posted
This board is great I have found a lot of information here.
My question is should I go to an LLMD before I see a Neurologist or continue on my own?
My health summary:
I have been to 4 MD's and one chiropractor and have had phone consultations with a ND candidate who had Lyme.
All the standard tests have come back ok. One MD felt I had Rheumatoid Arthritis or Lupus but they are not showing up on the test results.
I did have high mercury levels Feb. 2005 but as of Aug. 2005 the level was barely above maximum.
Major symptoms: -muscle twitches all over the body for varying lengths of time.
-burning muscles
-stinging and pain in the muscles
-muscle weakness and some muscle atrophy in arms and forearms
-tired muscles
-overall fatigue and tiredness
-joint pain in shoulder joints, wrists, knees elbows (these pains come and go)
-stiff neck
-shoulder joints that pop and crack
-cracking in neck as I turn it
-small bright red ink pen sized dots on my upper torso and arms
-nine or ten years ago I got what I thought were chigger bites on the back of my legs and after that time I came down with what was diagnosis as migratory arthritis which was treated with steroid shots. I lived with this joint pain until about October of 2004 when the first twitches began. I also developed seasonal allergies or mild asthma at this time. A few years after this, I struggled with eye floaters until I used antibiotic eye drops. Nine years ago they thought I had RA or lupus but I didn't.
In March 2006 a local MD agreed to run IgeneX Western Blot tests and results are as follows:
Lyme IgM Western Blot 18 kDa - 22 kDa - **23-25 kDa IND 28 kDa - 30 kDa - **31 kDa - **34 kDa IND 37 kDa - **39 kDa IND **41 kDa + 45 kDa + 58 kDa - 66 kDa + 73 kDa - **83-93 kDa -
I have had some real positive results with a parasite cleanse using artemisinin, cloves and black walnut green hull at the end of March 2006. Then in the middle of April I started on the "Healing Lyme" protocol and have had even more positive results. The symptoms would show up about every 7 to 10 days.
The fatigue and tiredness lifted after using the parasite cleanse and has only come back for a day at various times. Three weeks ago I did have one relapse with all the symptoms that lasted for one week.
I am currently symptom free except for my right leg that feels tired in the hamstring muscle. The right leg does exhibit some weakness at this time. Arm muscles have not returned to normal as of today.
My self treatment has been at the guidance of the ND candidate and by using Healing Lyme. One MD has suggested that I see the neurologist, IU Med Ctr or Mayo Clinic. I have had various medical professionals and people with experience with these types of symptoms tell me that Neuro and IU Med Ctr will not be much help with my symptoms.
I have an appointment with Dr. C in MO and Dr. J in Western PA - not sure which one to see?
I also am debating whether to see the Neuro?
Any thoughts on piecing this puzzle to together would be helpful?
S in Indiana
Posts: 59 | From Indiana | Registered: Jun 2006
| IP: Logged |
posted
I have seen several neuro's. Neuro's may help with ruling in or out other diseases like MS, which as you know causes all these symptoms. Neuro's are the worst for Lyme. None of the 3 neuro's I saw knew anything about it but they did rule out MS.
Posts: 340 | From Ohio | Registered: Oct 2005
| IP: Logged |
-struggle with short term memory in the past year and a half
-speech slurring at varies times
-tripping over the floor at various times
-all of these symptoms come and go and vary in degree of severity at times
-emotionally up and down the past 10 years
-ringing in ears that varies and ears that feel stopped up at times
-a nagging rash that has been with me since the bites on my legs, it comes and goes
In the original post I said symptom free at current time but it can change tomorrow and I can have anyone of the symptoms tomorrow or even tonight.
My biggest concern is the muscles weakness and muscle atrophy in my biceps and forearms that was diagnosised by the one MD. I was able to workout all muscles with light weights in the past few days and the muschles felt like they responded but it is as if some muscles are missing on the inside of my biceps and forearms.
One other thought, over the past ten years during the winter and even in the summer months, I would need antibiotics to get rid of colds, chest colds(bronchitis) and ear aches. I had until two years ago taken a course of antibiotics on average 5 times a year. Almost two years ago after the first twitch I went somewhat orginic, no sugar and no yeast most of the time.
