lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I need to know how many of you out there were no longer able to take antibiotics after X number of years, and how you treated without them.
It seems my body is rejecting every antibiotic with huge adverse reactions including nerve damage. I almost cannot continue on anything.
That will be really bad for the babesia which requires zith or biaxin.
The lyme is pushing back in at the same pace the antibiotics are being withdrawn. After four years of treatment, the best kind, I am back at ground zero.
I am in shock.
I am suffering tremendous fear as the knowledge of the pain to come and slow death is making me sick to my stomach. I literally want to throw up I'm so scared.
I feel no joy in life anymore. My children keep asking me what is wrong.
I am considering rife machines, but afraid it is another hoax that will let me down.
Summer has arrived. I reflect on the past four springs when I said to myself that the NEXT summer I would be free of lyme and able to play with the kids.
Now I look at them and realize I won't see their children born.
I am famaliar with what will come, being bed ridden, the irregular heart beats, anxiety, nighmares, depression, arthritis, severe pain, exhaustion,.....
I'm not sure I can do this. And it is such a slow death.
What will happen to me now?
I'm so depressed and scared.
I never thought my life would go this way. Does anyone? I'm still in shock four years later that all my dreams had to remain behind the fog.
Somebody help.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Mary-how about a herbal approach? What does your LLMD say? Maybe your body needs a break and a chance to rebuild your immune system.
How long have you had lyme for-perhaps you need a second opinion from a Dr who uses a different approach. Hang in there. Lyme doesn't coming roaring back that quickly-were you tested for co-infections?
Posts: 561 | From eastcoast | Registered: Aug 2006
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posted
Mary, my heart goes out to you. You have put into writting, exactly how I have felt for the past 5 years... my oldest child is 5, and I have been unable to do so many things with her...and my son who is 4. I was dx with fibro and MCTD, 3 years ago, but always knew it was something else...and now I have it figured out...going to my first LLMD appt next month....
If you want to talk , feel free to pm me anytime... I know how you feel. jaime
Posts: 151 | From ohio | Registered: May 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry you are suffering so much.
Not knowing what you've done in the past makes it hard to know what to suggest. Some things I am considering once I have done a reasonable course of treatment for babs, lyme and bartonella with the standard abx are:
metal chelation - you may not be able to get rid of infections if you have a lot of metals in your system. Apparently metals can cause similar symptoms to lyme. Killing bugs releases metals. Were you on a metal chelator while in treatment?
viral meds - have you been tested for HHV-6 and some of the other viruses? Parvo etc..
biotoxins - have you been treating biotoxins during your treatment? You may be one of the 25% who cannot get rid of them thus you are still sick and will be until you get them out of your system.
Yeast - can cause similar symptoms to lyme and can make one feel very sick.
Immune boosting regime.
I suspect you've already done all of this but if not, please consider it.
I also think that herbals are a consideration. Also transfer factor but haven't looked into that yet. I already use rife and have had some success with a deep crack in my heel. Hard to tell if rife is helping once I started abx.
Hope you feel better soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I am worried for you- do you know you have a good doc?
'Biaxin' (clarithromycin) is not for babesia. For that, you need "anti-malarial" drugs. But there is a very good anti-malarial herbal combination for fighting babesia-- garlic and artimesia anua. I ate all the garlic I could manage- 3+ cloves a day, and took 1 gram of raw artimesua anua, powdered, as two 500mg capsules; these capsules are available from "vitanet", I think it was.
Once I nailed the babesia, I was able to get rid of the lyme within a year. Now I'm just "on" organic food, supplements, and also high doses of music, which for me is a very powerful drug, but may not have quite the same effect on everybody....
DaveS
ps-- gingko biloba and vitamin B-50 helped me alot with the depression.
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
It sounds like you are in a very serious situation.
Why dont you ask your LLMD to contact other LLMD's and ask them about if they had patients like you, and what that patient is doing?
Also, have you used not the normal antibiotics to treat the lyme? If you read in Dr B's guidlines it says that Rocephin is not always effective and he offers alernatives to this.
What is YOUR LLMD saying about your situation?
As well, is it possible a coinfection is keeping you sick. Have you tried another knowledgable LLMD and told him/her your situation?
I hope someone comes that was in your situation.
Please list what you have done, if it was IV, any coinfections you have done. I am not as knowledgable as others on here, but I am
learning as I go along. Been at it 3.5 years.
Keep searching, there is bound to be ONE person that is going through what you did, and you will find them to see how they got better.
