on line a little. It is looking for lyme antibodies, the same as the Western Blot. Only, it is doing it in a little better way that has a chance of catching any strain of lyme out there.
Still, it is not a test that looks for the lyme bacteria itself. It is looking for antibodies. So, if your body is not making antibodies to lyme, you will get a negative peptide test and actually have lyme.
Same problem we have with the Western Blot and all other tests that look for antibodies.
The sickest people often don't make antibodies to lyme anymore.
I am so sorry that you got this news today. However, if it makes you take action to reduce your blood pressure and thus avoid ever having a major stroke, then it was wonderful that you learned this.
My father, both his parents, and all of my father's brothers and sisters died of strokes. 6 children in all. My father had at least 12 strokes before he finally died at age 78 (including one while driving on an Interstate highway, causing him to drive so close to another car that his side mirror hit their mirror and they then took steps to get him in an ambulance). So, I know what it is like to have this run in the family.
I don't have high blood pressure, thank your Lord, but I know that it cannot be ignored if you want to live.
Please work on getting the blood pressure down to a safe range speedily and let us know how it goes for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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dmc
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posted
look into CCSVI - may explain your lesions and brain fog. ...found I had narrowing & had procedure. (my Right Jugular didn't "take" and is back to being collapsed.)
posted
TF...thank you for the support. I have been on toprol xl for my BP for years but this lyme neuro wants it to be even better monitored. She got 140/80 for my bp and I said "wow thats the best its ever been!" She said no way..that is still too high?
I have been so far as 170/106..normal for me is 150/90 each day while on meds. I think I may go back to my cardiologist and have him take charge of my BP from now on.
I am very concerned on the stopping all abx now diagnosis. So confused that she somewhat feels this was not lyme and only permanent degeneration of my balance nerve due to that head surgery in 1979. All doc have said that it will get worse and worse as I age and they cannot repair such a surgery. Yet my LLMD said it was lyme (although he did agree that they never ever should have done a mastoidectomy on me).
Who to believe? My CD57 is normal..igenex is negative and all other types of lyme titer have been negative too? The neuro says if you even did have lyme you are fully treated after 5 months on omnicef and should stop asap with abx. This is the lyme literate neuro that my own LLMD sent me too? So what to do?????
I took my abx today in fear of stopping them. I wish there was an answer one way or another. I really do not want to make my own body toxic by taking these abx if they are not needed, but afraid not too. HELP!!
DMC I have my neck, heart and head arteries checked by sonograms all the time and the neuro did it again yesterday due to my family histroy of strokes. SO far, all clear and good except for the collapsed vessels in my brain now (she says due to BP being so high..same as TIA's)
-------------------- 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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dmc
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posted
Annie, its the VEINS that are defective, not the arteries. When the veins (jugulars)are not open properly the blood & toxins in brain do not drain.
They are theorizing that iron deposits (toxins) are causing lesions.
Good luck, hope you find some answers.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Rumigirl
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posted
The neuro DOES NOT sound very Lyme Literate in my opinion. There are hardly any around. Although I do know of one in CT. Take the one good thing she said, and disregard what may not be
true (that you don't or never had Lyme, and that 5 months of one oral abx should be enough). Any good LLMD would know that to be not true!
Go back to your LLMD. don't just go off your abx from what she said.
Posts: 3778 | From around | Registered: Mar 2008
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METALLlC BLUE
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Yeah, tell me the name of this Neurologist and I can tell you whether they are or are not Lyme Literate. PM me the information if you wish.
-------------------- 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
metallic..i sent their names to you PM..thank you
-------------------- 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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METALLlC BLUE
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Ok, I know the woman you were sent to. She is in-fact very good. Now the issue of who to believe isn't really a problem if you think about it.
You can always come back to antibiotics at a later time if Lyme is reconsidered again, right? So see if treatments work as you go forward and just keep Lyme Disease as a possibility in your mind.
Let's face it, Lyme isn't the only disease on the planet, and you're working with very good people, so let them continue to investigate. Either way you're going to feel like **** since it sounds like this wasn't some overnight event.
-------------------- 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.
