posted
Note - I've edited this thread because I have just turned a major corner, after 2 years of treatment! (Hope it lasts).
The post below (and very helpful replies), were from right before this happened, when I was in the middle of a bad herx:
Check my last post on pg2 for latest update:
Sorry to post such a bummer... but I thought I should share... for anyone new to Lyme - note: I have been told that my experience is NOT usual for Lyme.
Well, I just had a heart to heart with my LLMD, and he is a good LLMD, one of the best, by all reports.
He agreed with me that my case is simply not going in the right direction, and that he is stumped.
After nearly 3 years of orals, and two attempts at IV, I am simply getting worse, not better.
My LLMD says that my progression, or lack thereof, is pretty unusual, and he's had thousands of patients.
He agrees that I've been seen by the best (I was even fortunate enough to get treated by THE Dr. B. before he retired), I've had all the best treatments, Mepron and Zith, 6 months of Bicillin shots, IV Rocephin, Levaquin, Mino and Plaquenil etc. etc. and they have not worked.
I've also tried, although did not stick with, most of the usual suspects in terms of alternatives, did the Buhner herbs, the Cowden protocol, a 5 or so months of salt and c (which I found to be really helpful at first, and then stopped working).
My symptoms are now pretty much worse than when I began treatment for Lyme. Insomnia is through the roof, brain fog increased, anxiety higher, I have new pain in my left leg that I never had before treatment, and I am now pretty much home-bound.
I don't mean to say it all gloom and doom. I actually do really well when I can get intensive exercise (which I can't with my current PICC line in) and if I eat incredibly carefully. So I can get this disease somewhat under control with tremendous effort.
My last attempt at IV, with doxy, was disastrous. Every infusion made my sx worse and worse and worse until by week 3 I was absolutely suicidal from pain and anxiety. I had to stop, and when I did, I remained at a somewhat lower level than when I started.
Well. My LLMD and I are stumped. I am being checked for other abdominal issues, since I have tremendous pain in my left gut, right under my left ribcage, which gets worse with every dose of abx. I take.
But basically, it's not working for me. There's no doubt I have Lyme, I had the classic symptoms, including the swollen knee and the exposure on Long Island and history of several tick bites. I test positive for co-infections. But is there something else going on?
What's really weird is that there were a few times on abx, that lasted literally for only a few hours, where I felt fantastic. Like a door had just opened, but then it would disappear and I would go downhill.
Anyway, I don't mean to be a downer, and I know people often take more than 3 years on abx, but to be worse after 3 years of them is not a good sign.
I still have my PICC line in, and I've been told to reduce my dose of doxy drastically, but it's just making me crazy even on a low dose.
So I thought I would post, in case someone had some ideas, and just so it would be out there.
Again, as a caution to new readers, my LLMD tells me my case is NOT usual, and in his experience, most people get relief, if not remission, with abx. He says the problems is usually getting people OFF abx. He tells me he's seen a few cases like mine, but it is def. not normal.
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
i'm so bummed for you. Wish I had ideas of what may help. I don't know enough of Rife, and am just reading the Buhner book. I'm not very knowledgable on herbal protacols either.
I'm sure someone will come through with advise.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Sorry things aren't going well. I'd probably turn to ART if things weren't working out. I don't know a lot about it, but it seems that it might help pinpoint where the problems are and what they are.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
BB,
I'm so sorry to hear what you've been through. I am going not share some ideas with you. It's a mix of things I've done, and things I've heard of others doing, when treatment isn't working.
I guess I'm hoping you haven't tried it all, so that there are some options.
1. Heavy metals testing.
2. Going off abx and aggressively treating yeast. I would recommend getting the Yeast Connection by William Crook and following both his diet and supplement recommendations, along with an antifungal like diflucan.
3. Going off abx and boosting your system. Perhaps your adrenals need to be boosted. Or perhaps your autonomic nervous system is malfunctioning. Taking supplements targeted at my autonomic nervous system have really made a difference for me.
4. Checking your home for mold or other toxic exposure.
It's possible that the Lyme has just overloaded your system, and what you need to do now is boost that system so it is strong enough to treat the Lyme with abx.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
My guess is that you have become overloaded with toxins that your body is having trouble flushing.
The pain in your left gut could be spleen.
I have been helped with draining the spleen by a good massage therapist.
If spleen is affected, you may also need manual lymph drainage, along with the detox products that help eliminate toxins.
In addition, it sounds like your adrenals may be fatigued. Have you done a saliva test for adrenal function?
Some cortisol or other hormone replacement may possibly give you the boost you need to get past your plateau.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
I don't know what to say other than I've heard some testimonies of it being darkest before dawn. Some feel the absolute worst right before things get better.
What have you done to find out about the pain in your upper left side?
Did any abx or combo or alternative stuff work at all for any length of time? If so, could you revisit that?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
After 3 years I would think you should be showing some signs of improvement. Did you see my post on "So you say you aren't getting well"? Also, the one on how Lyme evades the immune system, and the quick fix.
I didn't see any mention of treating hypercoagulation above. You could have your self tranfused entirely with abx, but if everything is gummed up with fibrin, the abx can not reach deep into your tissues. The tiny little capillaries can be completely clogged shut.
Sounds like maybe you might want to talk to your doc about getting out the big guns and go straight to the heparin. There are so many pluses to heparin beyond removing the fibrin. A research study has shown it to also clear Babesia all on it's own.
