I have a clinical diagnosis of early ALS and late stage neuro Lyme. I'm currently on Rocephin IV and have improved greatly. I still have muscle weakness in my arms. Since my symptoms have improved so much, does that mean I don't have ALS? I've heard of patients improving on this drug only to die from ALS after stopping. Can I ever really be sure the ALS won't return?
I don't know anything about ALS except what I read, but the overall statements are that there is no cure, but perhaps symptomatic support. Therefore if you are responding to Rocephin, then I'd ask the MD if that means you don't have ALS to start with.
The medical profession has such an aversion to diagnosing Lyme that it does not surprise me that people are given diagnoses of vague conditions like fibromyalgia rather than admit that the current, mainstream definition of Lyme is too narrow. Perhaps your diagnosis of ALS was made because your MDs take such a narrow view of Lyme that they cannot account for your condition without expanding the diagnosis to include ALS.
It is interesting then that you have a diagnosis of 'late stage neuro Lyme' along with the ALS.
===> I am NOT medically trained and don't want to mislead you into relying on anything I am saying or that others say here, but my best advice to you would be to find a Lyme specialist for an evaluation. It is very good news that you are responding to treatment, and Lyme is treatable. In your situation, I would be finding out what's really going on so the treatment can be adjusted, if need be, to address the Lyme.
Woodsy Massachusetts where you are definitely has Lyme, and you should be able to find a Lyme specialist nearby, even if your insurance doesn't pay for it. What price health, after all?
Go for it -- it's wonderful that you are feeling better, and in your situation, I'd be finding a Lyme specialist for a work up. Let us know how you do. Best wishes!
Sorry, I spoke too soon. I've just dug around on the internet and see that there is a study underway on the use of IV Rocephin (ceftriaxone) to treat ALS. The report I read was at the end of the first two parts of the study, and the third part is underway now.
You mention in your post above that you have heard of some patients improving and then relapsing after stopping treatment. Because the study is still underway, I would guess (but your MD can tell you for sure) that the docs aren't sure until the study is done and analyzed.
Now back to my original thought: IV Rocephin (generic: ceftriaxone) is a treatment for Lyme disease too. If you have both Lyme *and* ALS, and since the same med is effective in both, maybe that's why you feel better.
The second possibility that comes to mind is that mainstream medicine is so keen NOT to diagnose Lyme, that somewhere along the way one of your MDs may have diagnosed you with ALS *instead of* Lyme. (I have no way of knowing what happened, but just want to throw this out here for your consideration.) Not that having Lyme is a picnic, but easier than having two maladies, Lyme *and* ALS.
My suggestion would still be to find an LLMD (Lyme specialist) and have him/her review your records and see if there are any further steps to take that might clarify things or point a new treatment direction for you ... like more Rocephin or other meds, since you are feeling better after taking it.
Wishing you the very best going forward -- let us know how you do, okay? Take care.
First, I am very sorry about your ALS diagnosis. I commend you for questioning and researching for other possibilities.
I don't know if/how ALS could respond to antibiotics, which is not to say that can't, I simply don't know. I know that some antibiotics can act as anti-inflammatories, which could cause relief even in the absence of infection.
The name that comes to mind in regards to ALS/Lyme is Dr. David Martz. He was diagnosed with ALS, but was treated for Lyme disease and improved. He was featured in the Lyme disease documentary "Under Our Skin," and I also found this online video of him:
I think that his case was an exception and not a rule, but it is an amazing tale. If you want to research more about possible Lyme/ALS connection/misdiagnosis, his name may be a good lead. I believe that he is retired now, but I think he did treat a number of ALS patients with antibiotics.
Best of luck to you, if we can be of other help (as medically untrained but caring individuals) let us know!
The greater question is what constitutes an ALS diagnosis. and what (limited) knowledge does the medical/research community have of its etiology. Lyme disease does mimic ALS, MS and other diseases & disorders.
As Wonko mentioned, the president of ILADS (Dr. Martz), who was on the brink of an ALS diagnosis himself before he began Tick-borne disease treatment, feels that ALS presentation with a tick-borne etiology is most-likely
Lyme + a co-infection (babesia)
Given that you have both an ALS and Lyme diagnosis, you are probably best to find a LLMD to investigate co-infections, including babesia.
"Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy" (about ALS)":
Babesia is a malaria-like disease.
Here are video clips of this MD's personal story(one being a repeat of Wonko's above). Unedited so there are multiple "takes" within the footage.
He mentions how some cases of ALS are obviously "infection-triggered" and that it has also been seen in HIV patients.
I BELIEVE (don't quote me) that he stated that of the ALS patients he saw before closing his practice, 15% improved with treatment for tick-borne diseases.
