He told me I could possibly have one of them but if it was some type of bacteria it should have been long gone with the combo's of abx I have taken.
If its a retrovirus like HIV or XMRV then abx are useless
I also think that on top of infections genetics are also a huge factor. Some people do not get sick regardless of exposure -their bodies control infection and damage.
There is a lot of environmental damage as well (from air and water pollution) so all those factors combined cause the disease.
Posts: 856 | From MA | Registered: Jul 2009
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METALLlC BLUE
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quote: CD57 Metallic, what about Avelox?
I know a patient of your LLMD and his PA who is done with treatment from IV Rocephin, IV Avlox, malarone, plaquenil and something else, pulsed.
Never used it. What is it?
quote: Parisa It's late and I'm too tired to read all of the responses but I wanted to say that my husband never herxed alot. However, he did improve on certain drugs. We never saw big improvements with Lyme drugs although we do know that it is in the picture. Where he did make big and obvious improvements was with Babesia treatments.
The first round of mepron (4 months) there was some improvement and the thought was we had addressed it. Other drugs were rotated in for about 7 months when we determined the Babesia needed to be treated some more as he was declining versus improving at that point.
IV Flagyl brought alot of improvement. I don't know what the difference would have been versus oral. Malarone was added to it and again more improvement noted. There was three months of Flagyl and about 8 months of Malarone.
I believe IV Zith was added after the Flagyl was retired. He then was shifted to IV clindamycin and quinine - about 4 months worth. At this point, it looks like the Babesia has been knocked out.
IV Clindamycin and Quinine, with IV Tetracycline, IV Flagyl, these are all possible ideas.
quote: ParisaEarly in his treatment my husband did about 8 months of artemisinin and zithromax but never got great results with them.
I think you should try the antibiotics you haven't tried to see if you get results, treat your babesia more aggressively and for a longer duration and possibly with IVs, and also use meds you know have worked in the past but for longer duration.
The fact that you have had some improvement is a good sign. It means that you are a responder. It's just a matter of figuring out what you will respond to (and you've definitely been through alot of meds).
We're working on that. I also did not respond to high dose Artemesiae, with Zithromax. We know it's infection causing my illness. I am going after the Bartonella next, and attempting to increase the Babesia therapy.
quote: Robin123 Mike, I haven't read thru all the thread, but have you tried treating with a PEMF machine? It's a magnetic machine and restores the body's electromagnetic flow so everything works better.
No I haven't.
quote: kim812 MB- I had testing for everything you can imagine. The first visit I had with JF they took 13 tubes of blood. I had previously had the WB done and all the co-infection testing. If you want more specifics on the testing I will be happy to list them for you. Mostly it was Virus's and other bacterial infections I had never heard of.
When they started suggesting I go to other doctors that is when I knew they had no clue as what to do. I was having phone consults with JF that were very unproductive. He would take me off one abx and two months later put me back on. It was turning into alot of confusion and questions.
I have done two rounds of IV and they were not successful. He really doesn't like doing IV because he told me people 90 percent of the time relapse afterwards.
I have to say that the one thing that made me lose faith in them was when I was on IV in March 2009 and they told me to discontinue it but to leave the line in. Well that line was in for 2 months unused. I even had an office visit and said what should I do have it pulled and he said no.
So finally at the end of May I called JF and said I want the line pulled and he said oh well maybe I will start you on some zithromax IV.
I told him that this had been unused in 9 weeks and now all of the sudden you want me to do Zithro. I said NO I was having it pulled and that is the last time I spoke with them.
I truly hope you find some relief from your symptoms and I think you made the right decision to take a break from them. It was very difficult for me to travel out there too.
If I were to do IV, I would be far more likely to try the other ideas offered. IV Tetra, Tigecyline, IV Flagyl, IV Clindamycin (Quinine IV?), IV Levaquin, etc.
quote: kim812 My main symptoms which I had from the very start are chronic fatigue/total physical exhaustion, calf pain (twitching-shooting-burning). I have also had many other symptoms including- eye pain tingling and pinpricks (hand and feet) insomnia and very poor sleep quality sweats night and day low blood pressure lightheaded when standing up hand stiffness no appetite weight loss abdominal pain
Same as me basically. Well, If you see my list higher up on page 2, you'll see the whole list, but yup. I had all of these. It's definitely infection driving this and I'm positive it's not antiinflammatory effects from the Tetracycline, otherwise Minocycline and Doxycycline would have helped -- and.... the symptoms wouldn't take two months to return after discontinuing Tetracycline. Whatever it is, is probably low load, low level infection.
quote: kim812I can't think of others at the moment. The physical exhaustion is my most debilitating symptom. I have had to totally change my life due to this and no abx have helped with either of my two primary symptoms.
I wish you luck in your quest for better health and I will continue on as well. The letter to JF was great...I probably should have written one to him too but at the time I was extremely disappointed and a little upset with how things turned out with them.
Thanks, I sent the letter last night after making some minor revisions at the bottom. I wrote this instead for the conclusion:
"I am still ambivalent about the IV treatment, for the reasons we talked about. I'd like to explore my co-infections further first if that is acceptable?
I will perform my current treatments under the supervision of my PCP. You can expect to see me at the office in December probably. The trips are exhausting as it is, so this break will help me. If treatment fails due to side effects, I will terminate and go back to Tetracycline temporarily untill I see you. If treatment is useful, I'd like to add to it and get further insight from you at the appointment. If you have an immediate concerns or thoughts, feel free to respond."
quote: cleo I agree with myco's statement not high enough or long enough. I did not respond until the 4month on the same combo. 1 to 2 months is not long enough. I sent you a pm.
What I find strange is that when I do respond to something, it's immediate. Tetracycline, bang, Herxheimer 8-9 days in, then by the 12th day, symptoms begin lifting. Same with Doxy (except the Cape Cod trip ruined it when I overdid it). Doxy never did return my progress. Malarone also responded very quickly. It was about a week. Bactrim also causes an immediate response (5-6 days in, Herx, then improvement around 8th to 9th).
So, It's possible duration is the issue, it just isn't something I'm going to explore at this time. I've spent 7 years working with "duration" and staying on some drug combos for 6-8 months -- infact, I'm coming up on my 8th year. I've got to take the risk that the time frame isn't the issue as much as dose and type of medication or treatment. The only "duration" treatment I'd consider at this exact moment is Rife and Levaquin. If I must, I'll return to "duration" drug trials later.
quote: Abxnomore I agree with cleo and myco. Why not try IV for a extended length of time, six or more months with levequin? If after that, you still get don't get any results than I would give up on the ABX route.
But IMO until you get on IV and some heavy hitter orals in high doses along with a cyst buster for a "long" period of time I'm not sure you can tell for sure that you have reached the end of the line with ABX. You seem to have a lot of neuro symptoms. IV is what by passes the stomach and gets right up to your brain. It usually is best for helping clear neuro symptoms but not just IV alone....aggressive oral treatment along with it.
I agree, I haven't reached the end with Antibiotics, I just don't have it in me to make an attempt right now with IV. I've burned out after nearly 8 years of playing with antibiotics. I'll keep in mind everything you've mentioned and possibly return to it once I don't feel burned out on this issue.
quote: keltyl This thread is scaring and depressing me, since I see the main LLMD and his N.P. also, as I mentioned earlier in this thread. A year and 1/2 with no improvement either.
Now doing IV Rocephin, Factive, and plaquenil. I really don't want to think I'm wasting all this money, worst of all, that I'll never get better.
I see him next Wed. I've actually only seen him once since I started, so maybe this will prove interesting. I haven't found the Factive of any help either, and I've been on it everyday for several months.
I will be seeing a Dr in NYC in Nov. for parasites. I keep thinking maybe this is holding me back, b/c of what I have read on here. Hoping it's not another dead end.
It's a pain in the *** process. Just keep knocking and someone will eventually open the door.
quote: onmyway
I also did 5 mmonths of TYGACIL! I also threw a blood clot and got a pulomnary embolism. However it was the oe drug I fetl it jumped me from 40% to about 75%! if you tolerate tetracyclines it is was better than IV DOXY!!! Most people have a hard time tolerating it though due to stomach issue. I was ready with anti-nausea meds and made it through 5 months. Think hard about that one. They say it is one of the best!!!! Good Luck!!!
Wait, which one are you talking about? Tygacil? You got a blood clot and embolism from what? The line?
quote: CD57 what about gentamicin?