Also, are you sleeping? I believe sleep to be crucial in getting all of this under control. You may be sleeping all day like I was, but problem was really, no restorative sleep. If you are not deep sleeping your body CAN NOT HEAL. I never dreamed I had a sleep problem, and sleep issues are major with Lyme disease. You need something to push you into stage 4, deep, healing sleep.
I am sorry that all has not turned out peachy for you. You sound very toxic, and in my past experience Doxy just about killed me, and that was orally. The heparin has helped me gain about 85-90% remission for many years WITHOUT massive abx.
I think the heparin makes it possible for my own immune system to see, identify and destroy the microbes. I am so grateful that I have not had to "so far" take massive abx. Heparin is something our bodies naturally already produce.
You may not think I am as sick as you then, but don't think that, I was standing on deaths door in my late 30s from being so toxic from this illness alone. I looked like death. I am almost 51 and look better then I ever did for most of my life.
I hope you find something, don't give up. If you have not tried these things,,,,,,well, what have you got to loose?
Posts: 1251 | From california | Registered: Apr 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I would keep bringing this to the top, and someone may come along and say they have been where YOU Have been.
I bet, someone will come along and tell you they have been where you have been, and then tell you what they did to get better.
I believe there may very well be a solution to what is going on with you, just keep checking this post, and keep searching the archives for what is going on with you.
Keep looking,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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TerryK
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posted
I haven't been where you have been but after 1 1/2 years on abx, I have small improvements. I agree with checking the other things that have been mentioned. I vote for toxicity. I'd check into cholestyramine. Even if you got rid of the infections, if you can't get rid of the biotoxins, you will not feel better.
I do think I'd be looking at viruses at this point. That can also be a big issue in lyme.
I really hope that you get some answers soon. I would definately check with ART or muscle testing by someone with a good reputation for accuracy to see if something can be pinpointed to help you get better.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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luvs2ride
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Member # 8090
posted
if I eat incredibly carefully
This statement is true for me as well and I believe it is a key to your problem. I had Leaky Gut Syndrome, Helicobactor Pylori (bacteria in the gut that causes ulcers and stomach cancer), and food allergies which I totally believe I developed as a result of the Leaky Gut.
Is your doctor trained in nutrition and healing the leaky gut? I am sure he knows about H. Pylori but has he tested you for it?
If food is having an effect then at least part , maybe a big part, of your problem lies in your gut. Please seek help in that area.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
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posted
if I eat incredibly carefully
This statement is true for me as well and I believe it is a key to your problem. I had Leaky Gut Syndrome, Helicobactor Pylori (bacteria in the gut that causes ulcers and stomach cancer), and food allergies which I totally believe I developed as a result of the Leaky Gut.
Is your doctor trained in nutrition and healing the leaky gut? I am sure he knows about H. Pylori but has he tested you for it?
If food is having an effect then at least part , maybe a big part, of your problem lies in your gut. Please seek help in that area.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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cantgiveupyet
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Member # 8165
posted
Reading your post, i kept thinking toxins. I have you tried any of the binding agents like cholestermine(spelling?) or even phoscholine( iknow i spelled that wrong)
I wasnt on abx that long, but i wasnt the typical case either, i kept getting worse and worse on abx and it all involved my pelvis. My LLMD was stumped. I also felt better off abx. I havent been on abx since 2006, and i have to say I have improved.
Im still not healthy, but ive worked on the diet , excercise, and some toxin cleanup.
Im my experience with my own symptoms, i think my body was way too toxic before i started treatment, so when i added more dead bugs to my body it couldnt handle it.
Have you ever tried stopping abx, what happens?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Forgot to add that it is thought that 25% of the population are of the genetic type that they can't detox certain toxins, borrelia being one of them. My sister had the genetic testing and she is one that can't detox. My doc and I feel certain I am also in that group. Perhaps that is part of your problem?
Look into the Ritchie Shoemaker protocol for biotoxins. You would use actos and cholestyramine to rid yourself of biotoxins.
By the way - Please don't feel bad about posting your experiences no matter what they are. We need to hear of failure and success. This is how we learn and how you can hopefully get info that will help you heal.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I'd say: quit doxy! i had the same problem with it - got nearly bedridden, tons of new symptoms. i first took 200 mg orally, finally 600mg.
maybe there is an abx you havent tried? ketek, biaxin, clinda or even malarone?
biaxin helped me a lot in the last years - unfortunately it does not at the moment :-(
dont give up.
Posts: 226 | From earth | Registered: Sep 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
What about anti virals?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I think you have been given some excellent advice that offers hope for budging your symptoms.
I think our llmds just don't always have the answer for each individual they see. I know my 25 year old son was with two fine llmds - one that you mentioned - and a local one..... and still there was no budging of his daily symptoms. A total of three years with these fine doctors.
When we said goodbye to our second llmd, he said for us to consider heavy metals with my son.
Before choosing a third physician, I looked at the websites of Dr. S. who is mentioned above and Dr. C. from the midwest. I felt toxins and fibrin......and inflammation had to be preventing him from a change.... for the worst or better..... and I wanted these issues along with adrenal/hormonal issues and vitamin D and enzymes to be examined/incorporated in his regime. I also wanted to find a good ART practitioner to check for the heavy metals and to find the right combinations of supplements and meds for him.
