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

[Rachel--24]

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.

I dont know about improperly cooked meat. I havent heard of it being transmitted in that way but it doesnt mean its not possible. The bacteria has been found in unpasteurized milk....but its not certain whether or not a person can be infected in this way.

The disease can be transmitted by insects other than ticks.....such as biting flies, fleas and mosquitos. It is known that the bacteria crosses the placenta and infection is possible when this occurs. Even though the bacteria has been isolated in body fluids (semen, tears, breast milk and urine) it is not known at this time whether or not transmission is possible. Many doctors believe that it can be passed on by these methods.

My personal opinion is that it can....however, I dont believe that everyone develops Lyme Disease as a result of exposure. There are many other factors that play a role in who gets sick and who doesnt.....including genetics, lifestyle, diet, exposure to chemicals, exposure to mold, exposure to heavy metals, etc.

About the UK, Lyme Disease and CFS.....this article has some good info. on that.

Open Original Shared Link

Many people in the UK with ME/CFS who are now being tested privately are finding they are infected with bacteria from the Borrelia species that cause borreliosis or Lyme disease. It wouldn't be surprising if a very significant percentage of those currently with a diagnosis of ME/CFS are actually infected with Borrelia or similar bacteria. An e-mail group poll showed that 80% of those with a diagnosis of borreliosis or Lyme disease had a previous diagnosis of ME/CFS.

Ticks In the UK Are Infected With Borrelia

Many UK doctors don't know that you can get infected with Borrelia from ticks in the UK. The Natural History Museum tested many of its UK specimen ticks (PCR testing, which stands for Polymerase Chain Reaction testing of tick DNA), and found that between 8% and 97% were infected depending on the species of the tick. Some of the specimens were 100 years old. Another study from Swansea showed 30% of ticks in woods in South Wales were infected with Borrelia and 7% with a co-infection erlichosis.

It can only take one tiny tick bite from an infected tick for a human to become infected - a bite that goes totally unnoticed more often than not.

The problem in the UK is that most NHS doctors will usually only go by highly unreliable UK NHS tests. Even if you get a positive result from a reputable private test, most NHS doctors will just ignore this, although a few may go by it. Even if you have a positive result from a UK test, it

[mftnchn]

I'm traveling so have just skimmed along here. I agree, it sounds very like lyme. I wonder if there is a support group in your area that might help you. Also as young as you are and so debilitated, I wonder if there might be some source of help through a research source. You have you story written out here. Hopefully someone will be able to offer more suggestions.

[AliB]

What did you do Rachel, stick a pin in the list??? We do not have the luxury of 'integrative' MD's over here. It's usually a case of Orthodoxy on one side and Alternative on another, and never the twain shall meet.

An MD I had years ago, actually gave up being a doctor and became a homeopath, she was so fed up of being nothing but a glorified drug pusher and not really helping her patients recover their health. Unfortunately she moved away so I could not visit her.

I do not know of anyone who is 'expert' in their alternative field. Over here people tend to specialise rather than be knowledgeable in different areas, so you may find a homeopath, or an acupuncturist, or a chiropracter. Although there may be individuals out there who have a broad knowledge, how would we find them? How would we know that the money we pay them would be well spent?

Both my parents, and our friend with the shot immune system have spent thousands on alternative support as the Medical Profession was so impotent. They might as well have thrown the money down the drain for all the good it did them.

Our son recently spent a heap of money visiting a Naturopath down on the South Coast. She came with good 'credentials' - she's treated the like of Ellen McArthur - and charges for the privilege (I think it cost your entire year's budget!). She gave him some expensive supplements and put him on a low-carb, gluten-free, sugar free diet. Wow. Big deal. I could have done that for him for nothing! (Because I am not an 'expert' with letters after my name he wouldn't listen to me!)

Maybe things are done differently over there but here we have little choice. Although you may feel that the American system is still very wanting, it is a darn sight better than over here. Whilst there are always going to be 'cowboys' in any field, generally your medical system has a vested interest in knowledge gathering and helping their patients and building a good reputation. Those with the knowledge and ability of Dr. Mercola, etc., are few and far between over here and if they do exist, finding them is a minefield. Pointedly, the books I have gained the most useful information from are largely written by American and Canadian authors.

