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Could it be Lyme?
Over the years I have had positive Lyme screen tests (B. burgdorferi Ab, IgG, IgM) but then the ensuing Western Blot tests to back it up were both negative. The lab indicated that this could mean I have autoimmune disease causing a false-positive Lyme, but my CRP and sed rates are always normal so I was told I could not have autoimmune disease. After quite a while I was referred to an "infectious disease specialist" and that @$#% just sat on his keister and told me (without examining me or doing any tests) that I could not have Lyme disease because it is "not a chronic disease." Meanwhile, I am deteriorating with neurologic symptoms that are like a textbook case of ALS - but the doctors just blow me off. I have muscle wasting, but no joint paint. No pain at all except when my neck muscles get so tired of holding my head up. When I use a neck brace, the pain goes away. I have extreme weakness, fatigue, muscle cramping, weakness in cheeks, mouth, arms, legs, neck. Walk with cane. Falling. Nighttime breathing issues. Choking on saliva sometimes. Etc.
Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions?? If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today). I'm in Utah. Thanks for any insights.
Weakandfalling
Do you think I could still have Lyme despite the negative Western Blots on 2 different occasions?? If so, who do you recommend I see who really knows about Lyme and who actually cares about patients (a rarity today). I'm in Utah. Thanks for any insights.
Weakandfalling
Best Answer
Because there's no definitive test for late stage Borrelia infection, any study like the one described is pretty much worthless. The NIH and CDC and IDSA require that Lyme study subjects test positive on CDC two tiered testing, but very few late stage Lyme patients do. Even fewer late stage neurologic Lyme patients do.
(The usual researchers complain they have trouble finding sufficient test subjects for studies. You'd think that with 300K-500K cases a year, this wouldn't be a problem. Instead of concluding that tests are missing late stage patients, they concluded that late stage infection is very rare. There are very few meaningful studies of late stage Lyme.)
What we need is a definitive test, and a comparison of lifetime rates of Lyme in MS (and ALS and Parkinson's) patients with lifetime rates of Lyme in a control group without these diseases. Then maybe we'd know for a fact if there was a true connection or if it was coincidence.
If the CDC and NIH really wanted answers on these questions, we'd have them already.
(The usual researchers complain they have trouble finding sufficient test subjects for studies. You'd think that with 300K-500K cases a year, this wouldn't be a problem. Instead of concluding that tests are missing late stage patients, they concluded that late stage infection is very rare. There are very few meaningful studies of late stage Lyme.)
What we need is a definitive test, and a comparison of lifetime rates of Lyme in MS (and ALS and Parkinson's) patients with lifetime rates of Lyme in a control group without these diseases. Then maybe we'd know for a fact if there was a true connection or if it was coincidence.
If the CDC and NIH really wanted answers on these questions, we'd have them already.
I did a google search and found a bunch of stuff about Lyme-and-MS. The following is part of an undated post from a website called NationalMSSociety [dot] org:
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"Studies examining Lyme disease & MS
"Two studies have examined the overlap in diagnosis of MS and Lyme disease. The studies were conducted in parts of Long Island, New York, an area where Lyme disease is endemic, or regularly found.
"In the first study, people who had Borrelia antibodies in their blood as well as a variety of neurologic symptoms considered to be “MS-like,” were evaluated with MRI, evoked potentials (EP) and CSF analysis, including a test for the presence of Borrelia antibodies in the spinal fluid.
"While those with the MS-like illness had the highest incidence of abnormal MRIs and were the only ones among those studied to have abnormal EP and oligoclonal bands in their spinal fluid (indicating an abnormal immune response), they did not prove to have any Borrelia antibody in their spinal fluid."
"The researchers concluded that the few patients with the MS-like symptoms probably had these symptoms due to MS and had also been exposed to the Borrelia bacterium."
"A companion study looked for the presence of Borrelia antibodies in the blood of 100 people with the diagnosis of possible MS. Of 89 people who in fact turned out to have definite MS, only one had Borrelia antibodies. The researcher concluded that '…infection with Borrelia is infrequent in MS patients who live in an endemic area. Lyme disease is unlikely to be a significant factor in the differential diagnosis of MS.' Furthermore, the presence or [sic: should be 'of'] antibodies to Borrelia does not prove that Borrelia is causing the neurological symptoms, only that there has been previous infection with the organism."
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Notice that the researchers assumed Lyme bacteria are best found in spinal fluid. From other things I've read, that's not where Lyme bugs like to swim.
It's like the story of the inebriated fellow who was having trouble finding his car keys in the pool of light under the street lamp, and when asked how he was sure that's where he dropped his keys, he said he didn't know where he dropped them, but the light there was better for searching.
In other words, you keep looking where your keys [= Lyme bacteria] aren't, you're not going to find what you're seeking.
I'll leave the parallels to you, dear readers.
There are also other posts online, but didn't have time to read them at the moment.
---------------------------------------------------------------
"Studies examining Lyme disease & MS
"Two studies have examined the overlap in diagnosis of MS and Lyme disease. The studies were conducted in parts of Long Island, New York, an area where Lyme disease is endemic, or regularly found.
"In the first study, people who had Borrelia antibodies in their blood as well as a variety of neurologic symptoms considered to be “MS-like,” were evaluated with MRI, evoked potentials (EP) and CSF analysis, including a test for the presence of Borrelia antibodies in the spinal fluid.