I have also not taken any antibiotics over the course of this time until two weeks ago when I did a 7 day amox. course to see how I respond. In the middle of the 7 days, I deveoped flu-like symptoms and a stiff neck for two days and then it went away.
I have also been on a liquid nutritional supplement at double the recommended dosage for almost six months now. I had the major relapse a few weeks ago as I tried to reduce the dosage to the daily recommended amount or less while continuing the "Healing Lyme" protocol.
S in Indiana
Posts: 59 | From Indiana | Registered: Jun 2006
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
If it where me I would go to a LLMD first.
A neuro duck would be my last resort.
And IMHO lyme is way to complicated to self treat.
I am sorry you are so sick and hope you can find your way back to feeling better
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Lyme disease is a bacterial infection. Not only that, but the bacteria is small enough to hide in a cell wall, it can put on the coating of t-cells and disguise itself from antibodies, it can change forms, it can go dormant and it can cause lasting damage in your body.
Doctors who have experience treating Lyme disease are your best bet. Either of the doctors you mentioned are excellent.
posted
Hello, Have you had an MRI of the brain? Due to your age you want to rule out amyotrophic lateral sclerosis (which is rare), and move on from that. Keeping in mind that some believe that ALS could be from LD. Again, unlikely but important for your future health pathology. The main reason I cite this is the sluring and twitches/fasciculations. Chiropractors are not qualified to diagnosis but often go beyond their limitations. I have had this experience, would love to share that some time. I have tons of knowledge to share. Feel free to contact me. Perhaps it would be helpful for you to go over the following symptom list (copy/paste it) and make a check list to help you feel more secure with pin pointing your pathology.
Here it is, and good luck! Jmcc.
DEFINITIONS OF SYMPTOMS PERTAINING TO LYME DISEASE (General Symptoms) Check clear circle
Translated into Lay English John C. McCormack
--I am not a physician and this is not meant to supplement your physicians assistance.
--No one person will have an identical experience with Lyme disease, no one patient will experience every symptom. All symptoms are non-specific for LD yet help to comprise a clinical and technical pathogenesis in which to present a clearer picture to your physician in as much that you receive the proper diagnoses.
o Nose Tingling o Neck Stiffness o Neck Pain o Jaw Pain o Jaw Stiffness o Jaw Cramping o Lock Jaw (Momentary/Chronic) o Sore throat o Clearing throat o Phlegm (Chronic) o Hoarseness o Runny nose o Ears (Decreased Hearing) o Ears (Plugged) o Ears (Buzzing) o Ears (Pain) o Ears (Sound Oversensitivity) o Ears (Ringing) o Ears (Popping) o Eyes (Floaters) o Eyes (Pain, In) o Eyes (Pain, Around) o Eyes (Pain, Behind) o Eyes (Peripheral Waves) o Eyes (Phantom Images) o Eyes (Flashing lights) o Eyes (Light Sensitivity) o Vision (Blurred) o Vision (Double) o Vision (Loss) o Hair Loss o Shortness of Breath o Speech (Thick) o Speech (Slurred) o Speech (Slow) o Speech (Stammering) o Dementia o Diarrhea o Constipation o Difficulty Swallowing o Drooling o Short Term Memory Loss o Long Term Memory Loss o Clumsiness o Headache o Disorientation o Loss of Sex Drive o Sexual Dysfunction o Bladder Dysfunction o Bowel Dysfunction o Fever (Recurring) o Infections (Recurring) o Low Temperature o Migrating Pain o Menstrual Pain/Irregular o Breast Pain/Discharge o Upset Stomach o Nausea o Bone pain o Joint pain o Stiffness (Joints) o Stiffness (Extremities) o Chest pain o Muscle pain o Spasms o Cramps o Night sweats o Day sweats o Unexplained Chills o Heart Palpitations o Fatigue o Weakness (Limbs) o Partial Paralysis (Limbs) o Lymph Node Pain o Lymph Node Swelling o Dental Pain (Unexplained) o Pain (generalized) o Poor balance o Increased Motion Sickness o Lightheadedness o Wooziness o Heavy Headedness o Insomnia o Depression o Irritability o Mood swings o Anxiety o Weight Gain o Weight Loss o Testicular pain o Pelvic pain o Increased Alcohol Affect o Worse hangover o Allergy Sensitivity o Chemical Sensitivity o Unidentified skin blotches or freckles
SYMPTOMS REQUIRING CLEAR DEFINITION (Other Symptoms) (Definitions Below) Circle black bullet
Internal Vibration: -Term is self explanatory. Refers to a non-painful sensation within the internal body that can present it self anywhere within or have a mass internal effect. The sensation can be described as an internal vibration, flurry, rain storm, to name few. Symptom is non-specific.