I haven't used it. It's a possibility.
quote: Abxnomore Frequent Contributor (1K+ posts) B12 Methylcobalamin, adrenal support, heavy metal toxicity testing and removal, candida, detox issues that have been discussed at length in anohter post regarding Phase 2 of liver detox, and neuro transmitter testing....a very important over looked issue.
I haven't done the Neurotransmitter testing. I'm keeping a note of it.
quote: tosho Hi,I haven't read whole topic (it's long) but I wanted to say that I am also patient of your LLMD and we can't find anything that can help me. One time I asked the doctor and he said that about 10% of his patients have poor response to treatment. My previous LLMD also couldn't help me despite many efforts. I think it's very important not to give up. From my observation - also from my local lyme people - 100% of patients who are overloaded with coinfections (babesia, bart, myco, chlamydia all at the same time + other co's) are extremely difficult to treat. I know persoally about 10 people that are positive for all this co's and they improved 0% after 1-2 years of abx. How discouraging. I am myself 3 years into treatment with close to zero improvement. (about 2 years in total of abx and 1 year of 'natural therapies', e.g. Klinghardt)
I second other people's opinion that it's important to stay on one regimen of abx and not switch without reason. For me cell-wall abx like Rocephin and Bicillin were useless.
Abx that I react to: doxy or mino - I herx on these - derealisation kind of feeling + wave of flu-like fatigue rifampin - keeps my bartonella "in check" propably I will restart it soon as I am now on Bactrim that plateaud. tinidazole - flare of fatigue. macrolides
And I'm infected with all of those you mentioned. Well, it's hard to know if I still am after all these years of treatment, but the ones we are absolutely sure of is the Lyme and (Something responding to Malarone).
The big question for you is, when you react, how long did it take for you to react to Mino/Doxy? A week? Month? I suspect it's sooner than later.
quote: seekhelp Reply With Quote There is some incredible information in this thread, but tough to take in. What completely blows me away is how many here can AFFORD or get coverage for 8 months of Vancomycin, 6 months of Tygacycline, a year of IV Rocephin, 10 months of double-dose Mepron, etc. Is there a bank with a teller handing out Benjamin Franklins I'm not aware of?
This could turn into a big problem for me eventually.
quote: Tosho I wanted just to clarify, that I was talking about patients that are positive for all coinfections all at once (babesia, bart myco and chlamydia). These are usually the poorest responding to treatment and difficult to treat. It's important to keep in mind that about 90% of patients improve on long term abx without so many problems. Just a note not to discourage others from treatment.
That is exactly what I noticed. My doctor says (In Under Our Skin), that his patients are coming in "more" co-infected and much sicker than there were even 10 years ago. I'm one of those 10% cases. My last LLMD said so too. I have a positive IGG and IGM Lyme test "after" about 5 antibiotics that were taken for far longer than 6-8 months in multiple 4-7 cycles. That's a long time for Lyme Disease to persist inspite of appropriate antibiotics. It's highly probable the co-infections are really holding me down.
quote: massman Einstein's definition of insanity is doing the same thing over and over again and expecting a different
I heard Dr. Wormser and Steere say the same thing when referring to treating Lyme Disease for more than 4-8 weeks. Their argument rested on "It's insane to keep treating a patient beyond the recommended guidelines when multiple multicenter double blind placebo controlled trials have shown that patients with persistent symptoms (after having had Lyme Disease), don't improve with long term antibiotics. The problem is, we have quotes that say "If you don't succeed at first, try try, try again." So which is it? So, it's a bit easy to mock the fact that patients are all at different places in their exploration of treatment. People can't try every technique all at once. There has to be a process basded on their willingness and tolerance, as well as what is probably resonable between them and their specialist. They can't be expected to just jump off antibiotics because it hasn't worked in a year, when a year and a month may have been the difference.
In my case, the same rule applies, the difference is I've hit a wall and need to rest after having done "tons" of cycles of long term antibiotics. Maybe I didn't do the IV for years, but trust me, I've done a lot, over almost a decade. Does more need to be done? You bet. Do different things need to be done beyond antibiotics? I suspect so.
[ 11-22-2009, 01:23 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: CD57 MAssman you can't detox an infection.
I agree in respect to the issue that I've done extensive Detoxification protocols. Transdermal Glutathione, Nebulized Glutathione, NAC, ALA, Algas, Chlorella, Chelex (with DMSA), Pekana, Colon cleaning, Infared Sauna -- and on and on.
The issue for me, is the infections. I'm not "scientifically" certain, but I have a lot of lab tests showing a lot of positive infections, and I've been on a lot of antibiotics, which seem to "not" be reducing the positive testing -- at least for the Lyme.
I'm still responding to some antibiotics and antimalarial treatments, so I think it's safe to presume we're dealing with a persistent chronic infection(s).
-------------------- 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.
quote: I heard Dr. Wormser and Steere say the same thing when referring to treating Lyme Disease for more than 4-8 weeks. Their argument rested on "It's insane to keep treating a patient beyond the recommended guidelines when multiple multicenter double blind placebo controlled trials have shown that patients with persistent symptoms (after having had Lyme Disease), don't improve with long term antibiotics. The problem is, we have quotes that say "If you don't succeed at first, try try, try again." So which is it? So, it's a bit easy to mock the fact that patients are all at different places in their exploration of treatment. People can't try every technique all at once
I see one big problem with many lyme treatments I saw from this board. -They are all mostly empirical, lets try this... then that, then this...
Compare that to CPN protocol, really clear cut, when , what dosage , for how long. Its essentially very close to Burascano guidelines(ones which apparently very few llmd follow)
There are reasons for doing what Burascano suggest , I did 3 month of research and I arrived to almost same protocol (enhanced a few points, but core idea is same - combo abx in high enough doses to be bactericidal).
Imho for chronic bacterial infection (such lyme, CPN or TB) you cannot do mono abx, you cannot do low dose, -those things breed resistance and reduce efficiency. You must use various synergistic treatments (certain supplements and drug) as alone abx are not that effective .There are chances that one single abx could be good enough -if your immune system is great and dice falls right. If it doesnt -you will likely breed resistance and are worse than before.
As an example like amoxy once a day 500 mg or so ... - with 1.5 hours HL and non bactericidal blood concentration at this does this is recipe for complete ineffectiveness and resistance build up.
Posts: 856 | From MA | Registered: Jul 2009
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seekhelp
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posted
Coltman, can you get on the phone and start telling all the LLMDs that? lol
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Well, guys. I have no idea what I am going to say Wed at my appoint now. My brain is overwhelmed.
Anyone want any messages relayed? (just kidding, of course). Posts: 847 | From upstateNY | Registered: Dec 2007
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METALLlC BLUE
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posted
quote: seekhelp Coltman, can you get on the phone and start telling all the LLMDs that? [Smile] lol
Seriously, if only they all came to a general consensus to use his tools. Dr. B's guidelines is the first place I direct patients who are looking to get informed and to start the journey with an LLMD. I tell them "It's your bible." You start with that, then individualize as necessary for your specific situation.
Following it doesn't guarantee success though, since he admits that it's an open discussion and ongoing investigation. What else can we do but experiment once we've exhausted the science and we've run out of options?
My answer: ask others if they know of any other options that you may not know of. Then you exhaust those as you're able. It will take years now to exhaust the new data presented here. That's awesome, because now I'm not stuck at a dead end. However, I'm still sick, and it still sucks, but I -- like most here -- have to keep experimenting and following what little scientific and clinical evidence is available.
When evidence runs out and clinical options also appear exhausted, you can't just go "Oh well, I guess I'll just give up." Experiment, try at random if necessary.
It's not over until my pulse stops and they can't revive me.
-------------------- 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
Frequent Contributor (5K+ posts)
Member # 15067
posted
MB, I agree having options is wonderful and experimenting when tried and true failed is absolutely necessary.
I look at like this. Dr. B is supposedly the most respected Lyme physician in the world. He treated patients the longest from what I can gather. There seem to be so many LLMDs who toss his guidelines to the side and say I can do better.
Common sense would lead one to believe anyone who subscribes to ILADS would say let's use his trials/errors/suggestions as a starting point and go from there. Unfortunately, that's far from reality. You can't 'go from there' and say OK, I'm going to use monotherapy, I'm going to cut doses down by 75%, and I'm going to ignore this/that. Now you've turned a truck into a boat.
