posted
I am lost about what to do next other than write my will.
I am completely dependent on my mother. There is a long history of conflict with us. She was a very young mother, and she never grew up. She has her own serious problems with depression, or, I think, bipolar disorder. While I do feel sorry for her, her decisions are costing me my health or possibly my life. After years of isolation from illness, I don't have any friends to help. My grandma took care of me until last November when she died of ovarian cancer. Now it's just Mom.
I'm 38; probably had Lyme since I was a child. I was dx'd in 2003 based on symptoms (including brain lesions) and a positive IgM Western Blot. Recv'd brief treatment (oral Zith and flagyl for two months) before my Gma was dx'd with cancer in late 2003. I haven't been treated since then.
I recently agreed to go to my cousin's rheumy because that was my only option. My mom kept sayiing that we'd "go somewhere" to get treatment. It never happened. I've been having some scary heart stuff for the last month. I have a constant feeling of mild pressure on my chest and an occasional heavy pressure. During that heavy pressure feeling, my heart skips a beat. (I can feel it in the pulse at my neck.) I'm also waking up at night gasping for breath. I was hoping this doc could at least address that.
Well, you can guess what happened. She looked at my test and said I couldn't have Lyme if I didn't fit the CDC criteria. I told her the CDC criteria was for tracking, not diagnosing. She didn't believe me, so I'm going to fax her that info from the CDC website Monday. Like that will do any good. Anyway, she says I have fibro. The chest pain is from fibro. She didn't address the other symptoms especially after I argued with her about Lyme.
Her office called today. My Lyme test was "normal," so her nurse relayed the message to treat the fibro and I would be better. Other than "mildly elevated liver enzymes," everything else was also normal. She called in some kind of paste for these horrible sores in the corner of my mouth and Lyrica. I asked her about my heart symptoms, and she said that the duck didn't tell her anything about that.
So now my mom wants to wait until my appt in three weeks. This gives her a geat excuse to do nothing. I don't believe this duck will check my heart then. I'm worried that my heart will stop or that I won't wake up to breathe. I can go to my local doc (good doc, but doesn't know Lyme). He will probably send me to a cardio doc who will think I don't have Lyme either and probably won't even check.
I can try faxing info to this doc to get her mind to open although I don't know if there is enough info in the world to do that. I can hope my local doc freaks out about my heart enough to scare my Mom.
I honestly don't know what to do. I'm open for all sugestions. Can anyone please help me? I've been trying to find online will forms tonight. Maybe it's time to just give up.
Kitty kisses. 3ktykatz
-------------------- 3ktykatz + 1 new kitten Posts: 24 | From Alabama | Registered: Jul 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi 3ktykatz, I feel your frustration.:-( Don't give up!! You can do this.
First and foremost, insist on a sleep study. This is the second time in a few days that sleep apnea has come up on the list. I don't think it's that unusual with lyme patients. Waking up choking was one of the few symptoms that I had of sleep apnea. Other symptoms that can indicate sleep apnea are fatigue, irritability, road rage, falling asleep at the wheel, snoring and I'm sure I'm forgetting a few. Conditions associated with sleep apnea are diabetes, fluid retention, weight gain, inability to lose weight, high blood pressure, heart complications and others. Sleep apnea can be life threatening if not treated and your chance of having a stroke is 400 X's higher if you have untreated sleep apnea according to my sleep doctor.
As far as your current doctor, the CDC website favors the IDSA (Infectious Disease Society of America) ducks point of view and has many links on their website that reinforce that point of view, including diagnostic information. Rather than giving your doctor that information, consider sending her to the ILADS website. www.ilads.org/
They are a group of LLMD's and other professionals who treat lyme disease. There are papers on their website and even their phamplet that gives facts about lyme that will be helpful in hopefully opening her eyes.
