Coming To The Harsh Conclusion It's Most Likely Lyme...

[castor]

I don't know if this is the place to post this, but this is where the lyme thread is and was pointed to it a bit back when I first posted here. It's been a while since I have posted but since my last post I've fallen off the radar for a while.... Been somewhat incapacitated in that time and have gone through many tests... all showing I am supposedly perfectly healthy, except for one thing, a somewhat major imbalance of good/bad bacteria in my guts and was told to start taking probiotics immediately. That seemed to be doing a lot of good for a short while, less bad days and better good days and my weight leveled off, but just last night into this morning I had another horrible flare up of symptoms though this time did not include diarrea though I am feeling worse than ever.... Had a bad episode of convulsions in my right leg in the middle of the night, which they keep trying to tell me is RLS though they have never seen it happen.... Uh huh, sure, my leg jerking around sometimes pretty hard is just RLS. *sigh*

I've been reading what I can on lyme, but I have problems with reading anymore, have for a while, which, in the reading I've done seems to be a very common thing. A lot of peoples stories I feel like I was reading about myself at times. I know what I need to do, find an LLMD, but my situation is a little more complex. I am on Indiana Medicaid disability, no income, no savings, no assets, and just got my bankruptcy discharge letter yesterday (bankruptcy was because of mostly past medical debt as well as some bad money management during an 'epidose') I've been turned down for SSI disability twice as I'm in effect too smart to be mentally disabled and my physical problems have no medical backing. I'm soon to be homeless, pretty much as soon as they post the foreclosure on the house I have been living in temporarily which could be any day now. My parents aren't uh... exactly supportive and recently said instead of moving in with them if I have to, it would probably be best if I found a homeless shelter. I've last all friends from me just being... me, which at times can be very irritable and irrational, and to most, irritating. Soo... I have nobody, nothing, no car either, and I'm too sick to work but everybody just thinks I want attention and for everybody else to take care of me so I can have it easy. -- Those are close to actual words I hear a lot from family and such.

I'm realizing it would almost be better if I had cancer at this point as it's something people and doctors actually take serious. This is my dilemma, I have the Medicaid, but with how there is the controversy with treating lyme, is that going to do me a lot of good? I can't pay for any treatment out of pocket as I have zero dollars and don't see any real income in my near future and I don't really see myself traveling to see a good LLMD. I want to get the Igex... something lab test I read about, but I don't know how that is going to happen if medicaid refuses to pay for it. It's pretty much, I either get all treatment through medicaid for this, or I won't be able to get any as I am not going to go severely into medical debt again.

What to do.

I am pretty sure it is lyme, but I don't even trust myself anymore. I've been accused so many times of trying to self diagnose and to just let the doctors do what they do, if I try and tell anybody what I think is wrong, they just ask if I am still taking my meds (psychotropic). I don't know if I am sane anymore to tell the truth.

I am going to try and write down some of my story over the next few days on here, and hopefully somebody will be able to tell from it if I should seriously seek out treatment for Lyme, or if I'm just jumping to conclusions again. I also want to get it written down so I have it as reference later as I tend to forget things when in the doctors office.

I just don't know what to do anymore, I feel like I lost the fight a while ago.

[AliB]

Could certainly be due to rogue bacteria in your gut - whether it is Lyme is obviously an unknown entity, but as that is caused by a bacteria then it all amounts pretty much to the same thing really. The type of symptoms we get pretty much seems to depend on the type of bacteria that is in our guts.

I am pretty sure I don't have Lyme, but the symptoms I have suffered with for years, particularly the fatigue and weight issues are definitely down to bacteria and yeasts - candida, etc.

I know how frustrating it is when you are sick but have no definitive diagnosis. Nobody wants to know and the doctors just look at you as if you are mad. One, years ago more or less told me that there was nothing wrong with me, I was just idle! Thanks very much. Since then I have preferred to go my own way as I know I won't be getting any help from that direction.

Do you read other threads? You can pick up a lot of good and interesting information from them. My two threads are on this section - Gut Dysbiosis is one, and the Specific Carbohydrate Diet is another. Both contain a lot of interesting info and are worth reading. I am sure the Lyme one may help too, if nothing else to give you more pointers to whether it really is Lyme you are dealing with.

You are in a difficult and unique situation. Sadly, sometimes, the only people we can really rely on is ourselves so the way to get power is knowledge. The more you can find out about your health issues the stronger your 'defense'.

I know that I will not get the help I need from the Medical Profession - I've tried but they are useless, so I am dealing with it myself as I do not have the resources to find 'alternative' support. I know the SCDiet works as, although it is early days I am slowly getting better - the only thing I am battling with now is my own will-power!

It is one route to health that is very successful both for physical problems, and mental - even people with Bipolar and Schizophrenia have recovered on the diet. Just out of interest I realised some time ago that my RLS is connected to my digestive tract - when I was eating gluten it was awful. Since going gluten and dairy-free and subsequently adopting the SCD I rarely suffer with it anymore (unless I eat foods that I shouldn't!)

As I live in the UK I cannot give any advice - our system works differently to yours, but I hope things work out for you ok. Wherever you are, there will always be others here to give you moral support and shared experiences and useful information, and having that resource can often be half the battle.

[castor]

Thank you very much AliB for your reply, in making this post I am looking for direction, but also just... some kind of support.. I've been going this alone for so long and it's just now everybody is almost pissed at me that I'm still sick (or to them, so I say I am).

I just had another argument with my father, that turned into a yelling match again over if I am actually sick or if I'm just faking it so I can be 'lazy'. I can't keep arguing about this... I need somebody here to believe me, but the doctors saying they can't find anything wrong isn't helping my case.

I am coming the the conclusion though that it is lyme from as much reading as I've been able to do over the last week (I have to take breaks and some days I can read something 5 times and still not remember what I just read, doing better today though) and the big red flag is I have 52 of the symptoms on the list, which also discludes a couple I'm not sure about, though I left a few I question a little too.

Most all of these are current (and when I brought up lyme to my doctor he says I don't have anything that would point to LD)

Rashes on other parts of your body ??

Raised rash, disappearing and recurring ?? - I get what have been called boils on my back

Headache, mild or severe, Seizures

Twitching of facial or other muscles

Stiff or painful neck

Jaw pain or stiffness

Dental problems (unexplained)

Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Double or blurry vision

Pain in eyes, or swelling around eyes

Oversensitivity to light

Decreased hearing in one or both ears, plugged ears

Pain in ears, oversensitivity to sounds

Diarrhea

Constipation

Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Bone pain, joint pain or swelling, carpal tunnel syndrome

Stiffness of joints, back, neck, tennis elbow

Muscle pain or cramps, (Fibromyalgia)

Shortness of breath, can't get full/satisfying breath, cough

Chest pain or rib soreness

Night sweats or unexplained chills

Heart palpitations or extra beats --- this is a maybe

Tremors or unexplained shaking

Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis

Numbness in body, tingling, pinpricks

Poor balance, dizziness, difficulty walking

Increased motion sickness

Lightheadedness, wooziness

Mood swings, irritability, bi-polar disorder

Unusual depression

Disorientation (getting or feeling lost)

Feeling as if you are losing your mind

Over-emotional reactions, crying easily

Too much sleep, or insomnia

Difficulty falling or staying asleep

Panic attacks, anxiety

Memory loss (short or long term)

Confusion, difficulty in thinking

Difficulty with concentration or reading

Speech difficulty (slurred or slow) - only sometimes

Stammering speech

Unexplained weight gain, loss

Extreme fatigue

Swollen glands/lymph nodes

Unexplained fevers (high or low grade)

Symptoms seem to change, come and go

Pain migrates (moves) to different body parts

Early on, experienced a "flu-like" illness, after which you have not since felt well - not 100% sure

Low body temperature

Allergies/Chemical sensitivities ---- this is getting really bad lately

Increased effect from alcohol and possible worse hangover

I'll post more of things going on currently a little later today, my minds clouding up now. Celiac was for the most part ruled out, though could have a bit of an intolerance, but gluten free for two weeks didn't do anything. There's been no rhyme or reason of what I eat and how I feel, the same exact thing will be fine one day, then the next it doesn't seem to agree with me, but I can't get people away from just focusing on gastrointestinal problems, the other symptoms I try and explain and they just seem to ignore me. The gastro stuff really isn't nearly as bad as the other things I'm feeling.

