posted
Hi all. As I wrote in my last post. I just got diagnosed with late stage lyme 2 months ago after being diagnosed with chronic fatigue syndrome/fibromyalgia for 10 years. The more I read about lyme, I more I feel it is an accurate diagnosis, but there is still such doubt in my mind because CFS causes almost all the same things, as does systemic yeast and heavy metal toxicity, all of which I have. I know many people don't believe in CFS or think it is caused by something else, but I just pray they made the right diagnosis of Lyme (although I have had a worsening of symptoms on the antibiotics). For every dr that says I have lyme (my LLMD and my neuro), there are about 10 that say "it's CFS and lyme might be only a little part of your problem", so I am very confused. I just had a spec scan that showed severe global hypoperfusion. My LLMD said it is commonly seen in lyme. Another dr told me they see this in CFS too.
Has anyone ever questioned the lyme diagnosis? or has anyone ever questioned if lyme is the entire picture and not other things causing their problems?? I was diagnosed with active epstein barr, systemic yeast, heavy metal toxicity, among other viral infections, and mycoplasma (which is also seen in CFS). The LLMD seems to think that Lyme causes this cascade of symptoms by lowering the immune system. My other dr (who strongly beliebes in CFS) thinks that lyme is just a small part of what is going on and the other problems must be treated simultaneously. He is cautioning me about attributing all my symptoms to lyme and being treated with long term antibiotics unncessarily. I am so confused.
Anyone else felt this way or have had these symptoms along with the lyme???
-------------------- "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of the doctors I shot when they said "You're perfectly healthy, It's all in your head"
Hope and healing, Nancy Posts: 26 | From originally from NY- now living in AZ | Registered: Nov 2005
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posted
Originally posted by intoxincated: "My other dr (who strongly beliebes in CFS) thinks that lyme is just a small part of what is going on and the other problems must be treated simultaneously."
...plus...
"He is cautioning me about attributing all my symptoms to lyme and being treated with long term antibiotics unncessarily. I am so confused."
...equal non sequitor logic....
Does he suggest any other way to treat the lyme part of your condition?
Frankly I've not met a lymie who hasn't at one time or other been fully convinced they have something else.
Even though/if you have these other "things", lyme can be wholly responsible for all your symptoms.
Posts: 294 | From nevada | Registered: Sep 2005
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posted
Since most of the population have inactive viruses like EBV, CMV, etc., what do you think makes them active?
I believe its the lyme. Lyme is devestating to the body. It almost completely destroys the immune system which will then cause the inactive viruses to become active.
Chronic Fatigue isn't really a diagnosis, its a syndrome which means something is causing it --- lyme, viruses, toxins.
Go with your LLMD, he knows what he's talking about.
posted
well put. i question the diagnosis all the time, and i'm not in "the beginning" anymore. much of the time i think lyme disease is a bunch of b.s. and i'm a sucker for buying it. but what can you do? treat what you find, see if different treatments help, and try to move forward...
you've identified a list of problems--yeast, metals, etc. just start chippin' away at them, and maybe one day you'll feel better. maybe not, but what's the alternative?
Posts: 204 | Registered: Jan 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
From my own experience and that of my husband, your doctor who says that the problems are caused by many factors, infections, multiple toxicities, is so right. Be glad you have him/her and work on that basis.
That's how we got well - by treating all. Read "Lyme Disease: A Look Beyond Antibiotics" - on www.neuraltherapy.com. We were treated by the writer of this article, on that basis, and it was extremely successful. You may want to read some of my posts. Just do a search here.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
About 1 1/2 years before I was diagnosed with lyme - the other ducks said I hade fibro also. My LLMD does not believe in firbo as a diagnosis - there is something that is causing the symtoms. I also was diagnosed by the ducks as having EBV. Upon 2 series of testing for lyme (WB) all coinfection plus mycoplasma M. We found that I had all of these. The fact that I had co-infections that came back positive and then with another testing after partial treatement, my levels actually became higher. Where would I have gotten all of this - I do have history of a couple of tice bits but never thought anything of it. Those were a number of years ago. From my personal experience, I think tat the myco has been a very hard co-infection to get rid of in my case. Myco can be found also in a lot of underlining cases of fibro. I would also have this checked out too. Just my opinion, for what it's worth.
Posts: 582 | From milwaukee wi | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
For what's it is worth I was first diagnosised with CFIDS also.I had CMV and Epstein barr too.
Fast forward 7 years later and alot of suffering I got a lyme diagnosis.Had 5/12 weeks Iv with 9 years of 200mg doxy a day and was 80% better.