Regarding rife being a Hoax, I dont think it is, I used Rife, I have a little rife machine, I bought a noriftrife to see how I would react to rife, some had suggested to try it first to see how you would do, I responded very well,
but I had it stop getting me well, and it could be because the machine was not strong enough, that is what most said, but I did not want to spend the money to buy a better one, because I was getting very sick, very fast
SO I chose antibiotics again, and glad I did. Rife does work, I hear, but always have antibiotics there if you need them, just in case.
I am getting sick again, and despite anitibioitcs I am not getting well, i am so sick from antibiotics, as well, 20 months on them. I am doing the Bartonella treatment now, the Rifampin, but it is not going well, I am on the 4th day, but it is not the right treatment I dont think.
How about finding an experienced ART therapist? maybe they can tell you what is going on? some suggestions.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I would ask the doc to check for babs on the fry test..you will need to test your blood directly for pathogens..that means staining...I think that there is another pathogen that is getting hit causing you to have a hard time with antibiotics..that is my feeling and I am not a doc...so talk to your llmd.. eric
Posts: 593 | From long island ny | Registered: Apr 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
If you have been with the same doc all along , I would switch. Even the best don't get every patient well.. It is good to have someone else take a look.
Also, rife is not a bad idea ............. get the rife book and at least read about it.
I am sorry you are so, so down. I , as we all have, have been there.
Prayers, hugs and chocolate to you,
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
My wife uses Rife exclusively and has had all symptoms except for occasional joint pain resolved. We now treat every two weeks for about an hour.
We use the GB-4000 and amplifier. I think it is one of the best for Lyme.
You need to pick a treatment you are comfortable with and Rife may not be it. I can only say that it works for many but not all people. It is not a hoax, that much I can assure you. But there are better and worse machines.
I really hope you can get better, one way or another.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
See my post and then e-mail me for more info.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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quote:Originally posted by HaplyCarlessdave: 'Biaxin' (clarithromycin) is not for babesia. For that, you need "anti-malarial" drugs.
I'm actually taking Biaxin with Mepron for Babesia. Biaxin can be used in place of Zith with the Mepron to prevent resistance.
I think the poster who said to look at other issues - metal, candida, etc. - has a really good point. I know my LLMD has tested for and is treating all kinds of side issues.
Are you doing anything to detox? Taking the meds to kill the bugs is only HALF the battle. If you aren't detoxing, you won't get better.
I know people who have had a lot of luck with ART. I don't know much about it, but it might be something to look into. It's helped them start detoxing and choose which health issue to address first.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I read your post. I want you to know that I am asking God our Father to send down
His Angels and have them lovingly wrap you in their Wings.
I am praying for peace for you and that the Lord send you in a better direction.
I am praying that you get better.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
my llmd recently told me to go sit in an infrared sauna. she said start at 10 mins and work my way up to a half an hour.
Posts: 234 | From nyc ny u.s. | Registered: Jul 2001
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I thank all of you lovely people for your responses. I'm crying just reading them.
I should have taken the time to report what I have been through as far as therapy in my initial post.
I was infected at 11 years old. Infection not diagnosed, but had many neurological problems including intense fear and nightmares, cluster headaches, anxiety, severe depression......
In and out of physical therapy all during graduate school.
AFter first child was born, feeling joint problems and chronic fatigue. Second child was born (I think with lyme) and soon after told I had Fibromyalgia. Third daughter still born (probably from lymr). I am still not diagnosed.
Move from Alabama to Connecticut. Fourth daughter born. Two years later and after much gardening, I hit the floor and have symtptoms of brain inflammation, fever, walls spinning, fever....
Doctor says I have increased FMS symptoms! (STupid duck)
Struggle along with irregular heart beats, daily intense, evil, horrifying nightmares, joint pain, headaches, fatigue....
2002, after being a Girl Scout Leader and doing more gardening, collapse again, but this time with bells palsy added. Doctor says FMS getting worse. AT this point, I realize that my doc is a duck.
In the past four years, I have seen the following llmds: Dr. P in Connecticut. Dr. K in Connecticut (neurologist) Dr. H in New York (went to him because he has a lot of experience with BAbesia which I could not and have not been able to get rid of) Dr. M in Alabama, which I have decided is marginally lyme literate Dr. J in North Carolina, God bless him for all his current political suffering. Dr. F in Louisianna.
I have chronic babesia that nothing has helped. Had every treatment under the sun.
Had I.V. rocephin in the beginning lasting 5 months.
Did the following: 2,000 tetracycline biaxin, zithro, plaquenil, mepron, cleocin, quinine, doxy, minocycline, ceftin, cedax, cipro and levaquine that damaged my tendons and nervous system (took two years to recover from that). Flagyl (damaged my nervous system and left me with neuropathies and other bad stuff) Tried Tini but could not tolerate after the flagyl blowout.
