This is my second post. Like so many I am frustrated. The specialists including the holistic doctor say I don't have Lyme but I don't believe them.
To me my blood work seems suspicious, though not neccasarily alarming. I am hoping people with more comprehension of lab results can help point some things out to me that the doctors are missing.
I just know a little too high here, a little too low there are all clues to this puzzle.
Here are the things that seemed off to me. Assume other testing was in normal range.
Here's some peices, please oh please give me any insight you have on comprehending it.
Medical info
Caucasian female from New England� -(central MA, summers on cape cod and lake regions of Maine)
Allergies; Dust mites Eggs Egg whites Wheat Tomatoes Garlic Carrots Avocados Ginger White beans Milk Casein Peanuts Tree nuts
Thanks so much.
Symptoms are too numerous to name all, and migrate and change in intensity it is so hard to keep track but here are the major ones.
-Always present headache at base if skull and forehead. Usually only at about a 3/4 so I can function but is annoying
- always present all over ache in joints and bones
- dizziness
- extreme morning stiffness and pain. Especially in feet where toes meet foot.
- level ten like pain in thumb joints that only lasts for brief periods of time
- anxiety/ panic . Easily overwhelmed by tasks, even though I am aware I am being irrational I can't calm down
- itchiness on skin, migrates, comes and goes, worse at night
- brain fog , by far this is the most annoying symptom
- stomach issues
Currently taking: Doxy (100mg 2x a day) Prebiotics Probiotics Vit D Colostrum Armour thyroid (15mg 1 x a day) Gabapentin Colloidal silver
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Posted by Tucker-Bell (Member # 37578) on :
2 last things:
-I also just finished about a month of nystatin
- one other very annoying symptoms is ear pain and pressure, like my ears should pop but don't. Sometime a clear fluid will come out of my ear if I block it, the pressure releases fluid, feels better but then pressure builds again in under a minute. No infection in ears,ever.
Posted by Tucker-Bell (Member # 37578) on :
I can't believe I forgot to mention these two symptoms as well
- back pain, can get really painful, radiates to ribs, feels like muscles along spine are all knotted. Plus very tender spots all over rib cage. Who,e thoracic cavity often aches.
- water balloon like swelling, presently mostly around abdomen and hips ( the rheumatologist told me at 106lbs I was just being vain about " a little soft skin" grrrrrrr) but it is very very weird feeling. Has also occurred in back of neck as well.
Usually when I feel my worst I notice the swelling is also up. And when I'm feeling closer to normal the swelling is down.
Sed rates are normal despite obvious swelling.
Posted by outerspace1226 (Member # 34274) on :
Nobody here is going to diagnose you with a positive. But if those are truly your labs, you have lyme. That is a positive ELISA. Those are rarely if ever false positives. I would get a full panel of lyme and co infections ran through IGENEX.
At least at the minimum get the IGENEX 200$ basic w. blot.
Might as well start tackiing this now, earlier the better. Posted by Tucker-Bell (Member # 37578) on :
Thanks for the information.
I don't expect anyone here to diagnose me. I just feel there are funky things on my blood work like low IgG, and low HCT and high MPV. I know the numbers aren't ridiculously off.
But when you put a few small peices of the puzzle together, then to me at least it seems way more suspicious.
I just don't get doctors, if an HIV screen was a " little bit positive" then wouldn't they be more likely to assume you had that, then you didn't.
Why are doctors so hesitant to treat Lyme? I'm so frustrated.
Posted by Lymetoo (Member # 743) on :
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.
This includes any "holistic" doctors, herbalist, naturopathic doctors, etc.
Some will say they are LL. Some truly THINK they are. However, even of those, many are not at all LL. Most are not ILADS "educated" - and if not - they simply are not able to adequately address diagnosis or your care.
ANYONE you see should be ILADS "educated" even if they have their own methods (as most do) for your individualized treatment.
There is a link here for ILADS-educated LL doctors other than MDs, too. -
Posted by outerspace1226 (Member # 34274) on :
I'm sorry that you are just learning this. People with Lyme and co-infections(right now) are going through a time just like HIV in the early 80s and Polio in the 40s and 50s.
Factors why doctors ignore positive results.
1. it's very complex and expensive to fix 2. testing is not accurate (too many false negatives) which leads them to believe there is false positives, wrong. 3. it's too much liability for a regular md to prescribe long term anti biotics 4. it's makes more money to call it MS,CFS,ALS or whatever because they know your insurance won't cover lyme 5. it's not common enough YET to hit the panic button, but it'll get there in a few years. 6. the old guys that made the standards in the 80's didn't account for CHRONIC lyme, only Acute. They are two separate illness that need to be addressed drastically different.
this disease you have to beat on your own with the tools and resources of a good LLMD
Posted by Tucker-Bell (Member # 37578) on :
Thank you so much for all the information and support. Reading posts on here is like a breath of fresh air.
I feel like it seems everyone I talk to in person knows so little about Lyme, but on here everyone is so knowledgeable.
I have an appt for an LLMD in CT mid August. I do not know if he is ILADS or not.
Posted by Lymetoo (Member # 743) on :
I can't believe I forgot to mention these two symptoms as well
- back pain, can get really painful, radiates to ribs, feels like muscles along spine are all knotted. Plus very tender spots all over rib cage. Who,e thoracic cavity often aches.
- water balloon like swelling, presently mostly around abdomen and hips ( the rheumatologist told me at 106lbs I was just being vain about " a little soft skin" grrrrrrr) but it is very very weird feeling. Has also occurred in back of neck as well.
Usually when I feel my worst I notice the swelling is also up. And when I'm feeling closer to normal the swelling is down.
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