I would say I lived a fairly normal and happy life for nine years.
I think that for me this was highly diagnostic.If I had CFIDS I wouldn't have gotten so much better for so long.Relasped three years ago.Re-treated and am doing better.
I think unless you try ABX you may never know.
People are given Abx for acne without to many side effects for years.
I don't know why doctors when it comes to a disease like lyme,which if chronic could lay waste to our lives are so with holding of ABX.
Just my humble opinion.
take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Dr. Burrascano has noted this in a large percentage of Lyme patients. They all doubt their diagnosis. The patients think there is something else underlying the Lyme. Most think it is impending doom and think they are going to die atleast early on in diagnosis. I think these are all legitimate concerns of someone who has just been diagnosised with a terrible disease. I believe it may go along with the old Denile, Depression, and Acceptance thoughts.
I agree with karatelady chronic fatigue syndrome/fibromyalgia are syndromes or more likely a serious of symptoms brought on by something else namely a immune system disease. I believe they were b.s. names given to problems that the quacks either didn't really know or didn't want to diagnosis.
I bet if you treat the Lyme aggressively you will see that many of those Fibro and CFS symptoms will disappear as well.
Posts: 649 | From United States | Registered: Dec 2003
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posted
Hey Intoxincated I am right there with you. I have all three viruses EBV, CMV, and HHV-6. I was told CFS and fibromyalgia. Lyme makes better since for the fact that no one in my family tree has ever had the problems I have. I am an outdoors freak, everyone else in my family is an AC junkies.
At the moment I am seeing a well respected LLMD in Dr.J but after many negitive lyme test and 6 months of abx, with no chnge in the way I feel, I am beginning to feel like a sucker. Idid however, test pos to babesia. That said I still am not comfortable because at the bottom it states the test is not yet approved. They are making huge amounts of money and are moving into a new state of the art building. That is all good, but I have been a patient for 6 months and have been there 8 times and I feel no differant.
A high amount of people with CFIDS/FM do get better withen the first 4 years. Maybe the success stories that LLMD's have could be cfs patients that were going to get better anyway. The poster before me mentioned that a lot of people with acne take doxy fo long periods, funny thing is that a lot of these people taken doxy for acne end up with cfs. Maybe all those people who did really have lyme are know ill with cfs due to taking huge amounts of abx. I really hope that several years down the road they dont find that abx is the cause of cfs/fm. If so I will be ill the rest of my life.
I hope that what I have said does not upset anyone, I am just trying to be open minded about this. It is our bodies they are dealing with. A llmd is not a god, they can be wrong too.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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I appreciate your comments... Only thing I wanted to add was that I know many people with "CFIDS/FM" who have been sick WAY over 4 years and nothing is helping them, so do they have lyme?? Who knows... I have gotten worse from the antibiotics in some ways and better in others.
Gigi-
I have read the article by Klinghart and I think he is SOOOO right about what he says.... I believe that chronic lyme disease is associated w/ manyother infections, viruses, yeast, etc.... and that many people don't get better simply though antibiotics. I have an appt with my LLMD in a few weeks and this was what Iwas planning to speak to him about. I do not doubt I have borrellia infection or "lyme disease", however, what I question is how much of my symptoms are caused by the lyme itself or by the other things I have associated w/ it. Dr. Klinghart is right on with everything, I believe. Too bad I am so far from him!!!!! One thing I DO know is that whatever infection I have, it has now affected my brain severely, as shown on my brain Spect scan and my SEVERE and frightening brain fog.
-------------------- "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of the doctors I shot when they said "You're perfectly healthy, It's all in your head"
Hope and healing, Nancy Posts: 26 | From originally from NY- now living in AZ | Registered: Nov 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I question my diagnosis all the time!!! You hear conflicting stories that say even when your test is positive, you could just have antibodies consistent with a different disorder and not necessarily lyme, etc etc. Are you detoxing for metals?? How does one go about doing that??
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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I have been seeing Dr J. in NC for almost 2 years and aside from one herx about 4 days after abx I haven't had another herx that I know of. I do feel better than 2 years ago I think it is a very slow process. Two years ago I couldn't ride in the car without getting bad motion sickness. I couldn't turn my head past 30degrees to each side without pain and creaking.
Many of my symptoms are gone some still persist; muscle twitches, sore joints on occasion, chest pain and fatigue that come and go.
You can have Lyme with negative tests thats why even the CDC claims it must remain a clinical diagnosis. I am fortunate that I had a few positive Lyme tests including a PCR so I don't really have to play the guessing game. There are a lot more false negatives than false positives. If Dr J. clinically diagnosised you I would have to say it is Lyme even without a positive test he knows Lyme.
