I have been reading these boards for awhile. I had a different username, but my email got hacked along with my facebook and other accounts, so I am starting out fresh everywhere. Kind of a loss but worth it for privacy!
Anyway, I have been treated for lyme for about a year this July. I have done oral meds, followed by IV meds due to serious neurocognitive issues. I did great for about 2 months, then I started to regress. Kind of at a loss of what to do. I am in my 30s. Moved in with my Brother and his wife (they have a sweet guest room). Spend time with my parents too (I have my limits).
I am at a crossroads, more antibiotics? Slowly but steadily rebuild my immune system? Do supplements and herbs?
Take the plunge for an outrageously expensive Hyperthermia treatment?
Old symptoms: Over 25 specific to late stage lyme
Current: Brain fog, pulsing joint and nerve pain, muscles that feel locked and tight. Crazy seasonal allergies (feel tingly when my antihistamine wears off, like i am about to get hives)
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Parasites will make anyone regress, so that is where I'd start.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: Take the plunge for an outrageously expensive Hyperthermia treatment?
No. There are so many better turns to consider but this is most certainly not one I would consider. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First of all, the timing of your treatment is still in the early stages. I know it seems long - and it is - but even with the best LLMD and best protocol you are likely looking at some time to go.
Even the "best protocol" changes, as you know.
Be sure coinfections are considered.
Be sure liver support is adequate. That is often why some have set-backs.
I would never suggest just going to "support" methods. Infection(s) require direct action, however that might be done.
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)
RIFE MACHINE LINKS here, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Did you start to digress while on the IV meds? or did you stop treatment all together and then start to digress?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Finished 12 weeks of a combination of IV meds.
I maybe felt ok for about 3 weeks, then its been a slow decline since then.
I do have plenty of liver support/detox support.
I am on a pretty high supplement protocol.
The body pain is a new symptom post antibiotic treatment. At first I was afraid I did that to myself with the treatment. I suppose I either have auto-immune issues or other problems are exploding out now that I kicked the lyme back a bit.
I'm not sure the lyme is gone totally, I have neck pain, and pain in the head. I started massage therapy to focus on the neck muscles, but I can only afford a few more sessions.
2 months ago I took Biltricide because my LLMD thought I might have parasite issues. Now I am on a herbal parasite protocol.
The parasite thing is tough for me. I did have a comprehensive stool analysis, but I only came up with a "benign" amoeba. I was hoping for something more significant, though I know negative stool test doesn't mean something else isn't there.
I did wildlife rehabilitation for years so, plenty of exposure to wild animals. Plenty of engorged ticks pulled off myself. Traveled to Brazil to study abroad about 10 years ago. Hard to imagine I have parasites in me though. Maybe I should have been sharing my dogs ivermectin.
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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posted
To add, my doctor has been treating me with the Byron white formula for RMSF. I test negative for it, but can you have asymptomatic RMSF?
I am unsure if I am taking that herbal formula because the doctor suspects I have it, or s/he likes the formula for what my other problems are.
I suppose just trying to peek around and she what else is under the hood
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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posted
If your muscles are really tight, I suggest you discover which magnesium supplement you respond to that will allow your muscles to relax. There's glycinate, citrate and I think more kinds. Natural Calm powder can relax muscles.
One more trick I do - I stretch out in the swimming pool and it seems to help all tight muscles - I think it's getting oxygen in and waste products out.
I did it majorly for several months and now I do tune-ups. I also do light lap swims with a snorkle and goggles so I don't have to turn my head when swimming. I used a torso float in the beginning to hold me up, when I started out with the spasming muscles. It feels good to do something that makes a difference!
Posts: 13116 | From San Francisco | Registered: May 2006
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
12 weeks abx is just the start of treatment for most people with chronic lyme.
People talk about plateauing after years of treatment, usually, and after trying many many protocols and products.
Herbal formulas, why not? I usually find that right plants in combinations work MUCH better than any drug in combinations. Not only for lyme, but for anything.
There are reasons for that. Buhner books on lyme and antibiotics give you many reasons.
Good luck!
Posts: 6199 | From Brussels | Registered: Oct 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Agree with Catgirl. Treating parasites can be key to recovery. Check out the PARASITE WARRIORS SUPPORT THREAD and google parasite symptoms.
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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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It sounds like your doctor is not a lyme specialist. You don't give a patient 12 weeks of IV and then stop all meds. No way!
You need to treat until symptom free and then treat at least 2 more months. This is what Dr. Burrascano says and he was the most famous lyme doctor in the world.
You need to read and STUDY his Lyme Treatment Guidelines and learn what good lyme treatment looks like.
