Topic: Oral vs IV vs nothing- who has gotten well?
lymebytes
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posted
BEWARE - Facing the truth here.
Chronic Lyme, again CHRONIC -- I know of no one who has gotten well on orals alone. Do you?
IV - seems to help awhile - but relapse is common. Do you know of someone chronic who got well after years of being sick on IV that has not relapsed? (Not incuding Wildcondor)
Ex pres ILADS says 70% get well...I don't know about that 7 in 10? Did you know statistic-wise in medical terms, those are not good odds? A surgeon once told my husband he had a 70% chance after surgery of the "problem" NOT returning. I said, "Great odds!" She said, "In medicine, those are poor odds".
I literally have spoken w/thousands of LD patients, I know no on who got well on orals and 2 that may have on repeated IV over 5+ years.
I have had neuro-LD 2 years - I am slightly better on orals and the bicillin I did, but stil nowhwere near well.
Who do you know that has been CHRONIC that got well that really achieved getting their life back for good?
posted
This is exactly the question on my mind. Having gotten well-er, but not WELL. 11 mos orals only, was sick about 2 1/2 years prior to dx.
otm
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lymebytes
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Cancer patients after 5 years of being cancer free are considered perm well. What is the statistic for us?
How long was Sara sick, how did she get well, how long did it take and how long has she been 100% well? When are we ever in the safe zone of not relapsing?
posted
Know someone who had untreated LD for a year
and got back to 100% with two months of doxy (not sure
if this qualifies as chronic, though.) That was 9 years ago--
hopefully her immune system's cleaned up everything by now.
Aren't cysts only viable for 6 years?
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Vermont_Lymie
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After about one and one-half years on orals (OK, I am also doing bicillin shots for the past 5 months), I am definitely BETTER, much better than I was health-wise when I started abx treatment. I had devastating symptoms; cardiac, neurological, muscular, etc.; and felt that I would not live much longer when I started treatment.
However, I am not entirely well yet; still have some symptoms. But I went from being non-functional to being more than semi-functional. Hopefully more orals, bicilin, or IV will make the difference and I can get totally well -- I am hopeful! There are many oral abx that I have not tried yet, and I have yet to start bart tx although my llmd recommends it.
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CaliforniaLyme
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If you mean me I have a H!*)!!! SaraH*)!
Orals for longterm chornics??? BACTRIM is the only oral I have ever seen put LONGTERM chornics into full remission. Other than that- IV Rocephin followed by orals or IM Bicillin for full remission of longterm chronics. Also IV IGG was with a few full remissions.
Locally about 1/third of our people have to stay on abx forever or they decline dramatically to where quality of life is VERY VERY low. Those are the true neuro Lymies.
About 1/third are not too bad and don't have neuro Lyme, they have arthritic Lyme. They can go off & suffer along but not dramatically decline. They are the ones who try alternative things because they can afford to*)! Lucky them. They are the CFSers or fibroers- second stage Lymies. They have time.
Newly bit people go into remission with shot term orals, longterm orals or sometimes with nothing or whatever because their immune systems handle it. They are first stage. And children. First stage/Almost always into remission!!!
Longterm chornics- I have never seen Rife, never seen herbs do it in 8 years if running a support group. ONE GUY got ALMOST to full remission with cats claw & colostrum but that's our biggest herbal success story locally- and others tried the same protocol without his success.
I got my life back and have had it back for years and am 100% symptom free BUT I am still on abx because I am breastfeeding. Actually, I am stopping breastfeeding tomorrow because it is my little ones third birthday- and I told her that is as long as I will nurse (great present, eh!) so then I am going to switch to Cirpo for 3 months & then go off & see!!! I was about to be taken off & declared in full remission when I got pregnant and so haven't gone off because I was either pregnant and then breastfeeding for past THREE YEARS (I am SO DONE)-
My story is here at the following site in full (too full, graphic vomit scenes*)! I was true deathly ill neuro Lyme going into dementia with Parkie, MS & ALS symptoms, a neuro mutt-
We have a woman in full remission who was sick 9 years previously, she needed IV Rocephin & Babs tx & IV IGG. We have 2 guys in full remission with IV Rocephin who went back East to same lcinic. WOman, IV Rocephin. Woman, IV Rocephin. Woman, IV Rocephin. Woman, Bactrim. Man, IV Rocephin. Hmm, see a pattern???
One of our best success stories relapsed recently, from a flu shot/ Flu shots have had a bad history in our local group now- too many people have relapsed for my comfort after them!!
And you know what- we haev had TWO full remission neuro Lymies relapse from flu shots- holy=- 3!!! 3!!! 2 this last year 1 years & years ago!!! I am NEVER getting a flu shot!!! So yup- right there- relapse after full remission! From flu shots!
The 3 people who have had metal fillinsg removed= all chronic to this day, never GOT full remission. I have never seen that make a big difference and certainly it has not brought anywhere near full remission for people. Actually one guy backslid when he had his removed honestly. Had them removed and wasn't done right. ANYWAY. I say this over & over because there is a path here. IV or IM. Antibiotics. Treat for all major TBDs.
Anyway, life is great. It is lovely not to be in pain.
Neuro Lyme & arthritic Lyme are like different diseases. Feelfit, you are like me. We are neuro*)!@!!!!! I HAVE seen full remission with bad neuro Lyme but only with IV-
Take care all, Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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So great to hear that the ABX have allowed you to make strides! If you wouldn't mind:
1. What ABX do you feel made the biggest difference for you?
2. How long in that regimen did you notice improvement of any sort?
3. Were you doing other things (ie Emphasize detox, herbs, etc) in conjunction that you felt was helpful?
4. Lastly, you mentioned Bartonella treatment was next for you -- what is your LLMD prescribing in that respect?
I was going to PM you, but thought this information would be valuable to the whole community! Thanks in advance for your reply.
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hiker53
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I believe Lymetoo got well using only orals. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8664 | From Illinois | Registered: Aug 2004
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posted
I spoke with a woman who had Lyme for 20 years before being diagnosed. She was in really bad shape, in a wheelchair, etc., found a LLMD who she says saved her life.
She went on orals for 18 months and has been in remission for 8 years. I asked her what medications she was on and she said...."hmmm, I don't remember. Some cyst buster thing and something else....Didn't switch anything up" I responded by saying "oh, I hope 8 years from now I can't remember every detail of this nightmare."
