Lyme Disease Support Group

I am newly diagnosed after at least 4 years possibly more, not sure.After seeing around 14 doctors and spending tons on testing I still had no relief. I was being treated by a rhuematologist who was unwilling to give me a diagnoses but willing to treat me as if I had lupus with many Rx's for the last year and 1/2.

While he was one of the few docs that did not want me to see a psychologist I just kept walking away from appointments with more questions than before and increasing symptoms.

Finally so ill I left my new husband of less than two months in Washington (he has been great) to stay with my parents in Alaska (at 42 yrs) who wanted me to see a doctor of my mom's.

Thank goodness for the few outstanding practicioners! I repeatedly asked for a lyme test and was told no Washington doesn't have lyme. Even in light of the fact I am outdoors as much as possible, garden, hiking, kayaking, volunteer at our native wildlife park and local animal shelter. Not to mention I started my work years off with Fish & Wildlife in the Aleautian Islands. First western blot came back POSITIVE and currently very active. Sweet relief in the knowledge of what I have been up against.Still a little confused on how to interpret labs but also have some heavy metal issues just to confuse things.

I am just starting a protocol of Biaxin and Plaquenil and of course many others. There are many treatment guidlines and the more I search for info the more conflicting it all is.

My question after this lengthy intro is if anyone has tried a life force machine? My doctor suggested this may help minimize the antibiotic course and get me feeling better quicker.

If you have knowledge of this or similar I would love to hear your feed back. Positive and or negative. Also suggestions are more than welcome. This has been a very frightening last 3 years especially. I'm happy to share more info if I didn't already over share.

I am also excited to read your stories as I found I am not alone. Thanks Nat

Sorry to hear that you have had to run the gauntlet like so many of us...but it did bring you here...

OK, so I quickly googled Life Force Machine...

One I found was for purifying water...and energizing the water with environmental energy...

The other looks like - well basically a massage machine...good for massaging the lymph glands and such...here is a blurb:

*********

Summary of the Sun Ancon Chi Machine Benefits:

Simply lie down, set the timer for 4-6 minutes and the Chi Machine will do the rest.

2 minutes minimum for the frail or the unwell, to 20 minutes maximum, per session - 1-3 times daily.

# A powerful lymphatic massage, thereby removing toxicity which causes needless pain and disease.

# Spinal alignment, poor posture correction, relief from back pain.

# Increased blood circulation, blood cell production and bone marrow activity.

# Creates oxygen access to the lungs, thereby inducing energy, activity and ability.

# Reduces/eliminates nerve pain and muscle fatigue, thereby creating freedom from pain debilitation.

# Fine tunes the autonomic nervous system, relieving insomnia, digestive problems and constipation.

# Strengthens and improves stomach functions - Regulates the appetite and associated disorders.

# Stimulates metabolism, enhances athletic performance - disperses lactic acid.

# Regulates, stimulates and exercises internal organs - kidneys, gall bladder, intestines, etc.

# Strengthens the Immune, respiratory, circulatory, digestive, urinary and reproductive systems.

# Excellent for relaxation and de-stress as changes Beta brainwaves to relaxed Alpha brainwave state.

# Excellent for Menopause - Keeps weight under control if used twice daily.

# Increases personal chi life force energy flow (the rush you feel when the machine stops).

*********

Now does it work? have NO idea...but hey. it sure doesnt appear to be able to hurt you...

So here is where I say GO FOR IT...if in fact what your doc is talking about is the thing I found here...it appears that it could help you...

The interesting thing, is that it mentions Lymphatic Massage...we have some members who are having issues with enlarged Lymph glands...so this could be something to help with that...

Give it a try - and let us all know...

Well must run...so again, welcome welcome...

PM anytime for anything

Christine

KATI

Welcome here...I am so sorry that your story is so similar to so many but I am so relieved for you to hear you finally have a physician and a diagnosis. That really is a huge part of the battle.

Do you know what you are taking the Planquenil for? I am curious. I take it for the coinfection, Babesia. Did your doc mention coinfections?

I have not heard anything about Life force machine.

There are so many variables and different things to try.

Just as everyone is a unique individual, the disease and Co effects each person differently and treatments need to be tailored to an individual's needs.

I have, so far, only tried several diferent oral antibiotics and supplements to support immune function and help with detox.

I also see a massage therapist when I can. I am going to try accupuncture and HBOT next.

Please look around at past threads and in our info and activism rooms for some more good information.

Welcome aboard! I think you'll find we are an agreeable lot with a ton of experience between us. I know there will be others along shortly with some more suggestions...

Post edited by: dharma79, at: 04/10/2009 07:50

I was on the plaquinel/hydroxychlorquine for lupus. The rheumatologist I was seeing thought I had it due to elevated ANA. It actually after months of taking it got my fever under control. For the past year or so I have had a constant mild fever of 99 to 100.

My new doc saw this result did some research and decided after that to continue. She feels it will continue to control the fever and said that in conjuction with the Biaxin will help it absorb better.

