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Question for Mrs. D regarding Antidepressants
Hello Ms. D!
I have a question for you as one who is likely quite familiar with both the benefits and drawbacks of various modern antidepressants. Since 2005, I have suffered from an "idiopathic" small fiber neuropathy that was only finally correctly dignosed as being caused by Lyme Disease in 2012. Prior to that time, I was one of the countless millions of neuropathy patients who had fallen through the cracks with Lyme undignosed, due to the traditionally lousey Lyme antibody testing (ELISA, Western Blot) which kept missing me. My breakthrough came in 2012, when my diligence in following legitimate Lyme research on-line finally brought me to the revolutionally new "Borrelia" (Lyme)blood culture test offered by "Advanced Labs" of Philadelphia ( www.advanced-lab.com ). My blood culture, in-turn, was positive for "Borrelia", and all of the pieces finally fell into place. All that being said ... I was one of the first to use Cymbalta when it became available in 2005 for my small-fiber pain, and have always had great success (75% overall pain relief) with it for my physical small-fiber discomfort. As such, over the last eight years I have used it as needed, and then tapered-off when I did not. However, I also noticed that my mood was significantly improved at the same time, leading me to conclude that I likely also suffered from mild to moderate depression (imagine that, after suffering undignosed with Lyme for years :mad:) The only side effect of Cymbalta for me was extreme difficulity in having an orgasm and, as a relatively young guy who loves sex, that is a significant drawback to an otherwise wonderful drug! As a result, I was forced to only use it when I was going through a difficult period of small-fiber pain. So here is my question ... Having recognized that depression is present in my life, I would like to experment with a different anti-depressant that does NOT have sexual side effects. This anti-depressant does NOT need to treat pain; rather, just depression itself, as my pain issues are coming under control as I treat the Lyme. What anti-depressants are available in 2013 that are regarded as relatively safe, mild and managable, do not have sexual side-effects, and might fit the bill of a 54-year old guy who only needs them for relatively mild depression? As always, thank you for your remarkable insights, and I also welcome comments from other KNOWLEDGABLE contributors. David |
That's an interesting update.
There are the "old" MAOInhibitors that I think do not have many sexual side effects... Nardil. But they are difficult because of risk from tyramines in food interacting. So doctors don't use them anymore for that reason. What I see on the web is some men have difficulty and others not. Wellbutrin (bupropion) works on dopamine systems and usually has few if any sexual side effects. Using a low dose may be all you need. Some people get cardiac palpitations on this drug... and have to stop it, however. We've had a few PNers on here claim it also helped their PN pain. Almost all the SSRIs and SNRIs affect sexual performance and enjoyment. Some less than others. Zoloft is less so than Prozac... but they all affect it somewhat. What antibiotics are you on....? Long term some of those have nutrient depletion factors, that you need to attend to, as well. SAMe is OTC and works for mild depression and low mood. You might look into that. Its price has come down quite a bit over the years. NatureMade is one of the better brands. It has a rebate program online... you get a $7 coupon, for 500 or so pts (which is about 3 packages). Costco has good prices on SAMe...that is where I used to get mine. Start at 200mg a day for a while to see it if agrees with you. Some younger people may get irritable on it. (like my son did). The arthritis dose goes up to 600mg-800mg a day...but most people feel better on just the 200mg. (take on an empty stomach early in the day--it may cause insomnia at first but not always). edit 3-12-16--- The NatureMade rebate program has been discontinued. |
wellbutrin the poor mans viagara. it helped with my pn pain.
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... many thanks, Mrs D!