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Vermont_Lymie
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quote:Originally posted by HamDune: Hi there, Vermont_Lymie,
So great to hear that the ABX have allowed you to make strides! If you wouldn't mind:
1. What ABX do you feel made the biggest difference for you?
2. How long in that regimen did you notice improvement of any sort?
3. Were you doing other things (ie Emphasize detox, herbs, etc) in conjunction that you felt was helpful?
4. Lastly, you mentioned Bartonella treatment was next for you -- what is your LLMD prescribing in that respect?
I was going to PM you, but thought this information would be valuable to the whole community! Thanks in advance for your reply.
Hi HamDune,
Thanks for asking -- I have been meaning to write a 18 month update of my progress for folks!
I will answer some of your questions now, and since we are getting ready to do my twice/week bicillin shot, come back tomorrow and answer the rest:
1. What ABX do you feel made the biggest difference for you?
The thing that amazes me is that every single type of abx that I have taken has helped. The most immediate, quickest and dramatic improvement was my initial treatment with 400mg/day doxy.
That was the abx that I started treatment with last summer. I was a late-stage very neuro lymie; my last untreated bulls-eye was about 8 years ago, and I had a couple of tick-bites going back years before that. I had become very ill over the two years preceding diagnosis and treatment.
Unfortunately, despite clear initial gains from 400mg/day doxy, my first llmd switched me to 3g/day of amoxy after only a couple of weeks on the doxy! (That is, I wish I had stayed on the doxy longer -- knowing what I know now! But the amoxy did help too.)
I was on amoxy for a full year after that; slowly working up to 10.5 grams/day, split into morning and evening doses. I weigh about 130 pounds.
My improvement on amoxy was slow and steady; I herxed every time I increased dosages, and it definitely helped. Last spring my blood tests showed very high antibodies for babesia m., so I started on malarone (one adult dose/day) for a little over 5 months.
The malarone was the most difficult tx for me to take, it really knocked me out for at least two months. After two months, I noticed a strong improvement in my breathing. My heart palps stopped too.
I pulsed in some zith with the amoxy and at the start of the malarone, but had such intense herxes with it (could not move my neck, was just one reaction), that I stopped the zith after about a week. All together, took maybe 3 weeks of zith.
I have maintained some or most of those gains after stopping the malarone this summer, but am not entirely sure that we wiped out the babs; the heart palps have returned, and some more of the asthma-type symptoms.
After a year on amoxy, we felt it was time to try something else due to continuing symptoms. I started on low-dose minocycline; started at only 50mg every 3 days.
Mino is a powerful abx; I could only tolerate that low a dose to start with, and since the summer, have worked up from there to about 75mg/day.
In August I started bicillin shots; once a week for the first 3 or so weeks; now up to around 2 shots/week.
I have had very good cognitive improvements over the past 18-months of treatment. My energy level is so much better, as is my memory and mood. My head and hand tremors are virtually, about 90+% gone. My constant chest pains are mostly gone, as is joint pain. My worst days are now better than my best days before I started treatment.
I do still have neuro symptoms and dizziness though; and muscle pain and stiffness in my shoulders and neck that I never had before lyme.
So, all of these helped: High-dose amoxy; high-dose doxy; azithromycin; bicillin shots; malarone.
Time for the bicillin shot, I will come back tomorrow for the rest!
[ 23. January 2008, 09:33 PM: Message edited by: Vermont_Lymie ]
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lymebytes
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I was sick for over 5 years- does that count as chronic? They said MS, Lupus, RA, Fibro, DDD... who knows?
I was on over 10 different medications to try to manage my symptoms and still not functioning.
I did 22 months of orals and a few months of Bicillin injections (with 7 months of Mepron) then added Cowden, stopped abx at 23 months.
I'm well. I am off all prescriptions. I am working full-time, exercising, living life.
I have been off abx for 2 months so only time will tell but I feel great.
I am still doing the Cowden protocol and will finish out the next 2 months of that.
I had the paperwork to file for disability and now I am LOVING my job and really living my life.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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ByronSBell 2007
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My LLMD says 95% of his patients get well.
I know another LLMD that does IV treatment and she says she can't guarantee 100% depending on circumstances but she can prevent relapses. I dont know how but I will come March
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Keep this in context, lymebytes. You had Lyme for 10 years prior to treatment, right? Chronic Lyme can be classified after just one year or so. So what you really want to ask is, "how many people with untreated Lyme for 10+ years got better on orals, IV or nothing?"
That'd be more pertinent to you right? Otherwise you're lumping people with 1 year of untreated Lyme in with people like yourself that have had it much longer.
I wish you well. I hope that your frustration ends soon. I too am frustrated with Lyme. I (literally) feel your frustration.
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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"About 1/third are not too bad and don't have neuro Lyme, they have arthritic Lyme. They can go off & suffer along but not dramatically decline. They are the ones who try alternative things because they can afford to*)! Lucky them. They are the CFSers or fibroers- second stage Lymies. They have time. "
My primary problems have mostly been pain-related, and I have not improved with treatment (including two rounds of IV). I would say that I've progressively, rather than dramatically, declines over the past 7 years from several areas of pain to my entire body. Does that mean I have a worse next stage to come?
monkeyshines
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TerryK
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CALyme wrote:
quote:About 1/third are not too bad and don't have neuro Lyme, they have arthritic Lyme. They can go off & suffer along but not dramatically decline. They are the ones who try alternative things because they can afford to*)! Lucky them. They are the CFSers or fibroers- second stage Lymies. They have time.
Can you please explain what you mean by neuro lyme? I have been diagnosed with fibromyalgia and CFIDS and I certainly have tons of neuro symptoms. I don't know of a single FMS/CFIDS patient who does not.
So are you saying that people with fibro/CFIDS symptoms are 2nd stage??
Terry
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quote:Originally posted by KS: I responded by saying "oh, I hope 8 years from now I can't remember every detail of this nightmare."
KS, I can 100% relate to what you are saying here. I run into people that have made strides or completely recovered. When I ask them what works, they usually do not remember what they were taking or even some of their symptoms.
I know that seems like a far cry from where we are now, but we too can forget all that. Fortunately, we are so foggy-minded that it will all be a blur anyway!
