posted
I was told by my llmd that i was in remission after only seven months of just omnicef. He took the advice of the lyme neuro he sent me too. She did a western at stonybook and it came back with no bands on it. She told me to stop all abx and my llmd said to coninue omincef till august when I see him again?
I stopped the abx almost a month ago now and something is doing very wrong in my body. I cannot figure out what I have or what is wrong. I am waitng for ART testing to come back to see if they can figure it out.
Each day I get dizzier and the xanax they give me for my inner ear issue doesnt help at all. I am worse than when I first started lyme treatment.
All the nerves in my body are actually vibrating. My hands and feets are tingling and I can watch the nerves in my legs jumping through my skin. I cant handle noise again and I jump up from my sleep in fear and soaked with sweat every night even with air conditioning.
I tried contacting my llmd for three weeks now through the email they gave me with no answers. I dont know whether to go back on omnicef again or not. Now I am afraid I would have a herx if I begin again? If I dont have lyme or coinfections (tested a bunch of times igenex) then what is this? I get horribly tired again in the afternoons like I did at the start.
Since I am off abx everyone thinks I am well now (remission) so I dont say anything but I cannot even walk around or stand up in my own kitchen without those brain zaps again. This feels the same as the reaction I had to rifampin.
I feel like I have a nerve down my chest that is vibrating too making it hard to breathe. No babesia is what the llmd and, lyme neuro and five other doc test said.
Any suggestions on whether I should start omnicef again (brain zaps were gone while on it and now they are constant again. I had even stopped supplements and just takig my regular BP and thyroid meds. I dont know what to do anymore. Thanx for you help.
-------------------- 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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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Consider treating for parasites which can cause some of the symptoms you desacribe. Parasites/worms are considered a co-infection of Lyme and are often overlooked even by LLMDs.
Antiparasitic herbs such as Parastroy, Humaworm,Hulda Clark etc can be very effective, but you must stay on them until symptom free.
You doctor may also consider some prescription antiparasitics as well.
The parasite testing is highly unreliable, but wiouldn't hurt to do. Use the search button at the top and type in parasites for more info.
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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My first thought is maybe you need a different doctor. Most LLMD's listen to patients and go by symptoms, not just test results.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
I had brain zaps since the beginnings, that is why he said lyme. I also have brain lesions.
I do not take ssri's, those are anti depressants right? I have taken magnesium since the beginning and epson baths per his protocol. My blood work is not showing any deficiency either. This is all making me nuts.
Carol so you think I should go back on omnicef again? I cannot believe that Dr R never got back to me. I contacted them three time via the email they gave me in three weeks and his PAA never answered them at all?
I am at the end of my ropes now. This is getting worse every single day. My feet and hands and even stomach I can feel the nerves throbbing (not hurting, just the sensation) all day and night.
THe fact that they say lyme, then say not lyme is making me wish I would just die already. After 32 years of the dizzies and now it is so bad that I cant do anything at all anymore, why bother sticking around.
-------------------- 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
Mary, Iwas tested for all co infections through igenex and stonybrook and quest and labcorp..negative on all.
The worst is just not knowing what is true and what is not.
-------------------- 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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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I have had the same things you are describing..all of them at various times.
The nerve throbbing is likely inflammation. And you say you can see the nerve jump on your leg? Are you sure they aren't small muscle twitches?
The brain zaps... are you on any other medication? Have you lowered your dose of xanax or anything? I got this the first time when I stopped taking an antidepressant. Hmmmm... weird.
In my opinion, I would restart antibiotics. And I agree with dealing with parasites as well.
Maybe you should try calling your LLMD instead of emailing. Leave a message for them to call you back.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
annier,
you have treated parasites? Did you treat also the full k protocol, biltricide or salt/C? Gael is right.
Posts: 1834 | From US | Registered: Oct 2008
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How long have you been on your present Xanax dose? Do you take it daily at set times? Have you ever increased or decreased it? Take care and sorry you are feeling bad.
