Hi, Please let me know if there are people thinking that they don't have lyme but having lyme sx.
Who are thinking that they are diagnosed for lyme for other illnesses and why?
Who are taking the abx treatment just to be on safe side?
Here I am waiting for the appt with LLMD
Thanks,
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by martha2006:
Who are thinking that they are diagnosed for lyme for other illnesses and why?
[/qb]
Please explain???
Many of us doubted we really had Lyme, but the treatment convinced us!
PS....Welcome! Posted by pattilynn (Member # 8065) on :
I just started treatment this week. I doubt I have lyme. I have numbness, tingling, weakness, hyperactive reflexes, twitching all over.
I had 3 bullseye rashes in 1992 followed about 6 months later by full-blown neuro syndrome, fevers, rashes, you name it. I took antibiotics for a few months and got better, not 100% but improved. The numbness and tingling went away anyway. I've always had aches, fatigue, weird rashes etc....
All my symptoms returned in 2005 after neck surgery. I don't know why, but I doubt lyme.
Patti
Posted by map1131 (Member # 2022) on :
In the beginning I had a lot of doubt. Nothing made sense to me. It was like no illness I ever had in 42 yrs. All I needed was a pill and it would be fixed, wouldn't it????
Questions? No answers! More symptoms. No symptoms. 40 different symptoms one day, 5 the next day. How that can be?
I thought I was losing my mind. Then finally the reality hit me. This is lyme disease and it is ugly. I was so frightened. I had always been in control and could handle anything thrown at me.
I found this site and started reading posts from people that talked about things I was experiencing and had to accept, it is what it is.
Then I decided I wasn't going to just accept it. I'm going to fight it with all I have. Knowledge is power. Six years later I'm still learning about this thing called lyme disease.
Lyme causes so many symptoms which mimic over 200 different diseases. My symptoms might not match your symptoms, or the next persons symptoms.
I understand feeling so confused and being doubtful. I was there myself and will never forget it.
May your journey to good health be a short time period.
Pam
Posted by cantgiveupyet (Member # 8165) on :
I do.
The doubt can really eat you up. I keep thinking nah cant be lyme...has to be cancer.....then i get into the whole
yeast/lyme battle in my mind....is it yeast am i feeding the yeast with abx.
I was bit in 2000 that i do know.......ive been sick since may 13th 2005 when i came down with bronchitis that started as a sore throat
it wouldnt let go of me...i had 2 months where i was ok, then bam it hit hard in August. all i remember is having sensitivity to light one day
running to the bathroom every 5 min the next. Its been in my bladder ever since.
I didnt test positive but showed some positive bands.
I am taking abx and hoping i will see some improvement...but the doubt is still with me.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by pattilynn:
I had 3 bullseye rashes in 1992 followed about 6 months later by full-blown neuro syndrome, fevers, rashes, you name it. I took antibiotics for a few months and got better, not 100% but improved. The numbness and tingling went away anyway. I've always had aches, fatigue, weird rashes etc....
All my symptoms returned in 2005 after neck surgery. I don't know why, but I doubt lyme.
[/qb]
What's to doubt? You have plenty of Lyme symptoms. Lyme often resurfaces following trauma, surgery, pregnancy, etc.
Posted by pattilynn (Member # 8065) on :
I think I doubt it because my test result was completely negative, no bands. That was LabCorp. I know is a bad lab. I just think "something" should have shown up, even from a garbage lab.
I'm waiting for my Igenex results and am in the middle of an antibiotic urine challenge test for lyme.
Posted by jantarstd3 (Member # 8954) on :
It is quite likely you have B12 deficiency induced by surgery.
I would start loading on B12 and if you are taking abx I would not stop for the moment. It could be lyme.
If I were you I would treat lyme and look for other cause...
Posted by pattilynn (Member # 8065) on :
I had B12 checked prior to surgery. It was in a very good range.
I've also had multiple test for MS. All results were negative.
