1.VERY weak in her whole body 2.Has pain in her whole body 3. Started to loss muscle in her left leg then her left side of the body and now it has spread to the right side as well 4. Has twitching in her whole body 5. Has very high CPK(creatine phosphokinase) Total levels 6.Has elevated pulse from time to time 7.Her relfexes are mostly normal 8.Cannot sleep at night, insomnia 9.Has full sensations in her body, no numbness or loss of sensation. 10.Muscle cramps and spasms, mostly in the legs but happens in her whole body 11.Has trouble walking, she wabbles when she walks, also called gait imbalance 12.Has trouble doing simple things like combing her hair, shaving, putting on clothes 13.Has trouble getting up when seated 14.Has nerve damage, thats what her nerve conduction study showed 15.Has herniated discs in spine 16.Doesnt have any psychological problems, no halllucinations, no panic attacks or anything like that 17.Has mild depression but its due to her sickness ALL those symptons fit MultiFocal Motor neuropathy ? MD said a fybromyalgia Any suggestions would be greatly appreciated.
Posts: 8 | From LA.CA | Registered: Sep 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
YES.
With that potpourri of symptoms, you should get them to at least rule out lyme and it's co's through a LLMD....
Fibromyalgia is another umbrella diagnosis that often turns out to be lyme.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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TheTruth
Unregistered
posted
quote:Originally posted by ING2008: Here is a list of her symptoms:
1.VERY weak in her whole body 2.Has pain in her whole body 3. Started to loss muscle in her left leg then her left side of the body and now it has spread to the right side as well 4. Has twitching in her whole body 5. Has very high CPK(creatine phosphokinase) Total levels 6.Has elevated pulse from time to time 7.Her relfexes are mostly normal 8.Cannot sleep at night, insomnia 9.Has full sensations in her body, no numbness or loss of sensation. 10.Muscle cramps and spasms, mostly in the legs but happens in her whole body 11.Has trouble walking, she wabbles when she walks, also called gait imbalance 12.Has trouble doing simple things like combing her hair, shaving, putting on clothes 13.Has trouble getting up when seated 14.Has nerve damage, thats what her nerve conduction study showed 15.Has herniated discs in spine 16.Doesnt have any psychological problems, no halllucinations, no panic attacks or anything like that 17.Has mild depression but its due to her sickness ALL those symptons fit MultiFocal Motor neuropathy ? MD said a fybromyalgia Any suggestions would be greatly appreciated.
"Yes" is not an appropriate answer. The true answer depends on a LOT of things. How old is she? What workup has been done thus far? Weakness, leg spasms, nerve conduction abnormalities, gait abnormalities...all can be symptoms of a herniated disc (which you already wrote that she has), or any other type of neuropathy (including diabetic neuropathy). What are her risk factors for Lyme disease. What tests have been conducted.
I think it is not right for another poster to simply reply "Yes" - telling you to potentially pay several hundred dollars out of pocket without more information. There are MANY medical diseases out there. Lyme, given its variable presentation, often becomes a diagnosis when other common disease have first been ruled out.
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Lymeorsomething
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Member # 16359
posted
Yes is an appropriate answer if you care about your health and want to make sure you're undergoing the right kind of treatment.
If you put money over your health, then maybe yes is the wrong answer.
A couple hundred bucks for some peace of mind isn't really that much of a stretch....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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TheTruth
Unregistered
posted
I respectfully disagree. People who have already been diagnosed with lyme see lyme everywhere. I'm not saying that it the person in question does not have lyme. However, refering a patient to a lyme specialist without any knowledge of the patient and not knowing anything about the workup conducted thus far is not correct nor fair. You have no idea where she is from, any other medical problems, her age or, for that matter, anything about her! Are there any patients in whom you would NOT recommend consultation with a LLMD?
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Muscle wasting, high CPK and a FIBRO diagnosis is enough IMO to see a Lyme Literate.
Twitches, insomnia and herniated discs are also linked big time to lymies.
Posts: 983 | From The sky | Registered: Feb 2005
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Truth, there are patients who go to nine, ten, eleven doctors and then settle on fibro with doctor twelve.
All I suggested was to rule lyme out. Lyme is a body wide illness and it makes good sense to rule it out, especially when the primary diagnosis is fibro. A simple western blot is not going to take much money or time away from people and may ultimately put them on the right path to getting well.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
TF was kind enough to post this link on another thread...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
EVERY one of those symptoms is associated with mitochondrial / metabolic myopathies...there are other things! I agree, we all know far too little at this point to venture a guess.
Just as other things should be ruled out if not already, so should TBIs.
I've always been curious if there are published stats on how many LLMD patients are not diagnosed with TBIs. I realize it's biased as many patients have ruled out many things prior to the visit, but this would still be very interesting.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yep, no harm from ruling stuff out only from not ruling it out....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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bettyg
Unregistered
posted
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
check my table of contents below in my newbie package for ALL SYMPTOMS OF LYME and 3 main co-infections of lyme.
i've had chronic lyme 38.5 years; 34 yrs. MISDIAGNOSED by 40-50 drs!!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
The Truth??
Last time I checked herniated disks didn't cause insomnia, body wide muscle twitches, and an elevated pulse.
You said, "I think it is not right for another poster to simply reply "yes" - telling you to potentially pay several hundred dollars out of pocket without more information."
Here is the truth, "TheTruth":
Most people who have Lyme disease spent THOUSANDS of dollars on WORTHLESS medical tests before spending a few hundred bucks on a Lyme test.
A few hundred bucks is just a drop in the bucket at that point.
But, at that point Lyme is usually chronic and the person spends an average of a hundred thousand dollars to get well - when all the while, if in the beginning someone had said, "Hey, let's test for Lyme" all that could be so easily avoided.