Lyme is best thought-of as an "Infectious Neuropathy" which can effect any organ or system in the body. It is often accompanied by various "co-infections", of which the most common is "Bartonella" or "Babesia". It is believed to have originated in the New York area, and has since exploded to encompass all of the United States and most of the world in just 40 years! Here are two of the better Lyme websites, including one created by a very well-informed patient: 1) http://lymedisease.org/index-idsasf-home.html 2) http://www.benbrew.com/lb/lb.html My treatment consists of both oral anti-microbial combinations such as "Tindamax" and Ceftin taken together (with Tindamax rotated three-weeks on, three weeks off due to its neurotoxity), along with a wide variety of supportative supplements just as "Japanese Knotwood", R-Lipoic Acid, and Methyl B-12. My guess is that roughly one-third to one-half of all occupants residing in North America are now infected, of which perhaps 90 - 95% do not know it. Rather, they are told by their well-meaning but uninformed doctors that they have: 1) Fibromyalgia 2) Pre-Diabetes 3) Chronic Fatigue Syndrome 4) Restless Leg Syndrome and other junk diagnosis. Unfortunately, "Lyme-Literate Physicians" are too far and few between, and very few take insurance given the extensive and time-consuming face to face workups that are required. For many years, the CDC has falsely conveyed the message that Lyme is essentially hard to catch and easy to cure. In reality, as the hundreds of Lyme specialists trying to treat this silent plague will tell you, it is just the opposite. Lyme is extremely easy to catch and very hard to cure! For a long time, the CDC likewise reluctantly reported that there were 30,000 new cases per year. They just quietly updated that figure to 300,000 new cases in the United States each year, most of which become chronic as the infected remain undignosed and the spirochetes spread bodywide (including easily across the blood-brain barrier). As with most plagues, this is a disease that infects countless millions without regard to race, income, or location! Incidently, I was infected in 2004 after being bitten by a tick along the Chattahoochee River in Atlanta! Finally, the most common form of neuropathy that Lyme seems to cause is "Small-Fiber", which accounts for the vast majority of the tingling, numbness, and burning symptoms that Lyme patients report! Warm regards, David |
... and I just ordered 48 tablets of 200-mg Naturemade SAMe from Walgreens for $30.00. That is just enough of a trial to see whether I notice a mood improvement!
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Just trying to wrap myself around the idea of 54 being relatively young. I am 51 and it feels pretty darn old... Guess it is different for men! |
O.O Tindamax...has a warning as causing Neuropathy....
http://www.drugs.com/disease-interac...,tindamax.html Flagyl (the father of Tindamax and chemically related) can also cause lesions in the brain. This is dose and time dependent. I suspect Tindamax also will be implicated. Thanks for that extra information on Lyme, as well. It will be useful here. If you could stick around some and post to those you suspect have a Lyme component... that would be great. Those stats are very alarming and concerning. If you get hyper on the SAMe.. start more slowly at 1 every other morning on an empty stomach. I found this increased "energy" did wear off after about a month. I took SAMe for about 10 yrs (at 600mg aday mostly)...for my knee and arthritis. I healed my knee over a 3 yr period, and I avoided a knee replacement. I am much older than you, so the hyper thing did not last for me. But it was unmanageable for my son. He liked SAMe quite a bit but after a month, he got too irritable on it. He tried it 3 times and struck out each time. |
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Years ago—in a "depression" phase of chronic pain—I went through a similar search. I tried (I think) a dozen or so antidepressants suggested by my PCP, beginning with tricyclics and progressing from there—and never did find one that fit the bill. Eventually, I must have slud back into an "anger" phase (is there a "disgusted" phase? :rolleyes:) because I finally gave up and dealt with depression in other ways. We're near the same age. Can I assume (from the way you write) that you've already dealt with dietary and vitamin/supplement causes/contributors? Hormone imbalances, especially at our age, can also factor in—thyroid, Low-T, & adrenal hormones. Hormone treatment of depression Just some suggestions. If I'd known then what I know now, I think I'd try this route before resorting to BigPharma. YMMV. ADDENDUM: A while back, I started taking low (10 mg) dose amitriptyline (Elavil) —a tricyclic antidepressant—as needed at bedtime to help me sleep with various chronic pain issues. I tolerate it very well—no side effects whatsoever (wink, wink, nudge, nudge, know what I mean? ;) :rolleyes: :D) About a month or so into it, DW said she noticed an improvement in my demeanor/personality (i.e. less depressed). She insists it's the antidepressant effect of the amitriptyline; I think it's just that I'm getting better/more sleep and less grumpy. Anyone's guess is as good as mine. Doc |
The problem with NSAIDs for many people, is that they cause
bleeding in the GI tract. They also promote heart damage due to their blocking of Cox-1 and Cox-2 cytokines. Cox-2 cytokines have a member called prostacyclin, which is secreted by the kidney and it is responsible for dilating blood vessels. Block this cytokine, and coronary vessels are affected --constricted---and prone to heart attacks. In studies the least likely NSAID to affect this cytokine was naproxen. But they ALL do to some extent. It is a pretty severe risk IMO for chronic use for depression. My neighbor had an almost fatal bleed from naproxen... she was in intensive care for 13 days. |
... many thanks to all for your insights!