O.K. Then there is omnicef, keflex....let's not forget those...oh yes, malerone high doses.....
O.K. I forgot to say that I am on a "Metagenics" detox protocol, taking vitamins, did art for several years at high doses, take nystatin and diflucan for yeast, take ascidolpholus and eat yogart. Take ultram currently for pain.
Something tells me I'm leaving something out.
In the first year of treatment, I in and out of the emergency room for heart palpitations and sever anxiety, hyperventilating...etc. lyme related.
In the first year of my treatment, I occured to me that my children were no longer well, and they went on to have a lyme diagnosis, begin treatment, herx, and make some improvements. My husband then followed in those footsteps. They are all doing better than I am.
I cannot imagine that there is a more vicious pathogen than borreliosis. The pain and cruelty it inflicts is unbearable.
I watch my children now, since they are of my genetic make up, and wonder which one of them will give out on the antibiotic approach to treatment. I'm holding my breath. They are all so beautiful and intelligent and talented. Must we all be wasted on the world?
I am a lyme activist. I have written many letters to politicians and newspapers. I am well educated in the stealth nature of the disease, and to the political world of lyme disease.
I cannot say that any lack of basic information is behind my failure at therapy. I have not to this date added alternative therapy though.
I do have one pressing question. To what degree does significant obesity prevent successful lyme treatment. This is the one way I am different than the other members of my little family. They are doing better than I am, but have not had as many points of infection, and do not have a co-infection.
Please, more responses. I am sinking.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Lymewreck- I am exactly at the point you describe. You are not alone. You have put into words exactly how I feel....and what is happening. I am no longer able to handle antibiotics. Haven't been for over a year, and getting sicker and sicker. And I'm scared.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I bought the book "When antibiotics fail" and also the book of rife machines. Trying to get through those right now.
Not sure which kind of "rife" machine to buy.
Worried about salt protocol raising my blood pressure. Looking into this alternative therapy.
Which herbs are the strongest for anti lyme activity?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I have been treated for only one year and seems much better than some people here who have been treated much longer.
I work full time and steadily improving, though very slow.
I did get scared when relapsing while on Bab treatment, which might suggest that I didn't have Bab but Bart.
I switched to Bart treatment and immediately improved significantly.
One month ago I started Doug rifing and seems it's helping.
I also decided to pulse all meds: one week of Rifampin MWF and another week of Mino MWF both with Arte.
I could be wrong, but long-term, high dose of abx without improvement may indicate that you are targeting nothing.
For slowly growing pathogen, you might not need consistent high dose of abx but pulsed low dose of abx and a strong immune system.
I think garlic juice is helping my stomach and thus I would have a good absorption of nutritions to strengthen my immune system.
Anyway, my thought is that don't stick to a regimen for a long time if you didn't feel any improvement in a reasonable time.
Posts: 1078 | From Fairland | Registered: Apr 2006
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I would DEFINITELY try Rife. I would buy the Dan Tracy model. That way you won't be out very much money if it doesn't work for you.
I do believe it WILL work for you as it has for so many.
You must BELIEVE you can get well!!! I know that's hard....but work on it, OK???
Hugs and prayers to you and your family!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Gallbladder.
I think I recall reading on here that a woman said she had to get her gallbladder out because she could not tolerate antibiotics anymore.
Her LLMD said that is why she could not tolerate antibiotics anymore, her gallbladder was the cause.
Could it be? that all the killing lf lyme could make your gallbladder toxic? all the toxins from lyme are fat soluble are they not?
What about seeing a ND about gallbladder cleansing or flushing?
Some thoughts, ask on here an individual post if anyone else could not tolerate antibiotics anymore because of a sluggish or toxin gallbladder.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote: I have chronic babesia that nothing has helped. Had every treatment under the sun.
You need to talk to Barb Peck and Liz28 about this.
If I remember correctly, they had problems getting rid of Babesia, but finally figured it out.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Mary, So sorry you are dealing with this.
Do you know about Buhner's book? I didn't see that in your list.
Lots of herbal possibilities there. A particularly well written Introductory chapter and numerous references to studies in the back.
An LLMD somewhere should be open to looking at the potential for herbal protocol with you.
If not, keep your LLMD, and consult also with a naturopath or integrative physician.
Sometimes I think it's not sufficiently understood that we have to process out the die-off. Oddly, even though Herxing is understood, I'm not sure "die off" processing always is. When the bugs are zapped they give off toxins - we have to rid our bodies of them. Abx only half the battle.
So here's your plan, while you remain hopeful and focus on the positive:
As your mind explores new avenues...