And why does it matter how old she is? Are you hoping she's old so you can say, "Ah, old age...comes with the territory"
Or a child so you can say, "Um-hm, growing pains!"
Or maybe a teenager so you can say, "Just hormones, kids these days..."
And another favorite of mine came out of your mouth - "RISK FACTORS"
Here is another truth "TheTruth" (hang on, I'm choking on your screen name - better than throwing up, which is what I want to do)
The real TRUTH is that Lyme disease is an epidemic. It is everywhere. And unless you live in a cave, which most people don't, your at risk.
Walking outside is a "risk factor". Owning a pet is a "risk factor".
It's attitudes like yours that create chronic Lyme disease.
Do you have Lyme? I have a hard time believing that someone with Lyme would come on a support forum and discourage someone with SEVENTEEN Lyme symptoms from getting a Lyme test.
posted
The point is that you go to a lyme expert because he/she will consider lyme and other tickborne diseases in the differential diagnosis, unlike many other doctors. They will not ignore the possibility. And it would be better to find out that you might have a treatable disease, rather than never know it and suffer the consequences. If she doesn't have it, that will be useful to know also.
"The Truth" is either a troll or someone who is not very well informed. I am seeing a pattern in this person's posts, and where are the moderators? Anyone notify them?
[ 12. September 2008, 10:13 AM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Has she ever been bitten by a tick in her lifetime? That could be a big reason to suspect it. Though not all people remember being bitten by one.
You could always order an Igenex kit and see what happens, though it could definitely have false negatives.
All in all, I would go with your intuition.
I was sure I didn't have Lyme because I only had fatigue and brain fog that I could report.....didn't even at the time remember my tick bites from my younger years because my memory was really bad.
But I came back CDC positive for Lyme, as well as babesia and bartonella.
I'm sure "The Truth" or no-one for that matter, rightfully so perhaps, would have suspected Lyme and co's in someone who comes into a doctor's office with horrible fatigue and not much else. I had other symptoms like headaches, etc......but I was literally so fatigued and dazed I didn't notice any of my other symptoms.
So yes you are being conservative in your over-the-internet suggestions of who could have Lyme and who doesn't, "The Truth," but you could be costing people a lot through your negative influences. Yes, you could be helping them, but I think the risk you are hurting them is there too.
A lot of people with those symptoms could have other diseases, but my story shows that even when the patient and his/her family has no reason to suspect Lyme, it could still be there, making the disabled person INCREDIBLY ill.
Based on those symptoms listed, I can't really conclude too much. The one thing that seems significant is the symptom that was only on the left side of the body, then moved to the right. I'm not sure if there are other conditions that cause "one side of the body" symptoms, but Lyme is definitely one of them.
Posts: 4590 | From Midwest | Registered: Jun 2008
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adamm
Unregistered
posted
Yep. The cognitive impairment in particular points to Lyme.
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Order test #188 and 189. Take it to a lab or doctor early in the week and overnight ship it to the lab.
Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Whether it's a troll or a grossly misinformed person: we don't need either here
Maybe you should start packing your bags TheTruth - need any help?
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
I'll help too!!
Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
EVERY person who has received a dx of fibromyaglia should be assessed for all the tick-borne diseases (TBD) as well as for Cpn, HHV-6, etc. (see the post after this one for links).
Fibromyalgia patients, OFTEN, have been found to have lyme or other chronic stealth (hidden, sly) infections. Same, too, for CFS and some MS patients, too.
Apologies for the long lists or repeats from others' suggestions.
The first few links will explain the current medical/political situation and WHY a certain kind of doctor is needed - and WHY most doctors - and labs - are not adequate for chronic stealth infection diagnostics.
You have to know about the politics first so that you can then find the best help possible as quickly as possible.
Sadly, you have sort of entered a graduate level class. Be aware that most medical schools do not teach about tick-borne disease (TBD).
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Not certain if this has been mentioned yet. The reason your relative should see a LLMD (Lyme Literate MD) is because most other doctors rely on less accurate tests than the LLMD's do.
LLMD's have been trained about the nuances of Lyme and can interpret the tests from Igenex, the lab that includes more information than the rest do.
You can get help with finding a LLMD by going to the Seeking a Doctor Forum. Go to the bottom of this page and select that from the options, then click go.
Post your relative's state and the names of large cities nearby in the title. You can also title it something like "Need LLMD in Southern NJ."
I agree with those who say, at least get her to a LLMD. It's the best way to rule out Lyme.
I also agree with those who have said that some of her symptoms are not possible FM symptoms, but are Lyme symptoms.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema. BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I would like to thank you everyone for their input Thank you, thank you, thank you. She is in her 50th,not overweight and not a diabetic.She has it almost for 4 years, and MD do not know the reason.I will ask her what tests were done.One thing I know for sure :no one mentioned and tested her for any infections diseases.. Thank you everyone again.
Posts: 8 | From LA.CA | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
ING,
Glad you got the replies and appear not to have been too blown away by the complexity of it all.
You said: " . . .One thing I know for sure :no one mentioned and tested her for any infections diseases. . . ."
It is sad that many doctors really don't know and some really don't believe an infection can last longer than a week or two.
Doctors (in my experience) tend to assume symptoms are a character flaw when "no explanation" shows up on the very few test they might do. It never occurs to them that 1) we can't test for everything or know everything or 2) there may be better tests or different methods for better results and 3) a good clinical evaluation IS a part of good medicine.
It's very nice of you to be interested. I hope you find a doctor who will be delighted to work with your relative. As hard as this is for everyone, I hope that both of you can find that level of delight.
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