There are pieces to your healing that still need to be discovered. Jelly, Aniek, TerryK, and luvs....I recall...... all shine a light on some of these pieces.
My other son is seeing an llmd who has embraced attempting the Cowden trial of one of our NY llmds and I am hopeful this will help him with his remaining symptoms. I am sorry this protocol did not help you, either, for I am sure your llmd is seeing some positives in others on this protocol.
But having no success with both abx or Cowden......well, that may be the clue to lead you to pursue these other bits and pieces to bring about a breakthrough.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Sauna for detox when you can't exercise
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi BB~
Please take a long, careful look at viruses. I am getting more and more convinced that people who have lyme, who get treated and don't get well also have viruses on board. I think Lyme messes with the immune system enough to allow the viruses that we've all been exposed to to grow.
Please go to www.hhv-6foundation.org. Read there on the testing link. Read my story in the patients forum under HHV-6 testing. I'm Timaca there too.
Just in the last several days I posted a new thread on Viral Testing here at lymenet. Find it and read it.
The symptoms for lyme disease and viruses are the same. The same.
My LLMD is one of the prominent ones too. He is learning along with me about the viral issue. A friend of mine is in the same boat (lyme and viruses). Her son was just tested, and he clearly has lyme (so many bands from Stonybrook it is amazing) AND his viral titres are high.
I think it's common to have lyme and viruses. I don't think the viruses are being addressed sufficiently yet by the lyme doctors as it's a pretty new field.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Wow! Well, thanks everyone for the wonderful input. I appreciate all the thoughtful replies very much.
Let's see...
Thanks dmc and goofykids, health and everyone for the well wishes, I also hope things change soon for all of us...
Aniek, yes, been tested for metals with dmsa challenge and mercury is low. No mold in the home. I think I have some very weird fungal issues, but Diflucan doesn't work for me anymore, so I'm going to try Sporanox.
What supplements target the autonomic nervous system?
Bejoy, yes, I always try to detox, but I think I have a problem in that area... my spleen always looks fine on ultrasound etc. My doc put me on fludrocortisone for a while, but it just made me wired
Hi Cave, thanks for the thoughts, we won't revisit the salt/c madness here, I think... I know the debate well
I dunno, I mean, after 3 years with sx worsening, it's hard to believe that what I really need is six years, ya know?
As for the Doxy, I have this weird ball / pump contraption that infuses the doxy slowly, at so many mils/sec. It is on a long line.
I don't think it's the causticity, because the sx it makes worse are my usual suspects, but thanks for the ideas.
My doc wants me to stick with the doxy, at a lower dose. I asked him again today to switch abx, but he says no, try to stick it out for a while longer.
Yes Kayda, I just had an ultrasound and CAT scan of abdomen, but I doubt they'll show much. I don't know what that pain is, but it's getting unbearable. Yeast?
Jellybelly, I would loove to try heparin, but it's so weird, not one of the three LLMD's I've had will give it to me! I asked Dr. J.B. - no. Dr. G... no. And my current LLMD just refused too.
I did read the heparin thread with great interest, but no one wants to Rx it. I guess they're afraid of bleeds or something. I tried the Rechtsregulat, Serra, Lumbro, Natto blah blah blah but didn't feel much from them. Still, I often feel my blood is like sludge... weird.
As far as sleep is concerned, no. I just can't sleep. It is by far my worst symptom of lyme, it drives me crazy. I now use a little xanax, a little klonopin, some ambien AND Xyrem, and that is the only way I can get around 6 or 7 hours.
My sleep study was a mess, no restorative sleep, severe disturbances, same brain waves as someone in pain, whose pain is keeping them from sleeping, no REM etc etc. What a mess.
Other strange thing, not one of these LLMDs wants to Rx Cholestyramine either. I asked Dr. B, Dr. G and the current one, and they all said no, they haven't had good results with it... darn. So if it's just toxicity, I have to figure out another way of detoxing. Can't do sauna with the line in... I dunno.
Yes Luvs, I think my gut is a total mess. My first LLMD, who diagnosed me, was the one who initially came up with the whole leaky gut thing... we've done a lot of work on the gut, but that remains my worst area. I don't know... I've had two endoscopies and a colonoscopy and no sign of H.Pylori... but then, it's the same thing. The tests are bad etc.
Cantgive, I would really like to just quit abx and see what happens, because I was healthier before I started this, but I have this stupid line in now, so I want to give my new LLMD his fair crack at this. He wants me to keep up the Doxy for a few weeks yet, so I guess I 'can't give up yet'
Thanks Valeymom, I have had some excellent advice, and I will look into the toxin area more. But how to detox without CSM, Heparin, sauna, or exercise? I dunno.
So yes, Cave, I am infusing from a slow pump on a long line, and I feel better on the much lower dose I'm on. So I dunno.
Thanks everyone so much for taking the time to write such good replies. This board is great. I hope there's a definitive cure for this monster really soon.
posted
Hi Timaca, yes, I have read about the viral issue, and your experience with it.
One gets bug-hunting overwhelm after a while... but, even if I did have high viral titres, what do you really do about it? Do we really have any decent viral meds out there that would do something?
Don't we have to try to get our immune systems to handle these things?
If people start showing up saying that they are much better from antiviral treatment, then yeah, I'm there. I'd love to hear what you've been doing to address the viral stuff.