Posted by break the chains (Member # 5668) on :
everyone get tested for mycoplasma! 60-80%+ of us have mycoplasma. it is the real problem because it was created in a lab as a bioweapon. look up gulf war syndrome, they have almost exactly the same symptoms as us. learn about garth nickelson, the one who created the mycoplasma pcr test. mycoplasma is how you can have someone with the same symptoms as us, but not showing "lyme disease." this is called being seronegative, and there is a good explaination for it. there are many many other labels given to people with different manifestions of the mycoplasma. diseases with no real clear cause, they are only labels that simply describe a system or area of the body affected by mycoplasma. for example i have seen studies of people with ms where 50-60%+ have the mycoplasma, its rampant in all of these similar chornic debilitating illnesses. if you look up mycoplasma you will find a large list. mycoplasma is the real killer. i have done years of antibioitcs, and tests show that the lyme has been erradicated. you need to make sure you get the right drugs too, only some abx target mycoplasmas. mycoplasma loves surgery and trauma too, it will sit dormant for years and years and then when it sees an opertune time it will go nuts. best of luck
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by break the chains: i have done years of antibioitcs, and tests show that the lyme has been erradicated.
Hi Chains. You make an excellent point about mycoplasma and one I vow to look into myself.
However, there is no test to show that the Lyme bacteria has been "eradicated."
Testing negative on a western blot following treatment proves nothing -- it may mean the bacteria is gone, if it was caught early enough.
However, it is equally likely, in late disseminated lyme, to mean it has just become more wily at surviving under adverse conditions.
Michelle
Posted by minimonkey (Member # 8693) on :
From what I've read, mycoplasma is everywhere! Doxy seems to be the first-line treatment of choice for it, and like Lyme, it takes a while to knock it out. I think probably the best defense against this is to do everything possible to strengthen the immune system in addition to taking the abx -- since the possiblity of re-infection is so great.... get your system strong enough to keep it at bay... just my opinion.
Posted by JimBoB (Member # 8454) on :
I have NOT been tested for Lyme or any other of the diseases associated with it.
I have been clinically diagnosed over 6 years ago and treated with Cipro, but it returned after a short period of remission.
I don't know WHY anyone would treat if in DOUBT that they have it. IF they are not sure, then I can understand doing it, "just in case". But IF I doubted that I had it, i would do whatever I could afford to do to find out what it really is.
Just MHO.
Jim Posted by cantgiveupyet (Member # 8165) on :
Well Jim,
I was clinically diagnosed, but without a positive test i doubt i have it. Its a grey area for me right now.
Plus I have no clue how to go about finding a duck to figure out what i havea. Labs come back perfecto.
And ducks base everything on labs.
Since mine is mainly bladder related right now, i do have a urology team working on the case.
I do suspect thyroid....but again labs come back within normal range even though i have symptoms.
Posted by 5dana8 (Member # 7935) on :
hi Martha
There are alot of reasons why a person with lyme doesn't always test positive.
Go to this link.
Read the third psot down Cave76. Topics by Tom Grier. He is dead on accurate:
Make sure to talk over everything first with your LLMD
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by pattilynn: I just think "something" should have shown up, even from a garbage lab.
[/QB]
REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR 1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 4. Spirochetes are deep in host tissue 5. Only blebs in body fluid; no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10.Utilization of host protease instead of microbial protease 11.Spirochete in dormancy phase 12.Recent antibiotic treatment 13.Recent anti-inflammatory treatment 14.Concomitant infection with babesia may cause immunosuppression 15.Other causes of immunosuppression 16.Lab with poor technical capability for Lyme disease 17.Lab tests not standardized for late stage disease 18.Lab tests labeled "for investigational use only" 19.CDC criteria is epidemiological, not a diagnostic criteria
from Brodiemack: My understanding is that the LD test depends on 'free-floating' antibodies - ones not yet attached and working. A high positive test in an asymptomic person, means loads of free antibodies which could indicate that the immune system is coping well on its own. A far more sick person, who's immune system is overwhelmed, will have few if any free antibodies as they are all engaged in the fight and thus will test negative.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by JimBoB: I don't know WHY anyone would treat if in DOUBT that they have it. [/QB]
Because it's too dangerous to leave Lyme disease untreated!!
