posted
It was suggested I start a thread by someone else on here and ask about things I can do to help myself get better becuase right now I am getting no where...
I became really ill towards the end of Novemeber in 2005 and have been in a downfall ever since. I got diagnosed October of 2006 and was started on immune supplements and Cats Claw for 2 months. I then decided to buy a GB4000 and rife for a month (I herxed with it as well) After a month of that my parents decided I needed to see a lyme doc. So now I am being tried with oral ABX since the beginning of Jan.
So in total I was sick for 9 months before a diagnoses. I have been treating for 7 months by May 1st and I an still continuing to downward spiral. I use to be able to go to school while sick, now I am house bound 95% of the time and in bed most of that time.
I don't have a yeast problem (potent kefir, probiotics galour, antifungals, sugar free diet, foods that naturally kill yeast, glutamine, aloe vera, nystatin, ect.)
I dont have metals, been tested by 2 different labs and everything is fine.
this is my Igenex results: IGM IGG 18 - + 22 - - (23-25) ++ - 28 - - 30 + + 31 ++ IND 34 - - 39 IND IND 41 IND ++ 45 - - 58 - - 66 + + 73 - - (83-93) - -
My Bowen test 7 months ago was a 1:64
I have treated my hypercoagulation. I am on hormones.
For detox I am doing IV glutathione, epsom salt baths, lemon water, lots of water through the day, I did chitopower for a while, I try to do some kind of excercise everynow and then...
I can only tolerate baby doses of ABX. I have to pulse (take an abx once every 3 days) I seem to herx everytime and I have symptom flares like crazy. One moment I seem to be ok, next hour I am in the hospital about to literally die. WHAT IS GOING ON!
I go back to see my LLMD on May 7th. What questions do I need to have for him??? He told me on the first appointment that in 1-4 months I should be a completely different person, he was right! I have gone from 50% functional to 30% at the best!
Sometimes it can take a long time on abx before you see a difference. I know its tough, but you will improve.
Also being on abx YOU WILL GET WORSE BEFORE YOU GET BETTER. Sorry to say its just a part of having lyme and how this bug works.
But having said that.....
Healing also depends on a few things:
How long you've been sick prior to treatment
Co-infections & how many you have.
Reinfections
Heavy metals: Mercury, arsenic, aluminum, tin, cadmium, etc.
Your diet - Chemicals such as Aspartame & MSG can make anyone much worse and prevent healing.
I've been on abx for 2 years so have my kids we are doing alot better now. But it took this long, and we are not completely healed yet. But at this point I'm so grateful for good days.
posted
I am also on an all organic diet, no additives or anything like that...
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SForsgren
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posted
The "I don't have metals" statement is concerning... It is often the people that are the MOST metal toxic that are not releasing metals and thus hair or provocation tests may not always show the issue. I don't think anyone with chronic illness can get well without also addressing the metals issue.
Parasites, mold, and co-infections are also major players and often overlooked. Mold is a big, big, big one in my opinion.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
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posted
Also, read the Biotoxin cover story in the PHA at publichealthalert.org - June 2007 issue. Coming soon. You sound to me like someone that also needs to think about and investigate Biotoxins.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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treepatrol
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posted
you said ABX since the beginning of Jan.
It takes longer in some cases I went way longer than that of coarse i was infected longer before treatment.
And Iam still on abx's you should treat coinfections.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
kam
Honored Contributor (10K+ posts)
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posted
Good thread. Thanks for posting it. I too will be keeping an eye on this thread.
I, too, need to deal with mold, metals, parasites, etc.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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ByronSBell 2007
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posted
we have had the house checked over for mold...
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posted
You're doing all the right things, Byron. Just KEEP GOING!!!! I was WAY worse after going on abx.... for a LONG time. At the slow rate you are going on the abx, it will take awhile yet....could be months, at least.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kam
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posted
Just wanted to let you know I got worse on abx too.
Nothing normal about lyme disease..throw all preconceived (sp?) ideas out the door.
I tried not taking the abx several times in the beginning and that did not help either.
It seems each time I start a new abx, it gets worse before it gets better.