Going to rest for a bit

[mslee]

Hey Castor!

I'm so sorry you are having such rough luck! That is terrible about your home, and that your family are less than supportive. Half of mine are, the other half think I'm lazy and weak. blah!

First if you have at least a couple dx from the past fibro/depression/neuro apply again for SSI. List everything that debilitates you and the impact it has had on your life. This thread may have some helpful info Open Original Shared Link

It is common to be denied a couple times before being approved. Although if approved they make you wait 18 months before medicare kicks in. But it may give you some more income.

LLMD usually will not take insurance anyways.

It's a messed up situation! no way around it. I was in a similar one though not quite as bad but I was homeless for a while. I was denied health care at the arthritis foundation because I was not dying of lupus but was also denied medical treatment at the local clinic because they did not know how to treat lupus, "it was too serious"

I worked my butt off paying for my own college edu and working 2 jobs, however lost my insurance due to a pre-existing condition. It all went downhill from there.

You may look into Dr's doing research sometimes they will monitor you in exchange for using your medical info for research, although with lyme that may be difficult to find

Maybe consider moving to an area with better medical care/drs??? Or lower cost of living??

That helped me, although I am now buried in debt. But moving did help tremendously in my day to day existence.

I hope someone with Lyme exp will have some helpful info for you!

Just know you are not alone, there are others going though all this. And we can be there for support!

Take care of yourself the best you are able, if you are gluten intolerant and broke cheap processed food will make you sicker.

Will be thinking of you! Let's see if I can come up with any HELPFUL info

will be in touch

hang in there!!!!

[AliB]

Thank you very much AliB for your reply, in making this post I am looking for direction, but also just... some kind of support.. I've been going this alone for so long and it's just now everybody is almost pissed at me that I'm still sick (or to them, so I say I am).

I just had another argument with my father, that turned into a yelling match again over if I am actually sick or if I'm just faking it so I can be 'lazy'. I can't keep arguing about this... I need somebody here to believe me, but the doctors saying they can't find anything wrong isn't helping my case.

I am coming the the conclusion though that it is lyme from as much reading as I've been able to do over the last week (I have to take breaks and some days I can read something 5 times and still not remember what I just read, doing better today though) and the big red flag is I have 52 of the symptoms on the list, which also discludes a couple I'm not sure about, though I left a few I question a little too.

Most all of these are current (and when I brought up lyme to my doctor he says I don't have anything that would point to LD)

Rashes on other parts of your body ??

Raised rash, disappearing and recurring ?? - I get what have been called boils on my back

Headache, mild or severe, Seizures

Twitching of facial or other muscles

Stiff or painful neck

Jaw pain or stiffness

Dental problems (unexplained)

Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Double or blurry vision

Pain in eyes, or swelling around eyes

Oversensitivity to light

Decreased hearing in one or both ears, plugged ears

Pain in ears, oversensitivity to sounds

Diarrhea

Constipation

Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Bone pain, joint pain or swelling, carpal tunnel syndrome

Stiffness of joints, back, neck, tennis elbow

Muscle pain or cramps, (Fibromyalgia)

Shortness of breath, can't get full/satisfying breath, cough

Chest pain or rib soreness

Night sweats or unexplained chills

Heart palpitations or extra beats --- this is a maybe

Tremors or unexplained shaking

Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis

Numbness in body, tingling, pinpricks

Poor balance, dizziness, difficulty walking

Increased motion sickness

Lightheadedness, wooziness

Mood swings, irritability, bi-polar disorder

Unusual depression

Disorientation (getting or feeling lost)

Feeling as if you are losing your mind

Over-emotional reactions, crying easily

Too much sleep, or insomnia

Difficulty falling or staying asleep

Panic attacks, anxiety

Memory loss (short or long term)

Confusion, difficulty in thinking

Difficulty with concentration or reading

Speech difficulty (slurred or slow) - only sometimes

Stammering speech

Unexplained weight gain, loss

Extreme fatigue

Swollen glands/lymph nodes

Unexplained fevers (high or low grade)

Symptoms seem to change, come and go

Pain migrates (moves) to different body parts

Early on, experienced a "flu-like" illness, after which you have not since felt well - not 100% sure

Low body temperature

Allergies/Chemical sensitivities ---- this is getting really bad lately

Increased effect from alcohol and possible worse hangover

I'll post more of things going on currently a little later today, my minds clouding up now. Celiac was for the most part ruled out, though could have a bit of an intolerance, but gluten free for two weeks didn't do anything. There's been no rhyme or reason of what I eat and how I feel, the same exact thing will be fine one day, then the next it doesn't seem to agree with me, but I can't get people away from just focusing on gastrointestinal problems, the other symptoms I try and explain and they just seem to ignore me. The gastro stuff really isn't nearly as bad as the other things I'm feeling.

Going to rest for a bit

Hmm. well, where to start...............as you are well aware, unless doctors have a definitive series of symptoms it is impossible for them to make a diagnosis. The problem there is that we are all unique. With certain diseases like, say, diabetes, the symptoms are easily pinpointed and most, if not all presenting their doctor with those symptoms will get a diagnosis from fairly straightforward testing procedures.

Sadly, there is a proportion of the population who fall into a hole. The general attitude is that 'because we can't diagnose it, it doesn't exist and you can't be sick', which is an absolute load of.........

I would say that if you presented half the population with the list of symptoms, most of them would have at least one or more. We are very imperfect people and along with that comes problems. I also would say that I suffer with probably 20 or so of the symptoms on your list. My husband who has Fibromyalgia suffers from at least 20.

I have to say that when I went gluten-free, he decided to join me (he hates being left out!), and although it took a little while for it to settle, he has been better off the gluten. He doesn't get the flare-ups nearly so often, he is happier in himself and the brain-fog is a thing of the past! I am sure that if I could get him to drop dairy and follow the SCD with me he could be even better.

Fibromyalgia certainly comes with a whole array of different symptoms and whilst some are constant like the joint pain and brain fog, others also differ between sufferers. Is FM recognised as a legitimate illness in the States?

Whilst I originally thought that my health issues were down to Celiac disease I now do not believe that. Whilst I am gluten-intolerant, after 9 months gluten-free I have had enough exposure in recent times and have not reacted, well at least not severely enough to be recognisable.

