I spent a long time here back in 2006/2007 when I was treating for Lyme. I was diagnosed after being very ill for a year. I had been to both ALS clinics in San Francisco and cleared, finally an oncologist suggested blood work for lyme and other tick diseases, sure enough it was CDC positive. It took over a year for a diagnosis and by then it was neurolyme. The good news is after one year of IV Rocephin and one full year of antibiotics I looked to be in the clear and was feeling 90%.
I got two full years with no treatment and then I found I was treating once a year for three full months to combat symptoms that creeped back.
In 2012 I noticed severe muscle atrophy at both ankles. I saw neuromuscular Dr.'s at Stanford and University of Pennsylvania. Both cleared me for ALS or muscular issues but neither had any clue what the atrophy was about.
I have had three cervical fusions in my neck. They were in 1993,95 and 2000. I saw my neurosurgeron who was clueless but didn't think it was back related.
Fast forward to now I am showing atrophy in both thumb areas. Not nearly as significant as the ankles but noticeable. I saw my neurosurgeon who said it could very well be related to the surgeries.. I went to a neurologist at UCSF who gave me a clean neurology exam.
I am so overwhelmed that it is ALS I have now had my primary get me an appt. at one of the ALS clinics here in San Francisco. I have severe cramping in my one leg and foot. The only Hallmark symptom I do not have is No muscle weakness.
I can still walk 5 miles daily and do the elliptical.. I wonder if the antibiotics could be to blame???
I have my Lyme Dr. standing by in case I need three months of treatment. I just hate to put the antibiotics into my body unless I feel it's absolutely necessary.. Your thoughts???
Posts: 281 | From san francisco | Registered: Jun 2006
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi, I am so sorry to hear about the ALS symptoms.
Which coinfections have you treated?
High strep titers, mycopllasma, babesia are all coinfection present in tested ALS patients.
Not all ALS patients get tested for those obvioously, but the ones that do seem to have those bugs in common.
A big one known for muscle wasting is babesia.
Most lyme docs nowadays will treat babesia bartonella and borrelia, even if sero negative.
There is also a few LL docs who treat a lot of ALS patients. Maybe in Seeking on this forum?
Also, relapsing every 3 months sounds like the treatment is not very successful OR is bacteriostatiic only against the particular bugs you have... As soon as the abx is removed the bugs keep reproducing.
Another thing is mycotoxins. Has your doc treated you for mycotoxins?
This made a huge difference for me in some of my more troubling symptoms.
Best wishes Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Doesn't seems like ALS. You'd worsen much more quickly. Be dead in fact by now. I also get muscle weakness. Right now in my hands. I can barely hold a cup. It usually goes away though this time it's lasting a while.
Hang in there.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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posted
When I was finally diagnosed I also had erlichliosas. That cleared up with antibiotic treatment. From what I've read of Dr. Burrascano's guidelines babesia is not always picked up on testing (I think I read this). If I remember my lyme Dr. treated me as if I had it as well. I wish I kept a journal of my antibiotic treatment. When I was treating I was truly naïve and thought everything would be gone at the end. I am going to go to my pharmacy and have them run off a list of all the antibiotics I took since 2006.
I was told upfront before treatment that I may have to treat whenever symptomatic since it usually is with you all your life.
Thank you for the replies. It's much appreciated.
Posts: 281 | From san francisco | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- sfcharm
You say that you are going to "go to my pharmacy and have them run off a list of all the antibiotics I took since 2006." (end quote)
That could raise a loud red flag for the person doing that check, especially if they are new an on the "no antibiotic" campaign. And it may mean trouble for the prescribing doctor.
Your medical files will have that detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The real smoking gun without bullets in the medical community...Fluoroquinoline antibiotics. Doctors prescribe these drugs as a cure all without warning patients. These drugs are put in IV's before surgeries without warning of all the adverse reactions.
Given to you with small black box warnings. Then doctors deny the adverse reactions and blow you off just like Johnson & Johnson and Bayer does. You are lucky to get diagnosed with Fluoroquinoline antibiotics toxicity.
You are sick and don't know why. The doctors tell you that you have Fibromyalgia or Lyme disease. Check you RX record for Cipro, Levaquin, Avelox make that connection. Visit The Fluoroquinolone Wall of Pain on Facebook. Click on photos and then click on the face to see what these drugs have done to people. Know the risk! Make the connection!
