Topic: Oldtimer needing help here re what to do next --Seibertneurolyme? others?
CD57
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posted
Hi -- I'm an oldtimer here (2007) but haven't posted much as I thought I was recovering. I need help on what to do next.
My symptoms have always been blazing bart (twitching, sole and palm pain, swollen ln, long bone pain, top of head, behind eyes, suicidal depression, anxiety, and depersonalization, neuropathies in hands and face, and back pain). I have treated with IV (pulsed) and oral abx and herbs, also tried HBOT with the IVs, for 3 years, on and off. Done Rife, MMS, high dose olive leaf extract, silver, Rizols, some Cowden, never got any hits there. I would get better for awhile, then relapse WHILE on treatment. I have done every combo for bart you can imagine: Levaquin + mino, Rifampin + doxy for nine months, Cipro plus mycobutin, now Rifampin plus Biaxin and Plaquenil.
I am at another dead end after having seen my 7th LLMD, a bartonella specialist. His key is high dose Rifampin + macrolide -- he had found that the lower doses did not suppress it enough. There are no drugs except gentamicin which outright kill bart, and that will only get extra-cellular bart and doesn't get into the brain....the best way they have to treat it is to suppress it/prevent its replication long enough, which is why the treatments take so long on those meds.
Something is preventing my bart treatments from taking hold. I have treated Lyme with IV and orals, and never got much in the way of a response to Mepron etc. The best drugs for me were Levaquin (then quit working), IV Clindamycin, and Tygacycline. The latter two are bacteriostatic likely for bart, but not bacteriocidal. My doc has a high success rate -- his patients are vets and people with much exposure to ticks and companion animals.
Is there something wrong with my immune system? What can I possibly do next? I am thinking of ways to kill myself as I have lived with this for so long, day in and day out. It doesn't even cycle anymore, the symptoms are constant.
I hate to post this negativity. But I need some help with next steps for treatment. IVIG maybe? Insights appreciated.
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CD57
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Unless these symptoms are not bart? could they be parasites?
BUT....I got SO much better on bart treatments.
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Razzle
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Have you dealt with any fungal/Candida issues? I've read that mold/fungus/Candida can make treating Lyme/coinfections much more difficult...
Also, I think working on supporting your immune system may be helpful. IvIg is one way to do this, there are others. Have you consulted a Lyme-Literate Naturopath or Integrative Physician for assistance with the immune support aspect?
Homeopathic practitioners can also perhaps help with supporting your body's natural mechanisms for detoxing and fighting infection.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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AZURE WISH
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If your an oldtimer what does that make me?
so sorry you are not doing well. I can tell you some things i found with myself
i found out i have leaky gut
i definetely have major yeast problems
i have food senstivities.
adreanals are weak
also another thing to consider is vitamin deficeinces
I know people are using byron white formulas (including a- bart) I dont know if thats something you have tried or not or if your dr knows about it.
do you think you detox ok? there was a point when glutathione was helping me (before i started reacting badly to it) you can do it iv or in a cream for the skin.
do you think treament just stops working or you become intolerant (a non typical allergic reaction) to it after a time?
I know some people have to look into things like kpu.
do you think you could have another infection that might make it harder to get under control?
I am sorry all i can offer is random thoughts. I hope you find out why you are not getting better soon
posted
I will come back to this post tomorrow as I am procrastinating right now and have something I need to finish up for a deadline.
At first glance the thing you have not tried is what worked for hubby. Rifampin at 900 mg in one nightly dose (before supper) with factive at supper. Hubby did this combo for several months.
He was on rifampin at 600 mg for about 3 1/2 months before adding in the factive. Then continued at the high dose for 4 1/2 more months.
The doc tried to get him to pulse factive and tindamax, but after 3 or 4 days he would start backsliding so we eventually just stayed on the factive continuously or for at least 5 days weekly. He was on the factive a total of 8 months -- stayed on if for 3 more months after stopping the rifampin. Also was on some sort of rotation schedule of tindamax while on the factive.
The factive defintitely was part of the magic combo. Hubby had done oral levaquin and oral cipro both in the past. But from the first week on the factive his RBC and WBC both increased to normal and stayed there -- both had been slightly low or borderline low for a couple of years.
Somewhere in there hubby was also on IV rocephin and IV Zithromax but these were added after the rifampin and factive had been in place for 3 or 4 months.
Got to go for now but I will be back.
Don't give up -- there is still hope.
