has anyone found a lumbar puncture to be helpful for this?
heres my protocol..
any suggestions would be appreciated. thank you
Abx, Herbs, Anti-fungals-
HH Capsules 1 3x day (Zhang) Coptis Capsules 2 3x day (Zhang) Circulation Capsules 1 3x day (Zhang) Nystatin 2 3x day Minocycline 50-200mg day (discontinued may 13 could not tolerate) Plaquenil 200mg 2x day Bicillin IM 2x week (started May 16) Cumanda Enula
Detox-
Water Consumption 64 oz. minimun daily with M water added Burbur Tincture 10 drops 3-5x day (Cowden) Parsley Tincture 10 drops 3-5x day (Cowden) Pinella Tincture 10 drops 3-5x day (Cowden) Alpha Lapoic Acid (every other day)
Adjunctive Therapies-
Methylcobalamin B-12 injection daily 1ml Glutathione IV push 2g 1-3x week (*have had trouble getting done regularly initially, will being to do 2x week) Juicing Celery, Vegetables, etc.
Supplements-
Omega fish oil daily B complex 100 daily Wobenzyme (4) daily Cordyceps (1) every other day Glucosamine & Chondrotin with MSM (3) daily Digestive Enzymes (2) with meals Milk Thistle (every other night) Oral Glutathione (occasionally) Nattokinase 100 mg (1) daily
Ambien 10 mg daily for sleep Xanax .50 mg daily for sleep Neurontoin 600 mg 1-4 daily for neuropathy/neuralgia Percoset 10/325 4 daily for pain Synthroid- 50 mcg (Thyroid) Wellbutrin 150 XL (every other day)
Diet- No processed sugars, refined foods, etc. Consists mainly of whole organic foods.
Posted by SForsgren (Member # 7686) on :
For me, neck pain is usually related to a herx and gets worse when I find effective treatment in my experience.
Your program looks very comprehensive. How much Cumanda and Enula are you doing? How soon will you get to 4 Bicillin + Probenecid? Is that the plan?
How about FIR sauna to help support detox and muscles?
I wish you could get ART tested to see if something in your program is adding to your discomfort. Supplements can cause blocked regulation / stress which is often a reason for feeling badly in my experience.
Have you thought about frequency medicine at all like the KMT device?
[ 27. May 2008, 06:37 PM: Message edited by: SForsgren ]
Posted by Tincup (Member # 5829) on :
Wow! VERY complex.
I agree with the Better Health Guy and will add...
If you are having problems.. rather than take more.. maybe try less.
If it were ME... and it isn't... but I would quit all supplements... keeping in mind some of them shouldn't be taken daily and some should only be taken for a short time (6 weeks-example).
Once they have all cleared out of the system... if that is possible with all you've been doing... I'd guess at least a month...
Maybe re-evaluate your symptoms and IF needed start one at a time every two weeks to be sure they aren't the thing causing problems.
I know herbs/supplements are thought to be "safe" but they are medicines. Also they aren't made to be combined with things without major knowledge of the combo and lots of research studies saying they CAN be combined.. which we probably don't have because I'd bet my bottom dollar all these combo's haven't been tested, researched and documented... especially when combined with antibiotics.
Posted by luvs2ride (Member # 8090) on :
That really is a strong regime. The thing that absolutely helps me with my neck pain is a massage. A good one who knows how to find and remove the knots that seem to build up in me endlessly.
I get a massage weekly.
Luvs
Posted by Amanda (Member # 14107) on :
These are my worst problems as well. I'm sorry to say that nothing I have tried has helped, including sauna and low level light therapy, three different chiropracters, osteopath, accupuncture, massage, this list goes on.
I also have Babesea, and have been trating that for 5 months with Mepron, zith, and artemisia. Take Ceftin for Lyme (been doing that for a year)
I think I am going to ask for Bicillin shots, because I don't feel like I am making progress.
Sorry I wish I had some advice! I know its hell, I 've been dealing with neck pain and stiffness for a year....
