posted
MB, Just a quick question - were you taking B vitamin supplements when you got the rash from taking Bactrim?
You can get an awful rash (really a flush) from Niacin; it is very hot, so that your skin feels like it is burning and is sensitive to the touch. It can spread all over your body, and you can feel cold, but can't stand to have anything touch your skin.
It can last 20 minutes to all day. I took a double dose by mistake and it was not fun. Now I am sensitive to even the smallest dose, 25 mg, in a B complex vitamin, still getting a mild but unpleasant flush.
When it happened to me I had no clue, and finally found it after search the net for hours for "rash" instead of "flush." My dr. said good, you're herxing........
Posts: 97 | From Great Lakes state | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Twinkle, actually, now that I looked at my records, yeah I was taking a good amount of B-Vitamins. These are the records of the last time I took Bactrim. It documents the beginning through a few days after finishing the drug. Clearly progress was made. This is a concern as Bactrim would be very useful if I could use it.
Records Below:
[07-14-08] - Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. I woke up exhausted, felt like I needed at least 2 hours more of sleep. I felt better later in the day, from around noon onward. I went to my appt with Constance, and symptoms were around 40% functional. Muscle and joint pain are present, insomnia is serious still, though psychiatric symptoms seem to have decreased, including sound and light sensitivity.
[07-15-08] - Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling exhausted. Went back to sleep from 8 to 11 a.m. and felt better. I took an extra ativan to accomplish this. I felt around 40-45% during the day, about 40, and did some cleaning downstairs. My strength gradually decreased around supper time, and I became irritable and tired. My muscles in my joints and back are sore.
[07-16-08] - Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling better than the day prior, but was still pretty tired. Irrability was mild though present. Insomnia was present. I had a difficult time concentrating and maintaining composure, but succeeded in the end. I dealt with an extremely stressful even having to tell Mark that I knew about what he'd done to Erica, and about the consequence and feelings involved. It was so stressful that it was surreal. I felt like time stood still. I made it through and now my muscles hurt, my neck is tight, and I'm starting to get the evening "fatigue/symptoms" that occur. Today I was around 45% functional.
[07-17-08] - Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up really tired, slept until about 7 a.m. Fatigued in the morning, feeling exhausted. Mood was stable and uplifting, genuinely content. I worked out for 1 hr, which went well. I consumed a lot of fluids. My back, joints, and left foot are hurting a lot -- aches and pain. However this was after washing the car all day, cleaning my bike, and cleaning my porch. Hair was falling out less. Into the evening I became severely irritable. I still haven't had a Herxheimer reaction from the Bactrim.
[07-18-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up extremely exhausted. I could barely function. It took me an hour and a half to be able to wash some dishes. I think the exhaustion from working yesterday is the culprit. Moderate work today, would be best. Hair is falling out quite a bit. Decided to do some work, ended up working for 3 hours, and exercised for 45 mins. Too much, ended up feeling exhausted, though still functional. Into the evening, I stayed up past 9, and irritability, low frustration tolerance, sweaty hands, back, groin, and ongoing hair loss followed. Blurry vision out of left eye. Back pain and leg pain present. I took 2 625mg Aspirin earlier for the pain. They helped mildly. Hand tremors present. Aching joints in the hands. Light sensitivity increased.
[07-19-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. The 6th day of Bactrim. Tonight or tomorrow I should experience a sharp increase in symptoms. Disability will likely drop me to 25-30% function. I woke up exhausted again, felt like going back to sleep. Stayed awake so I wouldn't get worse. Felt run down, but took the dog outside. I managed to work out for 45 mins on the bike. Symptoms of hairloss continue, aching in the spine, and joints, especially feet and knees is present, including arthritis while riding the bike. Starting to feel spacey and irritable around 4:30 p.m. -- I did go to the movies, but felt tired. Function was at 35%. Extreme sickness followed into the evening around 8 p.m. Stiff joints, fingers and nerves inflammed. Bowel inflammation, mild nausea, runny nose, cough, and a moderate headache of about 5 on the 1-10 as well as "air hunger" -- a symptom in which the patient breaths, but is unable to adequately inhale the necessary breath completely. I am certain this is a Herxheimer reaction beginning.
[07-20-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Couldn't sleep last night, though dead tired. Stayed up until 2 a.m., and insomnia continued through the night while waking up countless times. Went back to sleep around 7 a.m. and slept until 10:30 a.m. Quality of sleep was 10%. Waking, cloudly thinking, with stiff joints, of the fingers, spine, hips, knees, feet. Shoulder muscles, back, spine are stiff. Mild nausea. Tremors are mild, if even present. bowel is bloated, upset, especially lower. light sensitivity is 5 on the 1-10. Cough, fluish symptoms, are mildly present. Extremely fatigue. Concentration limited. Memory difficulties.
[07-21-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Couldn't sleep last night, though dead tired again. Doubled Ativan in order to function for an appt today. Sick in the morning, but better than last night. Functioning around 35%. Stress during the day was enormous. I flared up around 4 and started have irritability. I had muscle pain, and malaise all morning, but it graduqally increased to a disabling level. Took 3 aspirin 625 mg each yesterday to sleep, but 2 tonight. Headache around 5.5. Rib pain, chills, fever, bloating, stiff joints, light and sound sensitivity. Neck pain serious, walking and gait have become distorted, a limp while walking is present. Skin pain, and hair sensitivity is present. Overall function has dropped to 25% functional.
[07-22-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up exhausted. Sleep quality was absolutely horrible. I had chills, and night sweats. I had to change my clothing a number of times, and switch pillows. Joint pain, and muscle pain are present. My skin feels like I have a sun burn all over -- everything hurts to touch or be touched. Light sensitivity, sound, all difficult. I woke with a mild headache, and I've been sweating. I took 1 aspirin this morning 625 mg. Function today is around 30%. Is it possible Bactrim is antimalarial as some say, and that I have Babesia? This is unknown. It could be a problem defining a co-infection.
[07-23-08] Bactrim (Sulfameth Trimethoprim 800/160 1 x 2,) Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling really tired. My skin feels like I have a sun burn, and I'm sweating. I had night sweats all night. I also had chills. I have a minor headache. Sleep was absolutely horrible. I woke up countless times miserable. At 2 in the afternoon I was able to both work out on the bike for 30 mins, and then take laundry downstairs. I felt "malaise" but not debilitated. I was able to go downstairs and do and hour and a half of work, including repairing a shelf, washing a refrigerated, and cleaning some dishes. My back aches, but isn't serious. 3 on the 1-10. Fatigue is 5 on the 1-10. Irritability is increasing. As the evening went forward, I had increasing redness of the skin and a burning sensation. While other symptoms decreased, this one began increasing. A sign of a potenti side effect or allergy was developing. Dicontinuation of treatment is necessary. Monitoring will continue.
[07-24-08] Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling a little better. I took an extra 1 mg of Ativan at 4 a.m. to help me get through. It's now 6 a.m. and I can function at about 40%. My back still burns, but it's not as serious. I changed my clothing a few times last night, due to excessive sweating. Symptoms have decreased. I feel cold, an my back aches, but it's far less than the last few days. Pain in extremties mild, and improving. Complains have decreased with just about every symptom. Fatigue, soreness, aches, and general malaise is ongoing. Function of around 40-45%. Cognitive function impaired this morning. I felt as though I were in a fog at 10 a.m. and though I were going to fall asleep driving. I felt hot out in the sun. Some skin rash has appeared. Could be Bartonella. May be Bactrim. Unknown.
07-25-08] Lamictal 150mg x 2, my Ativan 2mg x 1, and Pentasa 1g x 2, as well as Wellbutrin 200mg x 1, 2 tablets of ALIVE by Nature's Way. Woke up feeling tired, but it soon went away. Many symptoms improved, allowing me to function at 45%. The skin sensitivity and redness began disappearing. I worked out on the bike for 1 hour and then worked downstairs cleaning for 3 1/2 hours. I was tired, and fatigued. My joints were popping and I felt aches and pains as the day wore on. Into the evening I began to feel irritable, but overall progress was made.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I haven't seen the IDSA speak out about Rife Machines, and Bionic 800,and the salt/c or marshal protocol. They just said long term antibiotics is not effective.