Give your body a little time to let things settle down. Your body may well need some time so you can sort out the issues you are facing -- dysbiosis from the abx use; any food intolerances from immune system overload or GI changes, to name just 2 examples.
Food intolerances alone were making me very sick until I learned about them and eliminated the offending foods: edema and joint pain improved enormously! Still not sure if intolerances developed from abx without taking enough probiotics, or effects of long-term Motrin.
Incidentally, weight problems can be related to food intolerances. (I often wonder how many people trying to lose weight know if they could be gluten or lactose intolerant).
The test for this is for delayed food reactions; not the immediate food reactions test an allergist would do. There are labs that specialize in this. It may help you to get an IgG Food Elisa Panel done.
Work w. LLMD and/or integrative Dr. to see where the body is.
Get liver and kidney functions checked. Tetra raised my liver functioning, and not even my PCP caught it. Integrative doc caught it.
No panicking here, ok? Let your body settle down while your mind goes to work on all the possibilities for what needs to be addressed and how to do it.
When I went on my first abx break my LLMD told me I would not get worse quickly. I'm not a doc, so won't generalize beyond myself, but that does sound encouraging.
Find Buhner's book, ok? A real resource on herbal alternatives to abx.
I have never used Rife, can't speak to that.
Hang in there.
Keep us posted, ok?
Posts: 1066 | From East Coast | Registered: Dec 2000
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tabbytamer
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Member # 3159
posted
Mary,
I couldn't help wondering, when I read about your four children and husband, are you getting enough rest?
Not just sleep, but rest ?
In Dr. B's guidelines, he emphasizes the lyme patient getting rest as much as getting the right meds.
I often wonder if that is one of the reasons my treatment doesn't seem as effective as others'.
Physically, I am always having to push myself to try to do anything. It would probably be best for me not to try to push myself at all. Additionally, my mind is never rested. Always feel stressed out.
Please don't think I'm trying to downplay your suffering. Or think the answer is as "simple" as getting complete rest. This is a very complex illness. There are no simple answers.
You have got to hang on, though, Mary. For yourself and your family. And until docs get you well, take this time to rest knowing that even in that capacity you are a valuable and loved individual.
Much Love Rianna
Posts: 1172 | From UK | Registered: Jan 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Lymewreck,
I went to bed thinking of you and praying for you and woke up doing the same.
Your babies will be okay.
I just found out my four and five year old have Lyme also.
I ask God daily for his Divine Protection over my children and to let them be cured...
I believe this will happen for them.
As a mother with Lyme, having a husband also with Lyme, I find rest to be extremely elusive.
I try, really I do, but I don't have the luxury of taking a nap....My husband does though.
I think that some of us are just sicker than others.
My husband has never felt as sick as I do....Just found out his CD57 numbers were below 30.
He said "but I don't feel sick." Lucky him.
God did not bring you this far to leave you here.
Tie a knot at the end of your rope and hang on....
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Get on one abx one that is bactercidal kills them on contact. Stay on that one for 3 or 4 or 6 months or longer while taking good suppliments and try to relax. Giving your body time to catch up on all that it has lost and drink lots of good clean water.
Then since you have been on all those meds for babs stay off of them while doing the break then check to see if its still there the babs then try if its there?babs treatment
You really sound like your body has just been so worn down it needs recovery,Good suppliments ,Mag,b complex,one a day,cq10,melatonin,and as much of the freshest meats,and greens and water flushing system.
I have gone through what you have and there were a few times especially this past winter I wasnt to sure I would make it ! But Iam still here prayer too! I havent done IV but I have done orals since march 2001 only off abx totally for 9 months 7 because I thought I licked the lyme I was wrong, and 2 for a break the body needs time to flush and rebuild.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
I know you feel like no antibiotic will help at this point. I didn't see Zithromax in your exhaustive list of abx's that you took.
I know you took it with Mepron for a little while but I would take it for longer. My magic combo was doxy and zithromax with flagyl a third of the treatment weeks.
This was after babesia treatment.
I also followed the most boring diet while on them for a year...no alcohol, no sugar, not much white flour.
I also do not have children and had the luxury to literally not move for a year and rest. I know most people don't have this though.
I am sorry and hope you find some answers soon. If I were in your shoes I think I would try the Buhner Herbal Protocol and see if it could help you gain a foot hold.
Take care...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear Mary,
So sorry to hear that you are feeling this way. I know, I have shared these same thoughts too. This is the most difficult of diseases.
I just read your second post, saw that you started with 5 months of rocephin. It seems one of the only abx that you have not tried is the high-dose amoxicillin that has helped me this year. Since it is an oral, it is easier to stay on than IV.