Vermont_Lymie, I am really looking forward to the rest of your post. After that, I have more questions and feedback for you!
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Tracy9
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I believe Lymeblue got to 100% with just orals. It certainly does, however, sound like I need to look more into IVs.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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mlkeen
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I'm well. Sorry I drop in only occasionally.
I guess I could be have been called chronic, I preferred long term, slightly more positive.
I began having strange symptoms in 1997, didn't connect the dots until 2000 and did have a positive Elisa, no WB in the spring of 2001. Didn't get well with doxy. You know the drill, too little for too short a time.
Anyhow, I ended up at an IV clinic, did rocephin, didn't help. Ended up at a LLMD who did long term orals. Expanded co-infection testing showed positive for Rocky Mountain, Bart and mycoplasma. All require something like tetra to heal, did that 15 months with a great degree of wellness. Chased it with diflucan for several more months and improved more but still not well.
THEN my llmd had me get serious about possible food sensitivities. I had been on the low carb diet with limited wheat, but apparently just a little caused me a lot of problems.
I turned out to be highly gluten intolerant. I DID NOT HAVE GUT ISSUES, just pain, pain, and more pain plus brain fog and chronic fatigue. I stopped all wheat gluten cold turkey, must be like stopping smoking, the first two weeks were the worst. BUT, now almost two years later I lead a very full and active life totally med free. I take supplements because my gut is still healing.
If I eat a test cookie I have pain several days later. Otherwise I have no interest in wheat products.
My point here is if you are chronic, something is most likely compromising your immune system preventing your body from healing itself. It will be something different for each person and most likely something you come in contact with every day. Drugs can not replace a stressed immune system.
My son is also gluten intolerant, our lyme ebbed and flowed in a similar pattern. dah! Connection, but my brain was toast.
He is at college this year and having trouble eating gluten free and is less well than last year when he ate mom meals.
My daughter shows no symptoms, my sister and mom do.
For some it is hard to accept related causes to our symptoms. In life all is related.
Rest and be well. Mel
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posted
I have had chronic Lyme for 35 years. I have taken orals only for one year along with herbs/supplements, lots of detox (including heavy metal detox), and exercise.
I am currently being weaned off the meds as my only symptoms are low energy in the morning and insomnia. We are working on adrenal support and thyroid meds thinking these issues may not be Lyme. The only abx I'm on is mino/plaquenil. I'm also on Lariam until the new Cowden herb comes out for babs (babs seems to be in remission, no symptoms for over two months).
I know I still have the cystic form as if I take Tindamax it knocks me on my butt. I'm taking GSE right now for that form before we try Tindamax again to start out more gently.
I'm focusing on detox right now (saunas, full Cowden, glutathione cream, coffee enemas, lemon water).
I won't know for a time, of course, whether I've reached remission, or whether I'll be able to stay there, but I have reached 100% (okay 95% because of the fatigue/insomnia) with orals .... but I also don't feel that abx are the only thing that has brought me to this point.
I am feeling some fatigue for the past few days. I don't know if it's the Lyme, or that the thyroid meds still need tweaking .... but it wasn't so bad that I couldn't play racquetball.
I should probably add, my daughter is in remission on orals. We don't know when she got Lyme but she had learning disabilities since she started school (she's in 8th grade) and they are gone.
She's three months symptom-free and a couple weeks off meds ... she's on full Cowden for two months .. then she'll go completely off.
My LLMD says that we are not the norm, that we both have very strong immune systems. He seemed genuinely surprised that we are doing so well.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CaliforniaLyme
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Neuroborreliosis is not borreliosis. Neuroborreliosis is neuro Lyme.
This is textbook, I am not making it up, it is real life. Go research & read up if you didn't know that.
If your doctor did not consider you a candidate for IV Rocephin, you are probably not Neuro Lyme.
We are not all the same. Some of us are sicker than others. ALS Lyme is neuro Lyme. Parkie Lyme is neuro Lyme. MS Lyme is neuro Lyme.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I was told last fall that we would be talking about IV in January because of my extensive cognitive issues -- getting lost driving to familiar places, severe disorientation, mental confusion, inability to read block text, poor short term memory, poor word recall, etc.
Mine cleared up with Levaquin and parasite treatment (I thought it was the Levaquin and never questioned it until the LLMD didn't seem sure which did the trick or if it was both). It was a surprise to him that I got better like I did. He was really reading through my file searching for what did it, and all he could say was that I was not the norm.
So, I wasn't *just* fibro/CFS (though I had symptoms of both).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymebytes
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Eyebob - I'm impressed, you read my story. It is assumed and likely symptoms percolated for years before the "explosive" event in 2006. The first thing Dr. S in SF said to me, "You are lucky you caught it so early!" What? I guess he meant after I became "full body" symptomatic. So I don't know when I got LD, 10 years ago, 20 years ago or 2 years ago. I thank you for your post - frustrtion doesn't even come close!
Encouraging stories here....glad I posted. I think in my case, it ultimately will take IV, but I guess LLMD's want to mess around a few more years on orals.
TerryK
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CALyme wrote:
quote: This is textbook, I am not making it up, it is real life.
I wasn't trying to suggest that you were making it up. I was trying to understand.
CALyme wrote:
quote:Go research & read up if you didn't know that.
I had already done my own research which is why I was wondering why your take was different than mine. http://www.ilads.org/goldings.html
A fibromyalgia diagnosis may only require widespread pain and certain tender points to be present but many if not most of the symptoms associated with neuroborreliosis are hallmarks of fibro and CFIDS patients. Of course there are varying degrees of illness. The difference is that fibro patients are not given the tests to see if they have encephalopathy and many of the other things listed in the ILADS link above, instead they are given meds to try to control their symptoms and told "it is just fibromyalgia, learn to live with it". Fibro is not like lyme arthritis. Fibro is included under the 'arthritic condition' umbrella but there is typically no swelling of the joints like there is in lyme arthritis. It is much more than sore muscles and joints.
As far as fibro and CFIDS patients being stage 2, I don't understand why you believe that and I don't think that is technically correct but I could be wrong. Can you point me to some info about that? I think the stage depends on the person and has nothing to do with a diagnosis of fibro or CFIDS. Fibro is a list of symptoms with no known cause and in my case and the case of my mother, sister etc.. it is a mis-diagnosis or at the least, fibro should be diagnosed as secondary to lyme (as caused by lyme and co-infections).