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Borreliabrain and all,
In seven years of posting on this board, I have run into a lot, a lot, a lot of `` abx failures.'' Strange, are we being brainwashed? Normally we only confess bad things ...
I was an ``abx failure'' myself until I discovered that Lyme & Co. bacteria was not my only problem. I wouldn't have survived without taking antibiotics when the timing was right and my body could handle them. But......
In the years since then, I have learned that unless the bio-terrain/toxins that have been building in us are addressed, Lyme is very difficult to conquer. Usually it's more than one single factor that was missed causing the failure.
Most everyone responding to you mentioned some possibilities, and they could all apply.
Dr. K. told me just recently when I asked him for clarification on a comment he made during a recent teaching seminar, that ``we all know that the symptoms of Lyme are caused by both the actual Lyme spirochete, the co-infections, the opportunistic infections and the co-toxins (mercury, lead, biotoxins from all sorts of microbes, teeth, jawbone, etc.) Then the electrosmog increasing the neurotoxin production is a huge factor also.'' He calls this combination the new ``Lyme''.
Unless I missed it in quick reading, you did not mention heavy metal toxicity. Every symptom you mentioned can be and usually is caused and or/contributed to by heavy metals that are being released from the cell walls of the dead bugs that we have hit (successfully). Viruses are released in the die-off and are also often mistaken as a herxheimer. They often feel worse than what went before. Heavy metals and chemicals are difficult to avoid if we live on this planet.
Heavy Metals and chemicals (work exposure, hobbies) Parasites and a clogged up/toxic gut (nerves in gut hang on to heavy metals). Electromagnetic exposure in the home is becoming a most common culprit. (Pull the fuses in the house at night -- it mostly happens when we are in the same location for several hours - most the time our sleeping location. My doctor and others who are aware of this recommend changing location of your bed - even a foot toward N,S,E or West may help. Make the bedroom a sanctuary - without any electric gizmos. Viruses flourish and replicate like rabbits in electromagnetic surroundings! Toxic teeth, infected teeth, infected jawbone, root canals --
All need addressing
What I mention here stems from my own experience and that of hundreds of chronically ill who usually thought and were treated based on just ``I have Lyme Disease''. Yes, as recommended by others, if you can find an ART (Autonomic Response Testing) practitioner or similar kinesiologist/biofeedback you are bound to find out what is happening in your body. My favorite and the testing method that helped me get well is definitely ART.
Or possibly try find someone who has the Skasys or Asyra and does Laser Detox Elimination (LED) and is well trained in it, you will find THE QUICKEST ANSWER as to what the dominant problem is for you right now.
One of the posters here - JimBoB - has a great saying following his posts (and if I may borrow it here - thank you, Jim):
IF you DO what you ALWAYS DID, You will GET what you ALWAYS GOT!
So - maybe that will help. Take care and good luck.
P.S. Do any of you oldtimers realize how far we have come in a few years. Nobody ever dared talk or suspected metals or viruses or EMF, etc. I remember I was "chastised" on this board years ago when I talked about cats and dogs liking or disliking EMF. Now we even find mercury/metals mentioned in ILADS; and Dr. B. recently sat next to Dr. K. talking about it! And what they also discussed was the effect of UECs - spelled out - Unresolved Emotional Conflicts and such therapies as Family Constellation. Times are changing.
Posts: 9834 | From Washington State | Registered: Oct 2000
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What supplements target the autonomic nervous system?
I would be interested in this also..
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
These are all good thoughts and suggestions. I would suggest for immediate relief you do follow that stringent diet that helps you so much. Also for immediate relief the mild hyperbaric chamber is my lifeline and it is so for some others, not for all. In addition, VSL#3 is the best probiotic I ever found, the capsule without maltodextrin or fillers. Another thought is the one barksplinter's wife followed of very low dose rocephin. It does sound as if you're very toxic. GOOD LUCK!
Posts: 2276 | From united states | Registered: Jun 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi BB~
Go to www.hhv-6foundation.org and scroll down the page a bit. Read about the Stanford study, also read the abstract and ask your LLMD to get the entire article and read it. All the patients that had high titres to HHV-6 and EBV (tested at Focus Labs) got well using Valcyte, an anti-viral drug. The two with the lower titres didn't get well.
I totally understand what you mean about getting burned out trying to figure out what the heck we are infected with (or not infected with).
What happened to me, is I met one of the people who had been very ill (for 18 years) and had gotten well. Since he was sitting across the table from me, feeling well, and I could barely sit up it was hard to ignore him. I decided to address the viral issue, and figured what do I have to lose? So, I got tested. Twice. And I have high viral titres. By God's grace I was able to be seen at Stanford and I'm now on Valcyte. Am I well yet? No. I'm 7 weeks into treatment. Will I get well? Who knows? Time will tell. But in my case, my titres were high enough to warrant a trial of Valcyte.
(The titres were also high enough to make a lab pathologist say "it looks like you certainly have something going on here!"
Our immune system won't handle the viruses...the people in Dr. Montoya's study didn't have lyme...and many had tried many different ways to get well over the years, and nothing had worked for them...until they tried Valcyte. HHV-6 (like lyme) also works to suppress the immune system, allowing the viruses to continue to wreck havoc in our bodies.
Valcyte isn't without risks. Blood counts and liver enzymes need to be watched regularly. My WBC is decreasing, and hopefully it will stop doing that!
