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Old 06-01-2008, 04:33 AM   #1
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Red face I think I might have Lyme despite neggative tests. I need to desprately find help!

Is there anybody who can help me please?
I have been extremely ill since Sept. 2006 and it is now June of 2008. I am only 25 years old. I have tested negative for everything including Lyme disease but have a strong feeling that It could be the culprit. I have literally been suffering in an unbelievable way mostly stuck in a bed for almost two years. I have been denied the IV treatment twice now and am determined to fight until I am at least given a fair trial. Does anybody know of a good Lyme doctor in or close to Wisconsin. I have no insurance, very little money and can hardly leave my house but I have many reasons to believe it could be Lyme. Does anybody know my rights as far as demanding a trial run of this treatment. I have documented cases of other people who have tested negative in the same state but were eventually given the treatment with success. I have been pushed around for almost two years and can barely find the strength to fight this thing any more and am not buying the whole Chronic Fatigue Syndrome deal in my case. Something is seriously wrong. Any advice or info would be greatly appretiated!!

Last edited by sockit2ya; 06-01-2008 at 04:34 AM.

 
Old 06-01-2008, 03:24 PM   #2
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

sockit2ya-

I was wondering if you had looked into herbs, probiotics and that sort of thing. Something that might take the edge off while you continue to try and get antibiotics and sort through your health (or lack of- definitely can relate). Usually the herbs and probitics can both help to start to get your body back on track so to speak.

I'm just starting to learn about herbs myself, but I think they can be extremely helpful with Lyme and other similar diseases/unknown health problems/etc..

Don't worry I'm not selling anything or whatever, just listing a few things that seem to help me over the last year or two. I don't know if you have heard of any of these during your search for information, but I'll write them down anyway. I know you said money is an issue, I can relate to that as well.

*Book- "Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections" by Stephen Harrod Buhner. Talks about the Lyme bacteria, easy to read, and also talks about different herbs that might be helpful. Has a very comprehensive "works cited" with lots of good scientific journals- basically the book seems to have a good foundation.

*Probiotic- Any of the Klaire Lab Probiotics are pretty good. They are good quality, kept refrigerated, and can usually be found at a local healthfood store. I specifically use their Ther-Biotic Complete: 25 Billion CFUs Multi-Species Probiotic Supplement. 12 different strains of good bacteria in it. Probiotics can be very helpful to your body and your digestive track. Especially if oral antibiotics are involved. Even if you are not on antibiotics, but you think you might have Lyme, there is some benefit to taking one of these puppies every day or every few days.

*Herb- Japanese Knotweed is something I just started with it definitely stirred things up; I think it works well with the antibiotics

*Herb- Cat's Claw, TOA Free- Saventero is a good one to start with, then it might be good to switch to the Nutramedix Samento drops. This one really helps. Figuring out what amount is too much and what is not enough is helpful. This one might make you feel worse before you feel better, like most other things that battle Lyme. Start with a low dose and see how it goes.

*G.T.'s Kombucha- the drink is pretty amazing. I honestly feel like it helps and actually does something. Good while on antibiotics too. A couple sips in between antibiotics definitely helps me, helps my stomach feel better. It's got some things that help you detox a little bit better.

*Food Intolerances- Figure out if you have any food intolernces. Lessen or eliminate those foods, being sure to bring in other foods that can supply those minerals and vitamins etc. I know for a fact I was reacting to gluten/wheat, dairy, simple carbs, refined sugar. For whatever reason avoding these foods as much as possible has helped me.

A little bit about me . . . I'm kind of in limbo right now. Clinically I've been diagnosed by a LLMD in Mass. Had one band show up on a western blot IGG test. Just finishing up a 3 month course of Tetracycline. Haven't felt well for 3 years. Had at least two if not more deer tick bites, no rash, blah blah blah. Wasn't getting too many answers, until seeing a LLMD. Very frustrating to be told "it's all in your head" by primary cares and specialists. 3 negative ELISA screening tests. Kinda like the typical confusing/draining Lyme experience with the medical community.

I'm not a doctor; I've just done a lot of research on my own, like most people who have Lyme/Co-infections, or at least think they have Lyme/co-infections. I guess just do your own reasearch before you try anything. If you try any herbs start very low and see if you have an allergic reaction or whether your Lyme symptoms come back or get better, etc.

good luck. Hopefully you are able to get some antibiotics, even oral ones might help for now, or hopefully at least a partial answer on why you don't feel well.

 
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Old 06-01-2008, 03:50 PM   #3
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

Hi luckeeluke, welcome to the board!

