posted
This is probably the wrong place to ask this, and I don't want to start a riot, but it seems like there is an awful lot of people who have Lyme disease. Isn't that a bit strange? I mean, can it really be that rampant? I'm just asking...it is just an observation. I guess I am still questionning my own diagnosis. The literature is all over the map on this disease and it is hard to know what to believe. Doctors associated with diagnosing and treating Lyme are having their licenses taken away, labs doing Lyme tests are being investigated as having too many false positives, etc. I don't know what to think!
Posts: 331 | From virginia | Registered: Nov 2005
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I can definately relate to ur concern about your unsure diganoises. Here's the thing-if your test results come back inconclusive (like mine aka neither pos or neg)then you really need to trust ur docs judgement. Lyme is a clinical test not just blood work.
I remember when I found out I was devistated-like wow I have a disease! Then I started to think there was no way i could have lyme-i never had ne of the signs and I was convinced that I had a food allergy. However, after being on meds for 2 weeks my chronic hives and vommiting of 8 monthes magically stopped. I didn't believe it was due to the lyme treatment though-I thought what a coinsidence. I joined lymenet in oct and have been reading through many people stories that are so similar to mine. I have done a lot of my own research and seen my doc several times (she happens to be a LLMD)to discuss all my concerns.
Do I think I have lyme-ABSOLUTELY! There are so many things that I have experience and looking back I don't know how my doc could have let it go on this long. I just thought wow I must be getting old or blamed symptoms on side effects of meds. The truth is that lyme disease is a rough disease to have, but the good news it's cureable.
I am 21 years old and have learned that I have to fight for my health. Maybe you don't have lyme. Only you know ur body. Also the meds should make u herx, so if you don't then maybe you don't have it.
I don't know too much about ur situation and i am not a doctor so I can't tell too much-but they think i have gone undiagnoised for over 10 years. Hence I have A LOT of experience with health problems. Let me know if you wish u speak more and good luck!
-Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
Actually my IgM was positive per the CDC standards (all three bands were present)...my IgG was negative because I had 3 of the five bands and IND on one (I needed five). My main symptoms after starting abx was a stiff and sore neck, sore muscles, fatigue and sore joints. I have no idea if it is herxing or not. HOWEVER, before I knew of the idea of herxing, I called my doctor and asked him, "Is it possible that these abx are actually making my symptoms WORSE?!?!?" I have a lot of neuro and muscle symptoms and they got a bunch worse all of a sudden. He called back and told me about Herxing and thought it may be due to that. I am on 500mg of Biaxin and 300mg of Omnicef twice a day. I have cut back to once a day to see if that helps. I don't know what to think...I have been on abx for about 20 days and I don't see much improvement yet. When would I see such improvement? This is why I am a bit skeptical and I don't want to do months of abx if it isn't Lyme!!
Posts: 331 | From virginia | Registered: Nov 2005
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WildCondor
Unregistered
posted
it sounds like you need to educate yourself more on this disease. I suggest you spend a lot of time researching the disease and related co-infections. Lyme disease is spreading faster than AIDS. The CDC criteria are worthless. Just mentioning them is a red flag that you have not been getting the correct information. Lyme disease is a Clinical dianosis. It does not matter what the tests say at all. Please spend some time reading lymenet.
Here are some other good links, and please check out tree patrols links at the top of this forum.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
Yes, there are many people with Lyme.
The obvious reason you see it here is because this is a Lyme Message board.
Beyond that, though, I've heard from numerous sources that the number of cases of actual Lyme Disease is as much as 10 times the number of cases reported to the CDC.
At the Hearing on Lyme in Boston this past October, the MA State Epidemiologist reported a 5-fold increase in reported Lyme cases w/in the last several years, in the state of MA alone.
When I participated in a Lyme Disease legislative campaign in the state of Maryland, my congressman wrote back to me that he knew it occurred in Maryland, but by the *overwhelming* response he got he had NO IDEA that it was so widespread a problem!
You get competing stories because Lyme is a politically controversial disease. I think it's fair to say that there is an "academic" camp, largely originated from Yale, who believe out-dated things about Lyme. For example, that it can always be cured by 10-30 days of antibiotic treatment. (Not true). And that it cannot be passed to a child in utero. (Also not true). And that it is "hard to get and easy to cure." Also not true.