Posted by pattilynn (Member # 8065) on :
I don't know WHY anyone would treat if in DOUBT that they have it. IF they are not sure, then I can understand doing it, "just in case". But IF I doubted that I had it, i would do whatever I could afford to do to find out what it really is.
Just MHO. __________________________________________________
I have done everything I can do to find out. I'm at a total loss.
I've seen 3 neuro's. The first one said "I don't have a clue what's wrong with you" and sent me to another neuro.
The second one first said it was from my neck surgery. The he said "we may never know what's wrong with you".
The third one said fibromyalgia.
All three said it wasn't MS.
I've had 2 MRI's of the brain, 2 MRI's of cervical spine, thoracic and lumbar MRI's, EMG of legs, evoked potentials, lab work. All results normal.
All three ordered the testing but said they knew the results would be normal.
All three said they didn't think I have a serious disease.
Then why is it so hard for me to walk? My legs are weak, numb,tingly amongst many other symptoms.
I a desperate for an answer to these problems. This is why I am taking the treatment. It helped me before.
Patti
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by pattilynn:
All three said they didn't think I have a serious disease.
[/QB]
That REALLY shows how clueless regular ducks can be!
You said you've had improvement before on abx?? That's a big clue right there!
So you have an LLMD? I'm sorry if I missed that part somewhere. Been tested by Igenex??
Posted by Lymetoo (Member # 743) on :
What happened to martha??
Posted by pattilynn (Member # 8065) on :
I do have a llmd. Igenex test drawn 2 weeks ago. I'm in the middle of an antibiotic urine challenge too, since if I have it it's late stage (1992).
Thanks for asking anout me Lymetoo.
Patti
Posted by pab (Member # 904) on :
quote:Originally posted by cantgiveupyet: I was clinically diagnosed, but without a positive test i doubt i have it. Its a grey area for me right now
Have you been tested by Igenex? I think that would be a good place to start.
Posted by Lymetoo (Member # 743) on :
Hey, Cant'... Your test was not CDC positive, but you have Lyme-specific bands....READ Dr C's explanation again:
quote:Originally posted by break the chains: i have done years of antibioitcs, and tests show that the lyme has been erradicated.
Hi Chains. You make an excellent point about mycoplasma and one I vow to look into myself.
However, there is no test to show that the Lyme bacteria has been "eradicated."
Testing negative on a western blot following treatment proves nothing -- it may mean the bacteria is gone, if it was caught early enough.
However, it is equally likely, in late disseminated lyme, to mean it has just become more wily at surviving under adverse conditions.
i am not talking about blood tests. i do not believe it is possible to absolutely prove lyme disease is gone with a blood test, although doing a lot of pcrs along with major improvement would suggest that the disease state was improving. my dr, dr r in ct, a llmd and co-founder of ilads, uses muscle testing with various strenghts of pathogen vials. i do not put great trust in most blood tests, but i do trust my energetic body and higher self to guide me when it comes to muscle testing and dowsing. i did allergy treatments for a long time with a professional dowser and found it amazing. i am not suggesting that every single bug is dead, only that they were mostly wiped out to where they should not have been too much of a problem like my doc found. i now do pedulum dowsing myself and am suprised how much you can do with it. i had no idea before i really got into it and saw complex charts. i make my own charts and stuff for it now. all my supplements, and most of what i do i dowse. i am starting to do "rife" now and have dowsed some simple settings on the high power magnetic pulser, and i dowse what kmt program to run almost daily. i hope to dowse the more complicated actual frequecies for a plamsa bulb style real rife machine with custom pendulum charts. the other two are energetic healing devices and do not use rife technology.
