I have been in treatment with A LLMD for a year (Clinical diagnosis Lyme, Bart/Babs. WB only 41K IGM & IGG) and stopped all antibiotics 6 weeks ago due to an yeast infection. Have cleared out the yeast infection.
My cholesterol kept creeping up during antibiotic treatment and during last LLMD visit it was quite high:300.
I also decided to go off all antibiotic to retest cholesterol after being off since I did not have a problem until I started Lyme treatment.
In addition I was getting bloody noses (from Antibiotics/Rifamin??) saw Ear/Nose/Throat; had CAT scan. Everything fine. He also said yeast was gone (had it in my ears, most likely in my mouth if one can rely on the "spit" test mouth). No longer getting bloody noses.
As you can see, this is quite complex, as well as frustrating!!
Since stopping the antibiotics; after a few weeks almost all of my symptoms have returned; achy joints, night sweats. very sore feet.
I have been having problems with foot pain for years (misdiagnosed Lyme for more that 10 years). My foot pain was less while on antibiotics but never went away entirely. Worse in the AM when I first get up.
I finally saw a podiatrist two weeks ago after having great difficulty walking (shattered my pelvis 20 yr. ago; right leg a bit shorter than the left as a result, numerics x-rays since; no arthritis, ANA (-) all RH test (-) Lupus (-) CRP (-).
I decided to have custom orthopedic insoles made and they arrived today. In speaking with the podiatrist (who has quite an extensive knowledge of Lyme since he has positive WB after multiple tick bites Upstate; does not believe in seeing ID doctors) asked if I have ever seen a rhematologist.
Answer: NO, every other kind of doctor but a rhematologist! He suggested I see a rhematologist at the Special Surgery Hospital in New York City where I live. He gave me a referral.
Is this going to be just another "I don't know what is wrong with you!"
I see my LLMD in 2 weeks will ask him; in the meanwhile I am seeking your opinions; most of you know more than most of the doctors I have seen in the last 5 years!!
Any experiences will be appreciated!!! Thanks, with warm regards, p.
Posted by Razzle (Member # 30398) on :
If your symptoms improved on abx, then it is likely an infection of some kind is at least partially responsible for your symptoms.
Plantar fasciitis (pain on the bottom of the feet, worse in the morning) is a known symptom of Bart., and would only respond if you were on the correct treatment to get rid of Bart. Vitamin B12 and magnesium may also be needed, but if the infection is responsible then there should be some response from abx.
I also agree with the idea that proper support for the feet (orthotic shoe inserts, appropriate footware for the kinds of activities you do) can make a big difference - it does for me (and I have a clinical Bart. dx).
Gait training may also be helpful...this is done by orthopedic physicians or physical therapists usually.
I think it may be worth talking with the rheumatologist. You might want to find out if the rheumatologist you've been referred to believes that some rheumatic diseases can be due to chronic persistant infection...see http://www.roadback.org/ for more info on this...
Take care,
Posted by Lymetoo (Member # 743) on :
MOST rheumatologists use STEROIDS .. so be forewarned. You still have an INFECTION it seems. Get it treated first.
Just my humble opinion.
(do read at www.roadback.org .. very interesting site)
Posted by piper (Member # 25946) on :
Thank you for your responses; will read roadback.
According to the podiatrist I do not have Plantar fasciitis. He's perplexed, but does agree with the clinical diagnosis of Lyme. He thought I could benefit from seeing a rheumatoligist in case it is something else??
Just unsure if I should continue searching for more answers from yet another doctor!
Posted by Lymetoo (Member # 743) on :
What else is there? RA and Lupus .. or Sjogren's .. Steroids is their answer. Most of the above are caused by infections in my opinion.
Posted by LymeAware (Member # 26195) on :
I'm sorry I don't know what to say regarding the Rheumatologist, although I usually would think of them as not being able to help our needs. Of course I have no idea, but in general, I wouldn't think of them as being so lyme-literate.
My first thought in reading your post was what Razzle mentioned: Bartonella.
Have you been treated for this, or have other symptoms? Does your LLMD have ideas regarding the foot pain?
Posted by Lymetoo (Member # 743) on :
One in ten rheumies know about Lyme and how to treat it. They are LLMD's .. and they are few and far between.
Posted by LymesNotSweet (Member # 32089) on :
I have had three positive ANA's for Sjogren's, and my LLMD is SURE I have Lyme. My rheumatologist still insists I just have "classic" Fibromyalgia. Go figure. Just my experience.
Posted by baileypup (Member # 22824) on :
Rheumatologists are the antithesis of an LLMD. They are completely ani-antibiotic and pro immune-suppression. They will laugh you out of the office.
It is a futile waste of your time.
Posted by average joe (Member # 26091) on :
Agreed, I have seen 2 rheumies. One said syphilis. I tested for that just to prove her wrong.