There can be 50 reasons why the plan fails including intolerance to drugs, severe herxing, and infections/health conditions not mentioned in the guidelines. But, why not try the best practicioner's master plan first? Nearly everything in life has a best approach method. It's like re-inventing the wheel each and every time and it seems inefficient to me.
I know you've done it all. I'm making a general point as I read so many times on this forum things that grossly conflict with his guidelines, but ironically they are distributed to new members right up front. Odd.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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massman
Unregistered
posted
This says detox an infection ? "I have always advised to get the detox organs in good shape then the affected organs in better shape then attack the lyme."
That I cut + pasted from the post I composed.
I did not say anything close to detox an infection.
Will get back for other replies later. Have a web date scheduled for 3:30 with my almost 12 year old kid. She is going to teach me to do something on the web.
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Blue--
I did not read most of the above posts but-
Sounds like the only meds that helped were meds that go after Babs--
Maybe you should try the Chloroquine and Primaquine treatment -
It Helped me Greatly--
Babs is a Tuff bug and I did not get well until I treated it --
This treatment has started being used by some LLMDs-- and they are having good results --
Do a search on me #6304 and put Primaquine in the search box--
I have written Many posts about it--
From what I hear the people that have used this treatment did not have as Bad of herx as I did and had good results -- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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METALLlC BLUE
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posted
I received a reply to my letter I sent to my LLMD. My letter was posted further back in the thread on October 10, 2009 10:41 AM
" Hi Michael, Per J, The update was appreciated. If you prefer to follow up with your Primary Care Physician for treatment of tick bourne illness, that is fine. If you have any other questions or concerns, you can call the office. (Insert Phone Number)
Thank You"
Basically, what I get from his response is "Do what you've gotta do."
I can return when I need to, so doing the Levaquin trial, Malarone and following up as I learn more will help. I need time to do research, rest and figure out what other steps I might take while using the Levaquin.
-------------------- 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.
Have you even seen a LLMD yet? Your anecdotal, skimpy research may convince you, but you are no LLMD and no Dr of any kind.
You have all of 3 months of "research" and you think so much of yourself that you know better than LLMDs with real world experience treating real patients? Now you're a freaking expert?
You have barely any experience even HAVING the disease, IF you even have it. You're hardly convinced you have lyme.
Collecting info is not the same as having experience. You don't seem to understand that.
Posts: 872 | From New York City | Registered: Jun 2008
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quote:Originally posted by JamesNYC: Have you even seen a LLMD yet? Your anecdotal, skimpy research may convince you, but you are no LLMD and no Dr of any kind.
You have all of 3 months of "research" and you think so much of yourself that you know better than LLMDs with real world experience treating real patients? Now you're a freaking expert?
Certainly not . It is amazing though that in 3 month of research you can learn a lot more about the problem(and around it) than many MDs learned about it in their whole life (mainly because they do not have any stake in the subject)
Not considering myself and expert, but I do think I know the reasons behind Burascano protocol guidelines in more depth than you ever cared to know , if you can bring forth the argument why bid 500 mg amoxy is effective(or some such "abx" protocol) - I listen, just please care provide links to research papers you base your opinion on.
I'd love to hear about flaws in my "anecdotal skimpy research". - I certainly could miss or misunderstand something, after all 3 month is short time.
You on the hand behave like a troll - instead of presenting actual arguments you resort to ad hominem attacks and appeal to authority. You can stop waving your "you are not llmd flag" - you are not one either.
quote: You have barely any experience even HAVING the disease, IF you even have it. You're hardly convinced you have lyme.
Really? I think you are the one deluded here as you have no idea about my experience and length of it . And btw dont you have only 41 band positive, yet apparently you are beyond any shade of doubt.
quote: Collecting info is not the same as having experience. You don't seem to understand that.
"Having" experience is having an MD near your name and practicing for many years? Why you even here? Got to your MD ( I suggest IDSA ones - they have most impressive credentials!). Stop trolling around here then
You seem not to understand that regardless whether you have formal credentials ,regardless of how many years sitting behind the desk signing same papers and doing exact same thing it will not magically make you know more about the problem
Facts are facts.If we talk chronic lyme here - there are tens of thousands of papers on pubmed you can read. You can read about each specific abx, their mechanisms of actions, clinical trials results, specific treatments. -you seem not to understand the simple fact that regardless who prescribes the drug it works the same(whether your are "llmd" or not)
Having said all that - I do not in fact claim I know more about chronic infections than "all LLMD". I am just saying give me a good reason to why to deviate from Burascano guidelines if you treating chronic persistent infection such as BB. Not empirical and personal ones, but real facts why exactly you want drop drug or low dose it.
In fact there are papers out there suggesting that Burascano guidelines might be too conservative in some areas if we talking about treating persistent neuro infection with spirochette.
Posts: 856 | From MA | Registered: Jul 2009
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posted
MB- I never sent JF a letter stating I was trying elsewhere. I don't think he would have cared if I came back or not.
I don't even think he knows I haven't been out there since April...I probably should have just in case.
They did charge me alot of money to have all my records sent to my new doctor though.
Anyway at least he replied to you and he was always good at getting back to me everytime.
Good luck with your treatment.
I was on Levaquin for 3 months back in the summer of 07 and I had a sore throat for 10 months and the levaquin made that go away but that was about it.
Take care Kim
Posts: 343 | From North Carolina | Registered: Oct 2008
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sutherngrl
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posted
Coltman, I don't think there can be one set protocol for what we have. Just like ppl with AIDS, we have so many factors in play. There can be no one size fits all protocol. There are a million reasons why.
I have nothing against Dr B's guidelines as a place for doctors that have never done their own research to start. But my LLMD has researched LD for 30 years. Why should he need Dr B's guidelines at all? He has all the information through personal experience, through pathological and clinical experience of his own.
I don't want a one size fits all protocol myself. I want a doctor that "knows" LD. Has years of experience and uses that experience to heal me. Not a copy cat doctor that follows one mans guidelines because he has not taken the time to study patients and results himself.
Coltman, I do think you have done a lot of research, as we all have. But until you have gotten deep into treatment you are lacking the personal side of it all. There is a difference between reading, comparing and actually treating LD. Its not nearly as simple as you would hope it to be.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
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Can I use Levaquin in combination with Tetracycline?
-------------------- 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
Also, I'm still on Malarone treating the Babesia. Would Levaquin and Malarone cause a problem? My doctor had me on Factive and Malarone. Factive is in the same family as Levaquin.
-------------------- 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.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I ran Levaquin, Malarone, and Tetracycline through www.drugs.com's Interactions Checker.
Tetra/Atovaquone (in Malarone) is a moderate interaction:
"tetracycline ⇔ atovaquone
Applies to: tetracycline, Malarone (atovaquone/proguanil)
MONITOR: Concomitant treatment with tetracycline has been shown to reduce atovaquone plasma concentrations by approximately 40%. The mechanism of interaction is unknown. Therapeutic failure may result. MANAGEMENT: Clinical response to atovaquone and parasitemia should be closely monitored in patients receiving tetracycline"
So I'm thinking it's okay, because if you prefer Malarone to Mepron, it is probably the Proguanil in Malarone that is benefiting you more anyways.
Also had this to say about tetra and food:
ADJUST DOSING INTERVAL: Administration with food, particularly dairy products, significantly reduces tetracycline absorption. The calcium content of these foods forms nonabsorbable chelates with tetracycline. MANAGEMENT: Tetracycline should be administered one hour before or two hours after meals.
Then of course it says take Malarone with fatty meal....which you would especially want to do if the integrity of the atovaquone is already being compromised by the tetra.
I would check with a doctor too though. They say using Mepron will lower Levaquin's effectiveness, even if you use it later on.....so I don't know if together that effect would be worse.
That is LLMD knowledge...you'll find people talking about it on LN if you search.
Posts: 4590 | From Midwest | Registered: Jun 2008
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METALLlC BLUE
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posted
I'm reading portions of one of the books: "Insights Into Lyme Disease Treatment."
It's pure gold folks. Everything we're talking about here (much of it anyway) is talked about in that book, including dosing, combinations and the specific therapy (drugs, herbs, supplements).
I would recommend it to anyone struggling like I am.
-------------------- 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.
quote:Originally posted by sutherngrl: [QB] Coltman, I don't think there can be one set protocol for what we have. Just like ppl with AIDS, we have so many factors in play. There can be no one size fits all protocol. There are a million reasons why.