Regarding Lyme, off the top of my head I would venture a guess that it constitutes the underlying cause of the majority of all "Idiopathic Small Fiber Neuropathy" reported on this forum. Concerned readers should do the following: 1) First do the widely-available Lyme "ELISA" test in their doctors office. If it is positive then they HAVE Lyme, as there are very few false positives. Unfortunately, if it is negative, they may still likely have Lyme and its accompanying co-infections, as the ELISA is just a coin-toss (50% accuracy). 2) If negative, they should next locate a "Lyme-Literate Physician" and have the "Western Blot Test" done by "Igenex" Labs. Here is their website: http://www.igenex.com/Website/ The Western Blot will pick up another 20% of cases that were missed by the ELISA test. However, it will still miss 30% of positive cases as it did with me. 3) The game changer in Lyme testing became available only in 2012, and is the revolutionary blood culture test (the "gold standard") that also finally gave me a definative diognosis nearly eight years late (I was infected in 2004). Here is the website again for "Advance Labs" in Philadelphia that does the test: http://www.advanced-lab.com/ Warm regards, David |
In that case, why not skip the first two and just go for the gold?
Doc |
Sfn
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Thanks for all the information you have provided. I suffer from Idopathic SFN. I had a "comprehensive" blood workup by Neurologists (5) and Rheumatologists (2). I have ALL of the symptoms of SFN except for numbness. I was diagnosed in August of 2012 by Skin Biopsy. I am otherwise fit and healthy. Still going on my tread mill. My symptoms started out-of-the -blue with burning under my feet and tingling in both calves. It has since progressed to my arms , hands, torso , and face. I mentioned bloodwork to the Doctors about autoimmune related neuropathies, and Lymes Disease. Each time they tell me all my bloodwork is normal and dismiss me as Idopathic. I take 300 mgs of Lyrica and its not helping . I get bad buzzing , pins & needles, burning all over. It has become widespread. Now I have developed bad tinnitus (ringing in my ears and head) Never had this before! Did you have any of these symptoms. Does this sound like anything familiar to you? Why did it take eight years for your diagnose? I dont remember ever getting bit by a tick at home or elsewhere. I Never had any symptoms or a bullseye rash. Did you know you were bitten by a tick. I wish I could find a cause for this horrible SFN. Should I ask my Neurologist to do futher testing. Everytime I ask they say my tests were "normal" :confused: Thanks again .. Marie in NY |
Amitriptyline & SFN
[QUOTE=Dr. Smith;1018727]In that case, why not skip the first two and just go for the gold?