Pruritus/ani: -Itching is a symptom we have all experienced but cannot easily describe or define. It is a peculiarly uncomfortable skin sensation. That much is certain. It may feel as if something is crawling on (or in) your skin. Itching can be diffuse (generalized) or localized -- all over or confined to a specific spot -- and there are many causes of diffuse and localized itching. Perhaps the best definition of itching is by the response it evokes -- it is a feeling that makes you want to scratch.
Erythema Migrans: - Noted as the ``Bull's Eye Rash'' which is specific to Lyme disease. It appears like a Bull's Eye and may or may not be at the site of the tick bite. Lest than 15% of people infected with this condition recall a rash. There are other non-specific rashes and skin lesions that are believed to have direct correlation to this etiology.
Maculopapular Lesion: -Noted in several cases, patient can have one to many. They appear dark red and are generally rectangular. They may or may not be associated with pruritis.
Paresthesias: -Abnormal nerve sensations such as pins-and-needles, tingling, burning, prickling or similar feelings are all known as "parethesias". They usually result from nerve damage due to pressure (such as a pinched nerve), entrapment, or diseases. Continued nerve damage can lead to numbness. Paresthesias can affect various parts of the body. Hands, fingers, and feet are common sites but all are possibilities. Afflictions of specific nerves or spinal nerves can also cause parethesias in particular skin areas of the body.
Numbness: -Deprived of the power to feel or move normally. A general loss of feeling or sensation that can be topical or complete. Can effect any part of the body.
Bell's Palsy: -Partial facial paralysis from facial nerve damage. Bell's palsy is a form of facial paralysis resulting from damage to the 7th (facial) cranial nerve. A form of Bell's Palsy can also happen in the stomach region.
Vertigo: -Feeling that the room or person is moving or spinning. The person can also experience sensations that indicate altitudinous changes, i.e. drops/climbs. Vertigo is the sensation that the room is moving or spinning, or that the person is moving or spinning within the environment. The term "dizziness" is often used for milder feelings of lightheadedness, but this word needs to be distinguished from symptoms such as balance difficulty, fainting, or general weakness. True dizziness is a lightheadedness or a sensation that you are about to faint. True vertigo requires the sensation of movement. Any dizziness or vertigo symptom needs prompt professional medical advice.
Burning: -Sensations that feel like burning in different parts of the body. It varies from mild and benign to extreme. It is a part of parethesias.
Heat patches: -A part of parethesias. A sensation of hot spots in different areas of the body.
Stabbing pain/Shooting pain: -A part of parethesias, self explanatory.
Lhermitte's Sign: -Lhermitte's symptom is that of an electrical sensation in the spine or limbs on neck flexion. It can also cause buzzing patches throughout the limbs and or face. Pressure in Head: -A sensation of ``water on the brain'' and pressure that is variable in affectation.
White Matter Lesions: -Plaques within the brain or spinal cord that are demyelinating. They are generally non-specific and have certain evidences that specify them more clearly. Such as ovoid lesions that are periventricular are most commonly seen in multiple sclerosis and Lyme disease.
Twitching/Fasciculations: -There are benign fasciculations that occur. Involuntary contraction of the muscle fibers innervated by a motor unit. Fasciculations can often by visualized and take the form of a muscle twitch or dimpling under the skin, but usually do not generate sufficient force to move a limb. Twitching is listed as an alternate name or description for symptom Twitches. For a medical symptom description of 'Twitching', the following symptom information may be relevant to the symptoms: Twitches (symptom). However, note that other causes of the symptom 'Twitching' may be possible.
