Been a while since I have been in touch, Last I posted I was seeing a LLMD in Amesbury but have since then switched to Dr D in Boston due to some questionable treatments the other was giving me. I am still suffering with no real progress, switched about two months ago to just Bixain 2x daily and planquil 2x daily.
My symptoms probraly the worst is the breathing issues, AKA air hunger. I had a PFT ( Pulmanary Function test ) and also scored a 30% on it. As the Dr put it I have the capacity of a 90 year old even though I am only 36. He could not come up with an answer as to why, had CT scans/MRI and all sorts of other tests but nothing showed up and of course nothing came out of the visit.
This weekend it really hit me hard when we were celebrating my daughters 3 year birthday and she asked Mama can you blow up this baloon for me. I didn't think twice but when she gave it to me and I couldn't even get it started, I just went into another room and cried, I had my husband do it behind the scenes.
I am in shock that there is nothing I can take nor nothing that can be done, I still miss my daily exercise that I did for 23 years, I miss teaching arobics which I did for 10 years and can no longer.
Dr D stays pretty mute with regards to the breathing problem when I inquire so I'm just not sure if this is all part of the new treatment or what. I am very frustrated at myself for being so limited in terms of what i can do If i could just get the breathing thing under control, I think I could mentally deal with all the other problems including my extreme weekness on the right where the tick bite was.
It has been a long 4 years (i'm sure there are ones that had suffered longer) but so hard with a young child that really doesn't understand my limatations and of course my husband.
Has anyone had any help with regards to the breathing issue? Should i just give the planquil some time to work and if so how long? and I following the right protocol ? I have heard of Babesia which my LLMD doesn't do testing for but I believe the plaquil will treat that if I am correct. In any case I am still around and like the rest of you still suffering, waiting and hoping something comes about someday.
Take care all
Kind regards Jeannine
Posted by Lisianthus (Member # 6631) on :
Breathing problems and "air hunger" are associated with Babesia. And if you are herxing from Plaquenil its probably babs. Plaquenil hits babs, but you should be on Mepron/Zith combo to really get it.
hope this helps you. Lisi
Posted by johnnyb (Member # 7645) on :
Jeannine I have similar issues with air hunger / shortness of breath, and I also did bad on the pft. Actually I did ok on all parts of the test EXCEPT for diffusion (DLCO), where I was only 60% of what I should have been. Pulmonologist cannot give me a reason, either, especially since my heart tests were normal. What parts of the pft did you do bad on? Suspecting babesia, I've been trying artemisinin (herbal, no prescription needed), which I think is helping. Haven't tried mepron or zith, but I am on biaxin (soon doxy), but no planquil. Babesia test (2 years ago) was neg, but LLMD says they can be incorrect.
- JB
Posted by Lisianthus (Member # 6631) on :
johnnyb -- Just to let you know... There are hundreds of strains of Babesia but they can only test for two of them. So you have a 98% chance of testing negitively when you actually may have it. Doctors have to go by symptoms more than tests.
If it is, and you treat it, then make sure you do not take Artemesia or Artemisinin on it's own. It has to be for instance, Mepron, a macrolide AND artemesia/artemesinin according to my LLMD who says failure to not do a 3 pronged combination may cause resistance.
DLL
Posted by amkdiaries (Member # 7035) on :
Yes I have been down the same road. My breathing was so labored that I couldn't finish telephone conversations. I had a lung scan, cat scan, 10 chest X-rays, pulmonary function tests and arterial blood gas tests which were all normal. No one ever thought that chest wall inflammation could be the problem. I found this out on my own because whenever I would take certain antibiotics my sternum became so inflamed that I couldn"t breathe. I finally saw a LLMD who treated me extensively with orals and I.V. and even though I am still ill, this symptom is gone. I was also on Mepron and Zithromax for 9 months which I feel helped the situation. I know how difficult it is but it is not life threatening and just try to get the right treatment!
Posted by Andie333 (Member # 7370) on :
Ditto for me with shortness of breath.
I would walk up to someone and say something: whoa, slow down, they'd say; you don't have to rush.
Not rushing just not breathing. And like amk, I had a lot of trouble talking on the phone at all.
I'm now almost 3 months into treatment, and I just realized when I read your post that my shortness of breath is mostly gone.
I tested negative for babesia but the LLMD put me on artemesia just in case. It's a pretty high grade of it, if that has an impact. As Johnny said, it's a supplement and available without prescription.
Lately, people have been telling me how much stronger I sound than I did a month or two ago. I realize now it's because I can actually breathe.
The thing is: we're all so different with this disease -- sometimes the same symptoms but different dx, different manifestations.
Not long ago, I talked with someone who sees the same LLMD I see...and from the start, she's had a completely different treatment protocol than mine.
I hadn't expected that!
Hope you're able to find something that works for you.
Andie
Posted by dontlikeliver (Member # 4749) on :
Andie,
Beware of taking only Artemesia/Artemisinin on it's own because IF you have babs, you are possibly only making it impossible to treat (resistant).
DLL
Posted by johnnyb (Member # 7645) on :
quote:Originally posted by dontlikeliver: Andie,
Beware of taking only Artemesia/Artemisinin on it's own because IF you have babs, you are possibly only making it impossible to treat (resistant).
DLL
Assuming you cannot get prescribed mepron, what are your options, then?
![[Roll Eyes]](rolleyes.gif)