posted
what was your situation and what was your medicine that helped?
I have EVERY symptom in book, (seizures, vertgo, CNS issues, you name it), and going downhill fast. Please help me by telling me what your protocol looked like?
I need to know that this can be treated. Any success stories out there with antibiotics?
Everyday I think is my last. Ive thought about ending it many times. Sorry to sound so negative.
posted
I had visual disturbances, vertigo, brain jolting, etc. after 2 months of orals most of those are gone or minimal. I still have major mental disconnection and memory loss is pretty severe but just grateful to get rid of that **** (for now). It can be treated hang in there.
still have emf sensitivity though, store lights, computer terminals at work send me back there a tiny bid.
I will PM you my protocol.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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posted
The best and fastest way is with IV Rocephin. Unfortunately, nothing works immediately. And results vary person to person.
My friend had undiagnosed Neurolyme for 12 years. Once it was diagnosed she was put on IV rocephin. She's also on azith.
However, after 3 months she didn't show significant improvement. She has been given another 3 months. It may take a year.
An anti-seizure treatment may help with the symptoms. Many of her problems come from seizures of different types.
Hang in there, keep fighting.
James
Posts: 872 | From New York City | Registered: Jun 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I had severe nuero issues...I took a combo of orals for about three years. Zithromax helped a lot as well as Flagyl, Minocycline and Amoxicillin. More than likely it's going to take many rounds of many different types of antibiotics to clear the brain stuff. Rife machines are excellent for nuero Lyme too.
Are you seeing an LLMD now? Are you on any antibiotics? Please hang in there, okay? I KNOW it's hard but you will get better, it just takes some trial and error and a lot of persistance.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
I saw Dr. C in MO but he just gave me oral doxy 50 mg. then he switches as long as your not getting better. But his protocol is one med at a time. I think I need IV but I think it would kill me cause I've had this for years and the herx would put me in the hospital. I'm so desperate.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
You really need a good llmd first to work with. Hope you can get one.
IV Rocephin is a good start for neurolyme, but it is also possible for patients that can tolerate it to use high-dose amoxicillin. I am an average to small sized person and worked up to about 13 gram/day of amoxicillin for neurolyme.
Start slowly by working with a good doctor, and you can get better. I have met several people who had severe neurolyme and were unable to walk who now are functioning and living well.
It requires alot of persistance and patience because it is not a quick fix, but it can be done. Hang in there and let us know how it goes.
Posts: 2557 | From home | Registered: Aug 2006
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Back in March 2009, I thought I wasn't going to make it. I filled out my Advanced Medical Directive, was getting ready to go to bed, sitting on the couch with my husband, crying and saying goodbye because I did not believe I would see another day.
At that very moment the phone rang. It was my sister telling me of an Infectious Disease doctor in another state who helped her friend with IV Rocephin who was really bad off. At this point I never knew what an LLMD was.
My Primary Care Physician made a conference call with this Infectious Disease doctor, and after talking to him my Primary Physician made the decision to put me on IV Rocephin.
I am thankful for the phone call I received that night. I thank God for the IV Rocephin that was used to save my life. Today I am seeing an LLMD seeking further healing and recovery.
I share this story, not to recommend Infectious Disease doctors (I tried getting help from the ones in my state), but to share hope that you can receive the help you need. Sometimes the help we receive is in unexpected ways.
If you are having seizures then my non-professional opinion would be IV antibiotics. Maybe consider seeing a doctor that is closer to you.
Wishing you the best and praying that help will be found very soon.
Hugs, Morningsong
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Okay 50 mg is a laughably small dose. It really ****es me off when I hear of "so-called" LLMDS treating people with such low doses.
That small of a dose wouldn't be appropriate for someone who'd only been infected for 2-3 weeks, much less for someone with a systemic brain infection. Please find a new doctor. You should be on FOUR times that amount plus at LEAST one other antibiotic with it. What about co-infections? I'm guessing he doesn't really treat those either...