Thank you for responding. I have been twisted in my thinking since seeing her this week. She was so incredibly patient and thorough in testing me. She explained every little thing so that I understood it.
I did not get this at all from my LLMD DR R? I was never examined at all, just spoken too. I have to see him this week and I am going to mention what the neuro told me and pray he does not get angry or dismiss me. He is the one that suggested her to begin with?
I have a history of a very destructive surgery done for bells palsy and for 30 years I have heard there is nothing they can do to reverse it and that this surgery should never have been done..even the LLMD said so. Dr B, the neuro said in all her years 35, she has never heard of anyone having this surgery. But she did tell me that the damage is progressive with age.
I was looking at lyme for an answer since I have two known untreated bites in dutchess county. Maybe I was just longing for an answer? She ran a peptide lyme test to be sure. I will call her in three weeks to see what it says and go from there. For now I am afraid and still on abx.
I pray that I do not have a massive stroke like my father had. He also had unknown TIA's before he passed from a major one. Same with his brothers. I dont know whats more frightening..lyme or the risk of a stroke??
-------------------- 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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You mean toxins closed up my blood vessels in my vein and not my high blood pressure?
Toxins from what? I want to understand what you are saying but I am confused. Thank you for helping me wtih this. Ann
-------------------- 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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METALLlC BLUE
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posted
quote:Originally posted by annier1071: Metallic
Thank you for responding. I have been twisted in my thinking since seeing her this week. She was so incredibly patient and thorough in testing me. She explained every little thing so that I understood it.
I did not get this at all from my LLMD DR R? I was never examined at all, just spoken too. I have to see him this week and I am going to mention what the neuro told me and pray he does not get angry or dismiss me. He is the one that suggested her to begin with?
I have a history of a very destructive surgery done for bells palsy and for 30 years I have heard there is nothing they can do to reverse it and that this surgery should never have been done..even the LLMD said so. Dr B, the neuro said in all her years 35, she has never heard of anyone having this surgery. But she did tell me that the damage is progressive with age.
I was looking at lyme for an answer since I have two known untreated bites in dutchess county. Maybe I was just longing for an answer? She ran a peptide lyme test to be sure. I will call her in three weeks to see what it says and go from there. For now I am afraid and still on abx.
I pray that I do not have a massive stroke like my father had. He also had unknown TIA's before he passed from a major one. Same with his brothers. I dont know whats more frightening..lyme or the risk of a stroke??
Dr. R doesn't get angry. You'll be just fine. You'll get appropriate treatment eventually, they just have to sort out what the entire picture is. If you need more antibiotics, they'll circle back around to it. They're all very good physicians. The stroke issues can be worked out I'm sure.
-------------------- 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 know Lymetoo, and she looked at the WB but explained how the tests change due to antibodies after abx and even while on abx. She said it does not mean a person has lyme. Antibodies are drawn out for many reasons when give abx?
She made total sense when she explained it. I will ask Dr R what to do. I always felt that he was unsure of the lyme diagnosis due to my surgery issues. Why else would he just keep saying stay on only omnicef and nothing else all this time. ITs been five months already? I left another email this week and still no answer from them> I have appt next thursday to see him again. Was gonna cancel but I may go one last time to see what he has to say. I didnt stop the omnicef..I am too afraid!
-------------------- 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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METALLlC BLUE
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quote:Originally posted by annier1071: My first western blot had not bands and neg co infections. The second one after two months of abx was still neg but had some IND bands.
What exactly were the bands?
-------------------- 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
Mostly dizziness and off balance. I have some aches and pains but recent mris showed they are from spinal disc bulging and degeneratiion of my knees from AGE lol, as they told me. I have cognitive issues that seemed to be creeping in but now they foudn the closed vessels in my brain.
My first igenex was IGG 41+ IGM 41+ and 58 IND..co infecs--negative
Two months later igenex said IGG 23-25 IND 30+ 34IND 39IND 41+ 58++ IGM 31IND 39IND 41+ 58+
-------------------- 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
Since on Abx I now have bad weakness and pain in my thigh muscles. I cannot get up anymore without horrible pain and feels like ;they are tearing. and fingers and toe numbness since I had that bad reaction from just 2 pills of rifampin that has yet to leave me...
