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Hey Chronic Lymies Whom R Feeling Much Better, Whats Helped U the Absolute Most of All

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Posted 3/20/2012 9:24 PM (GMT -5)

I realize this question may push the rules so lets try to keep from posting spam and help as many suffering as possible. Ive been reading here for years and just today joined so i dont wanna get the boot for seeking and trying to help lol. I didn't see an introduction thread so im gonna mix it up in this first posting, alittle about the topic and alittle about me. .

Ive been dealing with Lyme for over half my life. My first bulls-eye reaction was 25yrs ago tho i didnt even know to go to the doctor growing up. Finally decided after seeing the same doc for 15yrs i gonna see an alternative dr and was tested positive 2yrs ago thru sending my blood to better lyme testing labs. I didn't think id ever get around to posting. Forgive me if im alittle hard to understand as i have a hard time with grammar even tho i do alot of proof reading before i post.

Im sorry but i cant help to especially admire those of you with Lyme living alone with little to no support. For us its truly a challenge but i think sometimes were better off as i know several locally with Lyme whom have all the support they can stand but they end up physically doin less for themselves and usually get worse. It seems so manditory to "show up" for this disease yet ive found myself missing so many important appointments and missing part of the daily scripts/supplements, not good.

Lyme patients differ alot in what helps <> what doesn't, being its such a complex disease. Alot of us in 2nd and mostly 3rd stage Lyme become so weak with atrophy of the muscles and brain it becomes hard to keep up the constant effort it requires to live, seek/continue treatment and for many their stories are of horror!

Too many treatments for Lyme + co-infections for me to recall so ill keep it simple and open-minded to all known lyme treatments. Fact is many of us suffer from vitamin deficiencies due many times to our GI tracts being out of wack and the body can't properly absorb the nutrients, also theres lack of sunshine, poor diet choices, food allergies and oral antibiotics. Many have hormonal dysfunctions from thyroid issues, neurological factors, horrible pain, sleep disorders and we all suffer from chronic inflammation.

Positivity vs Negativity, some say "dont become toxic" ~ I struggle with this one big time.. Seeing ill people that are so nice and positive  i just never use to could get ! I feel like s**t so often and dont wanna smile nor "be nice" i feel like one of my bulldogs when a stranger aproaches lol. Im learning this is so so so important, having a positive attitude "fake it till u make it" as u can put it means even more than we thought. Seems its being proven that positive thinking releases different enzymes than negative thinking and has a different impact on the bodys chemistry.

Remember "you are what you eat" well i also believe in "attitude is everything", that negative thinking as well as blaming others just manifest itself in making an illness worse.

I know im gonna forget many things being i did this right off the top of my head and must live by making list but i was moved to post this now ! So weather its diet change, rehab/phisical therapy, medication, antibiotics natural and prescription, supplements, detoxing, hyperbaric oxygen therapy, rife machine, IV C, chelation, ect..

What 1 or several things made the absolute biggest difference in you feeling better and/or enableling you to make positive progress in your Lyme Disease ?

Thank You, LymeBait

Post Edited (LymeBait) : 3/20/2012 10:00:22 PM (GMT-6)

Posted 3/20/2012 10:01 PM (GMT -5)
1. for me it has been dealing with the fibrin..ie taking blood thinning med-supps
-heparin
-virastop from enzmyatica
-vit c 2-3 grams a dose) + 2 grams lysine-3-4 times a day (good anti viral and plaque cleansing)
-gingko biloba did not seem to do much
-lumbrokinsase-buoloke did not seem to do much
-bromelain is suppsoed to be good for breaking up fibrin
^^^^^bug killing increases fibrin and my body must have a load of it right now which i think affects for me anyway, everything from sleep to energy to brain, being able to think..i have noticed only in last 2 months as I have been on a viral and lyme killing adventure, that now even when i have say 2 eggs in the am, it seems to immediately create sluggishness in blood (re cholesterol) and i get tired, weak, sore, heart seems to get sore..
so i think keeping the blood flowing is numero uno
==================================================================

2. improving gut meaning having regular bms and not becoming constipated which means these die offs just recirculate and pollute our bodies


3. sleep
Posted 3/21/2012 5:43 AM (GMT -5)
Sleep - first and foremost helped me to recover during my other Lyme flares and this one as well. Very frustrating until I was able to sleep.