You say almost nothing has helped-well you have plenty more options. Read Dr. S's The Lyme Disease Solution and go on the inflammation diet.
Posts: 365 | From Sylvania | Registered: Aug 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
So I finally saw the PA (Who I like, and who knows my case best) yesterday [11-19-09]. I'll give you a full run down of everything we talked about, but then ultimately tell you the final drugs we settled on. They will be listed in "Bold.".
I told the PA that the only positive results I've seen since last seeing her was while using Malarone. I explained that the Malarone at twice per day 250/100 was solid.
I presented my documentation, which she was thrilled with. I expressed that the others (especially the head LLMD) looked at me funny when handing these updates to him. The PA said "Uh, well I love it, everything is here, the appt goes faster, and we're both clear where you've been and what the next steps are."
The PA then told me about a patient (Random tangent), who went to Colorado -- (She was sick sick sick like you and not making progress). She went to CO, spent 3K, and had all kinds of herbs, colonics, body work, fasting, cleansing, and it lasted 8 days. She came back, and she said she felt great, that all her symptoms were gone." -- I don't know...but I'm just mentioning it.
I told her I'd heard of people mentioning it, and expressed a run down of things I'd tried that may be related.
I told her that while she was gone I had to see other people in the office -- which I'd said I absolutely wanted to avoid as much as possible, and that she was the only one I wanted to work with from the start." I told her things didn't go well, that personality conflicts abound and that generally my opinions were dismissed or avoided. Of course being the way I am, I'll force them down your throat if I'm paying you hundreds of dollars per hour to work "for me" to help me. The reality is, the patient is the one who gives the doctor the diagnosis, the patient is the center piece of observation both physically, and cognitively/emotionally." She felt bad and said, I understand -- well, what you do works extremely well for me, so I don't understand, but whatever."
I agreed and we moved onto further discussion. I showed her what meds I was presently on. VSL#3, Theralac, Saccromycin, Malarone, Buproprion, Magnesium, Ativan, Pentasa, Lamictal, Levaquin.
She asked me if I'd done Levaquin previously through their practice, and I said no -- we did Factive, and it was worthless for me.
I then presented a list of everything we'd tried in a color coded sheet. The medications I had great responses to were Malarone, 5 months, no Relapse.
She then asked further questions about the Levaquin. I told her I'd used it previously, during a period which I was given it via IV and orally for a few weeks for a septic reaction to an IV line. I was given IV Vancomycin, Oral Pen VK, -- then stopped both as a result of an allergic reaction. I developed sepsis following the discontinuation of these drugs and was hospitalized. A month later after having left the hospital and having done both the Levaquin and Bactrim at home orally, I suddenly improved dramatically. Since that time, I've been trying to use one drug at a time to see which was responsible for the progress. I'd done Bicillin, nothing. Vanco I'm allergic to and thus can't redo, Bactrim was revisited, but a strange response developed, which seemed like a sun-burn or a potential reaction to the drug. I discontinued it, but I did see improvement.
The Levaquin was the final drug to revisit. I've been using it for a month and any changes I've seen have been subtle and could be easily explained by other modes. In other words, I told her I wasn't certain of the drugs impact so far.
She then covered the Rifampin and said "What happened with this?" I told her about my liver enzyme count, that I'd only used 1 dose, had crippling insomnia, anxiety and the liver issue. However, I've also heard of patients having strong reactions initially, especially if the drug was combined with many other medications at once -- which is what happened, and so, it could have been a reaction unrelated directly to Rifampin alone.
She agreed, and felt that we could carefully monitor the liver within one week. This way we could easily avoid conflicts and see whether this potential candidate could rise again.
So she said "Rifampin and Levaquin would work well together, if you can tolerate it, so I could add it to what you're already doing -- which is another 2 months of Levaquin."
She then began reading my diary of what happened during the week I used Bactrim. We came to conclusion that this drug also may be revisited, simply because the symptoms could have easily been related to sun-burn, since that type of reaction is not seen generally with Bactrim, unless you've been exposed to the sun. At any rate, she said she was open to another test trial which would also be carefully monitored when we chose to revisit.
We then changed subjects and moved onto the discussion of Babesia again (We'd just been talking about Bartonella when discussing Rifampin, Levaquin and Bactrim)
She then mentioned the drug Remet, and said it's another option. She said we don't prefer to go up on the Malarone to three per day since we don't see results -- we used to do it in the past. She said "Here is an option, if we used the Remet, you would have to stop the Malarone and Levaquin." I told her that probably wasn't the best direction to take given we already have a foundation of progress (without relapse) on Malarone. -- and the Levaquin should be given a little more time. Although no major results are seen, a combination may alter the progress of the Levaquin.
She then proposed another option: I could always add Rifampin to Levaquin, or I could add Bactrim to Levaquin.
We then considered the issue of the Liver, regardless. She said we could use Milk Thistle, ALA, NAC, Hepa 2 (Dr. Zhang.
She stated that using one drug alone -- such as what I'm doing, would probably not be in my best interest given I've done so much -- so many mono therapies. Dual combinations and more are probably the best course at this point, but we've got to make sure to prevent damage. And thus the Rifampin and Levaquin with Liver support would be most useful.
So we'd keep the Malarone, Rifampin and Levaquin, and then add from there -- potentially Bactrim, depending on what takes place. I asked if Bactrim with Levaquin was ok, and she said -- hesitantly -- yes, but I usually see better progress with the combination of Rifampin and Levaquin.
She said the usual course with the Bactrim would be using a Macrolide, like Zithromax or Biaxen. I told her I could not get my hands on Zithromax through the insurance. She then considered Biaxen again, and I said I'd check into it.
She said "I could" do the Bactrim, Levaquin or others -- just because it's our standard doesn't mean I can't -- it's just... we'd need to tread carefully. I want to help you function better, not be slammed so hard by adding the Septra too (Bactrim).
I told her I was strong enough to take a harsh hit compared to most patients -- my body is much stronger but the symptoms are still pronounced like the fatigue, no so much pain or enormous amounts of inflammation.
She pushed the Rifampin and said "Well, if I were you I'd do the Rifampin because you really didn't even ever use it -- one day just doesn't count." I agreed.
My mother then said "Make sure you tell her about the weight loss." I then told her I'd lost 13 pounds since last seeing them in September. She thought it was significant, but I said I'd been losing weight before that too I believe. She said that Levaquin can cause weight loss, but that as long as I'm eating reasonably, I'd be ok. I told her I was eating fine, it was just that I didn't have the overwhelming compulsion to eat more than necessary like I was before.
She then mentioned thyroid. My last test showed slightly low T3, but I told her I'd started the Armour Thyroid 1 1/2 months ago, and that not once have I seen progress while using it. I'd used it for many months prior -- like 5-6, and nothing. I then read down the list of things I used to "support" the body -- and told her, I really don't think we're looking at a toxic body issue, or even a major hormonal issue in the Thyroid as much as this persistent low load infection(s) that just won't take a seat. She said "Yeah, maybe, I mean we've hammered you." I said yeah, I did this, this, this, this, this -- it's just not sensible to pump all this money into these other areas when I'd done them for more than enough time. She said maybe.
I've done so much detox, 3 months of the Cowden, Alive, Vitamin D, Thyroid, NSI ALA/NAC, Dimension 3, B12 Shots, ---.........
I said there was only one thing that made a change in my numbers probably, but which didn't improve how I felt. The Seriphos made an enormous change in my cortisol levels. MY numbers in the morning were actually low, while my 10 a.m. and 2 p.m. numbers were slightly too high. She said we'd balance these slight deviations out by using the seriphos 1 cap at 10 and 1 at 2.
I also did, Valtrex 4 months, nothing. I also did VFEND (trying to see if it had a better response to Diflucan -- like the study that was done). Results, nothing. Nystatin, nothing (thought it's mostly there to just protect), Diflucan, nothing, Plaquenil, nothing, Mino nothing, Biaxen, Nothing, Amantadine, nothing, Azithromycin, nothing. All of these were done for extremely long periods of time, except Diflucan.