To be honest with you, I think it can be difficult to find a doctor who is open enough to consider the ILAD's point of view. Peer pressure in medical circles is very powerful. If there is anyway possible that you can get to an LLMD, that's what you should do. You can find one by posting to the seeking doctors section of this website. If you can't get to an LLMD, you will need to very carefully put together information and shop around until you find a doctor who is willing to treat you.
I'm sorry you are facing such difficulty but hang in there. You can get to the other side. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I agree with Terry that it is a waste of time to try to convince a doctor. What doctor would not resent a lay person trying to teach the doctor about medicine?
It also seems to be a waste of time trying to get your mother to get you well. You're on your own in your health care. It is up to you and you alone. TAKE CHARGE!!
Find an LLMD. Research lyme and also research other causes of your symptoms. Identify possible causes and then work with the doctor to determine whether or not you have that particular cause. If you have it, treat it. If not, mark it off your list and move on to the next possible cause. Don't waste time trying to get others to do this for you.
Use this board for help and support. People who aren't sick can only tolerate so much talk about being sick.
My family has been very supportive throughout my illness, but I believe they have been so because I did not lean on them too hard and I fought to get well.
There was several months in my illness where I was so disfunctional my husband had to do everything around the house, at the barn and for me. He even had to zip my pants after going to the bathroom because my hands were too disfunctional. If he had to be out of town, my mother had to stay with me because I could get trapped behind doors I could not open, I could not open medicine bottles, canned goods, bottle caps, turn on or off water faucets for a bath. Could not get into the tub for a soak without my husband lowering and lifting me. So, believe me, I was very sick. But I never whined and I tried hard always to do for myself. They knew when I asked them for help, I had already tried to do it on my own.
It has only been recent that I could open a new drink bottle. My mother was so pleased, she actually was telling it to other people. They just stare at her like they can't imagine why opening a drink bottle would be such a difficult accomplishment.
I was so consumed with my illness and trying to get well that it was all I thought about. When I talked too much about it, I would see people's patience straining and then I would strain to come up with other conversation. They would look so relieved. Be considerate.
Don't burden your Mom. It sounds like she has issues of her own. Lay out your own game plan and then ask her for specific help. Example:
Mom, I've found a lyme literate doctor who I believe can help me determine whether or not Lyme is what is wrong with me. (remember, she doesn't think the rheumie is a duck) Could you please drive me to the LLMD? It would really help me to have some company and support.
Now, you have taken the responsibility of getting you well off her shoulders and you have complimented her by saying she would be company and support to you. You have also asked for her help in a specific way. Driving you to the doctor is something (I assume) she can do.
If you take more of the responsibility of your illness and be appreciative of any help others give you, you will find they are willing to give you even more help than you ask for. It can be frightening to them to see you so sick and feel the responsibility for healing you rests with them.
Good Luck to you. You can get 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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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thank you luvs2ride for your great reminder about taking responsibility for our illness and not being too burdensome on our family. I struggle with this constantly and needed to hear your words.
3ktykatz, you said you have a clinical diagnosis based on a positive IgM WB and brain lesions. Is there anyway that you can get some help from the doctor who has already diagnosed you with lyme? Why did they stop at 2 months of treatment? Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I know how that works, IF they ignore it, dont address it, it will go away. NOT!!!
You MUST find a LLMD!! Forget the ducks previously seen. Forget the fibro, junk diagnosis. Do you have any income of your own to support treatment? Pay meds? Pay LLMD fees? Will other family members/ friends help you?
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
{{{{{Kty}}}}}
I am so sorry for your plight. I'm sure those who responded for you to 'take charge' don't realize that you can't see or walk well enough to drive yourself to probably another state for help.
What you do have going in your favor is a good head on your shoulders and the ability to write extremely well. It may be that you'll be able to appeal to others via cyberspace to help you.
I wonder if some lyme club members in SC, GA, or FL could help you.
Keep writing, Kty, and I know you'll eventually reach someone who can help. I'll talk to some people in my area to see what we can offer.