In my particular case it was try another antibiotic or treat the high viral titres. I decided to treat what the lab tests were showing to be abnormal. It made sense to me.
Honestly, I'd encourage you to read the thread here at Lymenet on testing for viruses. Then ask your LLMD to test you at Focus labs. Then go from there.
If you come back high, then you can decide if it's worth treating or not.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
You could try Valcyte, I think even for a few days. If sleep is much better, there could be big viral component.
I also have huge problems with detox and don't tolerate cholestrymine. Glutathione helps. The best is IV from Wellness Pharmacy, I hear. It's compounded, but insurance may reimburse you.
One LLMD told me regarding healing detox system to check out the protocal of a man named, I think Richard Von K....
I can't find the file right now, but PM me if interested. I haven't looked at the website yet, but I understand it is research, not product sales. It involves folic acid, SAMe, and some other stuff in a particular order.
Many experts say that we'll never get lyme till we get babesia. I have symptoms and herx on artemesia and then get better.
A LLMD told me that only/best way is very high dose with Dr. Z's artemsia.
I believe toxicity is the biggest issue (EMG, heavy metals, etc.). No pill can do what our own immune system can do if not suppressed by toxins.
I hope you find your answer.
Susan
Posts: 233 | From United States | Registered: Oct 2006
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Are herba a possibility or would they upset your gut?
Rife?
Bioresonance Laser Therapy?
Immune Response Therapy?
These are all of the box things that people have tried with variousc success stories when antibiotics failed.
Good luck. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
i have to say WOW at the list of helpful information and insights available by contributors to this board.
Thanks everybody.
Thanks BB for posting, as I think these questions and answers will be able to help many people who have hit a plateau as you have.
Take heart! You will get still better!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Susan mentioned you would be able to tell if your sleep cycle improved. Yes, Dr. B. mentioned this.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Another thing, regarding HHV6, Foxhillers on CFS-Experimental had high titers and totally brought them down with strong home brewed melissa officinalis tea. Google it. Of course the docs would not beleive a tea/herb as effective as a drug but it might be...
Posts: 2276 | From united states | Registered: Jun 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
To comment on what was said about valcyte and sleep. Valcyte has made my sleep and the sleep of my friend who is on it worse.
As with antibiotics and lyme, valcyte can, and often does cause a herx like reaction.
My sleep has been worse on it.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
The doc put my son on viral meds to try for a month and if improved sleep - then a sign of viruses playing a role.
My son had no improvement, so.....he was taken off the medication.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Any viral treatment, if effective, will also bring forth metal residuals. Take mop-ups to avoid recirculation and redeposit elsewhere. It is one eco-system -- . They are not sealed up quietly in little separate boxes. They live and keep house together - bacteria, viruses, fungi, metals, and all attached to some form of emotion. So don't be surprised if you let some of these go - I cried many a tear when releasing some of toxins. But the sun starts to shine a lot brighter with everything that departs.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
How's your average body temperature? Much below 98.6 and the body's metabolism slows down, toxins build up and other bad things happen like heavy metal poisoning. Simple to fix (usually).
My body temp had dropped to an average of 93 degrees. My body pH had dropped to 5.5 (super acidic). My metabolism was almost stopped. The bad stuff didn't get expelled and built up. A $6 glass thermometer, a box of pH test strips (pH Stix on eBay for $10) and a prescription for armour thyroid got my body temp back to 98.6, my metabolism working again and then my body again began to detox normally. Taking pharmacy cilantro helped move out the heavy metals faster.
I still have Lyme but being 98.6 again plus taking a transfer factor (Immune Care 64) to get rid of herpes six really helped. Now it's "just" Lyme but I'm surprised how much the other illnesses were adding to the symptoms of Lyme.
Hope this helps!
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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Glad you posted this. Hubby is pretty much in the same boat. Reading all these responses has been helpful for me.
My thoughts regarding hubby -- need to review his med records and make a list of all the abnormal test results -- many of those things have never been treated or inadequately treated -- things like HHV6, EBV, CMV, Borna virus, nanobacteria -- maybe need to be more agressive here.
Parasites are always a possibility -- can be reinfected.
G.I. issues are the pits -- one of hubby's worst symptoms -- just diagnosed with gastritis and duodenitis for 5th time in last 6 years. His first major symptom before any antibiotics.
Lemon Balm (melissa herb) was helpful for hubby with transient Bell's Palsy symptoms in the past. Thanks OxygenBabe for the suggestion -- think I will retry that.
As for simple detox -- go back to the basics -- epsom salts baths and castor oil packs for example. Also liver/gallbladder flush with lemon juice and olive oil. Or even coffee enemas.
Just reading a new book, "The Brain Wash". Includes the usual herbs for brain health along with some unusual suggestions such as Parsley for detox (NutraMedix brand actually did seem helpful to hubby). Also mentions a specific brand of oregano oil was helpful for ALS patients -- sounds like a G.I. or viral connection to me.
Have you tried a gluten free and casein (milk protein) free diet -- might be helpful.
Have not tried this yet, but hubby's LLMD suggested he try lauricidin for viruses (goal is to work up to 3 scoops daily). This is extracted from coconut oil I think.
One thing you may not have tried for hypercoagulation -- liquid herbal extracts of either prickly ash or spilanthes and gotu kola. I used one dropper (about 30 drops) of the 2 herb combo for hubby when he was treating Babesia -- it often stopped his tremors within a few minutes. Used this up to 3 or 4 times daily. There is a link somewhere discussing using these herbs for sickle cell anemia which causes the blood to form clots.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Just wanted to say I'm so sorry you are going thru this suffering. It must be incredibly discouraging for you at this point.