I now think that most, if not all of my health issues are down to rogue bacteria and/or parasites and a very unbalanced gut flora and the toxins produced by such. Those toxins can affect any part of the body. Have you ever had Candida or yeast infestations? Even so-called 'normal' issues like Athlete's foot, dandruff and thrush can indicate systemic Candida or other yeast-based bacterial infestation throughout the body.

Some bacteria are avid consumers of the nutrients we need. They can cause all kinds of deficiencies - anemia, B12, C, D, well, anything. Yes, malabsorption can be caused through gut damage but I believe it can also be caused by certain bacterial consumption. Not only do they chomp their way through our essential nutrients they then reward us with the toxic by-products of it.

I have noticed in the past that when I have tried taking supplements, maybe the next day or two I get a sudden burst of energy - like the nutrients are getting through, then just as suddenly I am back down to 'yuk' again. Based on research which has suggested that taking nutrients just feeds the bacteria that consumes them I suspect that whilst initially some gets through, within a couple days the bacteria has increased enough to take it back from me! Little beggars.

The SCD removes most carbs and sugar. As the bacteria relies on that as its main food, by limiting it we cut off their food source. They then should die back and be a lot less problematic. Certainly if gas and bloating is a problem you can bet your bottom dollar that bacterial activity is rife.

It does seem that a lot of your issues may be due to malabsorption and the gut issues do suggest that you are struggling with little beasties. This is very 'unchartered territory' and little is known about what effect bacteria has - I do believe that as time goes on more will be learned and understood, but that doesn't help us much now.

My diabetic doc and I, just today, have decided to part company as we have conflicting opinions on my healthcare. He, like most doctors, has no concept of gut dysbiosis or bacterial infestations and I do not wish to take any more drugs which is the only thing he can offer (and which, in my opinion I don't need anyway!). It was a drug he prescribed for me (that I should never have been given as I was already on insulin) that got me into this mess in the first place, so I'm not sorry to say goodbye. I do not have any faith in him and he knows it. I know that he doesn't know everything, and he knows I know it!

If anyone has found a good doctor they have found a rare thing.

[Rachel--24]

I am going to try and write down some of my story over the next few days on here, and hopefully somebody will be able to tell from it if I should seriously seek out treatment for Lyme, or if I'm just jumping to conclusions again. I also want to get it written down so I have it as reference later as I tend to forget things when in the doctors office.

I would be interested in reading your story when you have time to post it. You can also post in the Lyme thread (Leaky gut Forum) since there are several people there who have experience.

Right now....based on your symptom list...I would say that you should ABSOLUTELY be tested for Lyme. I dont think you are jumping to conclusions.....this is something that should be ruled out any time that there are unexplained symptoms. Lyme is very prevelant (moreso than most people would imagine) and in my experience it is one of the primary underlying problems in people with chronic illness.

Chronic Lyme is a multifactorial disease....so its never just about having Lyme. There are also co-infections, heavy metals, dysbiosis, sometimes food intolerance, sometimes chemical sensitivity, yeast/fungal issues, parasites, etc. Due to the nature of the disease there is inevitably impaired detoxification, increased toxicity and additional chronic infections.

In my opinion your symptoms are indicative of toxicity....and it seems that...more often than not Lyme is playing a role with these types of chronic symptoms.

Definately look at the Lyme thread when you have time. I do hope that you can find a way to be properly tested and evaluated for Lyme. Unfortunately you wont get very far with testing/treatment without an LLMD.....its pretty much a necessity since it is a complicated disease and requires someone with alot of experience and knowledge.

For now if you can get one of your regular doctors to sign for the IgeneX western blots....at least you can get the tests done....which is the first step.

Good luck in figuring this out.

[castor]

meant to write more yesterday but this flare up has been pretty bad though but am feeling on the up today, again seemingly for no reason at all as I go up and down. Stress seems to be my catalyst though, it was an, I guess tragic (to me at the time) occurrence in my life 9 years ago after which I've never really recovered, mentally or physically.

I will write more soon, thank you for the responses - and give more specific replies, but right now I am still pretty tired.

[land-turtle]

I know what you are going through....sort of...we are not in bankruptcy yet...but considering how the economy is going we may all end up like this. Well on a more positive note, I will tell you what helped me the most. Well if you can find a doctor willing to try you on doxycycline then go for it. I was on doxycycline for 6 months went into remission with my arthritis, muscle spasms, etc...people get different symptoms from lyme. But then I became allergic to all of the antibiotics INCLUDING all the antiinflamatories, gesh, well then I was forced to find a 'natural' remedy. I started with cats claw, kudzu, and turmeric tinctures, but you can find the pills at a health store, but I will cut to the chase, the thing that has helped me the most is hemp seed oil. I take it 2 times a day because I only eat 2 times a day. Oh, and the most important thing, you can't eat sugar, extremely low on carbs if at all, and I don't eat anything that is not a whole product, no preservatives (allergic) and well there's only about 20 things on my shopping list usually. I can't even eat milk products, so pretty much not much. LOL But hopefully you can find the hemp oil somewhere, I get mine at the Drug Emporium but they have all but shut down across the country. The oil was 10 dollars and it lasts me about a month. Not bad considering everything I have tried so far. Look on youtube there is a video about it, it's not the one that has THC in it, it won't make you high, but because of the genetic code or something if you have a drug test I think it shows up, you may want to think of that. It's like poppy seeds show up like cocaine, but anyway, the video on youtube is a lecture from a doctor and she outlines how beneficial hemp seed oil is compared to flax or fish, one thing that convinced me to try it was hemp has antiinflammatory properties and antifungal properties. Try to cheer up though, easier said than done, been there where you are, fought and fought for a diagnosis, never succeeded because I am in Texas where supposedly there is no lyme. Ha! Well you may never get a diagnosis and if you do, it will be very expensive. The natural cures are better anyway, if you can get a healthy body it can fight off the lyme. Remember they are researching the fact that there are a lot of park rangers who have lyme but never get sick from it, like being a carrier or something. So just concentrate on getting healthy, warning, may take a while but you will get there. Take care, keep posting, and God bless you.

[nora-n]

Wow heavy story.

Anyone know what igenex tests actually cost?

is it jut to oerder them and go to the local doctor? What would that cost?

(I am in Europe)

I have lived in a car myself....and battled doctors with thyroid disease and they denied it because of the blood tests. I was not well for years becasue of that. My health problems started with mono back in the end of the 1980's. I would ahve been much better health-wise if I had gotten thyroid meds back then already but then the stupid TSH range.

For doxy or ther things, it is possible to get them off the internet, like www.riverpharmacy.com, I am in Europe and had to get Revia that way (for LDN) different story than yours. Not very expensive, good quality although from India.

I you have no money as like noen at all, you could make a biotensor and get a friend to test you but I would think they should have some practice in alternative medicine for it to be reliable.

On the forums I have read about the cheapest therapy there is: salt and vitaminC. You can check it out on www.lymephotos.com and there are some things about it on various forums. I have read some german threads on forums that are some years old and some swear it helped, but it took one-and a half years. I really cannot guarantee it. They report sea salt or himalaya salt works a bit better than the pure aquarium salt. ordinary store salt has some additives. Vitamin C has to be pure too. Some use salt tablets for medicinal use. Often they use a biotensor to determine doses. About biotensors, check the bionic thread at the lymeflash forum. I made one just to try it out.