CALyme wrote:
quote:We are not all the same. Some of us are sicker than others. ALS Lyme is neuro Lyme. Parkie Lyme is neuro Lyme. MS Lyme is neuro Lyme
I can see where a relatively fast, highly destructive/fatal process is going on with an ALS, MS and Parkinson's type presentation so maybe that is what you mean? Studies do show that fibro patients are substantially more likely to get cancer and that they have a much lower survival rate from cancer than the general population but that is not talked about or listed as a symptom. I've no doubt that there are other things like that to be uncovered.
My sister has been diagnosed with fibro and not lyme (she hasn't pursued a lyme diagnosis) but trust me, she is very ill. Her bones are disintegrating for no apparent reason, she has seizures, is bedridden, has cognitive/memory problems, is depressed and the list is long of her daily suffering. I'm very worried about her prognosis if she doesn't get help.
CALyme wrote:
quote:If your doctor did not consider you a candidate for IV Rocephin, you are probably not Neuro Lyme.
I have been offered IV abx but that is standard ILADS protocol if you have been on orals for awhile and are not having significant improvement.
It is common practice to consider intravenous antibiotics upon failure of oral medications in patients with persistent, recurrent, or refractory Lyme disease, and as the first line of therapy for certain conditions, (i.e., encephalitis, meningitis, optic neuritis, joint effusions, and heart block).
Anyway, not trying to ruffle your feathers, just trying to understand.
Terry
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TerryK
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For those who haven't seen it, this is from the ILADS guidelines regarding choice etc. of abx
In acute Lyme disease, the choice of antibiotics should be tailored to the individual and take into account the severity of the disease as well as the patient's age, ability to tolerate side effects, clinical features, allergy profile, comorbidities, prior exposure, epidemiologic setting, and cost.
Conversely, persistent and refractory Lyme disease treatment is more likely to include intravenous and/or intramuscular antibiotics. The choices depend in part on the patient's response to antibiotic therapy and on the success of antibiotics in treating other Lyme disease patients.
Therapy usually starts with oral antibiotics, and some experts recommend high dosages. The choice of antibiotic therapy is guided by weighing the greater activity of intravenous antibiotics in the central nervous system against the lower cost and easy administration of oral antibiotics for B. burgdorferi.
Oral Antibiotic Options
For many Lyme disease patients, there is no clear advantage of parenteral therapy. Along with cost considerations and pressure to treat patients with Lyme disease with the least intervention, there is growing interest in the use of oral therapy.
First-line drug therapies for Lyme disease may include (in alphabetical order): oral amoxicillin, azithromycin, cefuroxime, clarithromycin, doxycycline, and tetracycline. These antibiotics have similar favorable results in comparative trials of early Lyme disease.
Intravenous Antibiotic Options
It is common practice to consider intravenous antibiotics upon failure of oral medications in patients with persistent, recurrent, or refractory Lyme disease, and as the first line of therapy for certain conditions, (i.e., encephalitis, meningitis, optic neuritis, joint effusions, and heart block).
Ideally, the intravenous antibiotic should be selected on the basis of in vitro sensitivity testing or clinical experience. Intravenous antibiotics are also justified by concern for penetration into the central nervous system.
Until recently, ceftriaxone, cefotaxime, and penicillin were the only intravenous antibiotics routinely studied for use in Lyme disease. Intravenous imipenem, azithromycin, and doxycycline have an adequate antispirochetal spectrum of activity and may represent suitable alternative therapies. However, the latter two drugs are often considered for intravenous use only if they are not tolerated orally.
Intramuscular Antibiotic Options
Intramuscular benzathine penicillin (1.2 to 2.4 million units per week) is sometimes effective in patients who do not respond to oral and intravenous antibiotics. If intramuscular benzathine penicillin is used, long-term therapy may be necessary due to the low serum concentration of this form of penicillin. Benzathine penicillin has mainly been used in patients who have had multiple relapses while receiving oral or intravenous antibiotic therapy or who are intolerant of oral or intravenous antibiotics.
Personally, I'm going with treating co-infections and removal of metals during which time I will be on the oral lyme therapy and probably IM bicillin shots. If that doesn't work, then I'll go with IV.
I want to have the best chance of getting rid of this beast which is why the removal of metals and co-infections first. I cannot afford the 10's of thousands of dollars IV therapy is likely to cost me more than once so I have to make that one time count. I'd also rather keep my gall bladder.
If I had MS, ALS or some other aggressive presentation, I'd go IV right away. I'm not a doctor, just my opinion after several years of research and 20 months of treatment.
I think once the bart gets treated, I'll have a better idea of what is left as far as lyme.
It does occur to me that fibro could be a combo of bart and lyme and MS could be a combo of lyme and something else etc. etc... So many fibro patients have the lumps and other symptoms that are common to bart.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Terry, that's what I did ... metals and coinfections ... don't forget parasites.
By the time we got through with that, the Lyme was pretty much gone, too. Lucky me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
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I'm glad to see some encouraging posts. I wasn't sure there would be any.
I think also the following is true: if we are trying something that doesn't seem to be yielding positive results, we need to try something else! There are a bunch of combos out there that will help...it's finding what works for OUR bodies individually. Just because someone on this board posts something dire about one antibiotic or protocol, doesn't mean it won't work for someone else.
Part of it too may be finding a doc whose approach works for YOU. I know I had to "fire" one because she just wasn't aggressive enough for me. Another I went to go see wasn't scientific enough for me. My doc now is VERY aggressive....and we are getting results! But that is because my body seems to be able to tolerate this for whatever reason.
I was very scared, terrified, when I first started coming here, by what I read. Now, a year into treatment, I know to take these posts in, but not become paralyzed by fear that I'll never get well. Chances are......we ALL will. It's just a marathon, which is really hard to accept.
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CaliforniaLyme
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posted
Monkeyshines, I don't know and no one does except a higher power if you are a believer- I sure hope not!!! Have you been treated for all coinfections regardless of serology? Those are the people I see who do the best- people who are treated longterm with abx and people who are treated for all major TBDs regardless of serology. I really hope you have a good LLMD!!