Posts: 51 | From Indiana | Registered: Dec 2009
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I have been on the same .5mg 4x aday of xanax for over ten years for an inner ear disorder from major ear surgery. I did nto increase it at all. The dizziness that I always have from the surgery has been 100 times worse, that is why the LLMD said neuro lyme since I was bitten twice in four years upstate NY.
The brain zaps had stopped when on omnicef but for some reason my llmd seemed to just give up on me after seeing him since dec? He seems afraid of my ear issues and told me he felt I was in remission and my dizzies were permanent and to just keep taking my meclizine and xanax. The same thing every ENT NEURO etc tells me.
He said to take the omnicef till august when I see him (I am sure for hte last time it appears). Then the lyme neuro he sent me too called and said stop the abx that I didnt have lyme per the stonybrook testing. So I stopped it aoubt 3 weeks ago. The past week or more I get worse each day with the vibrations and now tonight my ears are screamning ringing and face is twitching.
I take methyl b12 injections two times a week even though I am no longer low in it my GP and llmd said it is good and cannot hurt me. He never mentioned parasites at all? Is this humaworn from the LLMD and is there a herx involved when taking it? I never heard of the things mentioned.
I wonder why parasites would start now after treatment with abx? I did not have these symptoms at the beginning of treatment. I just took diflucan thinking maybe it was yeast? I have totally off the inflammation diet after stopping the abx.
I am a bit afraid of the omnicef? He started me on it with only 125mg a day to start and then gradually till 600mg a day since I have bad issues with abx. Kind of afraid I will herx again even though I supposedly do not have lyme or coinfections per the neuro and I am in remission from the lyme (that I dont have) per the llmd!!
what are some signs of parasites besides vibrating nerves and ringing ears? Thank you so much for your answers.
-------------------- 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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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Google parasite symptoms and also check the symptom list at Humaworm. Intestinal parasites can cause many symptoms and create deficiencys.
They also protect the bacteria and carry fungus, yeast and heavy metals.
Really important to go after the parasites in order to get rid of the Lyme and co infections.
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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posted
Why would you be on Xanax for an inner ear issue? This is an SSRI and changes brain chemistry. Seems a little harsh.
I used to get the tremors, in fact a few times they woke me up at night and I actually thought we were having an earthquake.
Once I got my thyroid under control along with supplementing the adrenals, my tremors subsided.
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Annier~ You could have chronic viral infections. Look at the infections tab on this website, and get tested for the pathogens at the suggested labs.
My inner ear was destroyed during an ear surgery for bells palsy on my mastoid bone. Xanax or valium are always used for chronic dizziness along with meclizine. They have no cure at all for the damage they did a very long time ago so my only option to function upright is the meds. I fight every doctor on the issue but they are right that I should not be bedridden and spinning for life. I am too young for that.
I was fine with this regime most of my life until I got these 2 tick bites four years ago. Things started getting crazy. The xanax would not control the dizziness at all and I had strange panic like attacks out of nowhere at all that xanax would not stop again. Even a dose increase wouldnt stop it so I went back on my regular dose and was diagnose as chronic neuro lyme.
I was told that lyme attacks scarred areas and the surgery left my head open for attack. I am getting where any sound when I am sleeping makes me jump out of my skin. I can take noise and looking outside my window makes me blinded for most of the day..strange things..yet my LLMD said I was in remission???
I will look into the parasite issue and thanks for any input you can give.
-------------------- 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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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
The sounds making you feel like you're jumping out of your skin could be adrenal fatigue.
I had this so bad that i was certain I would end up having a heart attack in the middle of the night, due to normal nighttime noises.
This GREATLY decreased when I went on abx and started taking adrenal supps as well.
I still have muscle twitches, that and the constant "nerve" vibrations were my worst symptoms at the beginning. Magnesium didn't help with those, although I do think taking it is important.
I'm not a doctor..but it sounds to me like your Dr is correct that the surgery left you wide open for LD and co to mess with your head. It also sounds to me like you are dealing with Lyme and Cos and it is not in remission. *hugs*
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Thank you so much for your words. My adrenals are very low and both doctors want me taking DHEA 25 and coref 20 along with my armour thyroid, but I only took one of the adrenal supports after many on this forum said how bad the cortef is for lyme?
