05-27-2013, 05:30 PM
Join Date: Jun 2012
Location: Chicago, Illinois, usa
Desperately need your help
Hello everyone- I hope to start antibiotic treatment in a few weeks and I am a little scared (actually, a lot!). I have been reading on anything that I can find on Lyme Disease I am looking for guidance in what I am about to get into from anyone that has it.
Iíve read that you start with two six weeks of antibiotic treatments. How bad does it get? Does your body react in a bad way to the antibiotics? I heard of Herxing and how people end up in the hospital with an iv. Why do you go to the hospital?, do you faint, canít function, do your organs fail? What gets so bad that you have to go to the hospital? When they give you an iv- what is in the ivÖantibiotics? How long are you in the hospital? Do you need to take time off of work to do this? Have any of you taken herbs along with antibiotics? Do you have to go to the hospital every time you herx?
I read on salt and vitamin C. Does it help to do this before the antibiotics? How bad does it affect the blood pressure? Does the body react adversely to the toxicity of the salt? What about cranberry juice? Does it help to take it when you are under treatment? Fish oil? Any luck with that? Is it true that you have to take antibiotics for life?, is this a once a year treatment or every six months? Do the symptoms ever go away and do you get normal again?
How long does it take after you start to take the antibiotics before you begin to feel better? Do you feel worse before you feel better? Have any of you done the antibiotics and that was it, you were cured?
It has been almost a year that my nightmare started. Like many of you, I have been to every known doctor and they had no clue of what was wrong.
My first PCP doctor said I had Fibromyalgia and gave me antidepressants. I didnít take them because I knew he was wrong.
My second PCP read my list of symptoms and said that I just needed to exercise more.
The Cardiologist found an abnormal heartbeat and arrhythmia after I wore a heart monitor for a month. He wanted to put me on beta blockers. Which I did not take because of a dreadful experience with Beta Blockers a year ago.
The GI doctor found Gastritis and some sort of stomach infection after an endoscopy so I was put on antibiotics for a week. They could not tell what the infection was because I take PPIs for the gastritis and they say this affected my results. I am sure that it wasnít H. Pylori that I tested positive but rather the Lyme Disease.
My third and current PCP (after I fired the last two) tested me for Lyme Disease on the ELISA test but because only two bands were positive instead of three I was not prescribed anything. According to him, the CDC needs for me to be positive on three bands before they can say I am positive and get treated.
My Endo doctor tested me for antibodies, testosterone, and vitamin D. My Testosterone is under 100 (very low), my vitamin D is almost non-existent and my blood work came back positive for Hashimoto but my Endo won't give me anythign for the hashimoto because my TSH is within range.
When you add all of these positive results and my symptoms, it adds up to Lyme Disease. I am seeing an Infectious Disease doctor in a few weeks and thatís where I hope to get antibiotics for this. Iíve read that I canít take Testosterone or anything for my Hashimoto because it will weaken my auto-immune system- is this true? Will the Testosterone and Hashimoto go away after I get treated for Lyme Disease? Will Armour for Hashimoto weaken my immune system?
As for the symptoms, I am male and about the only thing that I donít suffer from is menstrual cramps and heavy periods. Everything else is affected, infected or whatever you want to call it. As I write this I am feeling miserable because of the low testosterone and the lack of hormones in my body. It feels like my body is one step from going into shock. I am afraid that taking the antibiotics is going to put me over the edge and possibly be fatal.
I apologize for the long message but I really need your help in telling me your experience so I know what is waiting for me ahead. God bless.
05-28-2013, 06:31 AM
Join Date: Mar 2006
Re: Desperately need your help
Hi Seeekingpeace...I have a feeling I will miss some of your questions. But I will give this a whirl
There are a couple threads above that you might want to look over. They may help answer some of your questions. There is one there "How to Share L.L.D. names" (Lyme Literate Doctor). This is whom you should search out and go see. Infectious Disease doctors, is not the answer, and many will tell you the same.
You need someone that deals in Lyme Disease and co-infections that go along with it. Such as Babesia, Bartonella, Erichliosis, and viruses. You need to be checked for heavy metals and treated for parasites.
Your question about going to the hospital. Many insurance companies now days, (ones that will pay for treatment). Insist people go to a doctor/hospital to have IV antibiotics infused. Back when I had a picc line, I was able to do it at home and if I needed IV fluid I had in home health nurse for that. That is what you might be reading. But I do believe things have changed so people have to go to the infusion center for their meds.
I went to the hospital a few times for pain shots and beings I didn't know how to take care of my self. I would get dehydrated so would go to the hospital for that.
Not everyone goes to the hospital. So take a deep breath.
Treatment for Lyme and co-infections can be a long haul. It all depends on person to person. It all depends on our own individual bodies. I have heard of only a handful that have been able to put this into remission. I have only heard of a few that have NO symptoms after long bouts of treatment. It can be done. But for myself, it has not happened. I have been on the proper treatment for 13 years. And am still having problems. BUT don't let that discourage you. You might be one of the ones that can get it into remission quickly.
The Salt/C protocol is like any other option out there for treatment. Beings our bodies are all different, and have different strains of the bacteria. And different co-infections and different strains of each of those. We all respond differently to treatments. I tried the Salt/C for a year. I saw no difference except at the beginning I felt a little more energy. I now just take Adrenal supplements for the same energy lift. Doing this protocol like any other. Make sure you are having blood work done. (chem panel). And make sure you are taking the right type of salt. This protocol is NOT table salt. So make sure like anything you try, to do your own research.
Also seeing a LLMD (Lyme Literate Medical Doctor) They will go on your symptoms and not solely on a test. The Elisa is the WORSE one you can have done. There are specific Labs that have the best testing there is for these bacterias. But even then, they don't test for all 300 strains of Borrelia(Lyme), and they don't test for all the different strains of Babesia and Bartonella, ect. So another reason to pay the money and see a doctor that is knowlegable in the Lyme world. After going to a few docs you see what you are up against. And this is YOUR life and YOUR health.
It doesn't hurt to do supplements with treatment. In fact it is best to find things to boost your immune system. That is one of the main goals. Is to boost your immune system. It will help to put things into remission. And with these buggers in us it depletes us of some vitamins. So seeing a LLMD they will help guide you.
There are also Naturopaths that treat lyme. I have talked to some that have had good luck going to them. Then you will also have help with your hormones. But then, I think any good LLMD will help you with that too. But always ask before going if they treat lyme.
This is not a easy road, as you are finding out. There is a documentary that you can watch. It "might" help shed some light on this disease. "Under Our Skin".
Short courses of antibiotics is not going to help. Just like when you have pneumonia, the docs put you on 10 days of antibitotic. All that does is puts that bacteria into remission. Only to come out sooner or later as alshiemers, fibro, chronic fatigue, ADD ect ect. Any bacteria can cause distruction in our bodies/brain. So short term treatment is NOT the answer. LLMD's say to treat after 3-4 months of no symptoms.
I hope this helps some.
05-28-2013, 06:58 AM
Join Date: Jun 2012
Location: Chicago, Illinois, usa
Re: Desperately need your help
Thank you JoJo for taking the time to write such a detailed response. I am sorry to hear that you have been going through this for 13 years. I have been suffering for one year and it has been the worst year of my life. I can't imagine what it must be like to suffer from this as long as you have.
I used to respect and have so much admiration for doctors. But now that I have dealt with them I am so dissapointed at their lack of knowledge, lack of interest, and hesitation to do anything for fear of being sued (I think).
I hope that I can put my symptoms behind because it is affecting my personal life, my job, and I don't enjoy life like I used to. I guess I am sick of being sick. Thank again.
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