Second is to stay engaged and independent as possible with life. I am a stubborn person who refuses to give in to this menace and it's gotten me through a half dozen Lyme flares in the 35+ years I have had the disease. It's no picnic and I do throw myself pity parties every once on a while but, generally, no matter how bad I feel, I get my butt out of bed and get to work or grocery shopping or whatever. This seems to limit the scope of the flares in both intensity and duration (average flare duration is 12 months, maybe 15). I agree with merc above that folks that rely less on others to work it through, recover more quickly and decisively. But the support network is good as long as you do not come to over rely upon it.

Finally, exercise! I know this flies in the face of burrascano, but it works for me. I think it contributes to the second reason above ...it helps me stayed engaged
I get a feeling of accomplishment, not to mention that it kills of the bugs and detoxes the body through sweat rather than relying entirely on the liver and other internal organs.

Even though, I've had Lyme 35+ years, I did not know until this past June when I was tested as glaringly positive. Bio testing showed me with 3x the Bb load of a typical patient with almost all my symptoms neuro-based. Yet, using the above methods, I have been able to live a good life with only abt 6 or so one year flares even WITHOUT me knowing I had Lyme (e.g. NO formal treatment until this past year)! I am hoping treatment eradicates it for good this time!

Hope this helps.

Post Edited (yazzer) : 3/21/2012 6:34:58 AM (GMT-6)

Posted 3/21/2012 6:24 AM (GMT -5)
I am currently feeling the best I have in 10 years. Believe I was infected about 12 years ago and diagnosed 3 years ago.
For me, (1) finding the right LLMD is what did the trick and then (2) following a strict regime of meds and supplements including antibiotics, antidepressants, antianxiety, antiviral, immune boosters, cyst busters, antioxidants, etc. and then (3) determination. I am a control freak so beating this thing became an obsession . Research is an absolutely must with lyme. The more you know, the more you can help yourself.

Acceptance played a big role but I don't think I was able to get to that point until my head was clear and for me that required treatment before I could restore calm and postitive thinking.
Posted 3/21/2012 7:44 AM (GMT -5)
Great thread, LymeBait!

Get rest when you need it, do as much as you can when you can.

Let go what you can't do and rejoice in what you can

Getting the gut working properly so you can get rid of what you don't need.

Focus on what you are getting better for -- have a goal to hold onto.
Posted 3/21/2012 7:59 AM (GMT -5)
LymeBait - one other thing you said I want to expound upon:

LymeBait said...

Positivity vs Negativity, some say "dont become toxic" ~ I struggle with this one big time.. Seeing ill people that are so nice and positive  i just never use to could get ! I feel like s**t so often and dont wanna smile nor "be nice" i feel like one of my bulldogs when a stranger aproaches lol. Im learning this is so so so important, having a positive attitude "fake it till u make it" as u can put it means even more than we thought. Seems its being proven that positive thinking releases different enzymes than negative thinking and has a different impact on the bodys chemistry.

Remember "you are what you eat" well i also believe in "attitude is everything", that negative thinking as well as blaming others just manifest itself in making an illness worse.

This, to me is of paramount importance - I love your quote "fake it till u make it" - this is much more true that most imagine. When the mind is engaged in the treatment in a positive way, it does wonders to realign the physical body to face the task of getting better. Plus, to extend that one step further, as I am literally a NASA 'rocket scientist', I want to know anything and everything about my disease and what needs to be done to overcome it. "Knowledge is power" as is often said and that works - TO A POINT. I have also succumbed to being so OBSESSED with searching the internet for "solutions" that I think I sabotage my ability to get well. What I mean is, when we obsess over the condition so much, we begin to live the disease 24/7 and inadvertently become our own worst enemies. Now I make it a point to not spend more tha 1/2 hour or less a day looking up things or even thinking of the illness. I met one guy around here who was a walking encyclopedia of knowledge about Lyme and coinfections, mercury, cranial sacral, mold, mildew, etc., etc. It was amazing but I think ultimately detrimental to him getting better. He has become his disease. 