There is one for CPN (infection very similar in many ways) , people use successfully for treating MS. I don't see good reason why there is no consensus for TBD protocol.
There are many variables regarding other co-morbidities and individual patient needs true , so treatment for other conditions /approach may vary but when we talk about specifically BB I dont see a good reason why not use something with a proven base
All in all I can see why Dr's doing it (many different reasons), but I dont think they act from the point of view of most effective treatment.
quote: I have nothing against Dr B's guidelines as a place for doctors that have never done their own research to start. But my LLMD has researched LD for 30 years.
Why should he need Dr B's guidelines at all? He has all the information through personal experience, through pathological and clinical experience of his own.
Well there is extremely solid basis behind what Burascano has written in his protocol. I have read it on my first day I started researching lyme, but only now I started realise whole depth of it and why it is the way it is. Burascano doesnt describe it there in details as it is not in the scope of his guide.
But once I started researching how abx work (I researched pretty much every single group of abx and in many cases particular drugs) ,what are mechanisms of antibacterial action , abx resistance, action against specific bacteria (I researched TB,BB , syphillis, CPN) there is much more than meets the eye in the selection of drugs and dosages.
It is complex and complete system ,and I frankly don't see good reason for dramatically altering its core -as it is based on solid research. I can see several ways it could be improved and built on though.
And btw its no coincidence that CPN protocol (there are few variations but they have same core) is a mirror of Burascano, even though it is made by different doctor. There are certain things that must be covered when you treat persistent bacterial infection -and both those protocols are in consensus about this.
quote: I don't want a one size fits all protocol myself. I want a doctor that "knows" LD. Has years of experience and uses that experience to heal me. Not a copy cat doctor that follows one mans guidelines because he has not taken the time to study patients and results himself.
Well its great if you have a doctor who studied the probem in depth and arrived to effective treatment protocol. I think somebody like lymeMD guy is probably very knowledgeable and has a lot of experience (and btw he does generally uses pretty Burascano like approach)
There are many factors though why a great doc might not do best treatment for you -he has lots of other considerations . Some of them are liability and medical boards issue, some of them are because of his experience with other patients (which affects your treatment too- no matter how much in common you have or not have with them).
It is same issue as with other MDs in general -it is safer to do as little as possible, it does not pay to be aggressive in the field of managing outpatient care , specifically chronic diseases and lyme in particular.
It is a consensus among docs (yes even around LLMDs) that if you are not in danger of dying any time soon you are ok. There is approach of "minimally effective treatment" adopted so deep at the core of medical profession (and a lot of medical research field too, sadly) that I believe it produces treatments(or no treatment at all) which serves as breeding ground for chronic conditions and untreated permanently ill population
quote: But until you have gotten deep into treatment you are lacking the personal side of it all. There is a difference between reading, comparing and actually treating LD. Its not nearly as simple as you would hope it to be.
Well there is are several reasons I did not start a treatment and "not have personal side". For one I wanted complete the testing and confirm most likely cause of my problems, that was(and to some degree still is ) a research subject on its own, -there is vast array of diseases out there which have similiar clinical presentation, it did require a lot of reading and researching into them .
It also required tests to be done - that was most time consuming part as it took several appointments to cover the minimal grounds, I received my igenex results only yesterday)
Immune system is a huge topic as well - and I frankly not anywhere close to solving it , there appears no consensus about it , immune system fine works are generally still a mystery .Most of the information out there is of descriptive nature, there are very few effective methods of using it for treating disease (aside extremely crude approaches such as corticosteroids and interferons). Effectiveness of immunemodulation is mostly empirical - there is no clear understanding exactly how it is achieved .
There was also a very big question of whether the aggressive abx protocol is worth the risk vs its potential benefit ( there is an option of just correcting the damage with symptomatic treatments , which ,too, needed to be investigated).
There are many ways to screw things up and make it worse and I wanted research alternatives and option before making final decision
I want be comfortable with it - know why I am doing it, why it works and why it might not work. Several approaches were to be researched (alternative treatments salt/c ,MMS, rife) and MP (MP is in a class of its own) . ABX protocols themselves had to be researched. Lots of grounds had to be made before I could arrive at some conclusive point.
So I wanted personal element out of it. I will not be doing because somebody somewhere thinks it might work or some anecdotal evidence on the internet. Personal investment muddies the waters -once you commit to something it is harder to correct mistakes. So before commitement I want to know as much as possible
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ping
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Tetra/Atovaquone (in Malarone) is a moderate interaction:
"tetracycline ⇔ atovaquone
Applies to: tetracycline, Malarone (atovaquone/proguanil)
MONITOR: Concomitant treatment with tetracycline has been shown to reduce atovaquone plasma concentrations by approximately 40%. The mechanism of interaction is unknown. Therapeutic failure may result. MANAGEMENT: Clinical response to atovaquone and parasitemia should be closely monitored in patients receiving tetracycline"
So I'm thinking it's okay,...
I'm just now getting to read this thread...
Hoosiers - NO, it is not okay. I ran into this interaction a number of years back when using Mepron and Minocycline. Any drugs related in either "family" will have this reduction. MB - Don't waste your money with this combo. Find one that doesn't interact in this way or you'll be spinning your wheels, again. I figure you're already stressed out and depressed enough.
coltman - All are entitled to their opinions here, as am I, so I'm going to state mine. I think sutherngrl showed great charity and was accurate when she said that you "don't have the time in" to be experienced enough on a personal level to be aware of many things. (However, leave it to a New Yorker, like JamesNYC to really let it rip.) We are all well aware that you've researched your lil' heart out, but the time factor really is very, very important; eventually, you will understand this. BTW - Have you seen an LLMD yet?
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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METALLlC BLUE
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I have an interesting question. In the new book "Insights Into Lyme" I was reading a section regarding "why people don't get well."
I felt deeply unhappy (with myself) when everything that was mentioned was pretty much a perfect description of me. Only the issues weren't about the factors surrounding the disease, but rather the personalities of patients that contribute to their downfall.
People who are defined by their disease, or who are unable to "push" through the pain by going on with their life. It goes on to discuss a lot of things, but it made me feel guilt and sadness. What if I'm just weak psychologically and the reason I'm not getting well is because I'm isolated, lack spiritual direction, and all the things that were mentioned.
He goes on to say "People who spend all their time talking about Lyme and posting on the internet" are the ones who stay sick. One of the answers was that those who get caught up in the details and ask "How/Why" questions about the technical workings of treatments or of the disease don't get well.
Does anyone know what I mean? I mean, I feel that I'm held hostage by my condition. It impacts every decision I make, from how long I wait to go to the bathroom, to whether I clean the dishes in the morning.
Does this same concept apply to someone who has been sick their entire life almost? I mean, I fought for over 10 years getting up every morning while sick with this disease. I found hard, and when I was first diagnosed, I fought hard for a few years too. I found the harder I pushed, the harder the disease pushed back. It knocked me down hundreds of times (If not thousands) and as bullheaded as I was, I kept getting back up. Finally, I didn't get back up, because I realized that it was irrational and was only causing me pain to keep trying to live beyond my ability.
I'm not sure what to think. I feel guilty sometimes, for not fighting harder. I often feel depressed and don't have the energy to invest as heavily as I'd like in research. I've read almost all the studies. I've read many of the books. I take the medicines as prescribed and I try "hard" to believe in meditation (which I can't seem to do easily), and I've tried to eat right, drink tons of water and do everything I was told, but nothing actually helped (permanently). Nothing made me feel better than 50%.
I'm just not sure what else I can do.
-------------------- 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.
D Bergy
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Member # 9984
posted
I think they simply are stating that you are not going to know all of the what's and why's about the disease and the treatments. Don't get bogged down in the details, too much.
You will know when you are getting better, and why is not unimportant, but getting better is more important.
I guess that is why I am doing the research and treating for my wife. She does not know why I do what I do, and I know partly, but we have to see from results what works in the end. A theoretical cure is only that. In the end you have to do something, even if it is not 100% correct. You learn on the way.
I use the old football analogy. Keep doing what you are doing, as long as it works. When it quits working, do something else.
Dan
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D Bergy
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Some people just are much sicker than others also.
Do not take it as a personal failure. It is the nastiest disease I have dealt with and it is not easily resolved or treated much of the time.