The other said reactive arthritis and some kind of sacral joint thing (can't remember the name of it right now).
The latter was asked about all the other symptoms that could have nothing to do with those dx's. Her response was "there must be something else going on as well"
She also said fibromyalgia doesn't fit in spite of another doc stating in his report that I was positive in 14 out of 18 known fobro points.
2 different rheum docs, 2 different cities. Both whack jobs.
Save yourself the trouble, you will just go round in circles with their treatment. I know a quite a few people in this situation.
The bart mentioned above is most likely the cause of your foot issues. Night sweats can be bart or babs if memory serves.
Good luck, I hope you find the answer.
Posted by piper (Member # 25946) on :
Thank you for your responses. I need to make a correction. I had written misdiagnosed Lyme. I meant misdiagnosed for everything until I was diagnosed for Lyme.
While on antibiotics for Bart ? (PennV, Biaxian, Rafimin for 4 months) my feet were much better.
Maybe this will be a good time to be retested (WB/Babs/Bart, since I have been off everything for 6 weeks. Not sure if its worth being retested.
I agree I think seeing a rhematologist will be another run around.
Very disappointed that when I stopped antibiotics my symptoms returned. Wil see what my LLMD says when I see him in 2 weeks. Fells like I will have to start all over again?
Feeling very discouraged at this point.
Thanks again, warm regards, p
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LymesNotSweet: I have had three positive ANA's for Sjogren's, and my LLMD is SURE I have Lyme.
- You can have both. But treat the LYME first!!!
Posted by Lymetoo (Member # 743) on :
piper .. no need for retesting .. you need treatment until you are feeling well. You're not "starting all over" .. you are continuing.
Posted by lymeboy (Member # 24769) on :
a rheumatologist will most likely give you steroids and diagnose you with Fibromyalgia, which, in my opinion, is a made up disease. You have Lyme and coinfections. I would go back to treating Bart and Lyme. If you don't think your LLMD is aggressive enough, or that he/she is getting you well, switch.
I'm not a doctor, this is just my 2 cents. Stay away from Rheumatologists. I have had bad experiences with more than one... More than two for that matter! Feel free to PM me for specifics.
Posted by fourwinds (Member # 14114) on :
I am new here; but have lots of experience with the thyroid/adrenal problems (w/ infection). One of the first things to check when cholesterol starts going up is the thyroid function (and most allopathics dismiss this)
And, as we know, in treating infections w/ABX it does affect the HPA. I am not a doc (disclaimer but treating these infections does throw the HPA for a loop and this could be part of what is going on with you. JMO from experience.
Posted by piper (Member # 25946) on :
Dear Fourwinds
LLMD checked thyroid and adrenal--all fine...It's all a mystery to me!!! Thank you for your response!
Posted by Beagle (Member # 29698) on :
I for one, refused to see Rheumatologist although was told I should. but I have heard that people with Lyme or co's are best to avoid Rheumis at all costs!
Posted by Neil M Martin (Member # 2357) on :
Hi Beagle;
I agree. In 1999 my PCP JS sent me to ID Dr. EP, who had "No idea" if I had Lyme, and sent me to rheumi MM, who also had "no idea" what was wrong with me. The 3 Drs. said they lacked quals to dx/treat LD. But they had no qualms denying it as a dx. Neither did they know an AZ Dr. to treat LD.
My HMO spin to administrative law judge: These Drs. "found nothing to indicate Lyme disease."
As the Drs. left inadequate patient records, I am less than enthused about recommending them or their kind.
Posted by Razzle (Member # 30398) on :
quote:Originally posted by piper: Dear Fourwinds
LLMD checked thyroid and adrenal--all fine...It's all a mystery to me!!! Thank you for your response!
If they only ran the TSH, this is NOT a thyroid hormone and will not be the best indicator (by itself) of thyroid function. Must also check free T3, free T4, and thyroid antibodies in addition, and the TSH should be between .3 and 3.0 instead of what most labs use as a normal range. See http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm for more info.
I have no financial connections with any of the above-mentioned websites.
Posted by piper (Member # 25946) on :
Razzle, Thank you for the information. I looked at my resent blood work; T3 and T4 were tested and within the rages mentioned. Interesting articles. Will ask my LLMD about his opinions re thyroid.
Others, After reading your responses I have decided I will not see the rhematologist. I have my next appointment with my LLMD on June 17th...we'll see what he says; perhaps I will need to go back on antibiotics.
I received my orthopedic insoles last Friday; hopefully they will help my feet once I get them broken in!!
Nevertheless, I will ask LLMD about re-treating for Bart if I don't feel better by then (wishful thinking!)
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but treating these infections does throw the HPA for a loop and this could be part of what is going on with you. JMO from experience.