All this is just me thinking loud (or, typing) and not meant to be instead of medical advice form a real doctor.

My fatigue disappeared after seven months off gluten.

Can you just move in with the parents and try to ignore the fighting ? I would think that would be better than a shelter. Been without a place to live myself. One gets so limited then. I should have moved in with my sister in another town in afterthought. So I would say move in with someone you know, like your parents, of any friend, anywhere but a shelter. Been there, done that, got t-shirt, thrown away t-shirt.

Yes, sugar and carbs=bad. I get ill from them too, even if gluten-free.

OT:Check out this story Open Original Shared Link from the UK, we are not absolutely cared for in Europe either.

nora

[AliB]

When people have these kinds of symptoms then Lyme seems to be a possibility, but some have mentioned that they don't live anywhere near it.

It is here in the UK but is not very problematic, yet there are a lot out there who still display with Lyme type illnesses. Lyme appears to be caused by any one of three kinds of Borrelia bacteria that can be transmitted via ticks.

Whilst incidences of Lyme do occur and can often be traced back to a bite, there are a lot out there who have no recollection of ever being bitten. It is possible to miss a tick but this kind of brings me back to the possibility that symptoms that mimic the Lyme may also be caused by other bacteria and/or parasites that can be transmitted via other routes.

People can be tested, but it is like Celiac - if you get a negative result you are then back to square one - still sick and no further forward apart from a hole in your pocket! One thing the Lyme 'theory' doesn't answer is the seeming hereditary factor. Although not always, often similar symptoms run in families. They may not all have been bitten by a tick, but they can 'inherit' strains of rogue bacteria from each other. those who live together, share together - and that often includes bugs, viri, and bacteria.

In many ways I hope that you do get a Lyme diagnosis - at least then you would have a starting point, but like a lot of these illnesses, until Medical Science finds the cause of a lot of these things and is then able to offer some kind of diagnosis, the rest of us just fall into the black hole.

Poof - after all these years that people have been suffering with them they've only just started to recognise Chronic Fatigue and Fibromyalgia. How kind of them to catch up with us. Recognise it - yes. Can they treat it? No. Miracles aren't on the menu.

[Mtndog]

Castor- Just wanted to say I'm sorry for all you're going through, have gone through. My thoughts are with you.

I'm thinking about the money situation and one thing I do know about my LLMD and the pharmacists that custom make IV meds is that they will go out of their way to do what they can for you. Much of the time I've been in treatment for Lyme, I've been thinking about how many people (children especially) don't get treatment because of the financial aspect.

Don't know what I can do to help but feel free to PM me.

[Rachel--24]

When people have these kinds of symptoms then Lyme seems to be a possibility, but some have mentioned that they don't live anywhere near it.

From what I understand the disease is everywhere (maybe not so prevelant in Alaska though)....it would be difficult to not live anywhere near it.

Poof - after all these years that people have been suffering with them they've only just started to recognise Chronic Fatigue and Fibromyalgia. How kind of them to catch up with us. Recognise it - yes. Can they treat it? No. Miracles aren't on the menu.

Much progress has been made in understanding the genetic aspect to these conditions as well as some of the triggers. From where I sit....I see that miracles are already happening. As far as the question "Can they treat it?" I would say that "Yes....they can."

It depends on the doctor's knowledge and experience with this type of illness.....but with the right treatment (it wont be the same for each person) people can and do recover.

[castor]

Hey everybody, I'm feeling a lot better today, had a long deep sleep last night. Does anybody here with lyme, when they get flare ups have problems with insomnia during?

I thought of something everybody here could help me with, and I think it could help a lot. - diet

At this point, I really don't know what I can/should eat anymore. I don't have a diagnosis, but one thing that is shown is bacteria is screwed up in my guts, but with doctors I've had no advice on what diet I should be on. For now I'm just going to skip worrying about getting a full diagnosis, and do what I can myself right now, try and detox a bit and go on a strict diet of things that should be safe. (finding out that with medicaid and the doctors here, since it's not a cut and dry illness, the medicaid is somewhat pointless - more on that later today).

The one thing I can control though is what I eat. I've stopped drinking soda several weeks ago, cut out most all caffeine (still drink tea), and haven't eaten fast food in a few months. The good thing is I love healthy type foods, I usually have some amount of fresh fruit, and I eat salads a lot, so I don't think a diet like this is going to be a huge stretch for me.

What you can help me with, is to suggest what things I can or should be eating (I know that's hard without knowing what exactly I can't eat, but there has to be a small list of generally safe foods)

Pretty much, those on a strict diet, what's on your shopping list??

It looks like there could be an intolerance with gluten, though not full celiac disease, I've had bad problems with eggs since I was 13 (btw, I'm 24 if anybody was wondering), so that's already been out of my diet, but I think I should exclude things related to eggs, might be developing a lactose intolerance now, and I have read and heard people say simple carbs and sugar are a no no. I'm not sure if candida is a problem, never had signs of that but I could have missed them or are covered up by other things.

So, what does that leave? What should be on my shopping list? Knowing that would help me more than anything right now, as I have no idea what to even eat or buy at the store anymore.

I don't have any income, but I am on food stamps, and get the highest amount for it, so I do have money for food, but it's a fixed income, so simple and cheap will go a long way.

(I'm all for flavor... so if there are safe ways I can jazz things up, some tips on that would be appreciated too, I love to cook and am generally good at it, so I'm good at putting simple flavorful things together, but I just don't know anymore what is 'safe')

Oh, also, what things can I do to help detox? I'm leaning towards thinking that is a big problem right now too.

Any info you can give me would go a long way right now, I'm going to get around and pick up a little around the house, things get disorganized a lot during my down days. When I get back I'll start to write more about what is going on now, and what all has lead up to this (I've cheated death 5 times now.... ha)

Thank you everybody, I mean that.

[nora-n]

I just want to mention that several websites say independent of others that carbs and sugar really feed bacteriae.

They also cause inflammation, and aggravate autoimmune illnesses.

to detox you need glutathione, and vitamin D is important for making glutathione.

(lots of vitamin D)

Coffee enemas are said to work on the liver to release glutathione.

You need to eat enough proteins to make enough glutathione.

Have you ever seen the zone diet books? There they explain how important it is to eat enough proteins, and which ratio to carbs, namely 0.6 proteins to 1 parts carbs. I have tracked my food intake some days, and I always got more carbs than I thought, and it was just barely inside the right ratio. even a fruit would have put me well outside the zone, so one often has to cut down on some other carbs if eating a fruit. It is said that the immune system works much better inside the zone and they give reasons why.

I mean, lots of people can live quite ordinary with lyme, but when something compromises their immune system, lyme takes overhand. Like mold, that is known to cause the lyme to flare. Stress, too.

I think others know a lot more than I, I just mention some things I have picked up.

Maybe the website of betterhealthguy has more about food and detoxing, or vitamins and minerals, but I have not studied it. He has a genetic fault that makes it difficult to detox I think.

Autists have a fault in their methylation cycle. There is a lot about that on some places on the web. This might be treated with diet too but I am not on such a diet, it is just something I seem to remember.

You can try to do a search on this forum too.