The "out-dated" camp is backed by insurance companies, who do not want longer treatments dictated as mandatory, because longer treatment is MUCH more expensive for the insurance companies.
Also, it's probably fair to say that the "out-dated" ideas are still around because there are academics whose reputations and research dollars depend on being right about them.
As the clinical and scientific evidence mounts that they are wrong, the "out-dated" academics do create attacks on physicians who treat Lyme more aggressively.
At one time, they may have been right: perhaps the Lyme bacteria was once much less intractible than it is now.
But now, BOTH the clinical and scientific evidence is mounting that this bug is far more complex than what was originally thought.
I think it's possible (altho I'm not a scientist) that the Lyme spirochete has changed, adapted to antibiotics, and has shown itself to be so tenacious. We also have many new technological ways to observe and study it.
We also know that the blood tests for Lyme are unreliable. That is precisely why the Lyme vaccine was pulled off the market a few years ago: with no reliable tests, there was no way to measure the efficacy of the vaccine.
See the ILADS website for the many reasons a Lyme test may be falsely negative: the test only looks for antibodies to the bacteria, and your body, for any number of reasons, may not be producing antibodies. There is no test on the market that can see the bacteria. The labs that are researching this get attacked by the "out-of-daters" too. The "out-of-daters" are being proved wrong in clinical settings and in studies, and they are fighting back.
I had tick bites but never remembered a rash. I also didn't present with the typical arthritic symptoms, but with more neurological ones. The many specialists I saw called it "Chronic Fatigue Syndrome," even as they acknowledged that term basically means "We don't know what you have." They could do nothing for me, and I stayed sick.
Then, on antibiotic treatment, I began "herxing" -- that's when the antibiotics make you feel much worse. A person who does NOT have Lyme will not feel worse on antibiotics. Someone with something else will not be affected by the antibiotics. If you have increased symptoms on the antibiotics, and it isn't specifically side effects from the abx (like nausea), there is an awfully good chance it's Lyme.
After the Herx, improvement.
Syphilis, another spirochete bacteria, operates the same way. We know now that there is more similarity between syphilis and Lyme than was previously thought.
We are in a period of clinicians and researchers understanding a great deal more about this disease. But the old-fashioned "out of daters" are hanging on tenaciously to their old fashioned views because their careers and research money are threatened by the new research. One might even wonder if a degree of pride is involved. They are being proven wrong.
It is so hard for someone to learn first of all that they have a disease -- and second that there is so much contention in the medical community about that very disease! The politics around Lyme are worse than the politics in Washington, DC!
But that is no reason to give up hope! Stay with the doctors who are on the edge of the research. Listen to your body and speak up if you are having questions.
Know that we are learning more about this bacteria every day.
There is a thread called "Success Stories" if you start getting down. You CAN get better!
Hope I've helped a little.
Keep asking questions.
My warmest wishes to feel better very soon!
[ 03. December 2005, 12:00 AM: Message edited by: henson2 ]
Posts: 1067 | From East Coast | Registered: Dec 2000
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Great post, Henson; thank you!
Unlike you, I did remember a rash -- back in 1996 -- and was treated then with 10 days of abx.
I never connected the weird medical things that began occuring over the next 9 years. Neither did any of my 12 specialists or my GP.
It was my acupuncturist who suggested something more systemic and asked me to investigate Lyme and Lupus. As soon as I read the symptoms for both, I knew -- beyond any shadow of a doubt, I was certain I had Lyme.
My tests did turn out CDC positive -- at least one of them. And I've certainly had what I imagine are pretty severe herxes. I'm also getting gradually, slowly better.
But while I didn't doubt my own diagnosis, I had a really difficult time comprehending all the medical controversy surrounding this disease. Prior to being sick, I'd been a journalist and at one time I had written extensively about AIDS for several national publications. I had not heard anything at all about Lyme...so this all caught me by surprise.
In a lot of ways, I'm still trying to make sense out of it. All I know for certain now is that it's a nasty nasty fight, and there are a lot of lives hanging in the balance. Mine included.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Its That Rampant!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Morning VAchick-
Welcome, yes lyme and related tick borne diseases are rampant. Our llmd currently tests for about 7-8. I have tested positive for 4, my husband 3 and my son 2.
