Topic: Need some Help / Advise.. Can't continue to Treat this Way.. Crash Everytime !!!
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I'm not quite sure what happened this time folks and I ask that you don't beat me up, but offer me support. I am doing everything that I am told to do from my Dr.
Many changes were made on my last LLMD visit.
Rocephin IV daily was unchanged IV Z-max every other day increased to every day. Mepron , increased Plaquenil 2 x daily Ariminisin started 2 x day Flagyl daily restarted
So 3 new drugs were started and 2 drug doses increased. Given my sensitivity to meds in the past I didn't understand this, but at the same time I was thinking maybe these new meds would finally get to some of the stuff that was causing my worst symptoms. WRONG !!! I couldn't have been any more wrong...........
The visit prior to the one above, I had to stop the Flagyl after 5 days as I was having terrrible headaches, crazy anxiety, and crying jags. It took me 5 days to recover from this after I stopped the Flagyl, so 10 days wasted.
So I'm 4 days off today of everything and still feeling horrible.
I only see 2 scenarios here:
1: I'm just a horrible detoxer 2: I'm so loaded with the bacteria that I'm just killing too much at once.
In my last post, I said how well I was tolerated the new regimen 4 days in, but low and behold, on the 5th day, I began to crash, and by day 6, I put everything on hold.
The crying and Anxiety, Nervous system issues I have had for so long came on with a vengence.
It has been so bad, that I almost checked myself into the hospital. Not looking for a psych ward, but possibly to Neurology. Certainly, no one can argue a SPECT scan showing Hypoperfusion, along with an ANSAR test showing Sympothetic Overdrive. Previous high WBC counts and low grade fevers all documented from Hospital labs, now resolved with Abx., which in the past were told were from stress.
Hard to say, as I woke up terrible again this morning, but now that I'm up and have taken morning Klonopin and low dose Percocet, my mind is a bit more intact and the torture has eased up a bit.
This is so crazy. I get a few days where I'm able to take my kids out to a movie, the mall, etc. Then med changes are made, and I sit in a chair all day and feel like I can't move. That sympathetic overdrive comes on like there is no tomorrow and it is so freaking uncomfortable. Sleeping or taking a nap is out of the question.
Imagine drinking 40 cappuccinos. This is the only way I can describe what I feel in my body. So, I cry as I can't get any relief. I don't see any of this as a true depression. If I stabbed you, you would cry, but it doesn't mean your depressed. My body is being slammed with out of control symptoms and I see this as why I cry.
Back to the hospital thing. I'm not looking for someone to say I have Lyme as I know this wouldn't happen. But no one, but my LLMD has seen this SPECT scan or the ANSAR test, which is well respected as it was developed by Harvard and M.I.T. Even though my Heart Rate goes up when standing, the POTS diagnosis can be thrown out of the window as far as I'm concerned. Why ? Because I am symptomatic while sitting while POTS patients arn't. My blood pressure doesn't drop when I stand up, only my heart rate goes up. Lastly, my heart rate doesn't go up too much like it did when they told me I had POTS. It would go to 160 and now just to about 100 with no intervention but Lyme treatment. I'm still on the same Beta Blocker at the same dose.
I have an appt. with an MD on Monday who specialized in Lyme, but has a detox protocol that he claims will help me treat. He says I will Herx from the Protocol at first, of course nothing with this disease can be simple, but he says after a few weeks I should be able to tolerate the meds much quicker.
So, in the end, the changes in the meds was not a good choice, but this is hindsight. I hope the Detox doc. can work with my LLMD to sort this out. Now I have to wait a few more days it seems to recover from this Herx. If I don't slow down or things don't change, I don't see myself ever getting well.
Again, I was only following the Dr.'s advice. I did nothing on my own.
A long time ago, I was bashed by others here b/c I was stopping and starting. Early on, I was doing Salt/C and Rife and was told I needed Abx to get well, so I made the switch. So now, I'm doing everything that everyone said I should be doing and nothing has changed in the big picture.
Sorry to rant and rave, but I'm just sick of this crap. My two kids, 7 and 9 are my responsibility 100%. I had some help in here from a college girl, but she is now gone. Kind of hard to treat and try and raise to kids on my own. My X doesn't even call my kids but maybe once every 2 weeks. My kids really don't even want much to do with her b/c she abandoned us. She has her own problems, so it's best. I have put ads up locally to give free room and board in exchange for help with my kids, which is what all of this comes down to. They are perfect kids, Straight A students. My son is in GT. They are just angels and my life. All I want is to get them to Disney World and have fun with them. Instead, they see me in torture, which if I ever get well, will make them stronger. But this just isn't fair.
