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Budhaf
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| Joined: | Tue Nov 20th, 2007 |
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Posted: Tue Nov 20th, 2007 08:06 pm |
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My name is Bud and I joined this forum several months ago and then left. However, I would like to ask some questions about Lyme disease and what others are doing about it.
I believe that I have had Lyme Disease for over 12 years. I can remember having red bullseye rashes long ago, but I didnt have any symptoms other than fatigue as I remember. I used to get large bullseye rashes on my back and torso. Some were the size of a basketball. I thought that it was ring worm and the doctor would give me an antibiotic and the ring would go away. I had severe shoulder pain and had 4 surgeries over a four year period. After the surgeries the shoulders were better, although not pain free.
About 3 years ago I started having extremely bad lower back pain. My body would shake due to the pain. I went to chiropractors, back doctors, pain management specialists, rheumatoid arthritis, acupuncture, therapy, etc. and no one could seem to find the reason for the pain and nothing was helping. The pain quickly spread to my hips, knees, elbows, and wrists. All the while I was still getting the bullseye rashes on my chest and upper back. I had so many different procedures on my back, no surgeries though, and nothing was working. I could not sit at my desk for more than about 20 minutes and standing didnt help either. Once the pain levels reached a certain level, it was all over but the crying, and praying! I have tried many pain meds and fetanyl was the only thing that really helped. I did have to increase the amount and received a kicker pill when it got too bad. Then all of a sudden I started getting sick on the fetanyl and stopped cold turkey. The pain management doc gave me something else that he said would keep me from having severe withdraws, but it was not agreeing with my system either. So I spent about 1 1/2 weeks in major withdraws.
I went to see a Lyme specialist in Springfield, Mo. I am sure most of you know who I am talking about. He started me on the antibiotics and a host of other things. I was diagnosed with Lyme disease and have been on different antibiotics for over 1 1/2 years. I have "Hertzed" (?) with several of them, which means the pain got a lot worse before it got any better. I couldnt do anything! I have spent so much money on tests, drugs, travel, etc. and I am no better for it yet.
My wife is really worried about the pain meds. She was told that only about 2-3 % of Lyme patients require pain meds. I dont understand or believe that. I have a fairly large tolerance to pain, but I can not handle it. My lower back pain is regularly at a 8 or 9 without meds. I can not imagine not taking something to relieve it? Am I the only one or the 2-3 %? I know that this is not something that most people want to talk about, but I have read stories on here about pain levels. I am not worried about taking the meds as long as it helps control the pain. The Lyme disease doc is telling me not to eat potato's, onions, drink lots of water, etc. and this will help with the pain. It is not working!
Now I am not working and it is tough trying to look for work and deal with this disease. I need relief very soon. I am going to see if my family doctor can perform the IV antibiotic and see if that helps. Has anyone tried this?
Thanks for your help and I will be praying for the rest of you!
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rivergem
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Posted: Sun Nov 25th, 2007 06:15 am |
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I am so sorry Bud, that you are in so much pain.
I haven't experienced the kind of pain that you are talking about. Mine is more like having started a new work out and extremely soreness that won't work its way out. Then, compound that sensation with the inablility of getting the restful sleep necessary to recover.
I am not sure if I understand you correctly. You've been in treatment with antibiotics for 1 1/2 years, but not ever used iv abx's? It seems every doctor treat's Lyme Disease differently.
I've been treated with abx's for the past 2 years, too, with 8 months on iv, after I had an episode where I was out driving and suddenly did not know where I was. The actual line was set in a hospital, but administered, at first, by a home health nurse. Then, after I learned to do it, the nurse came out once a week to change the dressing.
I hope this helps you and I hope you get some relief real soon. I have only recently stopped abx's altogether and am still seeking answers to a lot of my own questions.
My heart goes out to you, and my prayers, too.
Vicki
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harrietbish
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Posted: Sun Nov 25th, 2007 05:18 pm |
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Bud, I can relate to your experience with the pain, as I have had that too, since 1991 when it came on suddenly and severely. The left shoulder pain was part of it, and it 'froze.' Then down the entire left side, hip and arm, then to both feet and both elbows and both knees. Lower back is constant.
I've been to rheumatologists, chiropractors, infectious disease specialists who missed the diagnosis, etc etc. Finally got a proper IGeneX blood test, diagnosis and treatment from an Austin TX practitioner who had to move out of Texas to keep on giving me the prescriptions. It has been over 2 years on steady, varying ABX and I am 90% better.