Interstitial cystitis: -Interstitial cystitis (IC), one of the chronic pelvic pain disorders, is a condition resulting in recurring discomfort or pain in the bladder and the surrounding pelvic region. Interstitial cystitis is an odd disease that is difficult to diagnose. It causes pain and irritation to the bladder and pelvic area, and thereby causes various urination symptoms. Its cause is unclear, but may be autoimmune, or perhaps only some cases are autoimmune. Diagnosis of IC is often by ruling out all other possible causes of bladder symptoms. Confirmation of a diagnosis is difficult, and the most compelling evidence for diagnosis is often from surgery and biopsy, rather than any specific urine or blood tests.
External Sphincter Dyssynergia (DESD): -The sphincter externalizes itself creating what appears to be a sensation of a small soft golf ball size addition around the anus.
Carpal tunnel syndrome: -Hand or wrist problems; often from repetitive motion. Carpal tunnel syndrome occurs when tendons or ligaments in the wrist become enlarged, often from inflammation, after being aggravated. The narrowed tunnel of bones and ligaments in the wrist pinches the nerves that reach the fingers and the muscles at the base of the thumb.
GERD: -Reflux refers to the stomach acid rising up the "wrong way" back up the esophagus and sometimes into the mouth. When this occurs chronically it is probably caused by Gastroesophageal Reflux Disease (GERD). Symptoms typically include recurrent heartburn, reflux, and regurgitation, but may also include chest pain, hoarseness or swallowing difficulty; see also other symptoms of GERD. Diagnosis of GERD requires consideration of other possible underlying conditions causing symptoms, such as hiatal hernia.
Malaise: -General feelings of discomfort or being ill-at-ease.
Gait: -Difficulty walking, such as Ataxia.
Ataxia: -Clumsiness, loss of balance, inability to walk a straight line.
Sleep Apnea: -Sleep apnea is a common disorder in which breathing stops during sleep for 10 seconds or more, sometimes more than 300 times a night. The hallmark of the disorder is excessive daytime sleepiness and compromised quality of life, including significant social and emotional problems.
Atrophy: -General name for any wasting away of muscles or body tissue.
Myoclonic Jerking: -One may be jerked or jolted awake by an unknown cause. Action myoclonus is characterized by muscular jerking triggered or intensified by voluntary movement or even the intention to move. It may be made worse by attempts at precise, coordinated movements. Action myoclonus is the most disabling form of myoclonus and can affect the arms, legs, face, and even the voice. This type of myoclonus often is caused by brain damage that results from a lack of oxygen and blood flow to the brain when breathing or heartbeat is temporarily stopped.
Clonus: -Clonus is repetitive, rhythmic contractions of a muscle when attempting to hold it in a stretched state. It is a strong, deep tendon reflex that occurs when the central nervous system fails to inhibit it. Clonus is not the same thing as myoclonus, which is irregular and uncontrollable jerks of a muscle or group of muscles (see above).
Expressed Energy Nocturnal: A sensation that one wants to run while trying to fall asleep. All of these symptoms may be present due to restless leg syndrome. Restless legs syndrome is a sensory-motor (movement) disorder characterized by uncomfortable sensations in the legs, which are worse during periods of inactivity or rest or while sitting or lying down. There is often a positive family history of the disorder.
Spasticity: -Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with gait, movement, and speech.
Tremor: -Tremor in the hand or foot on one side of the body, or less commonly in the jaw or face. It appears as a "beating" or oscillating movement. Because the tremor usually appears when a person's muscles are relaxed, it is called "resting tremor." This means that the affected body part trembles when it is not doing work, and it usually subsides when a person begins an action. The tremor often spreads to the other side of the body as the disease progresses, but remains most apparent on the original side of occurrence.
Rigidity: -Rigidity, also called increased muscle tone, means stiffness or inflexibility of the muscles. Muscles normally stretch when they move, and then relax when they are at rest. In rigidity, the muscle tone of an affected limb is always stiff and does not relax, sometimes resulting in a decreased range of motion. For example, a person who has rigidity may not be able to swing his or her arms when walking because the muscles are too tight. Rigidity can cause pain and cramping.