It sounds like the hopeful news is that your body was doing fairly well before the whole abx treatment began. Your body is strong, and was doing a great job of fighting the bacteria on its own! I would NOT fear getting off the abx. You have given it a good try. Also, don't cont. the treatment if the reason you are doing it is to please the dr., or take care of his feelings in some way. Trust your gut.
Sometimes we forget, when we are so focused on antibiotic treatment, and all these protocols to kill, kill, kill... Well, we forget that our immune system is BRILLIANT, AND INCREDIBLY MORE ADVANCED in attacking invaders than any antibiotic will ever be!!!
I have heard of Lyme patients who are diagnosed, but were high functioning with very little symptoms. I know of a couple that decided NOT to go the route of abx. - and to simply work on enhancing the strength of their immune system in a myriad of different ways - sleep, diet, no stress, etc.. All the basics that are proven by research.
i do not believe either, in the whole mumbo jumbo of "unresolved emotional issues" causing antibiotic/treatment failures. The fact is - we got the bad luck of being bit by a tick that carried a crafty bug. It's unhealthy to get into a guilt trip over not getting better for some ellusive emotional issue. With that said, counseling has helped me TREMENDOUSLY thru this healing/treatment journey with lyme disease. One of the first helpful tasks of therapy was to let go of the guilt and shame about being sick. IT'S NOT YOUR FAULT BB!!
I wish you all the best!!
Anneke
Posts: 364 | From California | Registered: Sep 2005
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posted
My wife was doing very very poorly 7 months ago. "Herxed" horribly on every antibiotic protocol she tried. She'd tried many other supportive therapies but was in a steady accelerating downward spiral. She started on Micro-dosed Rocephin for neuro-boreliosis and turned around within the month. Most start at 125mg... she started and remains at 50mg.
I don't know your baseline or expectations. She was less than 5% of her former self...now maybe 30%. She is not cured but at least she is not dead, and is working now on Babesia .
She had a GREAT day Thursday!
There will be a Doctor M speaking October 27th in Boston.... I ASSUME this will part of his talk.
Posts: 70 | From AZ | Registered: Sep 2007
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frakktured1
Unregistered
posted
BB,
Another quote from dr b.
Piroplasms are not bacteria, they are protozoans. Therefore, they will not be eradicated by any of the currently used Lyme treatment regimens.
Therein lies the significance of co-infections-if a Lyme patient has been extensively treated yet is still ill, suspect a co-infection.
unquote.
I don't believe you have indeed been extensively treated. However. A change in strategy seems to be in order.
It HAS been written that patients should clear out the babesia first and then go after the lyme.
Some llmd's follow this prioritised, process of elimination, some do not.
You may be suffering needlessly with an IV that is at present unable to work efficaciously.
posted
What an interesting thread this has turned out to be. Thanks everyone so much for all the great suggestions, and for taking the time to weigh in.
Well, Gigi, I have always read your posts with great interest. I learned about Dr. K a long time ago, back when I thought I had nothing but 'chronic yeast'. I do know a few patients of his personally, in fact. Some have failed with him, some done well. Same old story.
As for me, well, I've never had a cavity in my life, no root canals, no fillings. My DMSA metals test showed pretty low levels of mercury, though very slightly elevated lead... it might be worth a little chelation, but I can't see it being 'the answer' - though maybe I am wrong.
I just wish I knew what that pain in my gut is...
Thanks Obabe, I did try some hyperbaric once, just a few dives, and I did herx. I would like to do it again, but it is mui $$$. Also not permanent, as far as I understand.
As for a mild HBOT chamber, are they difficult to find? Do people sell sessions in them, or do you have to buy one yourself?
Timaca, I will be watching your progress with great interest. Please do post and update us on your progress.
Susan, yes, I've also tried Zhang's herbs! I even got seen by him a few times. It's strange, but his artemisia didn't do much for me. I take his Allicin caps every so often, I think they help with yeast, though not sure.
I keep testing + for babs, but never had any classic babs sx. I dunno. I did my 5 months Mepron and Zith... nothing.
Yes, my body temp is usually somewhat low, and I am very thin (too thin, keep losing weight on abx. not good).
That is one thing that abx do work on, interestingly enough. When I'm on them, my body temp goes up to normal. I feel miserable, but body temp is normal. Go figure.
Thanks Bea, I will look into some of your excellent suggestions, maybe the stuff for hypercoag will be helpful...
Anneke, your post is sooo intriguing to me. What if I did just stop, and did a lot of immune boosting things instead? I am really really contemplating that. I was sick before abx, but I was better than this. It's all very interesting.
Barksplinter, about the micro-dosed Rocephin... hmmm. Well, couldn't one, in theory, do IM rocephin or skin patches of it then? I would try low dose Rocephin, but I so want this PICC line out, so I can go back to Bikram Yoga, which really really helped me.
So, how does one treat a Piroplasm then?
Well, again, thanks so much everyone for this fantastic info. This turned into a very good thread, though I wish I had good news to report.
At this point, I am considering either stopping the whole thing, or switching abx and doing a series of 30 HBOT dives to see if the oxygen helps with whatever the heck is in my gut. May even get a rife machine...