Posts: 649 | From United States | Registered: Dec 2003
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posted
I doubted and questioned my Lyme diagnoses when I got it 8 years ago. My first reaction was " but I am WAY to sick to JUST have Lyme" Thats how little I knew about it and I am embarrasssed to say I am from CT!
Anyway, One thing I have learned after all these years is that there is NO other illness out here that can make you THIS sick.
If you have gone years going through every test imaginable and they have all come back Negative except for the predictable " HHV6 EBV" and Heavy Metal, Candida stuff.... Then in my opinion there is nothing else it can be....
These problems such as active EBV or HHB6 will NOT make you this ill alone...... most of the population has these viruses in them as well as heavy metals, and candida....
The problem is when your immune system gets taken down by a horrible bacteria such as Lyme Disease then everything gets reacivated again.
I personally think all those problems are secondary....
For myself It has proven true.... Lyme has alays been and still remains the main culprit in my health issues.... Although I have made slow but very sure progress over my years of treatment.
I truly hope you will see the same. Good Luck and make sure to get to a good LLMD who will give you proper info on Lyme/coinfections and treatment options.
Posts: 437 | Registered: Sep 2004
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posted
I just wanted to add that abx are only PART of the solution. Like some people posted.... You need to do a combination of things to get well.
I have found different alterative methods that work for me as well as being on an antiviral to control my HHV6 activation.
I think abx are a BIG part, but unless you pick up the little pieces that fall down around it then it is hard to get complately well.
Posts: 437 | Registered: Sep 2004
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I also was diagnosed with CFIDS for quite a few years, and told to live with it. I eventually looked to other doctors, I was diagnosed with Fibromyalgia. Then, tested unquestionably positive for Lyme (western blot). I have many other things that constatly pop up- viruses EBV CMV and cold sores almost every month-NMH, neurally mediated hypotension (spelling ?)-Candia overgrowth, esp since 2 years on ABX now- Heavy metals, I had metal fillings, but also test high for lead and very high for copper. I also failed my spec scan.
So, I just figure my immune system is screwed up. Even before my lyme diagnosis I have always felt that it is necessary to keep peeling off as many loads as possible that could affect immune system. Keep going thru and address as much as you can. Address how to keep candida at bay, diet, oregano oil, diflucan, whatever. You need to try and keep the viruses from flaring up, destress, take herbal or prescription antivirals if they start to flare. Gently chelate out metals if you have them.
Before my lyme diagnosis I obtained some relief of symptoms by just cleaning up envronmantal loads. My carpets are gone, I sleep on an organic wool mattress, I fixed roof leaks and ripped out moldy ceilings, put a real venting vent in the bathroom(the old on looked ok from the outside but vented into the ceiling not outside !) and repalced more moldy drywall here. All household products are very clean and pure--ditto for the diet. I took lots of homemade herbal tinctures that were antiviral etc...
Of course, it helped, but I want to get all the way well. So, Im giving western medicine a try. I take my abx like a good girl, take the antivirals when I feel the cold sores about to flare ( my LLMD says I need to fight the virals also, or my system is too overloaded to fight the bacteria) and take the diflucan.... And, I have seen some improvement.
But, I know we arent addressing all the immune system loads. Right now Ive been insisting on further tests to narrow down my copper toxity, unfourtunatelly my LLMD knows zip about metals. But even she agrees that 5x high hair copper, along with low blood whatever-it-was warrants further tests.
Anyway, if your LLMD says you have lyme, you do. I think everyone chronic has other immune syatem loads that keep them from getting well tho. So, you need to keep peeling them away as best you can so you can heal.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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posted
Mountainmoma, what is it that makes an LLMD's word right and no one else? You are saying that the ten Dr's that told me I have CFIDS/FM are wrong and the one LLMD that says I have lyme even though I tested neg. is right!
I am alright with a lyme diagnosis, to me the only differance is there is treatment for lyme where there is none for CFIDS/FM. Until the huge amount of abx I am taking can make me feel normal again, I will consider myself to have CFIDS/FM.
At this point my number one goal is to get my disability. With that I can afford alternative drugs, nicotine patches to quit dipping and the ability to leave my wife, who has been horrible through all of this. My llmd is my best shot at getting disability. So I will stick to the program as long as it takes.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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posted
I was diagnosed with CFS, EBV, and HHV6a for 19 years before I got a Lyme diagnosis. I was in complete shock for along time too. I even doubted the diagnosis for awhile. After I really researched Lyme I think that is what I've always had.
I know how you feel I went through the same feelings. It took awhile to sink in. Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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