"While those with the MS-like illness had the highest incidence of abnormal MRIs and were the only ones among those studied to have abnormal EP and oligoclonal bands in their spinal fluid (indicating an abnormal immune response), they did not prove to have any Borrelia antibody in their spinal fluid."
"The researchers concluded that the few patients with the MS-like symptoms probably had these symptoms due to MS and had also been exposed to the Borrelia bacterium."
"A companion study looked for the presence of Borrelia antibodies in the blood of 100 people with the diagnosis of possible MS. Of 89 people who in fact turned out to have definite MS, only one had Borrelia antibodies. The researcher concluded that '…infection with Borrelia is infrequent in MS patients who live in an endemic area. Lyme disease is unlikely to be a significant factor in the differential diagnosis of MS.' Furthermore, the presence or [sic: should be 'of'] antibodies to Borrelia does not prove that Borrelia is causing the neurological symptoms, only that there has been previous infection with the organism."
----------------------------------------------------------
Notice that the researchers assumed Lyme bacteria are best found in spinal fluid. From other things I've read, that's not where Lyme bugs like to swim.
It's like the story of the inebriated fellow who was having trouble finding his car keys in the pool of light under the street lamp, and when asked how he was sure that's where he dropped his keys, he said he didn't know where he dropped them, but the light there was better for searching.
In other words, you keep looking where your keys [= Lyme bacteria] aren't, you're not going to find what you're seeking.
I'll leave the parallels to you, dear readers.
There are also other posts online, but didn't have time to read them at the moment.
Have you found any follow up publications on the Lyme/MS link theory? The PubMed abstract is from 2005, and eight years is a long time with no further developments.
Jackie,
I am still undergoing testing and will have results in another week. I have been ill for 2 years with headaches, stiff neck, weight loss, ears ringing, night sweats, fatigue, unable to concentrate, pressure and electric current feeling in my head...and much more. Until now, although my monocyte count is through the roof and other WBC counts are abnormally low, I have been told that I 'probably have the flu'. I am now scheduled for 'dark field microscopy' to see what might be/is actually in my blood.
This all started with the classic 'worst flu ever'
I am still undergoing testing and will have results in another week. I have been ill for 2 years with headaches, stiff neck, weight loss, ears ringing, night sweats, fatigue, unable to concentrate, pressure and electric current feeling in my head...and much more. Until now, although my monocyte count is through the roof and other WBC counts are abnormally low, I have been told that I 'probably have the flu'. I am now scheduled for 'dark field microscopy' to see what might be/is actually in my blood.
This all started with the classic 'worst flu ever'
So in light of my previous posts, and that this protocol is 'known', I am unable to comprehend why doctors are not recommending/trying this treatment for Lyme and MS sufferers. Really, what is the risk versus the suffering being experienced for months and years by so many?
The bigger problem seems to be a lack of acceptance that Lyme is a real disease with a real cause. By the way, Borrelia (B.) burgdorferi is not so different a bacterium than Syphilis (also called 'the great imitator' and which is sexually transmitted - makes you wonder why Lyme which is also a spirochete is only transmitted by tick bite. Also, please read the following link about Syphilis which explains that it had 4 stages and can be hard to detect and can therefore become 'chronic'
http://en.wikipedia.org/wiki/Syphilis
The bigger problem seems to be a lack of acceptance that Lyme is a real disease with a real cause. By the way, Borrelia (B.) burgdorferi is not so different a bacterium than Syphilis (also called 'the great imitator' and which is sexually transmitted - makes you wonder why Lyme which is also a spirochete is only transmitted by tick bite. Also, please read the following link about Syphilis which explains that it had 4 stages and can be hard to detect and can therefore become 'chronic'
http://en.wikipedia.org/wiki/Syphilis
From the NIH (National Institute of Health)
http://www.ncbi.nlm.nih.gov/pubmed/15617845?dopt=Abstract
Notice the recommended protocol is similar to what I posted earlier.(specifically: "As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted")
Chronic Lyme borreliosis at the root of multiple sclerosis--is a cure with antibiotics attainable?
Fritzsche M.
Author information
Abstract
Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years. Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet. Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks. In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable. As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted. The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation. Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS. Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls. Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised. A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.
http://www.ncbi.nlm.nih.gov/pubmed/15617845?dopt=Abstract
Notice the recommended protocol is similar to what I posted earlier.(specifically: "As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted")
Chronic Lyme borreliosis at the root of multiple sclerosis--is a cure with antibiotics attainable?
Fritzsche M.
Author information
Abstract
Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years. Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet. Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks. In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable. As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted. The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation. Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS. Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls. Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised. A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.
Quite a complex treatment! Would be glad to see links to the documentation you have on these approaches.
Which part of the treatment is active against biofilms in order to reach the bacteria shielded there? That seems to be one of the particularly difficult problems to overcome in Lyme.
Were you tested/treated for any co-infections?
Which part of the treatment is active against biofilms in order to reach the bacteria shielded there? That seems to be one of the particularly difficult problems to overcome in Lyme.
Were you tested/treated for any co-infections?
I found this treatment protocol for Lyme (below): (I lost the source but will find again and post here). Also, the herx reaction is apparently due to ammonia which is a waste product produced by the bacteria (and parasites as well). L-ornithine is said to 'mop up'/help the body eliminate the ammonia which is very toxic, especially to the brain.
OK, here is the cure. It works and I've cured myself twice this way...You need 4 antibiotics (15 of each kind) to begin: Doxycycline, Minocycline, Tindamax and Bactrim. You take Doxy when you have joint pain but only take one a day. You take Minocycline + Tindamax together for nervous system symptoms but only take one dose. You take one Bactrim for digestive problems but only take one.
