Topic: Feeling incredibly hopeless...no lasting gains in 6 yrs
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hello I have not posted here before but could use some support. I have been in treatment, mostly orals for 6 yrs on and off. Took off a year plus to try ozone, herbs, Rife, Carnivora. Back on orals. Did pulsed IVs with Dr J for a total of 35 days of IV and a few weeks of Rocephinn.
In the early days I went into remission for almost a year from 3 months of doxy. Then symtoms restarted, I got a new doc, and the combos began. I seemed to make some improvements but nothing lasted. Doc would not RX IVs so I switched to Dr J DC and did his pulsed IVs with some gains. Then had to stop with him due to funds and back on orals, which seemed ineffetive.
I have a really bad case of bart that doesn't seem to respond to anything. I haven't had the hopeless despair (and yes, it is bart, along with sore throat and nodes, terrible shin and foot sole/heel pain, upper back knots, and psych/cog (my worst). Now seems to be moving into dementia. I just got Buhner's new book about myco and bart and he says yes, both can cause all these things,
Why doesn's my immune system respond? I can drink a bottle of ABAB or Abart or take Cowden or Buhner herbs with no response at all. All the standard orals now do nothing. My teeth vibrate at night, and my scalp and other muscles twitch constantly. Eye floaters are back, flashing lights....and all this happened ON abx.
Buhners new book says bartonella doesn't have a herx, you just get better. But I never do!
I know I need IV but my doc is being watched and is loath to RX them or put in piccs or ports.
I tremor and shake and am soooo sick with no immune system to help me!
I have two small children and need to stay strong for them. Any thoughts?
Posts: 3528 | From US | Registered: Apr 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Have you tried Dr. K. antiparastic protocol or antiparasitic herbs and salt/c? I was where you were and treating parasites aggressively was the ONLY tx that turned things around for me.
Please consider this option so you can get your life back. Sorry you are having such a rough time, but don't give up hope.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Ugh.. that sounds awful. I'm so sorry. Any chance you can get a different doctor so you can get IV?
No harm in trying the parasite treatment, I would suppose.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
CD57, it wasn't until I started using 2 freqs 357 & 832 that I was able to knock bart down a notch or two.
Is he dead and gone? No, but I certainly had more success with rife with these freqs (thanks to our rife thread folks) than years of abx etc.
They say bart should be hit everyday with rife. I'm not able to do that. It certainly makes me feel worse, immediate herx/healing crisis before having better days.
I need to be brave and try a daily 7 day trail.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Just a note that I am praying for God to open up a new pathway and finances for you...Keep going you are worth it !!!!
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
so sorry and dont know what to say. i did respond to orals. have permanent problems but not like you. im so sorry . it seems you have tried all that i did. high dose oral combos and buhner.
maybe the parasite and new rife will hlep.
slat c is easy and cheap and there is a lot of support on the parasite thread gael started
wish i had more to suggest
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
CD57: I am so sorry that you are having such a hard time.
You could have antibiotics infused through a peripheral line each time. Ex. Zith 3 times/week.
Have you tried IM antibiotics? You can have a family member inject them.
If you need IV and your DR won't RX it, can you switch to another Dr? Doesn't have to be one of the expensive names, just a good ILADS Dr.
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
CD57, I'm so sorry you're going through this..
It can be so scary when your body just does this stuff... I'll be praying for you.
The only thing that comes to mind is mag., D. and fish oils..Tremors and brain
Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
have you tried humaworm? i hear it's pretty good.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Go after parasites. They are what keep people from getting better, IMO. Also, heavy metals.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Have you had your immune system checked to see if you have a deficiency?
Posts: 4681 | Registered: Oct 2000
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posted
That's too bad that you're having a hard time. Maybe to keep trying things and see if anything works at all?
Like for example, drinking mangosteen juice for me stops eye inflammatory symptoms.
And I'm wondering if your muscle twitching would respond to some magnesium. I had to try a couple different kinds of it, and am passing magnesium glycinate.
I don't think any of us are going to know what helps unless we try remedies. I am doing lots of anti-inflammatories, like the mangosteen juice, noni juice, grapeseed extract capsules, turmeric powder.
You may still need to find out which remedies you might be able to get some symptoms relief from. I suggest testing one at a time to see what it does.
Posts: 13116 | From San Francisco | Registered: May 2006
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
CD57,
I have Bart, but just want to say that I can't seem to function at all until I have lots of green tea with licorice root.
(The licorice root helps with orthostatic hypotension)
But, I MUST HAVE THE GREEN TEA. (I decafinate it myself)
I think Buhner recommends the green tea in pill form, I drink the tea.
Did you try this along with his herbs?
If not, maybe using it would push your healing up a notch or two?
Also, try to avoid sugar and gluten.
The above suggestions are all good.
Along with the green tea and knotweed, I am using Beyond Balance Bar-I with Zithromax.
Can't believe this Bart.
Posts: 1358 | From Midwest | Registered: Apr 2009
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