False positives are unlikely. If the DNA is found, the beasts have to be in our bodies, the same is true for antibody tests. Antibodies are made as a reaction, if that something isn't there the reaction won't happen. If your immune system is overwhelmed your body may not make antibodies and you could have a false negitive.
If you took a poll you would find the vast majority of the folks here have some positive bloodwork to support their symptom list.
It remains a mystery to most of us, we have our theories, as to why there is not more media attention and government recognition of these infections. I have had friends ask me the same questions as you have posted here. They accept diagnosis of MS, Lupus, chronic fatigue and many other diseases that have the symptoms managed without out exploring the underlying cause and solving the problem.
The folks here want to get well and are unwilling to take steriods and pain killers for the rest of their lives without exploring every path to wellness.
Do know one thing. Lyme can kill you. It can be slowly or it can go to your heart or other vital organ and be quick. The key is to get good long term treatment before you have perminate damage.
You also have to know that we were/are healthy active, productive people that have gotten sick. We want to be well more than anything else. We are here looking for answers. Our children haven't given up an active life to spend their time sick in bed and home taught by choice.
I see I'm not spelling too well today, that's life-
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
vachick
Wow! Henson organized the lyme history/controversy so well in his post.
So many neighbors in my suburban northern VA neighborhood have had rashes from tick bites and/or symptoms.
My son and I removed adult ticks last winter. No rash developed......just odd symptoms. When I took my son to one of the ID docs who attended the Hope to Heal conference.....after telling him about my 19 year old's unexplained fatigue/weight loss and strange eye twitching......he turned to him and said "Nobody likes a whiner." (My son had been on abx immediately for 6 weeks but our PCP did not believe these symptoms were lyme so I had to find someone who could see him and connect the dots. I picked a doctor who I saw at that conference & what an awful doctor experience that was!!!)
My other son most likely was infected 6 years ago during one of his nighttime neighborhood paintball games. It took 3 years of going from specialist to specialist to finally be told to have Igenex lyme testing. Early on our PCP had told us all of his bloodwork was fine including a test for lyme so we never investigated lyme any further.
I look around me and see a neighbor's daughter - a young mother - who lives with unexplained stomach problems and has been in the ER twice in the last year. Another neighbor's graduate school daughter has unexplained pain and is seeing a physical therapist and after six weeks it is not helping. A middle school boy lives with daily headaches and anxiety for ten months now. His mom has arthritis symptoms and has just been told she has fifth disease. My best friend's daughter had five bulls eye rashes in May and she is experiencing chest problems. The real horror is that only she was treated.... but only for a month.
When will the PCP's recognize these symptoms? Until they do my neighbors will not consider lyme unless there is a rash......and that's because they put their faith in their doctors recognizing lyme.
I believe lyme is prevalent in my neighborhood and that there will be unnecessary suffering for many families. But my husband's foot problems - eye problems - air hunger - vertigo - tinnitus - chest pain (didn't come on him all at once... started when we lived in the Philly suburbs)..... These symptoms all point to lyme and never did his primary doctor of 7 years connect those dots. Thank goodness he has agreed to testing & is scheduled to see our llmd this January.
I recount all of this, vachick, because this disease is so damn puzzling and no two people's symptoms are the same. What a smart, tricky germ......fooling so many......and for how long?
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Thank you all for your wonderful thoughts. I hope you did not take my question as questionning anyone's diagnosis or that Lyme exists. I am struggling (and have been for years) with many unexplained symptoms and literally have seen multiple gastroenterologists, internists and neurologists. I have contemplated suicide. My friends and family think I am a total hypochondriac. I just recently started having very scary neuro symptoms...I am very weak on one side of my body. My muscle are twitching and jerking like crazy...I can't exercise without severe muscle fatigue/weakness. I am falling down and am now limping due to weakness in my right leg. I have feared ALS for a long time...I totally have the symptoms. I now have a sore tongue, stiff neck, swallowing trouble and excess saliva. Sounds like ALS to me!
