posted
I hope to not offend anyone by asking this. My husband and I had an argument last night about how long it takes to get better. I'm only on my 5th week of treatment and show no real improvements. I'm on i.v. Rocephin, which seems to make my husband think that just because I'm on i.v. that I'm going to jump ahead of the pack and get well in WEEKS.
I told him that I've seen people on here treat for 2 years, 3 years, four years. He finds that hard to believe that it doesn't get better in such a long amount of time.
I know yesterday I posted about how long everyone here has been treating, didn't get many replies but some people had been treating for a long time.
I wanted to ask everyone who has been treating a long time what symptoms remain and what kind of improvements have you made? I told my husband that if my neck pain improved, I would call it a win for the most part and I don't think I would keep treating just for my painful ribs, sore throats, ear pain, twitches, etc.
Of course I would give it a good 1 1/2 years, but at the 2 year mark, I personally, would just think it's more "post Lyme" damage rather than an active infection. Maybe that is a little stupid on my part but it seems like there has to be a point where you've gone through every abx combo in the world, herbs, etc. and you just consider it damage from the Lyme, rather than active Lyme itself. I might be naive, correct me if I'm wrong.
My husband asked what your remaining symptoms are and why do you continue to treat for this long. I was also curious about this and I'm hoping you can shed some light on this for me as I want to explain this to him.
I told him no one, and I mean no one, could ever ask me to be in this much amount of pain for the rest of my life. I told him that is NOT an option. I said it's inhumane to ask a person to live in the pain that I've experienced over the past 6 months.
I told him that after you've treated for a year or two, I can see how people would think that if they "just keep treating a little more, try one more round of abx, one more month, another 6 months" that recovery is just around the corner. After you've invested so much time and money into this, it would be so hard just to quit when you've still got symptoms.
I know I've heard people say that their number 1 symptom that remains is fatigue. Are you ever just happy that you got rid of the pain and just accept the remaining fatigue and move on? Or is it just so bad that you absolutely have to keep treating it?
Since I started tx, I've been battling horrible fatigue, it almost hurts! But I can see where I could push through it and just accept it. I might be a little off base though because your fatigue might be WAY worse than *my* worst.
I know when talking to my grandpa, and I tell him how long most of us treat, he seems to not believe it or really understand it. He is a wonderful man but I can actually see, if you aren't in the Lyme world, how you would question how 2+ years of abx would not leave a person well?
Thanks for filling me in on this, so I can make the people around me understand more. I was in tears last night defending this with my husband but I realized that I needed more info to fully understand myself.
I hope you would take this time to educate me.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Do you have a copy of the DVD, Under Our Skin? It's a very good tool to help people understand the complexity of the disease.
One of the people, a park ranger, says that his best improvements were in his THIRD year of treatment and that he wouldn't have recovered to the point he did if he had stopped sooner.
Posts: 984 | From San Diego | Registered: Nov 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Not me, I am only in my 4th month of treatment, but a friend of mine treated for 4 years has now been symptom free for 5 years.
She is my inspiration. Also her 4 sons who contracted LD from her through the placenta; all completely symptom free for several years.
They were treated with antibiotic treatment by a LLMD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I do have a copy of Under Our Skin. I know it is very complex, I am definitely not doubting that. I am going to send it to my grandpa because he really needs to see it. I think he will be more of a believer when he sees a legitimate film about it.
I guess I feel lost sometimes when I see people who have been treating for that long. I TOTALLY admire their strength, courage, and resolve when it comes to fighting this horrible disease! I've only been sick for 6 months and I still find myself doubting what I'm doing.
I guess I need to go and read some more success stories. It just seems like after that long of treatment, that people would already be better.
Anyone else care to share their experiences with treatment? Symptoms that have improved? Symptoms that remain?
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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adamm
Unregistered
posted
I don't doubt that it can cause permanent damage, but it's
important to remember that Lyme's not the only infection that
has
to be treated long term--
treatment for TB, for example, generally lasts for 6-9 months, and
that's a bug that evolved naturally.
What we have is a bioengineered weapon that (according to Pamela
Weintraub's book) no experimental animal has ever been cured of .
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posted
I have known people, including one doc, who did not get better on IV but did get better on regular pills.
People swear by one ABX combo that others say did not help.
Some here have responded to a question like yours by saying it took 10 years of treatment before they were truly better.
What I am saying is that we are not only all different, our illness is also unique to each of us.
You are going to have to read a lot, keep listening to what others have to say, and remain tuned in to your unique needs, illness, and progress.
I spent 2 years with Dr. H. in NY getting massive doses of ABX and that did push me over a hump, and it showed me that I could feel better with time and ABX, but those 2 years were just the beginning of what is going to be a longer journey towards better health.
