Well, I saw a Rheumy last Friday for the first time. We were going through my multitude of symptoms and she asked me if I had been dxd with anything. I said FMS/CFS and Reflux/GERD. My husband shouted out "and Chronic Lyme."
The Rheumy did not automatically reject the idea of Lyme but said to hold onto it until after she examined me.
Basically she said I have Fibromyalgia and then she said, "Your FMS could have been caused by Lyme which triggered an autoimmune response in your body that it is and will always be fighting."
She didn't reject the idea that I have had Lyme, but thinks I had it a long time ago and am still dealing with the aftermath. I think that sounds reasonable. I think the question is how to manage the autoimmune response going forward.
I just can't take abx so I have to focus on improving immune function instead. Does anyone else share this line of thinking? I know it isn't popular here, but I just wanted to see if anyone else has any thoughts along these lines.
Be kind...I'm not trying to dispute abx treatment for anyone else.
Posted by Kendrick (Member # 10990) on :
I thought there wasn't a test for Fibro? I thought it was a group of symptoms(syndrome), meaning that it's completely subjective and used when they have no idea what's wrong with you?
I'm not sure if I would want to pay a doctor for me to tell him I have certain symptoms and he turn around and say my problem is the same symptoms I just told him(fibro--group of symptoms). It's just repeating your own words.
Posted by Lymetoo (Member # 743) on :
I agree with Kendrick BIGtime. It's simply a constellation of symptoms. I was dxd with FM and was going DOWNHILL with a rheumy....many years later found out it was Lyme.
I only found that out because I MOVED out of state, away from the rheumy who was giving me steroids!
I'm all for building up the immune system, but it's not that easy to do when you have Lyme still seething in your body!
Why don't you use Rife?
I'm not sure I even believe in the autoimmune idea.
Posted by clairenotes (Member # 10392) on :
Lymetoo said:
"I'm all for building up the immune system, but it's not that easy to do when you have Lyme still seething in your body!"
Because isn't lyme, by its' very nature immuno-suppressive? If so, then it would seem important to target the microbes. Immunity should begin to go up as microbes go down, at least in theory.
Claire
[ 13. February 2007, 07:58 PM: Message edited by: clairenotes ]
Posted by TerryK (Member # 8552) on :
My understanding is that the autoimmune model comes from the assumption that persistent infection does not exist! Illogical assumption given that there is convincing evidence to prove otherwise. I would want to know if your doctor is familiar with the arguments and evidence of persistent infection before wasting a lot of time doing things that are not going to get you well.
I don't know why you can't take abx but I would consider the possibility that you may have a reaction to abx because you are loaded with infection. There are things you can do to help your body deal with abx and I would suggest that you might consider getting help with that from a LLNP.
I agree that it is important to get your immune system up and running but as tutu pointed out, this will be very difficult if you are full of infection. Almost nothing seems to work well until the infection is brought under some kind of control. Terry
Posted by yourtroubl (Member # 11087) on :
I am new here too. However, I was diagnosed with Fibromyalgia just because no other test was positive. Then came a doctor who tested me for Lyme and it was positive. Now mind you he wont treat me but he tested me and says I have. So I am still basically untreated.
I have not exercised in a long time, but I really think its key to being as strong as you can. You do need to eat good and get as much exercise and proper sleep as you are able to get. So yes building your immune system up is wise, but if you tested positive for "something" shouldnt it be treated before you are given a dianosis that is life long and not definitive.
Posted by sixgoofykids (Member # 11141) on :
I don't believe the antibodies can be from past infection and cause an autoimmune reaction. I know that is the more popular position by docs not treating Lyme.
The LLMD's who treat Lyme say it's a persistant infection.
I'm going with the LLMD's theory because they say they can make me feel better whereas the other docs say I need to learn to live with it. I HAVE to give the guy who says I'll feel better a chance!
BTW, I am feeling better on antibiotics, and I've only been taking them for about a month.
I think Terry had a good point ... I always had trouble with antibiotics, but looking back I think it had to do with the Lyme getting stirred up by them. I'm using abx to get the infection under control, AND building my immune system to keep it there.