Terry, I think there is a misunderstanding that I was saying fibromyalgia is exclusive of neuro Lyme- no, not at all, many neuro Lymies have firbomyalgia. It is OFTEN inclusive of it! Sometimes fibro is on the path to neuro Lyme. Sometimes it is with it. I had fibromyalgia and CFs AND neuro Lyme, many people with neuro Lyme have that as part of the whole handbasket!!!
But JUST fibro WITHOUT neuro symptoms is different than neuro Lyme.
Neuro Lyme is inevitably tertiary.
We have many people who come to our support group who are relatively static in presentation. They may have fatigue, arthritis, firbomyalgia, but they are NOT progressive.
They can LIVE without ANY treatment- NOT live HAPPILY- they will SUFFER- but they are not progressively getting worse neurologically.
Some people progress, some don't! Some people get initial manifestation of Lyme, get treated and are fine. Some get sick again. Some get sick and never get well again. Some get a static presentation that I can understand being called Post Lyme Syndrome. Some people get into remission and never come out. Some relapse...
I don't know what you are, but if you are progressively worse that in my experience tends to be neuro Lyme. There are people who can go off abx and they just suffer, they don't progress until death. Neuro progression is neuro Lyme in my book and what I have read.
I would not recommend IV for anyone who didn't have risk of death on their own because IV has risk of death itself. For neuro Lymies, it is way worth it because we will die of the disease anyway without treatment. I would have progressed until death without abx.
Some people won't. They are lucky!!!
Neuro Lymies OFTEN but not always- but ALMOST ALWAYS AHVE TO STAY ON MAINTENANCE ABX in my experience. REMISSION for a true neuro Lymie is rarer than for the others. But it can be done.
But almost all the ALS/Lymies I know have had to stay on maintenance abx- and almost all MS Lymies!!! Not all though!!!
Some people never go neuro Lyme. It is great for them.
Brainfog is not encephalopathy is not dementia. One can lead to the other, one can have one and then develop the other, but they are not the same.
Our ALSers, one guy, he got SO much better in a year of abx he went OFF ALL ABX!!! You can guess what happened!!! BOOM! Symptoms returned. he went back on and has stayed on. All of our local ALSers are still on abx. They decline without it.
Our person who had RSD and moved away, she is still on maintenance abx but has no symptoms. Our MS Lymies- QUITE a few have gone into full remission- all with IV Rocephin followed by orals and then off. But some are still on maintenance abx.
And then we have the chornics. Non neuro Lymies. We have people who can go off abx while still sick and not decline dramatically neurologically! That is the difference bewteen neuro & non-neuro that I see. Those people have fibro (and SO DO the neuro Lymies most of them!) and CFS etc but not progressive neuro symptoms.
TERTIARY LYME DISEASE can involve dementia, fugue states, amnesia and anoxic encephalopathy.
Primary Lyme disease, a flu-like illness with fever, chills, and muscle aches, occurs in about 50% of those infected with Lyme disease.
Lyme disease - secondary or stage 2; Stage 2 Lyme disease Causes See Lyme disease for a description of the initial stages of the disease. Secondary Lyme disease develops within days to months after the tick bite, when the infection spreads via the lymph system or bloodstream.
The central nervous system and cardiac system may be affected. Symptoms may be intermittent and may disappear after days, weeks, or months. Involvement of the heart occurs in 8% of people with untreated Lyme disease. Neurologic involvement occurs in 10% of patients with untreated Lyme disease.
Causes Tertiary Lyme disease occurs months to years after the initial infection (see Lyme disease for more information). Symptoms include skin, neurological, and musculoskeletal problems.
Symptoms joint inflammation in the knees and other large joints chronic arthritis memory loss mood changes sleep disorders Additional symptoms that may be associated with this disease:
numbness and tingling consciousness, decreased confusion abnormal sensitivity to light
ANYWAY, glad I have a life again, I myself DO BELIEVE that I may very well die of this disease- I AM a relapsing remitting progressive person. They thought I had lupus which looking back was clearly my secondary stage of infection, went into remission with abx for pneumonia!!!
And when I got sick again, rebitten, reinfected, I was from the get go on a path straight to heck, not just a little sick, but going down down DOWN- very very TERTIARY=
I HOPE I stay at the level I am for the rest of my life!!! But I don't take it for granted at all.
And my 10 year old? I fully FULLY expect her to get diagnsoed with fibromyalgia or CFS when she is 15- or 30- or MS when she is 40- I HAVE IT IN MY WILL THAT IF SHE IS DIAGNOSED WITH CERTIAN THINGS SHE IS TO BE TAKEN TO DOC S OF SF TO BE EVALUATED OR BE DISINHERITED!!! (not kiddinG! in my will*)! only way i can control from beyond the grave*)!
The Russians did an abstract in which they called Lyme a "life stage disease". They wrote about how children/childhood is often first stage, how secondary is often in 20s, and in the later years- the third stage... I had read, of course, hundreds of descriptions of Lyme as a disease with stages, but that one abstract just STUNNED me with the realization that yes, months to years afterwards, it can return. It can. And it does/
And I am waiting here, adn garnering myself against that day, so that if my little kiddo whom I love with all my heart gets sick again, I'll have the latest and the best for her, and for me, and for anyone in my life I love- I love our local LYmies, some of them have become dear dear friends over the years-
ANYWAY, off to decorate the dining room with streamers and party decor*)! *my baby is 3 today) Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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adamm
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Wait, so did these Russian researchers produce irrefutable
PROFF that it was incurable? Could you post a link to the study?
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TerryK
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six - thanks for the feedback. That is really encouraging!!! I've long admired your fast progress and I'm sure some of what you have been doing has sunk in and is part of why I have chosen to go the way I'm going.
Thanks for the warning about parasites. I agree, I think it is another important piece of the puzzle for some of us. I was recently put on biltricide and I have never been so sick in my life!! It is clear that parasites are part of the picture. Once I get up to full dose of levaquin I am to slowly start biltricide. ugh - hope I can manage it.
I have also recently gone on valtrex. I'm finally up to full dose starting yesterday and today I have more energy than I've had in a very long time. I suppose that will be short lived but I'm really enjoying my vacume today.