I could spend a heap of money if I had it and travel all the way to Scotland to see Jan de Vries as he is the only person I know of over here who might just have some kind of idea.

Meanwhile, as my 'ship' never came in (it didn't bother to stop and sailed on without me) I will sit tight and stick to what I do know and can rely on. Me.

[Rachel--24]

What did you do Rachel, stick a pin in the list??? We do not have the luxury of 'integrative' MD's over here. It's usually a case of Orthodoxy on one side and Alternative on another, and never the twain shall meet.

I dont know because I'm not in the UK....but I had no idea we had "integrative" doctors here in the US until I was referred to one. I didnt know what an integrative doctor was.....and all I knew of "alternative" stuff was that I figured they used herbs and "potions"....it wasnt something I'd ever really looked into.

I was doing my own research online....trying to figure out what was causing my symptoms. I learned about leaky gut, candida, lyme, mercury and on and on.....and then I quickly learned that the conventional doctors I was seeing were NOT going to help me with ANY of these possibilities. The more I mentioned it...the more they felt I needed to see a shrink.

I felt trapped because I thought I was stuck with them....and it was very depressing.

Although there may be individuals out there who have a broad knowledge, how would we find them? How would we know that the money we pay them would be well spent?

Most people find their doctors by word of mouth. I've met so many good people online and message boards (such as this one) are great resources. We have a "Doctors" forum on this board and if I were wanting a doctor who is knowledgeable about Celiac I would post in that forum.

If I were looking for a knowledgeable LLMD to rule Lyme in or out....I would go to the Lyme message boards and find out who is highly recommended. Once I had some names I would call their offices and find out what they treat.....how broad is their knowledge...are they familiar with all of the issues that accompany Lyme?

I was referred to all of my doctors....by other doctors. The newest one that I'm seeing I was not referred to. I was familiar with his name and was wondering if he could help me with the metabolic pathway stuff that I was wanting to look into. I asked the nurses and receptionists at his office to be sure he had experience with this...and I asked a friend (who knows most doctors in this area) what he knew about this particular doctor...what does he think of him?....does he know of anyone seeing him? etc.

So I dont just go to someone and hope that it wont be a waste of my time and money....I try to find out as much as I can about the doctor before I see him/her. Of course there are no guarantees but so far I have had all positive experiences.

I think its important for a doctor to have broad knowledge....but if I was seeing someone who knew a little bit about everything.....it probably wouldnt work out for me. I think you kind of have to narrow things down a bit....and in order to do that you probably would need to have some idea as to what might be causing your illness.

In my case I only see doctors who are primarily treating autistic children, patients with Lyme disease, heavy metal toxicity, gut issues, viral and fungal infections, food/chemical sensitivities and those sorts of things. If they only have a little bit of knowledge about each of these things then they probably dont have much experience and probably wont have much to offer me.

Like I said...I dont know what is available in the UK....but for 3 years I sat around depressed because I didnt know there were all of these doctors right here in my area. They werent advertising so I couldnt find them that way.

[nora-n]

In the UK, both dr. Skinner and Dr. Myhill have been dragged to a medieval tribunal called the GMC because they practiced outside the box. There were heaps of lies from other doctors, and no complains from any patients. Lots of lies from the investigating doctors who belonged to the GMC.

There were probably more wholistic doctors in trouble in the UK, but I know of these two from the thyroid forums.

I have hear of people who had moved to the UK from Scandinavia, who were absolutely shicked at the low level of help from doctors in the UK compared to here.

For examlpe getting blood tests and treatment for hypothyroidism, first they refuse to test you, and if you are hypo then they refuse to treat you until TSH is above 5,5. And then they only give you enough thyroxine to get your TSH within that range, not to 0,5-1,5 like here in some parts of scandinavia. Getting ft3 tests is impossible in some parts of the UK, even though the doctor writes it on the lab slip every time. If you need t3, it is not easy to persuade doctor to write a presciption. Let alone Armour Thyroid, very hard to get a prescription. Ther are forums there that tell you how to self-treat and get it from overseas for that reason.