Posted by vachick (Member # 8353) on :
First of all, I was on abx for over a year and they destroyed my stomach, gallbladder, liver and teeth. I do not feel any better from being on them, in fact I saw my body getting much worse as time went on.
I was positive for Lyme but the test showed that I was not active (I forget if that is IgG or IgM). My LLMD put me on tons of different abx, flagyl, etc. but I could not function for an entire year. I quit my job in hopes that abx would help, but they did not.
Now I am off of the abx and feeling much better. However, I still have some symptoms. I am back to work and trying to manage the best I can.
I know that FMS is a group of symptoms and the root cause is unknown. It could be Lyme-induced, it may not be. I do know that abx were wreaking havoc on my body and that I have to consider another way of healing. I cannot afford not to work or function.
A year was long enough to be on abx without progress. I thought you all could help with another suggestion, but I can see I was wrong.
I knew better than to post this.
Posted by 5dana8 (Member # 7935) on :
hi Vachick
Personally I think some of the problems with lyme and associated conditons is inflammation.
Here is a link on natural ways to reduce inflammation -Hope this helps:
Good luck...Please don't let your rheumy give you cortazonne(sp?) in any form. Really bad for lyme-even if it has gone dormant.
good luck on your journey to wellness Hugs & healing Dana
Posted by sixgoofykids (Member # 11141) on :
There are herbal protocols. Salt and vitamin C helps some people. So does samento. Healing Lyme is a book with natural protocols.
I'm sorry you feel that you were wrong for posting this ... I didn't see that anyone was unkind to you based on the information you provided. Everyone was just trying to help. We would have been a bigger help had you told us the whole story.
Posted by yourtroubl (Member # 11087) on :
I hope what I said was not offensive. I just want to have an illness that can be treated and think if a test is positive..treat it.
I dont want to have Lyme or Fibromyalgia. I have lost over a year of real life as well.
I think vitamins are great. I just want to give drugs a chance first. I guess its individual to what life experiences you have.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sixgoofykids: I'm sorry you feel that you were wrong for posting this ... I didn't see that anyone was unkind to you based on the information you provided. Everyone was just trying to help. We would have been a bigger help had you told us the whole story.
Vachick....in the end, it's your choice. We can't make the choice for you.
I will say, however, that it took an entire year of misery before I even BEGAN to feel better....and another year before I felt I was making some progress.
Check out dana's link above.
Posted by Lymetoo (Member # 743) on :
I think you're misunderstanding. I'm all about looking at all angles... it could be: 1) candida issues due to long term abx 2) maybe you need break for a while from abx(could be the abx itself making you sick), until you start getting symptoms again, which may never happen 3) it's okay to treat the symptoms while treating the problem. 4) heavy metal toxicity 5) POTS 6) co-infections not addressed 7) and so on.
I just don't personally like Fibro because 'what the hell is it'. I understand using it for disability purposes and so on, but not for getting better, because you can't cure a syndrome(group of symptoms). I'm happy for you going back to work, and hope it continues to work out. I've had problems with abx after only a few months. I'm beginning to wonder how long I can actually take it for.
But when I take breaks off the abx, I feel better than I did before starting... which means I'm getting better, in general.
I need to get back to work myself, and probably going to take very minimal doses to survive, and treat Lyme at the same time.
You may want to consider looking at some fibro websites(wish I had them now), where people showed several different things they did that cured their fibro(Lyme was one of them... another was changing amalgrams--is that how you spell it?). and treat the syptoms for a while to give yourself a break, but never give up.
Posted by Monica (Member # 224) on :
I am a person who went from bad to worse while on antibiotics.
The LLMD I was seeing kept telling me I was herxing. I went into his office using a cane and a year later I was in a wheelchair.
Since being off antibiotics for 6 1/2 months my health has stabilized. I am hopeful I will improve.
Antibiotics are not the be all and end all of treatment. I take natural supplements now.
You are right to take responsibility for your health. Doctors do not know everything.
Posted by TerryK (Member # 8552) on :
vachick, you were not wrong for posting your questions. Thanks for filling us in on some of your history so that we can hopefully make useful suggestions.