Bradykinesia: -Bradykinesia is the phenomenon of a person experiencing slow movements. In addition to slow movements, a person with bradykinesia will probably also have incomplete movement, difficulty initiating movements and sudden stopping of ongoing movement. People who have bradykinesia may walk with short, shuffling steps (this is called festination). Bradykinesia and rigidity can occur in the facial muscles, reducing a person's range of facial expressions and resulting in a "mask-like" appearance.
Postural instability or impaired balance and coordination: -An experience of instability when standing or impaired balance and coordination. These symptoms, combined with other symptoms such as bradykinesia, increase the probability of falling. People with balance problems may have difficulty making turns or abrupt movements. They may go through periods of "freezing," which is when a person feels stuck to the ground and finds it difficult to start walking. The slowness and incompleteness of movement can also affect speaking and swallowing.
Micrographia: - small, cramped handwriting.
Masking: -Loss of facial expression.
Dysphagia: -Difficulty or pain when swallowing.
Choroiditis: -Inflammation of the choroid in which the sensory retina becomes edematous and opaque. The inflammatory cells and exudate may burst through the sensory retina to cloud the vitreous body.
Endophthalmitis: - Suppurative inflammation of the tissues of the internal structures of the eye; not all layers of the uvea are affected. Fungi, necrosis of intraocular tumors, and retained intraocular foreign bodies often cause a purulent endophthalmitis.
Oculomotor (Weakness): -Nerve disruption in the oculomotor.
Uveitis: -Acute or chronic inflammation of the iris and ciliary body characterized by exudates into the anterior chamber, discoloration of the iris, and constricted, sluggish pupil. Symptoms include radiating pain, photophobia, lacrimation, and interference with vision.
Scleritis: -Inflammation of the white part of eyeball. Refers to any inflammation of the sclera including episcleritis, a benign condition affecting only the episclera, which is generally short-lived and easily treated. Classic scleritis, on the other hand, affects deeper tissue and is characterized by higher rates of visual acuity loss and even mortality, particularly in necrotizing form. Its characteristic symptom is severe and general head pain. Scleritis has also been associated with systemic collagen disease. Etiology is unknown but is thought to involve a local immune response. Treatment is difficult and includes administration of anti-inflammatory and immunosuppressive agents such as corticosteroids. Inflammation of the sclera may also be secondary to inflammation of adjacent tissues, such as the conjunctiva.
Splenitis: -Inflammation of the spleen. Nystagmus: - Involuntary jerky eye movements. The presence or absence of nystagmus is often used in the diagnosis of a variety of neurological and visual disorders. The list of signs and symptoms mentioned in various sources for Nystagmus includes those listed below. Note that Nystagmus symptoms usually refers to various symptoms known to a patient, but the phrase Nystagmus signs may refer to those signs only noticable by a doctor: * Involuntary eye movements * Eyes moving side to side - most common * Eyes moving up and down * Eyes moving in circles * Both eyes moving together Keratitis: - Inflammation of the cornea. The list of signs and symptoms mentioned in various sources for Keratitis includes those listed below. Note that Keratitis symptoms usually refers to various symptoms known to a patient, but the phrase Keratitis signs may refer to those signs only noticable by a doctor: * Red eye * Eye inflammation * Watering eye * Severe eye pain * Blurred vision * Yellow eye discharge * Light sensitivity Conjunctivitis: - The list of signs and symptoms mentioned in various sources for Conjunctivitis includes those listed below. Note that Conjunctivitis symptoms usually refers to various symptoms known to a patient, but the phrase Conjunctivitis signs may refer to those signs only noticable by a doctor: * Pink eye * Irritated eye * Eye discharge * Swollen eyelid * Reddened eye * Crusting eye * Eyelids glued shut after sleep * Eye pain * Eye discomfort * Gritty eye * Itchy eye * Yellow eye discharge * Light sensitivity
posted
Thanks to all who have responded. I have been struggling with whether I needed to see an LLMD or the neuro. All of your posts are helping me to make a decision.
More responses are welcome.