I do not think there is anyone who has NOT had a tick borne illness who can truly understand what we are going through - no one in my family does, except for my 2 children who also are suffering from this. I met some local people through this site and it helps so much to have others to talk to when you feel no one understands.
It is very painful and confusing when the people we love and rely upon for support do not understand. But try not to let that undermine your own health; do not make compromises as to your treatment because they do not believe in it.
Patience and determination are definitely needed when battling Lyme; loneliness and bewilderment are definitely part of this illness.
Spirochetes are stealth invaders - they can hide, they can communicate to one another, they can change their form, they can go anywhere in your body, including places were the meds have a hard time going to, they can avoid getting killed by meds. So you need to read up on spirochetes themselves to understand why this is such a long battle.
Stephen Buhner has written the best description I have ever read on spirochetes in his book Healing Lyme: it is worth buying this book just to read those awesome 60 pages and to have your family read them as well. Plus, his herbal approach also works and you may want to try it some day.
Another good book is The Lyme Disease Solution by Kenneth Singleton. I think this book is essential because he ties together what so may LLMDs are doing today: ABX plus nutrional supplements plus herbal remedies plus massage and such. This is a new book and if you want to know what the spirochetes and the ABX are doing to undermine your health and how you can help yourself even more, this is an excellent resource.
Along with pain and fatigue, I have vertigo and malfunctioning central nervous system symptoms. When I stop ABX or cut back, the worse symptoms increase, so I know treatment is making a difference.
I will treat this as long as I must, even for the remainder of my life. I used to think in terms of weeks, then months, then years - now I know I cannot make predictions with this illness, I can only take it one day at a time, day after day after day after day.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I typed a long reply, and it went poof. Darn. Sorry. If you want to hear specifics about my own Lyme journey, treatment, and symptoms, you can pm me.
The length of treatment depends on so many factors, and I remember having a similar conversation with my husband, years ago, when I was on IV. Fortunately, my husband has a good working relationship with my LLMD, and she has always been very frank about the length of treatment.
My husband found this article - then printed it and read it with a highlighter. It was a turning point for both of us in understanding LD and why treatment can take so long. You might check this out, if you haven't:
You're welcome to pm me. And my husband's always up for talking with other guys, too, if you want to connect them so they can do the "sick wife pow-wow" or whatever they want to call it.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
A brief explanation is this old one: you treat bugs that reproduce in a day with a week of antibiotics (such as strep).
So if spirochetes take 4 to 6 weeks to reproduce, do the math and you find out why it takes months and years of treatment to beat the spirochetes back.
That was the old argument - and now we know so much more about how spirochetes behave once they are established in our bodies.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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ByronSBell 2007
Unregistered
posted
It will take me 7 months IV and most likely another year on orals along with:
heprin diet supplements detox biofeedback
are you on heprin? If not, you need to be.
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I have been wondering the same thing myself after a hard time with abx last weekend. I told myself two years, then I'll be healed. Now I know it doesn't work that way.
But I've been wondering about healing and if people DO get better. For awhile there I actually though having chronic back pain, fatigue, shoulder cramping, TMJ and face-numbness was better than the herx...
I had to have a friend remind me that its worth fighting and no one should have to live this way. Thanks for bringing this up...I needed to see people's responses as well. And probably will again and again.
I'm 28 years old. This started when I was 25. I was on treatment for 11 mo. last year with no improvement, then was shuttled to a billion other doctors before finding a new LLMD. Now I'm on treatment again...its only been a month.
I look forward to getting better and worrying about things and other people. I'm tired of being sick.
I haven't been to this website in YEARS...Tincup knows me and calls me lily....
I had lyme really badly also, I had had it for 16 years undiagnosed..I was very sick ...I was on ORAL antibiotics from a lyme specialist in Hyde Park NY. He was wonderful. I gradually, after the 2 years of different abx, went to an acupunturist who gave me herbs and weaned me off the abx...I found I was 'looping with the illness' after being on the abx for so long.
with the help of weekly acupuncture, herbs and walking I gradually got better. I never used IV abx, or any of the other treatments , and I was REALLY sick. I had bartonella, babesiosis and LYme.
First we treated the coinfections with mepron/zithromax and minocycline. AFter many herx's and about 6 months of this treatment I felt much better, but still not well. I then went on diffferent abx (usualy 3 at a time or so) for the remaining 1 and 1/2 years until I saw the acupuncturist.
this was about 3 years ago. I'm doing well now...I work full time , and only occassionally have any symptoms when i'm under stress or extremely tired. But so much better.