Igenex: Open Original Shared Link but if you are very sick with lyme, you most likely will be negative for ordinary antibodies, and I have read that some advocate first going on antibiotics for a month, and then test for lyme as the body then maybe is able to make some antibodies. (must be referring to IgG and IgM antibodies I think) Igenex does other testing too, the interesting parts, where they look for parts of proteins on the cell surfaces of borrelia and co-infections.

Can you eat gluten-free?

nora

[Mtndog]

From what I understand the disease is everywhere (maybe not so prevelant in Alaska though)....it would be difficult to not live anywhere near it.

Much progress has been made in understanding the genetic aspect to these conditions as well as some of the triggers. From where I sit....I see that miracles are already happening. As far as the question "Can they treat it?" I would say that "Yes....they can."

It depends on the doctor's knowledge and experience with this type of illness.....but with the right treatment (it wont be the same for each person) people can and do recover.

Rachel's absolutely right- Lyme is, unfortunately, in at least 48 of the 50 states (I think Montana and Alaska may be the exceptions). Think of it this way- a woman was infected by a deer tick on her Christmas tree! I try not to be an alarmist, BUT I think it's a very rapidly growing health crisis.

But yes- it can be treated. I tried to post a link about Lyme Success Stories but it won's let me so I'll PM it to you.

[AliB]

From what I understand the disease is everywhere (maybe not so prevelant in Alaska though)....it would be difficult to not live anywhere near it.

Much progress has been made in understanding the genetic aspect to these conditions as well as some of the triggers. From where I sit....I see that miracles are already happening. As far as the question "Can they treat it?" I would say that "Yes....they can."

It depends on the doctor's knowledge and experience with this type of illness.....but with the right treatment (it wont be the same for each person) people can and do recover.

Whilst anyone can be bitten by a tick and be infected, not all ticks are carrying the bacteria. I can't help wondering if though there may be other sources of infection like say, improperly cooked meat. Not only are we targeted, but so are animals. The spirochaete bacteria are so minute that they can infect any area of the body. How do we know that we are not eating meat that is contaminated with this and other equally invasive bacteria?

CJDv is caused by a bacterium passed on to cattle through infected feed. Salmonella is a bacterium passed on through improperly cooked meat and improperly cleaned vegetables. Some types of bacteria cause problems. Some types of bacteria can infect us without our knowledge. Knowledge of this area is still very limited. We don't know the half of it.................

I would beg to differ about treatment for CFS and Fibro. There is none. We have a friend, who at 31 years of age has been robbed of his youth by CFS which has dogged him for the last 12 years. He wakes up every morning with a headache. He rarely goes anywhere, and if he does he usually is bedridden for 2 or 3 days after. What has the Medical Profession offered him? Painkillers.

I have another friend who has been, until recently, totally bedridden with CFS for 5 years, unable to do anything, read or even watch TV. It has been a living death. Her husband has spent a fortune on alternative treatment little of which appears to have benefited her. She can now sit quietly for 2 hours a day before returning to bed. She cannot cope with visitors, the phone, loud noises, traffic, etc. What did the Medical Profession offer her? Anti-depressants.

My husband has Fibro. He has improved considerably on the gluten-free diet - a benefit he has gained by following my lead, that I discovered through my own efforts. What has the Medical Profession offered him? Co-proxamol. The best the MP can offer is basic management - that is nothing anything like the same as treatment. There may be a few that manage to recover but for every one of them there are many others that don't.

I rest my case.

[Rachel--24]

I would beg to differ about treatment for CFS and Fibro. There is none. We have a friend, who at 31 years of age has been robbed of his youth by CFS which has dogged him for the last 12 years. He wakes up every morning with a headache. He rarely goes anywhere, and if he does he usually is bedridden for 2 or 3 days after. What has the Medical Profession offered him? Painkillers.

It doesnt sound like he's actually being treated for anything though. Painkillers are not a treatment.

Plenty of people with these conditions do get better.....but not by taking drugs which are used to treat symptoms only.

If the doctors he is seeing are not getting to the root of the problem.....then he's not going to feel any different. You cant treat something if you dont have a diagnosis.

In my opinion CFS and Fibro are not a diagnosis.....they are a label given to symptoms with no known cause....same as IBS. If a person has Celiac and yet all they are treating is "IBS"....obviously, there is no chance for recovery. If they never see a Dr. who is wise enough to test them for Celiac.....then they live with the IBS symptoms (and the drugs which are prescribed as "treatment").

Many Celiac's are only properly diagnosed because they did some research and took the necessary steps to get properly tested for the disease.

The first 3 years of my illness I saw doctors who only offered drugs.....as well as chronic pain classes so that I could learn to live with this "condition" and also so that I could learn about the various drugs that are used to mask symptoms. If I wanted to live with a CFS diagnosis or a Fibro diagnosis...I could have chosen that for myself.

Instead I chose to research and to seek help from more knowledgeable doctors who are treating these conditions by getting to the root of the problem.

For example....many diagnoses of Fibromyalgia are actually people living with undiagnosed Lyme Disease. So unfortunately, until they seek someone who specializes in properly testing and diagnosing Lyme.....they do not have any chance for recovery.

Sometimes if we really want to get the answers....we have to do a little bit of searching ourselves. If a person suspects Lyme but does not seek a doctor who is knowledgeable about Lyme....then the chances for recovery are slim (if the person does have Lyme).

Basically what I'm saying is that if you go to a doctor who's only "answer" is to prescribe painkillers......then all you will get is painkillers.

On another forum someone had this quote in their signature...and it has stuck with me.

"If you do what you always did.....then you will get what you always got". (or something to that effect)

Its not really accurate to say there is no effective treatment....because there is. As long as you know what is causing the symptoms.....it can be treated. However, if you do not seek any answer (beyond the "label") then you just end up living with the symptoms.

I can share similar stories of people in my area who are living in pain and isolation. I was sad to hear about a 16 year old girl who is suffering so bad from Fibro. that she cannot attend school. She has arthritis and can hardly walk, she cannot climb stairs, she cannot think with a clear head and lives in constant pain. There are no boyfriends, no school dances, no playing sports or hanging out at the mall. She lives with a Fibro. diagnosis and sees the BEST doctors at a prestigious medical facility....who continue to give her drugs....and she continues to deteriorate.

I gave her parents some info. on Lyme Disease.....but it was not something they chose to look into. It may or may not have been an answer.....but without looking into it....there is no way to be sure.

On the other hand.....there are many people who were once in a similar situation as this girl (with Fibro)....but who have since recovered because they were properly diagnosed and treated.

[castor]

I have a feeling this is going to be another sleepless night so I am going to sit (lay) here and type out a lot of what has led up to now, it will most likely be somewhat lengthy, but that is more because so many things have happened, has just been one horrible thing after another most of my life. Plus, in reading an article written by the doctor who was on the forefront of treating lyme that took his life (can't remember his name) about people that have chronic lyme, they tend to get very wordy and into details in everything they write which I am very guilty of, to the dismay of friends that would get 3 page emails from me all the time. I was a great at essays at least......

I'll try to keep to relevant details though, try at least.