You can improve one way or another. It just is not going to be easy or fast.
The first thing to put in your mind is that it can be done.
Dan
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sutherngrl
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Metallic, From what I can see the majority of Lyme patients are the strongest, toughest people I know. LD is such a contriversial illness, so in many ways that makes it different from many other illnesses.
We have no choice but to get consumed in research. Its our survival. We can't depend on mainstream doctors to help us, so we become consumed with LD because it seems the only way we will ever get our health back.
However, I also get what the book is saying. I have discovered that I have to take breaks from reading and talking about Lyme. I find ways to take my mind off of it, if only for a few hours a day. I also take days off from LN so I can completely clear my mind of illness. And this does aid, I believe, in healing.
I too feel that I am held hostage by this illness. It is hard to find any normalcy in this life of LD. Everything about it is bizarre!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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ping
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quote:Originally posted by METALLlC BLUE: I have an interesting question. In the new book "Insights Into Lyme" I was reading a section regarding "why people don't get well."
I felt deeply unhappy (with myself) when everything that was mentioned was pretty much a perfect description of me. Only the issues weren't about the factors surrounding the disease, but rather the personalities of patients that contribute to their downfall.
People who are defined by their disease, or who are unable to "push" through the pain by going on with their life. It goes on to discuss a lot of things, but it made me feel guilt and sadness. What if I'm just weak psychologically and the reason I'm not getting well is because I'm isolated, lack spiritual direction, and all the things that were mentioned.
He goes on to say "People who spend all their time talking about Lyme and posting on the internet" are the ones who stay sick. One of the answers was that those who get caught up in the details and ask "How/Why" questions about the technical workings of treatments or of the disease don't get well.
Does anyone know what I mean? I mean, I feel that I'm held hostage by my condition. It impacts every decision I make, from how long I wait to go to the bathroom, to whether I clean the dishes in the morning....
MB - One of my old LLMDs called it, "Caught in a Loop", with regard to how Lyme pts minds are affected. Most highly infected pts have this problem and it's almost impossible to just "snap out of it", as that book might portray. If you were someone just a couple of months into tx and complaining, then the mentality/personality aspect would fully apply to you, but, in your case, after how many, 7 or 8 years of tx, no wonder you're fit to be tied; you're exhausted! Anyone would be. I was, after 7 years of it. (Been off abx for almost 2 yrs.) As you said, the disease takes over your entire life...There's no way around it!
Does the person who wrote that book have Lyme? Or in remission from TBD? If the answer to both of those questions is "No", then, please BURN THE BOOK! I know what it's like to be isolated with no direction and stuck as a bug on fly-paper; I've been sick all my life too. Of the vast majority of my friends/acquaint., they have Lyme, or HCV, etc. and they don't and won't take near the initiative as I have and do and as you are to get well! This has been such a stunner to me. They refuse to do in depth research and endeavor to get well, instead, they call me on the phone and ask me for answers. I tell you, MB, I'm at the point of just not answering the phone anymore and wanting to start completely over again.
As for communicating on the internet to those of us who have your kind of experiences / illnesses, or to an otherwise 'healthy' person, what the heck are you going to talk about with a healthy person who has no blooming onion of an idea of what chronic illness is like? And can you do the things / keep up with someone who's healthy? NO! I highly suspect this book was written by a relatively healthy person who can do as he or she likes. MB - YOU'RE NOT ABNORMAL FOR YOUR SITUATION! If the author were ever in your situation, they'd feel the same way, okay!
If you want all this to stop, the number one thing to do is to explore and actually take avenues to get well, which I think you are doing. I also think you're what we call in Texas, "dog tired" at the moment and on a guilt trip for being sick. Please, please, for you and all of us 'friends of you' here, the first thing you can do is to stop reading the freekin' book!!!!!
I work a 40 hour a week job; blessed to have it, absolutely hate the type of work, many of the people and at this point, I've learned to accept it. Meanwhile, as my TBD has abated, I've enrolled in Beginning Ballroom Dancing one hour per week (I used to be well-advanced) and am learning about investing money (as if I really had any money...I have this old, rich auntie who could kick-off any time and I need to be ready. Don't know how much she's going to leave me though...No, really, I'm serious.) Do as much forward-thinking as you possibly can. You might only be able to pick one thing to focus on and that's all you need. (Remember what Billy Crystal said in City Slickers?) Just that one thing, for now. Doesn't have to be that one thing the rest of your life, just for the time-being. This is all you can do for now, MB.
You can't think your way out of this illness and I'm so damned sick and tired of hearing this crap from everyone. It's another spin-off on the, "it's all in your head" doctrine. It's the toughest kind of ridicule people like us have to deal with; which is not being believed. Here's the catch for "the others" though, MB.... Everyone is going to get their turn! I can almost guarantee it! Less than 5% of the people on this planet die quickly (in their sleep, or drop dead, etc.). Most contract some type of infirmity and suffer slowly until it's done. What I'm saying isn't cruel, it's just a reminder to myself that some day, they will know what it's like and I don't have to explain anymore. Over time, my explanations to people have become less and less, due to this realization.
So, aside from posting here in Questions so you can find a tx combo that helps you, please go over in Off Topic and post something completely unrelated, as if you were well and wanted to do something, travel somewhere, whatever. I know it's difficult, but FORCE YOURSELF! Just one thing. I'll post to your thread and I'm sure others will join in.
AND STOP READING THAT G - DAMNED BOOK!
ping "We are more than containers for Lyme"
[ 10-14-2009, 04:38 PM: Message edited by: ping ]
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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METALLlC BLUE
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posted
Thanks for the commentary on the book. I still am not entirely sure how I feel about what I read. I re-read the material to my girlfriend (who also has this illness) and she seemed to feel that what the doctor was saying is relevant but not in a personal way. I felt that she was saying what sutherngrl and ping were saying about "being stuck."
I still feel ambivalent. I personally feel that I'm so burned out and "dog tired" as ping said, that it's easy for me to feel guilty about suddenly slowing way down and feeling this almost quiet despondent acceptance shadowing over me. It's one thing to accept your present circumstances (which everyone tells us we should do), but at the same time never accepting the situation as permanent and irreversible. I just don't want to fall into that trap. Many here have said "I keep fighting and pushing myself, even when it hurts -- through the pain and exhaustion, because I know if I stop, I'll just die." Is that me?
I feel like I'm slowly giving up. The reality is that I am most certainly discouraged and my faith has taken a devastating blow the last year or so. I moved into a very (seemingly) rationale perspective of the world. I went from a devote spiritual person practicing many faiths (Mostly Christian at the time), to "It's a fanciful illusion to think any outside forces other than mere probability were dictating my life, and thus meditation and prayer became unmotivated processes. It was as though I couldn't find the will to connect since I felt there was nothing to connect to. I stopped trying to live for something more.
This isolated feeling has certainly played a role in increasing depression, isolation and the decreasing ambition to "push" for a future beyond living to work, buy a house and live the life that most people take for granted. It was as though my dreams and ideas about idealism died too.
This isn't my fault though -- not a personal shortcoming anyway, I've tried very hard to take advice, and to do what I thought were the right things. I tried to be faithful and to maintain whatever stability I could.
I feel as though I am really stuck, but......... I just don't think I'm the type of patient who doesn't get well because of how stuck I feel "now". It's true I've worked with the wrong doctors and that while people were encouraging me to move on, I dragged my feet because of trust issues. The doctor kept telling me "Everything will be just fine, keep going, it takes time". 5 years later I was still sick!
It's true I had all the same difficulties that many patients have, and that I am obsessively ambitious about keeping my doctors updated, and recording symptoms, my lifestyle changes, diet and other issues, but it's all waning now.
Yet, the "treatment fatigue" is also true -- I've invested myself fully in recovery only to see a gradual eroding of that fire within.
People have told me for a long time to never let that fire burn out. They said, you've got to stay bright and ferocious and keep fighting. I think I've done that to the best of my abilities, but I'm just not sure anymore what I'm fighting for?
Am I fighting for the sake of proving a point? Am I fighting so I can move on with my life and forget about everyone else who is struggling? Am I complacent and tired?
There is a song that comes to mind that goes:
When all I have is on the floor divided And I'm a world away from peace Behind your eyes is where I know I'll find it Who you are defines my dreams? You already take me there.
Well I'm a broken hearted man, complacent and tired I've been knocked out of the ring I've played the fool for long enough to fight it It's in your arms I find my place.