My son was born after I passed it to him in utero. At age 6 he started to develop different symptoms...night sweats, need for inhaler upon exertion, extreme fatigue, patichei, and anxiety..big time. So I brought him to Dr. CRJ in New Haven, CT> He was wonderful. He sent his labs to igenex and he came back positive for babesiosis and bart along with lyme. He went on the same protocol as me, at the time they did not feel that IV was the way to go..we did all oral abx...he even had a neuroMRI which showed lesions on his brain. After 2 years he was better...we still see Dr. J once a year to check in (jordan is 15 now)..and he occasionally has some anxiety issue..but is doing great..oh, I also took my son to an acupuncutrist for the same treatments I was doing.. ' Today I'm happy to say we are doing well. I think it was a combo of both years of abx..and then when the herx's died down we switched over to acupuncture and herbs. we still have symptoms every once in a while..but very infrequently. I think we will have to watch it forever..but THERE is HOPE. WE made it out of the loop.
I now run a support group to help educate others. I am on the governors commision for lyme disease, and get about 50 phone calls a week to be pointed in the right direction.
Dont' give up...you will get better..try differnt modalities with the abx..like acupunture etc..I swear it was the combo that got both of us better.
BEst, Lily Posts: 14 | From Rhode Island | Registered: Sep 2008
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Nessa
I have not posted much in the last 18 months - as I read your email - so many of your symptoms sounded like bartonella symptoms that my family members have had.
I would think that it is good to treat the lyme - but doxy and rifampin and zith are drugs which in combo treat the bart. My son took those.
I took levaquin for my bart in combo with ceftin and that relieved my bart symptoms.
Do a search here of bartonella symptoms. Ask your doctor about how he treats/and when in treatment he treats for bart.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
no actually I was 'nurselisa' however tincup always called me lily! Haven't been on here in about 4 years or so...
Lisa
Posts: 14 | From Rhode Island | Registered: Sep 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Nessa,
Try to listen real close to your body. I've already stressed to you how important proper nutrition and detox are to the foundation of your healing.
I never had any idea treatment would be for so long, but I never thought of quitting. How do you quit and just live with it?
For me, the majority of my symptoms resolved in 30 days with homeopathy alone. This was my first treatment. At the time, I had had lyme undiagnosed for at least 10 yrs. These symptoms have never returned.
I'm left with a serious autoimmune condition called Rheumatoid Arthritis. I still have positive bloodtests for Babesia, Mycoplasmas, CPN. My doctor feels sure when these are gone so will my RA be gone. I sure hope so.
Meanwhile I am living a very normal life. This was not so initially. At first my joint pain was so severe I was housebound. Then I began to progress, 1 step forward and 2 back. After about 6 mths it became step forward, step forward and occasionally step back. During this time, my only antibiotic was 100mg Minocycline Mon/Weds/Fri. The rest was nutritional and detox under supervision of a well trained doctor.
In year two, I was bit again and now babesia symptoms emerged. I began aggressive antibiotics for H. Pylori (gut bacteria) and Babesia. During the 7 mths I took these drugs, I had no symptoms. Felt great. Kept testing positive though. Dr finally took me off the drugs and began IVs of MTE9 which is a herbal combination for Babesia. I experienced no herx and received my first negative Babs test after just 4 treatments. Hooray!
When I went off the abx, the joint pain returned at a smaller degree. My opinion is that abx drive the bacteria inward so it is dormant while on the abx but just remerges once abx stop. So, I'm not so inclined to the abx although I will take whatever my doctor says to take. She has the experience, not me.
Luckily, she feels much the same way. She uses herbal combos to aid the abx and reduce the time I have to be on abx. This seems like a good thing to me and my good health is testiment to that fact.
You have to go with what seems right to you. I have a friend who did IV abx and after being on disability for years, is now back at work. She had done natural prior to the IV abx, so for her, they worked wonders. You and your doctor have to decide your best course of action. If it doesn't work, you can always try another course.
Whatever way you choose to treat, nutrition has to be the foundation. I firmly believe that without building up your body through your diet, supplements and detox, you will not have a good a chance of getting well.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
nessa and others who want to learn:
this article is by tom grier-in the beginning his writings were the best thing for me. they are scientific and documented-but not so scientific i couldn't understand them even when i was sick-they are also good to give to family etc to help them understand-i really like the way he describes the testing
anyway-i would google his name and read all of his stuff along with the following from cactus
"My husband found this article - then printed it and read it with a highlighter. It was a turning point for both of us in understanding LD and why treatment can take so long. You might check this out, if you haven't:
posted
For me, the first 3-4 months of treatment I felt worse than I did PRIOR to starting treatment. I thought for sure I'd never get better but in the absence of there being another cause for my symptoms, I kept treating. 15 months later, my 'bad days' are better than how I felt prior to treatment.