Anway, I just wanted to say that I thought you made an excellent point with this idea of "fake it till you make it"...thanks for sharing as I will use that mantra from time-to-time in the future myself!

 

Posted 3/21/2012 9:00 AM (GMT -5)
Hi LymeBait!

I'm not new to Lyme at all (probably had since a child, but tested positive about 4 years ago) but I am new to knowing about it and starting treatment about 2 weeks ago. I have completely changed my diet around and I think that has helped with some of my neuro symptoms and it has eased up on my RLS at times.

I have now realized diet and sleep are very important. I am stopping to force myself out of bed as early as I was before to "relax" before going to work. It was only making it worse. I do have to hold down a full time job though and I wish I didn't because I know I would be better off without it, but I can't afford not to have it.

I also try and drink a lot of water during the day. I believe it helps. I am too new to comment and I haven't had anything that has really done wonders for me as I am still so sick.

I also have a very hard time with attitude. I fake it till I can make it too..Great saying.
Posted 3/21/2012 5:32 PM (GMT -5)
LymeBait,

So many people have given you so much personal information already! I just will say welcome to the Lyme forum on Healing Well as I see this is your first post.

Good thread, Bait!
Posted 3/21/2012 6:37 PM (GMT -5)
This is my first time writting.I'm in my thirties and healthy. I'm suffering at this point. i need all I can get from all the resources. I have Lyme. I have already been on one dose of Doxycycline and the Doctor would like me on another round.

The History:
Oct. I had breathing issues and felt tired.A low grade fever. about a week of it. The breathing at its worse GASPING for air in the middle of the night. I decided I see the Md. She said a virus or anxiety attacts. If I didn't feel better in a ffew weeks I should return. I didn't and this time on my return I saw my primary Doctor. What I need to say in all of this is that I have a rash that looks as if it's an allegeric reaction to something under my breast and on my back it stays for a day or so. Moving on to when I saw my primary Doc. I was having muscle and joint pain. I was still loosing my voice anfd having a hard time breathing. She had no time for me and blew off to what I can't recall and gave me a Z-pack. I felt better for a bit but the same rash came back so I went to see the Doc again. My primary unavailable. This Doc thought it was some kind of rash to a lotion,soap,ect... I did try a new soap at the time (Dove) and stop the use of it.

Jan2012
ER vsit. I never could shake my aches and pains they only seem to worse with a rash to follow it (always in the same place). I was walking into my office and fell to one side onto my printer. Yep! just lost my balance for no reason. I was scared. I want to say Iall this time I was in process of changing primary so that is why I was waiting to return. Anyways, The ER and all the other Doctors are within the same hospital. The ER Doc. took blood and discovered Lyme.

They say that it is the eary stage afew weeks I had it the IgG. but do you think that may be a negative positive. because here I am last night my spine hurt my thighs hurt low fever and wham! the rash on my back and uder my breast.


I feel that all I am to the Doctors are noise..

Bugbite
Posted 3/21/2012 7:18 PM (GMT -5)
Welcome to the forum bbite. My best advice is keep making as much noise as you can, believe me, you may have to to get proper treatment. Even if it is in the early stages, I would settle for nothing less than 3 months of antibiotics. I would strongly recommend finding an LLMD. That way you are under the treatment of someone that specializes in lyme. You don't want to fool around with lyme. The quicker you get the best treatment, the better.
Posted 3/21/2012 7:33 PM (GMT -5)
on one of the bartonella forums they talk about legs collapsing and people falling. this was happening to me
about a year ago and i thought it was potassium deficiency as all th emetals i had were displacing potassium..however now i think it may have been bart related

some on the other sites, say shortness of breath isI believe babesia.not 100% sure on this though

