posted
I'm posting this PM for both Mike, Rachelle, Linda and others who have chronic fatigue as their major symptom. I am still learning and got Mike's permission to post our messages.
Is there anyone else who has Chronic Fatigue as their major symptom? What do you do for it?
Thanks, ~Grace~ -------------------------------------------------------------------------------- GraceT Frequent Contributor Member # 16558 posted 31 October, 2008 06:00 PM -------------------------------------------------------------------------------- Hi, Flagyl is harsh!! Zith and Flagyl are just TOO harsh to do both at the same time.
My girlfriend is a nurse. She's had Lyme since 2002. None of the drugs, nor methods she's tried in the past 6 years have helped her kick the spirochetes back very much. She's used Flagyl before - had similar experiences, bad diahrea, loss of weight and so forth.
After learning I had Lyme, I used 1 month of doxy per standard protocol. Next came 2 months of Silver pushes after the VitC IV (expensive and worthless protocol from a local LLMD). The Vit C feels great though.
Every 2 months I switch protocol per LymeNet readings. If spirochetes really can change DNA and their offspring can handle the lates methods we are throwing at them, then it's important to Switch!
DETOX - WHY doesn't the medical community help us out? They don't seem to realize that the die-off are so harsh they we are dying from the toxins that are created.
Next - - I switched to Homeopathic and bought a Rife machine. WOW! I've been able to peel back a few symptoms in Sept and Oct - just using much easier to handle methods.
This might not be of interest to you now, but please consider finding a Holistic practioner who can test you (without the drugs in your system - you should lay off for 1 - 2 weeks prior to appointment where they do the testing.
Whether the practitioner uses a Bio-Meridian machine, just talks with you first, uses muscle testing or whatever. I can tell you that I thought Homeopathic was hokee stuff.
Decided to give it a go - all I can say is WOW.
I can now exercise and I've been laid up for one year and one month with this disease.
My Co-infections are diff. than yours, but I feel better, so will get tested for them again near the end of the year.
Out of pocket expenses - yes they are. However, I have located a Medical Coder to whom I fax my Naturopathic/Homeopathic invoices to and she codes them - turns them into BCBS. Some money back is better than none; plus my regular MD would only follow the ILADS which is truly worthless.
I thought I was going to die in Feb/Mar of this year. Very scary.
If you wish to talk in person. Call me at 480-361-1345.
I suggest you go slower.
My Mom has inoperable cancer. The chemo was killing her. Lost 40 lbs and her disgestive system was burned. When I saw her (she lives in Oregon, I was apalled at her condition. Got her started on probiotics and ala vera juice to help her. Plus, Ensure. These are things that you can also do.
She got off Chemo for 2 weeks and has done some recovery. She's now on 1/2 the dose and is maintaining OK.
Back to your needs. Perhaps back off the level you are taking. Please co take probiotics. Perhaps contact the Holistic practitioner when you feel good enough.
Wish I lived closer - - I'd come with homemade soup (which I do for the Lymies in the Phoenix Valley) and give you a HUG!!
Search on LymeNet. There's a HUGE amount of information available to you for free.
I found MariaA (I think it is) has collected many of the goodies and posts them under General Support. Check it out when you can.
I am headed out to the store. I left you with my home number. Here is my cell - 480-225-7313. Call anytime, day or night.
Some people have been at this longer than me and know more, but I am learning fast.
llelnino Frequent Contributor Member # 16067 posted 01 November, 2008 01:29 PM -------------------------------------------------------------------------------- Thank you so much Grace for your kind words. I dont think that I will take those abx again they were just to harsh on my already very sensitive body. I did see a family doctor that does Homeopathy but I never tried it.
Do you think that I should see naturopath that does homeopathy? The thing is I was first diagnosed with CFS because of symptoms and chronic EBV levels. That is what made me look into Lyme.
I didnt have a positive Lyme test(Igenex) but several specific bands were reactive and then I received a positive Babesia M test(Igenex) I was so happy for this because at that time I felt that this was the cause for my illhealth but these days I really feel that CFS is my real problem and that there is no hope, that I will just have to learn to live with it.
My life has been taken away from me just when I thought that it was getting started. Thank you so much for listening.
Mike -------------------------------------------------------------------------------- Posts: 79 | From: New Jersey | Registered: Jun 2008
GraceT Frequent Contributor Member # 16558 posted 01 November, 2008 03:19 PM -------------------------------------------------------------------------------- HI Mike, I am sure sorry for what your body is going through.
My story is not as mind bending as WildCondors, but sickening none-the-less.
