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Posted 2/14/2016 5:48 AM (GMT 0)
I believe I picked up Lyme in Aug 2014 and finally saw a LLMD back in Dec and started treatment then. It's been 2 months now and really don't feel any better and as of late the ringing in the ears, headache and over all off feeling in my whole body has been worse. Should I notice a difference after 2 months? On top of that developed painful hemorrhoids due to constipation due to Lyme. Things just keep getting better.
Posted 2/14/2016 6:08 AM (GMT 0)
hi Carp84. No, after 2 months of treatment i was more miserable than before treatment. So NO, for chronic late stage lyme, 2 months of treatment is not only not enough but it brings you closer to the point where u start to despair because all your symptoms get worse. Even after 5+ months of antibiotics i was in really bad shape, but after that it started to get better.

The ringing in the ears and headache are signs of toxins in your brain, it's called a herxheimer reaction. Have a look here and search the page after the word "herx"
"New to lyme?" - www.healingwell.com/community/?f=30&m=1606610
Also here www.tiredoflyme.com/the-herxheimer-reaction.html

You need to detox more often, on that new to lyme page you will find info about the detox methods used, and also that website tiredoflyme has a pretty nice page about it
www.tiredoflyme.com/detox-methods.html

For constipation, you should try to increase your vitamin C intake, since it is a laxative, try 1 gram or more. Magnesium is also laxative in some forms, so you can try magnesium carbonate. It is better absorbed than magnesium oxide, so has less laxative effects, but you get some magnesium inside your body too whereas the oxide is just a laxative with very little usefulness as absorbed magnesium. You need both magnesium and vitamin C supplementation for your lyme support treatment, that's why i recommended them.

I had some small problems with hemorrhoids too and because of constipation from lyme too (never had any problems before). i found the best treatment is propolis suppositories, much better than the standard treatment that the GI doctor gave me. I cannot believe how useless all these prescribed treatments are. These propolis ones have resolved the matter in one week. You can find some on amazon www.amazon.com/Suppositories-with-Propolis-10-pcs/dp/B005IZOB1Q I order them from a local naturopathic shop and it's a different brand, but the same composition.

Post Edited (mpost) : 2/13/2016 11:14:55 PM (GMT-7)

Posted 2/14/2016 6:09 AM (GMT 0)
What sort of treatment are you on, and what protocol does the LLMD follow? Treatment is varied, and you could be herxing. Do they have you on a detox regimine? The biofilm breakdown is toxis and will make you sicker, os you really need to be detoxing your body regulary. I got support from a Lyme support group and one thing that is clear that it could get worse before it gets better in many cases. I would recommend you see if your local area has a Lyme support group, I found mine on meetup.com.
Posted 2/14/2016 9:38 AM (GMT 0)
I'm in the same boat your in except I don't remember getting bit by a tick. I got sick in Sept 15..started treatment November almost 12 weeks into treatment. I feel worse then before I started and have symptoms that I never had. I also have the ringing in my head...headaches...vibrating feeling in body...insomnia (wake at 3am) and the newest is anxiey😕it's horrible. I sometimes feel like I'm being tortured. A good friend of mine went through it and said she started feeling better after 5-6 months. It's just terrible....
Posted 2/14/2016 3:14 PM (GMT 0)
Thanks for the feedback and makes me feel a little less alone knowing I'm not the only one...not that I'm happy others have these though. I tell family and friends how I'm feeling and seems like most of them say they know how that feels when really they have no clue how it feels and that these headaches and body aches aren't your normal aches and pains and so on. I do take epson salt baths at least 5 days a week and do need to get more lemon in my water. Here is a list of things that Im on:
Armour thyroid
Artemisinin
BLt
Vit C
Coconut oil
CytoQuel
Doxycycline
Ex Tox 11
Extra Virgin Olive Oil
LDN
Magnesium
MitoCore
Prescript Assist Pro
RibosCardio
Tuna Omega 3
Vit K2 with D3
Zypan
Posted 2/14/2016 4:20 PM (GMT 0)
mpost gave you some great references for detoxing and those are so very important!

The easiest is dry brushing. Really a no brainer and does not take time.

I keep organic lemon juice in my refrigerator an when I get a glass of water I just put a splash of lemon in it. Less hassle than cutting a real lemon and just as good.

Honestly I think you will feel better with detoxing and don't just stop with 2, see how many you can do. It will make all the difference in the world.
Posted 2/14/2016 4:30 PM (GMT 0)
Actually, some do feel better at the 2 month mark, but many don't, especially if they are not detoxing enough for their body. When I reached the 2 month mark is when I really believed I was going to survive it all - I had started to finally see some improvements for the first time in decades. There was actually some question as to whether I would survive or not.

Carp, you really do need to address the constipation because that is one of the main detoxing pathways - through the bowels. If we aren't eliminating the toxins fast enough through there, they will get reabsorbed into the blood stream and recirculate.

What all are you doing for detoxing? The Ex Tox could actually be creating more issues than solving if you have gene mutations that make it hard to detox. They use folate (folic acid) in it, not methylfolate. Quite a few of us need to use the methylfolate.

Whenever a person has been in treatment for what is considered a short amount of time (weeks or a couple of months) and they continue to feel worse, that's a sure sign of their body being overwhelmed with toxins. This can escalate into a dangerous situation for some, but for most of us, it just makes us really miserable and wish to stop treatments - which of course we can't do. Increasing the amount of detoxing, and if that doesn't help enough then being evaluated for the MTHFR gene mutations are how we overcome these issues.