We then covered Tindamax. It was clear that we want to add this at some point. She then said "We can do an odd regimen, maybe next month. Levaquin and Rifampin for the Bartonella now, then next month Zithro, Tinda, Septra. I told her I couldn't use the Zithro since Insurance won't cover it, so she asked if Biaxen would be covered? I said "Maybe." She continued: Just 4 days a week. Either do Septra/Biaxen, 4 days on, 3 days off, and Tindamax 3 days on 4 days off, or 2 weeks Tindamax on, 2 weeks off, but it's kinda harsh, it's really rough. She said it's tough on the liver and in terms of Herxheimer reactions probably for someone like me -- she feels (and I agree) that cystic infection is prevalent in my case, only because the logic is so obvious. I've done antibiotics straight for nearly 8 years, and if illness is still present -- which it is since the Lyme Disease Western Blot through Igenex was positive across the board.
She then said -- I think it's best to do the Septra, Tinda, Biaxen. If the current regimen for this month (Lev/Rif/Mal/Lariam), then we'd stay with that, otherwise we'd go onward to the next regimen.
I then asked her about "How" Tindamax has an effect on the cystic form of Lyme Disease. The chemistry of Tindamax, and it's relationship to Lyme Disease, clearly shows it does not work for Lyme Disease as it's spiral form. She said, we don't know entirely, we only know the studies that have shown that family of drugs breaks up the cyst. We think it's possible that the drug has antiparasitic properties, which could be responsible.
She then switched topics and said: I think that in your case, you know you've got this chronic state, where you're not dying, but you're not living -- and it's likely the Bartonella advances slightly, then the Lyme - and it's probably a low load. This has been going on for such a long time that you know the antibiotics aren't the answer to your complete wellness, but right now we want to just move you up a notch, so you can then move further trying other methods.
She then asked me about LDN. I explained that I had a lot of side effects. I told her it seems that when I have side effects it's often when the drug is taken near bedtime, which is the time of day my symptoms are most active. She said "LDN really could be of value, it would really calm your cytokine activity. She asked me what I'd tried before, and I said 2mg. She said "I would consider starting again but using only 1mg." She then said "And the Pekana Drainage, what happened with that? I told her I did it for 30 days but then the main LLMD told me to stop. She said, that's strange, because that's really more of a long term thing. We'd use it to decrease the flares, usually.
I then told her that I'd never seen results on any supportive therapies except Transfer Factor Plus by 4 life (Which worked for one week while taking 9 caps per day), but then it stopped working after that. She then told me "Oh, that's the kind we have." She said "You could try searching around for a different company, it may be useful, but I don't know." I've done a very large amount of immune stimulation, so further work in that area seems worthless -- if my immune system isn't strong now, then it's not for lack of trying but because we have to focus on these infections.
She then asked me about Hyperbaric. She really would like me to do it, but cost and location make it prohibitive. The fact that 60 sessions would be needed, plus going 2-4 days per week (o even everyday if possible) just isn't going to happen. I told her I was disappointed. I would look in my area locally to see what options were available, but if it's not covered by insurance there is no way my meager SSI check can pay for it. She then said "Yeah, even if travel was resolved (such as having you stay with someone), those other factors are limiting.
We then discussed sleep. I told her I felt the Levaquin was interfering somewhat with sleep. I told her the Ativan just isn't strong enough to push through it. She recommended trying something new. She asked me a long list of drugs and I told her I'd already tried all of them, but the one I had not was Seraquel. She said "Divide it into two or even 4 doses of a 25 mg pill. See what feels right, but don't expect to function for at least 8 hrs. You'll be out like a light. I told her I just don't want to wake up feeling sicker or even more sluggish. She understood.
I told her the bowel issues had resolved from the VSL and Theralac/Sac. I asked if I could lower anything. She said, I would still continue at least three, Theralac, VSL, Sac, or remove the VSL and use Ultra Flora, but stay with more during this process. I said I may as well stick with the capsules then, because I can use one VSL cap and it's 112 Billion. She then said "Jeez, yeah that's way more than the Ultra Flora or others, yeah, stick with that if you can -- I love the product and use 1/2 packet for myself. She then asked if Insurance covers it (Hers does cover the double strength). Sadly mine won't cover it.
I told her I also saw some results from 60 days of Zhang Artemesiae, but it wasn't significant and relapse did take place.
She then said "Well, hold on a minute I just want to check with the big guy about doing the 3 Malarone. I don't want to lose this idea. She then came back and explained that if I'm having such a good response, we will increase the Malarone to 3 per day.
Then we turned to my actual written update.
She then said "Ok, so you wrote here that you were burned out, and the doc wrote in your notes that they were thinking about using the IV. I also see your concern about turning to the IV and relapsing -- because it's true, it's very likely that will happen to you." I agreed and said, it's just not sensible yet to go that route -- having to install the port, manage everything, etc. It should be a last resort I think. She agreed and said we'll wait.
She then noted that I wrote "Tigacycline". She said, oh yes this would be good, but we can't prescribe it yet. Only Infectious Disease doctors are being permitted at this time. I then pointed out the IV Tetracycline. She said yeah, but we've "never never" use that, and even still if we did it, it's just no different than anything else we'd do via IV here -- Doxycycline etc. It'll just end in Relapse probably, you know? I said "Yeah, I think so too, but it's that temporary progress I'd considered."
She then looked at the IV Flaygl idea and said "Hmmmm, Hmmmm." She wasn't really convinced it appeared that it would be write for me. I told her I'd just thrown it in -- that I didn't know anything about it.
She said "You'd done all the supportive stuff, you've done so many drugs -- we're missing something, I just can't quite tell. I mean, I really don't think your load of infection is high, it's like, I know the antibiotics aren't probably the answer -- but I do think we can get you higher up the ladder, but...what else is it?
I said, perhaps we are just facing excessive resistance, or maybe another infection or circumstance is present. I highly doubt it's autoimmune but I do think the immune response is being triggered by something -- could it simply be a low load of what we already know, or something undiagnosed?
She then continued "You know, maybe something in Eastern Medicine holds the key, but it's just....something we don't know here. Wouldn't it be great if some plant in the rain forest holds the key to something like this? You would just rub it all over, bath in it and bang, be cured Wouldn't that be amazing?" I then said "Well, a lot of the medications we've advanced started there, and still evolve from there -- it's possible, but it's certainly not a full understanding of what's happening here. It was an amusing break in the conversation, because really we know we're dealing with excessive complexity here in my case. Yet, what if it's something very simple we're overlooking?
She was reading the report so much faster than I could read. I stopped her, and said I thought the Mepron could have been used for two short of a duration -- though it didn't seem likely given the fast response to Malarone. But why? Why Malarone? She then said "Progunanil" -- perhaps the strain of babesia you have just isn't responding at all to Mepron or these other antimalarials but that particular drug is.
I then asked her about using Malarone and Mepron (just for kicks). She said "The only time we've ever gone extremely high on either -- or added both together was for extremely heavy people."
She then covered the ideas I listed for Babesia, including Quinine, Clindamycin, Lariam, Chlorquine, etc. She then asked me if I'd ever done Lariam, but I told her I'd dismissed it in the past because of the side effects. I would consider it though. She said "I'm going to write a prescription for that, adding it to Rifampin, Levaquin, Malarone. I'd give you at least 6 weeks to get on them, then add the Lariam. Check the liver each week while adding each week.
I pointed out the other Babesia drugs aside from Lariam. I mentioned other physicians had success with that Clinda/Quinine. She said Clinda/Biaxen, with Mepron. The Ivermectin you mentioned here is just the IV of the other drug here. I'll write some of this down, just for consideration of a future plan.
I then went off on a tangent. The last time I was here for a visit (not with you), you know what they told me? They told me that about 5-10% of our patients don't recover because of psychiatric/emotional blocks. It's very unfortunate that you're not responding to treatments.