I'm sorry you had such a hard time on abx. If you are killing bugs, you generally need to do a lot more than just abx or whatever you are using to kill the bugs. You have to help your body remove the debri from dead bugs from your cells/tissues. You also may need to be treated for co-infections that need a different treatment than abx.
Were you on any therapy at the time you were taking abx to help you detox from all the toxins that were being created by killing all those bugs? Some think that certain types of toxins can be difficult for some people to excrete without help. If you happen to be one of those people, you won't see improvement until you get rid of the endotoxins/neurotoxins. They will keep circulating in your body, making you sick. Questran is sometimes used for this but there are other things you could use. A good LLMD (a member of ILADS) will usually know about and can help you with these issues. Are you absolutely sure you were seeing a real LLMD? Some say they are when they are not.
Even if your body can get rid of toxins, your body's ability to get rid of them can be taxed when it is being overwhelmed by too many toxins. This can make a person feel awful. If this is the case, you will likely feel better once you have been off abx and your body has had a chance to detox. Best to help your body detox while on abx (or whatever you are using to kill bugs) so you can continue therapy.
You may also have gotten a candida infection while taking abx. You need to be on hefty probiotics and prophylactic treatment for candida while on treatment and for a time after going off.
I'm using Questran and other things as well. My LLMD ran some tests and said that it appears that I have a lot of intracellular toxins. Apparently we are killing tons of bugs but I'm not able to get rid of all the toxins. I've been on some drainage remedies and they have made me quite ill with symptoms that are indicative of detoxification. I'm sure the toxins are trying to move out of my body.
Since I've been on abx, I've had numerous episodes of inflammation. Cracking, snapping bones, crunching neck, sore knee etc.. This happens because as you kill bugs in the tissues, the debri causes inflammation thus you need to remove the debri as you kill the bugs. Inflammation makes anyone feel bad plus it impedes healing. It helps to take some supplements to deal with inflammation while on abx.
Were you tested for co-infections, including viruses? If you have lyme, your immune system has been impaired and you have likely picked up other infections, even possibly parasites or maybe you have babesia. Those infections will not be helped with abx.
Some feel that people with lyme will not get rid of the infection until they are rid of heavy metals. There is some evidence that heavy metals make some bacteria abx resistant.
There are many issues to deal with when infected with lyme. My understanding is that there is no way to tell if you have a current infection or not based on whether you have a positive IgM or IgG. There are numerous links on this site in the newbie section. I would not give up without fully learning of all the issues. You can also search on here for more information about these things.
Please understand that I don't know your history. I don't know what your level of knowledge is regarding TBI's. I'm trying to help as best as I can. I am not a doctor, just a patient who is trying to get better myself. Terry
[ 13. February 2007, 05:43 PM: Message edited by: TerryK ]
Posted by Jellybelly (Member # 7142) on :
Vachick, let me ask you this. Did you have symptoms BEFORE using the ABX? If yes, are your symptoms better today then they were shen you were seeking help for Lyme? If yes, could the symptoms be better because of the ABX?
I never feel good on ABX. I never get to feeling any better WHEN I am on ABX. When I stop, I usually feel bad for weeks, BUT as the bad starts to slowly lift, I feel better. I usually feel better after the ABX, and after the recovery from the ABX. I feel better to a degree that is far better then before I ever started ABX.
Posted by bettyg (Member # 6147) on :
fyi, there IS a fibromyalgia test! i've had it done on me 3 times since 93 by 3 different docs: 2 different rheumatoligists & pain clinic dr!
they move every part of your body to certain degrees pressure! i have fibro in all 18 of 18 areas, and it hurt like hell having this pressure applied.
last time it was in short stay unit of hospital, and pain dr. did this on me before putting cortisone shot in the middle of my back! i helped out in pain.
the door was open, curtain was closed, and RN rushed in saying my screaming out in pain from his applying pressure, was SCARRING all the patients in their waiting cubicles! SO MUCH FOR FREE YELLING OUT IN PAIN!
i've been on abx for 20 months, 6 months of supplements, and nothing has worked to help me. this is the worst i have ever felt/reacted in 37 yrs. of CHRONIC LYME! Posted by lymeout (Member # 8045) on :
VaChick, I just sent you a personal message.