-------------------- 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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Another lyme patient just got in touch with me via phone and told me that the neuro DR B that I saw was the worst one out there! Back to the confusions again?
I was told by two very seriously ill lyme patients that they were to see her adn one even admitted to that hospital and nearly died from lack of treatment for serious brain issues from lyme. They said she used her whole grant to research AIDS and travels abroad for this reason, not lyme.
Their last word to me was "if you want to see her then you want to see a funeral home." I am wondering why my LLMD would suggest her for a second opinion on brain lesions? I was given a regular neuro that is right near me in queens to see that understands lyme and take insurance. He comes highly recommmeded too.
Guess I am making a fourth appt now for the same issue..Does this happen to everyone out there??
-------------------- 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
The way I see it, there's no way someone would have such terrible herx reactions as you have, and not have infection. That is part of the diagnosis in itself.
You had the same things happen that I did on Rifampin. Extreme numbness, felt like a seizure, tongue rolling back, and everything. But I'm supposed to assume that while mine was a severe herx, yours just HAPPENED to be a multifaceted drug reaction with the exact same symptoms? I can't believe that.
I once went to a doctor who explained things so well and eloquently, that my family almost refused to take me to my Lyme doctor. And since I was so sick, they were my only way to get there... Luckily they took me in the end, and I'm alive!
After four tries, I have finally found a WONDERFUL neurologist. And he admits that most of his chronically ill patients get better on antibiotics than on steroids, for "some reason." But he doesn't fully understand Lyme, so he makes assumptions based on data that are outdated or just plain wrong. They can be great doctors, with adequate explanations, but I wouldn't take that and ignore the reactions you've had to your antibiotics. They are telling you something.
It doesn't matter that you've tested negative to all coinfections. I've tested negative over five times for EVERYTHING and I was still slowly dying, and now am improving on antibiotics. You have to do what helps you. And we're all just scared that by ignoring something that could very well be there--if your herxing is anything to go by--that you may be risking further damage.
(I've had the thigh pain issue, too--feels like you've torn a muscle but you haven't? Maybe ask for Fioricet, it really helps with it.)
If you do stop antibiotics for several months and start to decline, you'll know you have a problem (even though your doctors will probably attribute it to age).
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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METALLlC BLUE
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posted
quote:Originally posted by annier1071: Mostly dizziness and off balance. I have some aches and pains but recent mris showed they are from spinal disc bulging and degeneratiion of my knees from AGE lol, as they told me. I have cognitive issues that seemed to be creeping in but now they foudn the closed vessels in my brain.
My first igenex was IGG 41+ IGM 41+ and 58 IND..co infecs--negative
Two months later igenex said IGG 23-25 IND 30+ 34IND 39IND 41+ 58++ IGM 31IND 39IND 41+ 58+
I'm not a specialist but if I saw this pattern and "I" was treating patients, I would consider this a case of Chronic Lyme Disease.
Not that this matters much, but I thought you should know. Whether other issues are complicating the situation -- well I'm sure there are because Chronic Lyme Disease seems to victimize the individual by attacking their predispositions genetically.
If someone has a family history of Crohn's Disease, but they never had CD until they got Lyme, it's often the Lyme causing it. If they never had Schizophrenia, had a fmaily history and then got Lyme and suddenly that was the overwhelming psychiatric pattern, again, I'd attribute it to Lyme.
In cases like this, I usually note that it's important to treat the predisposition almost exactly as you would assuming Lyme Disease weren't present, except in the case of autoimune diseases -- it is best to try to treat them with therapies that doesn't systematically tear down immunity.
So, listen to the Neurologist, Listen to the Lyme Disease specialist. I don't think these issues are mutually exclusive. Focus on the entire picture. Also, co-infection testing is absurdly inaccurate. Just keep that in mind for future consideration. A good idea that I've often recommended is testing for RMSF, or Erhliciosis by standard testing methods, like Quest, Labcorp etc. These tend to be "better" co-infection tests than those for Babesia, Bartonella, and many of the others. If these do show up positive, it can provide a big clue and provide substantial circumstantial evidence to supporting the original Lyme Disease diagnosis (although it's still indirect).