I then said "I looked at J and the doctor as though they had three heads. Obviously that isn't what's going on in my case. My mother spoke up (as did my father) saying, yeah he's really grounded, the kid is most certainly not nuts. He's had therapy for over 20 years, if he's not "unblocked" by now, it's a little absurd. The PA agreed and said "Yeah, I'm pretty sure by our discussions that it's obvious you're biologically ill from infection, not "blocked" in any way that would keep you ill, especially given your response to various treatments like Malarone and Tetra. We've seen this happen before. I don't know why they said that, I can't get into their heads, but I do know we do see cases in which the patient is not compliant, or sabotages treatment and things of that sort that do impair recovery, but they're extremely ill, and it's true they sometimes come to treatment with not only the infections and the mental illnesses caused by the disease, but also with severe psychological problems from family history, drug addiction or other unrelated issues that were present before illness.
I laughed and said "Yeah, hook me up with that crack." Everyone laughed, and we all knew it was absurd.
She then laughed and said to my mother and father "You really need to stop beating your son, in a joking tone." It was hilarious, seriously.
Me, I'm normal -- well, in respect to the average behavior and thought processes of most human beings, you know? I'm not thinking or feeling unconscious destructive tendencies -- in-fact I've got a great girl (who you know and treat here), a great family -- who clearly support me (They're sitting right here now), and a place to live, good care, and I'm complacent in some way, considering it could be so much worse, you know?
She then said "Yeah but it could be so much better. And I said "Yeah, exactly, that's why I'm here, you know? It's just a long process,\. What can I do -- keep expending enormous amounts of energy railing against reality? It seems those who rail hard and are desperately trying to be heard -- which is absolutely reasonable -- are called nuts. Now they're implying that someone as sane, calm and focused as me isn't recovering because I'm a head case. Alright chief, ...... uh uh. So yeah, I looked at them like they were the ones who weren't looking at the reality of events.
No, the reality is I have a disturbing chronic infection which is poorly understood and I'm probably one of the most compliant and proactive people you see. The problem isn't me, and I'm not even saying it's them -- it's that we're missing something, period. They said "Well if you're not going to do the IV, we'll need to refer you to someone else." I said "Are you serious?" Let's figure it out instead of assuming.
She agreed. She said "Jeez you're passionate, it's true though."
I know you're the only one who was going to say "Yeah Mike, there are options."
She then started reading my list again and said "IVIG?" Who recommended this? I just said "Meh, it was thrown out there during discussions but it wasn't really a recommendation. I just added it because it was a related concept in the larger picture."
She then read further "Humaworm?" Mmmm, good, yeah we've not covered parasites of this sort at length yet, and I like this stuff. It's great. I've seen results in patients and I'd like you to hold off on it, but keep it ready on the backburner. Perhaps after the three regimens, or even this next one -- we'll see.
She then read that I'd listed Rife therapy. "I see it says you have an EMEM23D. You know, ok, yeah if you wanted -- it's your deal, you could do a month of what I prescribe, and a month on of the Rife, and then switch back and forth. It's only once every two weeks, right?" I said "Yeah, ok, I mean let's get real, although your office doesn't make any official statements (or obvious reasons), you've all generally looked down on patients who do go off on this direction. You've said that clinically you've seen patients not respond and rather they only flare-up from it."
Now what I've heard is entirely different. The response really have more to do with appropriate management and consistency. If someone is extremely ill, and jumps on Rife, yeah -- it could be a nightmare from die off, or....whatever other effect the machine has on the body. But everyone I know who has done it right and done it long term (even without antibiotics), shows good progress. They gain 5,10- or even more percent. It's no miracle, that's been made clear by all of the people who are seeing progress on it, but it's also no hocus pocus bull**** that fits only the criteria of your observations. It's worth a shot if you consider the risk to reward. We're dumping **** into my body here. Do you really think cancer or whatever other risks are somehow so much more apparent and threatening? No....
She agreed and said, do what you think is best in that respect. It's an option, no doubt. Pulsing it in etc.
We then discussed Muscle Testing. She said "mmmmm, I don't know. I mean it's very subjective. I know patients who did extremely well with it. I have one guy who calls me by phone for consults and I read off the options to him based, and he'll just say "Yup, nope, yup, nope, nope -- my body can't use that. The kid made enormous progress. Who knows? I just give him the options and I told him to pick and choose whichever he wishes to use.
She continued down the list and noted: Roxymycin. That's Europe, right? Yeah, you could use this if you could get your hands on it. This would be ok instead of Biaxen as an option too.
We then discussed the new study released last month on "Xenotropic murine leukemia virus-related virus (XMRV)". I told her it is a gammaretrovirus that was first described in 2006, It is only one of three now that we've discovered in this class for infections in humans.
She said she hadn't heard about the study on CFS and this, and so I told her the basics: The study released of about 104 patients, demonstrated that 67% of those with CFS, were positive for the infection, while only 4% of controls were positive. This is only a correlation. Obviously we do not know the cause and effect, but who would wait if they were suffering? She said "So like, we're talking about a virus very similar to HIV then, or..."
I said "Yeah, yes, in-fact the hypothesis currently under investigation is whether an HIV regimen would apply to this particular virus. I then mentioned a doctor down in Houston who was involved presently with finding a routine that may work. I also told her that testing would be available in 3 months (based on the Houston Drs report).
After we finished this discussion she began listing off what she thought this present routine should be. She said:
Lariam: 1 250mg every 5 days.
Malarone: 1 x 3 per day 250mg/100 per day
Rifampin 300mg x 2 per day
Levaquin 1 500mg x 1
Low Dose Naltrexone: 1mg per day
ALA 600mg per day
NAC 600mg x 2
Milk Thistle 1 x 3
Hepa#2 1 x 2
Theralac: 1 per day
Saccromycin: 1 x 2
Seraquel: 25 mg x 1 (break it up)
Seriphos 1 at 10 a.m. and 1 at 2 p.m.
We then continued discussion of the list. I labeled all the infections and abnormal factors that we've diagnosed since I began in the office.
Positive testing for:
CPN MYCON StacB Mold HyperCortisol RMSF Chronic Lyme Bartonella, Babesia Heavy Metals Vit D def Abnormal Bowel flora.
We can presume very reasonable that we've wiped CPN, RMSF, and MYCON off the map. The amount of treatment would have been devastating over a course of 8 years. Mold would highly highly unlikely survive VFEND and Diflucan, even in separate minimal 2 week cycles. My numbers went down significantly just with Diflucan. Aside from that, we already solved the mold issues in the house. I can test again however, but the AC's were washed and bleached carefully, the ceiling was entirely void of mold and repainted with anti-mold properties. We've addressed the Adrenal issue at length, and it's significantly closer to normal now -- we've got that under control and the labs prove that. The Chronic Lyme is clearly still a threat, the test was positive in-spite of ongoing antibiotics at the 7 year mark. Bowel flora is now normalized -- at least symptoms appear to clinically demonstrate that. Vitamin D supplementation was done heavily for a year, both prescription dose and then V3. I would think we've hit that issue pretty well. So that leaves Bartonella, Babesia and Lyme. We know the Babesia is responding to Malarone (Or at least something of that sort). We know I respond heavily to Bactrim, which we can presume is another infection -- probably this Bartonella you've diagnosed. Heavy Metals were done for nearly 8 months. That's plenty of time based on my numbers, but we ought to retest this and the mold.
The PA agreed with every single thing, and said retesting was needed for the metal and mold. She said it was nearly impossible (in her opinion) that any of the other infections aside from Bab, Bart and L would survive the long term therapies of the sort I've had.
Our assumptions could be wrong, but they are as reasonable as could be expected at this point.
I want you to use Reloraplex for the adrenals after you've finished the Seriphos. We can work that out at the next appointment in two months.
Recheck the mold in the house if you can, bedroom and living room -- that's where you spend all your time, right? I said yes.
The last thing we covered was the symptom pattern.
She saw that the sleep was the severest, as well as neurological symptoms. I mentioned I did have mild tenderness in the tendons while using the Levaquin (Levaquin also happens to cause insomnia, and this is how we moved onto this issue). She told me "Absolutely be careful for anymore symptoms in those tendons, we don't need a rupture, right?"
Ok, absolutely check Liver every week, and the CBC at least every two weeks.
[ 11-21-2009, 10:06 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
That's the long version. Sorry it's so long, but I basically transcribed the tape recording, so you're actually getting "the entire" appointment.
The short version of what we're trying is "listed" and in bold near the bottom of the last post.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Just wondering if you had ask the PA about Hyper-coagulation or Biofilms?