CD57- From what I gathered in a previous post, we have the same LLMD. I love him. He is wonderful and really listens, is logical and very smart. I'm excited for you that you are showing improvement.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I think it's good to take in all the panorama of experience here and figure out what works best for each individual ... the same thing doesn't work for each and every one of us ... that's what makes Lyme treatment so tricky.
I'm glad my experience has helped you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
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Six and others--I'd love to hear more about metals and parasites....what are you folks using to treat these....and how do you test for them? (Perhaps I should start another thread! ) I did some blood testing for the heavies but showed very low so I didn't think this was a problem. Would love to hear what you did.
TerryK--yep, same LLMD as you. LOVE him and the way he thinks. He stuck with me through some terrible times and is totally unflappable!
Also, finally, we really have to remember....people who are well don't come here anymore!! Hooray for them!! So Lymebytes, some day you won't be here either!
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CaliforniaLyme
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Adamm, that is a big debate- remission or cure? Clinical cure or biological cure? No, no proof from them, they were studying manifestations of the disease in life stages- they were not even debating that question or trying to prove it!! And in one German study less than 9% of people who get Lyme went to stage 3!!! So it's not like 1,2,3 for everybody just unlucky people like me*)! Everyone does not manifest 3 stages!! SO some people are either cured or their bodies modulate immune response!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
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Ok..this small "trial" has resulted in 15% get well!
At this point 33 posts 5 mentioned well or almost well.
That pretty much washes my LLMD's 70% theory, which I have always believed was nonsense and his saying 70%, is much too high.
The LLMD who said 95% has to be treating people with ticks still attached. Not one LLMD would say say 15% - he'd lose business! If you include all the people Sarah says she knows it bumps it slightly -from 1.5 in 10 to a little over 2 in 10.
So thinking positively, approx. 20% get well from this small sampling.
CD57
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Lymebytes, don't forget though: the people we all really want to talk to aren't here anymore! (Except you Sarah! ) We can't afford to lose sight of that fact.
My LLMD says it's really too bad there isn't more of a concerted effort being made by some organization or another to collect success stories....because THEY ARE OUT THERE. And he wasn't just speaking of his own track record. And for what it's worth, he also says 70-80% of patients get 70-99% well!
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David95928
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This is a very interesting discussion. It's unclear to me whether I was/am neuroborreliosis or neurolyme. I think neuroborreliosis. My clearly neurological symptoms included disorientation, numbnes, tingling, fasiculations, vertigo, speech disturbances, learning problems, cognitive processing problems...
Briefly, for several days, I had trouble walking in 1991 but then rallied and went on to get into great shape during the mid-nineties. For example, at a body weight of 150, with two shoulder surgeries behind me, and in my mid-forties, I was doing squat sets with 225-245 lbs. on my shoulders. Then I started slipping into chronic bronchitis, heat/exercise intolerance, fatigue, memory and disorientation problems...
It's been five years now and my only antibiotics have been Zithromax, which was changed to Biaxin early on and Bicillin LA. I'm still on both and scared to go off. A couple of years ago, a young man of twenty-one, who had Lyme since childhood, died unexpectedly in his sleep. He had worked the previous day. One of my students knew him well and told me he had been off of antibiotics for a while and was just becoming symptomatic again. He was riding the rodeo, for God's sake! His story is in the obits here. The name was Ted Hogard. My doctor told me very definitely "He died of Lyme." Since then my doctor has not even broached changing a regimen that is clearly working. He says I have made the best recovery he has seen. Interstingly, since this tragic event, no local docs/ducks have expressed any skepticism about my illness or my treatment.
Once treated, I went on to literally build my own house (never again!), get promoted to professor, start squatting 185 lbs (shooting for 225)and, with supplements, am pretty much symptom free.
People's comments are welcome as are any questions.
Dave
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Lymebytes, you have to remember those who are well don't stick around.
I did a provoked urine test for heavy metals. I was high in lead.
For parasites, I used Humaworm. I felt SIGNIFICANTLY better after Humaworm.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Andie333
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Back to the original question: lymeinhell got well using only orals, I think, and has been off all abx now for several years.
I've only taken orals, too. When I was finally dx, I had gone untreated for at least 9 years, probably longer. I had a lot of physiological symptoms and many neuro ones, as well.
I ranked my health at the time I started treatment at about 18%. That was 2.5 years ago. I've cut back my primary antibiotic for Lyme but am still taking medicine for co-infections and cysts.
I went from being pretty sure I'd never ever be able to work--even part time--to starting a fulltime position exactly a year ago. In that year, I only took 3 sick days, which seemed like a miracle to me.
I'm not at 100%, but most days, I'm at 85%, and in addition to working, I have a social life again and am able to vacation, etc. I just have to take it easy and keep stress as minimal as possible. Lyme seems to be a disease, for me, that thrives with stress.
My LLMD didn't initially prescribe IV for me. First, she said, she was afraid of how much I would herx (considering how sick I was). Secondly, she knew my insurance would only cover 1 month. I couldn't afford anything more. So we did orals, and at this point, I'm not sorry.
Even with the orals, I had terrible herxes at first. I just kept going, though I did sometimes reduce the dosage for a bit.
Hope this helps. I think it's a good topic.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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quote:Originally posted by lymebytes: Chronic Lyme, again CHRONIC -- I know of no one who has gotten well on orals alone. Do you?
ME! Can't say I'm cured though!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96205 | From Texas | Registered: Feb 2001
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CD57
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There we go...two more who have improved! David in CA, if you return to this topic, can you post what you remember about your treatment?
Another one who is well is WildCondor. I believe she did IV with Dr B as well as orals. And she was very very sick, multiple bites, etc.
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TerryK
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CALyme - I hope you stay in remission forever too!!
Thanks for giving your definition of neuro lyme. I don't believe I could have gotten that from researching or a text book because that is not the technical definition from what I can tell.
As far as fibro, I've been dealing with it for years, been involved in a lot of support groups and honestly have never seen anyone that wasn't progressive although they must exist since we keep hearing that it is not a progressive illness. I think that because the progression is so slow (almost 30 years for me), the powers that be don't get that it really is progressive for many if not most people.
Fibro is almost always initially cyclic in it's presentation. Alternating periods of remission and illness. Sometimes the cycles can be very far apart (even years or decades) and extremely varied in symptoms making it hard to put down to one illness until one eventually reaches a point of full on symptoms that don't go away. I did have periods of sometimes several years with horrible symptoms. Like you, one abruptly stopped when I went on abx for another illness.