Here is a quote for you:
"Patients on I.V. therapy who have a strong reaction at the fourth week will need to continue parenteral antibiotics for several months, for when this monthly reaction finally lessens in severity, then oral or IM medications can be substituted. Indeed, it is just this observation that guides the clinician in determining the endpoint of I.V. treatment. In general, I.V. therapy is given until there is a clear positive response, and then treatment is changed to IM or po until free of signs of active infection for 4 to 8 weeks. Some patients, however, will not respond to IM or po treatment and I.V. therapy will have to be used throughout." (page 17)
I.M. means intramuscular. That means shots in the buttocks. PO means by mouth, meaning oral antibiotics.
So, as you can see, you don't give a patient IV and then stop all meds.
Here is another quote:
"If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)." (page 20)
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has(including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
The exercise must be one continuous hour of weightlifting every other day. This boosts the immune system which is necessary so that the patient does not relapse when treatment is ended. See page 31 of Burrascano.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
"COURSE DURING THERAPY
As the spirochete has a very long generation time (12 to 24 hours in vitro and possibly much longer in living systems) and may have periods of dormancy, during which time antibiotics will not kill the organism, treatment has to be continued for a long period of time to eradicate all the active symptoms and prevent a relapse,especially in late infections. If treatment is discontinued before all symptoms of active infection have cleared, the patient will remain ill and possibly relapse further. In general, early LB is treated for four to six weeks, and late LB usually requires a minimum of four to six months of continuous treatment. All patients respond differently and therapy must be individualized." (pages 16-17)
quote:Originally posted by Robin123: If your muscles are really tight, I suggest you discover which magnesium supplement you respond to that will allow your muscles to relax. There's glycinate, citrate and I think more kinds. Natural Calm powder can relax muscles.
I believe my supplement has Magnesium Hydroxide in it. I increased my dose the other month too, so I am not sure what it going on besides some type of flare-up.
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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quote:Originally posted by Brussels: 12 weeks abx is just the start of treatment for most people with chronic lyme.
Well that was just IV. I had 3 months of Doxycylcine, a short gap while I switched doctors, then 3 months oral Zith, 12 weeks IV, + 1 month of another oral med = 10 months total.
quote:People talk about plateauing after years of treatment, usually, and after trying many many protocols and products.
I'm just worried I will have to go back on antibiotics. Its a lot of damage I could be doing to my body (gut microbiome, mitochrondrial toxicity), when there isn't any definitive data that it works beyond antidotal.
There are people who cured themselms with herbs only, and I have been doing a targeted approach with Herbs and antibiotics when necessary.
My LLMD is ILADS trained and I believe even helps train other doctors, so I'm not worried I am not in the hands of an 'expert.' Its just some doctors rely more on antibiotics than others.
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Don't count the months when you were on just one antibiotic. That is called monotherapy. It doesn't work.
So, don't count the 3 months on doxy. That did nothing but turn your lyme into cysts. The 3 months on oral zith also was non-productive.
These bacteria can evade any one antibiotic. That is why you must be on combinations of antibiotics as Burrascano emphasizes.
I don't know why you think that there is no definitive data that the Burrascano protocol works. You say it is just antidotal. The Burrascano protocol is the most successful lyme treatment protocol in the world.
See page 22 "Safety" to address your worries about safety.
I was cured of lyme, babesiosis and bartonella once I got to a doctor who followed the Burrascano protocol. Then, I sent 5 of my personal friends to docs who followed it and they all got rid of their disease also.
NYC is full of folks that Burrascano cured. He also cured himself. And, all of the lyme doctors had lyme and got cured by following Burrascano.
There is a reason why doctors all over the world follow it and why people from all over the globe came to be treated by Dr. Burrascano. People bring their children from all over the globe to be treated with antibiotics by Dr. J. in Connecticut.
What you really should be worried about is the ravages of undertreated lyme disease.
If you follow Burrascano, your gut will not be destroyed. I never got C diff from the treatment either.
I wasted 2 entire years going to a doctor who treated me with just one antibiotic for lyme. That was a waste of 2 years!
Study Burrascano and get good lyme treatment. Start counting your months of treatment by counting only the good months. We all waste time with docs who don't know enough in the beginning.
Educate yourself about what good lyme treatment looks like and then find a doctor who will give it to you. Drop any that won't. They are wasting your time and their treatment is useless.
If you have evidence that some other protocol works better, I'd like to see it. Then, I would start promoting it.
I promote Burrascano because I have seen it work over and over again. And, I heard Burrascano speak twice. When you do, it is obvious that he is an expert in this field.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many above replies are excellent.
