posted
So my llmd diagnosed me, he's been supportive, he's been affordable but in 7 months I've made no progress. He started treating Lyme (igenix pos) and I felt better for a little then worse. So he tested for Cos but only Bart and babs. I'm pos for both. So now I'm on meP/zith and Lyme and Bart are flaring like mad!! He won't treat concurrently and his dosing is on lower end generally. I'm starting to have speech and body jerking. My brain is clearly affected. Time to switch right???
Hard decision Posts: 342 | From Philadelphia | Registered: Dec 2011
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Sometime you do feel worse before you fell better. Especially when you start a new med. I would talk to your LLMD first, and see what his game plan is
Posts: 1276 | From maryland | Registered: Jan 2009
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gmb
Unregistered
posted
Seven months is a short time. I agree with Beths, talk with him on a game plan.
Omnicef would be a good abx to add for more lyme coverage.
It might be too early to switch from treating babs to using Rifampin for bart. Babs is the toughtest to beat down. Maybe increase Mepron to 2 tsp twice a day or add Bactim DS.
Do a search on Dr. H latest babs treatment recommendations from a Fall 2011 seminar posted here a year or so ago. Print it out and give him a copy for discussion.
posted
I don't want to switch off babs treatment I want to treat all at once and he won't! Also, when we were treating for Lyme he only have me 100mg/2x day with doxy from what I've read that's not enough.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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posted
I don't want to switch off babs treatment I want to treat all at once and he won't! Also, when we were treating for Lyme he only have me 100mg/2x day with doxy from what I've read that's not enough. Also, he says detoxing and diet don't matter. I don't like that. Shouldn't I be doing everything possible. And he won't test for other cos because days doxy should treat anything else I have.
Just too many little things and I not geting well and while I dot expect to be cured at all by now I certainly shouldnt be getting worse.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
When you were on doxy 100mg 2x, were you also taking another abx? Getting worse before better is why this road is so difficult.
Jessie, throwing everything at it at one time isn't necessarily the cure all for you. Seven months is a very very short term. You have positive lyme, bart and babs. It's going to take sometime.
Patience my dear, patience.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
I understand it can take years. I do. And I am in it for the long haul. But, I still think after 7 months I should see trending in a positive direction -- even if only minimal.
Moreover, had he tested for Cos at the start, I would have done what Dr. B suggested and treat those first instead of treating Lyme first and getting nowhere and all the while allowing the Bart and Babs to have a party.
In any event, I am at least going to meet with LLMD number two. If I had any other disease I would have gotten a second opinion. I never did with the LLMD because at first I was SO pleased to meet a doc that could diagnose me. I want to be more engaged and aggressive about my treatment and my current doc just isn't down with that. Many people treat Babs and Lyme. My doc says not possible. I just don't think that's true and I'm not willing to treat babs for a year and have lyme take my speech in the meantime.
That's not unreasonable, is it??
Posts: 342 | From Philadelphia | Registered: Dec 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I switched LLMD's at 7 months in- it was a very scary feeling, since they are far and few between.
Don't burn the bridge- I did not. I felt like I had educated myself well, and the treatment path w/
1st Dr. I did not feel comfortable with- and yes, I was honest and discussed my wishes/beliefs- to no avail.
So I switched. Glad I did. Never have said 1 negative thing about the 1st- the person is brilliant-
I was just fortunate enough to find another with my treatment beliefs/intuition.
If you have the money, and want to get a 2nd opinion from another LLMD, good for you.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thanks. My llmd is wonderful and if I switch I plan to let him know plus write him a thank you note. I think he's great in ma many ways and can help people with straight Lyme. Just not as strong with multiple Cos.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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posted
Jessie, I was in the same boat, I was trying to decide for months if I should switch or not. My current llmd is the nicest person in the world, but unfortunately not getting me better and very unsure if he can. So I switched now almost a year into treatment.
Regardless I don't think I should have to even ask should I switch docs? Your doc should have confidence in your treatment and reassure you you are on the right path, mine did not.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
Thanks, Shannon. I wonder if I am seeing the doc you were? I'm in PA as well....
Posts: 342 | From Philadelphia | Registered: Dec 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If the LLMD is ignoring co-infections and not following Dr B-type treatment as a starting point, I'd have zero reservations about leaving to another doc. Don't waste ANY time. Every minute counts. This is no game. It's your LIFE on the line. No one should ever need to convince a doctor to do something.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If current doctor also offers no suggestions for liver or adrenal support (or has limited knowledge in that area),
IMO, you'd do better with one that does - or add a LL ND (as, really, that's another entire specialty and may be unrealistic to demand that any one doctor know everything).
LIVER SUPPORT & and several HERXHEIMER support links, too.
Some KIDNEY support detail, and
LL ND (naturopathic) link & RIFE links here, too.
See the PORPHYRIA link regarding liver conditions that can trip us up. In that are other links to the MTHFR genetic mutation (Methylation) that hopeful mentioned above. These conditions can create treatment failures if present and not addressed.
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This may help you determine if your current doctor is well enough educated not just about lyme, itself, but also about other tick-borne, other chronic stealth infections AND relating matters of heavy metal toxicity and parasites.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.