Ok, so post your thoughts, but don't beat me up. I was skeptical to post this b/c I know some would come along and say you should be doing this and that. I can't take medical advice from anyone here as some say to do this while others say I need to do that. I can't do it all, and although you all mean well, no one knows for sure if this is a magnesium issue, or I'm stressing my liver, adrenals, etc.
So, why am I posting this ? I honestly don't know. Maybe just a pat on the back. If you live near Carroll County, MD, perhaps I can get some local support. I live in isolation, when I was such a people person. When I'm herxing, I can't sleep, but I sit in a chair all day suffering looking at the walls. This is no life for me or for my kids.
For now, no Hospital, but I really want to get covered by the media. I appear to have this a little worse than most here, or so it would appear. I'm as strong as they come mentally. I was a MD state wrestling champion back in my day. I was a weight lifter later in life, benching 350 pounds. Nothing could get me down. When I lost my 39 year old brother to lung cancer, my world was turned upside down as we were best friends. That when I got sick with this crap. Some say, my immune system crashed and let this out. My brother was misdiagnosed with lung cancer for 4 years. His story was covered by the media. Here is the link for that story: . http://www.wbaltv.com/video/9278311/index.html
He got a few million in his case, but in the end it didn't matter. Kind of ironic that I would get misdiagnosed in my own case.
Ok, I'll stop typing here. Check back later for your thoughts.
Gary
** edited to remove dosages, please see Loub's note at the top of medical questions **
[ 07-18-2010, 09:23 AM: Message edited by: sixgoofykids ]
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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I am so sorry for your suffering. All I can say is I can 100% relate to what you are going through. Being stuck sick and in bed for 3 years and with 2 children of my own that I cannot take care of. I understand. I don't know what else to say because I am still looking for my answer as well. Do what you feel is best in YOUR heart... You have to follow your intuition and your heart and go from there.
You will get many opinions here.. but everyone here has their own story... Everyone here is well meaning.. but we are ALL different.. different makesups, genetics, thoughts, childhoods, etc.... What one did may not work for the next..
I hope you fund relief soon!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
It is me.....thinking of you. It is such a terrible disease. Just remember we all have these doom days....I was feeling it last week. Taking the week antibiotic vacation was okay for me. Your kids adore you. You will get better. It is just taking some time. Remember I have been in treatment for a yr and just starting to see neurological clearing . Take care. Thinking of you. Will text u later.. Green Tea Girl aka Gatorade Girl
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Have you given any thought to perhaps the medication you are taking aside from the antibiotics are what could be causing some of your neurological problems??
Maybe take a closer look at the meds you are taking (not abx, but klonopin, percocet) that could be affecting your mental state, as well as the physical pain/agony.
I only say this because a month's worth of klonopin (very low-dose) nearly did me in and then the withdrawal syndrome nearly killed me when I tried to come off. The 40 cups of coffee feeling really could be from tolerance to klonopin...not sure if you take any other benzos or psych-drugs in addition to klonopin?? I had this when I was trying to come off klonopin - trembling, felt like I'd had tons of coffee, would sit and stare at the wall and could not move, mental state just gone (these were not my original lyme symptoms). Now that i'm off klonopin, I'm TONS better mentally and physically.
I know this is a horrific disease aside and some have to be on these drugs, but sometimes we can take meds trusting our docs, but could really have adverse affects for us. It sounds like you are very sensitive to drugs like I am.
Just thought you might want to explore that option. Best wishes for answers and recovering your health!! I, too, have 2 boys, but mine are 3 and 5 and my dream is to take them to Disney as well...AND have fun while there!
Posts: 618 | From NC | Registered: Oct 2009
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lyme in Putnam
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Member # 11561
posted
Hi Gary,
I can't stress enough how sick this is. Had a few days of ok, back to myself and since Sunday, have been in a really bad place. I hate to say one day at a time. I don't want to hear it as well as you, but what choice do we have. I'm so sorry about your brother and the situation you have with the kids. Stress unleashes this beast. I take klonapin daily (not much) but it helps to make the day go by. I don't have detox advice, except lemon water for me that I do, but you had to post because you had to. Vent, I feel I ask stupid questions all the time and complain, but I don't know where to go. My son is 15, so he knows how here and not here I've been. I've tried, but you do the best you can. I'm sure you are under the circumstances and your kids know how you try. Feel better.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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janet thomas
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I suggest you look at the topic below-how long does it take for cysts to reopen? TF has a good point- a plan is needed.