As you mention herbs, if you go that route be absolutely certain that whoever guides you knows as much about the science of lyme / TBD as possible.
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by TF: Educate yourself about what good lyme treatment looks like and then find a doctor who will give it to you. Drop any that won't. They are wasting your time and their treatment is useless.
My LLMD presents for ILADS conferences, so I know this person has the credentials. I have an appointment in June, so I need to discuss the next steps them.
Ive been nervous that I have been off antibiotics too soon and for too long. I did expect to be on them for months.
My case may be more advanced then I thought it was.
I'm really not sure what to do. Yell at my doctor for more antibiotics? Continue with the byron white herbs and cat's claw?
I have a LOT of gut issues so antibiotics scare me almost as much as lyme.
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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I am mainly targetting the co-infections right now. Babesia, bartonella, etc. Perhaps its time again for double duty against the lyme?
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No, don't "yell at your doctor for more antibiotics" if your doctor's work is working for you, the PLAN for the future seems solid, that matters.
If you have questions or concerns, talk to your doctor but no "yelling" is needed, really. A doctor has their own style. Be certain of your doctor's expertise. If that fits, stay. If not, consider other avenues.
Not even all doctors who present for ILADS have the winning approach for every patient. There is a wide range.
For now, yes, continue the BW herbs and Cat's claw WHILE you assess options. I'm not sure it was clear that are doing that . . . some replies may be more toward what you wrote about antibiotics.
Your initial post seemed more cut and dried as to just antibiotics and just about lyme. It seems with each post, a broader look at the plan is unfolding.
First post: " . . . Do supplements and herbs?
Take the plunge for an outrageously expensive Hyperthermia treatment? . . . " (end quote)
So, we did not know you had gone to herbs yet . . . and to think they next jump, the ONLY OTHER OPTION would be to Hyperthermia was just a huge leap.
So, now that we know you are covering some other bases, that helps to know.
However you proceed, it's going to take time.
I will say that TF has excellent points in getting as assertive treatment as possible - with the right support methods as well.
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
- by a leading ILADS LLMD - released Nov. 2013
Also read all of BUHNER's books. Very important detail there that I think you will appreciate. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Good lyme doctors treat lyme and at least one of the coinfections simultaneously.
I would suggest discussing the possibility of doing this with your doc at the next appointment. Ask, for example, if he would be willing to treat you for lyme and bartonella simultaneously for the next number of months.
Bartonella is generally the coinfection that causes gut issues, by the way.
Lyme is slow growing. So, your return to feeling lousy over a 3 week period could be lyme. It usually takes about a month off meds for the lyme to start affecting the patient again.
Coinfections, on the other hand, can come roaring back more quickly.
So, once you tell your doc what has been happening and he tells you what he proposes to do next, you can decide whether to stick with him or not. Perhaps you have influenced how he is treating you, like if you are always saying you want off antibiotics or fear them, etc.
My advice is to never be without a lyme doctor. So, if you don't like the treatment your current doctor puts you on, go looking for another doctor. But, continue treating with your current doctor until you get a new doctor whose treatment is in line with what is considered good treatment.
ILADS lyme doctors can take many different approaches to this disease. Learn what the doctor's approach is before making an appointment. Saves you a lot of time and money.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Sorry, in my brain fog I might not be making much sense at times.
I have been under constant treatment, multiple antibiotic herbs and drugs at a time. When I was on IV, I was taking rocephin AND Flagyl.
While I was just on oral Zith, I was also taking mepron for the babesia. I have been treating the babesia non-stop since last fall, with zith, mepron, cryptolepsis, malarone, etc.
Since stopping the antibiotics in January, I have been treating the bartonella as well as the Babs, with herbals.
Last month I started treating parasites, first with biltricide, now with a 30 day herbal parasite cleanse, to switch it up. I had been taking Byron white A-P before the biltricide.
In my panic of not feeling well, I guess i forget how heavy my protocol really is. I have been on years of antibiotics in the past for unrelated issues (acne mainly). I think I clocked 2 years of doxy/minocycline ack in 2002.
So its not necessarily a bad plan to be treating the coinfections now, even if the lyme is not totally knocked back. I'm also taking something to help with biofilms. Whether or not I would also be benefiting from oral antibiotics right now, I guess is the million dollar question.
I am hesitant to think that that is the only answer, Ive talked to so many people who didn't get relief that way. I just talked with someone today who didn't get well after 6 years of antibiotics.
I don't doubt that some people have done a year+ and gotten cured. The uncertainty of not knowing if that would benefit me, is hard. My body is so worn down.
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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