Your body is talking to you. Doctors do the best they can within the limits of their education and our laws. Drugs have worked for some. Lots of folks take prescriptions for Lyme because they have no other financial resources and they have insurance to pick up a portion of their tab.
My body has always done best on baby portions of medications, so when I learned what I might be going through I steered myself toward methods that can and do work without prescription drugs.
I have candida that I cannot get rid of due to Lyme, but the typical courses of presciption drugs only quiet this fungus, not cure it.
Would you be able to make an appointment with any of the doctors who practice homeopathy? If so, bring your lab results, bring your list of questions, definately make a list of ALL of your symptoms and listen closely... are they really listening to You.
When you walk out of their office, have they provided you with a written plan of attack, not just hand you some bottles telling you little?
I've been to about a dozen doctors here in this valley. Some were Internists, General Practioners, and an NP who did zero blood tests, looked at me funny and sent me on my way.
A couple were concerned, but took zero tests, and wanted to write me scripts for antidepresents or the like.
By accident I found an LLMD - He is 68 years old, has Lyme (but has not gotten himself in good health yet, however, he's out of his wheelchair now). His wife, daughter and grandson all have Lyme.
He sufferes the most with neuroborreliosis (Bb) and neuopathy, and has some facial palsey still slightly apparent.
I suffer from a bunch of symptoms, but have peeled a number of those back so far. I now deal with a lot of the neuroBb symptoms.
I have a rife machine - it's really, really helping. I got a SOTA LightWorks - but it's lame compared to the Bionic 800. I still use it anyway as it makes me feel a tiny bit better when I wake up hurting.
Taking the drops has really helped. I notice the drops because I started with Candida drops - this did not cure me, but it's gotten me more in control than anything else has so far. This problem has been painful, and since I can FEEL the difference, I know it has been working.
I've used Lymph and Liver Drainage drops and others.
As your sure Gotta run for now - hubby and I are hungry. Going out to a neat place called Seville. It's located about 5 miles South of us in Gilbert, AZ. -------------------------------------------------------------------------------- Posts: 64 | From: Arizona | Registered: Jul 2008
llelnino Frequent Contributor Member # 16067 posted 02 November, 2008 11:53 AM -------------------------------------------------------------------------------- I've heard about Arizona having great, DRY weather most of the time. I am thinking that I might go try and see a Naturopathic Doctor that does Homeopathy but that also draws blood as well.
Its just so hard to find someone who is very detailed and that checks for different things. The only person that I've seen that was pretty thorough wasnt even a doctor she was a nutritionist. She performed stool, saliva, and hair mineral tests to check for deficiencies.
The LLMD that I go to has Lyme and so does her family. She is very nice but I dont think that I have Lyme, maybe Babesia but I feel that these are effects of someone else rather than a cause. Really what do I know I'm not a doctor but I just feel that I will never be able to get rid of this whatever it may be. -------------------------------------------------------------------------------- Posts: 79 | From: New Jersey | Registered: Jun 2008
GraceT Frequent Contributor Member # 16558 posted 03 November, 2008 12:30 AM -------------------------------------------------------------------------------- My friend - Linda - is a nurse and she has Lyme. She's been through many avenues and has used Flagyl and Zithromax. She is out of town this week. When she comes over we can talk about your issues and see if she has any suggestions.
She comes to my home to use our Frequency Generator.
You mentioned Babesia. I had trouble sleeping last night (neuro problems are wosre at night)... so I opened and started to read another Lyme book.
Happens this one is about Babesia. As I learn - I'll share.
BOOK: The Health Care Professional's Guide to the Treatment and Diagnosis of Human Babesiosis
By: James Schaller, MD
Here is one quote: "This year many adults and children will go to an emergency room or their family physician for the following serious symptoms: *shortness of breath *unusual swelling *fatigue *poor appetite *intermittent fever *headaches *chills *nausea/vomiting *emotional liability *unproductive cough *sore throat * light sensitivity *belly pain *memopause *"old age" *poor long-term functioning
Both Dr. Schaller and Dr. Conrad said they believe some Babesia infections are routinely diagnosed as basic flu or other things.
"One way Babesia escapes detection is that it does not cause anemia - your red blood cell number is normal and you are sent home." "You are sent home because your breathing or temp. returns to normal and the true cause of your illness is entirely missed -- Babesia."
Skipping to medical options for Babesiosis - page 175 - Artemisia sources - Allergy Research Group tests the potency of every batch they sell (potency varies from one mfg to another...) - - Dr. Schaller says "I refer you to your health care provider to determine your ideal dosing plan."
Page 154 - use cholestyramine (3-4 packets per day) to bind biotoxins, remove all indoor mold, use 9-10 omega 3 enteric coated fish oil capsules per day [The enteric coating prevents the fish oil from annoying your stomach.]
