I've been through 2 yrs of antibiotics. 1 yr orals and 1 yr IV. I'm feeling worse.
All my joints are painful esp mornings or anytime I sit and try to get up. My fatigue is worse now, my breathing is affected.
I have 2 inhalers for shortness of breath. My LLMD is Dr C. I've had the long list of antibiotics Doxy, ceftin, quinine, flagyl, rifampin, zith, rocephin, can't remember all of them. Can't believe what the cost for the IV meds were. Did the heparin, nystatin, pro-biotics tons of supplements, spent lots of $, I followed all the rules and still feel awful.
I've tried to educate myself on the Bionic 880 and what is involved with a trip to Germany. Can someone PM me info in laymans terms.
I'm too sick to weed thru all the posts and don't understand what a nosode is. Do you buy the bionic 880 and bring it back? How many treatments? How long are you over there and what does it cost? My husband has this crap also and he's not able to make much progress with the antibiotics because he herxes so bad he wouldn't be able to work. I'm disabled and spend all my time indoors. I can't do this much longer. I'm at the end of the rope. Liz
Posted by Jin (Member # 11735) on :
Dear Liz, I understand where you are coming from. It is just one pill after another, and no one knows what it is like to be so miserable all of the time. The Bionic 880 is something a friend of mine knows much more about. PM sixgoofykids about that. She went to Germany, and has since been doing much better.
I suspect you may have difficulty detoxing. Have you had your Phase II pathways tested? If you have those blocked up, that could be causing your lack of progress. Being too full of toxins can really hinder your ability to heal. Some other things to consider are Candida overgrowth, and whether you have mold in your home.
Feel free to PM me if you want to talk on the phone. I get frustrated and depressed as well. Being ill is difficult, and only others who have Lyme understand. Sometimes it is nice just for someone to hear your frustration, anger, and pain. People rarely have empathy for something unless they experience it themselves.
Sincerely, Jin
Posted by Snailhead (Member # 18091) on :
Hi Zil,
I cannot answer the questions on Bionic, but wanted to share this with you:
My dr. (from the beginning) told me to "go organic". I didn't want to. Oh, I ate well, but didn't want to make the full on effort. I finally got so sick inside and weak, I said "ok, ok, I'll do it. Take me to the nearest Whole Foods".
It isn't hard. It costs more, but it isn't hard. After about three weeks I noticed a substantial improvement.
You must find all foods with no "GMO". (Genetically Modified Organisms) Again, it isn't hard, especially if you are in an organic food store. You can have corn chips, ice cream, etc. You just have to read each and every label and make sure there are no chemicals or GMO's in the food.
My worst thing I had to give up was diet soda, (I know, I know) but I even found zero calorie, all natural soda, made with Stevia.
This really made a difference for me. Hope it helps you.
Posted by Sammi (Member # 110) on :
Hi Liz, I am sorry you are feeling so bad.
Sometimes when progress is not made it is due to having a co-infection. Babesiosis can cause shortness of breath.
Do you ever have heart palpitations, night sweats or other sweating, and severe headaches? If so, maybe you need further Babesiosis treatment. How long did you treat it? Often, it can be
Does your doctor know how you are feeling? He/she needs to.
Posted by seekhelp (Member # 15067) on :
Doc may use too low doses, not enough combo Abx therapy, inqdequate coinfection treatment, not hitting Lyme/cos at once time, and more. I suspect this is the issue based on a guess. Posted by keltyl (Member # 14050) on :
Zil, so sorry for you but I have no improvement yet either and now I'm losing hope. I know how you feel. Sometimes I just want to quit the fight.
Posted by Vermont_Lymie (Member # 9780) on :
Dear liz,
I am so sorry to hear that. I hope that my experience will help you keep the faith and hang in there -- I was feeling pretty awful at the two year mark also, and it was scary and depressing.
I actually had my best improvement after two years of treatment; now I am at three years and pretty good, functional. Not all there, but much better than at two years.
It all depends how sick you were, whether you treated co-infections, and I guess everything else. I have never done IV but done multiple high dose abx for treatment continuously for these years.