Maybe you are throwing too much at the bugs- the die off is HUGE and ,IMO, monster herxes are not productive.
Xanax helps me a lot with anxiety and sleep whereas klonipin didn't do anything. We're all different.
I'm beginning to think it may be easier to tolerate and more effective to treat one pathogen at a time.
I also suggest you do a search on primaquine.
Hang in there, the only way out is thru it.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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janet thomas
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posted
Also I sent you a PM - the treatment liz 28 did. She's not here anymore, she got better.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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janet thomas
Frequent Contributor (1K+ posts)
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posted
Here's a link to a Lyme book with some abx info-
I see you're from DC- I/m not sure but I think the author may practice near there.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
Prayers to you, Gary.
Posts: 246 | From south florida | Registered: Mar 2010
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Everytime I post how well I'm doing, I crash.
Now, I post how bad I'm doing and start doing better.
This entire thing was one big gigantic herx, or so it appears.
I'm coming out of it today w minimal crying. Anxiety getting better. Chills resolving. Head clearing up. etc.
It is clear to me now that I can't detox quick enough as I am treating. I don't think it even has to do with my bacterial load.
I meet with a detox Dr. on Monday, so I will see what he has to offer. I know his treatment is all supps., but it is aimed at reducing the Herxheimer reaction and not killing Lyme.
He did tell me up front that his detox meds / supps will make me Herx for the first mos.
Nothing comes without a price with this disease.
Can't wait to stomp it out for good one day.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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seekhelp
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Member # 15067
posted
I hope you get MANY good days eventually Gary. Good luck with your appt. I'm very interested in hearing what is recommended.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I am so sorry. That is a VERY tough protocal. I personally do not think I would handle that well either.
I am not sure what to tell you. I too would think it was herxing, especially while increasing the zith and flagyl (two tough drugs).
Obviously two ways to go about 1. power through 2. cut down temporarily until things settle. Resume flagyl once you feel better.
While I have not personally done flagyl, I have heard it causes a lot of emotional herxing.
I'm new so I probably cant give you the best advice. I'm sure "senior members" would better know how to handle it. Regardless, I am sorry you are having a difficult time and please know we share your struggles.
Hubby was very happy to hear that you were doing better as he just spent a week in the hospital.
From reading your posts it seems to me like you crash every time you try to treat babesia aggressively.
Other than suggesting something like redroot for lymph drainage and lumbrokinase or other systemic enzymes to help with bloodflow I can't think of much else to do.
It is beginning to look like hubby has another mystery protozoa which is what causes him to crash on tindamax. Not sure what else I can do for him -- but most likely will try the herbal route again soon before attempting any malaria or parasite meds. He usually tolerates herbs better and can take high doses of them. Maybe if we can knock the load down first then we can transition to meds to get rid of the infection.
Hang in there.
I know you used to doubt your diagnosis. By now your response to meds should have helped you believe that you really do have lyme and babesia.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymetwister
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Thanks everyone,
Bea, sorry to hear about your Husband. Please send him my regards.
I'm curious, when he goes into the hospital, are they trying to help his Lyme or do they disregard this and just try and help with his symptoms as if they are part of something else ?
Just curious b/c it sounds like he gets the ativan and other treatments that help Lyme, but we all know that Medical people don't give us any credence.
No more doubting the diagnosis after this last Herx. By far, the worst one and most confirming of the disease.
I am still in it amazingly.
I am waking up more drenched now then ever and I am off all meds for 5 days now. Was feeling better last night, but woke up feeling confused and again, my thick pillow was drenched completely. But only my pillow and neck. Not the rest of my body. I have had some sweats from time to time, but nothing like this.
Cried my eyes out for first hour out of bed this morning, now coming around. I feel the toxins real bad. As if they are stuck inside me. Will address all of this with this detox Dr. I see monday. Then back to LLMD on Tuesday.. Busy week ahead...
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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djf2005
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posted
1- Detox.
2- Take treatment slower, although be sure to continue it.
3- Become your own Dr. advocate, you will need to as you will most likely find no one Dr. will the be the answer to all of your issues.
4- Detox.
5- Detox.