Am torn between pushing on and stopping, but right now, I will try to carry on an see what happens in the next month or two.
This is, indeed, the most maddening disease imaginable, and I find, to be honest, that it's not guilt that gets me, it's jealousy.
I am soooo jealous of people who are well, I can barely take it sometimes. Just thought I'd get that out.
posted
BB, I also have bad gut symptoms with this. I think it is partially from the Bart and partially from the bacterial dysbiosis I have.
Have you ever had a stool test for bacterial dysbiosis? I ended up positive for citrobacter and klebsiella. I also have none of the beneficial bacteria except for acidophilus.
I am taking oregano oil, plant tannins, and uva ursi for my gut. I'm also taking Theralac, Ultra Flora, VSL#3 and s. boulardii.
It's helping, but my gut has a long way to go. Starting bart treatment has made it all worse.
Anneke mentioned Lyme patients who were highly functioning and showed few symptoms. That was me. I did show Lyme symptoms and did have three significant flares during the past 35 years. All of them were resolved with sleep, relaxation, exercise, diet, sunshine, etc.
The third one I had my amalgams removed, went on a very healthy anti-candida rotation diet, along with the other stuff. This put my Lyme into remission for another 12 years, though it would flare some when I was pregnant.
I never knew I had Lyme! About four years ago severe stress and another illness caused this flare-up. This time I had to find out what it was causing the problem as it was pretty disabling.
Anyway, my point is, all that stuff we can do on our own is every bit as important as any medicine/herb we can take.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
BB, where do you live? I would be able to find out what mild chambers might be near you.
It's my opinion, after doing both clinic dives and mild dives and knowing a lot about hbot, that it is adjunctive and therefore rather than suffer horrible herxes with deep dives, I would recommend starting at a lower pressure in a clinic chamber (1.5 ata for 60 minutes) maybe 3 times a week and see how you do. It simply does *not* kill BB permanently, even studies in animals have shown that...reduces #'s to very small, but stop the sessions, they come back. However as adjunctive therapy esp. when toxic or in a terrible rut it's fantastic imo.
Also please don't forget the VSL#3, it really is good. Read the book by Kelly Karpa, google her name, she cured her son of c difficile with this probiotic. She's a pharmacist.
Posts: 2276 | From united states | Registered: Jun 2004
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I'm so sorry to hear you've not made any progress. I was told by my MD that for every 1 year one has had Lyme, expect 3 months of treatment. For me, that is somewhere...about... 4 1/2 years! So, maybe you just haven't gotten there yet.
I agree with the others, and feel you are quite probably having problems riding your body of the bacterial toxin kill off, and you could benefit from other methods to help aid in detoxification. I also think it is possible you have some other problem in addition to Lyme. Just read what I have witnessed and maybe you could just have a simple 24 hour Heavy Metal testing.
DISCLAIMER: PLEASE NOTE: I am in no way promoting any of the following treatments or suggesting the safety thereof.
Because you have not obtained any relief in your disease symptoms and actually have gotton worse, I want to tell you about what I learned in Alternative Medicine that may help you.
I worked for an MD at an Alternative Medicine Clinic and, at first, I wasn't much of a believer in "Alternative" treatments and questioned the benefits of those oral supplements and IV infusions I was administering, that is.. in the beginning, but then, after I saw the benefit they provided in relation to the test results, and witnessed for myself the improvement of the pts., I developed a great deal of faith that they resulted in complete erradication of symptoms and promotion of health.
I've worked with many pts. that were previously diagnosed with Alzheimers, Autism, Chronic Fatigue/Fibromyalgia, insomnia, nervousness, memory deficits, hearing deficits, arthritis and pain, and sought the help of this MD I worked for because, like you, nothing was helping their problems and they were referred by another that witnessed the benefit.
After Heavy Metal testing, many of these pts. were not suffering from these diagnoses, but were suffering from the symptoms of Heavy Metal Toxicity instead. Again, this is not to say you don't have Lyme. You just may have this additional problem to your Lyme.
Some things to consider:
1.) Consider the environment you grew up in and what you were exposed to throughout your life, i.e. lead paint, well water, asbestos, metals, toxic mold, power plants, etc. If you know for certain you have been exposed, or even if you don't think you were exposed, you may have been and didn't know it!
* Get tested for Heavy Metals- 24 hour urine test is the best and most reliable as is the western blot for Lyme
Consider IV or oral Chelation treatments which has great success for the removal of heavy metals. I've seen many pts. that had Lead and mercury levels so high, sometimes off the charts respond to an extent that the presenting symptoms were completely resolved altogether!
I've seen Chelation work MIRACLES for so many that were hardly able to walk in and out of the office, and after 10 treatments, able to exercise, sleep, breath easier, think clearer, leg pain alleviated. You can investigate where Chelation centers are in your area.
Also, additionally,
2.) Consider IV Nutritional drips, which is also given at chelation centers and some regular MD clinics that administer IV treatments. High IV Vitamin C [50gms] drips, IV Hydrogen Peroxide treatments, both help to detoxify your body.
I knew someone whom had a really bad yeast problem, entire body, particularly in her gut, that extremely benefited from IV Hydrogen Peroxide detoxification twice a week. Another had a severe lung problem [emphysema] and responded so very well and didn't require O2 anymore.