Ha, one thing that stood out to me in your post nora_n was about how mold is known to cause lyme to flare. Heh... wondered if there was any connection to that. The last apartment I was in was the top floor of a very very old brick house, built about 1890. It was cheap... $300 a month plus gas and electric. About two months in, the roof started leaking where the chimney was like there was an open skylight. There was a drop ceiling and the water would spread out on the drywall and come down through the seams, so whenever it rained, it rained in my living room. I complained and was assured it would be fixed in no time, (if only she wasn't a slumlord). It was about this time I lost my job and couldn't find another one. So as time went on, and her continuing to assure me, then saying nothing could be done yet because she was sueing the guys that put on the roof and until that was over nobody could touch it. I should have taken legal actions myself or gotten out of there when I look back on it, but there wasn't anyplace else and I was becoming severely depressed and wasn't in a state to really do much about it.

After about a month or so, the mold started to appear. The ceiling at this point was sagging in a lot of place and around the chimney started to turn grey, then black. I lived with it like that for 4 months. Why didn't I do something about it in that long? My reason was I had no income and couldn't pay rent and was two months behind, and I didn't want to push things and end up without a place to live. After four months I guess she won the suit and carpenters came and redid the ceiling and walls and supposedly fixed the leak. When they were tearing down the ceiling drywall, I found there was a double layer and between the two layers was solid black extending out from the chimney covering half the ceiling. It was around then that I stared to not do as well physically, more daily pain of what I assumed was from my two car accidents. I lived there another about three months and moved to where I am now about 5 months ago, which shortly after is when I started to drop weight. From 220 (bit overweight for me but I'm somewhat tall with a larger frame) to where I am now at 170.

I'm going on a full detox regime starting tomorrow, or at least as much as I can figure out what to do to detox, I'm thinking that is a must right now.

Told you I get wordy. I'm going to do a couple things and come back and write some more.

[CarlaB]

Hi, I did not read the whole thread or whole posts ... I'm in Germany for Lyme treatment so have limited time on the computer.

My fibro and CFS are being cured with the Lyme. I also had mold exposure that triggered the Lyme.

A very high percentage of ticks .... something like 70% .... have the bacteria plus loads of other bacteria. I have Lyme, babesia, and bartonella from my tick bites.

Lyme is epidemic. I would suspect it in anyone with CFS, fibro, ALS, MS, Parkinsons ... anything which causes symptoms of unknown origin. The thing is, they need to look for the root cause for people to get better .... many times it is Lyme.

My Lyme treatment in Germany is going GREAT! I am one week into the three week treatment and feel close to well. There are 5 others staying in the same guest house I am and all are seeing improvement, though those who are extremely ill are improving more slowly than I am.

I hope, Castor, that you get some answers. I agree, it sounds like Lyme could be the root of your health issues. Remember, Lyme never comes alone ... there are also metals, mold, and other toxicities to consider. I HIGHLY recommend www.biotoxin.info .... look at their webcasts.

[castor]

I guess I'll start in my childhood when I believe I would have been infected with lyme if that's what it is.

I'll try and keep this part short. I was born just outside of Philadelphia, but moved to where I am now, the very northeast part of Indiana right before I turned 5. My dad is full sicilian, and has the Italian temper to go with that. He was abused severely by his stepfather, which translated into how he dealt with my sister and I. I went through years of severe emotional abuse which sometimes turned physical. I won't go into all that, but to give you an idea it was the kind of situation where as a little kid you feared that any day he would snap and beat you to death. His favorite thing to say was 'I brought you into this world and I can take you out'. I wasn't a trouble maker or anything though, pretty much the opposite, always kept to myself, horribly shy and never said much and tried very hard to do well to please a father that could never be, but I did anyway to help keep him from doing anything worse than he already was. (unlike my sister who would provoke him till he would punch her).

Every summer from around the age of 6 till I was around 11-12 my sister and I would spend about 3 weeks at my grandmother's, who lived on a lake pretty well in the middle of nowhere. She had a big hill on her property covered with trees and I'd spend most days running around up there (tall grass and all) playing games little kids do. I would suspect if I have been bite by ticks, it was then but I was too young to have really noticed if I had been. A few times while there I had gotten very sick, if I remember right one time looked like a horrible flu bug (though it was the middle of summer). The other time I had actually contracted pneumonia but I had been out on a unseasonably cold day in the rain fishing. I was actually hospitalized then from severe dehydration and could have died. Ha, that was the last time I spend the summer at my grandparents. (this was still in Northeast Indiana, where I have no idea if lyme would be more prevalent here or not, anybody know?)

In school I was always known as the smartest kid in the class, the kind of odd ball people just make friends with so they can copy their work. Never had many real friends, and none that lasted, I was always so... I guess different than everybody. My mind just didn't seem to work the same, and I never understood the kids around me or why they acted like they did. From this I became a bit of a recluse, Our school system was awarded a grant when I was in 4th grade for each student to take home a computer, with which I quickly excelled. In fifth grade they would actually have me go around to different class rooms and fix computers that were messed up, and I was often almost training the teachers on how to use different programs. I soon after discovered the internet and the joy of disappearing in the veil of anonymity. At this point I rarely left my room, I wasn't allowed to have friends over the house, and nobody ever invited me over so I spent most of the time out of school holed up in my bedroom avoiding my father.

I always scored very high on everything, was in the gifted and talented program and such. But my intelligence was different than others, it was more big picture and impractical, my memory was never that great and spelling was my death. Still is but I have the spell check program going right now but even it has no idea what I am trying to spell. Towards the end of middle school though I started having problems concentrating, being organized, and my handwriting went from being immaculate to chicken scratches. I continued to do well, but it was like I could no longer keep my mind focused very long. I was an avid reader having always read several grade levels past where I should have been but it was becoming harder to concentrate on what I was reading.

I had been in band since middle school, always had a love for music and joined the high school marching band in 8th grade (they would take 8th graders to increase numbers). I made some friends in that as I spent days on end with them all and things seemed to be going decently. In high school the stress of an abusive father was starting to get to me though and was becoming more and more depressed and just wanted to get away so badly. I focused more and more on my studies so I could get into a good college far away from my family. I became more and more the reject in the school though, that didn't fit in exactly anywhere and I continued to keep to myself while becoming more and more of the odd one out, people just didn't get me.

Somewhere around then during a physical they discovered I had protein in my urine. They didn't do anything other than have me come back a few more times to recheck things, maybe gave me a prescription, don't remember anymore, but it soon showed up clear and that was that, never had figured out why. Shortly after I then developed a strong intolerance to eggs. It became evident while I was on a trip to a marching band competition and very stressed out. (marching band in a school that is very competitive with it can be extremely stressful, some that have been in it might know what I mean). Since then I haven't been able to eat any sizable amount of egg without having to run to the bathroom a few hours later (with often very painful consequences).

Oh, an odd thing from when I was very young is I would get horrible D from drink black soda's, coke/pepsi or Dr. Pepper, but not root beer. It was something I grew out of but never did figure out why.

It was my sophomore year that I got a letter in the mail about an invitation to apply to the Indiana Academy. It was a state run and funded academy where you would live in a dorm donated by Ball State, on campus, and go to school in a college setting and difficulty for your junior and senior years of high school. What you would get out of graduating from there, was an almost guaranteed full scholarship to most any college you wanted to go to. I had very few friends, none I would go and hang out with, most people avoided me like I had three heads, and I desperately wanted to get out of the house and away from my father and this was my ticket out. Oh, there was also the very strong rumor that everybody believed of that I was gay (which it has turned out I am very much not, never was, I was always just so 'weird' and extremely emotional. I ended up crying in middle school twice at school.... Haaa, that never goes over well for a guy. But I have always had such overpowering emotional responses. I remember back then too, leading up to the academy, I had regular horrible bouts of D when I would get stressed out, but it was always dismissed as just caused by stress, which seemed to fit.