Posted by meg (Member # 22) on :
VaChick,
I'm not trying to be cruel, but I will be honest. I'm another one who doesn't believe in fibromyalgia. The pain is real, the name is off.
"Fibro" means muscle, "myalgia" means pain. Does that completely describe your symptoms?....if not, then I would dump the Fibromyalgia theory.
As far as treating lyme by helping the immune system....sure it helps, but it doesn't rid you of a bacterial infection. If that were the case, your immune system would have handled it in the beginning.
Think of a person with an acute infection, do they get better by fine tuning their immune system? Usually not, it takes treatment.
If you think you are still dealing with lyme and you're against abx, why not use the herbal approach?
How about getting some specific help here and re-run your prior lyme treatment before the group? This bunch knows their stuff and are more than willing to help!!
Posted by TerryK (Member # 8552) on :
quote: bettyg wrote: fyi, there IS a fibromyalgia test! i've had it done on me 3 times since 93 by 3 different docs: 2 different rheumatoligists & pain clinic dr!
The test you are referring to is a tender point test. It just means you have trigger points in the area's that they arbitrarily decided one must have in order to get a diagnosis! It is not what one would consider an objective test nor does it say anything about the *cause* of the trigger points. It was originally used to try to determine appropriate subjects for a specific study and unfortunately they adopted it for diagnostic purposes.
One can have fibromyalgia and not have all the tender points that are required to get the diagnosis. Fibromyalgia is a complex of symptoms. Lyme patients can have fibromyalgia or fibromyalgia could be caused by other things. Infection seems like a very likely cause for many people with fibromyalgia but apparently sleep apnea can also cause trigger points as can hypoglycemia and lots of other things.
Unfortunately, like you, I have tons of trigger points but the point is that this method of diagnosis covers muscles only as has already been mentioned. As many of us know, there are many many symptoms. A diagnosis of fibromyalgia really doesn't mean much unless someone figures out *why* you have the symptoms. Terry
Posted by JRWagner (Member # 3229) on :
First a big HI!!! to everyone.
Second: Everyone is right. What??? Yes...lyme and it's friends have many causes and effects.
One CAN have auto-immune caused by Lyme or MANY other microbes/viruses, etc.
I have had Lyme for 13 years and now have OLIGOCLONAL ANTIBODIES in my Spinal Fluid. What does this mean? These antibodies attach the Dendrites of the nerve, along with the Myelin Sheath covering the Axons. Sort of like an electrical wire losing it's protective plastic coating...not good.
Oh yes... have a VERY HIGH EBV IGG titer...but this is past, not present infection. EBV HAS been linked to MS. So, is it my Lyme that is causing my present symptoms, or is it MS?
I have had three Spinal Taps...one in 1995, one in 2000 and one in July 2005. ONLY the one from July 2005 showed these antibodies. Nothing else showed up in the previous taps.
So, what to do? All my blood tests are perfectly normal...in fact they are really good: Cholesterol is 160, and I am 58!
Yes my neck screams in pain, and my head feels like it will explode...sort of a perpetual hangover without the fun the night before.
Bummer man...
What do my LLMD's and Neurologists say?
Well, we just have no definitive answer for you.
Freakin' wonderful. Let's go have a party and jump off the Brooklyn Bridge while we are at it!
Stick in there everyone, TuTu got better, and so can we!!!
Peace, Love and Wellness, JRW
Posted by vachick (Member # 8353) on :
Thank you all for your responses. I do appreciate everything you are saying.
I was treated with Biaxin and Omnicef along with Flagyl. He even put me on Ketek for a while but I couldn't handle it so I went back to the Biaxin/Omnicef/GFlagyl combo. I was on these things for a year and just could not function.
I have to function and the idea that I would have to be on abx another year or two feeling like that just is not reasonable. I do have a lot of muscle issues...wekaness, fatigue, myoclonic jerking and numbness/pain. But I also have other symptoms.
I am pretty sure I have something on top of the FMS/Lyme; however, no one can find it yet.
Believe it or not, the only thing that has helped me has been low dose nortriptoline. That has helped my POTS and my stomach problems. The abx did not help me...maybe they did, but I just can't take another full year of literally not being able to do anything.