You take one of the 3 abx doses a day depending on what kind of symptoms you wake up with.
Doxy, Mino and Bactrim kill Borrelia by not allowing it to complete it's cell division. An hour and a half after taking Doxy the Borrelia will hide from it according to the good research Dr. Eva Sapi has done. Tindamax will kill the Borrelia blebs that contain m-RNA by blocking it's transcription into DNA.
Minocycline and Tindamax can cross the blood barrier to kill it in the brain, spine, and nervous system. Tindamax stops the Borellia from creating their round body forms when exposed to the Doxy in the Mino.
Bactrim will kill it in the digestive system.
When you have taken all the antibiotics you will probably have some Borrelia spirochetes left in the capillaries of the brain. To kill these you will need to drink Wild Cherry Bark extract drops in your favorite drink once a day for a month. Pinella will also work the same way. Or you can drink Celestial Seasonings Red Zinger tea for a month after completing the 45 day antibiotic treatment.
No matter how long you have had Lyme this will work!
I cured myself twice this way after being re-bitten. The second time took 8 weeks to a FULL cure. Good luck!
p.s. I have a degree in Cytology from Indiana University so if anyone wants the scientific papers to back up this cure I will be happy to point the way.
OK, here is the cure. It works and I've cured myself twice this way...You need 4 antibiotics (15 of each kind) to begin: Doxycycline, Minocycline, Tindamax and Bactrim. You take Doxy when you have joint pain but only take one a day. You take Minocycline + Tindamax together for nervous system symptoms but only take one dose. You take one Bactrim for digestive problems but only take one.
You take one of the 3 abx doses a day depending on what kind of symptoms you wake up with.
Doxy, Mino and Bactrim kill Borrelia by not allowing it to complete it's cell division. An hour and a half after taking Doxy the Borrelia will hide from it according to the good research Dr. Eva Sapi has done. Tindamax will kill the Borrelia blebs that contain m-RNA by blocking it's transcription into DNA.
Minocycline and Tindamax can cross the blood barrier to kill it in the brain, spine, and nervous system. Tindamax stops the Borellia from creating their round body forms when exposed to the Doxy in the Mino.
Bactrim will kill it in the digestive system.
When you have taken all the antibiotics you will probably have some Borrelia spirochetes left in the capillaries of the brain. To kill these you will need to drink Wild Cherry Bark extract drops in your favorite drink once a day for a month. Pinella will also work the same way. Or you can drink Celestial Seasonings Red Zinger tea for a month after completing the 45 day antibiotic treatment.
No matter how long you have had Lyme this will work!
I cured myself twice this way after being re-bitten. The second time took 8 weeks to a FULL cure. Good luck!
p.s. I have a degree in Cytology from Indiana University so if anyone wants the scientific papers to back up this cure I will be happy to point the way.
I don't know anything about gabapentin, but I think it's pretty well established that a bacterial infection (including Lyme) is not treated with immune-suppressing drugs like prednisone, because the immune system needs to be active to kill the bacteria.
I can't at a quick glance see what comment you are referring to, but my understanding is the same as yours.
There is some confusion in the medical world, because nonLLMDs will treat Lyme with a few weeks antibiotics, and any remaining symptoms are deemed 'post-Lyme', meaning that the Lyme bacteria are all dead and gone, so any continuing symptoms are your immune system over-reacting to bacteria that are no longer there. (Like after you've been mugged, you'll jump when you hear the smallest noise while walking down the street.)
LLMDs take a contrary view, which seems more reasonable to me: if you still have symptoms, you are still infected, and it means the treatment was not complete.
I can't at a quick glance see what comment you are referring to, but my understanding is the same as yours.
There is some confusion in the medical world, because nonLLMDs will treat Lyme with a few weeks antibiotics, and any remaining symptoms are deemed 'post-Lyme', meaning that the Lyme bacteria are all dead and gone, so any continuing symptoms are your immune system over-reacting to bacteria that are no longer there. (Like after you've been mugged, you'll jump when you hear the smallest noise while walking down the street.)
LLMDs take a contrary view, which seems more reasonable to me: if you still have symptoms, you are still infected, and it means the treatment was not complete.
Hi, now I am really confused. I take the gabapentin but for my neuro Lyme, I was told by a Dr who also has lyme never to take plaquinol or prednisone because it can help to destroy an already compromised immune system. Since he is a Doctor and has neuro lyme, I listened to him but it is all so confusing.
I too would get my kid to an LLMD.
I not sure if we have anyone here who is from your area, but by doing some simple google-type searches online, you will find website with referral functions. Here are two searches I just did that turned up some interesting possibilities:
llmd spokane
washington state lyme literate doctor
lyme disease association doctor referral
Also try ILADS [dot] org, the main voluntary group for Lyme docs. They may have a referral function too, or a list of member-docs that you could browse.
You might also search Idaho, of course, since I know Spokane and Seattle aren't near each other.
Some states don't allow docs to practice according to their consciences, but I don't know exactly which are which ... if you are coming up dry in one state, try another search, but I think Washington is okay for LLMDs from what I've just seen online.
Don't give up -- don't give up -- don't give up! Sending you all good wishes --
I not sure if we have anyone here who is from your area, but by doing some simple google-type searches online, you will find website with referral functions. Here are two searches I just did that turned up some interesting possibilities:
llmd spokane
washington state lyme literate doctor
lyme disease association doctor referral
Also try ILADS [dot] org, the main voluntary group for Lyme docs. They may have a referral function too, or a list of member-docs that you could browse.
