posted
Hi Folks, I may have had a remission of lyme/mold issues and I'm trying to get a handle on where to start....
Background - Previously, I had about 8 years of lyme/mold problems. Tick bite, lyme symptoms, I tried IV abx, oral abx, diets, Rife, IFR sauna, oxygen, ozone.
I FINALLY got better after a clean (no mold) housing move and months of CSM, fish oil, and Equilib supplement capsules recommended by my favorite Lyme/mold Dr. Ack**ley in Tucson. After that I was healthy for about 3 years.
Then, about two years ago now, 3 things all happened in less than a week's time: 1) Something dramatically changed in my thinking. It wasn't like depression (I would know!) but it was a big loss of motivation, executive ability, and some mild confusion and poor memory. I had to quit work then. I haven't worked since.
2) COMPLETE loss of appetite. That persisted for about a year, and is maybe 50% recovered at this point.
3) Almost complete loss of libido. (I know that as men age, their libido usually decreases. However, this was dramatic and extremely quick) This hasn't improved at all since then.
At the time, I guessed that this was ultimately lyme/mold related, although the more recent symptoms were different this time (especially the appetite loss and libido). I found a recommended "LLMD" here in Atlanta and consulted with her.
She started me on a general probiotic/nutrition plan, prescribed a small amount of CSM and sent me for a bunch of bloodwork (although a lyme test wasn't ordered). ALL of the extensive testing results were fine, EXCEPT my C4A inflammation marker was 12,000 (4 times the higher limit of the normal range!)
I'm hearing that it could have been a "false positive" if the test wasn't processed exactly like it needs to be....It was done in Denver by National Jewish labs. I'm just not sure if it was processed here properly here before it went to them....
Also, FWIW, my C3A was at the very bottom of the normal range. (If you have other results questions, I still have the extensive lab results)
Disappointingly, my LLMD didn't seem to know or care about the significance of this result. I quickly lost any faith in her "expertise" and quit seeing her. This all happened about 1 1/2 years ago.
Since then I saw a neurologist, an endocrinologist, a psychiatrist, and tried all types of anti-depressants, etc., none of which helped at all, not surprisingly.
For a while I just completely gave up on figuring this out. The symptoms, aside from a mild improvement in appetite, haven't basically changed at all since then.
But now I am trying to get going again on trying to sort this stuff out, and I'm guessing I really need to pursue the lyme/mold avenue. Recently, I took another VCS test and passed just fine, which seems to imply that mold might not be an issue currently. I have taken these tests in the past and they have indicated mold issues, but that was a long time ago.
This new VCS result, combined with the different symptoms, makes me suspect lyme more than mold at this point. I don't feel I have the tenacity, and certainly any money like I did before, so I really need to be as smart as I can to get this sorted out as quick as I can.
Hopefully my lengthy past experiences will help now. I might need a CD57, a PROPERLY DONE C4A test, etc. Maybe I can try ILADS for another LLMD hopefully somewhere near Atlanta. I am also considering finding someone to prescribe a good amount of CSM for a while to see if that might help.
Does anybody here have any informed thoughts on the situation from what I've described? I'm largely interested in the implications of the very high C4A level. For that matter, I'm wondering what other medical conditions I might want to rule out too.
[ 03-29-2021, 11:50 AM: Message edited by: spaceboy3000 ]
Posts: 15 | From Atlanta, GA | Registered: Aug 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
spaceboy, Lyme & mold illness does a real number on the thyroid gland. Thyroid hormones are the master of the entire body from head to toe.
Two of your 3 major complaints above reminded me of myself when suddenly about 4 yrs ago something flipped in my illness.
I was hypothyroid long before Lyme & company devastated me. I had been on the same thyroid medicine for over 30 yrs.
When I started diving into the thyroid world I found it to be just as crazy as the Lyme world. And yes, finding doctors that understood that was as difficult as finding a Lyme/Mold doctor.
Here's some reading from a site that truly helped me understand what was happening in my world. Oh BTW, thyroid testing ordered by so called doctors, even Endocrinologist is about crazy as Lyme/Mold testing also.
Their education in thyroid has not changed in 50 yrs. They are brain washed that Synthroid T4 is the answer to what can become a miserable life with testing of TSH only especially in folks chronically ill.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I agree with Map. Even after I explained to a naturopath that the outside of the cells are flooded to induce the thyroid hormone to enter the cell, she still worried every time the TSH was low.
I think if a practitioner is dependent on the insurance companies for payment and to keep their license, they will resist information that isn't widely accepted. I can understand that, but it isn't good enough for the level of treatment that LD patients need.
My thyroid med was just adjusted up, and I now take it on an empty stomach. I feel much better in quite a few areas of concern.
I take CSM and find it very helpful. There's other things that I'm doing to detox, but I know the CSM works.