I am sorry you have been sick for so long. No test for Lyme is completely reliable, and results can vary by lab. It is my understanding the ELISA or titer is the least reliable test and the one most doctors run first. It is important to be tested at a Lyme lab such as IgeneX. They use more sensitive testing and list more Lyme specific bands on the Western Blot. Is this where you had your test done?

Were you tested for the co-infections Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? This is important. Many people who have Lyme are co-infected. Being co-infected can affect treatment choice and progress.

Is your doctor planning on treating you for only three months?

 
Old 06-01-2008, 04:45 PM   #4
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

I do not know what your symptoms are, but why do you think that you have Lyme disease? In my opinion, it is "ok" to continue pursuing testing for Lyme (in particular, by Western Blot if you have only had an ELISA test to date), but if you are that sick, you should consider other possible explanations. I worry when people assume that Lyme disease is the only explanation today for pain and sickness. Please make sure that you explore your health issues from several different fronts simultaneously. That is what I am doing now. It just makes sense. It is certainly possible that Lyme is not the culprit, especially if you have a Western Blot done at this point in your illness and it is negative for Lyme. Hope you feel better soon.

 
Old 06-01-2008, 06:06 PM   #5
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

The testing for Lyme is NOT accurate. Beings the bacteria does not like oxygen. It imbeds in tissue, organs, bone, brain...ect. IF you are lucky to get bands pulled up on a Western Blot you are lucky. IF you get the bulls eye rash then you are one of the few. This bacteria is in the syphillis family and is the second fastest growing disease there is under Aids. Some say it is the fastest. You don't have to be bit by ticks to get Lyme it can be transferred other ways.

Majority of doctor will turn their noses up at people and say they have some other condition when technically the proplem is lyme, in alot of cases. I was told I had dementia, alsheimer's, mental retardation, gullian's disease, CFS, Fibro, needed neck surgery, need surgery for carpal tunnel...ect ect...I got to the poing where I wasn't able to use my arms or legs......

If a person has looked into other bacteria's or virus's and can't come up with something. Then I feel lyme woudl be a good avenue to look at.

I have/had Lyme, bartonella, babesia, Chylamydia Pnumonaie, High off the chart titers for Epstein Barr, Cytomeglovirus. The only thing that came up positive for me was ....Chlamydia Pnumonaie, EBV and CMV....The TWO doctors that I found out of 20 years that went on my symptoms and not any test saved my life.

Jodie

Last edited by moderator2; 06-01-2008 at 08:41 PM. Reason: address your message to the original poster, only

 
Old 06-02-2008, 03:25 AM   #6
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

hey Ticker thank you so much for the help. I am shocked at how quick people respond on here and how willing you are to take the time to help where you can. Thank you for the doctor names and I understand that there is no guarantee with them but it is certainly somewhere for me to start. I know that some people on here or at least one responder was a bit sceptical because I have been so sick for so long. I actually felt extremely ill like if I was being poisoned by something for the first six months atleast. Now I am dealing with more muscle problems and alwys a extreme constant pressure in my head and throat. My symptoms flare up and change over a period of 3-4 monthsnat a time and I have had a sore throat since the begining, I have made over 50 visits to clinics over the last 22 months because my symptoms are so extreme. Thank you for the list of symptoms and after going over your list I have a total of 28 of the 38 symptoms listed. I have been told that there is nothing more that I can be tested for and my blood work is perfect so it wasn't until recently that I realized how many symptoms of Lyme I acually have and how so many peoples stories sound similar in so many ways to mine so I don't see why I shouldn't push for a trial run of the aggressive Lyme therapy just to see if something happens because the way I have been living for the last year and a half is almost unbelievable!

thank you again for your help!

----Jesse

Last edited by moderator2; 06-02-2008 at 05:41 AM. Reason: that huge quote!

 
Old 06-02-2008, 05:05 AM   #7
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

Hi Jesse, I am happy to help.

I also had the feeling of being poisoned. Before getting diagnosed, I remember telling my doctor that I felt like a bug that had been sprayed with Raid but not enough to kill it.

Lyme symptoms can wax/wane and migrate around the body. I think it would be a good idea for you to confirm or rule out Lyme.

Good luck! Keep us posted on your progress, okay?

 
Old 06-02-2008, 03:35 PM   #8
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

Ticker - that is an awesome analogy about the bug sprayed with Raid but not enough to kill it. You're amazing!

Jesse - Hi and welcome.

I remember what it was like to be too sick to fight for yourself. At my worst I was living on my sofa, barely able to move, too sick to brush my teeth or get the mail out of the box. Sometimes I was unresponsive and if someone spoke to me, I would just stare back at them blankly.

Once my daughter made me a bowl of soup. She carried to the sofa and handed it to me.

My eye-hand coordination was messed up and I went to reach for the bowl and missed. It spilled all over my lap, burning the pajamas I had been living in for weeks.