Posted by djf2005 (Member # 11449) on :
thanks for all the advice guys.
i really dont think its that strong of a protocol actually.
i will cut back on the supplements, although they all serve a role.
i guess i will stick w fish oil, natto, and milk thistle and can give the rest a break.
i know it looks like a lot listed but really its not. (to me at least
scott-
thanks for the advice on the neck pain. mine doesnt seem to be herx related, just constant and changes in severity.
im up to 10 drops cumanda 1x day and 4 drops enula 1x day. am ramping up to the full dose.
will also be changing nystatin out for sporonox or diflucan as well as adding ketek to cover the bases.
i know the herbs and supplements i am taking are not causing the issue because the issue was there before i started taking any of this stuff...
hence adding more in an effort to find relief...
i do think its good advice about the supps tho, ill cut back.
scott when u say 4 bicillin what do u mean? 2 shots a week for 4 million units or 4 shots total? i am not familiar with the other product you mention but i am fairly certain dr h will be adding it.
the idea here is to cover all the bases rather than chase one infection around and then another, and then the other.
thanks again, any other advice is highly appreciated.
derek
Posted by AZURE WISH (Member # 804) on :
I get that too. If i didnt have a heating pad wrapped around my neck (which does make it more bearable) i would not be able to sit here.
I think for me the pain in my spine/neck/head is babs related.
Hope u find some relief soon.
Posted by DoctorLuddite (Member # 13853) on :
The neck pain you are having is referred from the strain being placed on the diaphragma sellae in the middle cranial fossa due to a variety of factors.
That is the structure that the pituitary gland, or master gland, if you will, passes through, and the relationship enables the pituitary, so long as it moves up and down with respiration, to mix its releasing factorswith blood in the pituitary portal circulation so that it can be carried to its target(s).
If you are giving yourself a B12 injection daily you are overdoing it unless it is very dilute, and in my experience, commercial B12 preps are very concentrated. They also have an aluminum compound in them added as an "adjuvant" to stimulate a greater immune reaction and ensure that you don't just develop a pocket of B12 at the injection site. If you are having a problem clearing metals, you will most certainly have a problem with aluminum.
Posted by groovy2 (Member # 6304) on :
DJF--
You have Babs ??
I see one abx for Babs in your treatment Plaquenil -- is this right ?
Babs Caused me most of my pain- 80% Joint- stiff Neck -Migraines cracking joints - chest pain low body temp ect -
Once I started Babs treatment - things started to get better -
Babs takes awhile to see any results tho but they do come-
I think the sleep problems are caused by babs also -
Babs Herxes are the worst --Jay-
Posted by djf2005 (Member # 11449) on :
dr luddite-
i dont have a problem clearing metals and this is methyl b12, its not the average b12 injection. i dont know if aluminum is added or not but i dont think its a problem. most prominent llmds have their patients use methyl b12 daily or every other day, it crosses the bbb, helps detox, and protects the cns. DR H (my dr) said i can do every other day which i guess i can bump, but there really is no way to overload the body w b12. it just excretes out whatever it cant use. ill check to see if aluminum is added, but i doubt it. its from a compunding pharmacy and the stuff is not cheap, it is not normal b12. thanks for the heads up
jay-
not sure if i have babs. testing is junk as you know. enula and plaquenil are what im using right now. enula is new but imo will be better then mepron or malerone in the future. babesia could be the culprit tho, who knows. ive txd b4 w mepron but not long enough.
as time passes, i will continue to add things to my px until all bases are covered.
like i said, i dont think its overkill nor does anyone get anywhere treating each infection one by one by one....seems like a vicious circle that never ends..
thanks again for the advice, i appreciate it.
Posted by InADaze (Member # 7711) on :
Epsom salt baths?
Posted by Alv (Member # 15192) on :
I agree with Scott if you can find anybody with MUSCLE TESTING to find out if the body wants them all .
I would include the adjustment.I have head so much pain on my neck and only the adjustment ( every week) now after 1 year treatment 1 time every 3 weeks.
I was doing OK and felt my neck pain today.So time to go to my chiropractic and adjust my neck , hips and back.
YEs if you had lyme for very long than your body is not unligned -even normal people is good to do adjustment 1time a month( sorry spelling ).