I'm PM'ing you the name and number of an excellent LLMD that is actually a little closer to you. He deals in much higher doses, treats co's based on symptoms, and will even put you on I.V. if that's what you want. He's also affordable and accepts insurance.
There are several people here who see him. I USED to be one of his patients - and I'm now one of his success stories! I haven't seen him in over 6 months because I haven't needed to - I'm well today and living a normal life because of him
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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IckyTicky
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Member # 21466
posted
I've had Lyme probably my whole life (I'm 31) and started having neuro issues over 6 years ago before being diagnosed.
I have been the most helped by Zithromax. I have only been on oral abx, mono-therapy for just over a year now. I had muscle twitching, involuntary limb movement, brain zaps, little buzzes all over, tingling, neuropathy, RLS, TMJ, pain in my brain when I moved my eyes, sound and touch sensitivity galore, weird seizure-like episodes where my brain seemed to blink off and on, dramatic fight or flight response to every little noise, racing heart, palpitations. You name it I probably had it. I am feeling over 80% improved.
I get my abx switched to something different every few months. But Zith definately was the one that started my neuro recovery. Compared to a year ago, when I was sure I was going to die at any moment, I am SO much better.
Everyone is different and responds differently to abx. Other therapies work along with abx too. Don't lose hope.
-------------------- 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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posted
The reason he wants to start slow is cause I've had this a long time. Years! The IV would probably kill me from the herx. I took 3 doses of Doxy and thought I would die. I've just never heard of just doxy helping with neurolyme.
posted
her llmd is one of the BEST IN MIDWEST; so please don't put down what you know nothing about folks!
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lymielauren28
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Member # 13742
posted
Betty I'm not putting him down - I didn't call him any names - I'm speaking my own opinion that that's way too low of a dose for anyone. Many others have had the same complaint about this particular doc...
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Lauren is correct. His treatment protocol is not helping him at all. He does not even live in the mid west so I don't know why is he going all that way when he is feeling so ill and there are plenty of LLMD's on the west coast.
There are many of us that have been misdiagnosed for years but don't start off on a dose lower than a child would take.
Brandimc, we have all given you very good advice in a previous post. Make a decision about what to do but don't just complain and deteriorate while not exploring other options because there are other options out there.
Much of this illness is about finding the right fit, doctor wise.
You can PM me, if you need help.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I'm not complaining, just trying to find out more about it. I have 3 small children, all born with it, and I'm desperate to learn more before I go through I herx. I've had this years, but have deteriorated this past 3 months. Ended up in er 3 times. Living in texas, it's hard to get good help. But I appreciate all ya'lls feedback. thank you.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Brandimc I'm sorry for your dilemma. You have a very difficult situation. One can not avoid herxing, I don't think. If you don't kill off the spirochetes, you won't stand a chance to get better.
Please consider going to an LLMD that is closer to you. There are many good ones on the west coast for you and possibly for your children.
PM me and I can help you with LLMD's names.
The word complaining was a poor choice and I am sorry I used that word. But since you are so very ill we would all like to see you get better treatment and closer to home.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Some people need to start slow and gradually increase doses of meds.
Other docs start off with very high doses of multiple meds. I call these the blasting docs.
There is no right or wrong way in my opinion.
Hubby has been to many docs and done IV's, monotherapy with oral meds and multiple oral meds (up to 5 at one time). He has done herbs only and gone for several months without any antibiotics several times over the years due to either lack of funds or being in between docs.
I have been the one who had to make most of the decisions regarding meds and docs because he was just too sick. It has been a learning process. What has worked best for him was starting slow and gradually increasing both the doses and the number of meds.
Once he had his symptoms somewhat under control then we switched docs to try to get at his coinfections better.
No one doc has all the answers and no one approach works for everyone.
Hubby has been in almost too many ER's and hospitals to count. Even going slow sometimes there are complications.