Musculoskeletal: Tendon pain Tendon rupture Joint pain Popping/cracking joints Muscle pain Muscle weakness Muscle wasting or muscle atrophy. Muscle tightness/contractures Back pain Exercise intolerance Loss of padding on palms or bottoms of feet. Accelerated spinal disc degeneration. Inflammation of the rib junctions with the sternum [Costochondritis]. PNS – Sensory and Motor: Tingling, prickling, pins&needles, or numbness, bugs running on skin, water trickling, fabric moving, in arms or legs. Burning pain in arms or legs (this can also be tendinopathy, but mark here anyway). Feelings of electrical zaps, shocks, or deep stabs, in arms or legs. Buzzing, in arms or legs. Pressure, squeezing, or “band-like” feelings, in arms or legs. Pain with normally non-painful touch or hypersensitivity to pain (allodynia, hyperalgesia). Teeth, mouth, or lip nerve pain, of any kind (shocks, tingling, buzzing, etc.) Facial nerve pain of any kind (Trigeminal neuralgia). Squeezing feelings on head, "Head pressure" feelings. Muscle twitching of small pieces of a muscle independently [Fasciculations]. Muscle twitching of whole muscle body (Tremors). Neuralgia (pain along nerve trunk lines). CNS: Insomnia (difficulty falling asleep). Broken, interrupted sleep. Reversed sleep schedule (sleep during day, awake all night). Panic/Anxiety Brain Fog (see category below). Abnormal dreams Headaches Depersonalization Depression Thoughts of suicide. Agitation / personality changes. Hallucinations Seizures CNS – “Brain Fog” Symptoms: Memory difficulty of long-term memories. Memory losses of short-term memory. Aphasia (difficulty remembering words or spelling words). Psychosis Inability to comprehend situation or surroundings; Confusion. Inability to process and comprehend all visual input. Slowed or impaired thinking. Attention span problems. Difficulty following instructions. Dermatological: Itching [Pruritis] Dry skin and dry patches. Hair loss [Alopecia]. Loss of collagen in skin; sudden development of extensive wrinkles on face, hands. Raised ridges down fingernails. Diagnosed with psoriasis or psoriatic arthritis. Skin rash Poor wound healing; reopening scars or cuts or (internal) surgery sites or meniscus tear. Easy Sunburn [Phototoxicity]. Gastrointestinal: Difficulty swallowing [Dysphagia]. Abdominal pain Persistent Softer stool lasting more than 2 weeks. Persistent Diarrhea lasting more than 2 weeks. Persistent Constipation lasting more than 2 weeks. Delayed gastric emptying [Gastroparesis]. Chronic nausea lasting more than 2 weeks. Acid reflux lasting more than 2 weeks. Bloating / Gas / Abdominal distension. Undigested food in stool. Foul / unusual smelling stool. Persistent oral candidiasis (aka “thrush”). Food sensitivities Inability to digest food [Maldigestion]. Vision: Eye focusing problems. Dry eyes [Keratoconjunctivitis sicca, Xerophthalmia]. Light sensitivity [Photophobia]. Floaters Visual acuity decrease. Double vision [Diplopia]. Black specks Drooping eyelids [Ptosis]. Retinal tears Ear Nose Throat: Ringing in ears [Tinnitus]. Dizziness, visually looks like room is spinning (Vertigo). Lack of physical sense of balance, feeling like being on rolling boat [No Equilibrioception]. Hearing sensitivity to low noises increased [Hyperacusis]. Hearing loss Ear wax reduced or replaced by dry grit. Dry mouth [Xerostomia]. Taste perversions [Dysgeusia]. Smell of odors increased [Hyperosmia]. Smell things not there [Phantosmia]. Difficulty speaking, producing vocal sound [Dysphonia]. Cardiovascular: Heart palpitations [Dysrhythmia, Arhythmia, Tachycardia, Bradycardia]. Poor peripheral vascular circulation (cold feet/hands). Heart rate at rest above 100 beats per minute [Tachycardia]. Swelling limbs [Edema]. Purple or red spots under skin esp. in limbs [Purpura, Petechiae]. Easy / excessively large bruising. Swollen veins Sudden change in hand color, with severe coldness and numbness lasting a few minutes [Raynaud's phenomenon]. Low blood pressure, including Postural Orthostatic Hypotension (POTS) [Hypotension]. High blood pressure [Hypertension]. Extended reduced need for asthma or bronchodilator medication. Additional Autonomic Nervous System (Dysautonomia): Lightheadedness Shortness of breath (Dyspnea). Sweating inappropriately much for environment [Hyperhidrosis]. Lack of sweating, even in hot environments [Hypohidrosis, Anhidrosis]. Sweat or body odor changed or increased (sometimes described as “sweat smells like ammonia”). Pupils don’t dilate appropriately for night/day lighting [Pupillary dysfunction]. Endocrine: Feeling cold consistently. Unexplained weight change (usually loss). New thyroid abnormalities. Hypoglycemia Diabetes [Hyperglycemia] New endocrine abnormality other than above. Urinary System: High-volume urination of up to a gallon a day and Excessive thirst [Polyuria, Polydipsia]. Frequent urination, but not of high volume [Polyuria]. Delayed start of urine stream, chiefly affects males [Urinary hesitancy]. Urinary incontinence, chiefly affects females [Enuresis]. Inability to feel bladder fullness [Atonic bladder]. Rhabdomyolysis Purple, brown, red, or frothy urine [Renal pathology]. Reproductive: Loss of male libido [Male hypogonadism]. Loss of nighttime / morning erections [Male hypogonadism, Erectile dysfunction]. Low testosterone [Male hypogonadism]. Reduced ejaculate Testicular pain Penile tissue changes (narrowing, shrinkage, wrinkled). Difficulty achieving orgasm (both males and females). Ovarian cysts Missing menstruation 3 months or more [Amenorrhoea]. Dry vagina esp. during intercourse [Vaginal dryness, Atrophic vaginitis]. Heavier/longer menstrual bleeding. Dental: Softer oral gum tissue or abnormally bleeding gums. Broken teeth Many new cavities. Tooth pain Other new dental problems.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Check if you've taken the generics too like levofloxacin.