Hi Doc Does the Amitriptyline your taking help with neuropathic pain? Or do you take it only for sleeping and depression? I take 300 mgs of Lyrica for SFN , it doesn't do much (as far as I know), I still have bad pain and unpleasant symptoms. My Neurologist recently added 10 mgs. of Amitriptyline. I started very slowly taking 5 mgs (split pill), so far it helps me to sleep. I'm hoping I will get some pain relief with only 10 mgs like you. I do get some "angina-like" pains in my chest and arm, but my cardiologist said it was ok for me to take it. (I have micro-vascular angina, its the tiny vessels that constrict and cause me pain, my large arteries are clear). I'm a bit concerned (alto the Doc said it was OK) about increasing it (Ami) , due to "heart -related" problems I've often read about. Do you get skipped beats on Ami? I hope this note finds you well. Thanks Marie |
Hi Marie,
I do not take amitriptyline for depression; this dose (10 mg) is allegedly too low for that anyway (I think any change in my mood is due simply to getting better/more sleep). How to Take Elavil (Amitriptyline) for Chronic Back Pain I couldn't say for sure that it's helping any neuropathic pain because 1.) I'm asleep while it's working, and 2.) my burning pain from PN is alleviated entirely by taking RLA (100 mg) daily. As I mentioned in post #8 ADDENDUM, I tolerate this dose of amitriptyline very well—with no side effects whatsoever. If you haven't discussed it with your doctors already, you might ask/suggest them about switching from Lyrica (pregabalin) & Elavil (amitriptyline) to gabapentin & nortriptyline. Study finds that the combination gabapentin plus nortriptyline reduces neuropathic pain more than either drug alone I believe (not certain) that this may be the referenced study: Nortriptyline and gabapentin, alone and in combination for neuropathic pain: a double-blind, randomised controlled crossover trial. Quote:
I looked briefly for any similar study using Lyrica and amitriptyline, but did not find any (doesn't mean there isn't one—I just didn't find any). Hope this helps, & Best Wishes, Doc |
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I did try it for the pain and built up from 10mg to 50mg over a period of five weeks (as prescribed). I do not recall any side effects, but it also didn't help the PN (which was the reason I took it) so I went back down to 0 in 5 weeks, again with no ill effects. I must say I'm a very good sleeper (for which I am very thankful, it's a life saver), but I can immediately see why sleeping better could make you feel less "grumpy". As for Lyme, it shows again that medicine can have a strong regional component. For me, it was the absolute first thing they tested (both ELISA and WB), as Lyme is very common where I live; however, move 50km to any direction, and they probably wouldn't even think about Lyme. Both tests were negative, and as I had come clean about my alcohol abuse, they didn't look any further (and they were probably right. ;) ) |
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I asked about Lyme, but it was ruled out—never been tic-food that I'm aware. :D I've never had any abuse issues. "There's a time and place for everything, and it's called, 'college'" was about it. I was never a big drinker—maybe a sixpack a week, and just quit entirely when my health issues began—just didn't make sense, and I didn't want to self-medicate. It wasn't any big deal for me. I quit coffee for a few years too, and I missed that more than beer. Coffee won, but I've been able to stick to no more than 2 cups/day. I can deal/live with that. :cool2: Doc |
Nortriptyline is the active metabolite of amitriptyline.