Practically, get the HLA testing to start, it will give you an idea of what your body is doing. There is SO much beyond abx regarding Lyme and any chronic illness, I would suggest looking in that direction.
The extreme anxiety is one of 3 things: infection, toxins, or metals. Metals could very well be it, but toxin overload is most likely the cause. If you already genetically cannot detox, and are taking toxic meds as well as creating more neuro toxins by killing more bacteria all at once, well; that's a recipe for disaster.
I have experienced everything you have describe. Sadly, it just does not go away on it's own. You have to be the one to take the steps to remedy this, as most conventional MDs, LLMDs or not, will just throw RX meds at what is an already extremely stressed body. NOT the best idea for the moment perhaps.
Get assessed for detoxing, get a provoked urine analysis for metals, and get to a well qualified ND if you need help in the above.
Hang in there. Taking responsibility for what is occurring is scary, and intimidating. But, through this means, you may find the best state of health possible. (or, go see DK)
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
djf2005
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posted
Also, percoset does not come w/o a price, as is the same for benzos.
I am a proponent of pain management for sure, and if it helps, great.
It will usually make the crying spells worse as well as further confuse the picture. Unless you absolutely need it, I would steer clear of it if at all possible.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
After many years we finally lucked out and found a PCP who will actually call our LLMD and pretty much does whatever the LLMD suggests.
This last hospitalization was mostly about getting hubby stable from a neurological perspective. We did add a seizure med which very much concerns me -- the Topamax has a pretty bad side effect profile including warnings of suicide danger etc. But for now that combined with the IV Rocephin seems to have lessened brain inflammation and encephalopathy symptoms.
Our PCP doesn't really think hubby has chronic lyme but he does believe the recent bloodslide from Clongen and thinks Steve has some unknown infection.
Derek has given you lots of good advice. In my opinion it is not a sign of distrust in your doc to add in meds slower than he has suggested -- you have to learn to trust your own instincts and pay attention to any signs or symptoms that you are doing too much too quickly. Everyone wants to be well tomorrow, but it just doesn't work that way. Slow and steady will get you there eventually in my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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Derek, who ordered your HLA testing results? If you don't cry a bit or have much emotions, does this mean you have no TBIs. I don't understand that piece a bit.
Bea, I REALLY hope someday they find out how to cure your husband. My gosh has he gone through hell.
Where on Earth does anyone from PCPs who listen to LLMDs? Crazy. i thought we had a better chance of hitting the lottery really.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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springshowers
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Gary
Good Luck with the doc who will concentrate on DETOX..
I think you will find when you find the right balance of killing and Detox that your body will settle in to it and these UPS and DOWNS and horrible herxes will reduce down to nothing.
It happened for me after 11 years of darkness and suffering and nothing seemingly working.
The detox has to be aggressive enough to get ahead of the killing and then once you do that you will KNOW It.
It was key for me and I still do DETOX as NUMBER ONE thing and what I concentrate on to stay feeling better and sustain progress....
Do not take it lightly and do not over do it either. Take your doctors advice. You will feel worse yes but if you take his advice and follow it you will soon feel better..
Again do not over do it and take the advice and multiply it thinking more is better. Because More is not always better and rarely better.
Its that balance and I am glad you have a doctor to direct you in the process.
Good Luck to you in that process and I think your on the right track ...
Also of course along the way keep track of what is working and how it works and in the future you will have those tools to use to keep your body in that right balance so that toxins do not build up again and you get back into that unbalanced state.
Keep us informed on what your doctor has you do and how to do it as we all can learn from one anothers experience.
Blessings and Hang in there.. I believe you soon will be finding what works for you.. you have been getting closer and closer....
Sadly it takes trial and error and tilting to one side and then the other as you balance that scale
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
My heart goes out to you. I a so sorry that you are going through such an awful time.
Rocephin 2gm IV daily was unchanged IV Z-max 500mg every other day increased to 500mg every day.
That's a big jump!
Mepron 1/2 tsp per day, increased to 1tsp 2 x day
Another big jump. We went from 1/2 t per day, to 1/2 2 x day, then 1t 1 x day and 1/2 the next, then after 3 months, she is finally up to 1 t 2x day.
Plaquenil 200mg started at 200mg 2 x daily
Another big jump!