In my opinion if you are herxing then you obviously have Lyme or some sort of infection. If you had unlimited dollars and could devote 100% of your time to healing then you might be able to get well in a couple of years. But if you need to be able to funtion while treating it could take twice as long with lower doses. But either way is a battle.
It is important that you have confidence in your doc. Only you know your financial situation and what your body can tolerate.
Personally if I had it to do over again I would probably have tried hubby on the Buhner protocol first before doing any antibiotics -- but that book was not written when we started on this journey.
Hubby's first antibiotic was IV Rocephin -- I was trained to do the IV's myself. I had to stop just about every single IV one or two times to give him IV Ativan for seizure-like spells. None of the oral seizure meds we tried helped.
The Rocephin decreased his symptoms by maybe 25% but within a week of stopping the IV's his symptoms started coming back. So IV's aren't always the answer for everyone. And yes, we have done other IV antibiotics that haven't been much more helpful.
In my opinion the most critical aspect of treatment is actually identifying the other infections your body is fighting. You need to know what coinfections you have and treat those. Also viruses and parasites if they are present.
There are no quick fixes unfortunately.
Best wishes.
This is not medcical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
IM in austin texas, but staying with relatives in KS. They don't understand, NOBODY gets it. THey won't let me start treatment cause they aren't ready to take care of me. Losing the ability to walk, see, hear, having pain in my brain.
Seizures are mostly going to sleep and waking up. Taking neurotin.
posted
IM in austin texas, but staying with relatives in KS. They don't understand, NOBODY gets it. THey won't let me start treatment cause they aren't ready to take care of me. Losing the ability to walk, see, hear, having pain in my brain.
Seizures are mostly going to sleep and waking up. Taking neurotin.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Well this certainly makes things much clearer. Unfortunately, most family members don't get it.
I don't know what to tell you. I went thru treatment alone. I was difficult and scary. May be you should just start rather than continue to deteriorate. You will probably be spending most of your time in bed any way.
What choice do you have? Better to just get started and see where the chips fall. You seem convinced that you will have the herx of a lifetime. Every one responds differently. You may not react to treatment as badly as you think.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Don't let the fear of herxing stop you from starting treatment.
A good llmd will know how to start you in getting better.
The disease itself is always much worse than herxing I have found, and I have regretted every time fear of herxing made me delay a new treatment.
Posts: 2557 | From home | Registered: Aug 2006
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posted
High dosing and aggressive IV antibiotics (6 different ones over 9 months) pulsed and swtiched up often in combination with orals, detoxing and supplements.
I went from about 20% to 80%.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Brandi, all the others are correct - deteriorating from Lyme is far worse than any herx could ever be - in my humble opinion herxing is way overrated.
Herxing certainly isn't fun but I've always found them welcoming in a weird way. If I'm gonna be sick and feel like crap I'd much rather it be from a die off reaction than from spirochetes running rampant and unchecked through my body.
As Abxnomore said, there's no way to avoid herxing when you have Lyme but there are many things that you can do to reduce your herxes and make them tolerable. I cannot stress detoxing enough - simple inexpensive things like lemon water, green tea and epsom salt baths can make a world of difference.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Brandi, I agree with Lauren. Herxing is much better than letting the lyme progress. I have always had serious neuro issues.
When I accidentally got septicemia and was in hospital for 6wks getting 2 abx by IV daily, I got better! I walked out of hospital with my speech ok and most symptoms better.
But I must admit that the herxing was not fun. It helped being in the hospital. No docs realized I had lyme...they thought I was just sensitive to the meds. Those idiots did not even give me any probiotics! Those are helping me a lot now.
More recently I have relapsed. One doc tried doxy without results. So I got to a good LLMD. The two abx are important. Don't waste any time getting to that new doc!!!!
You can PM me anytime and I will reply. Don't even think of giving up! There is a way through this and you will find it.