"an idea serpentined around his mind and would not loosen its grip: Despite the absolute diagnosis and the insistence of the doctors, including a world expert, that he was dying of ALS, despite his own vow to face things head-on and reject the lure of denial, Martz couldn’t shake the notion that possibly, just maybe, he actually had Lyme disease. (from "Cure Unknown: Inside the Lyme Epidemic," by Pamela Weintraub.)" _________________________________________________________________
Donna Castle who spear-headed the "Ticked Off" lyme support group in Ayer, Mass -- her daughter was originally dx'd with ALS at the age of 25 but was re-diagnosed with tick-borne disease and has progressively improved with treatment. I believe there is at least one other who has been involved in that group who received the same diagnosis(ALS).
I would suggest asking questions within a small e-list group on yahoo groups. It's mostly an advocacy and activism group but some folks should be able to provide local/state-relevant feedback.
Thank you for all your comments and help. I continue to improve although I am allergic to Rocephin and am dealing with minor rashes. My LLMD is reluctant to treat coinfections at this time due to the allergy and feels I need to stay on the Rocephin as long as possible. I will continue to hope I have treatable Lyme and try not to give in to my panic attacks. Please keep me informed of any new ALS/Lyme information and I will post my progress. Hopefully I will give hope to someone else as well.
I don't know if this applies to your situation, but sometimes giving a Lyme+ patient an antibiotic will cause a rash to appear even if there had not been one before ... and it's not because of a reaction to the antibiotic, it's a sign that the antibiotic is killing the bacteria.
Lyme is definitely treatable, it's just harder for some people to kick it than others.
Depending on which coinfections a patient has, MDs sometimes treat the coinfections first -- my MD did that when I had Lyme and Babesiosis, which is like malaria. That's why getting tested for the likely coinfections is done early on, because treating Lyme itself can take a while in some people.
I have a friend who's dad had ALS. He did not respond to any treatment. From what i recall, he was on many "treatments". This could be a very good thing for you. Think Positive and stay strong. Push your doctors. My LLMD has treated many patients who were diagnosed with ALS, they have since recovered from some or most of theri symptoms and are able to function without the assistance of a walker, wheel chair or other support systems.
who is your llmd? i have been seeing dr c in mt kisco, ny. it isn't going very well, i seem to be allergic to the adhesives covering my picc line. i also don't feel as good as i did on the rocephin. my drug insurance will only pay for powdered ceftriaxone.
With a statement from your MD, your insurance company might approve rocephin. Rules are made to be bent and overridden, and the insurance company has to balance cost of the right meds against you getting well and therefore not costing them money for a longer time, to be dollars-and-cents about it ... they have an economic motivation to get you well fast, and if Rocephin is what does it and/or does it faster, logic says they would approve it. (I know, insurance and logic don't live in the same town, but might not hurt to try.) Best wishes --
Hello my name is jeff and for the past several months have been experiencing symptoms of lyme. My symptoms are classic fatigue burning and stabbing sensations throughout my body mild fevers insomnia sore ribs trouble with my respitory system and the list goes on. My problem is my tests come out false negative when in my heart i know im suffering from lyme.Could someone give me some advice im desperate Im from West Warwick RI My doc is Fred Silverblatt from RI infectious disease seems to be very knowledgeable on my first week of doxy getting a little nervous at times i feel like im on my death bed getting a little nervous why do the test come out negative? This is totally destoying my family my job health and sense of reality as i write this im experiencing burning sensations throughout my body Im desperate its been going on since last july most docs i see say its anxiety and want to put me on meds when deep im my heat i know its not Ive always have been a athlete strong and healthy was running 5 miles a day whats going on ? Can anyone please help I can be found on facebook Jeff R from Rhode Island i drive for a company called Ripta Rhode Island public transit Thanks Jeff R
Welcome to MedHelp Lyme -- Sorry to hear what you are going through.
Negative test results are NOT uncommon, because the usual tests are not very accurate, but docs tend to rely on them as the last word. I'm sure your doc is very knowledgable in infectious diseases generally, but there is a serious split in the medical community about how serious Lyme is or is not and how to test for and treat it. Infectious disease MDs usually follow the standards set by the Infectious Disease Society of America (IDSA), of which you doc is probably a member.
There is another similar group, called International Lyme and Associated Diseases Society (ILADS), but it sees Lyme disease very differently from the IDSA. ILADS docs tend to use different tests that are more likely to pick up evidence of a Lyme infection, as well as to test for other infections that the Lyme ticks also carry about half the time.
Doxycycline is the IDSA standard treatment for Lyme, usually for a few weeks. By contrast, ILADS docs may use doxy very early in a Lyme infection, but also (especially if some time has gone by since you were bitten) will use other meds in combination, because Lyme bacteria have the ability to hide in the body where the immune system and doxy cannot reach effectively. Note that I am not medically trained, but these approaches to practice are often used by ILADS docs. You can see their rather lengthy guidelines for diagnosis and treatment at ILADS [dot] org, particularly Dr Burrascano's treatment guidelines.