Ariminisin started at 200mg 2 x day
Flagyl 500mg daily restarted
I am new here, and only have been in the Lyme world for 5 months. I know that if my daughter starts out with a full dose of anything, she has a lot of the symptoms you describe. Doubline the Zith, adding plaquinal and basically increasing the Mepron by 400% is alot. I wonder how you would do if you increased by one drug at at time until you got stable, and then start on the next?
I know you didn't want advice, but I thought I would share what has worked for my daughter. I hope that you find out what will work for you and that you will begin to see the light at the end of the tunnel. Take care!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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lymetwister
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It's not that I didn't want advice, but I didn't want to get slammed by some who would say how dumb or stupid I was to do this.
In the past, I tried to treat this on my own and everyone kept telling me to get an LLMD and listen to him/her.
So this is what I did.
Whatever happened to me is still happening. I can't seem to think clearly at all. I feel toxic as can be and today is day 6 off all meds. I have never felt like this since treating. I am scared out of my mind.
I'm just staring at the walls all day and taking Xanax as needed to deal with it. My brain feels swollen or inflamed. Something is definately not right. If I come out of this, I will be so ever grateful.
The fact that I can sit here and type this is a complete miracle.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Do you have any lactaid ringers? I would do them on your days off to help flush e erything out. I think it would make you feel better. Are u doing flagyl iv or regular ?
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Tracy9
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"If you don't cry a bit or have much emotions, does this mean you have no TBIs."
No...it does not!
Some people go "numb"...feel depersonalized, have adrenals that are so crashed they release little cortisol, leaving them feeling numb, not reacting to stress, feeling no sense of "fight or flight", feeling almost emotionless.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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lymetwister
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posted
That would feel good to me Tracy. Guess my adrenals are working just fine and then some.
I'm afraid to jinx myself, but I think I'm coming out of this Herx. Everytime I post I'm doing well, the next day I'm crashing. And vice a versa. Either way, it's my update for the moment and I will never hit the meds that hard again, or even close.
I don't want to think what would have happened had I done another dose.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Just wanted to offer a thought. Have you ever been tested for pheochromoytoma, usually a benign tumor of the adrenal glands. You have alot of symptoms which sound like surges in catecholamaines. Also can cause incredible headaches.
Would post a link to the symptoms, but I am not too computer savvy. Just google it.
Testing involves a 24 hour urine and blood test for catecholamines. If positive then further testing is warrented. I have a patient who has this and your symptoms sound similar.
Just a thought, you have lyme and company, but something else? Feel better, Grace
Posts: 113 | Registered: Jun 2002
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Hi, I meant lyme and company and something else! Also this disease causes huge surges and crashes because the tumor secretes excess catecholamines so you get a surge and then the secretion stops so you crash big time. Grace
Posts: 113 | Registered: Jun 2002
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lymetwister
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Been there done that Gace24. I've had the million dollar work up. At 80% coverage, that leaves me $200,000 in debt :-) Kidding, but not really.
I've had every test known to man. I have seen over 50 or more specialists over the past 3 years. As an RN, I researched and sought out specialists in many many fields. Sometimes 2 or 3 or the same.
My infection must be in the HPA axis. Thats all I can come up with.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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lymetwister so sorry that you don't seem to get a break in this battle.
i don't know if you are doing this or have the energy or focus to manage it but i hope you are charting your experiences.
i am not great at this myself but you have been through so much and it can be hard to remember what did what or how long you were on something etc. over a long span of time.
its just a thought that ...it could be helpful to your LLMD or Detox doc to take a look at the mountain of things you've dealt with.
when i go in and my doc asks me how i am doing with pain or fatigue its diffcult for me to pick out the shifts it all just feels terrible all the time but if i look at my day to day that i track sometimes there are patterns etc that i wouldn't have noticed.
did you ever test for HPU? could be another key to the detox pathway.
wising you the best.
Posts: 161 | From sonoma county | Registered: May 2009
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MariaA
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Gary, i'm with bea here- I'm guessing that babesia treatment is an issue. Plaquenil caused me to have tons of new babesia symptoms when our doctor started me on it. they eventually subsided, as though it were a herx either from babesia or lyme somehow being affected by the babesia treatment.
-------------------- Symptom Free!!! Thank you all!!!!
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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djf2005
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Seek-
The HLA testing I had ordered from my local Dr, although Dr H can order it by request usually.
As far as the emotions, they seems to run the gambit as far the individual patient picture.
Some as Tracy said are so burned out w/ their adrenals, etc, that they don't feel anything; others have their endocrine system pumping OT and displays in the fashion in which Gary seems to experience.