I saw you had such a detailed list that you may want to ask about those issues too?
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
Sounds like you have a great plan and that you really have not hit Bartonella for any length of time. That maybe the missing piece?
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks for the update MB. I hope the next course puts you in the right place. that protocol would KILL me. You must be made of titanium (same strength as WildCondor). Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I forgot those topics Stacy. I will cover it again. Yeah, the update was probably overkill, but the only part you all "really" need is the listed medications.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I am glad that you have a new sense of direction and some options for a plan. I personally like all the details you relayed. Definitely a strong protocol but I have done many like that too. Hope this time you get better results!
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Sounds good, Metallic!
I used Humaworm (I was actually on Levaquin and other stuff at the time but figured it was better to try it and ask forgiveness than wait for permission). Dr. had never heard of it and wrote it down and the website to check out later, put the note in his wallet.
Parasites were a HUGE part of treatment for me. I can't even stress how much it helped. I hope you do push them to let you address parasites!
Good luck with your new protocol.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I am SO glad this stuff is here to get a real-life assessment of what this office does. I have a keen interest in it. BUT, how does this not violate a LYmenet rule of discussing specific protocols from docs? We all know who MB sees.
I'm all for abolishing the rule and getting real data like this, but I don't run the board. I'm always amazed at how thorough the office is and how much more they consider that other LLMDs. They seem to be willing to try ANYTHING. That's very encouraging.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wowee, I really hope that the regimen you worked out with the PA will see major improvement over time. I am one of those people, also, who has tons of the various infections---over all or most of my life with uncountable tick exposures---including yet another one this year.
IF you don't see the progress you would like from this tack, I would really consider Tigecycline. Dr. B is talking about it and recommending it a lot. It has helped quite a few people a lot. And it does get the co-infections, except, Babesia. It's damnably expensive if your insurance doesn't cover it (mine won't cover any IV now), and it's only IV, but consider it down the line, if need be.
Also, rife, etc. is another way to go. But for right now you have more than enough to keep you busy!
At first this thread, and so many like it, is so discouraging, because I am afraid that it will continue to be my story, too, but I did have improvement before my tx came to a screeching halt, due to multiple problems. Hopefully, I will crawl my way back and then up from there.
It's awfully hard for those of us who have sooo much to work with. Here's to a new plan and improvement coming. Bart and Babs are such formidable entities, as is Lyme!
Posts: 3792 | From around | Registered: Mar 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: I am SO glad this stuff is here to get a real-life assessment of what this office does. I have a keen interest in it. BUT, how does this not violate a LYmenet rule of discussing specific protocols from docs? We all know who MB sees.
I'm all for abolishing the rule and getting real data like this, but I don't run the board. I'm always amazed at how thorough the office is and how much more they consider that other LLMDs. They seem to be willing to try ANYTHING. That's very encouraging.
Well, I signed documentation allowing them to do this. I'm well aware that we're performing some experimental work based on hypothesis as well as using clinical experience, observation and objective indications.
Not only that, but she knows that I discuss my visits openly with the Lyme Community. I told her that. She knows the work I do with the list, that I collect patients personal experiences, and her opinion was "That's great, patients should know what they're getting into." She said that's perfectly fine. Not only that, she allows me to tape record the appointments. I think knowing this, it's quite ok to post my experience. Also, I removed all initials from my posts. They all say either "PA, or my LLMD." It was an additional measure. Others are encouraged (Or possibly 6 could edit them) to change the initials and location. I think the posting is worth the effort to make such change if some feel overly concerned.
Another important thing to remember is that the office I see has already experienced legal issues previously, and now laws are in place that protect them when treating patients like myself. They can not be reported to a state medical board by any individual private insurance company. The only insurance they take is not private sector and has approved their methodology.
With all this said, I think it's crucial to permit me to demonstrate what a productive appointment with an LLMD "should" look like. If you're not receiving adequate time, logical treatment considerations, compassionate care, and instructive teaching (both to and from the care provider), then you're not asking enough from the doctor and you must speak up. Was what I did in my appointment overkill and unreasonable? Absolutely not.
An appointment should -- in my opinion -- be a brain storming session, not a dictation without thorough exploration and explanation.
Hopefully my post provides ample reason to justify what I've given for information.
Now remember, I did not receive this same care from others in the office. I've been vocal in the past to those who asked me privately how I felt about some of the negative things I experienced. I've also met people who did not prefer to work with the person I worked with during this appointment that you've just read about (The PA). They're reasoning was that they can't think clearly enough to discuss much, and rather they simply need dictation. Or, they feel the appointment is too "scattered" -- which is absolutely the hallmark of brain storming, and so that may not work for them. Others have said they felt that the style of my appointment (when they experienced it) was too pushy, to.... much, too soon. In other words, aggressive. And rightly so, she is far more aggressive and desires to move you as fast as you can into a treatment protocol. Notice that I made it clear I was not going to race to the finish. I'm calm, and going to go at "my" own pace, not hers or anyone elses. My concern isn't so much high liver counts or excessive herxheimer reactions, but rather sharp side effects. So what did she do when I put my foot down? She said "Good, that's perfectly fine, in-fact you can cut pills into pieces and increase like that too."
I think patients should see this. One last comment that should amaze everyone. The appointment only lasted about an hour. So go overly prepared. Feel free to ask me for the template I used. I really love sharing these things if it will help you formulate your own concise report for your doctor.
A complete report should include:
All diagnosis,
All medications we've used thus far,
The results of each medication,
Condensed symptoms listed, with indicators of how severe or minor the symptom is (1-10 scale works for each symptom),
All testing done thus far (with any unusual results specifically listed),
All presently used medications, including the date they were started, and whether the dose changed at any points.
When a case gets too complex, the doctor can't keep going back to your records -- your records are hundreds of pages sometimes, but with a condensed report, I gave 5 pages using only three pieces of paper, and provided them with almost a years worth of data. It took her under 3 minutes to read all the data. Now compare that to how long it takes you the average patient to provide a year of data? When I first saw the PA for the first time about a year ago, I had to give her my "entire" history dating back to when I was a child (I'm now 31]. The report Included 20 + years of material. Even after a full review of all records, the report was 17 pages long, but it was easy to find any particular piece of data when asked (Under 10 seconds)."
Organization makes appointments shorter and should make an LLMD much happier. If they aren't happy, then they aren't the right LLMD for me.
Ask for the template via PM.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted 08 May, 2009 01:59 PM -------------------------------------------------------------------------------- LymeNet Users,
The LymeNet Terms & Conditions contain the following: "You agree not to post the last name, or the first name, of any person that treats Lyme disease. Instead, please use the first initial of the last name only, with the state, but not city. For example, Dr. G. in WV. This person's contact information should not be displayed on LymeNet. However, you may PM or email this information. This is to protect those that treat Lyme and the Lyme community."
I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit.
Current HIPPA laws prohibit the doctor from discussing your care with anyone but you without your written permission. I suggest you respect the doctor - patient relationship by discussing any issues or concerns directly with the doctor and not posting them on an Internet BB
How can this thread go on and on? Lou B entrusted this board to Jenifer and the new mods- What part of: I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit. does MB and the moderators not understand?
Posts: 365 | From Sylvania | Registered: Aug 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
What I read in your diagnosis is that it was determined by clinical diagnosis you do not have bartonella. . . is this correct?
You have many symptoms of bartonella so I don't know how anyone could miss it. Some of you symptoms include forgetting nouns, sore throat, insomnia, rage, depression, muscle twitching, headache, eye problems, feet hurt and irritable bladder. . .
You said you greatly improved on levaquin but then relapsed - typical of bart. You said you got bad insomnia from rifampin, which is a typical herx in the treatment of bartonella which refampin is for. And you herxed on only 3 HH capsules a day? That is very much bart.
Just my opinion, but I think you need to address bartonella with another doctor.
Look at your skin for these indications of bartonella (you can also buy Schaller's book to see what I am talking about). peas size brown spots, loss of pigmentation, pin head size blood blisters, swelling around feet, ankles, hands etc that does not dent, stretch marks that are red or purple, spider veins, broken blood veins, marking resembling stacked clams, marble like nodules under the skin that hurt when pressed, lumps along the shin bone, unusual skin tags, moles etc. . . .