mycoplasma is a bioweapon that is rapant and not to be underestimated. i spent over 4 years on abx only to have them ruin my GI tract (to where i can heardly eat anything) and make me worse. my friend seeing dr j here for 6 years who is about as sick as i am has had iv for 4 years and was just hospitialized for a week with colitis. he has not really improved at all either, i think its safe to say hes worse off. he knows he has mycoplasma too, but has been taking the same drug for a very long time which does not go after mycoplasma. the doxy iv i had was the only thing that went after the mycos and actually helped me a bit (as far as abx go), but when i went off i got a lot worse quickly as they came out of dormancy. i am finally off abx now and feel i am improving with a combination of many natural methods. one of the main things they say triggers especially mycos is any kind of trauma or stress.
brett
Posted by henson2 (Member # 463) on :
What are some other treatments for mycoplasma?
Years ago, I had what they called "mycoplasma pneumonia," and I seemed to be cured of it. My PCP said that the 2 mycoplasmas (as in infection, and pneumonia) are not the same thing. That confuses me.
Is there a test? Other abx for it? Do anti-bacterial herbs work?
Very interesting thread! Thanks!
Posted by JimBoB (Member # 8454) on :
Lymetoo:
YOU keep missing the points of MY posts. I don't know HOW to word it any better, for people to understand WHAT I am saying and WHY!
I realize Lyme is dangerous to go UNTREATED, however, many of us have gone UNTREATED for years, correct?
A month or two seems to make little difference, UNLESS it is early Lyme, THEN it is super important to get it taken care of right away with abx. Since THEN the abx can do wonders to get RID of the Lyme Disease.
In later or what some call chronic Lyme, it is a different story. Abx, don't help nearly as much THEN, UNLESS you use herbs and/or other alternatives along WITH them too. That is common knowledge among the properly informed.
AND there are OTHER diseases and conditions that can be much more critical on a time basis to get at ASAP.
THEREFORE, back to my original post on this thread, I don't know WHY someone would treat for Lyme Disease, IF they DOUBT that it is it anyway. NOTICE, I did not say: IF they are not sure one way OR the other. There is a BIG difference there. Re-read it if you are having trouble comprehending that thought, okay?
Jim
Posted by JimBoB (Member # 8454) on :
I am wondering WHAT happened to Martha also.
Patti:
May I suggest you try a few capsules of Devils Claw, Cats Claw, (whole herb), Sarsaparilla and Andrographis (capsules, very bitter in tablet form), and Milk THistle. YOu could even throw in a little Resveratrol, (Hu Zhang).
See IF you don't feel much better after 10 to 14 days, or less. Don't take any abx during this time. IF you don't improve, you MAY NOT have Lyme, and you can keep searching. What have you got to lose? You have your life to gain, IF I am right in what I am thinking.
I have been off abx since Feb. 21st and improved to about 75%; but all of a sudden, today I am almost 100%.
WOW it feels good to feel good again.
Course I am on more than just those simple good herbs. BUT those are the ones that got me feeling about 90% after NOT being treated for 5.5 years, and no abx either. THEN I took the abx WITH the herbs, and got bad again.
NOW, my life is back almost like a miracle today, hope it keeps up. Life is good.
Jim Posted by pattilynn (Member # 8065) on :
JimBob,
I'll consider your suggestions. I have already considered the cats claw. I just started antibiotics a few days ago. So, if I see no changes, I may try your route.
Thanks,
Patti
Posted by martha2006 (Member # 8767) on :
Hi JimBob,
where can I buy those herbs you mentioned.? My appt in next week. I doubt I have lyme, but I will give a try ,if thats the problem. You felt well with these herbs? Did you see LLMD? Please reply,
Posted by AZURE WISH (Member # 804) on :
JimBoB (think I got ur name right apologize if I didn't) Lyme disease can cause alot of damage in a short time irregardless of the stage the lyme is in.