Bea Seibert
P.S. Could you send me an email with the name of the bart specialist.
Seibertneurolyme (at) yahoo.com
Hubby did not do any treatment for babesia during the 8 or 12 months when we did the high dose bart meds. He worked his way up on the tindamax starting at just 1/4 pill due to previous adverse reactions.
He also started the rifampin and factive at 1/2 dose for about 3 weeks before getting to full dose -- not included in the timeframes listed above. Had previously done rifampin so we felt safe starting at 300 mg.
Looking back hubby actually did a couple of months of daraprim and then 8 rounds of coartem after stopping the rifampin but while still on all the other meds but I think it is highly unlikely those meds did anything for the bart as they did very little for his babs.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CD57
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Bea, PM sent.
I have not done Rifampin with Factive but I am currently on 1500 mg Rifampin with 1000 Biaxin!
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posted
Another possibility I do not see listed is IV Primaxin. While on it hubby had no seizure-like episodes which was his worst bart symptom. But like with IV Rocephin the first time in 2003 symptoms came back within less than a week so it obviously was not bacteriocidal just bacteriostatic for bart. But it might help in a combo. Hubby only did it by itself in 2007 with no other meds at the time.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CD57
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I have done: IV Clinda, Tygacil, Zith, Merrem, Rocephin, these were all pulsed with orals, with Dr J in DC.
My experience with Rocephin was the same as your hubby's. I felt great on IV Clinda for the first time in years. But I don't think that is bacteriocidal for bart, not is it even a firstline med. Same with Tygacil, although I think everyone had high hopes for it for both bart and Lyme.
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lpkayak
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when tx doesnt work its impt to check metals, mold, parasites, yeast etc
i have ffiends who didnt get well till all metal out of mouth and all root canals out
also many who were so used to being in moldy environment they didnt know they were in it and it stopped them from getting better
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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CD57
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Forgot to include that I do not have amalgams or root canals. Is this really true, that something like yeast or mold or metal could impact and negate bart treatment?
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glm1111
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Dr. K. treats ALL of his patients for parasites/worms FIRST and Lyme SECOND. Parasites play a MAJOR role in Lyme disease and can be considered a co-infection.
Do a search on here for parasites and also google symptoms. The tests are usually negative for parasites, and most doctors don't have a clue, even LLMDs unless trained by Dr. K.
If you want to get well, I would suggest you treat for parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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CD57
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I have nothing to lose I suppose.
Gael what were your parasite symptoms?
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rifampin is very effective for bartonella and mycplasma fermentans. i agree you should treat with it.
i also agree that you should look into treating parasites straight away. it is a much, much bigger force against us than is ever gone into on lymenet. i believe all lyme patients are dealing with it and i now fully understand why doc k insists on treating them first.
be careful in treating this, and how to deal with the toxins released when treating. look at fungus and eliminative organ health as well.
don't worry, you will feel much better than this when you address these things!
mo
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CD57
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I have nothing to lose I suppose.
Gael what were your parasite symptoms? Can they cause the above at all?
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posted
the neuro stuff, CD. the anxieties, insomnia, suicidal depression as well as physical pain and fatigue.
they overlap with some tbds, but your pure toxins like metals and the infectious toxins from intestinal parasites go right to the brain. especially from a compromised gut.
you need lots of good binders there and work solely on improving the health of the bowel first, nothing comes before that, and then treat parasites, folowed by organ cleanses.
mo
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CD57
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Can the presence of parasites really block treatment? I don't really understand that. I know some Dr K patients who are tx parasites and not getting well.
When I have a good day, every once in awhile....I have NO symptoms. ??
I am glad to hear that the mental stuff can be something other than this untreatable bart. That makes NO sense, even if the literature says that the abx are not very good for bart. I should have at least gotten to a remission, not relapsing ON meds. That makes no scientific sense at all.
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glm1111
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CD57, I had almost every symptom on the list the is on the Humaworm site. www.humaworm.com It takes several yrs to get rid of parasites.
I have/had the filarial worm co-infection and had EVERYTHING pictured on www.lymephotos.com come out of me after 6 mos of aggresive antiparasitic herbs and salt/c. Been treating since 06 with this combo.
I am mostly symptom free from Lyme and co, just getting rid of the rest of the smaller parasites. I have had Lyme for over 30 yrs, so it takes a little longer.
Maybe that's why some of Dr Ks patients are not well yet. I can tell you though, after 4 yrs of abx, 2 yrs of IVIG, this is what saved my life.