S in Indiana
Posts: 59 | From Indiana | Registered: Jun 2006
| IP: Logged |
No I have not had an MRI. One of my concerns has been ALS but I am looking to Lyme because of all of my symptoms and how they come and go and because of Western Blot tests. I know that they were not positive per IgeneX or CDC but I had enough IND's that would have made IgeneX positive if just one of the IND's came back +.
I was considering going to the neuro just to see what they would say about ALS, MS, etc. I have a neuro appointment this Wed. but I am considering cancelling it Tues. morning and waiting until after I see one of the LLMD's and then go to the neuro if the LLMD thinks I should. Any thoughts? (not just jmcc, anyone else?)
It sounds like you have a lot of experience with these symptoms, when or how can we talk?
Thanks,
Stan
Posts: 59 | From Indiana | Registered: Jun 2006
| IP: Logged |
JimBoB
Unregistered
posted
IF you can afford an LLMD, that is what you should do.
Myself, I could not and cannot, so I am self treating with the help of the "Healing Lyme" book, and others, plus what I have learned on this and other internet education.
IT is NOT an exact science and you will find many differences even in what doctor's recommend and/or do.
Each person is different also.
I have improved many fold using MY techniques that I have learned in the last few months.
I am not telling you WHAT to do. Each person MUST decide for themselves what is best for THEM. You will get as many answers as there are people on this board; for the most part. Pick and choose what you think will work for you. I have.
There appears to be SOME room for experimentation. The docs sure do. IMHO you are "smart" to have been using the Healing Lyme protocol. IT is much easier on the rest of your system than many other protocols.
But again, YOU must decide for youself, once you get info, try things, and see WHAT works for YOU.
See LLMD. If he thinks you need an MRI, then get one.
With a western blot like that and your symptoms, I wouldn't be too worried about ALS. Your symptoms are extremely lyme-ish, and you had steroids on top of it.
Not a medical professional. Just my opinion, a'course.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
LostCityAgent
Unregistered
posted
Thank you Stan for your message.
After looking at your sequence more clearly I would strongly suspect LD, as the others say, especially with the blood clues.
for your info, when you get a PM, private message from John, it goes into your HOME email system.
If you want to keep his or anyone else's PM to you, start a FILE there to keep.
PM will have the thread for you to respond. Please go there and read that note, then DELETE since you have it in your HOME file system.
You are allowed ONLY 60 NOTES in your PM, and it fills up fast!
Here is another possibility of a good LLMD in Minn. that I started going to 4-20-06. I put an update in medical today on ALL BODY LAB TESTS done plus $$ paid by medicare.
Look it up IF you are interested in going to Minn. vs. Missouri. I understand Wisc. has 2-3 good LLMDs.
I'll copy/paste some newbie info here for you.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
IP: Logged |
posted
I, personally, would see the neuro first. I hate them but I think it's important to rule out MS/ALS. These are easier to diagnose then lyme. I doubt ALS as it doesn't "come and go". It stays and continues to progress. MS symptoms do come and go. If they find "nothing objectively wrong" then I would see a llmd.
Just my opinion.
Posts: 340 | From Ohio | Registered: Oct 2005
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hey, Stan
I had symptoms very similar to yours and spent about 6 months pursuing a diagnosis from non Lyme-literate doctors.
The neurologist did a brain MRI which was negative, despite my compromised speech and very impaired memory and thought processing.
With Lyme, timely treatment is really important. My thought would be to see a Lyme-literate doctor first. If that doesn't pan out for whatever reasons, yo can always double-back and see a neurologist.
That's just my thinking, based on my own experience.
You may want to do a search on this board re the two doctors you posted. Dr. C, if I remember correctly, has gotten really excellent (and consistently positive) feedback here. Not familiar with the other doctor you mentioned.
I'm glad you're here and getting help!
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
posted
I have an appointment with a neurologist today.
It can take months sometimes until you can get in to see a LLMD. So, in my case, I'm seeing a neuro in the meantime(have a LLMD appt. in July).
It may be a waste of time but I'm keeping an open mind. I have good health insurance too, so it won't cost me a thing. I know, I'm lucky.
Posts: 366 | From MA | Registered: Apr 2006
| IP: Logged |
posted
I would not bother with a neuro doc first, they were usless to me, and would not diagnose me with lyme to save their life!