That said, there could be fibro patients who don't progress and don't belong to support groups and aren't looking for answers who actually are static, I've just never seen it. But truely, arthritic lyme is not the same thing as fibro or CFIDS in terms of symptoms or prognosis as far as I can tell.
I think many cases of fibro are lyme and it makes perfect sense to me based on what we know about cystic lyme that one could have long periods of remission. As one ages the immune system doesn't work as well, we pick up other infections and an accident or emotional trauma comes along and we suddenly become very ill.
I definately have neuro lyme as do all of my family members. I have fibro, my mother and one sister does too. Another sister who has been on abx for years for acne has not developed fibro and my brother has not developed fibro. We all have lyme symptoms though so I'm sure we have TBI's.
Interesting discussion.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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CD57
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One more thing (can you guys tell this posting is touching a nerve? Death to 'ketes and company!))
Siebertneurolyme posted about a month ago her notes from the NY Lyme group, which the famous Dr B attended/moderated (I think a neuro guy from Columbia too). And in her notes I distinctly remember something which perked me up: Dr B said people who don't relapse within 3 years TYPICALLY DON'T. I think Sarah was the original author of the post, as she drew our attention to the fact that the NY folks had this great opportunity to talk to Dr B!
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TerryK
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There is a thread on lymenet with success stories. That would be a good place to look for those who have gotten better and are no longer here.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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CaliforniaLyme
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MORE do get well- they never come here or join groups because they get well so fast- they are usually people recently bitten- within one year!! I run a lyme hotline form my phone and i get lots of people phone calls form people that DO get well- I think your LLMD was telling the truth- but they are the more recent folks!!! Under a year they tend to get better!!! And children- almost ALWAYS get better!!!
I just rememebred ART DOHERTY- high dose AMOXICILLIN got him into full remission after years of being chornic- NOTE: anyone who does high dose amoxicillin it can crystallize in your kidneys if dehydrated so drink LOTS OF WATER so it doesn't!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Vermont_Lymie
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quote:Originally posted by HamDune: Hi there, Vermont_Lymie,
So great to hear that the ABX have allowed you to make strides! If you wouldn't mind:
1. What ABX do you feel made the biggest difference for you?
2. How long in that regimen did you notice improvement of any sort?
3. Were you doing other things (ie Emphasize detox, herbs, etc) in conjunction that you felt was helpful?
4. Lastly, you mentioned Bartonella treatment was next for you -- what is your LLMD prescribing in that respect?
I was going to PM you, but thought this information would be valuable to the whole community! Thanks in advance for your reply.
Hi -- sorry, was going to come back sooner to answer your questions! But because I have been getting healthier, just this month I took on an additional (and physically and intellectually challenging) part-time job.
So, I was exhausted yesterday and am having less time on lymenet in the past couple of weeks, not because I want to -- lymenetters have been essential support for me in this quest for recovery from TBDs -- but because being better means being much busier!
*2. How long in that regimen did you notice improvement of any sort?
I am not sure my experience is typical. I was a tertiary, late-stage neuro-lymie; and in bad shape. I was not in a wheelchair, but heading towards it and having a wheelchair was my fondest wish before starting treatment.
Treatment started with 400mg/day doxy (split into breakfast and after dinner dosages), and I felt clearly better after two weeks!!! I was so unbelievably happy and grateful to have doxy right after starting treatment -- first to have a diagnosis, and then to have such quick results.
Before having a diagnosis of lyme in July 2006, I thought perhaps I had early parkinson's (because of the tremors); a stroke (because of speech difficulties and half-side of face numbness); early alzheimers (because of loss of memory and not being able to finish my sentences), among many other symptoms. A doctor said I had fibromyalgia, and one suggested maybe it was early peri-menopause symptoms
In other words, like so many others have found, doctors I saw for many horrible symptoms were pretty useless until I found someone who actually knew something about TBDs.
I started herxing the same day I started the doxy. I became completely spacey, and was not capable of doing much for a couple of days. The way I felt was confirmation to me that the doxy was treating a neurological infection.
After the first two weeks, and first month, I felt some improvement. But still had a far way to go....When starting treatment, I really had no clue, except from lymenetters, how long this would take.
*3. Were you doing other things (ie Emphasize detox, herbs, etc) in conjunction that you felt was helpful?
Detox, nutritional supplements, dietary changes and herbs were VERY important to me during the first year of treatment! They still are important, but less so.
Treatment has been a bumpy ride; although clearly the last few months have been easier and the first 6 -12 months were the most difficult. I guess treatment has reduced my chete & critter load, so that is why abx treatment is easier now than the beginning.
I love hot epsom salt baths with baking soda. When I started tx and was herxing, these baths gave me alot of relief and just made me feel better.
(Oddly, the last 2 times I took epsom salt baths, with either baking soda or hydrogen peroxide, I had so much energy that I could not sleep more than a couple of hours on those nights. Both times were recent, and I can't figure that one out -- the baths used to relax me, and now they make me feel so good and energized that I literally cannot get a full nights sleep after one!).
To detox, I have used all of these as needed; not every day. I think all of them helped: Lemon juice in water Chlorella (like the Biopure chewable brand) Welchol (prescription med, bile acid sequestrant) Saunas (regular sauna whenever I can)
Have been taking Humaworm for the past three weeks; it is a pretty strong mixture of herbals like garlic, Pau D'arco, and about ten other herbs that have a long tradition of use as anti-parasite/antibiotic/digestive tonic herbs. It has had a pretty good effect on me (see the thread for more info), and helped knock out a residual candida infection.
I really recommend the Buhner book "Healing Lyme" and I used Resveratrol (knotweed brand he recommended) and Andrograhis during the first year of treatment, along with stephania and some of the supplements he recommended (glucosamine and BioSil).
His research in this book seems pretty credible and solid, and I definitely believe that these herbs (resveratrol and andrographis) helped with my recovery.
Also started a number of vitamins and nutritional supplements during the first year of treatment that I think helped: Jarrow methyl-B-12 (sublingual); magnesium; Vit C and a daily B-50 vitamin; lecithin. Have occassionally used also Host Defense (New Chapter); Gingko and huperzine A (more Buhner recommendations); and lots of garlic!!