You might also search Idaho, of course, since I know Spokane and Seattle aren't near each other.
Some states don't allow docs to practice according to their consciences, but I don't know exactly which are which ... if you are coming up dry in one state, try another search, but I think Washington is okay for LLMDs from what I've just seen online.
Don't give up -- don't give up -- don't give up! Sending you all good wishes --
My 11 year old son has been sick for a year. After many tests and procedures I asked for referral to infectious disease Dr because ifelt his symptoms sounded similar to lymes symptoms. Screen test for lymes was positive but the western blot or whatever test didn't give high enough result for him to say my son has lymes. I'm so frustrated I want to scream. My son always ask me to fix his bokenness and he asked me once if he was slowly dying and I just cried. All I ever hear the Drs say is he just has such strange symptoms. I'm not going to get any help going through the hmo hoops. Can anyone tell me who is lymes knowledgable in spokane washington
Weak and Failing ...
I hear you. A good rant cleanses the soul, as I have found through personal experience. I have witnesses. :)
You take care. Thanks for the post.
Jackie
I hear you. A good rant cleanses the soul, as I have found through personal experience. I have witnesses. :)
You take care. Thanks for the post.
Jackie
I want to restate my position on MDs. Having had so many bad experiences myself of being not listened to, deceived, and blown off by many MDs and then reading about Lori707's bad experiences and others' bad experiences here mobilized a tidal wave of negativity that caused me to speak possibly too harshly of MDs. Yes, they should think outside the box (i.e. think beyond just the labs and other diagnostic results). Yes, they should listen more to patients, trust us more, hear and realize the importance of our symptoms - which are real and not necessarily psychological - and they should understand the importance of our getting a diagnosis so we can receive appropriate treatment which might allow us to get back to normal again. However, still there are some very good MDs out there, a couple of whom I have as specialists (yet I'm having trouble finding a good neurologist). MDs aren't all bad. I applaud the MDs who are doing right by their patients, those who are really trying to find answers, and who are not settling for just the easy cop-out. I hope beyond hope that their numbers increase!!
WAF
WAF
Wow! That poor women! Most doctors have to see something in black and white print before they react and UNFORTUNATLEY they DON'T look outside the box! This is just a business they're running. When the doctors changed their hours to 9-5 Mon.-Fri. like most offices, I said to my husband that it scares me! Most doctors don't want complicated cases because it's more work for them and they can make the same money on someone who comes in to see them with a muscle pull. They have the right to have a life of their own and spend time with their families but these people CHOSE to be a doctor and that means to HEAL people and CARE for them. I hope some doctors are reading this.
Hey, thanks for the valuable input!!
JackieC, thanks so much for the details on Herx reaction. I'm a little scared about it, but my wonderful new N.D. gave me explicit instructions about taking the Cat's Claw - to drop back on the dosage if symptoms increase. It's worth the risk to hopefully have a valid Lyme test.
Lori707 - thanks for the lab suggestion. Will mention it to my N.D. Lori, what you, too, have been through!!! The expense, the nonsense!!! Haven't most of us heard the psych-cop-out-conclusion from doctors who either can't or don't care to bother to find our real diagnosis!! Your unsuccessful request for a Lyme test reminded me of an unfortunate woman in our town who begged for treatment with Tamiflu. She had been taking care of her mother, who was diagnosed with Swine Flu, and had developed symptoms identical to her mother's Swine Flu symptoms: Duhh - A no-brainer, right? Yet four days of pleading with hospital people trying to get them to give her Tamiflu and other traditional Swine flu treatment resulted in the hospital people just saying that her rapid flu tests were repeatedly negative so, despite obvious symptoms and the obvious 1+1=2 logic that it should, indeed, be Swine flu, her symptoms were ignored in favor of the negative diagnostic tests, and so they just let her die of what turned out to be, on autopsy, (surprise!) - Swine Flu. That speaks reams about the state of American medicine today: Big expense, over-reliance on diagnostics, arrogance coupled by little, if any, value for the money spent. I'm beginning to think that M.D. means "mostly dumb" and N.D. means "not dumb." That's all my opinion.
WAF
JackieC, thanks so much for the details on Herx reaction. I'm a little scared about it, but my wonderful new N.D. gave me explicit instructions about taking the Cat's Claw - to drop back on the dosage if symptoms increase. It's worth the risk to hopefully have a valid Lyme test.
Lori707 - thanks for the lab suggestion. Will mention it to my N.D. Lori, what you, too, have been through!!! The expense, the nonsense!!! Haven't most of us heard the psych-cop-out-conclusion from doctors who either can't or don't care to bother to find our real diagnosis!! Your unsuccessful request for a Lyme test reminded me of an unfortunate woman in our town who begged for treatment with Tamiflu. She had been taking care of her mother, who was diagnosed with Swine Flu, and had developed symptoms identical to her mother's Swine Flu symptoms: Duhh - A no-brainer, right? Yet four days of pleading with hospital people trying to get them to give her Tamiflu and other traditional Swine flu treatment resulted in the hospital people just saying that her rapid flu tests were repeatedly negative so, despite obvious symptoms and the obvious 1+1=2 logic that it should, indeed, be Swine flu, her symptoms were ignored in favor of the negative diagnostic tests, and so they just let her die of what turned out to be, on autopsy, (surprise!) - Swine Flu. That speaks reams about the state of American medicine today: Big expense, over-reliance on diagnostics, arrogance coupled by little, if any, value for the money spent. I'm beginning to think that M.D. means "mostly dumb" and N.D. means "not dumb." That's all my opinion.