So, I am trying to find alternative methods to heal. If my immune system can fight off other things, I think it can fight this if it is strengthened enough.
I don't think the Rheum knows the origin of the FMS because it is likely impossible to pin point due to many potential causes. If I believe that I have persistent infection that can only be treated with abx, then I have no hope since that is not an option.
Posted by wrthster (Member # 11126) on :
Hi,
I am new to the board, prior I was diagnosed with FM/CFS and most recently Lyme by an LLMD. The symptoms in all of them are so similiar, it really difficult to determine because none of them how one conclusive diagnostic test. If you go to a Rheumatologist it will be CFS or FM, a LLMD it will be Lyme.
I have a lot of problems with Antibiotics as well. I don't know of any natural products that will do the trick. The only things I can think of that you could research is Hyperbaric Oxygen which we all know costs a fortune but it does work with the immune system and kills the Lyme. You could also look into intravenous Vitamin C. Don't know how that would work, but it is considered very safe. Best of luck!
Posted by clairenotes (Member # 10392) on :
Vachick -- I am sorry, too! I was not, in any way, trying to put down the idea you have about building your immune system up. It is definitely valid and necessary, in my opinion. I think I remember your juicing post where this subject was touched upon, i.e., whether juicing would be helpful or not in building immunity.
My only thought was that if you don't target the microbes somehow, you might not progress as much as you would like to. Also, I am just not sure about auto-immune illnesses either.
There are choices of abx remedies and non-abx remedies (some listed above), which I just assumed you already were aware of. I CANNOT take abx due to a previous illness, and have NEVER treated my LD with it. I DO feel I am progressing.
Of course there is plenty of hope!!! Please research non-abx treatments and ask plenty of questions. And of course, use whatever means necessary to support yourself throughout. LLND sounds like a great idea, too.
Claire
Not medical advice, just personal experience.
Posted by 5dana8 (Member # 7935) on :
Hi Vachick
I think it is really important in any disease to do any thing you can to boost your immune system. That being said-lyme is very good at hiding from the immune system. But I feel that maybe ones that aren't good at hiding from the immune system could be picked off by the immune system fighters.
Hope this helps and hope you can find a way to feel better soon blessings Dana
[ 13. February 2007, 10:49 PM: Message edited by: 5dana8 ]
Posted by karatelady (Member # 7854) on :
I am using the KMT-24 microcurrent machine which covers about every virus, bacteria (including lyme and coinfections), mobilizes heavy metals, parasites, fungi and molds.
I also have a steam tent with oxygen/ozone that helps tremendously with detoxing. I also take Mangosteen juice (Xango) as it is high in antioxidants.
I took abx for 6 months and just couldn't function and decided to try alternative. I feel this machine is helping me in place of abx.
If you do a search on GiGi or KMT-24, you will find lots of good information posted by our beloved GiGi. (She hasn't died although it feels like she has ~ she is well today from using this machine along with other natural protocols.)
Sandy
Posted by luvs2ride (Member # 8090) on :
Vachick,
Ding! Ding! Ding! Ding!
Look at me. I'm working with doctors who believe I can beat RA and do it best without abx. I initially was diagnosed by 2 LLMDs as having lyme. Their diagnosis though is strictly clinical as the Igenex test could only confirm I have had lyme. It could not confirm current active lyme. Clinical diagnosis can be wrong. After all, lyme and yeast share the exact same symptoms. In fact, so does RA!
I am thriving with the doctors who are helping me build up my body and bring it back to homeostatis. (balance)
Too many abx for too long simply cannot be a good thing. Especially if you don't aggressively treat the side effects of abx, like yeast.
Systemic yeast has the exact same symptoms as lyme. So if yeast is your problem, abx will make it worse.
You are ready to give up abx for at least awhile and rebuild your body. GREAT IDEA!!!!
You just need a good doctor to help you do this. I can recommend two.
PM me if you would like their names.
Luvs
Posted by Lisianthus (Member # 6631) on :
Just a suggestion vachick.....