I could not react except to sit there in hot soup and cry.

I've had utility companies come to my door to shut off my service because I was too sick to gather my mail and pay my bills.

I wore sweatpants for days and days on end.

When my kids missed the school bus I just cried. The thought of driving them 3 blocks to school was too much for me to handle.

I taught my kids how to use my debit card so they could grocery shop while I sat in the car and slept.

Hang in there. We've been where you're at. It won't last forever.

A good doctor will treat you based on symptoms, not test results.

Peace and health to you,
Mickie

 
Old 06-02-2008, 03:55 PM   #9
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

Ticker-

I definitely had the metallic taste early on. Had that poisoned/toxic feeling almost all the time for about 2 years. Now it tends to fluctuate more. My "hit by a truck tiredness" is a lot less than it used to be, seeems to come and go too. Sometimes there seems like their is no rhyme or reason. Other times I can definitely see patterns within patterns. One of my wierdest symptoms is the acute smell to chemicals, molds, cigarettes, perfumes, goes on and on. Certain environments/places just mess with me even more and others don't seem to change things one way or another.

My LLMD uses Quest- which I understand is definitely not as good as IgeneX. Right now for me it comes down to money/insurance. My LLMD takes insurance/ uses Quest/ and seems to be treating me anyway, regardless of the fact that only IGG 41K band showed up on IGG Western Blot. Nothing on the IGM.

Since I don't have the cash right now ($200-300), or whatever it is for the IGM and IGG western blot from IgeneX, I plan to get whatever test(s) he might reccommend next. I imagine I will get another set of Quest Western Blots and maybe a few of the co-infection tests based on what he sees from the notes that I have writted down while on antibotics this first time around. Then over the summer I will gather some money for a western blot from IgeneX.

I have been on a 3 month period of Tetracycline 750mg 2xday. This actually ends tomorrow. I'm thinking that I might go back and he'll probably put me on a different combo (for the summer) for another 1-3 months and then see what happens after that. I'll have to see what he says at my appointment on Friday. My guess is that if he does use another antibiotic he'll use Biaxin and Plaquenil for the summer months.




Sockit2ya-

All I can say is at least try to get linked up with a LLMD. In the mean time read as much stuff as you can, until you can't bear to read any more, and then bite the bullet and read some more . Scientific journal articles, personal experiences/stories of people, holistic ways of helping the body- herbs, meditation, excercise, eating healthier, food elimintation/diets etc.

My attention span is way better than it was and my fog in the brain is less, headaches come and go instead or being every day all day and constant, it's easier for me to read stuff now and understand it. Where as before I didn't want to read anything/couldn't really process stuff mentally, let alone do much of anything.

Try and get some more testing and get a few visits with an LLMD, or any doctor that will listen to you and take some action or be proactive.

 
Old 06-02-2008, 11:23 PM   #10
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

HEY Ticker,

Thanks again for the help! I Love U for caring so much!

One of my symptoms that I am 100% positive that it is linked to this illness is that darn mettallic taste. I had it on and of for months but it as sort of faded out now but it was certainly there. I just told my GI Doc. about it 2 months ago and she just looked at me puzzled. I know there are alot of people out there who get it who aren't ill like me but whatever it was there was no mistaking it when it would come.

Thanks again for the info and not to bother you but one more question...Do you have any estimate of what it might cost just to visit a LLMD once and explain my sittuation. If you have any answer don'y worry about how accurrate it might be. Just any rough estimate might be helpful.

Take Care of yorself and I'm glad U are not suffering as bad as you once were at least that's my understanding of what you wrote this time.

Bye Bye for now :-)

Last edited by moderator2; 06-03-2008 at 05:57 AM. Reason: unnecessary quote

 
Old 06-02-2008, 11:40 PM   #11
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

Hello my friend,

thanks for the story!! It is so encouraging to hear for someone suffering as bad as me and I am very hessitant to compare my sickness to someone elses because although I can't imagine other people living as bad off as me and having no explanation and little help but with all of the storries that I am now hearing I AM OBVIOSLY NOT THE ONLY ONE. I said all that because I wanted to say it's unbelieveable how simalar what you descibe is so like what I am living. One qustion...did You have Lyme or no?

Thanks again for your story! I am going to print it 4 me and 4 those like my mother who had to take me back in because I lost my appartment. She believes I am sick but gets frustrated because she can't understand and fells that I should be able to do more than I can do. I really am as messed up as I say and there's nothing worse than having your own family doubt you in the middle of it all. I want a healthy life back more than they will ever know. I have cried more in the last two years than probably the rest of my life combined so again thank you 4 your support!!