First he uses heating pads and that stimulates my neck and back with the pulsations ( from a machine) than after that he massages it with a handle massager.Than he checks for bubles.Buble Toxins around my spine -usully they are in the right side when my symtoms are .
Last year they were horrible.He would press them so hard( i would scream but had no choice) As while I was taking antibiotics my spine was burning and was so tight and my neck was in pain.
I would come home and go in empsom salt and hot bath tub and trieds to detox faster ...than in a couple of days I was better.
Saunas are better as helps you to sweat and get the toxins relewased in your muscle out through the sweat. Than he would adjust my neck , back , hips and finally on a sitting position would stretch my neck complelty .
30 minutes session and from walking in pain and when I get out and I CAN FULLY BREATH -BOY IS A HUGE diference .He also can tell if somehting is working or not as he can chek my flexibility and the muscle tightness.
Our muscles have been damaged and our joints also-when you kill the toxins are relased the and the spine is not staying on the proper way above the hips ( usully lyme efect one side more ) as LYME have destroyed the conections between them and we intent to have one side tighter than the other .
This throughs us off balance.
The slighttes movement will reflect a spine that is not strong and the neck comes with it.I have all the coinfections.My original pain started at my knee and than my neck .BUt no body found out was lyme.
Than years went by and my tightness on my spine ( it did not mater how much I excercized) ...ruined my spine .Neck and spine is the place that LYME loves. Go check with a chiropractic if you need adjustment.Again it depends how long you had lyme.I have been ofered some exsercises....but I can not stay without the adjustments.
Also some weight lifting helps to strengthen the muscle.That is what helped me.Also I try my best to sleep on my back.So the weight does nto efect my hips and shoulder that hurt sometimes LIKE HELL!
I hope you are not that damaged as I am !
Posted by djf2005 (Member # 11449) on :
yes, i also love chiro adjustments.
1-2x week, help me keep my neck from freezing totally.
cheers
derek
Posted by SForsgren (Member # 7686) on :
I would look at getting up to 20-30 drops twice a day and 30 drops of Enula twice a day. Probably easier to get to that on Enula than it will be on Cumanda which can be stronger.
1.2 million four times a week is what I was doing. Probenecid makes it more potent but check cross-reactions with other things you are taking.
I'd look to incorporate other options that can help without more ingested pills - KMT, etc.
Look at dental issues, food allergies (big) - you may be eating whole foods, but have you checked for gluten, etc.?
Posted by laura j (Member # 14257) on :
Is the pain in your neck worse on one side? Is your ear involved on the same side. Just wondering b/c that's what's happening to me.
Posted by Bill ATL (Member # 7817) on :
Derek...
You may want to focus on the Ambien. Currently, I'm experiencing a relapse of *what I believe to be* my old Babs symptoms. I am trying to manage through them until I can get to my LLMD.
All I have is Ambien (actually the generic Zolpedem) to try and get SOME sleep through the night. I find that even though I do take it, I still only get about 3 hrs of solid sleep, then get some sort or adrenaline rush or panic attack that wakes me up around 4 or 5...and then very restless sleep from there on.
I don't think the Ambien is causing that, but I am finding that if I don't get 7 or 8 hrs sleep, and give my body a chance to "work-off" the Ambien, I wake up with a bad headache and have bad neck stiffness most of the day.
Just a theory/guess at this point. It might just be the Babs. But, since I am not taking all of the other things you are, I wanted to share what I am experiencing with similar symptoms.
Posted by tickssuck (Member # 15388) on :
Ah yes....the neck, arm pain is unrelenting. Actually, my first Lyme symptom was nagging neck pain that spontaneously resulted in a huge disc herniation, had fusion surgery etc. It was 6 months after the herniation that all my other neuro symptoms hit me, like a brick wall.
I have Lyme and 3 co-infections. I am starting Babs tx in a couple of days and am hoping I get some relief from this pain. It is ALWAYS there, some days worse than others. I really haven't found anything to provide me much relief...ibuprofen puts a band-aid on it. I hope it improves, for all of us!