Other supplements I use now and like: CoQ10 (60-90mg/day); recently started Acetyl-L-Carnitine, 500mg-1g/day.
Hope that info helps! The abx have been the big guns (forgive the military metaphor) in my treatment, but the nutritional, detox and supplemental support has been necessary to feel good, or at least better, during treatment. I will try anything that seems plausible, affordable, safe, potentially effective, and seems like it has a reasonably good mechanism for working against TBDs and improving health!! By any means necessary!!
Sadly, have had to give up red wine and belgian beer for the past 18 months; and a lifetime without these would be regretful....
Would love to try HBOT; my llmd thinks it could be helpful, but have not been able to carve out the funds for that yet.
*4. Lastly, you mentioned Bartonella treatment was next for you -- what is your LLMD prescribing in that respect?
Rifampin -- and starting slowly with that, starting at 150mg day and working up to 600mg/day. You need to take rifampin with another abx, and I will take it either with mino (now on about 75mg/day) or start biaxin (500-1000mg/day).
[ 26. January 2008, 09:31 AM: Message edited by: Vermont_Lymie ]
Posts: 2557 | From home | Registered: Aug 2006
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CD and Terry, I am thinking you have the same LLMD as my DD. He is WONDERFUL, can't say enough about how kind and gentle he is.
DD has had Lyme for 16 years now, un/mis diagnosed for 13 years. So she would be in the over 10 year catagory.
She has had a horrible time of it. NOTHING and I mean NOTHING has helped her. HBOT, IV, IM, orals......NOTHING.
So I totally understand the frustration of the battle of your life. We are off to Reno to see C. R. at the Conscious Living Center next Friday.
DR. H says she can work miracles. We NEED a miracle here. I guess we will live under a bridge...she is VERY expensive, but how do you put a price on a life? Dang, and it is really cold in Reno right now too........LOL.
DD doesn't want to go, says it is a waste of more money, nothing has worked, and she is just going to die. Could use some positive thoughts and prayers sent her way. She is about to give it up.
Take care all you long timers, there HAS to be something that works. You just have to find it!!
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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I am soooo confused. After 6 months of treatment, I am being told I have neuro Lyme and need IV Rocephin and should have a Mediport placed first thing.
What led me to the LLDD was 20 years of FIBRO and SEVERE SEVERE migraines. One of my patients told me about the doctor that treated her for her Fibro.
I always kept telling doctors that the headaches felt "lightening" sharp and I knew they were nerve related; they all thought I was crazy or an addict wanting pain medication.
NOTHING ever helped to alleviate this nerve pain and headaches lasted 3-7 days at a time. Now it makes a lot of sense that the headaches were actually neuro Lyme.
I suffered so needlessly for 20 years...
Why did it take 20 years and at least 10 doctors to diagnose me? No one ever considered LYME a possibility and test for it? Never remotely considered it..I'm so angry.
The most aweful thing is, here I was getting trigger point injections of Corisone into my HEAD every 3 months for the last 2 years!! HA!
When I was diagnosed with LYME [WB positive; CD 57 low], I was told I could not receive Cortisone AT ALL EVER. I could not fathom the damage it did to my immune system.
What immune system? You mean NO immune system! Those buggers must have had a ball multiplying.
Maybe I have a Malpractice claim. Probably would cost me more than the cost for treatment in the end. Has anyone attempted to litigate for their LYME as in "failure to diagnose" and "failure to diagnose in a timely manner?"
After 2 months of oral and 4 months of IM treatment with Rocephin, I have had a glimpse of what it feels to be "normal". That's 4 whole days out of 186 that I felt energetic, very little pain, and clear thinking.
It was so fantastic!! I felt encouraged..a little anyway. 4 days out of 6 months. Sad to say I couldn't remember the last time I felt that good!
Does this mean I am getting better?
What really perplexes me is I did NOT have the extent of neuro symptoms I now have BEFORE I started treatment like bobbing tremors of head and hands, extreme twitching, jerking, severe facial neuralgia, daytime sweats.
Why is that? Why has treatment propelled me into these neuro symptoms showing up after treatment?
The Facial Neuralgia is like having a bad toothache all the time. It's horrible. Has anyone developed this condition? If so, I would like to speak with you further.
All I can determine is that those buggers were in a hibernative state, as was my immune system, and with treatment, they became active and hostile.
What do I do? Start IV treatment? My buttocks are sore after 4 months of IM. A Mediport placement is kinda a drastic step, but I know with long term treatment, I will eventually require it and feel blessed I did have it.
I am scared to death of infection, blood clots, and dying of renal shutdown. That's the blessing of knowing too much in the medical field.
My husband is not on the same page with me AT ALL. He is trying to talk me into going back on orals. How can I expect him to understand when he had 20 years of trying to deal my migraines?
I know all he sees is the cost and inconveinence of IV tx. disrupting our lives. I think he really still has doubt I truelly have this disease; so this response does not surprise me. It just makes the decision even that more difficult.
If I do choose IV antibiotics, are there any other short term methods of administration? LLMD does not like PIC lines, so that is out of the question.
Would you do the Mediport first thing?
Anywhoo, thank God for this message board and thanks to everyone for listening....
I wish everyone the best of treatment response and quality of life.
Cheers to days free from pain, sweat, and tears.
Lisa
Posts: 51 | From La. | Registered: Jul 2007
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TerryK
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ICEY, I'm so sorry to hear about your daughter. I pray that she gets the help that she needs ASAP.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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groovy2
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Hi ALL
I got bit in 1986 - 21 yrs ago -- I have Lyme and Babs -- I was almost dead when I had my first LLMD visit -- 2004 --
Now 3 years later --- I am 95% Better --
Almost completely Symptom FREE --
Cost about $50,000 to $75,000in medicine and Doctor bills ---Ouch --
Worth Every Penny --- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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groovy2
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posted
Hi ALL
I got bit in 1986 - 21 yrs ago -- I have Lyme and Babs -- I was almost dead when I had my first LLMD visit -- 2004 --
Now 3 years later --- I am 95% Better --
Almost completely Symptom FREE --
Cost about $50,000 to $75,000in medicine and Doctor bills ---Ouch --
Worth Every Penny --- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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