Be well and take care,

-----Jesse

 
Old 06-02-2008, 11:44 PM   #12
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

hey jodie,

Thanks so much for the help it is greatly appreciated!!!!

Take care,

----Jesse

 
Old 06-03-2008, 12:16 AM   #13
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

Hey brown bear,

Look my friend the reason I think I might possibly have Lyme is.... 1. Everything else according to the 60 some doctors visits in the last 22 months, has been ruled out.

2.What I am dealing with is bad enough as far as the suffering goes that there are times were I could just end it all my self but wont, but what I'm talking about I guarantee no doctor no matter how tough would be making it to work if they had it like I have it and I am certain they would have been frightened many days for their life.

3. When I got sick initually I was working in areas that had to contain some ticks, one area being a nature preserve and I even developed a small circular rash the same time i became ill but had such worse problems that whatever the little rash was I just never thought to show it to the doc.

4. I do know that many of the symptoms that Lyme can cause could be from somethin else, out of the 70 or so symptoms I have rcorded as a possibility of Lyme I have had almost 60.

5th. Yes I have been tested but for one thing 2 out of the 3 times I was on antibiotics wich supposedly could alter the test and also I don't even yet know what testing was actually done or where it was sent. I am going to find that out soon I hope.

I certainly understand that Lyme could not be the culprit but after being to the doctor as many times as I have and just to say anybody who goes to the doctor as many times as I have and is not a hypocondriac must be really suffering! I even had my tonsils and adnoids out in july of 07' because of the never ending sore throat and they were apparently not the cause of anything and damn that was some pain. I am more edjucated than you probably think and to be as messed up as I am and to see my body do things I would never imagined possible I am too the point where I am willing to try anything that is out there that might be a possible fix and the only thing left, the only thing I have not been really treated for is Lyme and it just happens to be the one thing that fits over any other illness that I have checked into. If you were at the point that I am for as long as I have been you might see things alittle bit more my way.

Certainly thoug I can understand your hessitation in jumping to cunclusions that it is just Lyme. Hopefully you can understand a bit better my reasoning and I do thank you for your concern!!

I did not write this to just throw things in your face cuz you asked but instead just to maybe help you better understand where I am coming from.

Feel free to write back and express your thoughts!

Take care!

 
Old 06-03-2008, 12:28 AM   #14
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

I don't know if I have been treeted for babsia or te other ones because it wasn't until a little over a month ago that I realized I possibly could be onto something with Lyme disease and the reason for that is I did not think a chronic sore throat could be a symtom so It is the one thing I just kind of discarde as a possibility.

And about the doctor treating me three months----I was given one month of 200mgs of dyoxycyciline for 30 days and told that that should do it. what a joke and I have lot's of stories to say what a joke. Then I talked to her about thIV therapy and she basically told me we would give it a try only to go back on her word 3 days later.

 
Old 06-03-2008, 03:38 AM   #15
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Re: I think I might have Lyme despite neggative tests. I need to desprately find help

Quote:
Originally Posted by sockit2ya View Post
Hello my friend,

there's nothing worse than having your own family doubt you in the middle of it all. -----Jesse
x2 on this one. This is one of the most frustrating aspects aside from not feeling well. Family, friends, doctors, etc. "oh but you look fine." The other thing that seems to be coming up more recently is my family seems frustrated with how long it will take with the antibiotics. Everyone thinks it will be better fast. Take a week of antibiotics and your done. wrong. Seems to be so much of a back and forth thing and a slow process.

I really think Lyme hits people differently too. I think people have different symptoms at different times and it makes it hard to understand what the heck is going on. It seems like most people have their own core set of symptoms that seems to come and go and come back, and other symptoms that are more fleeting/onetime or fewtimers. Lyme is not good for anyone, but I think some people do have more of a bacterial load and their symptoms are extremley intense, where as some folks might be more in the middle. It all depends, nothing seems cut and dry.

I don't know for sure the cost of a visit without insurance for my particular LLMD. I have "heard" it's around $125- which is on the cheaper side for an LLMD I guess. My guess is that LLMDs are around $100-$300 for a visit, I dunno really know though. So don't take my word for it.

Artemisinin is a good thing to research for babesia, if you suspect it. Like with anything you have to be careful what you take. Back during the wintertime I tried one 200mg Artemisinin per day for three days. All I can say is it destroyed something, I felt like I had a flu with fever and sore throat that was 10x worse than I was already feeling. Lasted for a few days to a week. I eneded up being all constipated for a long time- I think something died a bit and released off a bunch of toxins. I haven't made my mind up to try them again yet. I imagine it was a babesia herx, but I don't really know. I don't think it was a reaction to the artemisinin.

Last edited by luckeeluke; 06-03-2008 at 03:52 AM.

 
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