Big kty hugs, Sue
[ 27. August 2006, 01:17 PM: Message edited by: Sue vG ]
Posts: 1307 | From TX | Registered: Sep 2002
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posted
Oh, 3ktykatz --- my heart and prayers go out to you!!!!!!!!! I wish I could do something to help take your pain (emotional and physical) away!!!!
You've gotten some good advice above -- some of which you may be far too sick to heed, or in too dire financial trouble, etc.
First off, unless I missed this in your post -- have ANY of these ducks done an EKG/ other tests on your heart??? Tests of lung function???Lyme literate doc or not, I suspect that would be a good start. Cardiac symptoms can indeed be life threatening -- and that needs to be addressed medically asap, regardless of the underlying cause. (Obviously, Lyme can and does cause cardiac problems.)
As scary as it is, the irregular heart beat may or may not be terribly serious -- I have had heart-beat irregularities (skips, palpitations) for years, and have been assured twice now by cardiologists that all my other heart functions are normal, and that they don't believe the heart irregularities are anything to worry about. of course, these folks don't believe in lyme, so I take their advice with a huge grain of salt --- my heart has normalized almost completely with good lyme tx.
I believe you *are* likely going to need to find an LLMD if you are going to get well, in the long run. Have you posted on the 'seeking a doctor' section? Someone may be able to find a local doctor for you, or at least an LLMD who would be willing to consult with someone local to you.
If you are completely unable to receive treatment from an llmd, would you be willing to research the herbal/alternative therapies??? I'm not advocating one way or the other here, except to point out that there are indeed many folks who have gotten much, much better using alternative methods.
Please, please don't give up!!!!! It sounds like you, too, may be suffering from depression (and geez, who wouldn't be in your situation??? Plus, lyme can cause depression, as we all know) --- would you consider trying to find a therapist/counselor or someone else (a minister, etc. if you are so inclined) who can provide real-world support? There are often low-fee clinics, some of whom will even do home visits if you are unable to travel.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
3ktykatz,
Please listen to me. This is very important.
It may feel good to have others sympathize about your illness but it won't get you well. Even wonderful, dedicated lyme literate doctors as so overworked, they can only devote minimal time to you.
You, however, have 24/7 to think about and experience your illness. You know your symptoms the best. Use your computer time to learn. Learn from others here. Learn about every possible cause to your symptoms and find what works to resolve each symptom. Some of the information you gather will be the results of medical research and clinical trials. Some will be a more natural approach and can be utilized in combination with other treatments.
Don't succumb to this disease and don't be a victim of it. Whether the rest of your life is 5 weeks or 5 decades, you are the only one living it.
Your grandmother with her loving, well-intentioned care, may have been an enabler of your sickness. Your mother sounds ready to bolt.
Re-read my previous post. No matter how bad your illness, you can find others here who have been through the same and worse. What did they do? Please don't listen to anyone who is wallowing in their illness and is more than happy to keep you wallowing in your illness. Seek out the wisdom of those who are getting and have gotten well. They are doing something right!
Luvs
-------------------- 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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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
You have gotten great advice, so I will only add that it definitely sounds like you have apnea. It can cause many of the symptoms we attribute to Lyme, and without proper sleep, IMO, no treatment plan can make you well. With no deep sleep, the body does not repair the damage done to it, and Lyme does plenty of damage.
I have apnea, and my sleep specialist says it can cause Metabolic Syndrome, diabetes, intractable center body obesity, high blood pressure, high cholesterol, fatigue, snoring, irritability, depression, and abnormal heart rhythms, just to name a few.
If you have insurance, most insurance will allow you to call and make an appt. on your own to see a sleep specialist. Check to make sure you don't need a referral. You will need a sleep test to confirm the apnea.
Also, sores and cracks at the corners of the mouth are usually caused by a deficiency of vitamin B2, or yeast overgrowth, or both. If B2,which is found in abundance in many foods, is deficient, then all of B Complex is deficient and you need a supplement. A good B Complex supplement can help keep you calm as you are dealing with this as well as helping your brain function.
