posted
Hi! I am new to this board and am looking for llmd in or near Colorado Springs, Colorado. I have a great specialist in Denver but would like to find someone local, if possible.
My specialist in Denver is just that, a specialist (a very good specialist). I'd like to find a llmd locally that can see me for other things, too. I'm probably asking too much, there!
I was diagnosed with Lyme by a positive blood test through Quest laboratories followed by IGeneX Western Blot, Palo Alto, California in August 2007.
IGG
41 ++
58 +
IGM
39 IND
41 IND
58 +
83-93 +
I am also positive for Mycoplasma Pnuemoiae, Epstein-Barr Virus, and yeast. I am due to start lyme treatment after the EBV treatment (mentioned below) is completed.
My story of illness began in 1991 when I was deployed to Desert Storm. It wasn't even a week after deploying that I began to feel poorly.
I had many small issues that I didn't put together and would complain to the doctor about those issues but thought nothing more abou them.
I began having debilitating problems with my muscles in my back and neck in 1994, with migraines in 1998 and after my first pregnancy in 2001 I was miserable.
I thought my feeling tired and generally awful was from recovering from pregnancy and having a little one. 20 months later our second child came and I was worse. I couldn't work anymore; how I made it through those days I will never know! I had always kept myself in good shape, my prepregnancy weight (5'4") was 130.
After pregnancy was 165. I began to lose it without trying and dropped down to 115 in 3 months! For about a year after I couldn't keep from losing weight then things shifted and I began gaining.
A year later I was up 20 pounds. I'm now 150 and gaining. I've tried all sorts of dieting, moderation, etc... nothing works, I can only gain.
I began to research my symptoms and found that my doctors (military) knew nothing of how to treat me. I asked for a referral to a specialist in Denver and lucked out!
This MD has run tests, done intensive interviews with me and my family, and offered real treatment. I am now able to function through the day, do some light activity or housework, and take care of our kids .
I've been treated with antibiotics:
Diflucan and Nystatin for yeast
Zithromax for Mycoplasma
Valtrex for EBV.
Zithromax side effects caused a temporary hearing loss so I had to stop that early and 3x daily Valtrex caused the runs .
Was able to cut back to 2x a day but suboptimal treatment allowed the EBV to remain present and repopulate shortly after stopping Valtrex.
I am currently being treated with Kutapressin for EBV instead. Kutapressin is an old medication, although considered experimental, and available through compounding pharmacies It has has had huge success at riding the body of EBV.
It is given through injection into the thigh once daily for 30 days and then 1x every other day for 60 days. I just started that yesterday. I'm also receiving immunoglobulin injections every 2 weeks to help my body fight off all this junk!
In addition to the above, I've been diagnosed with:
thyroid dysfunction
adrenal insufficiency
pituatary dysfunction
Coagulation Defect
Chronic Fatigue
Fibromyalgia
Migraines
sleep problems
IBD
PMS
acne
hair loss
ADD.
I've been treated with antidepressants (none worked)
compounded Liothyronine followed by compounded T3/T4 combination
compounded Cortisol for adrenals (made things worse) coupled with DHEA, Pregnenolone, high dose bio-id Progesterone
and testerone (which made me angry),
Heparin once for 3 months and once for 1 month for the coagulation defect and fibrin the above viruses hide in
iron
shots into my trigger points followed with massage, and physical therapy for my locked up neck and back
Ambien for sleep
tetracycline for acne
and Nioxin for hair loss.
My symptoms have been:
extreme fatigue
lethargic
cold all the time
drastic weight loss followed by drastic weight
gain (no control of either)
flu like symptoms after any kind of exersion
sporatic cycles, cramps, grumpy, bloated, etc...
iron deficiency
general muscle aches and pain
joint pain without swelling and inflammation
hard knots in my back
frozen joints in my neck and back
sore throat
daily, painful, swollen lymph nodes
headaches/migraines
sleep problems
hair loss
muscle weakness
high cholesterol that didn't respond to the positive until I began thyroid therapy
anxiety
depression
brain fog
difficulty with word finding
difficulty concentrating
benign breast lump
bone loss in my jaw (waiting on results of bone density scan)
I'm sure I'm forgetting some!
As far as the lyme treatment, can you refer me to a post or describe for me what you have been treated with that worked?
I've read about Rocephin but don't know what that is.
Does anyone else have a coagulation disorder or problem and how was it addressed?