The good news is that it is getting better.
The last time, the pain was greater than usual.
I was not sure what was going on.
NOw, I am waking up without feeling like a truck ran over me. I look forward to going to sleep at night...with the help of a sleeping pill.
Before I dreaded it.
Over doing it today. So, not sure how clear this is. Need to give my brain a rest.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Two things that I don't see listed in your oringinal post are coinfections and aso titer. If either of those are present than the body is preoccupied dealing with those antibodies, rather than fighting the lyme war going on in your body. Also the health of your immune system comes into play.
Have you had coinfection testing? Aso titer? also how is your immune function or do you have immunodeficiencies? IgG , IgM & IgA?
Keeping trying and keep looking forward.
elle
I'm not a doc or a medical prof . . . everyone who lives at my address has LD
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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Beverly
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posted
ByronSBell,
I had a very hard time in the beginning of my treatment also. The first two years I was in bed most of the time herxing and I could only tolerate baby doses of abx and pulsed them as you are. And it wasn't until I was treated for Babesia that I started to have truly good days.
I have learned to do more detoxing for myself, Tincup's Tea recipe has helped me alot along with whey protein shakes. It sounds like you are doing alot of good things, so maybe it is just going to take more time before you start having good days. Or maybe you need to be treated for co-infections.
I am sure everything I have said has already been said above, but my eyes are too tired right now to do a lot of reading...so just adding my 2 cents worth.
Good luck to you.
Posts: 6641 | From Michigan | Registered: Jun 2001
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ByronSBell 2007
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posted
quote:Originally posted by elle: Two things that I don't see listed in your oringinal post are coinfections and aso titer. If either of those are present than the body is preoccupied dealing with those antibodies, rather than fighting the lyme war going on in your body. Also the health of your immune system comes into play.
Have you had coinfection testing? Aso titer? also how is your immune function or do you have immunodeficiencies? IgG , IgM & IgA?
Keeping trying and keep looking forward.
elle
I'm not a doc or a medical prof . . . everyone who lives at my address has LD
I do have a defecient immune system but I am on some very good mutivitamins and COQ10 with amino acids. I haveno been tested for co infections, my doctor thinks the tests are worthless, I go see him on May 7th, I will ask about them. SOMETHING is holding me back from healing!
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posted
True immunodeficiencies - selective immunoglobulin G, M, A, E cannot be helped by vitamin supplementation - (google for more info on these)
Co-infection tests - most LLMDs would agree that the more information that they have to work with, the better the advantage. Coinfections need to be treated first.
Also ask about the aso titer - search on this site for the Dr Lida Mattman research or google. We have worked over a year to get down aso titers on 3 people at my house and they aren't down yet. My doc has found several of her patients with high aso titers.
elle
I'm not a doc or a medical prof . . . everyone who lives at my address has LD
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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quote:Originally posted by ByronSBell 2007: SOMETHING is holding me back from healing!
Time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Health
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Member # 6034
posted
Byron, when do you think you got the tick bite?
I would def say that if you have been treating for 7 months, you should be somewhat better. AND because you are herxing, you should be
having SOME good days.
I started treatment, and by the 3rd Month I was driving again, a little bit. I was back on the jogger at a slow speed. HOWEVER, I am sicker now, because I went OFF treatment for 7 months
to treat with herbals, and was an idiot because I kept at it even though I was getting sicker, I thought I would eventually kill it, but instead, I just got sooo sick, within one month, boom,
I would def see why you are not somewhat better, because you are herxing, so why are you not better somewhat.
Are you having the 28day cycle of lyme herxing. I had this with treatment,.
I must also say that I also herxed on lyme treatment and was getting worse because I had babesia.
So, maybe you have babesia or other coinfection.
I was herxing, and still got worse later on in treatment.
So, keep on asking, I just think if you have not been sick that long, you should be feeling better on your treatment, and also,
I thought if you have only had lyme a short time, like a year, then you should not be having to go so slow with treatment.
ALSO, did they say why you have an immune deficiency? what is the cause? is it lyme or something you were born with.