My regular MD said that my nervous system is so overstressed physically and emotionally and it shows in all my bloodwork and a stress level test they did on me. He is the one who gave me the adrenal meds and I showed them to my LLMD who agreed I should take them.
I dont feel remission anywhere in my body. I am scared and at a loss for what to do anymore, truly. I just want out of all of this
-------------------- 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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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
If you are in 'remission', taking the Omnicef should produce no reaction then right?
Even though you stopped abx, you need to stick with the anti-yeast diet and acidophillus, for a long long time to come. BUT, right now this just might be a minor contributor to your issues.
Magnesium deficiency - this is something that DOES NOT GO AWAY UNTIL FIXED. All the antibiotics in the world will not address magnesium deficiency. Oral supplements will not restore your mag levels to proper levels. And unfortunately, testing of mag at the cellular level is pretty sucky. IV and IM magnesium sulfate or chloride are the quickest way (IV being optimal). You can try using Magnesium Oil (you apply to thin areas of your skin), but it is itchy and needs to be applied often.
I'm not a doctor either, but I'd say it's too big a coincidence that all this came up after your stopped antibiotics and your test results should not have been relied on.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Digging to find out about neuro symptoms as well. Sudden onset after feeling better too...
They say to check blood sugar levels and B12 levels and other b vitamins and make sure your not taking too much B6.
Like Carols said. Maybe for not try B12 and see if it helps? DO not take anything with B6 and just make sure your not taking it without realizing it such as in multi and b complex etc. B6 I was told can cause neuro symptoms and problems.
Blood Sugar something to evaluate too..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
What is the Cortef for? It's not something I've ever taken.
As far as adrenal supplements...I went to my local natural health store and picked up a bottle.
I also suggest going back on the diet, and reducing systemic inflammation with herbs.
Do you happen to know what your last CRP level was?
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Annier,
It sounds like it's time for a second opinion from an LLMD. Very few of us stay with the first one we see. This is a very complicated illness as you know and your case is made more complicated by your botched inner ear surgery.
The treatment he has given you has been limited, never touched co-infection either and you know the tests are unreliable.
I'm sorry to hear you are suffering so.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I also had the sound sensitivity especially at night and in the morning. This is definitely adrenal. It gives you that chalkboard feeling.
I did not do well on cortef...
I started off on Pure Encapsulations ADR Another great product that does not test the adrenals at all but truly supplements without adrenal granules is Energy Multi Plex by Researched Nutritionals.
Remember.. don't expect this to cure over night... Stick with the supplements no matter what unless you breakout in an allergic reaction. You will notice a difference eventually.
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I got my ART results back from DR K's nurse. She said my DHEA/cortisol ratio is way too high? Whey would my llmd and gp say low and give me both of them to take (which i did not).
The suggestion I was given from DR K's nurse was Power adapt Adrenal support..2 dropper in morn and one at noon Rhemania..2 capsules in the morning Matrix minerals 1 cap in water bottle every day Larrea 2 capsules 2x a day.
I guess I will try to find these supps and give a try..better natural ones anyway for adrenals. I know my bloodwork is so screwed up. My D is always low no matter how much I take it seems.
I also have heavy metal issues which I have no clue how to get rid of and coagulation factors with my blood? I figure why not just give up!!!
She did say to double my magnesium taurate so thank you all for that one.
-------------------- 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
Frequent Contributor (5K+ posts)
Member # 18936
posted
If you have heavy metal issues you need to chelate it out of your body under a doctor's care. If your LLMD has not tested you or addressed this issue and the coagualtion you are wasting your money seeing him, as he surely knows what to do.
The coagulation issues also need to be handled under a doctor's care. There are various approaches such as nattokinese and other enzymes, heparin shots etc. but your LLMD should be guiding you and if he has not after all this time you should find an LLMD who is more comprehensive/integrative and will deal with all of your issues.
I'm glad you have this new recent information to work with but why is your LLMD charging you so much if he has not addressed these issues? Being on this site as long as you have, you know that they are critical to getting well. It's not just a matter of killing of spirochetes. I find this disturbing and feel he has not served you well.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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