This song is a spiritual one. The person is basically talking about external and internal struggles we all go through in our lives, but also knowing they have a rock or anchor in God to hold onto. I just don't have that anymore.
I love my family, girlfriend, friends and certainly myself -- that's why I'm trying to find answers in this post. I'm just so tired.
I've even grown to tired to edit my post, so if some of it is rambling and confusion, ....sorry.
-------------------- 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.
Vermont_Lymie
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Member # 9780
posted
MB,
Wow, just read your post above -- what a moving spiritual song.
Sorry that you are so tired. Hope that we can all take that load from your shoulders for a few minutes so that you can rest.
I have always said that TBD treatment is a leap of faith, 'cause it takes so long to see best results. Rest and then come back to it when you can.
On a practical note, I wanted to ask:
Have you ever tried the Buhner core protocol herbs with antibiotics?
The cephalosporins (oral) have gotten me better, but adding andrographis, resveratrol, and cats claw clearly improved the efficacy of antibiotic treatment, for me.
The best protocols are ones with multiple abx/herbs at the same time, though the herxing can be rough at first.
[ 10-14-2009, 08:11 PM: Message edited by: Vermont_Lymie ]
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seekhelp
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Ping, that was quite a post. Wow, I agree. MB, I wish I had better words to say, but I just wanted to commend you on your efforts to date. You seem like one dedicated person. Don't kick yourself please.
Unfortunately most people are too ignorant to understand. I, like you, will not accept this as my new life. If I were you, and I'm not, I would do rife. Go outside the box. This is if you see no improvement with your Bartonella Tx.
I'd have no reservations about out of the box treatment protocols after 7 years. Hell, I'd strongly consider Germany. Just the fees from your current doc probably run up eventually to that point. Go down fighting. Yeah, stop to pick up new weapons occasionally, but keep fighting.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I haven't read all of the posts in this thread, or the book Insights Into Lyme (I will- hubby owns a bookstore), but I just wanted to share my experience:
When I was sick I ate, breathed and slept lyme. My family thought I was crazy. I spent every minute I could reading and researching. I started a lyme support group in my county. I was online contantly, lurking more than posting. I was CONSUMED. I was taking dozens of pills per day. I tried many combos (not as many as you).
My husband finally told me that he couldn't stand talking to me, he'd come home from work and I'd start talking about lyme. I told him, "Researching Lyme Disease is my FULL TIME JOB." I had my life taken from me and I HAD to figure it out.
I think I did figure it out. I was on abx (oral and IV), I did herbs, I bought a rife machine (and used it-still do). I am better. I've been off abx since August 18th and so far, so good. I can DRIVE! I am working full-time. I can parent.
I am not as crazy about researching lyme and every co-infection. But I still check in on lymenet, I still run a support group, I still try to raise awareness everywhere.
My point is this- they told me it was all in my head, that I was obsessed, that I enjoyed being sick, that it was psychological, blah, blah, blah, but now that I'm better, no one says that. They say "wow, you did a lot of research and really pursued aggressive and alternative treatments, no wonder you are better and my (friend, neighbor, relative) isn't."
If you are really sick, spending your time researching and learning and trying to get well is a sign that you are NOT crazy. You are trying to get better and it may be easy for people who don't know illness they way we do to say that you're stuck and that it's a personality thing keeping you from getting better, but if that's true, what changed in my personality after 2 years?
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METALLlC BLUE
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Guys, thanks so much for standing by me and saying this stuff to me. I really think you guys are helping me a lot here.
I suppose I doubt myself and feel a lot of these things because -- ....anyone in my (our) situation would.
I'm going to follow thru on the Bartonella treatment. My girlfriend told me she also would like to see me go to Germany, but the time frame isn't right. She's going to Germany in November and her family is paying for the necessities. I know they want me to go so I could save all that money and just pay for the medical care.
I wish I could do it, but the time just isn't there, especially with how I'm feeling. I am considering it seriously though, but I think if I have to pay, I'll pay later.
She also feels this is best, and she told me the Bartonella treatment I'm considering is good. She said "Keep it simple" -- just do the Levaquin, Magnesium, Malarone and that's it for the "core" direct treatment. Obviously supportive aspects, like probiotics and my "symptom" reducing meds, like Nystatin, Welbutrin and such will continue.
I feel this is the best direction right now too.
I said this to my girlfriend early this morning:
[08:28] MB58SC: I really am just super tired, and I think when I'm mentally able the motivation and hope will turn back on.
[08:29] MB58SC: I think when you've been screwed for so long and stuck after trying so hard so many times, you just get knocked down and stay down for a bit longer each time.
[08:29] MB58SC: But, if you're tough -- like Rocky tough -- you'll get back up, even if you lose some fights.
[08:29] MB58SC: It just will take "longer" to get up this time.
So, I think that's the bottom line. I'm afraid of not getting back up, but it's not in my nature inherently to stay down permanently -- but even iron can be bent and broken, so if I stay down longer, I don't have to feel guilty knowing it won't last.
If someone else stays down, who am I to judge? They have their reasons. Maybe they were knocked down and finally knocked out. We're not unbreakable -- but... I'm not broken yet.
-------------------- 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.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Hi Mike,
I strongly disagree with what was written in that book and when I read stuff like that it really angers me. What choice do we have other than to stay connected with other folks who have Lyme and research and learn? Only those who suffer with this illness can truly understand the depths of loneliness and despair it can bring.
Even with the best LLMD's we have to educate ourselves about his illness and stay up on research. It would be a great luxury if circumstances were such that we did not have to but we do.
I think you are doing and have been doing a great job at trying your best to feel better. There are times when this illness may temporarily beat us back a bit and we need to take a mental break and regroup but in reading what you have written and corresponding with you there is no doubt in my mind that you are handling this just the way you should be and with courage and strength.
These feelings of guilt are normal, but they are just passing phases. It sounds to me like you have a plan and I truly hope it brings you some improvement.
If it does not, I am 100% sure you will find another approach as there is one thing I have learned is that there are always options even when we think we have exhausted them.
Hang in there. You are to be commended for being such a fighter and such an excellent thinker and researcher and also for personally contributing so much to this site.
Better days are in store for you.....I know you will never give up! It's not an option and we won't let you Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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ping
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quote:Originally posted by catskillmamala: My point is this- they told me it was all in my head, that I was obsessed, that I enjoyed being sick, that it was psychological, blah, blah, blah, but now that I'm better, no one says that. They say "wow, you did a lot of research and really pursued aggressive and alternative treatments, no wonder you are better and my (friend, neighbor, relative) isn't."
If you are really sick, spending your time researching and learning and trying to get well is a sign that you are NOT crazy. You are trying to get better and it may be easy for people who don't know illness they way we do to say that you're stuck and that it's a personality thing keeping you from getting better, but if that's true, what changed in my personality after 2 years?
Yes, Yes, YES!!!! Absolutely / Precisely! They are NOT the one's who are ill! They don't understand!....Yet...(Remember, everybody will get their turn. No one gets out of life alive.)
Bravo to Abxnomore and others as well.
MB - Try to rest. I know letting go for a while (not forever) is difficult, but you're obviously exhausted. STOP READING THAT BLASTED BOOK!
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
Hey ping, for some strange reason I get the impression you'd maybe like MB to stop reading the book?
I don't know...I could be wrong though.
Posts: 423 | From Upstate NY | Registered: May 2009
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D Bergy
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posted
I have been doing a little experimenting with the XMRV virus, using frequencies.
The treatment produced no reaction at lower Hz frequencies. When I converted the frequencies to the Mhz range the frequencies made me itch, and my Terminal Ilium got sore with the first four frequencies.
The Terminal Ilium is one area where my Crohn's has been active in the past.
Since this area is probably sensitive already, the results are inconclusive. It could be that any high frequency would irritate the area, or it could be that the specific frequencies actually were hitting something.
I am going to do this for a few more days and see if I can determine anything more concrete.
This is an interesting virus, that has the potential to cause many conditions. It is all speculation at this point.
Dan
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Lymeorsomething
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I can't be certain but I really think Levaquin helped me. It gave me a sore achilles' tendon on one heel during treatment but I did notice some improvement after finishing a course. You just have to watch and not push too hard with the exercise while on it. If you think it helped, it may be worth another course.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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TerryK
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posted
Sorry you feel discouraged Mike. It would be a miracle if we didn't get discouraged at times.