Also, when you say deficent immuns system, did an Internist find this out? If you have low white blood cells, I read on Dr Burrascano's guidlines that if it is persitant it can be Erlichia. I think? the antibiotic of choice is Doxycycline, I am not sure though.
Immune defeciency can be AIDS, and then you can get sick from everything. What is the cause of YOUR immune deficiency.
Keep searching, you will find the answer, eventually.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
One study showed how cystic forms of Bb were stored for 6 years before placing them back into a growing medium. Within 4 to 5 weeks, live spirochetes were detected.
(From the 2006 Conferences)
Posts: 789 | From CT, | Registered: Jun 2006
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posted
i'm going to add my 10 cents to this post. You do have to stick with treating continuously for long periods of time (some even longer dpeending on how long you've had it) and yeah, i also have had my up and massive declines while on treatment to the point of monthly ER visits only to be told i'm fine . Lyme and co-infections do need separate protocols/treatments though. But yes, stick with treating, don't stop. One additional suggestion is to buy this very important book: Healing Lyme: Natural healing for lyme and its co-infections. I know some out there may not be supporters of "natural" anti-spirochete alternatives, BUT.. this book give the BEST and most detailed explaination/information about the organisms themselves and what is actually happening when you "herx" and why you can have such big ups and downs and why consistent, loong-term thorough treatment/healing every day is so important. Read it! I think it is essential for everyone who is working to win this battle.
-------------------- Fortune favors the brave. ~Publius Terence Posts: 6 | From Oregon | Registered: Apr 2007
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ByronSBell 2007
Unregistered
posted
My immune is defecients in IGM and some other things that I dont remember.... It was an Immunologist/hemotologist that did all the testing, he said my immune system is basically down but is still functioning and can protect me from most infections...
I have that book healing lyme and it's co infections, I am going to read through it again. I have heard how some people keep treating lyme and dont get better, then they find out they have a co infections... maybe that is my problem?
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posted
Byron, As you stated above, you will be treated for coinfections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ByronSBell 2007
Unregistered
posted
DR. C said he will treat me for co-infections but how do I know if i have them... I am just getting really scared that each month that goes by I steadily getting worse. Usually the first months are the worse then you start to notice each month isn't as bad,then you start improving....
For me I am going downhill all of these 7 months of treatment
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Mine too. I thought I was the only one with Lyme and IGM deficiency . The doctor told me there is nothing they can do about low IGM. They ran a battery of other immune tests and I am better than average in all. I don't get sick often either. My immunologist thinks it has to do with the t cells communicating with the b cells.
Posts: 649 | From United States | Registered: Dec 2003
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quote:Originally posted by ByronSBell 2007: DR. C said he will treat me for co-infections but how do I know if i have them?
For me I am going downhill all of these 7 months of treatment
If you want to spend the money, he will test you. Simple as that. BUT....You can't rely on the test!!!! So I don't see the point.
Your appointment is soon. Relax a little.
PS... If you herx on the babs meds, then you have it. That's how you will know.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ByronSBell 2007
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posted
I have been on babesia meds but cant tell if it is a lyme herx or a babesia.
Whenever I herx or get a flare all my symptoms I have listed get worse and every ABX makes the same symptoms get worse. I herxed the exact same on doxy at first as I do on Biaxin/Plaqinil. Same goes for ceftin and zithromax, except on th herx with zithromax I got really dizzy
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treepatrol
Honored Contributor (10K+ posts)
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posted
Sure wish all the new people could just let the LLMD treat and relax and hold on it will get better.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I'm really confused about this co-infection testing statement. I was tested for babesia - the tests were positive. I have slide showing babesia in my red cells. I can see and have lab proof back by clinical symptoms - reoccurring, acute anemia. If my llmd just didn't bother to gather this info, I would be having bone marrow testing and other testing instead of treatment.
I also had positive ehrlichia test, which have since resolved.
Since when has co-infection testing become bad science?
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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posted
It's not. But what good is a negative test if you truly have babs??? What is gained for the patient? More years of misery due to untreated babesia??
My test was "borderline".... When we did a trial run of meds, I herxed harder than I EVER did on Lyme meds. It was seriously there.