I am sure you all know how completely terrifying this is. I am supposed to be married next year and I am actually wondering if I will be able to walk down the aisle due to my quick decline. I am also starting to plan my funeral and how to say goodbye to the people I love. I don't know what is happening to me and I feel like I am dying. I don't know if this is Lyme or not, but I do know that I can't live like this. I am just trying to get to an answer.
Should I get a second opinion on this Lyme thing? My internist says I have chronic Lyme but where should I go to get a second opinion? I am worried that LLMDs will be biased to say I have Lyme when I don't. Meanwhile my muscles are wasting away daily and I feel like I won't see my wedding day. There is no icon for crying or I would put it here...
Posts: 331 | From virginia | Registered: Nov 2005
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posted
Vachick, My vet told me that 1 in 4 pets in their practice are testing positive for lyme. According to the National Capitol Lyme Disease Association, the area extending from Herndon to Leesburg, VA is a "hot spot". I too find it hard to believe that so many people could be bitten by ticks; but I believe that everyone in my family has discovered the more common tick ready to dine on them at one time or another. No reason to assume that the tinier deer tick hasn't been a "guest" at some point as well. After all, it is considered a potential agent for bioterrorism, according to the CDC and NIH! Sounds like something that might be "EASY to catch and HARD to treat".
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
Vachick, you sound exactly like my husband. He has never believed he has LD despite equivocal tests, loads of symptoms, an ID Consultant who says he is 90% certain it is LD, negative tests for everything else under the sun, etc, etc, etc.
Despite that, I have persuaded him to try IV antibiotics - today was Day 16. He too is feeling worse - more pain and some symptoms re-appearing after being gone for months. I absolutely firmly believe he has LD - and I equally firmly believe that treatment will make him better.
Finally, I also absolutely firmly believe there are thousands of people across the world suffering chronic ill health due to undiagnosed infectious diseases - only a fraction of them post on this site.
posted
Did you get diagnosised and tested by a LLMD. You said you were diagnosised with Lyme. Some Lyme Doctors and researchers now believe that ALS is the end result of Lyme. I don't know if that is true but I do believe the diseases with the unknown causes i.e. ALS, Lupus, MS, Parkinsons, Alzeheimers are all caused by pathogens whether it be virus, mycoplasma, or spirochette bacteria.
You mentioned there seem to be a lot of people with Lyme. Like someone mentioned earlier the recorded cases or Lyme are second only to HIV. As one former researcher of the CDC believes Lyme to be underreported by as much as 200%. I, like many people here, would agree one of the reasons there are so many cases is because ticks aren't the only vectors for Lyme.
Posts: 649 | From United States | Registered: Dec 2003
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posted
I don't know if my doc is an LLMD but he was the one who did not believe the Elisa and sent my blood to Igenex. I had a positive IgM (all three CDC bands were positive plus several more) but a negative IgG (I was not positive for all five bands just three with an IND on one). I did, however, have a very low CD-57 which my doc says indicates that something has compromised my immune system, like Lyme.
I am currently on 500 mg of Biaxin and 300 mg of Omnicef. I am supposed to take them twice daily but my muscle pain and stiff neck get almost unbearable. In fact I have cut back to once a day and the stiff neck continues to plague me. The fatigue and brain fog is pretty bad, too. I honestly feel like I could lay down and die. I seem to deteriorate almost daily. I can't even take walks with my fiance anymore...my leg is too weak.
I will be tested for the co-infections in about three weeks. Any advice? I am at my wit's end with this stuff. When am I supposed to start feeling better if I do have Lyme? I know I will get chastised for asking this, but should I go to an ID doc for confirmation? Posts: 331 | From virginia | Registered: Nov 2005
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When I first was diagnosed, I had a rash and very positive test results. As time went on, I started to doubt my infection.
Now, I know I have Lyme and all the coinfections that I've been diagnosed with and am being treated for. There are a whole bunch of other tests and supporting evidence to this.
I too wanted to kill myself and thought I was dying. I'm a whole lot better now!
Why not follow the Lyme path? It's a heck of a lot easier than going down the ALS path.
I found that when I first started treatment, a few of my symptoms went away while others got worse with the herxing. It seems that there are others that find this as well.