Therefore they are the same therapeutically. Amitriptyline came first, then when it was discovered, Nortriptyline came later. http://en.wikipedia.org/wiki/Nortriptyline We have some other drugs today, which are active metabolites of the parent drug. Allegra is the metabolite of Seldane (which was taken off the market for long QT risk ..heart arrhythmias.) Clarinex is the metabolite of Claritin (antihistamines). Elavil (amitriptyline) remains less expensive than nortriptyline and is often offered first. It has been on the market much longer than nortriptyline. So doctors remember it first. Pamelor came along just before SSRIs and therefore was not a big seller for depression. The timing was bad for it. But it was promoted as an adjunct treatment for ADHD children. It gained some bad press for long QT syndrome, and some children given too high of doses died of cardiac arrest. The treatment of ADHD never included Elavil... however. So I guess doctors just think Elavil is better, but it is not really....it is just older. Elavil was used as an antidepressant for a very long time. The chemistry of drug metabolites was not elucidated until more recent years because the technology wasn't yet in place. Today some papers claim that nortriptyline has fewer side effects, and that is why it gets prescribed for pain which is still "off label" BTW. Both Elavil and Pamelor affect QT of the heart. But in the doses used for neuropathic chronic pain, this is unlikely, unless one is taking other drugs with it to potentiate this effect or if one has genetic long QT syndrome. Very low electrolytes --low potassium and low magnesium can also be additive for long QT. One other thing, Elavil has potential to alter blood sugars, mostly by raising them. I had to stop a trial of this last year in fact. So diabetics and pre-diabetics should test themselves to see if they get this effect. It does not happen for everyone, just some. In fact for some it may lower blood sugar readings. Strange but true, and wasn't understood until recently: http://www.drugs.com/amitriptyline.html Big Pharma has been using this type of technology more often. In the case of Nexium vs Prilosec...it reached levels of fraud. This Wiki article explains: http://en.wikipedia.org/wiki/Esomeprazole |
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Hello Marie: Imagine that ... someone in New York State getting a mysterious neuropathy who is otherwise in good health. Let me guess ... could it be Lyme! :mad: OK, Marie, the first step is not to panic, but you need to follow the sequence of testing steps that I posted earlier NOW! The reason we do not go to the new culture test immediately is because it costs $595.00 for the basic test, and then another $300.00 to determine which Borielia (Lyme) strain you have. Do the Lyme ELISA in your doctor's office first. The cost is negligable and if it is positive you have Lyme. Anyone that you live with also needs to be tested. If it is negative, I think that I would skip the Western Blot and go right to the culture. There is a very specific sequence of steps that you need to follow to have your blood sample processed correctly that you can read on Advanced Lab's website, but don't worry about that now. However, I just remembered that Advanced Labs is being blocked from offering the culture in New York State due to political pressure. That is the one and ONLY state (with of course the most infected and undiagnosed victims) where the test is currently being blocked. This is not a problem, however, as you can have your blood drawn by a doctor in any neighboring state. The reason for this embargo is that the majority of residents of New York State are now infected, and for ten million people to suddenly find that out all at once via an indisputable blood culture they have Lyme would lead to chaos. Also, only about 30% of folks who are bitten by a tick and get Lyme ever see a rash! That said ... I experenced my onset of small-fiber neuropathy exactly as you described. Early in the disease it can impact the Cranial, Trigeminial, and Auditory nerves, which is likely what you are experencing with your tinnitus but which will resolve with treatment. In the meantime I suggest the following (subject to approval by your doctor) ... 1) Take 10,000 mcg of oral Methyl B-12 every day on both an empty stomach, and at least 30-minutes before eating for proper absorbation. 2) Take 100 mg morning and night (200 mg total) of "Doctors Best" brand R-Lipoic Acid with food (to avoid stomach upset). This will help you in many different ways. 3) Take two tablets each day of "Mag-Tab" SR , which is a specially-formulated type of magnesium that is absorbed. Lyme will deplete your body's supply of magnesium, as it utilizes magnesium to survive. The buzzing you describe are actually muscle and nerve faculations and a classical Lyme symptom (and no, you don't have ALS!!). Two "MAG-TAB SR" daily will bring your buzzing to an end after a few weeks, as the MAG-TAG replenishes your magnesium supply. 4) Take lots of purified fish oil daily 5) Take a good multiple vitamin daily OK, for pain I would recommend a combination of Cymbalta and Lyrica as follows (and again subject to your doctor's approval): 1) Begin taking Cymbalta at a dose of 30mg once per day at bedtime for seven days to taper up, and then raise that dose to 60mg once daily at bedtime on the eighth day if you had no problems during the taper-up period. 2) I am not sure how you were taking your 300mg of Lyrica, but I would suggest that on the same day you begin the 30mg of Cymbalta you do the following: Take 75mg of Lyrica at bedtime at the same time you take the Cymbalta 30mg, and then take 50mg of Lyrica with lunch (total 125mg Lyrica per day to start). There is a powerful synergistic effect when combined with Cymbalta which works! Then, on the 8th night when you increase your Cymbalta dose to 60mg, evaluate how you feel. If there has been no change, increase your mid-day Lyrica dose the next day to 75mg from 50mg, for a total of 150mg per day. Now maintain the status quo for two more weeks, at which point the Cymbalta will really start to do its thing in conjunction with the Lyrica. If your pain is greatly decreased, then we will want to slowly start reducing your mid-day Lyrica dosing back down to 50mg from 75mg to avoid drowsiness, while maintaining Cymbalta 60 mg per day for the foreseeable future. In the meantime you need to get tested. I would bet that you have Lyme and probably Bartonella as well. Feel better and keep us posted! David |
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... I was surprised that your doctor's looked at Lyme first, until I noticed that you were in Europe, where it is not being covered-up as it is here! |
Also I'd like to add for Marie....