Had he not done that, I would have gone for years untreated and would NOT have gotten well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ByronSBell 2007
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posted
I forgot to say I have been on clindamycin/quinine as well but not long...
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posted
Now you're talking. Do you remember if you herxed then?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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ByronSBell 2007
Unregistered
posted
the week I was taking it my pain did go up but I was also battling a very bad cold as well... Dr. C didn't want me on it long since it tears the gut up compared to all the other ABX. I am going to try to switch to zithromax now and get off Biaxin/Plaq. I have been on that for about 40 doses. Last time I took a zithro I hrxed like a crazy drunk and got really dizzy, I may ask Dr. C if he can add in Mepron. I know he wants to throw Flagyl at me soon as well. Looks like hell for me for the next few months!
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trueblue
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by duke77:
quote: My immune is defecients in IGM
Mine too. I thought I was the only one with Lyme and IGM deficiency . The doctor told me there is nothing they can do about low IGM. They ran a battery of other immune tests and I am better than average in all. I don't get sick often either. My immunologist thinks it has to do with the t cells communicating with the b cells.
I tested low in IgA and IgM, but my IgG was fine. Dunno, I was also told me T-cells and B-cells aren't talking. ^shrugs^
.
Byron, I suspect at 7 months you may be on the verge(sp?) of things starting to change. I know this is scary and sucks big time but hang in a while longer. There's really no way to rush it. It sounds to me, in my limited experience, that you are doing everythign you can.
I'm being reminded again myself that slow and steady wins the race. Patience is not my strong suit, trust me. (I'm almost 4 months into Babs treatment. I was diagnosed with Lyme in 93 and finally got someone to treat Babs, now. And you can be sure I want it done, now, too.)
ps. I liked when you had your running picture up... it made feel like I should keep running. Thank you for that.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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map1131
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posted
Patience is something that eventually sinks in, and acceptance that you can only heal as quickly as your mind, body and spirit are able.
Bryon, you're young and in good hands with Dr C. You are stressing yourself and your overstessed sick body by wanting it healed NOW.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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treepatrol
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posted
Its just to to bad that when we finaly get treated that we didnt all ready know how incedious this spirochete is and all of its complexities.
Let alone all the details that come along with coinfections.
It dosent operate like any other germ its whole life is geared to hide & procreate at different time frames than other germs.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Hey Byron. Did you say something about getting an MRI... maybe I'm getting confused with something else.
I'm asking because overnight 3 months ago, I had a severe reaction and haven't been able to take medicines since. I'm a million times worse.
I'm not talking about "fight through it" bad, I'm talking about fully bedridden, severe reactions where I end up in ER, 3 day long anxiety attacks... bad.
I'm wondering about the MRI, because I wonder if you had the contrast dye for the MRI?
My situation started the night I had the MRI(contrast dye) done. This can be coincidental, but I'm stuck trying to figure out what went wrong. Someone else suggested neurotoxicity from artemesia, but I'm still trying to figure everything out.
I went from taking 1000mg of zithro, artemesia, all kinds of stuff, to not being able to use nasal spray w/out going into shock for days. Again, this happened overnight for me.
-------------------- Never walk through a cornfield backwards.
posted
yes I had the dye! I felt really tired and sick the whole day after I had the MRI done, then the next night I woke up in screaming pain, ever since the MRI I have been in the dump.
I remember a while back, about 9 months ago I was in the ER for screaming pain (before lyme diagnoses and I had to have an MRI done with dye, I remember the day after the MRI I had to be hospitalized again becuase my case worsened 2x's finally they said there is nothing we can do and Cigna wont pay for anything else we do...
I kept telling my parents I dont want another MRI done and they forced me, now I am in a living hell
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clairenotes
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What is the dye made of?
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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ByronSBell 2007
Unregistered
posted
I found the dye is called gadolinium.
After some short researching it is a metal. WOW! sure am glad I have more metals floating around in me! Another thanks out to the medical field
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clairenotes
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posted
Could there not be an antidote? Maybe chlorella/cilantro protocol? Foot baths? IV Chelation?