You may want to ask your doc to only put you on ONE abx like Minocycline (low dose) and see how you feel. I have been on abx for 2 years but I could only take low doses(like starting out at 50mg a week). I have gotten alot better on these low doses.
But I do know that when I go OFF abx (I did this during Christmas) I go down hill!
But people have to make their own choices in life, and you will have to find out what works for you.
Good luck, Lisi
Posted by sixgoofykids (Member # 11141) on :
Vachick, there are natural routes you can try ... I don't know if you were on Flagyl the whole year, but I've heard from non-Lyme friends who were on Flagyl that it was miserable for them. Keeping that in mind, maybe something else would be better for you.
I was using the salt/vitamin C treatment while waiting for my LLMD appt, and it was definately doing something. It made me feel bad all the time though like antibiotics did for you.
The candida comments are true, too. My doc has me on Theralac, another probiotic, and Nystatin to avoid the yeast. I'm also on a lot of supplements to help detox.
Posted by david1097 (Member # 3662) on :
From what I make of what your Dr said about autoimmunue, this is EXACTLY what steere et/al are saying is causing "post Lyme Sydrome" FOR EVERY ONE. I will bet that at least some of the people with "post Lyme" have this problem.
What they do not say, is that that not all people with post Lyme fall into this auto imunune category. In fact they go out of their way to try to disregard anyone with objective signs of persistent infection to prove that their concept is the only correct one. By ANY standard, scientific or otherwise, the Steere hypothsis of this autoimunue cause beng all encompasing is clearly wrong. I am pretty sure it is sometimes a cause but not in every case.
The question then comes up as to how does one know if it is auto immune post Lyme or persistent infection. In my mind the answer is simple, take steriods. If the problem goes away then it is auto immune, If it comes back but even worse then it is infection... but NO, they don't recommend that this be done, instead they say to comntrol the flare ups with NSAID??? I guess they think that the use of steriods will puncture their hypothesis if it makes things worse after a course of the drug...
This who auto immunue thing started when people had bad reacations to the Lymerix vacine, a vacine made from proteins that are no way even similar to a living organism (this impossible to cause an infection) The problems the people suffered where permanent so they looked for an auto immune trigger and found a specific gene sequence that predisposed the person to the reaction.
I would ask the rumy to veryify if you have the gene sequence that steere says is the trigger for post lyme. I don't know who does this test but at least you would know if you are a candidate for an autoimune problem. If you are not then you one can ask unbelieving Dr's to explain how this is possible and why not try the "alternate" (ilads) approach. If you do have the specific gene sequence then maybe auto immunity is the problem and you can look for relief via different types of drugs, perhaps trying steriods to see what happens. At least that way you would know.
I read a veterinary paper some time ago about the use of steriods in dogs that have been treated with antibiotics for Lyme. I claimed that with the use of steriods, the bacteria returned to the blood. I wish I could find this paper again but I have lost it. If anyone remembers seeing it please let me know where to find it again.
I forgot... On the trigger point thing, do a search on late stage syphilis diagnosis... I think you will find that there are specific "trigger" points that where considered as chracteristic of syphilis, I think one of them was the lower shin area.
Thats my .02...
Posted by Annxyz (Member # 9097) on :
I strongly encourage you to look into alternative therapies that have worked for many others who have posted here : rife therapy , the salt/ VIT C protocol, and the Buhner protocol as described in " healing Lyme " ( Stephen Buhner ) .
The fact that the ABX were so troublesome indicates you do have an intracellular bacteria - probably lyme. WHO CARES IF EVERYONE BELIEVES IN THIS CRAZY DISEASE? I AM THE ONE WHO FEELS LIKE HELL WHEN THE BACTERIA DIES OFF . I KNOW IT IS REAL.
I also hate ABX , and will say that it is terribly discouraging to take the meds a year and still feel like poop . I am with you ! I also am fed up with the meds ( and the reality that many here have had years of ABX and are still struggling ) and trying alternatives that have really worked to help people get their lives back.
My advice is to keep killing the bacteria, even if you do not choose to use ABX . If you do not persist in killing the spirochetes , then you will lose ground , and who wants to have a year of suffering that YIELDS NOTHING ?