the rash could be a herpes outbreak..sometimes stress or sunlight or eating lots of nuts can cause
Posted 3/21/2012 8:49 PM (GMT -5)
great info sringsjean. I mention long term meds. and was blown off. Intresting that their was a mention in another post about potassium. I have been taken for about a year a low dose Spirolactone for my acne Works wonder but warnings of potassium. Breathing... Lyme I have read will affect respatory. The rash has been seen by one of the Docs. and he deterimed it was an allergic reaction. Again, it waxes and wains. My joints,then muscles,voice and rash all the while my breathing is hard andnot to mention that when the ER and other Doc. appointments check oxygen level it was at 100%.
Posted 3/21/2012 9:54 PM (GMT -5)
Hi Lymebait - just wanted to welcome you to the forum! Everyone's experience with Lyme is so different, and so many different things do and don't work for everyone - but I think the few things we can all agree on are a healthy diet, healthy sleep patterns, and healthy emotions! And patience - lots and lots of patience. It also helps to know what you're up against - like someone else said...research!


bbite - welcome to you as well! Please let us know if you need help finding a LLMD (lyme literate medical doctor) - while it sadly is the case that so many doctors see us as just a lot of noise, it doesn't have to be that way! A true LLMD who is knowledgable about Lyme and trained to treat it appropriately will take you more seriously, treat you more thoroughly, and usually overall it's a much better experience than going through mainstream doctors who may mean well but simply aren't educated about these infections!
Posted 3/22/2012 1:23 AM (GMT -5)
I have been sick for as long as I can remember with one thing after another. I believe my lymes symptoms started with major nasal infections/weird feelings in hands/extreme fatigue/low grade fevers. Then progressed into endometreosis/ulcers/temp problem/night sweats/vision problems. Then it seemed to all hit me with extreme mind fog/loss of feeling anywhere in my body/rash/mental confusion/nausea/vomiting/strage bowl problems/everything became overly sensitive and overly stimulated/diagnosed with RA factors/pain everywhere/feeling like pins were sticking me and bugs were running all over me/brain spotting so bad it showed on catscan. (then mri was takin) doctors were baffled/sleep atnea/add/heart palpatations/enlargement of heart and liver/eyes were streaked with red, hurt and double vision, when i move everything creaked or cracked/the pressure in my head was unbearable!/ringing and partial deafness made me crazy/itchy/and probably much more

What I believe to be herxes are the nasal infections and more frequent bowel movements night sweats fevers and eye jam. I think that when I am fighting this off it literally come out of my body.

So far the antibiotics (6 months amoxicillin and 2 months erythromycin have helped). The brain spotting has fully dissapeared. My eyes have not fully gotten better but no more double vision. The itchies have died down somewhat. Heart feels better(stress is a big part of that, dont let yourself get stressed out) I have two kids and a difficult family but I just tell myself this is my life at stake! Brain fog went away for the mostpart but add and memory still altered (not nearly as bad though) My limbs have not been falling asleep as often. I am still alive!

The other naturals and vitamin I take on and off so I dont damage the liver are as follows: (listed in the order in which I believe I felt the most relief from to the least)
Omega-3, oil of oregano, cats claw, pau d' arco, vitamin c with msm drink, vit d, magnesium, grape seed, I also take milk thistle and picrorhiza for liver, CO Q-10, helped with heart during the worst of times. I also drink vitamin drinks and make lots of fruit shakes. I try to eat organic. I will never eat a cake again. Sometimes use echinacea tea. I try other teas but dont think they accomplish much. Echinacea could be bad for those with allergies to ragweed. I keep myself warm. Love sunlight ( not too much though). Get as much sleep when and if I can. Excersize but not too much. Drink lots of fluids (through a pur filtet). Peaches are awsome. I always feel better after peach and yogert smoothies with papaya and bananas added. But from what ive heard the sugars are bad for lyme. I dont know why fruits seem so helpfull to me. Dont ever eat fastfood!!! Good luck to everyone and wishing you healthy healing.
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