Posted by djf2005 (Member # 11449) on :
thanks again for the suggestions and replies.
scott- yeah the plan is to get up to the full dose in the next few weeks. hopefully that will help. wow you were doing 4 2 million shots a week? thats cool, i dont know if i can get that to fly though. right now its only two, well see though. my diet is gluten free, and i do have one root canal tooth i need removed so that could be a factor i know.
laura- yes its usually worse on one side and tied in w the ear and eye sometimes. it can move from side to side.
bill-
thanks for the suggestion abut ambien. if i dont take it i really dont sleep, but i wonder if i didnt if the neck stiffness would not be as bad. ill definitley try it.
thanks again
Posted by LymeCFIDSMCS (Member # 13573) on :
I'm taking a lot of the same things you are and I think the pressure in my head is getting worse. I'm pretty sure this is swelling in the actual brain. Did you read the article someone posted on another thread about celery and green peppers reducing brain swelling?
You might try juicing celery and green peppers. I am trying it this week to see if this helps. I have also found anti-inflammatories like turmeric to help sometimes.
I wonder too if you're just having a herx that's too much for your body to handle. I feel sometimes that that's happening with me.
Posted by sunshinyday (Member # 14337) on :
Cold Lazer treatments helped my neck and my head pain tremendously. Sometimes that was the only thing that would.
Gail
Posted by SForsgren (Member # 7686) on :
I'd get someone to test your tooth energetically with ART or the like before I would make a blanket statement to get a root canal tooth extracted. May be a good idea ... may not...
Posted by djf2005 (Member # 11449) on :
there are no art practicioners around here or i would... unfortunate. scott send me yours?
although im pretty sure its rotted and just needs to go. the upper was removed and since then the pain has migrated to the lower. its got to go.
the bicillin seems to be helping, i am making some improvements since posting this thread which is encouraging. cowden herbs also seem to be taking an effect. iv glut has an amazing effect as well.
tomorrow is my 2nd appt w dr H so all things considered theyre going as best as i could hope for.
thanks all, best of health
Posted by lymebytes (Member # 11830) on :
I just posted a week ago almost the identical thing.
I have seen my LLMD since, he says back of head pain is common with Lyme - especially if you have had any previous trauma, herniated disks, whiplash (that would be me)so mine gets very bad. Pain in the back of skull radiates forward and backward into my neck and shoulders.
I am on Bicillin LA and it knocks it out sometimes.
I had this symptom at the very beginning & then went on Amoxi/Biaxin and NEVER had it. Then it returned.
The penicllins follow inflammation and work well for this symptom in my opinion.
Wet heat is good..I also like Thermacare (neck) heat wraps that do alleviate the pain if worn all day as they are suppose to be.
Take care.
Posted by Anneke (Member # 7939) on :
Hello Derek,
I've learned lots and lots about this since it is my worst symptom as well.
I think the causes are very, very complicated. I had a very clear Lyme diagnosis - 3 x positive, so I know that is a factor. Antibiotics sometimes completely remove the head and neck pain, and my herxes ALWAYS have the pain increase 10x or more. Very, very hard to deal with, so I feel your frustration big time.
I think that there are other factors that can feed the pain - Luddite, I would love to hear more about your description. In my case, I have had several whiplash accidents and tumbles and kicks from horses. I think jaw/tmj issues can be a factor as well.
As Scott just said, be very careful before you go pulling the root canal. It is so easy to go up every single tree when you are in pain and ill, and there are decisions you make in desparation that you could really, really regret. The seemingly simple act of having the tooth removed is not completely benign. You could get dry socket, and even a chronic bone infection in the jaw if your immune system is compromised. If you do decide to go this route, please PM me first.
So, back to the headaches.. There are a handful of things that have really helped me, and a few others that I know from friends:
Depending on whether there is a swollen disc issue or not, using a heating pad over the whole neck and back of head at night and during the day can help. I have a friend who swears by it, and believes it has something to do with the spirochetes. It's worth a try. If you have an irritated disc, ice is probably your best route. Trying both can't hurt. Sometimes the simplist, cheapest solutions are the ones that work!!!