Improving magnesium status may improve your heart symptoms. Magnesium opens blood vessels for better circulation. The dosing for Elavil and nortriptyline is low and in low dose is less likely to cause a QT event. However, low magnesium is one trigger even for people who do not have long QT syndrome. I would hope your doctor evaluates your electrocardiograms for this problem before giving Elavil or any other drug with long QT potential. (some SSRIs are problematic... like Celexa). Here is a link to a recent article about antidepressants and QT risk: http://www.healio.com/cardiology/arr...ng-qt-interval |
[QUOTE=mrsD;1019479]Also I'd like to add for Marie....
Improving magnesium status may improve your heart symptoms. Magnesium opens blood vessels for better circulation. The dosing for Elavil and nortriptyline is low and in low dose is less likely to cause a QT event. However, low magnesium is one trigger even for people who do not have long QT syndrome. I would hope your doctor evaluates your electrocardiograms for this problem before giving Elavil or any other drug with long QT potential. (some SSRIs are problematic... like Celexa). Here is a link to a recent article about antidepressants and QT risk: [url]http://www.healio.com/cardiology/arrhythmia-disorders/news/print/cardiology-today/%7B53e7e7e4-f189-441f-a8d3-d904c67b7349%7D/certain-antidepressants-may-prolong-qt-interval[/url Hi MrsD Thank you for your response. I Take Doctors Best Chelated Mag 100mgs 1xday. I have been taking Mag for over 6 mos now. My lab result last month for Mag was 2.7. This came back as "High" on Quest lab report. The range is 1.5-2.5 mg. I am still taking it anyway, my Neurologist says he thinks its OK to keep taking it. Do you think I should switch to "Mag-Tab" like David suggested? Would that be better for me or do you think I should just stopping taking Mag because my Bloodwork is "normal"? Wouldnt my "Magnesium stauts" as you stated be considered good enough or should I continue as a maintenance? I do have "microvascular angina" , im not usually symptomotic. Unless I really overdo the tread mill or get stressed Im Ok. I was cleared by my Cardiologist to take Elavil and Nortriptylline. He said my EKG(s) never showed a long QT and that it was unlikely this could happen to me. Do you think I could have a QT event anyway. How would I know if Im having "an event" while taking this Medication. :confused: Im still a little nervous about taking it. Im hoping If I take it in combo with Lyrica I will get some relief at this low dose (10mgs). Why do Doctors give us medicine that could mess with our hearts anyway? :( Thanks again for all your help. |
QT is different from angina. QT involves the nerve conduction and not constricting blood vessels.