WAF
Forgot to mention....My new LLMD took tests for co-infections. Yep..got it.
Ask you doctor to send your blood work to Igenix Labs in California. They KNOW how to test for Lymes!! And they also swab the blood and put it under a microscope. Now I know what shape may parasites are. AWFUL!! Other labs will probably come out negative while this CA lab would show positive.
Let us know.
Ask you doctor to send your blood work to Igenix Labs in California. They KNOW how to test for Lymes!! And they also swab the blood and put it under a microscope. Now I know what shape may parasites are. AWFUL!! Other labs will probably come out negative while this CA lab would show positive.
Let us know.
Hi there!
I've been posting for the past almost 4yrs. I got Lymes with the bulls eye rash and a postive test 24yrs ago. Unfortunately I was undertreated. A couple years later I felt awful again and got a Lymes test twice that came out negative. Six weeks after that my test came out positive. Then I received IV antibiotics. I felt better and went on my way. Fast forward many years later. Four years ago I started to have familiar symptoms of Lymes. I went to my doctor who specializes in Infectious Disease and asked him for a Lymes test. He said NO..I don't need it. Two weeks after that the world caved in on me. I was so sick like having the worst flu, the pain in my muscles and bones throughout my entire body made me scream and I had awful painful sharp pins and needles throughout my entire body. I went to many many doctors of all types and got admitted into one of the best teaching hospitals in Manhattan, NY. They did an entire work up on me just to let me go with a diagnose of "I need therapy and it's all in my mind". Please keep in mind that I was still begging for a Lymes test. One week after getting out of that hospital I was admitted to another teaching hospital for a week. No one would give me a Lymes test. I had bleeding ulcers in my descending colon but no colitis and my pancreas and liver enzymes were elevated. My blood pressure was eractic and so was my pulse. My pulse would go from 45 to 166 in a minute. Out of control. They gave me a heart catherization which came out clean. All this time my RA Factor was high and my ANA went positive indicating an infection. Then one day I brought my husband to my rhuematlogist and cried to PLEASE give me a Lymes test. He did. It came out POSITIVE!! What's wrong with these doctors????? If they just gave me my Lymes test 4yrs ealier, I wouldn't be suffering like I am today! I had a PICC line put in and got IV Recefin for 28days. My doctor said all the parasites are dead but I won't feel any better. I found myself a wonderful LLMD who also has Chronic Lymes for 20yrs. This doc tested my CD57 and it was low meaning my immune system is low. Lymes made it low and caused me to have Candida Albicans in my blood which in turn made me very acidic. Lymes also gave me Hashimoto's Thryriodosis (autoimmune desease of the thyroid). I keep taking tests and my Lymes is consistantly positive, my RH Factor is high, my ANA goes positive then negative. My muscles are not the same!!!! I am not the same and I fear that I will never feel good again. My LLMD is trying to get rid of my Candida which will make my PH normal. Then the doc wants to restart me on the IV antibiotics. This will hopefully put me in remission again. I have Chronic Lymes and I will always have it. I was told that. I just have to stay in remission. The Lymes triggered an autoimmune phenominon which can't be turned off. I'm taking Plaquinil and anti fungel meds along with many suppliments and some herbs. I'm also taking Gabapentin (Neurontin) for my Neuropathies.
That's my story after being misdiagnosed with RA and being nuts. I have high hopes with my new LLMD which my other doctors disagree with . This doc looks outside the box like ALL doctors should.
Hope all of you are feeling better and have a Great Holiday and a Very HEALTHY and Happy 2011!!
I've been posting for the past almost 4yrs. I got Lymes with the bulls eye rash and a postive test 24yrs ago. Unfortunately I was undertreated. A couple years later I felt awful again and got a Lymes test twice that came out negative. Six weeks after that my test came out positive. Then I received IV antibiotics. I felt better and went on my way. Fast forward many years later. Four years ago I started to have familiar symptoms of Lymes. I went to my doctor who specializes in Infectious Disease and asked him for a Lymes test. He said NO..I don't need it. Two weeks after that the world caved in on me. I was so sick like having the worst flu, the pain in my muscles and bones throughout my entire body made me scream and I had awful painful sharp pins and needles throughout my entire body. I went to many many doctors of all types and got admitted into one of the best teaching hospitals in Manhattan, NY. They did an entire work up on me just to let me go with a diagnose of "I need therapy and it's all in my mind". Please keep in mind that I was still begging for a Lymes test. One week after getting out of that hospital I was admitted to another teaching hospital for a week. No one would give me a Lymes test. I had bleeding ulcers in my descending colon but no colitis and my pancreas and liver enzymes were elevated. My blood pressure was eractic and so was my pulse. My pulse would go from 45 to 166 in a minute. Out of control. They gave me a heart catherization which came out clean. All this time my RA Factor was high and my ANA went positive indicating an infection. Then one day I brought my husband to my rhuematlogist and cried to PLEASE give me a Lymes test. He did. It came out POSITIVE!! What's wrong with these doctors????? If they just gave me my Lymes test 4yrs ealier, I wouldn't be suffering like I am today! I had a PICC line put in and got IV Recefin for 28days. My doctor said all the parasites are dead but I won't feel any better. I found myself a wonderful LLMD who also has Chronic Lymes for 20yrs. This doc tested my CD57 and it was low meaning my immune system is low. Lymes made it low and caused me to have Candida Albicans in my blood which in turn made me very acidic. Lymes also gave me Hashimoto's Thryriodosis (autoimmune desease of the thyroid). I keep taking tests and my Lymes is consistantly positive, my RH Factor is high, my ANA goes positive then negative. My muscles are not the same!!!! I am not the same and I fear that I will never feel good again. My LLMD is trying to get rid of my Candida which will make my PH normal. Then the doc wants to restart me on the IV antibiotics. This will hopefully put me in remission again. I have Chronic Lymes and I will always have it. I was told that. I just have to stay in remission. The Lymes triggered an autoimmune phenominon which can't be turned off. I'm taking Plaquinil and anti fungel meds along with many suppliments and some herbs. I'm also taking Gabapentin (Neurontin) for my Neuropathies.
