Jessica's Journey

[Roz]

Hi Folks,

I have been just following this thread for the last few months.

Docs in the states are limited to what they can do.

This lovely young lady has lyme disease.

If your up for it could you please put her in your hearts and prayers.

x Roz

http://www.hopeforjessica.blogspot.com/

 

[Trudi]

[user=1758]Roz[/user] wrote:

If your up for it could you please put her in your hearts and prayers.

Wow, what I am dealing with is a piece of cake compared to this young woman.  She will definitely be in my prayers!!

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Roz]

[user=442]Trudi[/user] wrote:

[user=1758]Roz[/user] wrote:

If your up for it could you please put her in your hearts and prayers.

Wow, what I am dealing with is a piece of cake compared to this young woman.  She will definitely be in my prayers!!

Trudi

Dear Trudi,

Thanks so much, I feel exactly the same way. The poor kid went into Ketamine Coma at the beginning to get some of her life back.

Much Love, Roz

[Maz]

[user=1758]Roz[/user] wrote:

This lovely young lady has lyme disease.

Roz, thanks for sharing this and I'll keep Jessica in my thoughts.

A few folk have come to RBF in the past asking about the potential of AP for RSD (reflex sympathetic dystrophy), which causes horrendous pain. I have heard of it being connected to Lyme disease from some research I've done, but standard Lyme tests are so bad, I'm sure there are scores of folk left without diagnosis of this very debilitating disease. I had bodywide pain similar to RSD in the beginning and herxing intensified it. If folk in such terrible pain could receive IV antibiotics while being in an induced coma (something I actually wished for myself and I've heard Linda say in the past), it may actually help such patients further. Although induced coma may re-set the nervous system….what about those infections? They're still there and relapse so common in Lyme. 🙁

Peace, Maz

[Roz]

[user=27]Maz[/user] wrote:

[user=1758]Roz[/user] wrote:

This lovely young lady has lyme disease.

Roz, thanks for sharing this and I'll keep Jessica in my thoughts.

A few folk have come to RBF in the past asking about the potential of AP for RSD (reflex sympathetic dystrophy), which causes horrendous pain. I have heard of it being connected to Lyme disease from some research I've done, but standard Lyme tests are so bad, I'm sure there are scores of folk left without diagnosis of this very debilitating disease. I had bodywide pain similar to RSD in the beginning and herxing intensified it. If folk in such terrible pain could receive IV antibiotics while being in an induced coma (something I actually wished for myself and I've heard Linda say in the past), it may actually help such patients further. Although induced coma may re-set the nervous system….what about those infections? They're still there and relapse so common in Lyme. 🙁

Peace, Maz

Dear Maz,

Thanks so much for caring about her, you are such a beautiful person. Before I was Dx With R/A I had one Fibro. and some RSD DX's as well.

Mostly Trigeminal Neuralgia SX. with other nerve pain.

I asked by Lyme about the difference between Fibro and RSD I was told it could be just more lyme involvement with RSD.:(

I have got to start being faithful with this cyst buster meds., but I get the nerve pain more even with the Alinia.

This is just a thought, but I am thinking about asking my Doc about a very low dose of Neurotin. I just hope it's not nerve rotten.;)

Much Love, Roz

 

[Parisa]

Roz,

I'm just tossing this out there as I haven't really looked at RSD but have you tried taking Niacin at all.  Of course, if you did you would need to take it for a while as nerves take a long time to heal.

[Roz]

Thanks Parisa,

Hugs, Roz

[Roz]

Hi Folks,

Jessica, was treated by a LLMD in New York I believe.

My Lyme Doc even though I tested neg- treated me for Bart.

Check this out:

Bartonella

Typical symptoms in those with Bartonella and Borrelia (unlike the Bartonella that results from Cat Scratch disease) include ice pick-like headaches, major photophobia, anxiety or psychiatric issues, and even bi-polar symptoms. Neuropathy, reflex sympathetic dystrophy (RSD) or autism may also manifest, as well as significant cardiac or gut problems. The non-blanching ?streaks? that some people find on their skin may also be a telling symptom. Some argue that plantar fascial pain is found in both Babesia and Bartonella, but I think that it is more related to Bartonella. In any case, whenever extreme anxiety is patients? overriding symptom and is found in conjunction with neuropathic symptoms, such as burning pain, then I suspect that a Bartonella-like organism is causing these symptoms. 

http://www.lymebook.com/steven-harris

Much Love To All, Roz

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