Quantcast

Lyme Disease Support Network

Need support right now


#1

Hi all,

I feel so totally lost and alone after suffering with primarily psychiatric symptoms of Lyme for the past year. (My Igenix tests are indeterminate though I have several positive bands). And I have 5 mm non-specific white matter hyperintensity on a recent brain MRI.

I’ve spent my savings on Lyme. It is all I think or talk about. I don’t accept that I have it… I cannot seem to make decisions, move forward in any direction, or tap into my normally positive attitude and zest for life. The depression is now crippling. I am taking an anti-d for the first real time, along with BP meds, and the Rawls herbal protocol for treatment.

My immediate need is just a connection/support right now (I’ve always been a social butterfly, so I’m a bit astounded). I’m also curious about any experiences with ozone therapy, hyperbaric chambers, and medical marijuana. I think I may have to return to antibiotics (I’ve tried 2x with oral but destroyed my stomach) as I’m scared the infection will continue to do damage.


#2

Hi @idrucker,

I just wanted to reach out to say hello and offer some support. I’ve had chronic Lyme for about 7 years now (I’m 34; it took over 3 years to get diagnosed, hence it turning chronic), and I know exactly how your feel. Most of my symptoms are almost gone now after a couple years on a modified Buhner herbal protocol, and I hope my story can offer you some hope that things can get better. It does take time to find the right treatment that will work for you (everyone is different, unfortunately) and I know it is so hard to be patient…

Lyme can definitely be all-consuming - emotionally, physically, mentally - especially when you are feeling terrible. I have had periods of pretty severe depression with the Lyme, which for me I think is an actual Lyme symptom flair, as well as a die off symptom. I have been on and off antidepressants twice (still on them now) and although they are not something I wanted to take, they really have helped me. I have found going to talk therapy to be really helpful too. There is a mourning for your “previous” life before Lyme that I’m guessing you are probably experiencing too, and that is important to work through, along with just feeling shitty and depressed. Finding a friend or family that you can confide in also helps - but sometimes finding someone who is going through something similar can be helpful. I have been to a Lyme disease support group which was good, and perhaps you may know someone with a chronic illness that can relate to how difficult experiencing chronic health issues can be? I’m also happy to chat if you like.

I don’t have experience with ozone or the hyperbaric chambers, but I have a medical marijuana license and have found it to be helpful for joint pain and anxiety. If you live in a state where it is legal, it may be worth looking in to. High CBD strains are great for medical usage.

Prior to the herbs I am taking now, I took doxy & Plaquenil for a few months and did not react well to them, (destroyed my stomach too; my digestion was weak, to begin with, and my doctor and I decided to stop the abx because we felt like they were setting me back more than helping). Right now I am doing a modified Buhner Protocol (herbs) which has been working really well. The past year I started seeing an herbalist who put me on a parasite cleanse which has been difficult but also incredibly effective; he thinks that most people have parasites, and they are also infected with Lyme - so as long as you have parasites, you’ll have Lyme. I can give you his contact info if you are interested in trying new herbs and avoiding abx again… If you are on herbs right now, having an herbalist help you tweak them might make a difference for you. It took me several tries to get the right combination of herbs that worked for me but it was worth it in the end.

Good luck with things and feel free to reach out if you want to talk more!
Sarah


#3

Sarah!

It is so nice to “e-meet” you. Your email arrived at the perfect moment.
Thank you so much for taking the time to reply and for such a comprehensive
response. I am thrilled to hear that you are healing.

I’m in Miami, FL (not an area endemic for Lyme) where few Lyme-literate
anyones exist… And I’m in shock. I can’t believe what has happened to my
brain, my body, my spirit, my life. I have also been subject to excessive
stress (from end of 14-year relationship to living with parents, move to
work deadlines I can’t seem to meet, etc.). I’ve been trying to live my
former life (vibrant, vital, professor/corporate exec, athlete, world
traveler, volunteer, mentor, and general lover of life) to no avail.

I am in the midst of moving into a small apt.-finally out of parents’ apt.
And I’m begging brain cells not covered in biofilm to show up so that I can
write a report and take a tiny dent out of the insurmountable debt this
year has created. I am contemplating an-in patient treatment center as I
cannot seem to “handle” daily life. I’m also at a loss in terms of
treatment. I am on the Rawls’ herbal regimen. I will look into a medical
marijuana license. I"m currently wearing a pot patch and taking CBD
oil–neither is working too well. I am also on an anti-D and Klonopin (all
I took before was a probiotic and occasional Klonopin for sleep). I want
off of everything chemical and to puruse only natural healing and
meditation again. But I’m afraid the brain stuff will progress on herbs
alone. My family and friends love me, want to help, but don’t understand
and have grown weary of my broken record and daily pleas for help. My
brother, a physician is recommending the hyperbaric chamber which is
cost-insane.

I would love to talk to you when time avails. It feels beyond lonely even
when I’m not alone. So please let me know some good times for you. I’d be
ever grateful. My cell #305 -XXX-XXXX

Continued healing and gratitude to you,

Ilana

(Cell number removed by modsupport for the member’s
privacy protection. Please PM idrucker for her phone number if you’d like to
call her.)