Farraday
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would say it is correct dose if you have to care
for others. Any more you will most likely be in bed. While considering many start with a higher dose
that does cause hard herx. Will it do any good?
Will it cause it to go to cyst more?
Will it take longer?
Yes, who knows, and probably.
If you could find other options for help, medical
aid, support, then I would go with what you can tolerate.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
The reason I was afraid of the herxing is cause I've had brain swelling and my heart freaks out, I feel like my heart is skipping beats and for my seizures. I would do anything not to have more of those. Last night was rough. My lungs feel like they are having trouble working. didn't get any sleep. thanks for the input.
posted
Brandi- Before going on IV Rocephin I had difficulty breathing to the point I went to the ER 3 times, also had heart palpitations all night -- the same you are going through.
I know from experience that this can be a very scary time. But getting treatment will help. Please dont let fear keep you from moving forward to get the help you need to heal these symptoms.
Having seizures is serious. You can make it through this if you get the needed help. Please get help today.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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I did get brain swelling and spiked a fever at one point while on it (it was a herx but my doctor pulled the picc line, on the off-chance that it was a line infection).
I saw the greatest improvement while on the IV (2 months Rocephin, 1 month Cefotaxime). I can't recommend it highly enough.
For me, the orals don't seem to do much(undiagnosed for 10 years, and have had Lyme for 13 years now, very neurological with heart palps, dystonia, dysautonomia, etc.).
I'm trying to see if I can get back on the IV. It works the best for me.
Good luck!
Posts: 366 | From MA | Registered: Apr 2006
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posted
My doc won't do IV's cause I live in texas. Texas has a rule that docs outside of state can't prescribe IV's. So, in order to get IV's I would have to move somewhere, obtain permanent residency, and get a local physician to administer them. Who has time for that? I found a doc in texas but he will only do IV's after an a try with orals. And then, insurance doesn't pay for IV's, at least more than a month. And he said that the herx from IV might kill me due to the length of the illness. The reason I think it's too late for me, is cause I've had moments where I almost go into a comma after eating, Body convulsing, losing all ability to do anything. I think I've had this disease so long, it is deep in my brain and CNS. I've lost 30 pounds, and am withering away. I look alot like those people on "under your skin" where they are hitting themselves from the pain. Anyway, enough of that,....just trying to explain what my symptoms are. b
posted
Its not too late. I have had in the past the symptoms you have now -- including brain, heart, losing a lot of weight, etc. Please dont give up. I thought you were in Kansas according to previous posts. Cant you get treatment there?
I was only on IV for 1 month and it was a tremendous help.
Ive tried to encourage you the best I can that it is not too late and not to give up.
My heart has gone out to you. I have been praying for you throughout the day because I believe you still have the opportunity for life. But it sounds like your decision as already been made so I will accept that.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
thanks morning song. I am in KS staying with family. But live in texas. Husband is trying to sell house to get some funds for this. I can't get IV treatment here cause I would have to find physician able to administer it, and physicians here in KS don't believe in lyme either. My MO doc says that shots are just as effective. any thoughts?
posted
Ive been on both shots and IV. IVs were more effective for me especially if your at the point of seizures. But the decision is between you and your doctor.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would trust your doc. I do think he knows what he
is doing and believes this is what is best for
you. Are you on seizure meds? It sounds like
caution if the best virtue since you are so ill.
Get the Bb out slow/careful at first and you
should be able to tolerate increases without too
much stress to the system that could harm you. I trust him.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
a phenomenon that had long been predicted by
experiments performed in vitro [68, 69], and the ensuing
immune response, may result in neurological damage.
Our results are consistent with the notion that innate immune responses of glial cells to the Lyme
disease spirochete initiate and/or mediate the inflammation that characterizes acute Lyme
meningitis, and provide evidence of concomitant apoptotic cell death in the DRG. The latter could
be the early event that leads to peripheral neuropathy in LNB.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Order Under Our Skin DVD, and make your relatives watch it. That might help them understand what you're going through.