We all know that oral High vitamin C supplementation is one of the treaments used for Herxing detox with Lyme, so it makes sense that IV Vitamin C would be beneficial. I received many of these Vitamin C treatments with B vitamins added which helped my Fibro fatigue which, at the time, I didn't know I had Lyme.
3.) Consider doing routine liver and colon cleansings to help to detox these organs, so they in turn can better increase their ability to help detoxify your system of Lyme. These are very simple and easy to do.
4.) Hyperbaric Oxygen Chamber- Lyme advocate, Brooke Landue, stated she received HBO treatments daily for, what.. a year I think, to help the antibiotics penetrate the organs better, thus the medicine getting deeper into the tissues to kill those smart bacteria that are so good at hiding in there.
Seems like since nothing else has worked for you so, maybe these could. Good Luck!! Any questions, email me privately.
How about Babesia, a parasite which won't be killed by antibiotics.
If you've read anything about treatments for babs then you should know that mepron and azithromycin has been recommended many times.
Of course with artemisinin.
I'm pretty sure you're pleased by this thread only because it has afforded you the opportunity to once again trash along with your co-horts antibiotic therapy...
But that's OK....
I gues I'm the only one who even thought you might have really had a problem....
posted
Hi everyone. I'm actually a little embarrassed to write this post, but I feel like I have a responsibility to post what is happening with me, even if it seems nuts, because reading about other people's experiences has helped me so much.
So, here goes. I'm having a real breakthrough on my Lyme symptoms, for the first time, on the IV Doxy. I can't believe it!
I'm also almost afraid to post this because I don't want to jinx it...
I know my postings seem all over the place. Lyme is like that... it is just a very complicated disease.
But it turns out, it really is "darkest before the dawn" and all that.
What I was experiencing when I first started this thread, was just a really protracted, severe herx.
I was convinced that the Doxy was making me worse, and that the 2 years of orals had just made me worse... but it turns out, I just hadn't found the right abx yet, and that the orals I had taken were, in fact, causing me to herx, which I interpreted as getting worse.
I guess I shouldn't be surprised I herxed for so long, because Dr. B told me he thought I was infected when I was around 10 years old (I'm much older now) - so, if he's right, I've had this a long time.
So, after I posted this thread that I was an abx failure, I went to my doc and whined and complained to him for a while, and he told me to back down to 100mg once every three days. I demanded he change the abx, but he said no.
So I did the reduced dose for a week, and a few days ago, I woke up (after a long, drugged sleep), and I realized that the clenching pain in my gut, my main Lyme symptom, had eased up tremendously!
Over the next day or two, it cramped back up again, but never as bad as before. I took my next dose, it got much worse again for a day, and then all of a sudden almost completely disappeared.
I hope this makes sense. But basically, I've had 20 years of feeling like someone was sticking a small knife into my gut under the left ribcage and slowly twisting it... (it is a bad gut spasm I guess), and for the first time in those 20 years, it's eased up.
Also, today, I had so much energy I danced around the apartment in the morning listening to loud music. I haven't felt that well in a long time.
Now, I posted once before I was feeling about 30% better on oral Mino and Plaquenil (after also having a nasty herx). But my doc switched me to IV doxy instead of mino, and I thought I was just going downhill on that stuff.
But I was wrong. The doxy just gave me a much stronger herx than the mino, so I got utterly depressed and posted that all abx had failed me and that I was going downhill... but I wasn't, I was herxing. I'm one of those people who don't believe that everything is a herx, but this really was...
Ok, I realize I'm not being very clear, (Lyme fog) but basically, it's working. I'm feeling better.
I'm still on Plaquenil too. I can't say that cognitively I've noticed much, as you can tell from this rambling post. Hopefully that will get better too.
Other good things is that my muscles feel more relaxed, and I think my sleep is a little bit better and deeper...
It's really exciting. There is hope. We are all so different, but IV doxy seems to work wonders for me, right now.
The only other things I had done was to take some advice from you wonderful folk and do a detox bath and a little rebounding... and I also took to eating some raw garlic, when I could handle it, because I felt the pain in my gut might be yeast related.
This is huge for me. This is the first real progress I've had in 20 years of fighting this thing, (although for most of the time, I didn't know what I was fighting).
Anyway, I want to thank everyone again so much for all the help. I will be adding in some of all your great suggestions as I continue down the IV road.
But I guess this means don't give up if you're sure it's Lyme... you have to find the right abx I guess...
posted
Hi Michelle!! I know! I'm soooo psyched. It's been about four days now and that gnawing, constant gut pain has not come back.
I almost can't believe it. That symptom has been with me for 20+ years... (Again, I'm almost afraid I'll jinx it).
How the heck are you doing? Did you ever try the Mino + Plaquenil? 'Cuz there's really something to that combo, I think.
I want to thank everyone so much for all the great advice on this thread, btw. I have actually printed the whole thing out, and am studying it for all the good detox ideas etc. Just because the abx are working, doesn't mean I don't need the tips on detoxing.
And I am going to discuss sequencing with my doc. There's no knowing what the Doxy is actually hitting, but it may be more Bart than Lyme, and I want to find out if he has a rational plan for addressing Bart, Babs, then Lyme...
I don't know. Sometimes I think it's all just best guesses about what makes us sick, and we just need to randomly rotate abx until we find combos that work. I dunno...
My doc told me to start upping my doxy dose this week to every other day, then to every day next week... so I hope the improvement continues.
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