I know that you have seen alot of doctors, but maybe one more could help? I see a great llmd in the area, and you can PM me if you are interested in their name.
I agree with tree's post, and hope you are able to take the time to have the freshest diet and lots of rest. My best wishes for you and your family.
Posts: 2557 | From home | Registered: Aug 2006
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posted
There is so much loving information in all these responses!
Mary, since bad stuff can be stored in body fat, you may be onto something with the obesity. Have you been tested for celiac disease? Other food intolerances? Have you tried a rotation diet?
Do you get exercise at all? I've read that exercise is critical to recovery. Dr. B recommends one hour three times per week of mainly some kind of weight training/strength training. I've thought all along that my regular exercise has kept me from being as sick as others. Also critical is rest/sleep and no alcohol/sugar/caffeine.
Do you get out in the sunshine? I feel so much better in the sunshine that my LLMD took me off the cyclines for the summer.
Do you have amalgam fillings? Have you been tested for heavy metals?
What about being tested for thyroid and cortisol? Both those can contribute to weight problems, too.
I know you've already seen Dr. H. He's my LLMD and has me on lots of supplements in addition to the abx. Did he have you on this kind of support to the abx? He also has an herbal protocol. He may be worth visiting again ... I think he's one who will look at the whole problem and try to come up with a solution.
I know I've lived with this for so many years and been relatively healthy for most of the time until this last flare, which has been the past four years, because I'm a health nut ... I exercise four times per week (cardio and weights) ... I lay out in the sun with no sunscreen for at least 15 minutes every day I can ... I've always been aware of detoxing, I even have a FIR sauna at home ...
I'd get back to the basics of health to get your body in the best shape you can so you can fight this disease. Maybe if you get in better shape physically -- and I mean overall, not just visually, rather because you're exercising, eating right, and all the other things I've mentioned -- then you'll be better able to kill off the bacteria with the abx.
While you're working on general health issues, I'd take the Buhner herbal protocol to at least keep the Lyme/babs in check.
Don't give up. You can and will beat this. I know the fight just doesn't seem worth it ... I think that regularly, but I'm kind of stuck with it ... there's no way out. We have to fight or we just get sicker. You don't realize the example you are setting for your kids with your courage in fighting Lyme ... courage implies you have fear but plow ahead with the task anyway.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Let me see if I can address some of the replies.
For Bart, I did cipro and levaquin for about 4 weeks years ago.
Haven't tried the new babesia protocol that was mentioned. I see Dr. F next week and I can discuss this.
I am currently reading the book about herbs and lyme, the one mentioned.
Rest, never have enough. But the kids are out of school in two days, and hopefully that will change.
Had hysterectomy three months ago and still struggling to heal. I had granulated tissue develop and needed three different treatments with silver nitrate. No more granulated tissue, but the pain is still there. I figure the lyme moved in to colonize.
Referred pain from the hysterectomy site on the right side gave me the sensation of severe gall bladder pain.
Saw a surgeon and had an ultrasound of the gallbladder and there is nothing wrong with it. When the surgery pain is reduced, there is no "gallbladder" pain. Definitely referred pain.
I also did a three day gallbladder cleanse while struggling with that.
Let's see, I take digestive enzymes.....I did artemesia for over two years high dose.......I take 1,000 vit. C daily.....
Let me see if I can describe the "adverse reactions" I am getting in response to antibiotics.
It goes like this. Severe burning on the bottoms of my feet, palms of my hands, and vaginal area (volvodynia). This initiated last year after a severe blow out from high dose flagyl, and has never gone away.
Oh yes, I take daily B-12 injections since then.
Also, the finger tips and toes throb and have signs of bleeding under them, splinter hemmorages?, toes turn black in the moons, reddness where the toenail exits at the tip of the toe....
Also get numbness in the hands, dry eyes and nose (mucus membranes).
These are NOT herxes. I know one would be tempted to say that, but I am familiar with herxes and adverse drug reactions. This is an adverse reaction.
It first started about two years ago, and I could swith it off by changing antibiotics. But by the middle of last year, I could no longer switch it off. No matter how many different things I tried.
It seems to me that some kind of autoimmune switch is getting flipped.
A week ago I dropped zithro which I was on high dose for a VERY long time, and went back to biaxin. That cut some of the adverse reactions by 50%.
I don't know what else to do. I'm investigating the herb thing, but don't have much faith in that. I will give it a try anyway.
Investigating the salt/C protocol.
Investigating rifing.
STruggling.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I am so sorry to hear of your pain and to see you in such desperate straits. I so feel your pain.
I am writing to let you know that you CAN get better, regardless of how long you went untreated. I did, after more than a decade of being told I had Epstein Barr and 'Chronic Fatigue'.