That's my story after being misdiagnosed with RA and being nuts. I have high hopes with my new LLMD which my other doctors disagree with . This doc looks outside the box like ALL doctors should.
Hope all of you are feeling better and have a Great Holiday and a Very HEALTHY and Happy 2011!!
Congratulations! Finding the right doc is the most important step imho, because without that step, the rest is all much much harder. Don't fall in love too hard, tho, because docs are after all only people, but this one sounds like she has wings and a halo! Yay!
Most of us have Herxed, and it's different for everyone and different in the same person at different times. For me, it's a worsening of symptoms, sometimes just enough that I feel like I'm coming down with a cold or a bug, kind of draggy, achy, dull. Then a day or so later when I am coming out of it, I realize it was a Herx!
I also feel that same way when I'm just having a flare up of symptoms, so it's hard for me to tell the difference.
If the meds you are on are really giving the bugs a pounding, the Herx can be stronger, deeper and longer, and a severe Herx can, so I read, be dangerous, but I've not read that I remember of anyone being really hurt from it long term, tho I suppose that could happen.
What's happening in a Herx is that the meds are killing the bugs, and when their evil little bodies explode, the trash they leave behind is an irritant to your body, and it take a couple of days for your body to take out the trash and get the place tidied up.
Your doc may tell you if you get really bad Herxing to let her know and she will decide whether to cut back on the meds dosage, but that should always be done with your doc's okay, not on your own decision, because keeping steady levels of meds in your body may be important. (Some treatment schedules use 'pulsing', in which meds are given at higher and then lower doses and then higher and then lower, in waves. That's something your doc would talk to you about, and I wouldn't do pulsing on my own without medical guidance.)
Personally I found the disease much much worse than any Herxing I had, but for some people, the Herxing is not that easy. Bottom line: don't worry -- you'll get through it.
Let us know what happens and how you do -- pretty soon you'll have to change your screen name (from Weak and Falling) to Up And Dancing. :)
Good for you!!!
Most of us have Herxed, and it's different for everyone and different in the same person at different times. For me, it's a worsening of symptoms, sometimes just enough that I feel like I'm coming down with a cold or a bug, kind of draggy, achy, dull. Then a day or so later when I am coming out of it, I realize it was a Herx!
I also feel that same way when I'm just having a flare up of symptoms, so it's hard for me to tell the difference.
If the meds you are on are really giving the bugs a pounding, the Herx can be stronger, deeper and longer, and a severe Herx can, so I read, be dangerous, but I've not read that I remember of anyone being really hurt from it long term, tho I suppose that could happen.
What's happening in a Herx is that the meds are killing the bugs, and when their evil little bodies explode, the trash they leave behind is an irritant to your body, and it take a couple of days for your body to take out the trash and get the place tidied up.
Your doc may tell you if you get really bad Herxing to let her know and she will decide whether to cut back on the meds dosage, but that should always be done with your doc's okay, not on your own decision, because keeping steady levels of meds in your body may be important. (Some treatment schedules use 'pulsing', in which meds are given at higher and then lower doses and then higher and then lower, in waves. That's something your doc would talk to you about, and I wouldn't do pulsing on my own without medical guidance.)
Personally I found the disease much much worse than any Herxing I had, but for some people, the Herxing is not that easy. Bottom line: don't worry -- you'll get through it.
Let us know what happens and how you do -- pretty soon you'll have to change your screen name (from Weak and Falling) to Up And Dancing. :)
Good for you!!!
Thanks! I just came back from an appointment with a highly-recommended Lyme-savy N.D. A very professional and interested doctor - spent almost 2 hours with me!! I never felt more listened to and she was very thorough in going over all my lab tests. She says my symptoms seem like either Lyme or MS. She really zeroed in on all my prior studies - didn't miss anything!! Put together a plan for me starting with re-testing for Lyme after stoking my antibody production. I'm very excited about being on my way to possibly getting a real answer and treatment for my symptoms!
One question for you: Have you ever had a Herx reaction? What is it like? Can you be laid up in bed from a Herx reaction?
Thanks JC!!
WAF
One question for you: Have you ever had a Herx reaction? What is it like? Can you be laid up in bed from a Herx reaction?
Thanks JC!!
WAF
I just read Dr. Martz' story! Sheesh!! If his idea about Lyme/antibiotics had not serpentined relentlessly through his mind he would be dead now!!! Amazing!! Inspiring!!
I visited the CALDA site and read that interesting info. One thing: I don't have pain of any kind (except when my neck muscles get tired of holding my head up - goes away with a brace). Still not sure it's Lyme (but hoping it is - so can treat).