One more point: I find that illness and feelings of motivation go hand in hand. So, if I feel lethargic or disinterest in my life activities, I consider it a symptom.
Sure hope you find a good LLMD. It's such a complicated illness, it's good to have that help.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Thanks so much to both of you!! I'm knee deep into the thyroid info as we speak. From all my previous experience with mold/lyme, what you are saying sounds quite promising. Sadly, I've found, that the further off the "beaten path" of standard medical treatment that research leads you to is almost always the road to wellness. Quite sad for a "first world" nation.
Thanks again, and you should probably both expect some PMs, soon!
Posts: 15 | From Atlanta, GA | Registered: Aug 2010
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posted
I don't have any specific advice to give you - so sorry you are still having ongoing problems.
I think a good LLMD with many years of experience treating Lyme & co-infections along with a high success rate of getting patients well could help you.
Check the GA Lyme Support Groups to ask if they can recommend one to you. I don't know of any in Atlanta.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
OK - Here's possibly a very stupid question, but here goes:
What if I get my hands on some NDT(??) and give it a whirl to see if I get some sort of reaction, which might hopefully indicate that I need to delve into the thyroid issue more? Is that stupid? Do people try that? Just wondering.....
Posts: 15 | From Atlanta, GA | Registered: Aug 2010
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Thyroid hormones affect pretty much every system that keeps a person going. Reactions won't be quick and obvious. It's a complicated issue.
I have been at less than optimum doses and couldn't tell symptoms were from the thyroid levels being off.
If you get test results for your thyroid levels, what formula is there to know how much to take? Maybe someone here knows, and will contact you.
I can't say any question about experimenting with meds or supps is stupid because I went years treating myself, mainly with herbs. I was my own lab rat.
There were mistakes, since I was working with symptoms only. I didn't know I had Lyme disease for many years.
I'm so happy I found an LLMD, and can afford one. I've been able to direct my efforts more accurately. I'm getting results and haven't had mistakes I had to recover from.
So, I recommend finding a good LLMD, even though they cost a lot up front. It's actually less than going to another doctor for years who only gives 7 minutes of attention, and doesn't know how to treat Lyme disease.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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I'm hoping I've found an open-minded LLMD here in Atlanta. Meanwhile I'm looking more into the thyroid etc. situation, probably just to cover my bases. My guess at this point is that the "thyroid" issues are probably just caused by mold/lyme isssues/inflammation. But keeping them in mind. I've found that sometimes you also have to go after the side effects too, not just the main problem.
Posts: 15 | From Atlanta, GA | Registered: Aug 2010
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posted
spaceboy, I'm not a doctor here, was just curious to check out the lowered appetite issue - hormones can do this - a dance between leptin (lowers appetite) and ghrelin (raises it). You could read up on them a little.
Re low libido, lots of possibilities. Low testosterone and prolactin hormones can do that.
My two cents - you're only going to be guessing until you start doing some testing with a doc.
Posts: 13116 | From San Francisco | Registered: May 2006
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Here's an update: I just consulted with a different ILADS-listed ND here in Georgia, and I'm very encouraged initially. I gave her a pretty extensive medical history, and specifically what seemed to actually help me last time. She seems fine with helping me pursue the Ackerley/Shoemaker mold/lyme protocol with a few relatively minor additions.
The previous LLMDs I've seen in Georgia all wandered away from this established, ordered protocol, and instead focused on chasing down lesser symptoms and tests, out of order, which cost me a lot of time and $$, and never made any real progress in the big picture.
Especially in hindsight, I DON'T recommend straying from the Shoemaker/Ackerley protocol. There are specific reasons to do it, IN ORDER too. This protocol actually worked for me before, so I feel its a good place to start again this time. We'll find out!
The new doctor would like me to do an in-depth set of labs on lyme and co-infections (Vibrant Wellness Labs), hair analysis, and another test for neurological autoimmune disease (Vibrant Wellness' Neural Zoomer test). Also some other basic bloodwork too. Great Plains urine testing for mycotoxins and environmental stuff. C4A, MMP9, and TGFbeta1 also.
She additionally has in mind a Xymogen thyroid support supplement, an herbal supplement or two for lyme/viruses, and a ketones supplement that she really likes. She is also asking me to eliminate gluten from my diet.
The plan is to start right away with cholestyramine 3x a day (I've never had any probs tolerating it), a LOT of Equilib supplement capsules (highly recommended by Ackerley!!), lots of fish oil, and phosphatidyl choline (ALL per Ackerley).
Also, I will be starting off with a MARCONS nasal test, and do BEG spray if necessary. I also want to start with an ERMI or HERTSMI test to see about my apartment's cleanliness status.
I am also checking into the info that you folks posted. THANKS!
And off we go again......
Posts: 15 | From Atlanta, GA | Registered: Aug 2010
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