Do you have a loss of motivation and a general feeling of apathy as though not connected to yourself and life? I can't imagine growing up with lyme and bart! Of course you would be diagnosed with ADD! I hope you can find a solution. Don't give up.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
PS. See you are seeing someone that recognizes the bartonella and wants to address it now. Yeah!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit. does MB and the moderators not understand?
No disrespect to you JR, but That's a lot of suggestions, regardless of how strong they may be. Under HIPPA, I am permitted to use my records as I wish, the health care provider is obligated via HIPPA to abide.
quote: What I read in your diagnosis is that it was determined by clinical diagnosis you do not have bartonella. . . is this correct?
I am clinically diagnosed with Bartonella.
quote: You have many symptoms of bartonella so I don't know how anyone could miss it. Some of you symptoms include forgetting nouns, sore throat, insomnia, rage, depression, muscle twitching, headache, eye problems, feet hurt and irritable bladder. . .
That's most certainly me -- or at least I had those symptoms at various points.
quote: You said you greatly improved on levaquin but then relapsed - typical of bart. You said you got bad insomnia from rifampin, which is a typical herx in the treatment of bartonella which refampin is for. And you herxed on only 3 HH capsules a day? That is very much bart.
I thought it was the Levaquin, but at the time I was also fresh off IV Vancomycin and Oral Penicillin (A month earlier), and then when that ended, I ended up with sepsis from the PICC line and had to go to the ER. I was then given IV Levaquin and Oral Bactrim. I stayed on these for about 2-3 weeks.
I agree, I have some doubts, but the symptoms match the profile, so it's possible, especially given my response to antibiotics and antimalarials. It's not a far reach to presume Bartonella can be correlated.
I'm now presently on Levaquin, and I see little results after over a month of treatment. I tried to repeat the results and used each drug alone. Bicillin via IM (in place of oral VK Pen), Bactrim, and now Levaquin. The only one that caused a sharp reaction was Bactrim. Vancomycin can not be repeated as I am allergic.
quote:
Just my opinion, but I think you need to address bartonella with another doctor.
I agree, but instead I addressed it with the PA, who by the way I consider to be much better at her job.
quote: Look at your skin for these indications of bartonella (you can also buy Schaller's book to see what I am talking about). peas size brown spots, loss of pigmentation, pin head size blood blisters, swelling around feet, ankles, hands etc that does not dent, stretch marks that are red or purple, spider veins, broken blood veins, marking resembling stacked clams, marble like nodules under the skin that hurt when pressed, lumps along the shin bone, unusual skin tags, moles etc. . . .
I've read the book.
quote: Do you have a loss of motivation and a general feeling of apathy as though not connected to yourself and life? I can't imagine growing up with lyme and bart! Of course you would be diagnosed with ADD! I hope you can find a solution. Don't give up.
Thank you very much for your concern and for giving me all this information. I have taken measures to resolve all of it. Now let's just hope I don't have massive side effects or any other complications from the new treatments.
[ 11-22-2009, 01:40 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by JR: Lou B entrusted this board to Jenifer and the new mods-
What part of: I also strongly suggest you not posts the specifics of your treatment protocol or the detailed discussion / dialog that took place between you and your doctor during your office visit. does MB and the moderators not understand?
LouB was a GREAT moderator/administrator of this board. Well-loved and respected by all. It has been difficult to step into his shoes and moderate this board. Questioning our abilities publicly does not help.
JR and anyone else, in the future if you have a question about a post and want the moderators' attention, please press the "report post" icon under the post and write us a note. It will come to us so that we can discuss it with you privately. Thank you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
MB I did not realize you had a picc line before and have done all those IV abx and such.
Are you still thinking of getting a port? or no?
I am so happy I got one and am doing IV abx because I finally feel like I am actually getting somewhere. Not sure how long you did the IV treatments or what they were.. but.. curious what your thoughts are.
??
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Hey Spring. Yeah I had a PICC line in 2005. I received IV Vancomycin for about 4 1/2 weeks, but I was allergic and had to stop that an the oral Pen VK.
I think IV is exceedingly useful for many people, I'm just not thrilled to go that route after what happened. Sepsis was a real *****.
Which antibiotics are you on? Eventually if none of these treatments work then we'll move onto IV, but not before exhausting lesser risk options.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Oh sounds like you went through a lot .. Ughh that sucks..
I can see why you would want to exhaust the others first.
I have had not complications with my Port. It took me awhile to adjust to it and I am a sensitive person so It was weird for me..
I have been on IV for 3 months now. I did IV zith and IV Flagyl for 2 months straight. 500 mg of zith and 1500 mg of flagyl. Now I am on Doxy IV and am pulsing it 3 day s week 400 mg. I do ringers solution on my days off and also now pulse in some other things such as alinia and plaquenil and trying to make sure I have the cyst killers in there and also doing Artimisinin.
Ok prior to this.. I could NEVER tolerate any of this. I went through a lot the first two months. But it has now gotten me to where I can treat this disease. I spent years taking tiny doses of this and that or having such trouble taking oral meds and being told it I was herxing. I still do not know if my load was so high or I have some sort of issue taking orals. I dont know. I just know. This is 100 percent different for me. I know I will have to transition back to orals at some point. Either insurance will cut me off or my doctor will say enough. Not sure when that will be.
But I am going to stay on this.. for sure.. as long as I can. I am not cured or even "well" . But I have made huge moves in a short time frame compared to the 10 other years of trying to change things or get better. It took me 7 years to get somewhat better on orals and I relapsed. I knew I did not have 7 plus more years to inch back to that place. I just had to try the IV route. Glad I did.
Everyone is different. So..who knows.I have heard it does not help them and they like orals better. This disease is a mess and there is no one answer that will help us all.. sadly.
But learning from one another does help.. I think sharing has been the biggest learning experience I have had and I have only been online on the forums and such for a year.
So. anyway. i wish you all the best.
I noticed too there was a comment about checking out the mold or such in your house. Have you done that. what methods are you using? are you just using those mold growing kits and putting one in each room and outside to compare? or??
let me know.. i am needing to check out my house..
Thanks..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Update:
I'm responding again to the Malarone. It caused some significant depression at first when I increased from 2 tablets to 3, as instructed.
My LLMD told me to expect it, so mom and I watched out. I'm better from that, but now I started the Rifampin, and "oh my god" it's hitting something. I feel like the worst I've felt in probably years. Some type of die off is going on. I'm hopeful it's just that and nothing anything else. It "feels" like a massive herxheimer reaction. The side effects have been typical: some anxiety, red/orange urine, and debilitating insomnia.
The Seroquel did not work. I also tried the Xanax, and just like Valium, it caused the "reverse" effects that I wanted. My heart was pounding all night with anxiety and insomnia.
Last week while using the Rifampin, I was around 25% function. If I dropped to 20, I would have had to stop and contacted my doctors. 20% has always been marked by hospitalization, but now that we know many of the pitfalls from years of doing this, it would be unnecessary as long as I stopped treatment temporarily. Herxheimer reactions can literally kill if they cause acute damage during the immune system activation.
I'm waiting on the Rifampin blood work. I stopped it last Friday so I could get the results back to make sure my liver is ok. Hopefully the liver support my LLMD gave me does the trick.
I wrote a thread here about the events with the Rifampin:
quote:I noticed too there was a comment about checking out the mold or such in your house. Have you done that. what methods are you using? are you just using those mold growing kits and putting one in each room and outside to compare? or??
I have the test kits but I haven't used them. I've had too much going on. My numbers keep going down each time I test the Mold, and I've treated it extensively, so I probably am ok, but the method I'm supposed to use is the kits. I have two of them. My LLMD told me to put one in the bedroom and living room (Where I spend all my time -- I also had my AC's in those rooms).
So anyway, that's all.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Sorry to hear all the hell you've been through MB.
I wish there was a way for you to try HBOT - sometimes just a couple of treatments will give a good indication whether it can provide a cure or not.