Thanks again!
WAF
I visited the CALDA site and read that interesting info. One thing: I don't have pain of any kind (except when my neck muscles get tired of holding my head up - goes away with a brace). Still not sure it's Lyme (but hoping it is - so can treat).
Thanks again!
WAF
You have both given me excellent answers that will help me greatly in pursuit of a diagnosis!!
Years ago when I saw that $@&% "ID specialist" I also had felt that the risk of antibiotic treatment was well worth taking but he refused to pursue that route despite my willingness to do so. I would subject myself to almost anything to stop dying, to become stronger, to get back to almost-normal as you two have done.
I know I am worsening, am dying - sometimes with very scary snake dreams. My scariest time is at night due to breathing issues despite an elevated head of bed, side sleeping, and nighttime BiPap breathing support. Without that breathing support, I'm sure I would not have been here now.
Unlike you, my symptoms do not run outside the parameters of one certain disease: ALS. My symptoms actually actually fit quite nicely within the parameters of ALS. For instance, among other symptoms, my mouth and cheeks currently feel so very weak! I'm eating all the "forbidden" and favorite foods now in preparation for the time when I may require a PEG tube for sustenance. Sadly, there is currently what appears to me to be nation-wide suppression of ALS diagnosing!! It is pathetic that individuals afflicted with such a horrendous disease as ALS are being deliberately lied to, stalled, kept in a medical "holding pattern", and denied diagnosis (especially if they are in their mid 50's to about age 67). Once past the maximum age of being able to get governmental disability, diagnosing is easier to come by. It is a national shame!! MS diagnosis is also very hard to get now unless you have exactly the right number of lesions on MRI in exactly the right textbook-prescribed places. I am even aware of someone with MS symptoms and the perfect MRI image of MS who was denied an MS diagnosis because of his age (60s). Others have had their legitimate MS diagnoses taken away from them.
Wonko, I'm glad you were able to recover from the damaging steroids! Maybe they thought you had MS. Steroids can bring on diabetes!! I hope you didn't develop that. Like you used to believe, I strongly feel my condition is neurologic.
JackieCalifornia: Our muscle wasting occurred differently: Yours was from disuse whereas mine was from actually using the muscles involved which caused their wasting. I traced it to a month-and-a-half of my folding up my treadmill because that action used exactly the muscles which then withered.
An excellent book I recommend reading (for anyone with illness not being properly treated through the conventional medical approach), is "Lean On Me" by Nancy Davis. She has MS and her diagnosing doctor told her to just "Go to bed for the rest of your life." She proved him wrong by using various alternative approaches to treating her MS. Currently, she is on no official MS medication and she is a beautiful and strong woman, still with MS. Doctors wanted to put her on steroids, but after researching and finding the steroid-diabetes connection, she refused. She advocates patient knowledge and the patient's having the final say on any medical treatment as well as using various sources of treatment - not just the conventional medical approach. Her book is empowering and worth reading!! Your library may have it or it is available on Amazon.com really cheap. You have already done what she advocates doing - thinking for yourselves, researching, and finding your own way to a cure! She might suggest an avenue you had not considered - so I still think her book is still worth your reading.
I'm going to have my ALS investigated, again, soon, but doubt I'll be diagnosed whether or not I have it (due to what I have already stated above). Sometimes, doctors have even refused to do the diagnostic testing needed to confirm diagnosis of ALS in the presence of a classic, textbook ALS symptoms. My opinion is, neurologists are being pressured not to diagnose ALS (until the final stages). ALS is not that hard to diagnose - for example, Lou Gehrig was diagnosed with ALS after 6 days of testing and he was not that far advanced - he could still play baseball!!
Once denied ALS diagnosis, I'll look into Lyme (what else can I do except that or go outside this country for perhaps a more honest answer).
Anyway, I treasure your responses! Sometimes when I realize the huge amount of money and effort I have already spent on medical inquiry without any answer, without a diagnosis, it makes me want to just give up and let death take me. But knowing that because you persisted despite being rebuffed medically, realizing that you were not crazy, that your symptoms were real, that you found your truth, the answer, the key which allowed you to regain your quality of life (Lyme is treatable - which I find thrilling!!) I will continue, will not give up, until I, too, have either found that what I have is not treatable or am restored to my former quality of life!!
Thank you, again, for your kind insights and suggestions!! I will use them to go forward!!
Hugs to you from WAF!
Years ago when I saw that $@&% "ID specialist" I also had felt that the risk of antibiotic treatment was well worth taking but he refused to pursue that route despite my willingness to do so. I would subject myself to almost anything to stop dying, to become stronger, to get back to almost-normal as you two have done.
I know I am worsening, am dying - sometimes with very scary snake dreams. My scariest time is at night due to breathing issues despite an elevated head of bed, side sleeping, and nighttime BiPap breathing support. Without that breathing support, I'm sure I would not have been here now.
Unlike you, my symptoms do not run outside the parameters of one certain disease: ALS. My symptoms actually actually fit quite nicely within the parameters of ALS. For instance, among other symptoms, my mouth and cheeks currently feel so very weak! I'm eating all the "forbidden" and favorite foods now in preparation for the time when I may require a PEG tube for sustenance. Sadly, there is currently what appears to me to be nation-wide suppression of ALS diagnosing!! It is pathetic that individuals afflicted with such a horrendous disease as ALS are being deliberately lied to, stalled, kept in a medical "holding pattern", and denied diagnosis (especially if they are in their mid 50's to about age 67). Once past the maximum age of being able to get governmental disability, diagnosing is easier to come by. It is a national shame!! MS diagnosis is also very hard to get now unless you have exactly the right number of lesions on MRI in exactly the right textbook-prescribed places. I am even aware of someone with MS symptoms and the perfect MRI image of MS who was denied an MS diagnosis because of his age (60s). Others have had their legitimate MS diagnoses taken away from them.