At this point, no doubt your immune system has plain old given up. (and who could blame it). If you can treat the coinfections, you can make your body 'learn' to live with lyme and make it take a back shelf.
I didn't see Rifampin on your repertoire. You mention Levaquin and Cipro for Bart - Levaquin did diddly for me. It took almost 9 mos of Rifampin but I got rid of Bart and got my life back. It's been more than 2 1/2 years and still off abx.
But ABX is just the tip of the iceburg. Nutrient and mineral levels, detoxing, rebalancing the flora in the gut and candida treatment are a must. I STILL require acidophillus, although haven't taken in an abx in over 2 1/2 yrs. Although I also continue to take Cat's Claw (toa-Free).
For your irregular heart beats, have you looked into Beta blockers? Have you had your Magnesium levels checked? If you're depleted, no amount of orals will help you catch up. A few IV's and regular IM injections could produce some magic results. I had a LOT of heart involvement, and an IV literally turned my life around....
Detoxing, detoxing, and more detoxing is needed. Infrared saunas are amazing. Foot detox patches are extremely helpful, as is using a rebounder (mini-trampoline) - easy to use and just a little goes a LONG LONG way.
Perhaps an herbal anti-inflammatory could give you a bit of relief - check out Zyflammend - this stuff is incredible - it got me off Bextra after being on it for 2 years. http://www.newchapter.com/
My thoughts are with you to find the strength to continue your battle. You need to win the 'fight or flight' battle and you CAN do this..
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
you said It seems to me that some kind of autoimmune switch is getting flipped.
Get off everything except a bactercidal abx then rebuild your intestinal flora ie yogurt theralac? acidophilis, bcomplex, etc80 percent of the bodies immune function starts here.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Another short term option would be to use Samento and Cumanda to knock down the bacterial load. We used this in the beginning and it worked for awhile. But, the progress stopped after a few months.
That is when we started using the Rife machine. Then the really bad first Herx occurred with mouth sores and flu like symptoms. I believe we killed off more Lyme in this first treatment than any other before or since.
Neither treatment caused any side effects in our case other than Herxes. No stomach problems. Ginger helps the stomach out also and is antibacterial but only to bacteria foreign to your digestive tract. It actually helps normal bacteria. Licorice is also supposed to help, but we have never used it. But, if you like licorice anyway why not try it.
Good Luck
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Without going into specifics, I want to tell you that I feel exactly the way you do. I haven't had treatment of any kind except probiotics. I have a list of herbal treatments I would like to try but the cost of the prescriptions I take for other medical problems, maybe related to lyme, have me in a money pit.
I live alone so I don't have the pressure of having to do too much, but occasionally I feel well enough to walk outside and sit in the shade. (I am totally allergic to the sun.) The natural light makes me feel good for a while but I can only stand it for about 10 minutes.
I can't drive currently. I have two grown children who are very involved in their own lives and haven't been around much. I rarely see my 2 grandsons.....my daughter doesn't want to cause me any more stress but it would be nice to see them for just a short time.
I have pretty much lost the ability and desire to fight anything. I am too tired and my brain is mush...I can't advocate for myself...don't even know where to start.
I used to post here a lot but I can't seem to get on the computer without getting a terrible headache. I can't talk on the phone for more than 5 minutes and that is always someone who knows my situation so I don't have to explain.
I live vicariously watching movies with people enjoying life and visiting new places. I am no longer angry at my disease(s)....just wasted energy.
I am taking antidepressants.....doc increased recently. I finally got off Seroquel for sleep. I gained 60 lbs. while on it.
It's really hard to be cheery about anything. I thank God every day for my blessings of a place to live and other basic things.
But I think I have lost the will to live. The love of my life left me long ago when I had been sick for about 3 years and is gone forever. I certainly don't have energy for any relationship. I feel the best years of my life are behind me and I am just taking up space here on earth.
I know a lot of people go through these feelings and come out the other side somehow. Maybe that will happen to me. I really need a miracle. I am ready to let go of life when the time comes.
I am so sorry you have had such an incredible struggle. Wish I could give you an "I KNOW" hug.
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Dear Janet and other folks suffering the same way:
I'm so sorry to hear of your own stories. God, please heal us. I raise up my arms in my plea!
Janet, you said " I am ready to let go of life when the time comes. "
That touched a nerve in me. I used to fear death so much it was wicked. Now, not so. The idea of a pain free state is just fine. When it comes, I hope I slide gracefully to the other side.
Love to all of you, Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Hello, I just wanted to chime in here, and say that i went off all abx about 1 and a half months ago. At that time i started using a rife machine, and the first time i used it i had one huge herx. Ive been using it since, along with using the salt/c protocol and have been doing ok. I have not went backwards at all. I know these two combinations have a one/two punch effect, and they work.