The other possibility is that whatever protocol you are currently using just isn't effective enough for you. We do see a lot of that. Sometimes finding the right protocol to use can be the hardest part!!
Posted 2/16/2016 3:15 PM (GMT 0)
I did have another appointment yesterday with my LLMD and have to say that I do have mixed feelings with this Dr. She has started me on a whole another group of supplements and changed which antibiotic I will be on. A lot of the medical things she has to say goes right over my head and with all the supplemts that she has me on and how the clinic wants you getting them from them has me questioning if Im being taken to the cleaners or not. They don't seem up front with the cost of the supplements and not up front with the cost of a visit. Its costing $1100+ now for each visit. Is this normal price range? Also now finding a lot of bad reviews on this clinic like 3 bad to 1 good. I guess just don't like the feeling of not having trust in who I'm seeing now.
Posted 2/16/2016 3:24 PM (GMT 0)
The cost of some LLMD's appointments are "up there" and I know one I called charges something like $600 for the followups.

I know many LLMD's sell supplements and some stuff is only available through doctors' offices. I would hope most of the supplements you're taking are available OTC.

I don't see why you have to buy the supplements from the LLMD - usually, that's the most expensive way to do things. Surely the LLMD would understand you wanting to buy elsewhere.

It's very common to have our treatment changed as we move forward. Now, did she add another group of supplements or will they replace what you've been taking?

I can tell you that I continued to add supplements throughout my treatment because it just made sense to me. Our bodies take quite the hit with these infections and fighting them takes a LOT.

Bottom line, you need to trust your doctor - if you don't, I suggest finding another one.
Posted 2/16/2016 3:50 PM (GMT 0)
I so agree with this =

cd3764 said...
Bottom line, you need to trust your doctor - if you don't, I suggest finding another one.

Posted 2/16/2016 4:15 PM (GMT 0)
I'm never comfortable with a doctor that insists I buy my supplements through them or someone they name. I'm intelligent enough to find resources, unless they are just being helpful.

I use 2 Standard Process products and my doctor sells them along with other things. I was told up front that I could get them elsewhere, as she carries them just for her patient's convenience. What I discovered is that I can get them from her cheaper than anywhere else that I have found, so I continue to buy them from her office.

She also sells one of the supplements that I take - tryptophan - but it's much more pricey through her, so I buy it online. She asks me every time I see her if I'm still taking it, but never asks where I buy it after the first time when she wanted the information so she could pass it on to her other patients.

Like CD said - Bottom line, you need to trust your doc or find one you can trust. This holds true with a LLMD maybe more so than with regular MD's.
Posted 2/16/2016 11:13 PM (GMT 0)
LLMD's are quite pricey mine is $500 per visit. he sells all the supplements but they're pretty much at cost and he doesn't push them.

i was diagnosed 6 months after first symptoms and it took me about 4 months to start feeling better. i hate to say it but that's not the tough part its getting to 100% symptom free for any length of time that's the challenge. for me i'm 12 months into treatment and still not anywhere near it!
Posted 2/19/2016 3:01 PM (GMT 0)
I knew it would be expensive but didn't know it was going to be this bad on the wallet and think it's a down right shame that us with Lyme or a lot of other health problems for that matter have to have every dime we have sucked out of us in a effort to get back close to normal or just to live. I can't image the cost to you who have been fighting this for along time. I'm going to go to my next appointment in April and will have more questions and do more research tell then and if I still feel uncomfortable will look for a different LLMD. I think some of the trust issues I now have with Dr is from all the Dr I have seen over the past 1.5yr that more or less told me there is nothing wrong with me or all the different meds for heartburn and a few other things that some of them thought was causing all my problems.

Here is a list of things she put me on from the last visit:
Alicia
Armour Thyroid
Artemisiacom
ATP Fuel
B-6
Berbers Formula
Biaxin XL
Black Currant Seed Oil
Buffered C
Cruciferous Complete
CytoQuel
Difucan
Hepatoven
Intestin ol
Ltires
Magnesium
Methyl B12
MitoCore
Premier HCL
Prescript Assist Pro
Reishi immune
Renafood
Tuna Omega3
Vitamin K2 D3
Zinc Chelate
Posted 2/19/2016 3:13 PM (GMT 0)
You're on some really good stuff, Carp84! I'm quite impressed. My ILADS-referred LLMD made NO supplement recommendations and told me he trusted my research-based decisions. That wasn't helpful

Much of the stuff you're taking is for detox, immune support and include the usually-needed supplements as well as the oft-needed thyroid hormone. I think your LLMD crafted quite the comprehensive protocol for you.

Stuff like Artemisinin, ATP Fuel, B6, Black Currant Seed Oil, Buffered C, Itires, Magnesium, MethylB12, MitoCore, HCL, Prescript Assist, Rheishi, Renafood, Tuna Omega3, Vitamins K2 and D3 as well as zinc chelate can all be bought online.
Posted 2/19/2016 3:39 PM (GMT 0)
Yes I did check into where to get supplements and there is a place right by me that I can get a lot of those and will safe some money there and just about all of them are the same brand as well. Will look for online prices as well. Thanks
Posted 2/19/2016 4:31 PM (GMT 0)
I agree with CD - that's quite an impressive list! Do check into buying them elsewhere to see if you can save any money. Then if you are asked at your doc's about what you need, just say that you still have enough -don't even mention that you are buying them elsewhere unless you are asked point blank if you are.
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