Is there a professional you could speak to that has some knowledge or experience with this? Doctors specializing in IV chelation?
Keep asking questions.
Claire
[ 25. April 2007, 10:18 PM: Message edited by: clairenotes ]
Posts: 1111 | From Colorado | Registered: Oct 2006
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ByronSBell 2007
Unregistered
posted
My DOM (doctor of oriental medicine) does IV glutathione pushes, then follows that up with a large bag of saline, magnesium, and myers cocktail. He said it should wipe just about everything out...
The second time I did the IV glutahione push about 15 seconds after I got it I had a severe "punch" like feeling in my liver area then it went away...
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clairenotes
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I am a little confused. Did you have this procedure done after the MRI or before? If afterwards... it doesn't sound like it helped. If done before the MRI, maybe you should speak to him and try it again, possibly?
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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ByronSBell 2007
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posted
I had the IV glutathione before the MRI, I havn't had another just yet, I think my next one is next week...
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TheCrimeOfLyme
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posted
Coinfections. Yeah your tests may be worthless for them ( could be negative when in fact you DO have it), but you HAVE to be treated for it.
Also, switching antibiotics may help. Lyme has several forms.Yours could be in a different form RIGHT NOW.
And the immune system problems? Ouch. Adds to the problem there.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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quote:Originally posted by map1131: Patience is something that eventually sinks in, and acceptance that you can only heal as quickly as your mind, body and spirit are able.
I like that statement, Pam!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Boomerang
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posted
Hang in there, Byron. Hubby has been on ABX for 15-16 months now..... It's a long slow process.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Health
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posted
I tend to feel that when on the right treatment things can clear up quickly sometimes. When on the right treatment, you KNOW because your symptoms are getting a little better all the time.
Why I say this is I experienced it a few times. I knew that it was the right treatment.
I remember I became allergic to all foods, and within 1 week was able to eat a little better. Within 6 months, I was eatting 100% better.
WHen I became sick from light, within ONE day, When switched to Clindaymycin and quinine, for babesia, I was able to tolerate the computer for a little bit. Within one month I was able to sit
and watch a TV program for one hour without feeling like I was going to go insane from the anxiety the TV gave me.
Right now, things are not going well. Something is wrong I feel. What, I dont know, still working with it.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Dave6002
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posted
quote: I tend to feel that when on the right treatment things can clear up quickly sometimes. When on the right treatment, you KNOW because your symptoms are getting a little better all the time.
I cannot agree more on this.
Sometime, I feel immediately better within days if I am on right track, even under a herx, symptoms could be worsen, but the "feeling" is better.
So maybe we should trust our guts to distinguish a relapse, side effects and herx?
Otherwise, I cannot tell which is which.
Posts: 1078 | From Fairland | Registered: Apr 2006
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ByronSBell 2007
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posted
I have kinda come up with my own theory but dont know if it is right...?
When my symptoms get really bad and I back off the ABX or whatever treatment it was and I come back feeling stronger after the symptom flare/herx subsides then I know it was a herx.
If I have a bad symptom flare and i dont have that feeling of stronger after it ends, then it was probly just a lyme flare...
Right now I am in a Flare for 6 days now, my pain would usually average around a at best 3 and at worse 5. Now for the past almost week I have been best of 5 and worst at 10. This has never happened before and the only thing that has changed is I had a MRI done the same day this horrible! phase is happening to me... by the way I have been of all ABX for the past week and my symptoms are not coming down like they always have...
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. Lyme and co-infections do need separate protocols/treatments though. But yes, stick with treating, don't stop. One additional suggestion is to buy this very important book: Healing Lyme: Natural healing for lyme and its co-infections. I know some out there may not be supporters of "natural" anti-spirochete alternatives, BUT.. this book give the BEST and most detailed explaination/information about the organisms themselves and what is actually happening when you "herx" and why you can have such big ups and downs and why consistent, loong-term thorough treatment/healing every day is so important. Read it! ![[group hug]](graemlins/grouphug.gif)
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by the way I have been of all ABX for the past week and my symptoms are not coming down like they always have... ![[cussing]](graemlins/cussing.gif)
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