-------------------- 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:Originally posted by annier1071: Metallic
Another lyme patient just got in touch with me via phone and told me that the neuro DR B that I saw was the worst one out there! Back to the confusions again?
I was told by two very seriously ill lyme patients that they were to see her adn one even admitted to that hospital and nearly died from lack of treatment for serious brain issues from lyme. They said she used her whole grant to research AIDS and travels abroad for this reason, not lyme.
Their last word to me was "if you want to see her then you want to see a funeral home." I am wondering why my LLMD would suggest her for a second opinion on brain lesions? I was given a regular neuro that is right near me in queens to see that understands lyme and take insurance. He comes highly recommmeded too.
Guess I am making a fourth appt now for the same issue..Does this happen to everyone out there??
Yes, this often happens. These misunderstandings of what a doctor does and doesn't specialize in, beyond their main speciality can complicate issues.
I think we might have some misunderstanding here. When I said she was good at what she does, I didn't mean she's good at dealing with Chronic Lyme Disease. She's a fantastic Neurologist, who happens to be "friendly" to the cause of Lyme patients but she is by far not someone I would listen to when it came to discontinuing or continuing my therapy for Lyme Disease.
Do you understand? I would not recommend following her information on Lyme Disease, but I would consider the significance of her statements about your neurological status.
If I was you, my main focus would be on Dr. R, and expressing to him what you were told and what you believe (or think is possibly) going on. Your symptom history and profile are what make this case. If he says stay on antibiotics, I would. If she tells you to pop aspirin or use an anti-stroke therapy, I would investigate it, talk to Dr. R, and I'd see if it would interfere. If you want to see a Neurologist who specializes in Lyme Disease, there aren't many, only about 4-5 in the country that "specialize" in the illness, she is not one of them.
The same is true of Neurologist Dr. Y in New York state. I would never recommend a patient follow his advice on treating or not Treating Lyme Disease with antibiotics. His specialist is small nerve fiber damage investigation, autoimmunity and IVIG therapy, which just happens to help Lyme Patients sometimes and is thus the reasons some LLMD's recommend him.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
In a recent post from GiGi, she states that at Dr. K's Beyond Lyme conference, he says that PARASITES are what does us in...Lyme is secondary because the parasties/worms are carrying the bacteria, viruses, mercury and fungus in their coats.
I totaly am in agreement with this from personal experience. Going after the parasites saved my life after 4 yrs of abx tx and still being sick. Do a search on here under parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Abxnomore
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posted
You could very well have lyme and high blood pressures issues that need serious treatment and it's possible to have both issues.
I'm not sure I totally buy her assessment given that I think you said the ABX helped with your brain zaps and the zitho increased you joint pain. That sounds like a herx to me.
Best to talk with your LLMD and while it's expensive and tiring you may have to make a switch in neuro's and get a second opinion from Dr. K, the neuro and possibly even a new LLMD.
Hopefully, Dr. R will be helpful but if not you will have to keep on searching. Most of us have been through this. It's like we have to be a medical detective and figure out for ourselves what really is going on.
I hope after seeing Dr. R you get a better feeling about what is going on.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Thank you all for you words and suggestions. I have an appt with Dr R thursday and going to see what he says. He is aware of my high blood pressure that went insanely high with rifampin and he did stop it immediately.
I cannot imagine either that the reaction I had on that drug was from a drug allergy. I have to agree with my llmd that it was a very severe herx affect. I do not feel that a drug would cause every nerve in my body to go insane and non stop tremors for a week. I am still dealing with the twitching eyes a month later and that was with just 2 pills and stopping them.
To date, i have left many emails to the LLMD office about being just on ominicef and they keep saying to stay only on the one. I think my blood pressure and past ear surgery have them being very cautious with me.
Yes the neuro was excellent in her field and told me more about my past surgery than anyone I have ever been too. She cannot repair the damage done but gave me suggestions on easing my eye and neck spasms due to the surgery. I do not think she understands lyme well enough though and I did not take the advice and stop my abx. I will wait to hear from my LLMD.
-------------------- 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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Abxnomore
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posted
Annier,
I think your approach is a very objective and sensible one.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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