Luckily, some of the ones that I hated the most were the ones that went away first. For the most part, the ones that came later on, leave sooner. Last in, first out if you will.
Hope this helps,
Corgilla
PS Please note the way I spaced the "paragraphs". A lot of Lymies have a hard time reading things when the words are all bunched in to one paragraph.
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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Although I am a newer member I understand how you feel. Over the past few years I have had strange neuro symptoms and recently I was diagnosed with lyme. At times I get so worked up over things that I feel like I just can't make it.
The emotional part of dealing with feeling unhealthy can be really hard sometimes. I wondered how I would get through my own wedding 2 years ago because of the strange symptoms I started getting 3 years ago. I saw a couple psychologists and continue with accupuncture today to try to relax and learn to handle things better.
I have no idea how long it takes to get better from lyme (although I hope not too long!) but if you look at things over a long enough time things generally will improve. Pardon the silly analogy but I look at life like the stock market...we all have our ups and downs and sometime we hit very low lows, but the trend over time is an upward direction.
I think that you should do what's necessary to calm your nerves. When things seem to spin out of control and you feel like the whole world is upside down it's hard to "snap out of it". It sounds like you have lyme and you certainly have a myriad of symptoms so seeing someone who is a lyme specialist is probably a good idea.
It sounded like you are confused as to whether all your symptoms are necessarily related to lyme? I guess there's no way be 100% sure that they are (as far as I know) but there are tests that can be done to rule other things out. I know that people here may disagree, but you might want to see a neurologist if the muscle and neuro symptoms continue to bother you. Some neurologists that I've dealt with are not only pretty good at diagnosing but also good listeners. The other option is to speak to your primary care doctor (if you have one) and see if he/she has any recommendations.
I know it sucks to feel badly but hang in there...
--David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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Davidx, I am seeing a neurologist and just had an EMG that came out okay. My MRI was okay, too. aargh.
I made the mistake of reading the CDC website to understand their stance on Lyme. Wow...I am NOT positive based on their criteria. Plus they seem to be very down on Igenex and ILADS. Again, confusion reigns.
Posts: 331 | From virginia | Registered: Nov 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
No need for a second opinion. You have positive bloodwork.
Why don't you start another thread asking for ways to easy the pain of herxing and how folks manage the pain.
My son and I are both herxing today so I don't really have the energy at this momment to write more. I need a nap.
I hear your frustration of dealing with symptoms for many years and not finding a diagnosis until recently. My best friend had a similar experience. She is angry that it went undetected for so long.
JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
quote:Originally posted by vachick: Again, thank you all for your responses.
Davidx, I am seeing a neurologist and just had an EMG that came out okay. My MRI was okay, too. aargh.
I made the mistake of reading the CDC website to understand their stance on Lyme. Wow...I am NOT positive based on their criteria. Plus they seem to be very down on Igenex and ILADS. Again, confusion reigns.
If you read the CDC website, then you would have seen where they said Lyme disease is a CLINICAL DIAGNOSIS. Enough said. You know why they say that? Because they know that the tests available are not accurate.
posted
I have read that the IgM is more important as a sign of lyme than the IgG. I know how you feel; I have been there. Keep doing the research and taking the abx and asking questions. You will eventually feel better. I can hardly believe I am alive.
tj
-------------------- tj Posts: 296 | From Portland, OR | Registered: Jun 2003
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posted
Hi VAChick. I'm in VA too - Falls Church. Anyway, I'm new to the discussion board and I keep reading about this 'herxing' - what is it?
Posts: 6 | From Virginia | Registered: Dec 2005
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posted
Your symtoms are very similar to mine. I started with muscle twitching and cramping, which lasted over a year. When symptoms got worse I went to my gp and he treated me with doxy for 1 month. I felt great, he sent me on my way and 2 months later I was back in his office. He sent me to a llmd. I have been on a # of abxs since then, all oral, and have had constant muscle twitching, extreme neck pain and a host of other symptoms. I have improved, but not without my fair share of herxing. I also called the dr the first time on abx asking if it was possible that my symptoms were worse. Hang in there, they will get better. BUT it is a very slow process.
Posts: 69 | Registered: Jun 2005
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