I have experienced both sides of the coin and IMO they are equally terrible although the lack of emotions is easier to tolerate/conceal.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
quote:Imagine drinking 40 cappuccinos. This is the only way I can describe what I feel in my body. So, I cry as I can't get any relief. I don't see any of this as a true depression. If I stabbed you, you would cry, but it doesn't mean your depressed. My body is being slammed with out of control symptoms and I see this as why I cry.
I read your post, and it sounds like I could have wrote it.
A while back, you gave me the idea to restore my methylation cycle. Well, I followed my own modified methylation protocol with a Dr. B's suggestion 25 mg (1 cc) of IM B12.
At first, these shots would knock me out to sleep, and I would wake up with take-me-to-the-hospital anxiety a couple hours later. After a week or two, my body adapted, and the B12 shots are actually what calms me more than anything I have ever took. Pharmaceuticals I have tried don't even compare in terms of effectiveness.
If your methylation isn't working correctly, certain partial blocks can cause an imbalances with GABA AND cause glutamate toxicity. Lamictal probably helped you a lot because it modulated glutamate, possibly relieving glutamate toxicity. I think if you were to give B12 another go, staying on Lamictal at the same time might be a good idea as I think it may prevent the "side effects" some people get when starting B12.
However I believe if you keep putting band-aids on something that is truly neurophysiological effects from a dysfunctional metabolism that can't detox certain substances, you'll continue to be in an endless loop. Perhaps this is why regular medications just fail for you after a while. Perhaps this is why they failed for me a well.
When I talked to you before, you talked about sublingual B12 I believe. Were you ever on the shots? I know your B12 stores are fine now, but truly, in terms of methylation, I believe that is irrelevant.
If you look at CFS protocols and CFS boards, you will see that most use much smaller doses of B12, and many use sublingual. This type of treatment didn't provide ANY relief for me.
Perhaps a large dose of MB12 may send you into overdrive for a while and cause other symptoms, so it may be smarter to start with low doses in your case and build up. 25 mg/day of IM B12 is the dose I need to balance my nervous system.
I think many here are diagnosed with mood disorders and put on drugs like Lamictal when in fact the true cause may be a GABA/Glutamate imbalance that can be permanently restored by fixing your methylation cycle.
From reading your posts, it never looked like you had true depression. To me, it looked like your stuck in a chronic, overstimulated state. When I cry, it isn't because I am depressed, it's because my body is torturing me from the overstimulation and anxiety (I hate using the word anxiety since I feel that I am so misunderstood when I use it). I haven't been depressed during my whole journey. I've been upset, but never depression. Most of the time just overstimulated. Not a type of overstimulation that anyone could get with situational anxiety. It's truly a neuro and/or neurotoxic state. In my case, it feels as if my brain is truly being destroyed. In fact, I never had anxiety in my life until this mess. I have had major depression before in the past, so I know what depression is. Do you relate to me, or do you really flip flop between anxiety/depression?
I like to keep an eye on CFS forum and see what they are up to. People with CFS as well as Lyme patients find great results with the cholestyramine protocol for binding neurotoxins. Are you on cholestyramine? I believe it's preferred over Welchol, but can cause initial bloating. I know someone personally with Lyme that went on Cholestyramine. After the bloating subsided, she felt so much better. It was like night and day. I would like to try it myself.
I hope my input can help you and your doctor go the right direction! The biggest difference between you and I is that I don't think I could ever touch coffee (too afraid of more overstimualtion). However, I had ADD a a child, and I have always reacted the opposite to many substances.
------
What I have been wondering in my own head:
Do you need to have CFS or Lyme/CFS to have methylation problems, or can Lyme disease and other chronic diseases cause methylation blocks on their own? This is a question that I don't know the answer to. I don't believe CFS is Lyme, however, I believe that Lyme and CFS can be comorbid.
[ 07-18-2010, 11:04 AM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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lymetwister
Frequent Contributor (1K+ posts)
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posted
I seem to be waxing and wayning here the last 2 days. Certainly not as bad, but I'm wondering if it's possible that all the Antibiotics I just did could cause more swelling and worsen the encephalitis that I already have.
My Spect scan from just 3 mos. ago showed hypoperfusion in 3 areas of the brain. To me, it felt like it was resolving, but now it feels almost as bad as it was back then.
I don't know what to thin right now. I just need relief from this Sympathetic overdrive.