I suspect some people that have chronic lyme, may have the Filarial Worm co-infection and that's why they are not getting well. I would study and read everything you can about parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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i'll let others chime in here, but just to speak to the question of parasites blocking treatment..
they do so by way of compromising your digestive system to such a degree that you are not absorbing needed medications, nor eliminating poisonous toxins in your system.
your immune system is largely fueled by the bowel. also, this condition greatly hinders liver and kidneys from doing their job as well.
the tbd's are tough enough on your system, parasites are a huge burden and also make you ill in their own right.
mo
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Haley
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I would think that babs meds would hit parasites if you have parasites.... Mepron, Artemesia etc.... These meds are anti-parasitic. Maybe they won't completely kill every last parasite but you would notice a difference on these types of meds.
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CD57
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Gael or Mo, did you guys have bart/BLO?
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karenl
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Haley, this is not enough, you need to do the full Dr. K ptotocol if you want to be completely healthy. Herbs are also ok.
CD57, the parasite treatment is necessary for everybody. I did not believe Gael for years and now I am so much better.
I found out that people who do extreme sports always take antiparasitics. They call it get rid of foreign organisms and it is in their sports nutrition.
Just take the stuff together with other treatment and repeat it always later.
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glm1111
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CD,
I was dx with Lyme, bart, babs and erlichis. I was CDC positive with a bullseye on top of my head that my LLMD found after 30 yrs.
Karen,
That's very interesting about the extreme sports people taking antiparasitics.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Razzle
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Interesting that Dr. K did not want me on parasite treatment when I saw him... I guess the 10 years of parasite treatment I'd had prior to seeing him (and I got worse progressively during this whole time) proved that parasites weren't my big issue...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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TF
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Another consideration is are you doing the 1 hour of weight lifting every other day that Burrascano recommends? If not, I strongly advise you to start doing so. My lyme doctor told me I would never get rid of lyme until I started doing it, and many other lyme doctors tell their patients the same.
Read about it starting on page 31 of Burrascano. Here is a quote at the start of the section:
"LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission."
He then goes on to explain how this particular type of exercise boosts the immune system, probably drives the meds deeper into various niches of the body where these diseases like to hide out, kills the diseases due to increased oxygen to our cells, etc., etc., etc.
I proved it to myself twice now in my lifetime that this works.
Be sure to do a full body workout each time. Be sure to rest on the off days. If you can't start out doing 1 hour, work up to it, even if it takes months. Do many repetitions of light weights so that you can do the hour.
I could only do 10 minutes when I started because my major lyme symptom was extreme muscle weakness. Hey, I couldn't stand for more than a minute, and my legs shook like jello just walking down the basement steps to get to the weight machine. I couldn't hold a phone for more than 30 seconds before the muscles in my arm cried out. So, telling me to lift weights for an hour was like telling me to climb Mt. Everest. But, I persevered and was eventually able to do it.
You ask if there is something wrong with your immune system. The answer is, "Yes." When you have lyme and babs, there is something terribly wrong with your immune system. It has been compromised, like that of AIDS patients, by these diseases. So, you have to do something to bring it back to life.
Quote from Burrascano, page 3:
"1. Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)....
Chronic Lyme is an altogether different illness than earlier stages, mainly because of the inhibitory effect on the immune system (Bb has been demonstrated in vitro to both inhibit and kill B- and T-cells, and will decrease the count of the CD-57 subset of the natural killer cells)."
Aerobic exercise depresses the immune system for too long a time, so don't do it. That includes walking and most of the other typical exercise routines people do.
Please read carefully what Burrascano is saying to do and why. I hope and pray it helps you achieve a full recovery.
I also thought many times of killing myself when I had undiagnosed lyme, babs, and bart for 10 years. A person can only take so much suffering. Yet, I got well.
It is now over 6 years since I completed my treatment. I give the credit to the Burrascano protocol and the doctor I found who followed it.
Burrascano's protocol is a 4-pronged approach:
medications supplements diet, and exercise (1 hour of weight lifting every other day)
It takes all 4 things to get well. Some doctors don't bring up the exercise requirement. It really, really, really is essential. Please give it a try.
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CD57
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THank you all. Please keep suggestions coming. Karenl, would like to hear more from you.
Whatever this bug is, it comes back fast, like 2 days fast. It is pretty unbearable.
TF I recall you got rid of bart pretty easy with Dr S?