I applied to the academy, jumping through this and that loop, doing interviews, get recs from teachers, filling out this and that, and towards the end of my sophomore year I got the call telling me I was accepted. One out of 150 students from the whole state that they pick each year. I was ecstatic, I was getting out of an abusive situation.

The last day of my sophomore year, I pretty much told everybody to F off, they were all bustards to me and go F yourself.... haaaaa, I didn't think I would be going back and a lot of them made my life a bit of a hell.

Well, that's everything leading up to what happened at the academy, the first real traumatic occurrence after which I when downhill like a sled with a rocket on the back. All of what I wrote up till then, was the actual 'normal' part of my life. I was that weird guy in school that everybody knew would be successful, I wish that came true. I scored a 1440 on the SAT's half way through my sophomore year with a 139 IQ, how could I not be successful? Try completely losing it, drug after drug, three suicide attempts, two near fatal car accidents, developing a drug addiction (which led to a weeks jail stay), 6 inpatient stays in mental wards, being rushed to the ER numerous times, and three months in an institution.

I've moved past all the things with the drug addictions, and problems with mental illness, my mind is a lot more clear now, after I refused to take anymore pills that just messed me up more. Been clean for over 2 years, but I just can't seem to get my life going again, and now this with my body.

Generally, I think things like that can mess up ones life. More details on all of that probably tomorrow, but it is all those things that have left me where I am now, penniless, filed bankruptcy, not a single friend, nobody trusts me or even wants much to do with me, and soon to be homeless.

Just so anybody knows, moving in with a family member is sadly not an option, nobody in my extended family wants to even be in the same room with me, and my dad had attacked me two years ago, and my sister may be going into a divorce over money issues and thinks I am scum...

So, I am on my own with this, and because of my history, I have yet to find a doctor that takes me serious.

I have hope still, I still have a drive in me. There's a girl I talk to everyday online that has keep me going, and to her I owe my life or I wouldn't be here now.

[castor]

Hey Carla, it was actually your post in my first thread on here that got me wondering about lyme. I had suspected lyme in the back of my head for years, but I never knew much about the disease and always thought it was rare and mostly just people that were outdoors all the time would usually have it and never remembered anything about a tick bite. I did some more research after reading your reply back then, and the more I read, the more scared I got realizing it was most likely that all along.

Some of the things and peoples stories have almost been like reading about myself.

It's very good to hear you are getting top treatment where you are now in Germany, keep us updated on your progress when you have time!

I'm going to take a look at the site you mentioned tomorrow, I'm headed to bed right now though. Crap, it's 6:30am... I hate my sleeping patterns.

--------------------------

Oh, one thing to anybody reading this. I'm looking for a detox diet, I've found a few things, but a lot of what I read are people talking about the diets, but not what exactly the diet is. A lot point to books that tell of this or that diet, but I can't buy any books right now though I wish I could. So, if anybody has some links that better spell out specific diets, and not just about the book the diet is in (seems all I keep finding are sites about diet books and not what's in the diet) that would be very very helpful.

[Rachel--24]

I have hope still, I still have a drive in me. There's a girl I talk to everyday online that has keep me going, and to her I owe my life or I wouldn't be here now.

Castor....as long as you have hope and drive you will be OK.

I'm happy that you have someone who is there for you and keeping you going. We all need that.

In my opinion alot of your health problems probably began with the emotional traumas that you experienced as a child. The fear, abuse, etc.......these types of things can set us up for chronic disease and are often at the root of it.

I have seen a handful of doctors who treat Lyme, metals, mold......the whole "realm" of it.....and one of the things they always look into is the emotional traumas. Thats because people who end of with all of these issues weighing down their health often have experienced abuse or conflicts in their life which have never been resolved in a healthy way.

It is known that chronic stress can lead to illness.....the type of childhood that you describe was not healthy and this can have a profound effect on how well your body is able to cope with additional stressors....such as infection, toxic exposures, etc.

Everything plays a role.....emotional or physical trauma, unresolved conflicts, genetic predisposition, exposure to toxins and exposure to disease causing organisms.

Many people are exposed to lyme and do not become sick....and the same is true for heavy metals and other toxins. Some people completely lose their health when exposed to these same things. Genetics is probably the biggest factor.....but having the type of childhood you describe would certainly be a huge factor. Every child deserves to be loved and nurtured.

A few of my doctors have evaluated me (in one way or another) to see if there is an emotional component to my illness. This has been ruled out every time....and I have no memory of anything traumatic ever occuring in my childhood or in all of my adult years leading up to the time that I became ill. So in my case they are looking more at genetics....however, if there was an emotional trauma or an abusive childhood......this would need to be addressed.

I dont know if you have done this already, but in my opinion it would be a step in the right direction to deal with some of the emotional traumas and other conflicts you experienced in your life. Some people "bury" the feelings and memories and this leads to unhealthy lifestyle and disease. The doctors I see would feel that if I had these types of issues they would need to be brought to the surface and resolved in a healthy way before I could ever begin to truelly detox my body of everything else which has accumulated (toxins, infections, etc).

These emotional burdens are also toxic....and they do need to be "detoxed" or the body sometimes holds onto the other toxins as long as the emotional traumas remain unresolved. This is something that has been proven time and time again by the doctors who treat these types of chronic illnesses.

Since you are unable to afford all of the testing and treatments for Lyme, etc. at this time....it would be good for you to work on a good diet that is free of chemicals, preservatives, additives, etc. It would also be good to reduce your exposure to chemicals and other toxins in your environment. In my opinion it would be most rewarding if you can get some help in dealing with the emotional things you've lived with.....bring those things to the surface so that they are no longer "polluting" your body. Letting go of those things will promote healing....its healthy and its an important step in recovery.

I'm also someone who cannot tell a "short" story.....and my posts can be quite lengthy... I have to provide EVERY detail. I can relate to that.

I know of the LLMD you mentioned who took his own life. I dont know if I read the article you were talking about....if you still have it can you pm it to me? Anyways, awhile back I was speaking on the phone with someone who has alot of knowledge about chronic lyme....and all of the things that come with it. She is well now (very healthy) but had to deal with many things in order to achieve that.....including facing some of the emotional traumas that had occured in her life.

She mentioned to me that she can tell a "mercury toxic" person just from listening to them talk and watching how they write. She said they go on...and on...and on....and on.

Yup...that would be me!

Lyme and heavy metals pretty much go hand-in-hand....so most people with Lyme also have accumulated mercury and other metals as a result of impaired detoxification. Its all related....the emotional stuff, the infections, the toxins.....they all accumulate when detoxification is impaired....and they all are capable of making it more difficult to detox.

[AliB]

Castor, I would agree with the previous posts about stress. Continuous stress is very damaging for the body. You may well have been gluten and/or dairy intolerant all your life which could also have exacerbated your health problems.

Whether it is Lyme or not cannot be established until you have had some kind of testing for it, but in any case I am sure that some kind of bacterial activity is definitely a great contributing factor.

Have a look at the SCD. You won't lose anything by trying it but you might just gain a lot.