It sounds to me like you have heavy biofilm buildup - I can't imagine anything else that would withstand the onslaught of treatments you've been through. I was reading something last night about researchers looking into the chemicals used to clean pools because a variety of bacteria form biofilms on the side, but didn't see anything that looked like results you could use. I don't suggest drinking bleach:)
On the biofilms note, however - have you tried any of the proclaimed cures for biofilms? I've seen a few herbs suggested as useful in breaking them down.
My apologies if that was already covered, it's a very long thread.
Posts: 98 | From Maine | Registered: Jul 2009
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sixgoofykids
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Haritaki is good for biofilms. I could not take it in the form of Triphala, it was too strong, but Banyan herbs makes Haritaki alone. It is the herb that was used in that famous science project where the girl learned it broke up biofilms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hi all - it's been a while. I (unknowingly) broke up biofilms using Detoxamin (chealtion) in the fall and had a massive relapse!
My LLMD and I had know idea my bug load was so high. I had been functioning at about 90% or so..
It's been a rough few months..
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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METALLlC BLUE
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So I began back on Tetracycline temporarily so I could take a break (symptom wise) from the last year of abuse I've subjected my body to. I've been working with Dr. H in NY, as you know. We tried everything except IV. He wanted to do it, I declined for now.
At any rate, exactly on the date I said I'd be very sick from the Tetracycline Herxheimer reaction, I am. Wednesday (today). I began the drug March 2nd, it is now 8 days in. By the 12th day I will improve from 35% to 40%. If fortunate, by the 14th day, I will improve to possibly 45%. I will then hit a plateau and remain there.
I have tried all the conventional drugs we typically use for Lyme, including Minocycline and Doxycycline. Yet, why is it Tetracycline specifically is the only one to produce this perfectly timed Herxheimer response and then improvement period?
The only other drug to cause improvements which were similar was Doxycycline. However, the Doxycycline loses it's effect after about 1 month. The Tetracycline doesn't lose it's effect for 6 -7 months, then it must be stopped for 2 months, and then rinse and repeat (8th day Herxheimer, 12th day Improve).
The other drugs which caused similar reactions in half that time (4 days) were Bactrim and Rifampin. Rifampin caused the Herxheimer reaction but never led to progress of any kind. Bactrim was discontinued due to side effects.
What is the common denominator here? I don't know. Tindmax, GSE, and other drugs showed no progress or change.
Lyme is definitely present. Testing confirms that, Malarone caused a significant decrease in breathing problems and night sweats, so it's presumable. The short reaction time to Rifampin and Bactrim are intriguing. The Herxheimer reaction caused by these two drugs is much different than those caused by Doxycycline or Tetracycline. They are perhaps 3 times worse, but also are shorter in duration. The reaction on Tetracycline lasts 2-4 days, the reaction to Rifampin and Bactrim lasts 1-2 days.
We could assume Babesia, Bartonella (or some other unknown infection), as well as Lyme Disease are responding to these drugs. Malarone led to improvements in night sweats and breathing, while Mepron, Zithromax, Arthemesiae, and Lariam did not.
It appears Penetration of the drug may be the problem. LDN did not result in any changes. Adrenal therapy improved test numbers drastically, normalizing their function, yet no symptomatic improvement took place. Three rounds of VFEND/Diflucan substantially lowered Stachybotry Chartarum IGA numbers, probably close to normal now, though I have not retested. It is assumed given the numbers lowered by about 1/3rd to 1/2 each cycle. Initially 6.9 (without treatment), then 4.8 after 10 days Diflucan, then 3.2 after about 12 days VFEND. I have just completed 17 days of VFEND. Given the last number was 3.2, the average decrease should be about 1.2 to 1.6, dropping the number to 2 or less. Normal is below 1. 17 days is a long cycle, so the number may even be normal. No progress in symptoms have been made, even as this number dropped.
The next therapies on my list are as follows.
Continue using:
Lamictal, 200mg x 2
Buproprion (Welbutrin) 200mg
Trace Minerals Research (liquid) 30-40 drops per day in Filtered water.
Chemet 400mg every 3rd night w/10 drops Algas, and 7 tablets Chlorella. (Detox for heavy metals).
Heel Detox Homeopathics (Liver, Kidney, Lymph)
Cholestapure (Detox Binder)
Lorazepam 2mg (Sleep)
Pentasa 1,000mg x 2 (Bowel inflammation)
Tetracycline 1,500mg
VSL, Theralac, and Saccroymycins Probiotics)
Magnesium 1 gm
I'm also eating reasonably well, and juicing vegetables (Green/Red Pepper, Carrot, Celery, Spinach, Brocolli, Cucumber, Romain Lettuce). I add Stevia, 1 packet
Fruit Shakes (1 apple, blueberry, strawberry), 2-4oz Uncooked Oatmeal, 1 cup Soymilk, 2oz Cottage Cheese, 8-16oz Filtered Water, and Whey Protein. I also add stevia 1 packet.
(The Veggie/Fruit shakes are done bi-daily. One day I do Veg, then next day I do fruit).
Dietary wise, I feel solid. Yeast issues are not present, and Lyme specialist agreed. Different diets were tried. None resulted in changes in symptoms other than bloating/gas. These symptoms change relative to gluten intake, but also to inflammation. When systemic symptoms improve due to drug therapy (such as Tetracycline), the bowel symptoms improve independent of diet.
My next plan is to cut out some of the things from this current routine, leaving a barebones framework. Cuts will be Tetracycline, Theralac, Algas.
Treatments which worsened symptoms in a "non-Herxheimer" response were Fish Oil (Multiple brands), and Vitamin D2 and D3.
Transfer Factor Plus led to "significant" improvements when used entirely alone 9 years ago. I'm going to give the latest brand another shot. When I improved, It only lasted one week, but the improvement was from 25% to about 50-55% at 9 capsules per day. Cost wise, this is not sustainable. No herxheimer reaction or flu-like symptoms were seen.
I will be starting the Bionic 880 in a few weeks. Rife therapy will wait as a result of the shorter treatment duration of the Bionic. All necessary tools will be used in the same pattern that Dr. W in Germany uses. However, instead of IV, the preparation of Sodium Bicarbonate will be taken at the same dose orally. I will try hard to cut my drug treatment to bare minimum, but it will not be entirely possible to remove them all, which is what Dr. W prefers. I will also be unable to avoid EMF fields, as I live in the city of Springfield.
If progress is not made, I will attempt to use the Bionic in another location where EMF is significantly reduced. Nosodes and other tools (Blood sample) will be used later.
That's my update.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
See, you are one with a plan. You've done your research. You know there is a much bigger picture than just taking some abx and miserable. You will change that plan, adjust that plan, anything to help yourself.
Someone questioned your protocols in an earlier posts I was reading. It's just so much more complicated for those of us experienced to tell others:
A+B-D+E-divided+F=success!!!!!!!!!! If one of us could patent the formula we would be rich.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6486 | From Louisville, Ky | Registered: Jan 2002
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seekhelp
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Good luck MB. I wish you the best.
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djf2005
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posted
Good luck Mike, I know that your diligence will pay off. Keep at it.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
CD57
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posted
By Chemet, do you mean Chelex? I thought Dr H liked that product.
Posts: 3528 | From US | Registered: Apr 2007
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sixgoofykids
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Thanks for the update. I'd stop abx two weeks prior to the Bionic.
EMF's were a problem in the beginning for me when I returned from Dobel. I bought a Philip Stein watch that counter-acts EMF's and haven't take it off except to shower since I bought it two days after I returned.
It took almost a year with the Bionic to reach remission. And, as you know, I did lots of detox along the way with it. Good luck!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
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posted
Chemet is the prescription version of Chelex. It's used for heavy metal toxicity, especially lead.
Where did you buy the watch Six? How did you know that EMF's were an issue for you?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sparkle7
Frequent Contributor (5K+ posts)
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posted
Good luck, Metallic Blue!
I'm rooting for you! I hope you can come out of all of this illness & treatments someday soon.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sixgoofykids
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I bought it in Las Vegas, LOL! You can buy them at their website though ... and on the website I believe they have listings of jewelry stores that carry them.
Interestingly, part of their sales pitch is doing muscle testing in the store. I saw the muscle testing on my husband using a cell phone that was on but not in use with and without the watch and was amazed. I bought it on the spot. This was two or three days after I returned from Germany.