I qualified for IVIG. Should I do that?
I am doing yoga as often as possible.
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glm1111
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Razzle,
If you just treated parasites for 10 yrs without treating the other infections, it's not a mystery why you didn't get well, It's the same dilema, if you just treat the infections and not treat the parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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map1131
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CD57, so sorry you are back and searching again for answers. Reading your thread, I almost fell out of my chair on the amount of abx you take to fight this thing named bart.
Oh my. You're trying to kick some serious bart butt. Parasites, I have to agree with others could be the reason you have gotten stuck.
Something else I thought of from my own experience is having blood test for strep titers. Also have you had a staph culture done?
I spend alot of time now a days fighting one or the other or both. I am doing this with my rife machine. Yes, sx can and will return within that short time period of a couple days.
My recent strep tests were high. My PCP believed them to be from old infection. I don't agree.
My next visit with him I have already decided to have a API Staph culture done to see what shows up there. I plan to have it done when I'm having one of my horrible outbreaks on my right facial areas which include ear, neck glands to root canal to nasal cavity across my cheek.
I'm still peeling away at my onion too. I wish you well CD57. I know you won't give up until it's done.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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CD57
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I tried Rife too.....but for that to be successful you have to have the right frequencies for whatever your bug is.
I never got hits on the regular frequencies for Lyme and bart.
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when i was very ill years ago i was diagnosed with bartonella, babesia, mycoplasma fermentans and lyme.
i have a new mix from a new bite now, with acute ehrlichiosis probable babesiosis and who knows what else.
i'm glad i had a big clearance of intestinal parasites prior to this new infection, because the infection is kicking my ass reguardless.
in any event, i am YEARS past years of abx tx, on all 'natural' protocols for recent years, and still had parasites to clear on my last cleanse. they are stealth, nasty invaders.
mo
[ 08-15-2011, 06:20 PM: Message edited by: Mo ]
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Hi CD, I thin kyou and I have the same thing. I relapse whilst on any combo now and I know its Bart or Brucella I am dealing with. Maybe both. Levaquin like you used to me a life raft but stopped working and I am pretty much threading water with a hardcore combo of Bicillin, flagyl Mino, Bactrim, as well as roating Levaquin 750mg with 900mg Rifampin to keep this thing at bay but its just a means to an end until I can find a solution. I am leaning towards IM Gentamicin now as a real option followed possibly by Bea's suggestions of using factive again, but in a more prolonged aggressive way in combinations like I am doing now with the levaquin. PM me if you want to brain storm a little. Keep up the fight.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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Tincup
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Hey hey CD,
Nice to see you! Sorry it is because you are feeling so yulk though.
I can not add anything scientific to your post. But I can think and throw a few ideas out there for you to consider.
1. IM Bicillin. Seems that some of our old timers do quite well on it. We don't know why- another infection not yet identified? Or an action by the "cillin" we haven't figured out yet? Just don't know, but I've seen it happen often enough to mention it.
2. You described relapsing while on meds. Could this be a herx that won't clear as quickly because you are "popping" more quickly than your body can do the "mopping"? Many have discovered the toxins are causing as much or more problems than the infections themselves.
3. Have you been checked for MTHFR?
Just a few things to get you thinking. Hope something clicks for you!
CD57
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Don't think it's a herx, been going on for 2 weeks.
There's not too many of us with this bart or brucella infection (brucella, that is interesting). NMN do you have any positive tests for brucella?
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CD57
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anyone else? I am getting worse by the day.
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A lot of your symptoms point to mold illness...at least according to what I've read/heard from the mold "experts". After several years of many abx, developing leaky gut and fungal issues (candida, molds, etc) is VERY likely, if not inevitable.
I've learned how harmful EMFs can be, and your symptom list is also consistent with EMF & other environmental illnesses (which would include mold!).
Did you know EMFs make mold toxins more virulent? (as per Dr. K). From firsthand experience, I can attest to this brutal combo...which can also become a vicious cycle of continuous worsening fungal/mycotoxin load and major inflammation.
Also note that your neuro symptoms can be due to inflammation alone. The infections and toxins cause/worsen the inflammation, but often the inflammation (more so than the infections) is what makes us feel so awful and will even hinder recovery.
Have you looked into CCSVI? Dr. K is finding this issue in most (or many) of his Lyme patients, and often turns out to be the main cause of the patients' brain/neuro symptoms.