[AliB]

Rachel, just because I didn't mention that our friend has tried other treatment for his CFS does not mean that he hasn't. I know he has tried other avenues including acupuncture, homeopathy and herbal treatments, to no avail. As a young man on very limited income who has to pay for any alternative treatment he has few options. We may have the NHS, but the choice of treatment offered is drugs, drugs or, well, drugs.

Those of you in the States who can get good 'alternative' treatment on Insurance are very fortunate. Many of us do not have that option. For us it is either drugs, or nothing.

You keep banging on about getting good 'doctors' on board. Many sick people out there are so poor they cannot afford to even buy insurance and their choice is very limited or non-existent. Many of us over here are too sick to work and too poor to be able to afford other options. We can only rely on Government handouts or our own resources.

We do not have the luxury here in the UK of patient choice. You are placed with a doctor and are pretty much stuck with him/her whether you like it or not. We cannot go hunt for a 'specialist' knowing that our insurance will pay for it. Doctors and 'Alternatives' cannot 'sell' themselves over here like they do in the States so we do not know who is best for any particular problem and those who have managed to gain a good reputation in their field usually are VERY expensive.

It is frustrating but there is nothing we can do about it. Believe it or not, I actually find it depressing when others say how they have managed to get good doctors on board and are getting better as a consequence. I can't go there, and it hurts.

[Rachel--24]

Rachel, just because I didn't mention that our friend has tried other treatment for his CFS does not mean that he hasn't. I know he has tried other avenues including acupuncture, homeopathy and herbal treatments, to no avail. As a young man on very limited income who has to pay for any alternative treatment he has few options. We may have the NHS, but the choice of treatment offered is drugs, drugs or, well, drugs.

Ali,

What I was saying is that you cant treat something until you know what you're treating. Whether you are taking prescription drugs or doing alternative's.....if you do not have a diagnosis and you dont get to the root of the problem....none of these things work.

Whether its IBS, CFS, Fibro, MCS.....or some other "label"....in my opinion you still need to get to the bottom of things in order to have any type of treatment be effective. What is causing the symptoms?? If you dont have that answer....how can you treat it?

I have MCS, I have also had the IBS "diagnosis".....and I could have had the Fibro or CFS diagnosis as well. I have (or have had) the symptoms for ALL of these conditions....however, having a "label" telling me that I'm sensitive to chemicals doesnt really help me to get better. Having a "label" to tell me that my bowels are irritated doesnt give me an answer either. Its the same with Fibro and CFS.

Even if the doctors gave me all 4 of these "labels".....it changes nothing as far as how I am going about looking for the underlying problems. If I stick with the doctors that gave me those labels to begin with.....the only treatment I will get are the ones that dont actually get to the root of the problem. It doesnt matter whether its western medicine or holistic medicine.

Those of you in the States who can get good 'alternative' treatment on Insurance are very fortunate.

I know that you are under the impression that because I mention that there ARE doctors out there who are knowledgeable and who DO help people to get better......must mean that I have very good insurance or that I am rich. Neither one of those is true.

The way I see it I had only 2 choices. One was to stay with my HMO where I could see the doctor 6 days a week (if thats what I wanted to do), have them run any test I wanted, pay my small co-pay and get no-where with my health issues.

OR...I could walk away from that, have much less coverage, but be able to make my own decisions as far as doctors go. As far as alternative stuff.....I'm not covered for it. I pay for any supplements or alternative treatments out of pocket. I get only $500 per year for anything like acupuncture (or alternative treatments falling into that category). $500 doesnt go very far and I also have a large yearly premium.

A few of my doctors are "integrative" M.D.'s.....they combine western and eastern medicine. If drugs are necesssary...they will prescribe them.....BUT they will not prescribe them to treat symptoms...they will prescribe them to treat a specific problem. If you need something for yeast, or bacteria, or virus.....then thats what you get. If you need chelation....then thats what you get. If the tests show that you need thyroid meds....then you will get a prescription for that.

Because they are M.D.'s...I get some coverage....for some things. The most I'm covered is 50%...and for some things I'm covered at 0%.

Some of the other people I've seen are not covered (past the $500) because the testing/treatment is alternative.

These were my two choices and I chose to pay for alot of what I have done out of pocket....because I felt it was truelly my only chance for recovery. I just had a genetic test done....it cost me $400. None of it was covered by insurance....but I chose to do the test anyway. Getting answers is important to me.

I'm single and I work. I dont get paid alot......not for someone living in San Francisco Bay Area anyway. Its an expensive area to live in. I dont get to go on vacations, I dont do any of the things I did prior to getting sick. I dont spend money on material things the way I used to be able to. Instead I work to live, eat and pay my doctors.....none of the "fun" stuff.

Thats my choice and I dont know that I would call any of it a luxury....I dont "get" to do anything knowing that my insurance is gonna pay for it. I choose to do what I can afford and I also set money aside (that I pretend is not there) and if anything comes up that I really need and dont have the money for....I will go into that savings. Everything I have is for my health....all of it.

Doctors and 'Alternatives' cannot 'sell' themselves over here like they do in the States so we do not know who is best for any particular problem and those who have managed to gain a good reputation in their field usually are VERY expensive.

It took me a long time to find good doctors.....I didnt just pick up the phone book and there they were. NONE of the doctors I've seen since leaving my HMO were "selling" themselves. The first one I saw I learned about while shopping in a store which sold gluten-free foods. They had a list of doctors in the area who are famiar with Celiac and gluten intolerance. I chose the more "alternative" one.....over the Celiac specialist at Stanford.

That doctor didnt have the answers for me so he referred me to someone else. This is how I came to know all of the doctors I've seen....because they know of each other and they do not try to hold me back if they feel someone else is more knowledgeable. If Lyme were my main problem...then I would be seeing the best guy in my area for that. Likewise if I had a problem with mold...I would see the guy who deals with this. Right now I'm trying to find out if my problem is in the methylation cycle....so I'm seeing a doctor who is experienced with this.

I never just turned on the TV or picked up a magazine and saw an ad for these doctors...although I have seen plenty of commercials for drugs which could probably help with some of my symptoms...if I wanted to go that route.

I'm sorry for anyone who does not have the resources....and its unfortunate that everything is so very expensive. However, I dont feel that there is anything wrong with letting people know what I did to get myself out of the situation that I was in...and how I found better doctors. I know plenty of people here who did the same....and are now better off having made the switch from doctors who werent helping to someone who was actually able to give them a real diagnosis and a chance for recovery.

Its not hopeless and its definately not accurate to say that there is no treatment at all.

I do know the pain of not having a doctor who can help. I went through it for 3 years....and for 2 of those years I was at home on disability because I was too sick to work and noone could help me. I helped myself by learning some things online, changing my diet, quit smoking, reducing chemical exposure... and it worked...I went from non-functioning to getting back to work full-time.

It was only then that I realized I had to make changes and get some knowledgeable doctors if I wanted to try to make a full recovery (or come close to it).

I dont see anything wrong with "banging" on about good doctors....at one time I wasnt sure that any existed. I was very depressed and angry about the kind of "healthcare" I was getting. If someone had told me where to go for help....I would have jumped on it. Some people do have the ability to see someone that might be able to help them....but they just dont know where to look and have given up hope that they will ever find a doctor who truelly understands and is familiar with what they are going through.

So I'm here to say that it is not hopeless and that there really are some good ones out there.