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Hello,
I am fairly new to my diagnosis of Lyme/Scleroderma (had symptoms starting around 9 months ago). The onset and progression was quick, so much that being in my 20s I had to temporarily leave my active and athletic career. I have recently experienced skin changes all over, but the morphea began just on the leg where I got bit (got the bite biopsied and the scar from the bite still remains). I didn’t have a confirmed diagnosis of Lyme until 2 months ago with an IGenex and CDC positive Western Blot of 4 positive bands. So, before being treated, I had untreated Lyme for about 7 months. It got so severe that I began experiencing seizures and severe nerve pain and disturbances. My LLMD first prescribed 200/mg of Minocycline and 200/mg of Plaquenil daily for about 3 weeks. We then added 250/mg of Zithromax once daily and Tindamax on the weekends. The Tindamax was hard on my stomach, and my LLMD said take what you can and back off if needed. I have also been on 3 different types of probiotics, Intramax Liquid Multivitamin, Buffered Vitamin C, and Glutathione. About 3 weeks ago, my LLMD added the herbs Nattokinase, Buluoke, and Resveratrol because I developed a clotting disorder associated with the infection which included a high D-Dimer and low Fibrinogen levels. I understand that Scleroderma patients are often put on ACE inhibitors even if the blood pressure is not high yet to protect you from renal crisis or hypertension, but, my blood pressure was already naturally low, and I believe recently it has gotten lower.
I recently became intolerant of the oral meds, and I was prescribed by my LLMD IV ceftriaxone instead and the local hospital confirmed its need since I have had untreated, severe lyme symptoms for so long (I have unfortunately had many ER visits going through this diagnosis and treatment). Last week I got a PICC line installed and received 3 infusions of the Ceftriaxone under the hospitals care, but the PICC damaged a nerve upon placement and gave me a temporary case of facial droop. The facial droop subsided within a few days, and we do not know if it was the PICC placement or the Ceftriaxone creating too strong of a Herx. The PICC had to be removed because the nerve pain was too severe in that arm, and it will take some time to recover. No stroke or clot was found.
Long story short, I am now going though a diagnosis of a type of dysautonomia due to shortness of breath, rapid heart rate and dizzy spells. I am not sure if it was aggravated by the strong herx, the PICC, or the blood regulating herbs. I have been having an onset of night terror episodes (used to have them as a child) due to trouble breathing at night (it feels like, when I dose off, I lose a slight ability to regulate my breathe), and since my reflux is regulated with Protonix and Probiotics, I feel that it is more of a nerve trouble with my breathing/swallowing. I was actually doing very well the first month of treatment and made a huge turnaround, but something hit me like a truck recently and my scleroderma/lyme symptoms are back hard again. I don’t have severe skin tightening, but my entire body of skin feels very rubbery, painful, thicker, and stiff and I am having trouble moving my face and smiling. My LLMD is supporting me to go to a Scleroderma Center just to get a clear diagnosis of where I am at with that since my local rheumatologist is not keen on performing a skin score or a PFT. I am scheduled to get a free workup next month at a Sclero Center as part of their Resunab trial which is a promising cannabinoid that has been deemed safe and successful and does not suppress the immune system. It seems to be a good scleroderma drug to add to AP or any other treatments for Scleroderma since it has so far had a very symptom-free record and is non-toxic or suppressive.
Has anyone else had any POTS/Dysautonomia associated with these diseases, and if so, how have they been regulated? My breathing and heart rate are debilitating recently, and even though the ER said to come back if anything, it would be nice to find a solution and not have to live there as my second home. my ECHO was okay, but they found a slight abnormality on my EKG that was never explored. I am meeting with my LLMD in a few days and we are trying to figure out how to change things once again and explore a potential Dysautonomia so that we can work on it so I am moving forward again and not regressing. We are also discussing IV Glutathione.
I am currently back to 100/mg of Minocycline twice daily, and 250/mg Zithromax once daily. I quit the Plaquenil due to gum bleeding which subsided shortly after I stopped the med. I am trying to meditate and relax through all of this recent madness since I am physically less active until the nerve from the PICC heals. I was all about the infrared sauna, but, could not go with the PICC in and recently tried again, but was experiencing shortness of breath and a very high heart rate.
Any replies or similar experiences/symptoms would be gratefully welcomed! I am a little overwhelmed with all of the recent changes and symptoms, and am trying to just be chill and smile through it until things get back on track.Hi ALTB937,
What a journey you have had – both SD and nervous system involvement with the Lyme. Your LLMD certainly seems to be very thorough and, had you been able to tolerate the meds, he had you on a very comprehensive protocol. That said, if there is one core therapy that you could remain on, minocycline would be my top pick, because it is both neuro-protective (used to prevent damage in stroke victims and in neurodegenerative diseases, like MS) and an excellent choice for SD patients due to its superior lipid solubility. Even better would be if you could someone get the original brand approved by your insurance (right now, it’s exorbitant in cost). In fact, in the UK, there has been a recent unfolding of info – a veritable revelation, re: neuro diseases, such as Alzheimer’s, Parkinson’s, etc., and the infection connection from some pretty major medical centers:
Has it been determined what type of SD that you have? You mentioned morphea, so wondering if its the localized/limited form?