Just a few things to consider looking into...I'm certainly no expert, but have learned a lot about such issues that are preventing many of us from getting better (and usually make us get sicker and sicker over time, and worse after each abx treatment).
Addressing all these issues has definitely saved my life...or at least my brain & sanity! Posts: 408 | From California | Registered: Apr 2008
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I had gut problems for about 6 years prior to becoming ill. I have always thought this disease started in the gut as it was a very slow decline. I believe I developed a leaky gut during this time and I happened to start getting symptoms whilst living in New Zealand.
its funny Erica mentions mold as my neuro stuff started whilst I was sleeping in a room in Christchurch that has a bad mold problem on the wall behind my bed. I have always been suspicious of this, not to mention I had some Lead and Mercury exposure through my work there at the time (double trouble) I believe I just went over my qouta of toxins.
The reason I am saying all this is that Brucella is very similar to Bartonella and responds to the same meds AND it gets into the body through the gut, and let me tell you,
I ate some seriously dodgy crap on my travels. I recently noticed something new in my bart flare ups, involving bruising of the vertabrae in the middle of my back.
"If untreated, the disease can give origin to focalizations or become chronic. The focalizations of brucellosis occur usually in bones and joints and spondylodiscitis of lumbar spine accompanied by sacroiliitis is very characteristic of this disease. Orchitis is also frequent in men"
I have uveitis with this this too which is a classic sign.
I am starting Shoemakers Cholestyromine protocol today for the first time to see if it helps. I will let you know
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Sorry you are regressing after such a long time....
Two things pop into my mind:
Have you tried or considered energetic testing? A good practitioner will be able to see what is the priority, and what may be holding you back from remission. Find someone who does muscle testing or has an electrodermal screening device like an Asyra. They can indicate what infections, parasites, fungus, yeast or viruses are the most prevalent at this time, and can test for what treatment is best for you.
Have you treated with biofilm-busting therapies? These bugs hide in biofilm, so antibiotics can't get to them. Heavy metals are necessary to construct biofilm, so using something like EDTA, along with antibiotics will allow the antibiotics to penetrate the biofilm. I have been using Detoxamin (EDTA suppositories) and lumbrokinase and bromelain. I just bought Interfase plus, which also busts biofilm. I was at 75% improvement, and have improved to about 90% since adding in biofilm busters.
Also, make sure to take a lot of binders and detox when biofilm-busting, because you release alot of toxins that can make you feel bad.
Posts: 964 | From san diego | Registered: Oct 2009
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Good info Bailey and TF. I weight train religiously and would have lot my mind without the gym. I take Serrapeptase and EDTA for biofilm too.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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CD57, Another thing I forgot to mention is a cell wall drug. When I dropped it I got a hell of a lot worse slowly over a long period of time. Lyme will sneak back in over time and you will not notice what is happening. My LLMD had me drop the cell wall drug after 5 months of IV Ricephin and I ended up in a serious fight with babesia and Bart and it was a year of hell. Nothing would work until I added back in the cell wall drug for lyme (Ceftin) I recently started back on Bicillin and everything began to work properly again. Don't forget about the lyme!
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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map1131
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CD57, yeap you need the right freqs to go after the right bad guy. That I've learned.
My recent Igenex came back negative for bart and babs, ehrlichia, etc. Well based on years of sx bart or his cousin are playing he!! in body and have been for years.
I do get hits on some individual bart freqs that I found on the rife thread on this site. I've also found some lyme freqs that are very helpful in keeping the load down.
I've been suspected babs raising it's ugly head from old infection or from a newer embedded tick, so I've been hitting babesia too.
All we have to go on is our gut instincts or muscle testing if we are blessed enough to have an expereienced ND to help.
I've definately knocked some bad guy down in the last 2 mths.....I've been having skin lesions on different areas of my body and these lesions were no doubt on a 2 week cycle for over 5-6 years.
Something also was wrecking havoc in the GI track too. I have done a complete turn around in my gut also....which my PCP had told me about 2 years ago my skin lesions could be a result of the bacteria controlling my GI.
It looks like he was on target. Now on to the next set of issues. That's the hard part trying to figure out what to go after next.
I really think it's past time for parasite cleansing. I did parasite kills many years ago. But I've been tick bite, mite bite & ? bite so many times since then, no telling what or how many of those nasty son of a guns are taking up house in me.
CD57, please look for that huge rife thread on this site. Lots of good info and ideas on there.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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