posted
this is sapphires husband if you have seen under our skin that will best describe my wifes condition. she has most if not all the same symptoms as Mandy, she ha no llmd at this time.
she can't even sit up without heart rate elevating and if we try to stand her up her whole body immediately goes completely stiff, then she can't talk or move. After laying her down her hands draw with her arms stuck up in the air.
we are recieving regular medical help in a hospital at this time. could you help us help the drs. here give her enough treatment to get her stable enough to get to a neuro lyme doc?
thanks for your help sapphire jr
Posts: 495 | From KY USA | Registered: Dec 2004
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Pinelady
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Sapphires husband I am glad she is getting help- In her condition.
I would think the best you can do for now is determine what all she has.
Virus' I believe are your worst enemy with Lyme.
Have you went over to seeking LLMD section for Neurolyme Doc? That is another place to look.
Hopefully someone will be along very soon. Prayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Pinelady, so far we aren't able to get help here. they don't know anything to do for her. Tehy are wanting to transfre her someplsce else. They want her to see an infecrious diseas dr gut we already know how that will go.
i just tried to get the dr fo give her some bicillin la since ith helped her in the past but he wouldn't go it. figures.
any help would be apprcaited.
[ 05-01-2010, 05:43 AM: Message edited by: sapphire101 ]
Posts: 495 | From KY USA | Registered: Dec 2004
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posted
If the local people really are interested in helping her, until she can get to a lyme specialist, you might print out Dr. Burrascano's treatment guidelines (quite long) and highlight the treatment sections. Maybe if they see something in writing, it would help.
Tell sapphire hello for me! She helped me with Ebates and I'm lovin' it! Tell her I'm sending love and hugs.
Keep fighting for her, sapphire,jr!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pinelady
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posted
They need to throw all the electrolytes to her they can. IF they start pumping her full of antibiotics. Keep a temp pacemaker on stand by.
And if she does develop aberrant rhythms
-Many Lyme doc's suggest Claforan for heart involvement.
And keep a very close eye out for yeast. It can kill as well.
If she gets sicker they could call your LLMD to see if he can offer help.
Prayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
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They saved a few kids from KY. at Vanderbilt last yr. and it was in the news they were seeing a 100% increase in tick illness. So that may be an option. One would hope with reports like that they would be up on it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Vanderbilt failed to diagnosed the TN governor when he had a tickborne disease, but they treated him with abx anyway. So, not sure they are really up on lyme.
Posts: 8430 | From Not available | Registered: Oct 2000
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Thanks everyone, she is being treated at the moment with IV rocephen. I think they are just sseing if it will make a difference. We surehope it does.
She has got to be stabilized before we can move her. We're hoping to make the appt. monday in New york.
I appreciate all the help here.
Posts: 495 | From KY USA | Registered: Dec 2004
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lyme in Putnam
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I don't have a quarter of as much experience as people on this board, but I just hope she feels better soon.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Based on the heart rate and blood pressure fluctuations I would say that POTS or othostatic hypertension is an issue. A tilt table test would be the usual method of diagnosing this.
In plain English -- POTS etc is usually a result of severe adrenal fatigue. Nutrients such as B5 and C are needed to rebuild the adrenal hormones. Also major reduction in stress. One other possibility is that the lyme is actually affecting the hypothalamus pituitary axis in the brain. I think a SPECT scan would give more info on this.
With such severe symptoms sometimes blood pressure meds are required in addition to a high salt diet and sometimes fluid pills.
Of course the bottom line is to get rid of the infection to remove that source of stress on the body.
I went back and read some of your posts from your ER episode in December -- sounds very much like some episodes hubby has had while treating bartonella. IV Primaxin might be another IV med worth considering -- it helped hubby while he was on it, but like IV Rocephin within a week of stopping either of these meds he was back to having bad neuro symptoms from bart or mycoplasma or BLO or whatever the mystery pathogen is. Most of the progress he saw on those meds just seemed to evaporate very quickly.
As to herbs -- oral tinctures of cryptolepis and stephania -- both from Woodland Essence -- do cross the blood brain barrier and can help with bart symptoms. But very high doses are required which means a couple of hundred dollars per month just for these tinctures. Recently Buhner recommended combining the 2 tinctures -- hubby took each individually for a month or two before they seemed to lose effectiveness.
I would suggest either a bloodslide from Clongen or F lab if you need convincing that bart or mycoplasma is still present. The Clongen bloodslide is only $100.
In cases of such severe brain inflammation a LLMD might prescribe Cortef (hydrocortisone) as long as you are on antibiotics. Hubby has done this after an ER visit very similar to your December one -- over the last year he has decreased the Cortef dose from 30 mg daily to 5 mg daily which is just for adrenal support at that low dose.
Hubby has never done LDN but that might be another possibility. He did try low dose Benicar (a blood pressure med) for the inflammatory effects, but it lowered his blood pressure too low.
IV magnesium might be helpful for muscle rigidity and a Meyers cocktail could help with detox. IV Vitamin C can help reduce brain inflammation as well as helping the adrenals. Of course a hospital won't do any of these things except maybe the IV magnesium.
With severe brain inflammation and encephalopathy symptoms you need to keep a close eye on elctrolytes -- at various times during different hospitalizations hubby has required IV potassium and IV magnesium in addition to extra IV fluids for the saline.
As to the arm sticking up in the air -- neurologically that might fall under the term dystonia or possibly geggenhalten. Hubby has had many different neuro terms used to describe his different tremors, myoclonus and movement disorder type symptoms. A former PCP used to just say he was having one of his things since the neuros were so confused.
Let us know if you go see the neuro at Columbia or the one in Connecticut. Hope you can get back on track soon with some treatment that does more than just relieve symptoms.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Sammi
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From my experience, Vanderbilt is definitely NOT a place to go for Lyme.
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Pinelady
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Good to know Sammi. What year was that?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Sammi
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Unfortunately, every year that I know of.
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