Others here do get better and they are gracious to share their progress and the tools they used . Hang in there !
Posted by Lisianthus (Member # 6631) on :
DITTOS on everything CAVE said!!!!!
Posted by docjen (Member # 7510) on :
Vachick...thanks for your note. I think it is really important to be able to share your thoughts and experiences on this board, and it is also important to keep an open mind about alternative diagnoses. In medicine, you always need to keep in mind the differential diagnosis!
Like many of us here, I was diagnosed with fibro years ago and treated for a host of related symptoms...for many years. I have been in lyme treatment for 2 years, and am realistic enough to accept that this treatment might not be the end of this journey, and I may be back in a doc's office hearing "fibromyalgia" again soon.
Thanks for sharing despite the strong potential for flames. And if you don't want to take abx, there is nothing wrong with that.
Posted by fancykat (Member # 7857) on :
Vachick, I wholeheartedly agree with the line of thinking you posted. I was on abx and a boatload of herbs for 2 years. And I got progressively worse. It got to a point where everything could just not be dismissed as a herx.
I believe that just as it is possible to have Lyme and not test positive, it is also possible to be misdiagnosed with Lyme, or have concurrent conditions, or a completely different condition altogether.
At this point I just want to feel better. I don't care what it is called. I am keeping an open mind, and as long as my health is improving, that is all that matters to me now. Whatever works, regardless of the label and method is the key. Live and let live.
Posted by mjo (Member # 7876) on :
Shoot me down if you want to but I believe many LLMDs treat too agressively making people so sick they cannot function, like vachick. I don't do the Marshall protocol but believe there is reason to use small doses of antibiotics and continue the course of treatment for as long as it takes. Most of us are in too much of a hurry.
Think of it this way: If you have an operation and you are in lots of pain afterwards and you refuse the pain meds, your healing process will take much longer. That's a given. In the case of Lyme and co-infections stronger pain (herxes) aren't going to get you well though many say you can't get well without herxing. I believe you need to see-saw between what you can do and what you can't. When abx get too tough, you back off, give your body a rest, and restart slowly again. If the med is too awful even at low doses, you give the body a rest and then use other abx, starting slowly again.
One way to know if your LLMD is going the agressive route is to understand what each of the meds you are taking is for. Some prescribe mind meds to manage symptoms generated by the herxes, when you didn't need the mind meds before you started herxing. This isn't just in Lyme treatment, but a perversion of "healing" Medicine adopted via Big Pharma's full court press on doctors.
There are various LLMD avenues of treating Lyme and co-infections; patients should choose whatever route feels right. Healing Lyme is an excellent book and may offer more support for you vachick, especially since you have been able to return to work. Like others, I caution you to stay away from the Fibro diagnosis; it is a non-disease with no known etiology. You already have your etiology. The IgM response is key.
Posted by Jellybelly (Member # 7142) on :
I would also say that I have to agree with Cave on this one:
quote:Fibromyalgia is a symptom NOT a disease.
My family has quite a bit of experience with the fibromyalgia experience. My mom was the first to be diagnosed with FM. Then me, but I looked the sickest. Then my dad started having symptoms of FM, sounded just like my mom and me.
Within a year or so, my dad was given a diagnosis of Lupus. My mom and I were still just FM though having been tested for everything under the sun. One time my mom was with my dad at a duck appt. and said to the duck that my dads symptoms sounded so similar to her symptoms of FM.
He looked very disgusted at her and said "He DOES NOT have FM. He is VERY sick with Lupus." It was as if she wasn't really sick at all.
A couple of years later, she was given a new diagnosis of MS. Me,still just FM and now my daughter was showing signs of FM. A few years later my son startes getting sick, but he was manifesting more like Chronic Fatigue in that he did not have the wide spread pain and had massive swollen glands with crushing fatigue which the rest of us had as well.
So my mom and dad had the FM symptoms and were later given diagnosis of specific autoimmune disorders.
Fast forward many years. My dad dies at the age of 67 with complecations of congestive heart failure and systemic staph.
A short bit later, I was found to have Lyme, had my daughter tested and she was CDC positive for Lyme. Convinced my mom to get tested and she eventually tested CDC positive......so she never had MS???