You could try the Morton's Epsom lotion. Sometimes oral doesn't get absorbed as much as we think or would like. You wouldn't need much -- I'd put a quarter dollop divided on both arms, along the inner wrist and inner arm up to the elbow. You wouldn't need much. If you see it works well, then you could skip the oral and just use a bit more lotion instead. Applying to thin skin over visible veins would be best for systemic absorption. I do use it on large muscles when they are strained and hurt. And I do my ankles and instep sometimes now. (my swollen foot used to really respond to it, but since it is not swelling lately I only do my arms.). WalMart and Amazon have this for a very low reasonable price. I get ours in the WalMart near us off the shelf. (online is not necessary). You can check availability of Morton's online at WalMart's website. They will give you "in stock" or not right there for the store in your zip code closest to you. It is found in the first aid section. Since you are not testing low for mag, and you don't have long QT on your EKGs.... the Elavil should be okay. It really only is risky in high doses like the old days when it was used as an antidepressant. Its cardio effects showed up in suicide overdoses, initially in fact. This is one reason the SSRIs became so profitable so quickly...I went to a CE on it from Lilly when Prozac came out and the guest psychiatrist mentioned this safety issue as the most important reason to switch patients off the tricyclics which were very popular then. Elavil was not so popular by then, and it was Tofranil which had slightly fewer drowsiness effects. |
[QUOTE=Apollo;1019400]Hello Marie:
Imagine that ... someone in New York State getting a mysterious neuropathy who is otherwise in good health. Let me guess ... could it be Lyme! :mad: OK, Marie, the first step is not to panic, but you need to follow the sequence of testing steps that I posted earlier NOW! The reason we do not go to the new culture test immediately is because it costs $595.00 for the basic test, and then another $300.00 to determine which Borielia (Lyme) strain you have. Do the Lyme ELISA in your doctor's office first. The cost is negligable and if it is positive you have Lyme. Anyone that you live with also needs to be tested. If it is negative, I think that I would skip the Western Blot and go right to the culture. There is a very specific sequence of steps that you need to follow to have your blood sample processed correctly that you can read on Advanced Lab's website, but don't worry about that now. However, I just remembered that Advanced Labs is being blocked from offering the culture in New York State due to political pressure. That is the one and ONLY state (with of course the most infected and undiagnosed victims) where the test is currently being blocked. This is not a problem, however, as you can have your blood drawn by a doctor in any neighboring state. The reason for this embargo is that the majority of residents of New York State are now infected, and for ten million people to suddenly find that out all at once via an indisputable blood culture they have Lyme would lead to chaos. Also, only about 30% of folks who are bitten by a tick and get Lyme ever see a rash! That said ... I experenced my onset of small-fiber neuropathy exactly as you described. Early in the disease it can impact the Cranial, Trigeminial, and Auditory nerves, which is likely what you are experencing with your tinnitus but which will resolve with treatment. In the meantime I suggest the following (subject to approval by your doctor) ... 1) Take 10,000 mcg of oral Methyl B-12 every day on both an empty stomach, and at least 30-minutes before eating for proper absorbation. 2) Take 100 mg morning and night (200 mg total) of "Doctors Best" brand R-Lipoic Acid with food (to avoid stomach upset). This will help you in many different ways. 3) Take two tablets each day of "Mag-Tab" SR , which is a specially-formulated type of magnesium that is absorbed. Lyme will deplete your body's supply of magnesium, as it utilizes magnesium to survive. The buzzing you describe are actually muscle and nerve faculations and a classical Lyme symptom (and no, you don't have ALS!!). Two "MAG-TAB SR" daily will bring your buzzing to an end after a few weeks, as the MAG-TAG replenishes your magnesium supply. 4) Take lots of purified fish oil daily 5) Take a good multiple vitamin daily OK, for pain I would recommend a combination of Cymbalta and Lyrica as follows (and again subject to your doctor's approval): 1) Begin taking Cymbalta at a dose of 30mg once per day at bedtime for seven days to taper up, and then raise that dose to 60mg once daily at bedtime on the eighth day if you had no problems during the taper-up period. 