See TIMACA's thread. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One last note, a template of treatment -- though this would be individualized for each patient. Not all LLMDs follow this but they should each know it, in order to make their own educated changes where warranted.
Since this set of guidelines was written, there have been many changes so, again, this would just be a starting place. For instance, some LLMDs find Cryptolepis very helpful for Babesia. That detail was not available when this was written.
Does your doctor attend the ILADS conferences? If so, that bodes well. If not, does he make a point to get the DVD set and otherwise learn what all is going on with the ILADS researchers?
There may also be something in the self-care section that may be tripping you up. For instance, electrical stimulation - if used by a P.T. can cause a set-back. There may be other points that have been over-looked.
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
[this last link is not going through right now. Go to pages 27 - 30 in the original link above.] -
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Trying to cover all the bases, so went back to your post where you say:
1. "He won't treat concurrently (for coinfections) and his dosing is on lower end generally." (end quote)
Ask yourself first: can you body TOLERATE a combined treatment? And, has he explained the rationale behind addressing one infection at at time - or in a certain order.
Both matters, how much your body can tolerate - and a certain order of treatment - are perfectly reasonable. Though, if you aren't getting all the proper support, that could cause problems with tolerance.
2. "I'm starting to have speech and body jerking." (end quote)
That can indicate toxicity, &/or maybe the treatment is too much for your liver and kidneys -- or the support is not enough.
Is neurological support in place? B-vitamins. If you are vegetarian or vegan, TAURINE must be supplements. Otherwise, it can result in blindness and nerve damage throughout the body.
B-12 matters, of course, for those who don't eat meat but TAURINE matters much more.
HEAVY METALS must also be considered ALONG THE WAY. If not, they can cause this kind of reaction as they are released with parasites or other infections "die-off"
HERXHEIMER SUPPORT may need much more attention.
MAGNESIUM, is it enough of the right kind and divided 3 - 4 times a day, not all at once?
FISH OIL on board?
All questions I ask are rhetorical. No need to answer. Just check lists. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
here are some other examples. i asked him about detoxing and he said he doesn't think it helps! other than glut IVs, which he does in his office. Also asked about diet and he said ony thing i need to cut is sugar. i don't like either of these answers. I'm also worried about hypercoag because i hear all kinds of swooshing and he's isn't worred about that either. i take 400mg and that was my own addition. ii can't add more. i get immediate heart palps. i learned that the hard way.
thanks for all the resources!
Posts: 342 | From Philadelphia | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For Babesia, some tolerate this better and it's been much more helpful than previous approaches. Several (but not all) LLMDs are incorporating this.
Still, as is the cardinal rule with Babesia, combination treatment is essential. Never just one thing at a time. Rotation of 2-3 things is often helpful.
posted
Thanks!
Posts: 342 | From Philadelphia | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wow, both answers about detoxing and diet are alarming, actually. He does not sound like the typical ILADS LL doctor at all.
I would switch solely on his lack of approach to those two matters.
But, even as I would switch to someone much more integrative in method, I understand that liver / kidney support so the body can better handle detoxification -- and nutrition -- are not taught in medical colleges.
You need someone who has taken the time and energy to become further educated.
At the same time, we need to recognize that they may be reprimanded by their supervisors for going "outside of the realm" of what is taught in medical college or supported by medical organizations.
Still, there are dozens of "accepted" herbs, magnesium & fish oil that have good "press" even in traditional medical journals. PubMed has many. But it takes a lot of study to be able to work with such methods.
IMO, any doctor who ignores liver/kidney support is not a doctor who can help a patient with lyme -- unless that patient is very lucky, perhaps only at the beginning stages of the illness and has a fairly simple case (or easy "strain").
You can treat only as much to the degree as the body's organs of detoxification can work with you. The toxicity of lyme, alone, is a huge matter.
I hope you find someone who can help -- or piecemeal your own support plan and take from this doctor what good he can offer (if there are no other options).
In the liver support thread is also the ND thread where you can read ways to help yourself (if there are no other LL doctors available to you). Best if you can find another one, though.
Take care and Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You need to switch doctors and go to someone who follows Burrascano--dosages, etc. That's how I got rid of lyme, babs, and bart and so did my friends.
You can be treated for babs and lyme together, as you know. Why drag this out and you get worse?
There is a great doc in D.C. who will treat the way you want. After first in-person appt (take the train--very easy), you can do telephone appointments monthly.
Let me know and I will give you the name and all of the endorsements of this top notch doctor. Plus I will tell you in detail what treatment will be like.
Don't waste any more time. Many in your area travel to my area for treatment for the exact reasons you are naming.
There are docs who treat more aggressively in my area. In your area, they all seem afraid to do so.
Posts: 9931 | From Maryland | Registered: Dec 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
We are on our third LLMD since starting my DD on treatment in April 2010. You have to find the right person for you. I haven't burned bridges with the other doctors, just felt like we weren't getting what we needed at the time.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I switched LLMD's after one year for the same reasons you listed. He was a super nice guy but he only treated one infection at a time and treated low dose at that - as a result I wasn't getting better. Once I made the switch to another doc who treated aggressively I got much better and pretty quickly. DO IT! You'll be glad you did:)
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Thanks everyone! I'm looking forward to my appointment and really hoping it'll help me turn the corner.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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