It is however a complex situation, and my best recommendation is to find an ILADS-type doc for a second opinion, and not to wait. There is no reason you cannot see an ILADS doc at the same time to are following along with your current doc until you decide which doc to pursue treatment with, but your current doc may be offended if he knows you are seeing an ILADS doc, partly because nonILADS docs often believe that ILADS docs are committing malpractice, and the nonILADS docs do not want to be associated with that for obvious reasons.
In other words, you can get a second opinion, but will need (in my untrained opinion) to decide which doc's treatment to go with -- it's not feasible to pursue both treatments at the same time.
The anxiety you are experiencing is very common in Lyme disease -- it is a biochemical effect of the infection itself, it is not because you just wigging out. The other symptoms you report are also not uncommon in Lyme, tho each of us is a bit different, partly because of our immune system differences and also because of the mix of co-infections (other diseases) you may also have, and from different strains of Lyme in various geographic areas. That's part of what makes Lyme and its co-infections hard to diagnose: everybody's symptoms are different, and may vary over time.
Here is a CAUTION: we do NOT post names or locations or personal information about ourselves here, and we don't post ANY doctors' names here in the open. It's for your confidentiality, and it's also to protect the Lyme docs who are often pursued by local and state medical boards for treating Lyme in ways that so-called mainstream medicine (IDSA, like your current doc) does. You should also not give out your contact information here, as you did above, simply for your privacy and safety.
It's not possible to change or delete your post yourself, but you may want to contact MedHelp and ask them to edit or take down your post. This Lyme page does not have a regular moderator, but we can find a way to get a message through to the MedHelp gurus if that would help, esp. when you've a few other things to deal with.
You can do two things right away to help find an LLMD near you:
1 -- email to
contact [at] ILADS [dot] org
and tell them where you are (city and state) and how far you can travel to see an LLMD. They will send you back one or more suggestions. If those don't work out, email them again and tell them who you contacted but it's not a fit and please send more name9s).
2 -- Repost your message (deleting your doc's name, your full name, your email address, and any other personally identifiable information) as a NEW message, not tagged onto the bottom of an old thread like here.
To post a new message, go to the top of the MedHelp Lyme page and click on an orange-brown box called 'POST A QUESTION'. Then post your current message, minus the personally identifiable information under a title like "NEED LLMD IN OR NEAR RHODE ISLAND". That will get people's attention directly.
Let us know how we can help and how you do, okay? Hang in there -- we've all been where you are, and it is definitely worth fighting to get better. Keep us posted --
PS I just sent a private message (PM) to the moderators here telling them about the personal information accidentally included in your post, in case you can't figure out how to get through to them -- it's not the easiest site to navigate, and I remember well when I was so sick with Lyme that I couldn't figure out how to tie my shoes (or if they even had shoelaces at all). So if you see your post get edited or disappear, not to worry.
And if you don't have a copy of your post as you submitted it, post a message above or send me a private message and I'll send the text back to you so you can edit and repost it without having to re-create it again.
The 'private message' function to send me a message is in the upper right corner of this screen:
Inbox | Logout | My Shortcuts
Click on 'Inbox', then in the middle of the screen where it is white instead of blue, click on 'Compose' and then type the exact screen name of the person you are trying to send a message to. My exact name is
with NO spaces in it. Then type the message and hit 'send' or whatever it says at the bottom of the screen, and it will come to me privately through this system. No need to get me involved in this unless it's helpful to you.
I had many of the same symptoms you describe, including the pain and desperation. I also tested "negative" in a blood screening test, and a CSF test. I was told by multiple doctors I didn't have Lyme because of my tests, even though no one had any other answers for me.
I convinced my PCP to authorize IGeneX (a tick borne disease specialty lab) testing for me, and then I went to an LLMD where I got diagnosed. I have also been diagnosed with Bartonella and Babesia. While IGeneX said I was positive on my Western Blot, I was still CDC "negative" as I showed other Lyme specific "bands" on the test that the CDC ignores.
Infectious Disease docs won't violate the IDSA "guidelines" as it will threaten their ability to practice if they do. While the guidelines are supposedly optional, they're not optional for ID docs. If you test negative, an ID doc is extremely unlikely to diagnose you.
You'll need an LLMD, one who follows ILADS protocols, as Jackie suggested. You can also ask a local Lyme support group for suggestions. They'll know who is good and who isn't. Call now, as many of them have waiting lists.
I am so sorry you're struggling with these symptoms. It does sound like Lyme. I hope you can get a definitive answer soon! Keep us posted!
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