Have you tried the buhner herbs (adrographis, resveratrol, stephania, etc) along with abx? Along with great attention to nutrition and exercise, I think these helped me.
The disability is awful, I know. I always say lyme treatment is a leap of faith because it can take so incredibly long if you have had it for a long time. Please see if you can hang in there with treatment a bit longer perhaps, because for me it was only after two years that I had the best recovery. Best wishes.
Posted by sixgoofykids (Member # 11141) on :
I'm sorry it's not progressing for you.
Three weeks in Germany. Dr. W writes a script for the nosodes which are purchased at the local pharmacy. Best to buy the machine to continue treatment at home.
Aside from the Bionic, all I use now is parasite treatment and detox. Also, good diet, exercise.
Best to have amalgam fillngs removed prior to going.
The whole trip to Germany, buying the Bionic .... including air fare, accommodations for three weeks, rental car, herbs, nosodes, etc. is less than $15,000. Again, that is including buying the machine, and that is a rough estimate, on the high side, as I never added it up.
I have not had to have an LLMD appt. or meds since my return.
Posted by glm1111 (Member # 16556) on :
Treating for parasites and worms using antiparasitics was the only thing that helped me move forward. I was on 4 yrs of oral antibiotics including 6 mos of IV Rocephin, Check out
Another option is a rife machine. Another member, after a long time on abx, tried rife. Soon after the first session he had a monster herx like he never had on any abx.
Posted by groovy2 (Member # 6304) on :
Hi Zil
From the symptoms you list it sounds like you have Babs -- Also--
The only med you list that you have taken that will do anything for babs is the Quinine-
Mepron --Bactrim DS- Quinine -- Alaina - are some of the meds to treat Babs--
I am going to post about my babs treatment a little later so look for it--Jay--
Posted by zil (Member # 12048) on :
Thanks everyone. I do have heart issues and take atenolol. I have adrenal insufficiency, growth hormone insufficiency,hemochromotosis, and sleep apnea so it's hard to figure what disease is causing what symptom. The joint, breathing, and exhaustion are Lyme. It's real hard to get out of bed in the mornings or I should say noon.
I guess I'll start doing all the cleanses. Liver and kidney, parasite. I'll read more on the bionic 880 and that may be the route I go. I've been sick and disabled for 10 yrs. That's a big chunk out of my life and that sounds like a pretty fast fix. I am really disappointed in the AMA. People shouldn't have to live like this.
Posted by AliG (Member # 9734) on :
When were you diagnosed with hemochromatosis & what are you doing for it?
The symptoms you are complaining of could be from the hemochromatosis, except I don't see breathing difficulty or lung issues.
Breathing difficulty could indicate further heart issues or I guess the "organ or tissue damage".
Have you had a cardiac evaluation lately? Is Dr.C addressing the hemochromatosis or are you seeing another physician for management of that?
Symptoms of hemochromatosis often don't appear until a person is 40 to 60 years old. This is because iron buildup usually develops slowly throughout a person's life.
Symptoms include:1
* Fatigue. * Joint pain, usually in the hands, hips, knees, and/or ankles. * Weakness. * Weight loss. * Abdominal pain. * Change in skin color. * Decreased sexual drive, including impotence. * Increased urination.
Without treatment, hemochromatosis will continue storing iron in the body. When iron levels are dangerously high, organ and tissue damage can result. You could develop other conditions, such as diabetes and arthritis.
Complications of advanced hemochromatosis
Liver damage is common in later stages of hemochromatosis. Types of liver damage may include:
* Liver inflammation (hepatitis). * Cirrhosis with yellowing of the skin (jaundice). * Liver cancer. * Liver failure.
Serious heart problems may result from hemochromatosis, including:
* Irregular heartbeat (arrhythmias). * Cardiomyopathy, a disease that affects the heart muscle. * Heart failure.
Hypogonadism, which affects the sexual organs of men and women, is another possible complication of hemochromatosis. Symptoms may include:
* Loss of body hair (men). * Breast enlargement (men). * Shrinkage (atrophy) of the testicles (men). * Decreased sexual drive (men and women). * Erection problems (men).