Yeast overgrowth can cause the same symptoms as Lyme and needs to be dealt with. There is much material on this site about how to deal with yeast, which is a problem for most of us.
Best wishes, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey 3, this sounds like babesia to me. Babs often causes heart palps, etc. as can lyme. Go to the "Seeking a doctor" section of this forum and post a request, Someone will private message you the contact info.
Secondly, in the interim you could order Stephen Buhner's book [Healing Lyme] at amazon.com. Mnay here are getting better using his herbal protocol. Many supps/herbs will be beneficial until you get an adequate doctor.
Cat's claw, samento, oil of oregano, freeze-dried garlic and artemisinin for babesia will all be helpful. You'll need to be pro-active to get well.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I think that some of the advice is a bit harsh. There were points where I could do nothing ... And without people helping me. The pain was so intense My body was close to paralyzed -
couldn't hardly hold a fork to eat would keep dropping it. Couldn't open any bottles or pills like another poster Had to hold on to the walls to get from the couch to the bathroom and that was the only time I left the couch.-
but I was also to sick to research find a dr to help me - obviously I couldn't get myself there. I was also sleeping at least 20 hrs a day and falling asleep in the middle of my own sentences.
It didn't matter how much I wanted to help myself - I just wasnt capable of it.
And I hardly think that the people that kept me from slipping further down the lyme abyss being paralyzed by pain and maybe even from dying were not enabling my illness. They were saving me from being forever consumed by it.
I am sorry you lost your grandmom - When you are so sick and you only have one person in the world to count on it must make losing them that much more difficult.
Having said that. First I had heart palpatations at one point and my doc did an ekg and an echocardigram (sp?) -
While it would be best to have a dr that is lyme literate check this stuff out, You might not need someone lyme literate to make sure your heart is functioning fine.
Just FYI mine was fine despite the palpatations and they disappeared with treatment.
When it comes to treating lyme and coinfections a llmd is your best bet....
If your mom won't take you to a llmd is there anyway you could get a bus or train to the area?
(I know I really can't go for a long even moderate trip on a bus by myself - My fatigue is way to bad- so I understand if you cant)
My other suggestion would be to find a support group. Of course it would be best if you could attend meetings. But if you can't try to speak to the leader.
Ask the leader if they know or could ask others if they know a local dr. who is lyme friendly - open minded and willing to treat.
If you can't attend meetings I would ask if members can communicate through any other forum....
Do they have a website, message board, exchange email etc?
This would give you "real life" people to look to for support.
Sorry this is so long and rambly. I hope this is coherent- my fatigue is fairly wicked right now.
posted
Keep moving forward. Listen to all the good advice here.
Remember, never, never, give up it's not an option.
I wish you lived closer to me. I will keep you in my prayers.
Posts: 175 | From Pa | Registered: Aug 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Oh Azure, go back and read my posts. I had all the symptoms you have had and I did have help from my mother and my husband. I even recommend to 3ktykats to ask her mother to drive her to the LLMD.
What I heard in 3k's original post was her total dependence on others to take care of her with no hint of how she is active in taking care of herself. This is not healthy and will not get you well.
I am grateful for the help I received when it was needed. I couldn't have functioned without their help. But they never felt put upon by me because they witnessed first hand my relentless search for answers to my illness and my efforts to take care of myself whenever possible (next to impossible when I was my sickest). Hard as it was to talk about anything but my illness, I made a great effort for their sake.
BTW, I am completely asymptomatic and have been for nearly a month now. Too soon to claim victory, but I am happy to be where I am and I promise you, I would not be at this point if I had just depended on the doctors (good doctors). My family would not have had a clue.