2) I am not sure how you were taking your 300mg of Lyrica, but I would suggest that on the same day you begin the 30mg of Cymbalta you do the following: Take 75mg of Lyrica at bedtime at the same time you take the Cymbalta 30mg, and then take 50mg of Lyrica with lunch (total 125mg Lyrica per day to start). There is a powerful synergistic effect when combined with Cymbalta which works! Then, on the 8th night when you increase your Cymbalta dose to 60mg, evaluate how you feel. If there has been no change, increase your mid-day Lyrica dose the next day to 75mg from 50mg, for a total of 150mg per day. Now maintain the status quo for two more weeks, at which point the Cymbalta will really start to do its thing in conjunction with the Lyrica. If your pain is greatly decreased, then we will want to slowly start reducing your mid-day Lyrica dosing back down to 50mg from 75mg to avoid drowsiness, while maintaining Cymbalta 60 mg per day for the foreseeable future. In the meantime you need to get tested. I would bet that you have Lyme and probably Bartonella as well. Feel better and keep us posted! David Hi David Thank you for taking the time for your response. I Live in Long Island not upstate NY or NYC. Just wanted to clear that up. I was tested for ELISA and Western Blot again last week at the Rheumo Doc. Both tests came back normal. My Rheum insisted I didnt have Lymes and that these two test were accurate. I tryed to tell her what you said in your earlier post , but she wouldnt listen. So again, I am left with "Idiopathic" diag. :mad: It sounds like I may have to take a ride to another state to get tested with this "culture" for Lymes or Bartenella. You said your sfn started exactly like mine. Mine started in my feet and calves. It spread to my arms, legs, face and torso over the course of 2 years. My worst sypmtoms are buzzing, tingling and stinging- burning. I get all over attacks (flare up) of stabs, jabs and fire ant- bites at any given time. I Never know when I will get worse and how long it will last. :( However , No numbness or weakness. Ive been taking Methyl B-12, 10,000mcg (1mg) everyday for about a year now (got that from MrsD). I thought it was working for the first few months, but now the burning is back even tho I still take it once a day on an empty stomach. My lab B12 level is well over 1,600. So I take it for maintenance. I take 100 mgs of R Lipoic Acid once a day, 200mgs would make me too jittery. Unfortunately. I have not seen any improvement in my sypmtoms with RLA either. I also tryed CoQ10, No help. I still take Bentofithame (sp) B1, 160 1 xday (My Lab B1 is normal-high) and Folate 800mcg. I do not know if any of these supplements are helping. I tryed Cymbalta last summer (2012) and I could not tolerate the side effects on only 10 mgs. I could never get to those mgs you mentioned. I wish I could follow your schedule for Cymbalta to see if it would help. but I could not tolerate it. I am "stuck" on 300mgs of Lyrica. My problem is its not helping. So Im afraid to continue and increasing it and Im afraid to go off it. :(. I started taking Elavil, Im on a low dose (5mg) , hoping to get to 10 mgs to see if it will help in combo with Lyrica. I take Krill Oil, eat salmon and lots of walnuts and Olive Oil. I do not take a Multi Vitamin because my Neurologist dosent want me to take any Vit that has B6, my B6 is 17 and he says thats good. So here I am in NEW YORK, Ive been to the North Shore (Stony Brook Neurology) South Shore and NYC (2 Neuromuscular-Mt Sinai & Cornell Weil), None of these "Specialilist" know why an otherwise healthy person like me is suffering with Neuropathic pain. Again thank you for your response. Any further suggestions or comments would be greatly appreciated. Depressed and suffering in NY, Marie |
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Thank you David for your post. Susanne is right, your information may potentially help those diagnosed "idiopathic" like me. Is the culture only done by Advanced Labs? I understand the culture is pricey---is it not covered by the insurance? I hope you continue to get better. Mary |
[QUOTE=Marie33;1019577]
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Marie: I am sorry that my suggestions are more helpful to you. Lyme is endemic everywhere in New York, including Long Island. I would strongly suggest that you make an appointment to see Dr. Richard Horowitz in Hyde Park, New York. Click this link to learn more about him: http://www.ilads.org/media/videos/videos_horowitz.php Feel better! David |
Anybody know why you wouldn't just do the third test if it's supposed to be the best?
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