BTW, when i told me llmd (treating lyme over 20years) that i went off abx, and started using rife she gave me a big smile and told me she really approves of them, but she couldnt say to much because they are not fda approved. So, when a very experienced llmd give you a thumbs up for rife, that makes it very credible.
I am currently waiting on a new rife which i think is better, it is the Dan Tracy machine.
Posts: 42 | From Pennsylvania | Registered: Jul 2006
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posted
Okay, I'm one of those guys who was very sick, I went off anti-biotics a a decade ago, I'm better than ever, you can do this, believe me you can.
I'm not a doctor of course, but then no doctor cured me either. Here is what I recommend and don't let all the neysayers and know it alls discourage you.
1) Allimax 2) Cumanda by NutraMedix (buy 3 bottles) 3) Silver (The new silver solution or NutraSilver) 4) Apple Cider Vinegar - yep, that's right, 2 tablespoons a day, drink through a straw way it the back of your throat as not to stress the enamel on your teeth ( just in case). 5) MSM 6) Probotics and Colon Cleanse capsules, do this, it will work, especially some colon cleansing. 7) Milk Thistle
Also, by some cinamon sticks and cloves, brew tea with it, drink lots of it.
Attack this as if it were a fungal infection. Now I'm going to state a completely unscientific theory, it's not the lyme that's making you sick, it's the fungal soup it leaves behind.
Your immune system is probably tanked, anti-biotics don't help it, they feed it (the underlying fungal soup). Rebuild your immune system with these all natural products. If you get a big herx, GREAT !!
I beat lyme with these, you can too is my guess, but it will take some time.
Posts: 121 | From Memphis, TN | Registered: Dec 2004
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Dear Mary, I just wanted to let you know your letter touched me deeply. Like the symptoms of the disease, the feelings you spoke of wax and wane for me, but they are ALWAYS there.
I feel like the best years of my life are over. I'm missing out on just about everything with my children, and I always wanted children so very much. I'm only 40 but feel so old.
I don't have any advice for you as far as treatment goes. I have done everything under the sun and feel like I've made minimal progress in the four years I've been ill.
My kids keep me laughing, though. They are the reason I keep fighting.
Prayers and thoughts to you - lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Dear Mary, Janet and all those suffering with Lyme,
Please don't ever give up. There's always hope just around the corner. Ask God to give you strength and see you through this. Please know we are all praying for you.
I just started reading the newest book by Bryan Rosner "The Top 10 Lyme Disease Treatments." Mary, you said you were taking digestive enzymes.
He recommends (see Chapter 6) Systemic Enzyme therapy (i.e. Wobenzyme, but earlier posts on Lymenet by others say that Wobenzyme is outdated and the best enzyme is Rechts-Regulat).
This enzyme supplementation is not for digestion, but "to allow them (the enzymes) to be systemically absorbed and circulate throughout the body via the bloodstream."
They are anti-inflammatory, detoxifying, possibly anti-bacterial, and reduce herxing symptoms (I especially want to get rid of my teenage son's chronic pain).
I am thinking of trying this (just checking with our LLMD).Perhaps if you read this book, it will give you some other ideas. Hope it helps. Take care. God bless you. Posts: 8981 | From Illinois | Registered: May 2006
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posted
How do you feel after a hefty round of Diflucan, Mary??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Each and every one of you have said something very special. I cry with the ones as sick as I am, and am so grateful for everyone trying to help.
Here's what makes me think it is not a fungal issue AT THE CORE.
There is a direct correlation between stopping antibiotics and sickness rolling in. I cannot be off antibiotics more than two days. I am completely relapsing in nature.
Start an antibiotic, a good one, and it pushes the lyme syptoms right back.
The cause and effect has been observed countless times over and over, for four years. It is unmistakable.
I've been off cell wall inhibiting for two weeks, the first time in over 3 years. During that two weeks, the devastating cardiac symptoms from lyme resurfaced. As if I never had the I.V. and everything else.
I did high dose zith plus artemisin plub bactrim plus mepron for two years. Bactrim started to kill my stomach.
Cleocin blew out my digestive track so severely that you cannot even touch the skin over my abdomen. It feels burned. Had scoping done in December and yes everything inside is red and swollen.
I think part of the problem is that every llmd I see wants to dose my medication based on my body weight, so I am getting seriously high doses.
Well, I might be overweight, but my instestines are the same as everybody else's!
I take diflucan, 200 mg, twice weekly.
Nevertheless, I need to print out all of these posts. I shared them with my little sister and she and I agree the common thread is detoxing. There is a homeopathic doctor here, so I should give him a call and see if he can guide me.