I have been seeing a specialist in Internal Medicine since 2002, who is a really special person in that he has turned to Alternative methods. To combat the pain he had me carefully and slowly increase fish oil capsules until I am now taking four large caps in the morning and another four large caps at dinner. He has me keep them in the freezer and take them frozen so they do not "repeat" and make me taste them. I am not a doctor and cannot prescribe, but it is legal for me to tell you what he did for me.
The condition of the gut is important. He has me taking a powder to 'cleanse' which contains lots of fiber. Out of my diet are starchy veggies, dairy and cereals and of course all sugars. My foods are that cleansing shake for bkfst with frozen berries in it. Other meals are lean meats at every meal, but more veggies than meats, tons of veggies and salads. I make a soup of onion, peppers, frozen okra, a can of organic tomatoes, carrots, green beans, peas, celery, parsley, yellow squash and zucchini..etc etc. flavored with comino...just delicious. If you like caraway, that's good instead of comino for a change. No potato, no rice, no noodles or macaroni. Tons of veggies. That is to balance the acid/base ratio of the diet to make the kidneys happy. After I've had five servings of veggies, I have earned one fresh fruit!
Thanksgiving has been great! Turkey, unthickened gravy, green beans, salads, and I made turkey broth from the carcass. Fresh pears are in the stores, and apples too.
I have to add the very important probiotics. At any health food store look for a mixture of several to many different strains of probiotics. Separately he has me taking something called Florastor to combat the overgrowth of yeasts. It is Saccaromyces boulardi which another MD explained to me is an organism that actually eats candida for its favorite food! You can buy it in other brands than Florastor.
To combat the pain you have to lessen the load of the damaging organisms in your body, is my guess. So if I were you I'd go back to my MD and be sure you are continuing your ABX regimen.
Also would suggest lessening your toxic load by eliminating ALL processed foods from your diet. Lots of pure water is important. These are just the suggestions of a layman. Remember that borrelia love simple sugars for their food...don't feed them cake and candy or any form of sugar. I hope some of this can be helpful to you. I DO remember such pain...still have a nagging left hip, but I can live with it, and get on with my life. If you aren't already taking the fish oil capsules, start slowly but be persistent and build up gradually. Take them frozen and at the beginning of a meal so they are on the bottom. If one brand continually "repeats" on you, try another brand. My doc said it was most important in pain management.
Good luck! Keep us informed of how much of this you can do, and if it helps. You've gotta get out of that pain! I do not know who could say only 2 to 3% of Lyme patients require pain meds, because I do not personally know ANY Lyme patients who have not had to resort to pain meds. I've been there, done that, and finally am off all of them except the dietetic restrictions. And it is well worth it to be able to go to yoga class and enjoy it, and kayak with my kids and grandkids. You can get there too....so go for it!
HLB
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Harriet Bishop
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dustyjoe
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Posted: Fri Feb 1st, 2008 02:18 am |
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Hi there! Looks like it's been a while since you wrote on this website, so I don't know how you are doing, but I thought I'd share something with you anyway. If the antibiotics are not working for you and not taking your pain away, you may have a yeast overgrowth, like my sister does. Most of my family, including me, are being treated for Lyme and my sister didn't find the relief that the rest of us did. Turns out that she has severe Candida - three different strains of it - which has caused her to have a "leaky gut". You can "google" that - "leaky gut" - and read more about it. In layman's terms, it means that the antibiotics weren't doing her any good, because her gut wasn't absorbing them, so they weren't doing anything for the Lyme, and subsequently, she didn't have any relief from the joint pain.
She was fortunate enough to have learned about a testing method called "electromagnetic something-or-other" (I can find out the real name if anyone is interested), which operates on the assumption that all bacteria operate at certain frequencies. The key, then, is to send electric through the body looking for certain frequencies, and that's how they found the different forms of Candida (as well as Lyme, babesia, bartonella and other things my sister had).
The key, then, was to "starve" the yeast by following a very structured diet. If anyone has a suspicion that they have a yeast problem, then "Breaking the Vicious Cycle" is a must read. Other resources, such as "Lucy's Kitchen" keep the tummy happy by giving you great food to fix. By the way, "leaky gut" also causes lots of food allergies, which cause you to not get better, either. You can think you are eating healthy, when you may be causing more problems. From talking to other "Lymies" in our area, it seems as though this condition is often a problem, probably due to the fact that we have all been treated with lots of antibiotics by doctors who were treating us for unknown illnesses, when we all had Lyme to begin with.
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