The POTs/dysautonomia diagnosis is certainly a concern for you, as well as the hypercoagulation issue. If I might suggest it, you could ask your LLMD about IVIG infusions and also whether chelation might help. Some folks with sticky blood also think about plasmapheresis. We had a volunteer here (now retired) who also suffered from sticky blood and she had MCTD/Lyme. She found it took several months, but she was able to avoid Coumadin by taking systemic enzymes, as your LLMD has you taking.
Gut and neuro issues seem to be connected and I’d suggest reading the following, as there might be some interesting takeaways for you:
http://www.practicalgastro.com/pdf/April06/SherrArticle.pdf
It’s possible that the vagus nerve is implicated in POTs/dysautonomia and this nerve serves the chest (heart/lungs), spleen and gut. I had to learn a lot about this nerve, as I had a thyroidectomy last summer and the laryngeal nerve branches off the vagus nerve and I was worried about worsening RA if this nerve was traumatized. A neurologist/researcher in NY, Dr. Kevin Tracey (Feinstein Institute), has discovered that the vagus nerve controls signaling to the spleen where inflammatory cytokines are produced and he has developed a tiny, battery powered nerve stimulator that is surgically implanted onto the vagus nerve. This tiny device is basically modulating immune function by correcting aberrant TNF signaling. Perhaps you could talk to your LLMD about this researcher and ask if he’d consult with him on your behalf? It’s just an idea, but as the vagus nerve is closely related to this condition, it might serve some helpful purpose.
http://www.ncbi.nlm.nih.gov/books/NBK400/
A final thought…has your LLMD uncovered any associated tick-borne coinfections? Again, wondering about babesiosis, which is a red blood cell parasite that loves the spleen to hang out in and also can worsen neuro symptoms (including causing anemia, air hunger and chest wall pain). The antibiotics you’re still on would help, but if your doc also uses herbals, you could ask about liposomal artemisinin. There is a pharmacy in MA that compounds it, if this is of interest to you or him. Low dose naltrexone is also pretty benign and helpful for modulating neurological diseases.
It’s late here, but these are just some initial thoughts that came to mind and that I thought to share with you. Hope something is of interest in your researches and please come back and let us know how you get on at your appt.
Hi,
Your dose of azithromycin is rather high, especially considering that you are also taking 100 mg of minocycline twice a day. Because of its long half-life, 250 mg of azithromycin on MWF is enough when one is taking it long-term. Also, azithromycin is known for causing cardiac arrhythmia in some patients. Even if azithromycin is not the cause of your “dysautonomia,” there is a possibility that it could turn a condition that is not life-threatening into one that is.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinAl,
Do you have asthma? Have you been checked towards asthma?
Linda LRA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousIt took me a while to figure out this forum, and I apologize for my delay in response after my initial novel I wrote to you guys on here! Thank you so much for your thorough responses. To be clear, I have the diffuse form of SD with SCL-70 antibodies, but the antibodies actually went down a few points after 3 months treatment so far. It has been tricky treatment, but, since my last post, Maz you were right, I got a diagnosis of babesiosis. My doc stopped all meds and tried Coartem for a few days and I herxed very bad on it. Babesiosis also has been linked to my night terror episodes. We are going to try to find a milder way to treat it so that I do not herx so bad and so I can stay on the Minocycline and Zith as well, so I will mention artemisinin as an option. Since doing a week of the Coartem though, my POTS has improved.
Thank you, Phil, I am beginning to do the Zithromax only 3x a week and am feeling a little better as well.
I am currently pulsing the IV ceftriaxone since I had such good results with it, but cannot have a PICC due to my last complication with it and my slow healing from Scleroderma, so I do it in rounds of 4 day temporary IVs every few weeks. I stop all other antibiotics while I pulse the Ceftriaxone, but the IV seems to give me great leaps and bounds in progress. Just started a 4 day pulse of it today, and the temporary IV is much better than the PICC fiasco! (I was so desperate in my original post! These diseases can be a nightmare). I am doing better overall though, slow and steady.
And again Maz, you are right, Vagus nerve has been causing a lot of my symptoms. I have an involuntarily twitchy tongue and dysphagia that has not been associated with GERD, my docs and I concluded that it is the nerve function. Thank you for the info on the researcher, I may look into it.
Along with my LLMD, I have a great rheumatologist who sees a lot of Scleroderma patients, and she is very supportive with my Lyme being a trigger and believes in the infectious bacteria theory with autoimmune, so the combo of these docs has been a blessing and a rare find. I may discuss IVIG and plasmaperesis with her as options at my next visit.Thank you for all of your help and wonderful responses! Overall, this treatment has gotten me out of bed and away from the hospital, and I even have a few good days a week now where I can train in my athletic career again! Only looking up from here!
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