**There is more to know - - If you do have Babesiosis, then this book is valuable. It talks about VEGF levels, but I don't know what these are yet as I am reading things out of order.------ I will read more later - - - hubby needs something.
---- There are journals by - LYME TIMES - Journal of the California Lyme Disease Association
I have not subscribed yet, but am going to. I really need to get on the stick and join. $35.00 membership for 1 year. I want to order this years issues. Email: [email protected]
FALL 2007 SUBJECTS: - Food Sensitivities - Role for Heparin - pH for Body's Health - Nutritional & Herba Supplements - Dirculatory Therapy with Detox program - Guide to Detox!! - Heavy Metal Detox - Modern Chinese Medicine - Blood Sugar & Insulin - Homeopathy treatmenet - Accupoints for Lyme - Acupunture, Qigoing & Yoga - HBOT - Silver Hodrosol <-- Good stuff - Rife Machine - Oxygen - Gallblader, Bile & Gallstones
SPRING 2007 SUBJECTS: - Burrascano - Antibiotics - Hormones - Drug and Supplement Interactions - Nutritional Deficiencies - Yeast Proglems - Probiotics - Holistic Food Basics - Juicing Benefits
I hope I've not made your eyes cross. Sometimes I get to typing and keep going. Often I avoid going to bed at night, because I know that's when the pain is worse. Sigh!
Never will I forget how bad I was last Feb/March. I really talked to myself a lot, prayed, cried, wanted to go to the Ocean one more time.
I cannot fathom how far I've come back, even though I have much more to go. I Will Win!!!Believe in Yourself! Believe in your Body! It wants to rebalance its self and heal. You are a valuable human. Your family and friends love you.
Go Slow. It took - how many years - for the spirochettes to develop their offspring inside our bodies? It will take many months of offense and defense to defeat them. Same in regards to the Viruses.
I once read where Babesia has to be dealt with first. Let me know what you decide and your plan of attach next. If you would rather this was posted on the Main Forum, then so be it.
llelnino Frequent Contributor Member # 16067 posted 03 November, 2008 10:40 AM --------------------------------------------------------------------------------
I quess the reason why I'm doubting Lyme/Babesia and that I really have CFS is because of the way it started sounds so much like classic CFS and not Lyme/Babesia.
The first time I became sick was Dec 2006 after I caught a flu virus that was going around and it took about a month and a half to go away but then I was fine for about a year until I got sick with another flu virus in Feb 2008.
I've been sick ever since. Mike
----------------------------- Can anyone provide Mike with some Tips on how to best help his Chronic Fatigue?
I get weekly B12 shots. This helps me. The naturopathic and Rife methods help me.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hyperbaric oxygen. Mild chamber is fine. Tucson has some and probably Phoenix.
Posts: 2276 | From united states | Registered: Jun 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My worse symptom is horrid chronic fatigue. It's undiscribable! It has improved a little since treating Babesia. While on antibiotics only, I got no where for 5 months. Now after 3 weeks on Malarone, I am already seeing a slight change in the fatigue.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I just came back from seeing a CFS specialist that deals with viral issues.
I still dont know what I really have. I most likely have CFS, Babesia and possibly Lyme and maybe more. Who knows this is all so frustrating and difficult to deal/live with day in and day out.
Posts: 103 | From New Jersey | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Hi Mike-
Have you tried any of Dr B.s suggested supplements? Specifically NT-Factor?
Also did low-dose cortef do anything for you?
The baseball player, Baldelli, has been in news for mitochondrial issues. He's about your age too I think. You may want to explore that as well...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I have not tried NT Factor but I will look into it. I still am on Cortef but I cant say that it has helped much at all. I have heard of Baldelli's condition but need to read up about how he became ill and what his exact symptoms are.
Posts: 103 | From New Jersey | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Mike, I still have fatigue as a primary symptom. I've been on 5 weeks of IM bicillin. Like you, low-dose cortef didn't seem to help so I discontinued for a while. It may be that a higher dose of cortef is required...upwards of 20-25 mgs but I was not willing to go there just yet. Even 20-25 mgs is not a full replacement dose and may be worth a try if other other measures turn out to be a dead-end. I'm not the susceptible HLA type so I don't know what my deal is either really (been sick for 2 years)....
Just one other idea....I assume you have ruled out something like type I diabetes? That can sneak up on you and cause fatigue. It happened to the QB for the Broncos, Cutler....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
No I havent gotten checked for diabettes and I probably shouldve since 2-3 people have it in my family.
Posts: 103 | From New Jersey | Registered: Jun 2008
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