Are there any Gulf War vets here and if so, are you experiencing the same things?
Thanks for listening and I appreciate your thoughts! Lisa
[ 10. January 2008, 02:29 PM: Message edited by: GWVet ]
Posts: 19 | From Colorado Springs, CO | Registered: Jan 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I just wanted to say welcome! You are lucky that you have found a doctor that seems to have a clue.
I don't have any answers to your questions but wanted to say hi and THANK YOU for what you do/did for this country.
Good Luck and others will be along with info for you.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Lisa,
Welcome to Lymenet! I hope through treatment that you can get better. I had many from your list of symptoms too, and after 17 months of abx, am much better.
Just a quick note to say that a great place to start reading is the newbie links listed above, and the ILAD's Dr. B guidelines. It is alot of information to digest, but one of the most important things you can do for your health is to learn about tick-borne diseases, as well as finding a llmd.
Rocephin (ceftriaxone) is a cephalosporin abx; it is used for lyme patients with neurological symptoms, because it crosses the blood-brain barrier. It has been a great choice of treatment for many.
I have used bicillin shots, minocycline, plaquenil and high-dose amoxy (not all at the same time); all of these have been helpful.
Did you get Igenex testing for babesia and bartonella?
As you served in Desert Storm, is it possible that your lyme/tick borne diseases (which can be devastating by themselves) are compounded with toxic exposures overseas? It sounds like (I am no expert on this) that depleted uranium, burning oil wells, and possible exposures to other toxic gases caused illness in DS veterans too.
My best wishes for your health.
Posts: 2557 | From home | Registered: Aug 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
^ up for others
Posts: 2557 | From home | Registered: Aug 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Welcome Lisa
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Thanks for those links. I have been through them before and gotten a great deal of information from them.
I always find no matter how many times I visit them and other websites on the matter, I always learn something new!
Thanks for referring me back to those! I will spend some time there looking for anything new.
Posts: 19 | From Colorado Springs, CO | Registered: Jan 2008
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posted
Seems to be a lot of common symptoms and similar response from the medical community with GWS & Lyme.
I think you will find almost similar experiences from many members here- with the exception that they did not serve in the military or travel to the gulf states.
I also wonder if one of the many shots you were given was Limerx, or somthing similar. That Lyme disease vaccicine was pulled for many problems- not the least that it gave Lyme disease to those that got the shots. There were lawsuits regarding this.
Also if you have time to read and are not confused enough pick up a copy of LAB 257. This will get you thinking more about what the Govt does with secret germ labs.
Please dont give up. YOu sound like one of US.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
I just wanted to share that I'm doing kutapressin too (the topical form, Nexavir) and I do think it is helping with the viruses. Another option is Valcyte but I personally think kutapressin is less toxic (just more expensive).
I got sick in 1992, but was having CFIDS prodrome symptoms for a year before that (constant upper respiratory infections). I am new to Lyme. Because of the time line of when I got sick and when GWS started, I have carefully followed the Gulf War Syndrome stuff for years.
I think it might be prudent to test for some of the rare biowarfare agents that were at times tested by the US Govt. (and possibly sold to Iraq). Beyond the mycoplasmas, I would personally test for things like Q Fever, Tularemia, brucella, and other rare infections that were part of the biowarfare program in the past (much of this is declassified at this point).
Of course coinfection tests are notoriously unreliable, but you never know.
I sympathize with you, having been sick for so long! I hope you find some hopeful information here.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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bettyg
Unregistered
posted
welcome lisa to the board!
great job editing; wow, what a laundry list of symptoms/illnesses.
if you want to find GULF WAR VETS, a suggestion:
edit your subject line to: newbie, looking for GULF WAR VETS!
to do this, click PAPER/PENCIL icon TO RIGHT OF YOUR NAME, this opens up subject line and body text. when done, click EDIT SEND! done....
Wishing you the best, and treepatrol is outstanding for coming up with links; many are on HIS ARCHIVE POST IN MEDICAL at top! check it out too!!! AAA rating!
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WildCondor
Unregistered
posted
That Western Blot looks positive to me. You only need one Lyme specific band to get a positive, and you have several. Remember though, Lyme disease is a clinical diagnosis and the lab tests are really only to help aid in the diagnosis, they are by no means definitive.
Welcome to the forum. Let me know if I can help you any. Link below to my site
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