That was about thyroid . Probably worse to get help for lyme.

nora

[nora-n]

My last post was a bit negative....

I try to post something a bit more helpful.

I ran across TFT, and Mercola posted on EFT or TFT (with full instructions), it is tapping on certain places which han to be on all the acupuncture meridians. Mercola has the full instrudtions, and so has www.emofree.com , all for free. The onldy things they sell is additional DVD's, everything else is free. This can help if you have had a lot of stress.

There are also many videos on that subject out on youtube.

I also found some good ones from mysticcmandy, and from there you can surf on.

PPhysical health is very connected to the mind. THis EFT can do things much faster than counceling.

The free instruction (I think you get it in an e-mail from emofree) is quite detailed and tells you why, and the youtube videos show you also how to do it.

Just to tell you there are some free things to start off with, when money is scarce.

I must admit i have not done it so much, but I tried it and it helped.

nora

[castor]

Hey, sorry it's been a few days, been somewhat busy. I got a call this morning about getting in to a gastro doc that I was on a waiting list, and could get in today, but had to be there in about 4 hours. Had to twist a few arms to get a ride there, but it was pretty much pointless. I think I would have gotten the same reaction if I went in saying my gills don't work anymore, can't breath under water!!!!

I am so sick of being treated like the crazy person that got must have got loose... guess I have to humor him. I'm not crazy....

This time was just plain blatant - leave me alone. The follow up app to, 'check my weight' in two months, is with a different doctor, so the 'crazy person' gets shoved off onto another doctor.

Should have listened to my therapist, he said there is no doctor here that is going to take me serious. I'm going to have to just take as good of care of my body as I can for now, and get out of this area, this place is toxic for me. I've moved on from my past, it's been two years since I've had those problems from before, but it's because of my past I can't get my life moving again. It's just haunting me now, people just won't let it go, which is actually causing me loads of extra stress, so I am going to take my therapists advice and 'get the hell out of Indiana'. Ha, sounds better by the second.

I need sleep.....

[CarlaB]

Sorry Castor.

No doctor ever took me seriously either, even in the face of a positive Lyme test ... that is until I saw my LLMD.

[luckeeluke]

Castor,

Unfortunately I can not write much now as I have to get ready for work.

If you think you have Lyme then it might be good to read a few books and such. These might be available through a library or some other spot if you are unable to purchase them. The first book is excellent!

Cure Unknown: Inside the Lyme Epidemic

Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections

the movie:

Under Our skin

In addition to a diet change, maybe at some point you could afford to get some herbs and some good quality probiotics. The herb Cat's Claw has helped me out quite a bit (along with 8 months of anitibiotics). Especially the TOA version. You can get it in drops and add it to water. Real easy.

I have done real well on a gluten-free/dairy free diet. Didn't solve anything but makes me feel a whole lot better.

I do believe mold can trigger Lyme. I had a similar situation.

I'll try and write more later on.

Hope things are going ok for you at the moment.

-Luke

[castor]

Hey everybody, I'm still around. Things have just been such a roller coaster and I want off, ha. I've been reading everything everybody posts or links people send me, and also parts of other threads and things online taking in as much info as I can as well as putting things into practice at the same time.

I've been so busy and so much is going on, I just haven't had time to really even reply to anything, but to everybody that has posted and sent me information, thank you, you guys/gals are the only ones that believe there is anything wrong with me other than I'm either 'crazy or lazy', even my family. I got in a fight with my dad yesterday over all of this, him accusing me of starving myself to get attention, and going on about how I must love how everybody is paying attention to me.... Uh... not really, since everybody that is paying attention to me here, is all negative attention. I just want to this stop, go away, get better..... *sigh* It ended with my emotions rocketing and storming out with no coat and walking around the neighborhood in half convulsions (the MS type stuff gets a lot worse when I am upset).

I just want one person on my side here... I'm fighting even my family on getting any help and my two friends here have stopped talking to me as I guess to them I am just looking for something to be wrong and they are sick of me being depressed.