Please advise you guys, what rife machines are proving the most helpful. I don't care about having a big herx. Bring it on. I want to get going on this.
I'm so grateful for all your responses.
mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Mary, you sound better already. You're now able to fight this nasty disease and win.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
So far, people think Doug coil machine is the best.
Posts: 1078 | From Fairland | Registered: Apr 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote:I cannot be off antibiotics more than two days. I am completely relapsing in nature.
If symptoms come back this soon it is not lyme (Borrelia) but possibly a co-infection or some other infection. This is what I have been told by my lyme doc.
Glad you are looking into detox, it is critical to healing. Please be sure to check into specific detox for biotoxins since that is a very different kind of detox and you need a specific regime for that. You might also want to consider intracellular detox. My LLMD has me on drainage remedies for that. They made me really sick at first but now I do very well on them.
Hope to hear that you are feeling much better soon.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Detoxing always is the number 2, should never come before killing pathogens in the body.
We should always first consider how to eliminate or at least inhibit the pathogens in the body.
Cause we believe that chronic Lyme is caused by persistent infections.
This is the opposite of the IDSA guideline and is what we are fighting for.
However ABX, herbs or rifing, they are used to kill pathogens in the body.
In another word, without killing the pathogens in the body, we may not be able to get better or cured.
Posts: 1078 | From Fairland | Registered: Apr 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I read in Dr B's guidlines that one can herx with lyme off and on, in between the 28 day lyme growth cycle.
SO, that being said, I would think then that maybe? there is a different strain of lyme, that does not have the 28 day growth cycle.
Do ALL strains of lyme have the 28 day growth cycle? If you can herx from a different strain of lyme beofre the 28 day cycle,
then perhaps? one can still have lyme if they get sick after being off antibiotics for 2 days.
I am like that, and am struggling. i am treating bartonella.
I did have to go off antibitoics for more then 2 days when I was treating babesia, so maybe I still have babesia. I did 6 months of babesia meds,
I am on rifampin and it is not going well, I think.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
be very careful with Rife.
I had one herx, that near killed me. I rifed 4.5 minutes and was almost in adrenal collapse because it lasted 10-14 days the herx.
It was HORRID. I was drinking tiny amounts of licorice root tea every few hours and vitamin B5 too. It was my breathing, the herx hit my breathing and I NEVER want to go there again.
At least with antibiotics you can control somewhat the herxing, once I rifed, that was it.
I found that it took 2 months to be off antibiotics to get the rife working best.
Thanks God I used a pendulum to guide me, I think I would have died from the rife herx back then. I rifed 35 minutes the first month off antibiotics, my pendulum said to do this,.
It then said to only rife 3.5 minutes the next month, i found it ODD that it would say this. I then listened, but accidently rifed 4.5 minuts,
and well, I was in a horrid state from teh herx,. I knew then that the pendulum was something I had to work with, to get well. It was right.
Lately though, it is not working well. A self testing tool of any kind, that you learn is extremely benificial.
My pendulum just is not working for me for quite awhile, so I have to let it go for now.
I went off antibiotics for 7 monhts before, but I cannot do this now, since being off them, I think i just did myself in, I am not sure. I am still trying to get well.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
Hi Mary, to answer your questoin. It seems from what all ive read and heard from others, that the doug coil machine is the best for lyme, however, the EMEM rife machine is a very close second, andthat is the one i have. The EMEM is very easey to operate, and the doug coil is alot more complex. You cant go wrong with either machine.
BTW, have you checked out the salt/c protocol? If not go to lymephotos.com
Once you go there i suggest you order the Ebook because the protocol amounts have been changed. They now recommend starting with 1gram and working your way up. I started this protocol a month ago and it is giving me herxes, so i am killing this stuff. And best of all, im not on any abx.
These methods work. Again, just remember that my llmd of 20 years is all for this, and very happy im doing it.
Hang in there Mary, there is a way out of the woods. Not empty promises but real genuine hope.
I would suggest also to buy bryan rosners book *Lyme disease and rife machines*. You will learn more about this disease in an hour than what youve learned in years.
Posts: 42 | From Pennsylvania | Registered: Jul 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Yes, for those people in the Steere camp, you are the ones that told my doctor how NOT to diagnose me while I sat in front of him for two years with a case of raging lyme disease.
AFter that, it is only antibiotics that have kept me alive. Yea, the infection can be impossible to treat for reasons you are fully aware of but cover up.
But if I didn't have a llmd to continue the antibiotics, I would have been a goner long ago.
So don't even think about twisting this thing around to your own cruel agenda.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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