I have come to realize that it is not a true anxiety. Benzos don't really help it much, but low dose Perocet does. And when my body is going and my mind is tired and I feel fatigued, I often go for coffee to wake up my head and I often find that after the coffee, my CNS calms down, which defies the logic of caffiene and it's stimulant effect.
I wish someone could explain this. In fact, I will start a new thread on this. This is seen in patients with ADHD, but I know this is not what I am feeling, but the reaction is similar.
Thx for all of your support thus far. I feel like a broken record repeating this all the time.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Kday-you are talking about methyl b12 shots vs cytocoballium ( sp???) b12 shots right? I am presently on the methyl b12 shots. Not sure if it my abx, methyl b12, or something else, but some of my neurological problems are passing .
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Perhaps you should ask your doctor about that tommorow.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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MB12/methylation also helps your body restore adequate levels of intracellular glutathione on its own, therefore helping you detox.
Precursors to glutathione or certain types of glutathione can help to a point, but if your problem is a methylation block, your still putting a band-aid on instead of treating the real problem.
Since taking B12, I don't feel the need to take so many precursors or use other detox methods. I guess it wouldn't hurt to try to boost my glutathione more, I just kind of forgot about it. I guess when you are not as toxic, you don't think about detox as much.
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RZR
Frequent Contributor (1K+ posts)
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posted
Gary,
I hope you are feeling better...good talking to you on the phone last week.
Let us know how the ND visit works out for you.
I am seeing our doc (Dr J) tomorrow.
Take care, Jen
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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lymetwister
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posted
Kday,
Somehow, I skipped over your earlier post. Didn't mean to ignore you.
There is alot of debate whether Metyl B12 or just B12 do the same thing. I'm not sold on either, but like I told you in the past, I could not tolerate B12 in either form initially and had to work up. That in itself did seem to jack up my anxiety.
Everything I do right now is a bandaid except the abx.
I think CFS and Lyme are 2 of the same. I had CFS early on in my illness and it is now gone. At one point, my legs were like Jelly and I could hardly walk, like I had MS. I shook like I had Parkinsons at other times. None of this do I have anymore.
I have the IV Glutathione and have been taking it here and there without much success.
Early on in my Lyme, it would clear my brain fog right up. I am so very toxic from the last round of meds. I am 7 days today with everything on hold. I'm waiting for Detox doc. tomorrow and LLMD on Tuesday.
Whats funny is that even though I almost killed myself with the last round of meds, a few more symptoms have gotten better or are now gone. If my body would just settle down, I could go out and do alot.
Marijuana is next on my list if no one can help me with this.
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Can't you call your LLMD for advice over the weekend during emergencies Gary? That may help.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I would think the B12 probably jacked up your anxiety because of a methylation problem. Perhaps that's not the problem, but why would B12 give you problems? I guess you theoretically could be overmethylated, but I don't know too much about overmethylation. I think Niacin is what is used for overmethylators.
Here's a little resource on excitotoxicity and neurological illness that you may find useful:
I don't really have any more suggestions to make, but just one thing.
Be very careful with marijuana. I don't recommend it at all for Lyme/CFS neurotoxicity. Been there, done that. Been to the E.R. with SVTs that lasted many hours on sedatives and beta blockers. I was in California, and the doctor wasn't convinced that marijuana itself could have been doing this, and he sent down cardiologists. According to the person who took my pulse it was 230 (I know, this is unheard of). I had tachycardia and heart issues and a history of SVTs to begin with, but this was the worst one I ever had. It wasn't just a bad trip, but yes, I was very scared. If you are an experienced smoker and know the type of strain you are using, maybe you will be better off. Not all marijuana is the same.
Be careful. Don't make things worse for yourself. From personal experience, it's not worth the risk in my opinion.
If you are going to take the risk, take small hits and wait a bit to evaluate how it makes you feel. I know the common belief is marijuana is completely safe, but it is no way free of unwanted side effects.
[ 07-18-2010, 09:17 PM: Message edited by: kday ]
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
After doing more research, you and I actually have the symptoms of overmethylation. However, I respond very positively to supplements for undermethylation, so even though I have the typical symptoms of an overmethylator, I am actually an undermethylator. Ah, I am so confused!
Niacin can help with overmethylation.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Gary, How are you doing. Let us know how did your appointment go with the new doc. Take care.
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Good luck with your appt. I'm very interested in hearing what is recommended.
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