Your WB looks pretty postive for Lyme to me!!!
You have tons of IND and + on alot of specific bands. ( 23-25, 34, 39 )Whoever is telling you you don't have lyme doesn't know how to read a Western Blot!
Have you ever had a pregnancy test that was just a little positve???? Ok so your just a little positive for lyme....Hummmmmmmmmmm
Do you have any information about the LLMD that I mentioned in Western PA? If so can you PM me any info about that LLMD? I know more about the one in MO.
Thanks, Stan
Posts: 59 | From Indiana | Registered: Jun 2006
| IP: Logged |
Thanks for the info. Right now it is good to hear from others who have been down the road I am walking. I am as sure as I can be that I am dealing with Lyme but at times it gets difficult without professional guidance and no clinical diagnosis.
I also feel a sense of urgency to find out for sure because my wife has been dealing with a dry persistent cough for about six months. The PCP had her tested for asthma last week and from that test they want to send her to the same neuro I am considering visiting. The overall asthma test result was ok but her test showed decreased maximum voluntary ventilation. She now tells me that she gets short of breath walking up stairs and talking on the phone. She didn't tell me of this until recently.
Nine or so years ago when I developed the migratory joint problems I also came down with a dry cough and they treated me for mild asthma or seasonal allergies.
As I piece this puzzle together, I find it very coincidental that my wife is now experiencing a dry persistent cough.
Am I being overly cautious and trying to connect dots that aren't there?
You can see now with all that is happening, why I feel that I probably need to get additional help from an LLMD.
I could also go into the fact that my 11 year old boy complained all last winter of knee pains and every month he came down with a fever and stiff neck (at least 3 times last winter). We would get antibiotics to get him back to school.
Am I reaching for straws by wondering if Lyme is affecting more than just me in my family?
Thanks once again,
Stan
Posts: 59 | From Indiana | Registered: Jun 2006
| IP: Logged |
posted
Just remembered another big symptom that I have experienced in that past year was numbness and tingling in arms, forearms, and some numbness in my face. Also stiffness in hands and wrists.
Sorry I keep adding symptoms, there have been so many I just keep remembering more that I failed to mention in original post.
As I said, I am currently doing much better with the natural protocol but I still experience symptoms from time to time and even daily on a low grade scale. Maybe a 2-5 out of 10.
Thanks,
Stan
Posts: 59 | From Indiana | Registered: Jun 2006
| IP: Logged |
I'm sorry to hear about your son being in pain. I would definately have him tested. My 3 sons have LD.
My one son's main symptom was leg/shin pain and he would run low grade fevers for no reason and be nauseous after he ate. I really never thought of the things he went through as being "not normal" because I had these symptoms for years too. I was used to being in pain and had "growing pains" as a kid too.
Boy was I wrong. After I was diagnosed I realized all my kids were sick too. I then recognized the symptoms in them. They are all getting better today.
My other son and myself had a dry cough for long periods of time. But not since we've been in treatment for lyme. Thats gone!
I think you are NOT grasping at straws. You ARE headed in the right direction to get your family well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
JimBoB
Unregistered
posted
quote:Originally posted by Alias24:
As I said, I am currently doing much better with the natural protocol but I still experience symptoms from time to time and even daily on a low grade scale. Maybe a 2-5 out of 10.
Thanks,
Stan
Stan, You WILL experience symptoms from time to time with the natural protocol. BUT a lot less than you will with abx.
It sounds like you have had this a long time, therefore, NOTHING is going to get rid of it right away.
The one GOOD thing you are doing is Buhner's protocol, which will be eliminating much of the Lyme bacteria in you, while you are waiting to see an LLMD.
I am glad for you, that you got a head start on your "healing" process. Keep it up. Your chances of beating this thing are much better as long as you keep taking the herbs. Whether you take abx or not with them. Your choice.
I like the protocol in the Healing Lyme book for Lyme, but am not personally convinced that it is effective against Babesia or Bartonella.
I think Dr C would be a good match for you -- hubby sees him. Hubby is currently taking medication for Babesia, but also some of the herbs from the Healing Lyme book plus colloidal silver (Argentyn 23). Why put all your eggs in one basket as the saying goes? Actually I think a combination of protocols is more effective than just antibioitcs or just herbs.