This website was the most informative. Here I would hear what worked for others, thoughts and opinions of others and it would send me onto Google to search and read, read, read. I have a library now of books on lyme, rheumatoid arthritis (yes, my lyme went that far), Celiac disease, adrenal fatigue, leaky gut syndrome and diet.
Some things that worked for others helped me too and some things were a total disaster for me. But there was no way to know unless I tried and no way to know I needed to try unless I read and researched.
For me, the turning point was diet and healing a leaky gut. But I didn't get this from a doctor. I got it from my research. I tried a vegan diet and saw tremendous results. Then I went in search of a doctor who specialized in nutrition. Under his care, I am healing. My life is back to normal. I am doing everything I did before and feeling better than I have in years.
3K, take charge of your health and never give up!
Luvs
-------------------- 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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Except for financially (thanks to my Gma), I was on my own from 1990 until late 2002. I went to every doctor's appt, had every test, filled every RX, fed myseld, etc, on my own. I would try as hard as I could to work, go to school or both. Eventually, I would have to cut back or quit. I would take a few months "off" to rest and try to eat well before "giving it another shot." Every time I thought I was better enough to get through. Same story over and over. I tried so hard to make it on my own.
I quit work in 2000 with the intent to use the last six months of my ex-husband's good insurance to find out what was wrong. I was planning to move in with my Gma, but her home burned down two weeks after I quit. I went to every appt alone. I had every test alone. I had to beg to have someone drive me to have a spinal tap. After being told I had MS, I was finally dx'd with permanent spinal cord damage due to B12 deficiency. When I couldn't drive anymore, my Gma inisted my mom start taking me. Then I started to get worse, including developing brain lesions. When the doctors, couldn't explain it, I decided to find someone else.
After six months of my own searching, I found an LLMD in Alabama. He dx'd me ,treated me with the zith and flaygl, and I improved neurologically. He then put me on Zyvox (at $1500 a bottle) for two weeks. I herxed hard, but I did get better a week after I stopped. I know believe that it killed off some secondary germs. When I went back, he put me on another two weeks of Zyvox (another $1500 and my insurance requires you to pay up front.) I herxed from day one, but I did not improve that time. When I went back, he said that Zyvox didn't seem to work as well on neuro Lyme.
Then my Gma was dx'd with ovarian cancer. I didn't go back for six months. By then I was having ear, nose, throat and kidney infections again. He said that the Lyme was beaten back and that we should start looking at the causes of my other infections (not at Lyme co-infections, just other germs). At first I was thrilled. Then I started wondering what had beaten the Lyme back. I am firmly convinced that he wanted the Zyvox to work so he could include it in his research and to heck if it didn't.
That was 2004. I'm leaving out details, but I'm just too tired. My Gma may have enabled me financially, but she by no means enabled me in any other way. She came from a generation where you would be fine if you could push yourself hard enough. Illness was a character flaw. I still loved her deeply and always wanted her approval.
I'm in such bad shape now that I must be able to improve a little to even help myself. Because of vertigo, pain, fatigue, etc, etc, etc, I am lucky if I can bathe once a week. I eat whatever frozen crap I can nuke. I'm going to stop there because you all know how this is.
I am going to my GP next week about my heart. The "skips" or whatever have stayed constant today. I talked to a good friend who is the head EMT at a nearby company. After telling him all my symptoms, he said not to let it scare me, but I fit congestive heart failure and cardiac asthma. I need to get it checked especailly since it is getting worse.
I know I have hormonal imbalances. I think going to an endocrinologist (? SP) who uses natural hormones might allow me to feel better enough to the research I need to do. I do have an idea about finding one, but if anyone has suggestions, please let me know. I have spent countless nights crying and praying to just get better enough to help myself.
I may be new here, but I am BY NO MEANS new to research through every means possible. I have so much info about all sorts of diseases, tests, meds, etc, that I could be on a health version of Jeopardy. I have an incredible memory. It's just unfortunate that, by the time I was dx'd with Lyme, I was unable to process that info well at all.