I hadn't post this yet, but I decided after talking with my therapist a week and a half ago, to just leave here, any way I can, some of you have mentioned that I should relocate too, and I've been trying to, when I got really sick over two months ago, it was while I was visiting my sister on 'vacation' trying to relax before going to a new place to live. I got stuck there because of tropical storm Fay (was in Florida) and the stress got really bad, I think triggering the worst of what has been going on after we went to a dance club and I drank. (rarely ever do, first I had more than one drink in a number of years)

So I got very sick, and ended up coming back home here, fighting to get better. Now I'm looking at being homeless soon, and everybody turning their back on me believing the doctors who are saying I am making this up.

I started the SCD diet minus dairy about 10 days ago. My weight has leveled off and I haven't had D since I started! Been hungry though, I'm out of food stamp money and didn't have a lot left to get what I needed.... Going to have to stretch out what I have left. Getting sick of drinking water.

I messed up on the diet three days ago though, it was an idiot moment for me, ha. I got up and was really hungry and in a bit of a fog and got a bowl of cereal and was sitting there eating it and it finally dawned on me, what the heck, I'm not suppose to eat this!!! I since gave all my illegal food to my parents so I don't do that again.

My plan is I am going to write a few churches (I'm Christian) and see if one that does help in communities could help me get a start there, and my parents are going to buy me a train ticket and I'm off. It will be stressful to do, but this place is toxic for me, and can't really get better till I remove myself from a completely dysfunctional family.

I'm eyeing Arizona, have been wanting to go west for a while now, anybody know if there are good doctors in that area? (you don't have to say who, just if there are) Plus it's warmer there, last winter and this fall I've lived in 60-65 degrees to keep my heating bills down, though the cold doesn't bother me too much.

I've been working on all that the last 10 days while trying to get my body in some kind of health so I can move soon enough, looking at in about two weeks.

On top of all of that, the person I talk to everyday and who has been there for me through all this tried to take her life last week........ didn't see that coming.

I got a new herbal tea yesterday and had an allergic reaction to it, ha, now I'm having exploding allergies, great.

I'm still embattled to make a life for myself though. There's so much I want to do yet. I just want the roller coaster of the last 8 years to finally stop. I'm having to stop it on my own though without any support, but if anything I know I've been made strong over the last 8 years and very resourceful. Once I leave here I'm guessing my internet access is going to be pretty sporadic for a while, so that's why I'm trying to collect any information I can now.

Well, I've got some cleaning and laundry to do, starting to go through my stuff of that I am going to take with me.

[land-turtle]

Hi Castor, checking back here on you, really concerned about you, I think that I have it correct that you did test negative for celiac? Well, from everything you have written eating gluten free is still a healthy choice because you sound like you may be allergic to a lot of things and it may be celiac anyway even though you tested negative, you could be iga negative (I think that is what it is called) but anyway it could be a false negative. You have to give the diet a pretty long time before you notice the changes, you are wanting to detox and if you have any gut permeability at all you won't be able to successfully do that. I went to a holistic doctor at first for my arthritis and she diagnosed me with lyme (through Boren) and started me on antibiotics, well I got worse over time, it wasn't until I was diagnosed a celiac and then ate gluten free that I got better, and then I took some more antibiotics and got better. I have heard from other lymies that they became celiacs or were celiacs before the lyme, it's kind of the chicken and the egg, what came first we don't know. Are you eating gluten-free now or just trying to eat healthier, also are you underweight or overweight? I was an overweight celiac, the doctors never considered that I was a celiac because I looked so healthy, ha ha, but I have lost a lot of weight and feel better now. Even as sick as I was my celiac panel came out low positive numbers, so I think that a new test or criteria needs to be developed to catch those before the damage is done.

[land-turtle]

One more thing, I reread the original post and Castor you said that you are losing friends because of the way you talk about lyme and your problems and really not making sense. That sounds so much like me 3 years ago. There is so many similarities it's scary but anyway, I can't stress enough that you need to try eating gluten-free, my mind cleared up, it took a while but as my son said, "mom, it's like I was in a fog". He tested positive for lyme too by the way, but he's doing find now. He also had the problem with a temper, he never had any friends because he would just lose it so often, now he is so easygoing. Take care.

[CarlaB]

There is a very good LLMD in Arizona, I don't have his contact info, but I'll PM you his name.