I don't have any lyme coinfection according to the western blot. I do however have mycoplasma pneumoniae along with yeast overgrowth issues.

I also have just been tested for toxic metals and have some off the chart issues with mercury, antimony, lead, tin, zinc and copper. Hmmm sounds like I've been sucking on a broken thermometer and chewing on various metal pipes. LOL There is a treatment to help eliminate the toxic levels but darned if I can remember.

It all gets a bit overwhelming at times and especially when I just am not feeling with it. You know those days even if you could drive its best not to for fear of getting lost with that brain fog and short term memory issue.

Allergies have also become an issue over the last several years to the point where its not just foods but certain vitamins as well. I am trying the NAETs for allergy elimination which includes accupressure and accupuncture. This seems to be helping tremendously!

What is HBOT? Let me know how it works and if it works for you. I am so open to anything that will help at this time. Thanks again and you have a mostly fabulous day!

Nat

PS bear with me, not sure how this site works yet so hopefully I am in the right place.

I'm not a doctor, but I think you probably do have a coinfection...probably Babesia like me.

The WB doesn't test for Coinfections. They are separate tests.

Either way, you are on the planquenil, so that is good.

Ask your doc to look into it. Is your doc a Lyme Literate MD (LLMD)?

As far as driving, I can't do it anymore. Too many reasons why...my messed up vision, severe car sickness, arms and legs twithcing and jerking, and,of course, the never knowing when you are going to lose your mind...LOL Most of the time my daughter is in the car with me. I just can't chance it.

Glad you are here, Nat. Keep us posted!

Post edited by: dharma79, at: 04/12/2009 07:25

Dharma is my oldest daughter with Lyme, I have another daughter and myself who are infected.Also my granddaughter.

Im looking into the hbot for dharma. I think being she is sickest we will see the best results with her.

Hardball also uses the hbot so see if you can find any of her posts.She told me she actually got her insurance company to pay for her treatments.

I would also like to try the biomat. I wish they werent all so expensive.

The plaq is usually for the co infection babesia as Dharma said and normally if you use it or more importantly malarone (both antiprotazoals/antimalarials) you would use it in conjuction with zithromycin BUT biaxin is a mycin as well so maybe that's what the doc is describing.

Either way you are being covered for both the Bb (borellia burgdorferi) bacteria that causes Lyme, and babesia which is the co infection much like malaria.

HBOT is hyperbaric oxygen therapy, increasing oxygenation to the cells and accelerates healing, it used to be primarily used for open wounds but they have found that it can make a world of difference with chronic illness/infections.

I haven't tried it yet though.

There are articles here on it, I posted some in the facts section and the article section as well.

glad to have you.

This rheumatologist- is this doc treating you 'unofficially' for Lyme- it sounds like it, and that is fine but make sure you are on ENOUGH of the meds to kill lyme- biaxin should be 600 and the other, I am not familiar with dosage.

Whether you have a co infection/ babesia or NOT- studies do show that all macrolides such as biaxin work better when combined with a lysosomotropic like plaquenil. As far as I know it is immunosuppressive which sort of concerns me but don't be alarmed. That could just be me.

I have heard of LOTS of Lyme patients being on it.

Let us know your concerns.

How long have you been on this combo? You do not have Lupus right? Lupus can be caused by Lyme so I am just checking but you would have to fit the profile- ANA/etc

Thank you for the info! No I am not being treated by the rhuemie that thought I had lupus he is in Washington with all the other doctors I couldn't wait to leave behind. I do have an elevated ANA but he was not convinced it was lupus. mayby raynaud's causing that? Regardless he was the only doc left on my long list that even listened let alone believe me.

I am now in Alaska seeing a doctor and friend of my Mom's. She has been following my story via mom from the very beggining. After asking for a lyme test at my last dr appt with an internist He basically blew me off but said fine and never did. Instead at my next visit he suggested a shrink. That was it I took my parents up on their offer, actually they had been begging me to come up. But you know I just found it impossible that in such a large area (Tacoma/Seattle was closest you may know)someone should be able to help me. Nope, not so!

My new doc in Alaska is getting me started on treatment would like to keep me up here get me a little stronger and increase my stamina for about a month. I just started 6 days ago on the biaxin but have take the plaq for a little over a year.

Then doc is researching llmd's in my area for me and also using her rosters from conventions, classes and physicians she knows are keeping up with the latest stuff someone she know's will be able to administer the remainder of my treatment and attends the latest teachings on lyme.

If I hadn't just married March 2nd I may not be in such a hurry to go home. But quite frankly nothing good was happening laying in bed all day. To add to that I am just getting worse it seems and I would like to go home and give hubby a reminder of who he married Hopefuly at least visibly improved.

Weight loss has leveled off so I guess that is a good sign and even since I started on all the supplements doc had me start on a month a go also made my bells palsy a little better. Unfortunately I have always had a big warm smile but when the palsy hit my face looks uncontrolably mean and harsh.

Well tonite pain is better thank goodness, but fatigue is kicking the legs and fingers out from under me.

Until later take care, Nat

By the way are you in Canada?