I became sensitive when I started Bionic 880 treatment. I think that the treatment is doing things on the "physical" level (as in physics, not chemistry). That change made me feel strange when I was around heavy EMF's.
I am okay in a place that has wireless internet, but if someone is near me with a computer working off the wireless I can tell their wireless is on .... ie, my daughter turns her wireless on at work and I feel bad if she's next to me at home and has forgotten to turn it off .... not nearly as bad as I used to, now it's just a little energy drain.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
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Interesting. I'll wait to see if I react. As far as I know I've never reacted differently from the day I got sick until now. When I travel, it also didn't change.
I'll see what the Bionic dose. I do know the Tetracycline is causing me to still experience die-off today. It's Thursday, 9 days in, so only 3 days left until I feel better. (That's the prediction). Then Erica will arrive, and I'll begin therapy with her.
The Infusions may be an issue since it's not usual for physicians to be helpful with this type of thing. I'll see if my own N.P. is willing to help.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
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posted
Did Erica get cured in Germany MB?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sixgoofykids
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When I returned I didn't have the infusions. I took magnesium, burbur, drank a lot of water and used coffee enemas. Infusions would be best though. No telling how much help they really were especially since they had zinc and I needed KPU.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Summary of Events: Treatment works, but it's not going to solve all your problems overnight. It takes work, it takes a lot of sessions (More than 5). I did 13 and I only made it to about 40-45%, and I was at 30-35% when I began. I don't know how it works, but it does.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
MB, How old are you? Have you satisfied yourself as to the origin of your high mercury/lead? You mentioned a low vitamin D, I didn't have time to read the whole thread (longest one I've seen, btw) but have you tried correcting that?
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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METALLlC BLUE
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quote:Originally posted by DoctorLuddite: MB, How old are you? Have you satisfied yourself as to the origin of your high mercury/lead? You mentioned a low vitamin D, I didn't have time to read the whole thread (longest one I've seen, btw) but have you tried correcting that?
1: 33 2: Yes, a lot of chelation over a year. 3: Stopped Vit D, makes me feel sick and the sick feeling does not resolve no matter how long I stay on it.
I am feeling better, and I am stable at 35-40% without antibiotics. The next step is killing these little bastards that remain.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
But what was the origin of the heavy metals? Amalgams? Tainted groundwater? Proximity to smelting operaton? Chelation can help, but you must halt ongoing exposure.
I would posit that the low vitamin D is related, and understanding why you get sick when you take it (do you also get sick when you go out in the sun?) might help you find a way to get your level up without getting sick.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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METALLlC BLUE
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posted
I have news. Between my last response on Marchy 7th, I had been continuing Rife therapy using an EMEM3D2 machine at various frequencies. I have recorded and charted every single session in a chart as well as a one page write up. Rife therapy I believe hold benefits, but I believe that depending where you are in your illness, the type of power you should use makes all the difference.
For someone who is just beginning, an EMEM3D2 might be key, if they've done minimal antibiotics, and want to start Rife.
For someone who has treated Lyme an c-infections for nearly a decade with heavy duty antimicrobials, herbs, and 30,000 dollars later worth of therapy, a high powered Coil Machine is the way I'm going to go.
I'm awaiting for my order to be filled with John Stoller, but in the meantime I decided to add one varible to my routine. Since I was at baseline, it couldn't hurt.
[04-24-11] - Sunday
I began taking a cheap OTC product called MSN, which stands for Methylsulfonylmethane (MSM) is an organosulfur compound. The organic sulfer component does not cause allergies or side effects but is said to have profound anti-inflammatory effects, reduce allergies, reconcile Fibromyalgia type soft connective tissue pain, as well as treating severe athritis. The dose is extremely crucial as most people who use this supplement only take small amounts. Initially only 2 grams should be used once or twice a day, then as time goes on and a clinical response is see thru improvements, more is added until 4-8 grams is commonly taken. Some severe illnesses respond to doses as high as 60 grams. Fortunately, the supplement is dirt cheap and can be purchased in bulk. I bought 2.2 lbs of the organic crystals for 20 dollars. Given my reaction, let's hope it's followed by improvements in key areas.
I began taking MSM Sunday Morning at 2grams in the morning. I repeated the same on Monday. By Monday evening I started have excruciating headhaces and had to take pain medications (Ultram).
Here are the notes I took while it happened:
[04-25-11] - Monday
I laid in bed all night awake, even with large doses of Ativan, Sleep Aids, and Ambien. I had chills, fever, sweating my skin hurts to touch, my eyes are sensitive to light, and my ears are sensitive to sound. I have a serious migraine that is not responding to high dose Ultram, a prescription pain medication. It feels like the Flu multiplied x 10.
It is not a flu however. All my muscles ache and throb and walking on my joints or using my arms creates a poping sound, combined with arthritic pain. Clearly this is a Herxheimer reaction. I performed Rife therapy yesterday. MSM) is an organo-sulfur compound. The organic sulfer component does not cause allergies or side effects but is said to have profound anti-inflammatory effects, reduce allergies, reconcile Fibromyalgia type soft connective tissue pain, as well as treating severe athritis. The dose is extremely crucial as most people who use this supplement only take small amounts and the purity is not usually know. Initially only 2 grams should be used once or twice a day, then as time goes on and a clinical response is see thru improvements, more is added until 4-8 grams is commonly taken.
Some severe illnesses respond to doses as high as 60 grams. Fortunately, the supplement is dirt cheap and can be purchased in bulk. I bought 2.2 lbs of the organic crystals for 20 dollars. Given my reaction, let's hope it's followed by improvements in key areas. The product I bought I confirmed was in-fact 99.95 pure Methylsulfonylmethane. I wanted no added ingredients and no fillers and I found someone who had the perfect product.
[04-26-11] - Tuesday:
Alright, here is what I presume is happening. I took a shower last night, but I had to hold the wall. Everything was pinning and "heavy." I cleaned up, and immediately I began profusely sweating.
All night long I saturated my clothing and bed sheets and pillows. I changed them over 15 times each. This pattern of symptoms is associated with a parasitic infection similar to Malaria. It's found here in New England in Ticks, and produces very similar symptoms. Upon killing it, it too produces a die-off reaction. In other words, if you treat it, it makes you must must sicker for a few days during early therapy before improvements take place.
The next issue is Bartonella and Lyme diease. I've never had a strong reaction to antimicrobial medications like this except for the antibiotic BACTRIM and IV- Vancomyin, which is given in the vein.
[04-27-11] - Wednesday
Now, my joints don't hurt and aren't stiff like there were, but I am still sweating and feverish. I still have muscle aches and mild fatigue but the worst is over for now -- until the next dose of MSM kicks in. Instead of taking a break today, I took the same dose of medication from yesterday. I'll tough it out. I won't die, so it's a good idea if I want to get to the other side. I won't be able to do my Rife treatments, or Ride the exercise Bike or do any type strenous activity which sucks.
This is key information for people to consider, as I never provide reports until I'm 100% confident they are having a strong noticeable effect. Whether that effect leads to improves, I don't know. That's really the key issue, but these preliminary results are a start.
[ 04-28-2011, 10:17 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Any chance you have a detox pathway defect, i.e., can't detox or process sulfur?--thus the cause of these symptoms?
I hope it is a herx reaction instead and that you continue to improve!
Thanks for the update--always interesting info--look forward to reading more updates as you go along.
May it bring the relief you seek!
Posts: 648 | From northeast | Registered: Feb 2009
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METALLlC BLUE
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[04-27-11] - Wednesday Continued
The chances of it being a detox issue are extremely slim since I've never problems with Detoxification and I've used Sulfur medications.
I also took my morning dose of MSM and I'm still continuing to improve. Also, MSM has never shown to cause side effects of significance even in people with multiple chemical sensitives or people who had "sulfa" "sulfite" allergies. I took a nap and didn't sweat once during the naps.
I'm able to move around more, I have more energy, and I can easy do some light task if I wanted, such as clean up my kitchen, or fold some laundry.
I'm not doing these things however, my body needs time to recover.
[ 04-28-2011, 10:18 AM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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