Muscle work has really helped me when the pain flares and feels completely locked up. I have a great physical therapist who does the trigger point stuff, and working all those muscles has really helped me.
Ultrasound has really helped me as well. I wish I could use one at home!! It really can calm down the muscles and inflammation.
All of these things help, but help temporarily in my case. After 2 years of still living with it off and on, and taking Vicodin as needed, I finally decided to go to a pain specialist. I HIGHLY recommend this.
I resisted this in part because I kept holding out for a complete cure, and I didn't want to be on something I didn't need, or didn't need every day. After years of going at the pain from every angle, I realized the picture was more complicated in my case than I thought.
So, pain specialists are the BEST. They have devoted their entire profession and training to the art and science of relieving chronic pain.
I decided with my pain dr., to go on a low dose opiod pain patch that I switch every 3 days. I had sooooo much resistance to doing this because of alll the bad press about it, the horror stories of dependence.
So, I educated myself about it. There's a great book called "The Truth about Chronic Pain" It taught the difference between dependence vs. addiction, and there is a big difference.
Being on an opiod is VERY safe compared to other untested and sometimes dangerous things people try. It's much safer than being on ibuprofen daily, which is hard on the liver.
In short, the Fentanyl patch gave me a much higher quality of life. I went from having head/neck several, sometimes every day of the week to 1 or 2, and sometimes less. During herxes, I have to take "break-thru" pain meds.
Please feel free to pm me about that as well.
Anneke
Posted by Anneke (Member # 7939) on :
DR. LUDDITE,
Can you please say more about your description of a cause to the pain? I would love to hear more.
Thanks.
Posted by djf2005 (Member # 11449) on :
anne-
thanks for the info.
can you elaborate on why pulling the tooth can be harmful? its harboring bacteria, so what else can i do with it?
thanks for all the tips, pm me w the tooth info if you like. thanks a lot again
derek
Posted by djf2005 (Member # 11449) on :
hey all quick update-
just got done with dr h appt, went very well...
bicillin in working well, youre right scott, were upping to 3x week, then 4
cowden and zhang are working well also, we will re access the protocol in a month.
iv glut is helping, did another 2g push today.
i gotta say, dr h is expensive, but hes worth every penny.
cheers, best of health to all.
derek
ps- anne- the head and neck are feeling some better, and i was able to schedule an appt w a llmd pain clinic dr who is only 30 min from dr h so i will be able to go to both when i make the monthly trip....
things are looking up for now, lets hope they stay that way.
Posted by laura j (Member # 14257) on :
By any chance is your pupil on that side more dilated than the other? Does it hurt in the hollow of your neck in the back on the same side as well and is it more painful if you press on it?
Posted by djf2005 (Member # 11449) on :
yes left side havent noticed the pupil.
the hurting in the back of the neck in the hollow is bad, have that too.
no fun...
hope u feel better soon
Posted by Patti C. (Member # 14516) on :
Hey y'all,
great reading all of our posts. I too have the dreaded neck stiffness/pain, unrelenting ha's/migraines. Just diagnosed after 8 years of Hell, and trying to get a port "installed" but my LLMD is out of state so I'm trying to get a local yocal on board (UT) so I can get things going.
Anyone else go through that? I'm IgeneX/CDC positive for Lyme, but my LLMD is sure I've got Babs too. I'm allergic to cephalosporins so he's putting me on doxy, plaquenil and something tbd.
Will this help the neck pain? My worst pain is on the same side with my stabbing inner ear pain. Anyone else with this same story?
thanks! Patti
Posted by djf2005 (Member # 11449) on :
patti-
no one for sure can tell you what will help your neck pain, although abx treatment sounds like a good choice for now.
why are you allergic to cephalasporins?
often times "allergic" reactions and herxes are mixed up and misunderstood.
i am supossedly allergic to penicillins, because i get a "rash". this rash is merely a herx reaction and in fact penicillins continue to help me in my treatment.
either way, some sort of abx tx should help you.
make sure the doxy is at least 400 mg day to cross the bbb, the plaquenil will help w babs and lyme cysts.
its a long road, but youll feel better in the end.
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