Wonko, I'm glad you were able to recover from the damaging steroids! Maybe they thought you had MS. Steroids can bring on diabetes!! I hope you didn't develop that. Like you used to believe, I strongly feel my condition is neurologic.
JackieCalifornia: Our muscle wasting occurred differently: Yours was from disuse whereas mine was from actually using the muscles involved which caused their wasting. I traced it to a month-and-a-half of my folding up my treadmill because that action used exactly the muscles which then withered.
An excellent book I recommend reading (for anyone with illness not being properly treated through the conventional medical approach), is "Lean On Me" by Nancy Davis. She has MS and her diagnosing doctor told her to just "Go to bed for the rest of your life." She proved him wrong by using various alternative approaches to treating her MS. Currently, she is on no official MS medication and she is a beautiful and strong woman, still with MS. Doctors wanted to put her on steroids, but after researching and finding the steroid-diabetes connection, she refused. She advocates patient knowledge and the patient's having the final say on any medical treatment as well as using various sources of treatment - not just the conventional medical approach. Her book is empowering and worth reading!! Your library may have it or it is available on Amazon.com really cheap. You have already done what she advocates doing - thinking for yourselves, researching, and finding your own way to a cure! She might suggest an avenue you had not considered - so I still think her book is still worth your reading.
I'm going to have my ALS investigated, again, soon, but doubt I'll be diagnosed whether or not I have it (due to what I have already stated above). Sometimes, doctors have even refused to do the diagnostic testing needed to confirm diagnosis of ALS in the presence of a classic, textbook ALS symptoms. My opinion is, neurologists are being pressured not to diagnose ALS (until the final stages). ALS is not that hard to diagnose - for example, Lou Gehrig was diagnosed with ALS after 6 days of testing and he was not that far advanced - he could still play baseball!!
Once denied ALS diagnosis, I'll look into Lyme (what else can I do except that or go outside this country for perhaps a more honest answer).
Anyway, I treasure your responses! Sometimes when I realize the huge amount of money and effort I have already spent on medical inquiry without any answer, without a diagnosis, it makes me want to just give up and let death take me. But knowing that because you persisted despite being rebuffed medically, realizing that you were not crazy, that your symptoms were real, that you found your truth, the answer, the key which allowed you to regain your quality of life (Lyme is treatable - which I find thrilling!!) I will continue, will not give up, until I, too, have either found that what I have is not treatable or am restored to my former quality of life!!
Thank you, again, for your kind insights and suggestions!! I will use them to go forward!!
Hugs to you from WAF!
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I'm so sorry your docs are doing what too many of mine did too: just blow it all off. What's good is: you aren't giving up finding out what's going on. I admire that spirit.
Whether you have Lyme, I don't know ... but I would be doing what you are doing until you get some real answers. Lyme affects everyone in slightly different ways, and if you don't have Lyme you might have something else that the same ticks carry.
There is a book by Pamela Weintraub, called 'Cure Unknown', now in paperback that you might find especially heartening. It's an awful title, but perhaps she means the cure is unknown for what ails our thickheaded medical community when it comes Lyme. There is a chapter about an MD who was himself told for years that he had ALS, and it turned out to be Lyme. He recovered. If you google/search "pamela weintraub cure unknown dave martz", the third hit down talks about him specifically.
About finding an LLMD (short for the slang term 'Lyme Literate MD', meaning an MD who 'gets it'), here are some websites, some with referral services. Also simply google/search "Utah LLMD" and you will find a lot of links, some of which may lead you to a good doc near you. Some of these have search functions just for finding an LLMD, but as you have already found, docs who take a broader view on the seriousness of Lyme and coinfections are not eager to plaster their names on billboards because of harrassment from state and local medical authorities. Also, if you get an LLMD that just doesn't seem right somehow, then switch. Even in mainstream medicine you get docs that just don't click, and it's true with Lyme even more, because it is the frontier of medicine.
ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)
The first one, ILADS, is the main organization for LLMDs. Under the tab 'About Lyme' are Burrascano's 'Diagnostic Hints and Treatment Guidelines.' Well worth reading if you're up to it.
The CALDA website might be interesting just because they post good stuff, and have a magazine they will send if you become a member (doesn't cost a lot.)
Best wishes to you -- stay strong, and come back and visit with us, okay?
and PS about your tests being negative: the tests are notoriously inaccurate, and if you have been infected for a while, it's not uncommon for them to come back negative, because they measure antibodies to Lyme bacteria, not the bacteria themselves. Some time after infection, the immune system just gives up and assumes that the bugs must be dead, so it stops making antibodies, and so the tests come back negative, even though you could have a huge case of Lyme. Some LLMDs will give an 'antibiotic challenge', meaning a short course of abx, then retest, to see if the meds woke up your immune system. Mainly what LLMDs know that other docs don't is that the tests are lousy and treatment must be based on the old fashioned way of medicine: history and exam, then tests, to come to a diagnosis. Modern medicine relies too much imho on tests alone and thinks we're all just wacky if we feel sick but the tests are fine.