I've had doctors (not LLMD) ask me when I'll give up looking for answers. My response is NEVER!!! It's not in my nature to give up.
You seem to be cut of similar cloth. You may need a rest now and again but I don't see you ever giving up. Just the fact that you posted this thread indicates that you are continuing to look at your options.
I often hear doctors blame the patient for not getting well under their care. I will objectively (to the best of my ability) entertain any and all reasons that a doctor *thinks* might be hindering healing and address the issues if I feel they are part of my problem but I am not willing to blame myself for not getting well.
I followed the treatment protocol of one doctor for over a year and I did have improvement but didn't get well. Later I got my medical records from her office and read in her chart notes "Why won't Terry let herself get well." She was assuming that her treatmet for yeast should have gotten me all well. I was never treated for infections of any kind (besides candida) and I have many that I had for decades by the time I got to her.
The reasons patients don't get well is because they have not received the right treatments for their condition. Genetic issues, lifestyle issues (the right food etc.), and yes emotional issues are all part of it but most importantly is finding the right treatment for the underlying causes.
The only way to find all the issues is to keep looking. I commend anyone who continues to empower themselves by educating themselves and looking for answers. Many of us would not be here today if we were not the "personality" types that we are. I embrace it!!! I appreciate it!!! And yes, I try to strike a balance.
Appreciate yourself for your many positive personaly traits and your considerable talents. Work on those things that you feel might be hindering you but try to NEVER blame yourself for being sick. Borrelia and other infections are why you are sick.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
The key is balance. Too much focus on Lyme, and one can't "see the forest for the trees". Mental health is negatively affected.
But too little focus on Lyme, and one doesn't do enough to get well and may even be out and about staying up late, eating crap food, and asking to just get worse and worse.
Balance.
Posts: 641 | From Nevada | Registered: May 2009
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quote:Originally posted by tosho: MB, you mean this Bionic thing ? That's the last thing I would consider to do. I read somewhere here that people paid ca. 8000$ for this machine. I am afraid the actual cost of the machine construction is just a tiny part of this price, the rest goes straight to sellers' pocket. The statement of this dr. in Germany that says you are Lyme free after Bionic course is a pure lie in my opinion.
Quite honestly, I don't care if it cost them one penny to make the machine and the rest was profit, I'm 100% well and the person who made the machine earned their pay!!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I think I both agree and disagree with the comments about getting well. I personally NEEDED the people on Lymenet to tell me it's all going to be okay and to tell me what I was feeling was normal. Lyme is very lonely and I needed the camaraderie of Lymenet.
On the other hand, I think you have to have a positive outlook to get better. I always knew I'd get better. I never questioned it. I admitted when I felt bad and rested (no, I think not pushing through is sometimes the best option), yet, I did not admit defeat.
I did own my disease. I owned it, it did not own me. I am a Lyme survivor, just like there are cancer survivors. I had to accept it and take ownership of it to admit I needed to fight it. That's how my mind works. I am better, yet I am still here posting as I can to give back.
For a while, yeah, I was pretty much defined by my disease. I was totally disabled, how could I not be?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
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posted
Metallic, for what it's worth, that comment that the LLMD made in the book really ****es me off. He made this exact comment to me when I started getting sicker on his protocol......it felt like a way to put the responsibility on me. Because I didn't have the right attitude? I never (or rarely) questioned his decisions, just brought some ideas to the table. But because I declined, it was apparently my fault.
Please don't take that comment in the book to heart. I haven't given up and I don't expect that you will either. I am pursuing some lines of treatment that I never in a million years would have considered because guess what? I'm not giving up.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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I think what TerryK said about the immune system is key.
I am just now learning about all this stuff. I am working with an LLMD who knows it and believes the key is to "rev up" the immune system to kill the bugs and then pulse therapy until the immune system comes back online. I believe the words he uses are "immune reactivity" vs "immune containment". As therapy progresses, he looks for immune containment.
I am definitely in "revved up" and reactive mode right now, which is not a nice place. But I look forward to my immune system coming back online...I honestly think that is why my treatment to date hasn't worked. I don't even think Lyme is really a problem, it's this BLO thing that is causing the problem. In a body that has 500 trillion organisms in it, why should this one thing be able to cause so many problems?
What I have learned: some Lyme patients seem to treat, herx, and then get better. Neat as pie! An immunologist I saw last week said "if you treat an infection with the right abx, you get better. If not, something else may be going on, like an immune problem". In my case, I'm pretty sure it's my immune system. So I'll need that corrected. It hasn't happened for me by constant use of abx, no breaks. Hoping the new direction will work.
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METALLlC BLUE
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posted
Ok, let's all run an update! Those who have seen their doctor since originally writing here, please tell me what you've learned.
I've now done this protocol for one month:
Malarone 100/250mg x 2, Lamictal 200mg x 2, Ativan 2mg x 1, Pentasa 1g x 2, Wellbutrin 200mg x 1, NSI Magnesium 300mg x 2, Levaquin 500mg x 1, Nystatin 500,000U, Saccharomycin DF 2 caps, VSL #3 Capsule x 1. Armor Thyroid 60mg x 1
The only two things that are "new" for that 1 month however, was the Levaquin and Magnesium. Little progress has been seen - if any. Some sore achilies heal and tenderness was felt, but is generally harmless and has alleviated. Insomnia worsened temporarily but has improved somewhat. Last night I slept the entire night without waking, which is rare -- however, I also dreamed that my father died and I experienced intense grief. When I woke up, I was so shaken that I wanted to call my father.
I "did" sleep the whole night though! I doubt this is progress from treatment though.
Did most people who achieved success with Levaquin not see results early on (1 - 2 months?)
I see the PA of my LLMD's office on Novemeber 19th (Next Thursday). She and I have a much better relationship then I have with the N.P. or the main LLMD She will surely help answer my questions.
In my next post I need a little help. I'm posting the update I'm writing for the PA and would like others to review what I'm going to be saying.
[ 11-22-2009, 01:23 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Here is the written portion I need reviewed. If I've left anything out, please let me know.
Special Note: I saw you last on [04-28-09]. ``Since my last appointment with the N.P. and my primary LLMD, they discontinued just about all aspects of treatment. I expressed that I was burned out and was ambivalent and anxious about going to IV therapy. I was concerned that I might put so much effort into getting the port and treatment and still probably relapse in the end. Obviously, I had treatment fatigue. I took a much needed a break and wrote JF to inform him. I do not and still do not think IV Doxycycline or IV Rocephin is the right drug choices based on my history - at least at the moment. Given my reactivity to Tetracycline, I could see perhaps using IV Tetracycline or Tigracycline, along with Tindamax, and or considering IV Levaquin (possibly). My goal presently is to move from a 35-40% plateau to at least 50-55%. We know I have no allergy to Levaquin or the Cycline family thus far, having used Doxycycline, Tetracycline and Minocycline orally. Yet, it is only Tetracycline, which seems to maintain the plateau. I can return to Dorxy to see if a positive result happens again however, given the drug seemed to fail after an intense activity induced relapse. I've never used Oral Tindimax. I have used oral Flagyl and oral Cipro a long time ago but the dosing was small and for unrelated issues. It was not combined correctly with any particular drug combination. IV Flagyl (If the IV were used), could potentially be valuable as well as an oral preparation before considering IV.
It is my opinion, having treated my Lyme disease for 8 years now, that the primary problem is still likely the co-infections. The drugs we used would have targeted Mycoplasma Pneumoniae, Rocky Mountain Spotted Fever, Chlamydia pneumoniae, Stachybotrys Chartarum, and the other infections found, but progress would not occur with Lyme disease, as we know if the major underlying co-infection isn't hit with the right combination. I believe we need to hit the co-infections harder, especially the Babesia. We know it's responding well to Malarone. Why Malarone? Moreover, why is the response to Mepron weak? Could it be the time frame? I used Mepron for 4 months at 2 tsp x 2. Perhaps the duration wasn't long enough - or perhaps it paved the way for Malarone? Alternatively, perhaps the proguanil is responsible. Given proguanil's propensity to expand Atovaquone's properties, what would the outcome be if we used Malarone ``with'' Mepron (assuming proguanil still isn't available as a preparation on its own?)