When I first started treatment I had had lyme symptoms for 13 years...
and antibotics did make a huge difference....
I was going down the tubes fast and the antibotics got me 90-95% better in 3 months...
if I had waited a 2-3 months this clearly would not be the case...
So you ask.... If you got so much better then... than why are you disabled from lyme now.....
Well, that is a very long story
containing a few ducks and a litany of complications...
but i have an awesome llmd now.
*******
I was tested for mycoplasma (sp?) I was lucky I didnt have it.
I had the test down a few years ago so i cant remember the lab that was used.
Don't forget lyme disease diagnosis can be made clinically
Best wishes Posted by mlkeen (Member # 1260) on :
If lyme decided to attack you heart and you have a heart attack, a month or two won't be important.
Many can survive for long periods without treatment. It is a new stress like accident or surgury or even moving that can bring on a rapid increase in existing or new symptoms.
If your immune system gets very suppressed, no anti-boodies will be made and none will be detected on a WB.
Posted by pattilynn (Member # 8065) on :
mlkeen,
That's what happened to me. I had surgery in August and it hit me 4 days after surgery like a mack truck. It's been unrelenting since.
Patti
Posted by JimBoB (Member # 8454) on :
Azure Wish:
I am not saying that abx don't help, they do. Okay.
Look at you, you had Lyme for 13 years. Geez, don't you consider THAT a long time?
I had it for only 5 months before I had it treated with Cipro for 24 days. It did wonders I was bad to about 95% or better after that stint.
BUT, unlike what my duck told me, it was NOT cured. I SLOWLY started to relapse, about 8 to 10 months down the road AFTER I had that Cipro.
Until 5.5 years later I had gotten so bad I thought I was not going to be alive now to write this. I kid you not. I was bad.
Well, he is a duck, so said I WAS cured and that this is just old symptoms returning. He doesn't believe any different than what the CDC recomends. And ALSO since he has been bitten twice and got Lyme twice, and "cured" it both times with 21 days of abx. BUT remember he IS a doctor and got it RIGHT away after being bit.
IT is STRONGLY recommended by any LLMD that I have seen worth his salt, that you should be taking time off after short stints of abx anyway, so a few weeks definitely will NOT hurt you. As a matter of fact IF you are taking the recommended herbs you will be benefitted.
There is absolutely NO doubt in my mind that the proper herbal protocol will be of great benefit to people taking the healing leap of faith from mainstream regimens to herbs and other supplements.
If you don't believe anything, believe this, they DO work, wonders. IF done right. DON'T just dabble, get serious with them.
Jim Posted by JimBoB (Member # 8454) on :
Martha2006:
No I did NOT see an LLMD. Not enough money for all that. It was THAT or healing. Not enough money for both. Had to sell an old car project just to get the Herbs and few abx.
I just had a useless duck.
So, I am self treating with help. Help from Stephen Buhners book "Healing Lyme", and others articles and even some on this list that are doing herbs too. But mostly a LOT of research. And then trying these things and seeing WHAT works good or not.
I DO know HOW I feel. And believe me it is hundreds of times better than I did last November 25th when I started these herbs.
Another thing I recommend highly is what Buhner also recommends in his book and that IS large doses of Vitamin C. BUT please don't ruin your guts with ascorbic acid in pill form. (Tablets). I was taking 1000mg a day for a few years and started one asperin a day too. By the time I started treating this Lyme with herbs, my guts were shot. Couldn't hardly stand the pain and nausea.
For the Vitamin C, I am now on about 3000 to 4000mg a day. BUT NO MORE tablets. ONLY C-Salts which you can buy from nutri.com. Excellent, excellent product. It has done wonders for my stomach pain. And I don't take Aspirin anymore.
AND yes, I feel very good, especially since I quit the abx on February 21st.
Hope this helps.
You can get herbs from Herbs-Wholesale.com, Vitacost.com, myvitanet.com and other places.
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