The one I picked up didn't list all the effects. I believe it's because it was the generic levaquin.
No black box warning on the package I picked up either.
Posts: 2839 | From California | Registered: Jul 2012
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Phoiph
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Member # 41238
posted
sfcharm...
You mention requesting an appointment at an "ALS clinc" near you...are you referring to the AMEN clinic, by chance?
Posts: 1924 | From Earth | Registered: Jul 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Dry vagina esp. during intercourse [Vaginal dryness, Atrophic vaginitis]."
Yikes! For some reason the sound of "atrophy" there really freaks me out.
I don't like the other reproductive ones either (talk about the anti-viagra drug or anti-spanish-fly drug).
Unfortunately for me, I'm having a lot of bad effects from the levaquin and a lot are on there.
Posts: 2839 | From California | Registered: Jul 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I'm impressed that in the past at least, you were not tagged with some "atypical" ALS label. Even a doc who then sent you on to get checked for lyme. Wow. You found some rare docs.
Yes, lyme can cause muscle wasting, even in people who didn't have any cipro, avelox, type drugs. And it can come on later in lyme or earlier. Some of these people, if caught not too late, improve with antibiotics. So, from that fact, you will see that it is not the drugs that were causing the wasting, but the underlying disease.
I would not rule out lyme in your case. You may not be so lucky with the ALS clinic this time, and anyway, there is nothing at all they can do to treat ALS.
Posts: 2888 | From USA | Registered: Mar 2004
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Phoiph
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Member # 41238
posted
I agree that You were fortunate to have not been given an automatic ALS "label", and advised to check for Lyme.
I do want to make a point regarding ALS, however, that it is now becoming better understood by certain docs and cases successfully treated:
posted
No the ALS clinic is one of the teaching hospitals here in San Francisco.
I received a Normal exam from UCSF neurology dept. I am the one who requested going to the ALS clinic to rule it out. However my primary Dr. does not believe I have it. She only made the appointment to appease me. I personally believe I need to hear it from their neurologist that I don't have it.
The only thing that is new for me is the muscle atrophy in limbs and vibration in right leg.
Other than that I am stable. I do remember my old primary talking to me a few years back about long term antibiotics. She said she knew of a patient who was on flagyl for a lengthy period who ended up with foot drop. That patient never regained use of the foot.
Thank you so much for all the replies. As you all know it's an emotional roller coaster having lyme disease.
Posts: 281 | From san francisco | Registered: Jun 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Get your drug list. You'd be surprised at how many drugs cause the problems you described.
Go to askapatient.com and look at reviews of your drugs.
I just ran across this post that showed tests that confirmed muscle wasting from fluoroquinolones. If you don't know if you have it from that, it seems like these are good tests anyway:
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If you have not treated for parasites it might be a good idea to look into this often overlooked co-infection.
Google parasite symptoms and check out the PARASITE WARRIORS SUPPORT THREAD. A lot of folks her that had chronic Lyme found that they were infected with untreated parasites.
According to some researchers Over 40% of ticks are carrying the Filarial worm co-infection along with other parasites. www.lymephotos.com
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
My G..., Tutu! When I see the list of what such fluroquinolones may do to you, I wonder why changing lyme for those symptoms? Which are worse?
Posts: 6199 | From Brussels | Registered: Oct 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Speaking from experience, fluoroquinolone toxicity is worse.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Had my appointment at the ALS clinic in San Francisco and it was ruled out. I have a great sense of relief..
Dr. could not confirm what the atrophy is all about. He felt it was tissue atrophy versus muscle, which was interesting. I always thought it was muscle loss.
Thanks again for all your replies and support. It is so much appreciated. Lyme is such a sinister disease, it surely wreaks havoc on you.
Posts: 281 | From san francisco | Registered: Jun 2006
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posted
I have not eliminated sugar from my diet and need to. I eat very healthy meals but ruin it all with sweets...
My Lyme Dr. gave up all sweets and recommends I do the same! I truly believe it's time..
Posts: 281 | From san francisco | Registered: Jun 2006
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
What about protein and good fats?
Also, have you had your hormone levels (e.g. testosterone, etc.) checked?
Posts: 1924 | From Earth | Registered: Jul 2013
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