Not saying I'm going too...But am starting to take a new journy you could say to new doctors and specialtys to rule out anything and everything possible. I'm going to an infectious disease doctor Tuesday to get certain test done and then am finding an LLMD Lyme-Literate doctor to began those test the proper way. I have been talking to the Lyme community and researching my butt off and my symptoms of MS match theres and the ones that don't match MS match theirs so I'm going to try to rule that out.
The infectious disease doc. not so worried about...i been told how most treat people you could say..so I'm more focused on the LLMD who will actaully listen to me. But my concern is if they tell me to take these anti biotics that would mean i would have to stop taking Avenox even if they are not 100 percent sure....so its 50/50 either way..not sure about ms and not sure bout lyme so wich one should i take? im scared to stop avenox if it is ms and scared to not stop avenox if its actually making the other disease progress faster?
ever since avenox i been progressing to alot of new symptoms and not one day of rest and peace wich also worries me
and i been bit by 3 ticks the month before i strtaed getting sick and going through all this.. my back door is the woods and my doctor dont even have the decency to help me try to rule this out...Since its uncommon in my area! i have a family of deer that sleep in my front yard! are u serious! ok that was just a vent there lol But regardless I'm fine with having MS i'm just not fine with being bit by multiple ticks and then geting sick and my doctor not caring one bit Even if it is just MS put my mind at ease and help me rule it out for me!
It is always your choice to continue or not a course of therapy. Stopping Avonex - if you have MS - would just stop the med that "might" help. It does not doom the med to not working should you restart it later. As for causing another disease process to progress faster, that has not been shown. People on Avonex are NOT immunesuppressed (even though many of the Lyme people claim that they are). We do not get more infections nor have more problems clearing infections. As long as the interferon is not causing serious lowering of the white cells (specifically the neurtrophils), there is no data that you would be allowing a worsening of an infection like Lyme. I know this is in disagreement with what others say, but I have read and thought about it and it is my educated opinion.
What is really dangerous in Lyme disease is to NOT be on the antibiotics.
I do not disagree with your planned course of action at all. However, not all LLMDs are saints. We have come across some who were charlatans at best and a few that were outright dumb. Just keep your wits about you.
Also, there is no reason why a person could not have MS AND some kind of infection. I have often wondered about doing a trial course of antibiotics for those people like you. Some would advocate a trial of antibiotics for all people diagnosed with MS. Those are often the ones that refer to Lyme/MS or that state that all MS is actually Lyme Disease. I can't say that I agree with that position at all.
I don't think there's any reason you couldn't try a course of antibiotics, if you wanted to see if it helps, while staying on the Avonex. Some studies have actually looked at the combination for MS, such as this one:
(remove the space before the "bbc", when you paste the link in your browser). The antibiotic mentioned in this article, doxycycline, is the one most commonly prescribed for lyme. Also, other studies have looked at combining Minocycline with one of the DMDs.
Without rehashing the whole Lyme vs. MS debate, I would say be cautious. This is one area of medicine that is pretty gray, and the patient sometimes needs to make decisions for him or herself (it *****, I know). For example, while I don't think ruling out lyme disease is as clear-cut as most doctors want you to believe, I also don't think it's as rampant as some report. And if you look at the symptom list on some websites, anyone could be diagnosed with Lyme. And while I certainly wouldn't discourage you from seeing an LLMD, keep in mind that's not really a special qualification (from my experience, an LLMD is a doctor who's willing to call your symptoms Lyme disease and prescribe antibiotics).
I read through your thread in the lyme forum, and an example of the kind of information you need to be wary of is "Lyme can cause MS." Since no one knows for sure the cause of MS, I don't see how statements like these can be made. Of course, some of the symptoms that you describe, like joint pain and stiffness, could be caused from Lyme disease.
This probably just muddies things more, but I just thought you should be wary.
Thank you guys for your input and correcting alot of things i read or was told wrong...I'll definatly be doing more research! And definatly will stay wary about alot fo things actaully. Thank you though for stating on the Avenox and anti biotics it was freaking me out when i heard it could make you worse! Minds at ease a little now!
Sorry if I posted misinformation. I'm not an expert on MS, and probably chose the wrong words. What I meant to say is Lyme can trigger MS or possibly cause MS-like lesions. Would this statement be more factually correct, or is this still controversial? I am not trying to start a debate here, I just want to understand.
I do agree that one needs to be wary of an MS or Lyme diagnosis. However, the fact she came down with classic Lyme symptoms after remembering several ticks on her in Pennsylvania (lots of Lyme disease in PA) does not sound like a coincidence to me. Of course, keeping an open mind, it could be a coincidence as certain diseases mimic other diseases.
And like I've already said, based on her symptoms and history, probably most LLMDs would probably start treating her in absence or before positive serology. As others have mentioned in the other forum, you should seek an LLMD that belongs to ILADS. LLMD is a term simply created by patients, and has no meaning in terms of qualifications. You are correct.
If you try antibiotics, and you never experience herxheimer reaction (I had a severe initial herxheimer), I would remain skeptical of a Lyme diagnosis. An absence of a herxheimer reaction doesn't necessarily mean that you don't have the disease either, so I guess you would then just have to use your own judgement on whether to go the Lyme or MS route. Unfortunately, from diagnosis to treatment, there is a lot of controversy surrounding both of these diseases. For this reason, you may want to pick up books on Lyme (internet isn't a great source for Lyme) and MS. For Lyme disease, "The Cure Unknown" is a great book to read (someone mentioned it in the other forum). I don't have MS, so I don't know what to suggest in terms of reading material.
Even though it is hard, try not to let your disease (whether it is MS or Lyme) or the information you receive here overwhelm you. I believe the most important part of dealing with any disease is to keep a positive outlook and having hope. I have trouble doing this myself, but I'm working on it. Sometimes I get too far ahead of myself, and sometimes I just want to give up on everything.
Sorry for the long post, and I wish everyone here good health.
Maybe I spoke too soon. I think there's ample evidence that neuroborreliosis (CNS lyme disease) can cause MS-like lesions. And, while I thought I had read almost everything on the subject, today I came across this article:
The authors provide some references that B. Burgdorferi infection can start an autoimmune process, like that seen with MS. But, it's tough to say how common this is.
Like many Lyme patients underoing long-term treatment, I have concerns about LLMD's over-diagnosing the disease, but also was personally negatively impacted by the narrow definitions of the disease and diagnosis criteria upheld by many physicians.
I'm posting the following as an assessment of the situation, phrased much better than I ever could:
From the Columbia Lyme and Tick-Borne Diseases Research Center:
"The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.
Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.
Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue."
As for Lyme and autoimmunity, that was a thematic topic during the recent IDSA hearings in July, 09. Both ILADS and IDSA have a lot of content from the hearings on their respective sites, see for example:
Many chronic Lyme patients and advocates interpret the proposed autoimmune condition of "Post-Lyme Syndrome" to be another obstacle in the way of long-term treatment, as antibiotic therapy would be unwarrented in an autoimmune condition, but therapeutic in active infection.
Finally, I don't think anyone on the Lyme forum is intentionally giving out misleading advice. Of course these are patient communities open to anyone and we also have a clear lack of black and white answers when it comes to this disease. I frequently post on the Lyme forum in an attempt to pay forward my experiences, but profess a need to hedge all of my advice given the murky waters of Lyme and TBD.
I didn't mean to imply that anyone was deliberately giving out misleading information. But, sometimes I see information get picked up and spread (especially over the internet) that is more opinion or belief (of the originator), than actual fact.
Thanks for posting the links, Wonko. It's interesting reading.
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