I'll re-read these posts later. I just felt like I had to respond.
Thank you for all the helpful suggestions. Maybe I can order a book or two or hundred. I might be able to process and remember stuff I can have in a book, especially since my darned printer died. Boo hiss!
Again, thank you.
edited to add - I am so tired of having to fight so hard everywhere I turn.
Kitty kisses, 3ktykatz
-------------------- 3ktykatz + 1 new kitten Posts: 24 | From Alabama | Registered: Jul 2006
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posted
I was actually thinking that you might have congestive heart failure based on your symptoms -- though I am not a doctor, and most assuredly not a cardiologist. My mom has it (she has Lyme, too, btw) and her symptoms were fairly similiar -- the irregular heartbeat, pressure in her chest, the gasping for breath when lying down, the fatigue. One symptom that often occurs with congestive heart failure is swelling, particularly in the abdomen and the legs. I'd definitely have your heart checked out ASAP! Better safe than sorry in that department.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Mini - The one thing that clenched it for him was the ten pounds I've gained in the last six weeks or so, seemingly all in my gut. I'm not freaked out by it, but I certainly think it should be checked. Thank you!
Sue - Love you always! Maybe I just have a hairball. Or it could be my 28 pound cat. Maybe he's sneaking on top of me at night.
Azure - Thanks for the hand holding. I do really need that sometimes. I try not to talk to anyone about this, but sometimes I want to burst.
Crud, I can't remember who wrote what. Grrr. Ok, thanks to all. Please reccommend any books that I can order. Maybe I can get my mom to read some too. I think she would understand more if she could see things in print. She read lots about ovarian cancer when Gma was sick. I do have a tendency to get defensive when she asks questions, and I'm sure that helps bunches.
I discussed with her my "plan" to go to my local GP and then find an endocrinologist. She didn't exactly jump up and down, but she didn't say no either. I guess we'll see.
edit to add - No, I haven't had any tests on my heart or lungs.
Thank you all, 3ktykatz
-------------------- 3ktykatz + 1 new kitten Posts: 24 | From Alabama | Registered: Jul 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi 3K
your heart palps sure could be caused by Babs--Very Common--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Ok 3kt,
That's more like it. Now you can read your own post and decide to eliminate what you have already tried. Clearly, what you have done until now did not get you well. Head in another direction.
I like your idea about the natural hormones. Although you are kind of young for any menopausal thing. Find an intergrative doctor who will look at your entire body, identify the weak areas and begin to repair them. If you live anywhere near North Carolina, I will be happy to recommend my doctor. He is the best!
I strongly suggest you research leaky gut syndrome. Someone recently posted an article on this site about AIDS researchers discovering that the AIDS virus hangs out in the gut and that 70% OF OUR IMMUNE SYSTEM IS IN THE GUT! I don't think you have AIDS, but I bet you anything you have leaky gut.
All of you who have taken lots of abx most certainly have gut damage which can lead to chronic illness of all types.
Lyme may have started your illness but now gut issues may be what is wrong with you. That was my story and healing the gut is healing me.
Gluten intolerance (Celiac disease) is another serious illness that is far more common than people realize. Not everyone suffers the classic symptoms. Many don't even realize they have it, yet just by removing gluten from their diet, many chronic illnesses go away.
Read "Dangerous Grains". Research Leaky Gut and Systemic Yeast. Read "Healing Lyme" by Stephen Buhner. Find natural ways to reduce the bacteria load in your body like garlic. Simple, cheap and extremely effective. I chop it fresh and gulp down 2 tespoons a day with water. It is easy to chop and I chop 4 or 5 cloves at a time which last me a couple of days. Always eat right after a meal so the stomach acid can break it down and the garlic will not upset your stomach. My husband assures me I do not smell like garlic. Garlic is antifungal, antibacterial, chelating and keeps the blood thin which prevents heart attacks. (Be careful if you are already on a blood thinner)
Good luck.
-------------------- 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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