Expanding treatment to include (or rotate since some are in the same family) perhaps Artesunate, Pyrimethamine, Clindaymycin, Quinine, Lariam, Chloroquine, Chloroquine Ivermectin could be options. IV therapies for Babesia were also suggested. In the past, I did dismiss Tindimax in favor of GSE, and I entirely declined Lariam. Perhaps even including Sulfadiazine or another drug in that family is possible, as long as it doesn't create a reaction like Bactrim. I do believe an oral trial of Levaquin of a three-month time frame is warranted. I began this therapy independently. Results so far have been increased symptoms, minor response in improved sleep, though it is hard to differentiate whether lack of treatment for Lyme Disease is resulting in a backslide - the seasons interference (or perhaps both plus other factors). Additional therapies for Bartonella may be useful in my opinion, though I'm uncertain why a bigger response isn't present so far. Perhaps duration, or....the Lyme and Babesia are the primary contributors to symptoms instead. While I had a poor response to Rifampin with increased liver enzymes, there are multiple reports of ``single'' episode events that do not reoccur when the drug is reintroduced later. My increase was seen in one day, and this could have been due to combination therapy. When Rifampin was introduced again, I retested to see if the response was present. It did not produce increase liver enzymes. Possibilities? Unknown. Careful monitoring over a course of twice per week initially could result in opening a prior door that we thought should be closed.
Naltrexone is another potential door that could be opened in-spite of past reactions. Perhaps even a lower dose would be appropriate rather than starting immediately at 2mg. I've heard reports of patients responding to drugs they previously did not respond to because of including LDN. High dose Amoxicillin has worked for some patients who did not respond to Bicillin - a possibility. Returning to Biaxen in an appropriate combination, rather than just Biaxen/Plaquenil alone, may make a difference. Another potential contributor is Parasites. I've purchased 30 days of Humaworm, though I have not used it. Dr. Natura was recommended as well. Perhaps pyrroluria, High Homocysteine, biofilms, or hypercoagulation is contributing to my situation? A patient mentioned this, while others mentioned Bionic 880 therapy and the KPU protocol. Hyperbaric Oxygen was highly recommended. IVIG was suggested, though I'm uncertain this is optimal in my case and could induce severe side effects. Immune modulators besides LDN were also mentioned, such as cycloferon, polyoxidoniy ,licopid, though I know nothing about these. Another Transfer Factor treatment could be potentially useful - with the appropriate brand. Perhaps a cytokine profile is useful? I still have my EMEM3D2 Rife Machine that I am very seriously interested in pursuing, though I know the stance of your office on its sparse effectiveness. I will eventually pursue it regardless, as almost every patient I've spoken to who stuck with it beyond 6 months are seeing positive long term results if the therapy is done ``slowly and consistently.''
Additional ideas offered to me were muscle testing. I know nothing about this. Modulating the production of ATP via mitochondria function was mentioned to me. Apparently, a product called Paw Paw Cell Reg was used to do so. Someone mentioned IV Avolox, but I have no idea what this is. It was apparently a patient who had been seen in your office. Another person suggested IV Gentamicin, Roxithromycin. Then neurotransmitter testing was also suggested. Someone mentioned the possibility of a virus called XMRV, which I know nothing about; Additional herbs mentioned were andrographis, and resveratrol.
**edited to remove doctor's name**
[ 11-22-2009, 01:24 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.
posted
This is a lot to comprehend! You are so thorough and seem to have a good handle on it all.
If you don't mind my asking, was it your doctors decision for you to stop almost all treatment in April or your own? Did your symptoms worsen quickly after discontinuing treatment?
Good luck at you appointment and hopefully you'll get on the right track. I would definitely bring this report with you but put it in their hands to figure out.
Also, what did you mean by "the seasons interference"?
Take Care!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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seekhelp
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posted
MB, has a doctor(s) ever said you are too intelligent and articulate in writing to be so sick? I wonder if your thoroughness backfires? I think you do a great job with everything and am very impressed. I can see docs manipulating your abilities though. I hope you get some good direction moving forward.
I always struggle with how to present myself to docs. It can always go either way. Your research is so thorough it's like you're in the doc's seat at times!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Wow you are amazing to have even continued with all of this. Bless you. One thought though is have you been checked for genetic detox issues. People like me cannot detox these pathogen due to genetic detox issues. Dr. Klinghardt's site has a huge article on KPU therapy. Vitamin Diagnostics Methylation Pathways test can show which pathways are not working. There is a protocol that can open these up.
Also , as stated atthe latest ILADS conference Biofilms are not allowing all these ABXs to penetrate the pathogens. Are you on any systemic enzymes such as Lumbrokinase, Serrapeptase, Wobenzyme, Rechts-Regulat, Nattokinese to break up the biofilms? This is so important.
Also by looking at some of your allergic reactions to certain classes of meds it looks like you may have a genetic block in liver enzymes. Especially the sulfur drugs.The Vitamin Diagnostic test would show your doc this.
As to LDN. The latest research by the doc who founded this says now whatever dose helps each person is that person's dose. I can only tolerate 1-2mg and then I have horrible symptoms ( not a herx either). So I stay there and it helps everything. Ms patients are told to not go above 3 mg. I have mine compounded in a liquid with no perservatives by McGuff's pharmacy in Calif. I started at .5ml. It took along time for me to get to 2mg/ml. So that is a thought too. Hope this helps.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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METALLlC BLUE
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Member # 6628
posted
quote: This is a lot to comprehend! You are so thorough and seem to have a good handle on it all.
If you don't mind my asking, was it your doctors decision for you to stop almost all treatment in April or your own? Did your symptoms worsen quickly after discontinuing treatment?
Good luck at you appointment and hopefully you'll get on the right track. I would definitely bring this report with you but put it in their hands to figure out.
Also, what did you mean by "the seasons interference"?
Take Care!
It was my choice to terminate most of my treatment in September. I had treatment fatigue basically. I'd had enough and just needed to take a break. I did worsen gradually. The seasons have consistently worsened my condition, primarily Fall and Spring. At that time of the year I also get "worse."
quote: MB, has a doctor(s) ever said you are too intelligent and articulate in writing to be so sick? I wonder if your thoroughness backfires? I think you do a great job with everything and am very impressed. I can see docs manipulating your abilities though. I hope you get some good direction moving forward.
I always struggle with how to present myself to docs. It can always go either way. Your research is so thorough it's like you're in the doc's seat at times!
I do get strange looks from my Lyme Specialist(s) sometimes, as well as other doctors I've seen. They asked me "How can you complain about cognitive problems when you're able to present documentation like this? None of my patients do this."
My response is, if you had hours and hours to gradually put together something on paper, then you could do it too if your life was on the line.
I keep tedious notes (since I can't remember) and then take those notes and condense them for the appointment. I also tape record my doctors appointments.
For some reason my ability to "think about words" was not affected by my illness, yet everything else is impaired. My memory, my ability to visualize something in my head, my speech, my psychiatric behavior and feelings, vision, and hearing are all impaired in various ways. Ask me to do some simple Math, then you'll really see the problem.
I'm just incredibly diligent because everyone else failed (s) to be. I mean seriously, I've seen over 150 doctors since I was a child, and it took nearly 2 decades to diagnose me? It took being at death's door before I was fortunate to find a specialist who knew how to at least get me started on the path to recovery.
If a physician thinks I'm too intelligent to be sick, then they're obviously too stupid for me to employ.
-------------------- 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
quote: Wow you are amazing to have even continued with all of this. Bless you. One thought though is have you been checked for genetic detox issues. People like me cannot detox these pathogen due to genetic detox issues. Dr. Klinghardt's site has a huge article on KPU therapy. Vitamin Diagnostics Methylation Pathways test can show which pathways are not working. There is a protocol that can open these up. Also , as stated atthe latest ILADS conference Biofilms are not allowing all these ABXs to penetrate the pathogens. Are you on any systemic enzymes such as Lumbrokinase, Serrapeptase, Wobenzyme, Rechts-Regulat, Nattokinese ? to break up the biofilms? This is so important. Also by looking at some of your allergic reactions to certain classes of meds it looks like you may have a genetic block in liver enzymes. The Vitamin Diagnostic test would show your doc this. Hope this helps.
Thanks for the additional information. In my latest update to the doctor I mentioned KPU and other conditions associated. I also mentioned biofilms. I'll include the enzymes you've mentioned and the other suggestions. I've not been tested extensively for any of the things you brought up.
-------------------- 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, 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
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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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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
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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: 3771 | 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.
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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