IV abx might be the best treatment, but oral is better than nothing. Do whatever starts killing and inhibiting the growth of infection ASAP, even if it's not the most optimal.
Otherwise the infection(s) keep growing making it harder to get rid of.
I agree with everyone else, 50mg of Doxy is too low. Herxing is better than actually dying of a progressing lyme infection.
Good Luck.
James
Posts: 872 | From New York City | Registered: Jun 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
That's a get suggestion, James.
Under Our Skin can be ordered from netflix if you subscribe to it.
I believe James is correct. I realize you are having a very hard time with this decision and understand you situation but you can't allow the illness to progress. 50mg of doxy will do very little to help you at this point. Seizures improve with proper treatment. I hope that all of our suggestions have been of some help to you.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
i was on doxy..helped a bit then got on rocephin for a month..herxed like crazy..then was soooo much better. off rocephin b/c insurance only paid for 5 weeks. back on doxy...got worse. now on zithro and getting better again. my main symptoms are neuro..think of ms symptoms and those are mine. also lots of positive thoughts helps..and i NEVER stopped exercising..was an avid marathoner...and ran one after the rocephin that is how much better i got... hoping the zithro gets me back to GOOD! prayers for us all, c
Posts: 94 | From ut | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
It may not change things for the family or
caregivers, but it certainly does to you. I am
sorry you are in the situation you are in, but you
will most likely need to change that for you to
live. You have to have a plan for getting you
well. So someone will be there to take care of the kids. And
it can be done either through home health,
medicaid or other means. It must be done. While I
do believe patients can die from the herxing it
is from lack of info. on how the cell death
compromises the system. Talk to your doctor
again. He may see fit to put you in hosp. to initiate treatment.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Actually Doxy is the number one choice of meds for Ehrlichia. Sometimes a 2nd med will be added if needed.
I still say start with the Doxy at the 50 mg dose and work up as you can tolerate it. IV Rocephin is not a first choice treatment for Ehrlichia.
Ehrlichia can be a very serious infection and should be treated ASAP. But that is one of the infections that usually can be treated relatively quickly -- 3 - 6 months versus possibly years for the Lyme and Babesia.
The Babs treatment probably should wait until after the Ehrlichia. It would be too much for many people to treat all 3 infections at the same time.
Ehrlichia affects the white blood cells and babesia affects the red blood cells so they take different meds. Most meds that work for Ehrlichia also treat Lyme. There is some overlap of meds for Lyme and Babesia as well.
Good luck.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Not everyone is the same when it comes to their abiltiy to detoxify. Some of us have one or more genetic problems which make it difficult for us to get the borrelia toxins and other toxins out of our body.
For those who say that herxes are over-rated, it is a mistake to think that everyone herxes the same. Nothing else in this illness acts the same from person to person, why would herxing? Your herx may be considerably different than someone elses.
Even with borrelia toxin binders and many other detox strategies, I seem to herx non-stop and have been so ill from herxes that I had to have help to stand.
Please ask your doctor about putting you on binders for borrelia toxins. This may make a huge difference in your ability to get rid of the die off.
Methylation cycle and KPU are 2 other genetic issues that can be significant problems for some of us. Inflammation control is extremely important too.
Search here for information about these so that you can learn how to help yourself get through treatment.
Antibiotics would be impossible for me without significant detox strategies. Best of luck, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Just had to mention, taking quite a bit of amox, just started, starting zithro today.
Doc told me to squeeze a lemon and a lime in 8oz of water (juice first, then water, otherwise, it doesn't mix) and drink it 3 times a day.
I have done the lemon juice with a full glass of water and a half a teaspoon of sugar. Lemon and lime is a little too much for me to choke down. I'll try it again later.
Bottom line, herx doesn't go away, but it really does help, with me, within 15 minutes of drinking it. I'd say 60% less pain. Arms, legs and hands were usable, however, head was still hurting and ticker was all out of whack.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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