"post-lyme" is always a possibility but I believe you are too early into treatment to even consider this option.
Continue on antibiotics until I'm better OR stop seeing any improvement AND
to have a trial run with almost every class of antibiotics
Hang in there and keep fighting!
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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I understand your frustration. I have been sick for over 4 years now. And I did start out with 1 1/2 years of heavy duty combinations of pharmaceuticals, including IV Rocephin.
Your own situation will depend on how long you were sick before treatment, and if you have coinfections.
My problem was that I have coinfections that were not treated immediately. My improvement has been very gradual over the years. I do not think that there is such a thing as post-Lyme. This is a very complicated disease that is hard to treat, I think that I just need to keep trying.
I will never give up - there are so many treatments out there for us. I try new ones, and do them for at least 3 months before giving up on them.
I also should say that the second year was the most frustrating because I thought I should have been better by then. But by now, I have accepted this illness.
I should disclose though, that I have very few symptoms, and they are mild, so that makes it easier to deal with this life.
Your husband needs to change his attitude and help you. I was lucky, one month after I got sick I took my partner to a nearby Lyme conference that only takes place once a year. He was able to learn from professionals, not just me, what this disease means not only physically but what it can do to relationships.
So if you have a way that your husband can learn about Lyme in a way he will take seriously, it will really help. You should also know that you are not alone, many patients' partners have difficulty understanding what it means to have Lyme.
So hang in there and keep getting treatment!
Posts: 449 | From Vermont | Registered: Nov 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Angelica,
When my pain and swelling was at its worst, I read an article by Dr. John McDougall regarding hope for arthritis. He espouses a vegan diet and has done much research on it. www.drmcdougall.com
I tried the vegan diet for 2 weeks and had amazing results. That convinced me that diet had a lot to do with my illness. I found an integrative doctor who spent a year helping me identify food sensitivities and kept a check on my system with bloodwork. We identified egg whites, red bell peppers, lettuce as food triggers. Also, cow diary proteins and soy proteins. Cutting these foods out of my diet eliminated a great deal of my pain and allowed me to get out of the house, return to work and start living again. Supplements were vital to build my body back up and protect my heart. Inflammation damages lots more than the joints and that is why so many people with rheum. arthritis die of heart attacks.
Red meat is also known to cause inflammation so I eat it sparingly. I didn't remain vegan. But I eat meat 3 or 4 times a week, not every meal. I was extremely toxic. Really, really, sick in a very bad way toxic and detoxing me had to go agonizingly slow. Guess what aids the body in detoxing? Vegetables. Particularly cruciferous vegetables. They help the body produce glutathione.
Glutathione is critical to good health. I was given IVs of it for months and it was soooo incredibly helpful. I still take glutathione in the form of suppositories and NAC supplement.
I also supplemented digestive enzymes to help my sick gut process food.
I credit this doctor with saving my life.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Angelica
Unregistered
posted
luvs thank you for sharing that information.
I eat far too much dairy in the form of cheese. I really have to kick the habit.
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posted
Nessa, I never "got better" while I was on IVs. In fact, the antibiotics were pretty hard on me and I was tired and bloated all the time. Within a couple months of stopping the IVs, I started feeling much better. 2+ years later I'm doing great.
Don't believe everything you hear on here because some people do get better realitively quickly - they just tend to disappear from here when they do.
Posts: 133 | From Rocheser, MN, USA | Registered: Dec 2004
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posted
It took 2 yrs before I REALLY turned the corner... a yr and a half before I began to see the light at the end of the tunnel.
I didn't stop treating until 4 yrs had passed. If I had had a rife machine or the Xango earlier...I would have stopped earlier.
At any rate, I'm doing well, all things considered.
I still have some fatigue, pain, brain fog and depression.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
It took me five years to get completely well. IO have now been well - well over 7 years. There is a lot more to Lyme than just Lyme. Lyme is a multifactorial disease.
If you want to do it more quickly, look into the Bionic 880 Woitzel treatment. People get well with an average of 5-8 treatments within 3-4-5 weeks. I have posted about it several times. Look up www.biophotons.de
Yes, it works, my husband at the ripe old age of 82, finally got rid of all Lyme and co-infections, in 3-1/2 weeks, after having contracted it many years ago from me. Several who have heard about it here on the board are now in Germany being treated. We were overthere in July and got the treatment. Dr. W. has treated over 2000 patients over the last eight years - with a 95% success rate.
You may want to research it a little.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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