Another reason to see an LLMD is for disability purposes if this is an issue -- need medical records to document extent of disability.
Hubby tried the herbal protocol 1st from a different doc and wound up in the hospital I think it was 4 times in a month -- had elevated protein in spinal fluid and started in with seizures -- unfortunately his chiropractor who was supervising the treatment could not prescribe any symptom control meds.
One of the things we like best about Dr C is that after the initial appointment you only need to see him a couple of times a year. He has a great staff who respond to calls and faxes and any questions you have in between appointments. Works really great if you are the type of person who wants to be in control of your own treatment plan with guidance from a doc.
Hubby saw 14 neurologists -- 13 didn't know anything about Lyme -- the 14th was a LLMD neuro who was somewhat helpful, but missed the coinfections.
Actually one of the neuros hubby saw was Dr R (a lady) who was supposed to be an infectious disease neurologist at IU. Told hubby he had a beautiful brain (has 4 or 5 white matter lesions) and gave us a list of 5 reasons hubby could not have Lyme Disease -- one of our favorites on the list is that "tremors are not a symptom of Lyme disease."
As a general rule neurologists at the Universities and big name hospitals are the worst for not knowing anything about Lyme and tick-borne illnesses.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
I have an appointment with Dr. C on July 24th. I tried to make an appointment with Dr. S, PA who treats with natural products and antibiotics but I can't get in to see him until Sept. I am waiting on the Neuro until after I see the LLMD.
No real problem with going to the Neuro. since they could help to elminate possible causes of my problems, it is just more of a cost issue for me.
I work at a hosptial and I have insurance but the Neuro. and the LLMD's are out-of-network so it will only cover 50% after my deductible.
Last year I spent alot of money to have my silver amalgams replaced and that is why I have put off seeing an LLMD plus I have had some positive results with herbs.
Since I originally posted, I have had a lot of symptoms flare up so I need to do something more or just understand that this is the process.
Thanks.
Posts: 59 | From Indiana | Registered: Jun 2006
| IP: Logged |
posted
Bea is right about many things....read her post again!!!
You will get great help from Dr C.
I would stear clear of any of the major hospitals. One you mentioned has said they "don't do lyme"... and would never dx it, for sure.
Keep reading on this site!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
JimBoB
Unregistered
posted
Stan:
I just read this NOW, AFTER answering your PM.
I have re-read this thread in it's entirety.
Lots of info here.
IF it were me, I would expand the Buhner Protocol and see WHAT happens for now.
Also from MY experience, and having the choice, I would do everything in MY power to opt for seeing the LLMD who treats with BOTH herbs and abx rather than the one who does abx ONLY.
Your herbal protocol, the BASIC Buhner protocol, is NOT enough in MY estimation. I would expand it according to what he recommends FOR NOW.
IF you can come up with the money, then see BOTH LLMD's. You can always drop the MO one, IF you don't like him after you see the other LLMD in PA. OR maybe see Dr. K out in Washington IF you can see your way to do it.
But the MORE HERBS and LESS ABX you can use, will be better for your health in the LONG RUN. There are much less adverse side effects on the Buhner protocol than with any abx treatments.
I have strayed a little beyond Buhner's Protocol. But this past week, I got in trouble, a little. Taking a very strong herb, not in Buhner's book, called Coptis. It must be sued with caution, and I guess I didn't use enough caution; So now have a lot of neuro-symptoms.
I have stopped ALL herbs for today, except Sarsaparilla, Garlic, and Periwinkle tincture. ALSO keeping up with Red Root tincture and Milk Thistle to keep detoxing. Also not quitting C-Salts and vitamin E.
Keep working at it. Has your wife and son been tested yet for LymeD?
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Alias24
Glad to hear you are going to see a LLMD>
Just want to caution you with your neuro doc appointment that you don't get slapped with an ALS/MS mis-diagnosis.
Lyme is called "the great imatator" and many of us have been incorrectly labeled with these disease's and because of that have delayed our lyme treament and prolonged our suffering.
Good luck on your road to wellness wherever it leads you.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Cool]](cool.gif)
Printer-friendly view of this topic