In my history, the FM was clearly just a symptom of something else happening.
As far as autoimmunity goes.....I don't believe that the immune system just gets stupid at one point. In the definition of autoimmunity it is felt that apparently for no reason the immune system starts attacking self.
I don't think it is stupidly striking at us for no reason.... IT KNOWS SOMETHING IS THERE Is it having a hard time finding it, you bet. Why? because as we know it is usually inside of other healthy looking cells. To get at what does not belong, the immune system must go through healthy tissue. It's then attacking us when it is really trying to get rid of the foreign pathogen.
They are beginning to find foreign pathogens at the root of all kinds of illnesses and autoimmunity is one where they are making quite a bit of progress.
Posted by Nebula2005 (Member # 8244) on :
Fibromyalgia isn't an autoimmune condition. There are no specific antibodies that cause the widespread pain, stiffness, fatigue, etc., as there is in Lupus, Rheumatoid Arthritis, Polymyositis, etc., which have accepted diagnostic serum/tissue/organ changes in addition to symptoms leading to a diagnosis. (The diagnosis can still be wrong).
It doesn't mean Fibromyalgia isn't a "real thing" it's just still such a mystery. It's a convenient name for what happens when you get demonstrated pain from the location of muscle, tendon and ligament attachments, thus the test for the tender spots.
The problem is now that doctors have a name for it, they may stop trying to find why it's happened to the patient.
I can certainly understand why you don't want to face taking antibiotics again. It's not the year's time that's the problem, it's the every minute, every hour of every day that you feel so bad. And nothing helps make you feel better.
I can't come close to the doses that the ILADS says are necessary to get well. I'm not a weenie, but the herxes are intolerable.
Everyone is different. Keep on keepin' on, whatever you decide to try!
Posted by Greatcod (Member # 7002) on :
I had not had much fibro for a couple of months, and got a flu shot. Next day, fibro all over. With me, that includes my facial muscles. In any case, I believe that my fibro is a cytokine response to infection. IMO antbiotics are a necessary part of Lyme treatment.
Posted by winsomme (Member # 5623) on :
one possibilty is what Dr K in CT does which is use a combo of abx and IVIG.
the IVIG i think is used to try and correct the immune dysfunction that may be happening in chronic lyme.
i think more and more LLMDs are using IVIG to try and reset the immune system, so it might be worth looking into.
overall, it may not really be an either/or situation. it may be a combo of immune and chronic infection.
also over the long term it seems that the intracellular nature of these bugs is also disturbing the energy production/ mitochodrial function.
in some people, just attacking the bacteria does the trick and the body is able to reset itself with the bacteria in check. but others may require more - ie IVIG or other nutritional treatments to address deficiencies developed over the many years of being sick.
i really like the program put together by Dr Garth Nicolson. his treatments are geared toward mycoplasma treatment, but it seems to me that his other rec's could also be implemented to lyme.
look at the treatment section. lots of good info there.
finally, i am on another message where there is alot of talk about a DR in either Oregon or Washington that is using Dopamine Agonists to counteract the pain aspect of these diseases we have. the DRs name is Andrew Holman, and here is one link but there is a ton of info out there:
he is doing studies with both Mirapex and Requip. i know that i have read some side effect problems with Mirapex, so Requip might have a better safety profile, i really don't know.
but this DR is prescribing the meds in a different way. he is using very high doses given in one dose at bedtime.
if you are interested i would definitely ask your DR to consult with this DR because the research is very new.
personally, i might try some other things first, but i also know that sometimes these symptoms get you to a point where you just want to try something that might have an immediate impact.
there are a few people using these meds who give first hand feedback.
and also check out the Dr Nicolson stuff becasue it is really comprehensive.
thanks bill
Posted by kelmo (Member # 8797) on :
My contact with Garth Nicholson, is what led my daughter to finding an LLMD who said her fibro/CFS was caused by bartonella. She also had mycoplasma pneumonia and EBV/Parvovirus.
I feel like I jump up and down when someone tells me they have fibromyalgia and won't HEAR of perhaps it being caused by an organism. They believe it's an end to itself. Posted by on :
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