Advanced hemochromatosis may also cause:
* Diabetes. * Painful joints. * Darkened skin color (bronze to metallic gray). * An enlarged spleen. * Redness of the palms.
Going without treatment for hemochromatosis can shorten your life. The major causes of hemochromatosis-related deaths are:2
* Liver failure (cirrhosis). * Liver cancer (hepatocellular carcinoma, or HCC). * Diabetes. * Cardiomyopathy.
WebMD Medical Reference from Healthwise Last Updated: April 30, 2007
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.
Posted by AliG (Member # 9734) on :
PS- I'd DEFINITELY consult your physicians before doing any cleanses or anything else with KNOWN hemochromatosis & KNOWN heart issues.
Posted by Jin (Member # 11735) on :
Dear zil, I agree with AliG. You really should not do any cleanses if your system is detox impaired. This will make you worse. A friend of mine did that and ended up redistributing toxins into her organs. You do not want to do that. Phase II Detox Pathways tend to be responsible for such issues.
Sincerely, Jin
Posted by zil (Member # 12048) on :
How do I fix my ability to detox? What do I need to do about my phase II pathway?
As far as the hemochromotosis goes I was dx'd with it in 2003. I'm deironed and have a PCP that follows it. I get labs for all the iron stuff ever 6 mos and have a phlebotomy if I need it. I had a cardiac stress test about a month ago as the shortness of breath was worsening. My Dr. ordered the adenosine stress test as I've been disabled since 1999. No way I could have been on a treadmill. It was normal.
Posted by karenl (Member # 17753) on :
Zil, I am also treating since two years without any hope. I feel the same way. Do you have lupus? I cannot travel, how can you do the trip to Germany? It is very exhausting.
Posted by Jin (Member # 11735) on :
Dear zil, I believe my friend had her testing done through Genova. Their lab seems to be fairly thorough. If you have the HLA-DR4 Gene, that will show a genetic predisposition toward holding in toxins. My friend had LED laser treatments to unblock her pathway. Identifying the cause of the situation is essential, then treating the condition.
Sincerely, Jin
Posted by WildCondor (Member # 434) on :
If it is the Dr. C I am thinking of you probably haven't gotten anywhere because your doses were too low. You probably took the right meds, but too low of doses, and/or not the right combination for long enough. Post your doses of all meds please.
Posted by seekhelp (Member # 15067) on :
Even Quest and LabCorp can check for some of these genetic detox issues, but most LLMDs including mine won't do it becxause they say there is no cure so why bother wasting the testing dollars? My old LLMD said this too.
Posted by zil (Member # 12048) on :
Sorry can't post the meds and doses right now. I'm just not up to going thru all my records for that info.
Thanks to all of you for your advice.
Does anyone know if the LED therapy and Bionic 880 are similar treatments?
Posted by randibear (Member # 11290) on :
have you tried the buhner herbs and adding biaxin or something?
it has really helped me. i do have to take diflucan periodically as i've got bad yeast.
Posted by massman (Member # 18116) on :
I PMed you with reference to a great naturopathic doc in Texas.
I feel cleansing is like beating a tired horse. Organs are already strained and tired and lets strain and tire them some more ? Makes no sense to me.
IMO getting detox organs healthier before detox is done is a big key to regaining health. See the site I forwarded to you.
Posted by Forgiveness (Member # 20417) on :
If anyone needs nosodes, Dr Marc said to put his name and number here, he has no fear of the FDA since he is in Mexico. He can get the kit and the live Borrelia nosode as well. His number is 011 52 664 686 2981 this is how you dial from the states. His email is dralbarran@biomedix group.com you will deal directly with him. His Cell is 011 52 1 664 307 6049
Posted by unsure445 (Member # 15962) on :
Sixgoofykids,
If you don't mind my asking, did your LLMD recommend the treatment in Germany or did you decide to go that route on your own?
Do LLMD's recommend things like salt/c, rife, etc.?
Mine never has but I wonder if this is what I am headed for...
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